Get Your Pink On!

05 Friday Oct 2012

Posted by lillygayle in breast cancer, breast cancer awareness month, breast cancer survivor, Lilly Gayle, romance author, survivor, The Wild Rose Press, think pink

≈ 5 Comments

It’s October. That time of year when I once again remind ladies to

As a registered x-ray technologist certified in mammography and a breast cancer survivor, I can’t stress enough the importance of an annual screening mammogram. It’s one of the few x-ray examinations that can save your life.

I know some women find them painful. Believe me. I hear it all the time. But a mammogram isn’t nearly as painful as breast cancer. Trust me on this.

In June 2007, I had my screening mammogram. My friend and sister mammographer, Linda, “squeezed” me in after we’d finished our patients for the day. This was back when our hospital still had film screen, so the x-rays dropped from a processor. I pulled the curtain in the tech area and was standing in front of the view box in my pink floral cape when Linda began hanging the films. The Left CC (cranial-caudal–the film taken from the top of the breast) fell from the processor first. It looked fine. No different from the year before. Then the Right CC fell out. It looked–different from the mammogram I’d had 18 months earlier.

Yes, I was 6 months late getting my mammogram, but I had no pain, no lumps, no family history, and no reason to be concerned. Until I saw that Right CC. There, next to my chest wall on the inside of my right breast was a star-shaped lesion with a large calcification in the center. That same lesion was evident on the RMLO (right medial-lateral obligque image–the one taken from the side.) But it was the Friday before Father’s Day and the radiologist had already gone home. So, I had all weekend to worry about that lesion. And suddenly, I had a BIG reason for concern. I’m not a doctor or radiologist, but I’d seen enough mammograms and enough cancers in my time to know that lesion didn’t look good.

On Monday, the radiologist ordered additional images and an ultrasound. I had those procedures the following Friday. And the Friday after that, I had a biopsy. The results came back July 3, 2007. I had breast cancer. Stage 1, but on the cusp of being Stage 2 because the margins weren’t clean and the cancer had a high proliferation rate…which meant is was aggressive and growing fast. I had DCIS (Ductal Carcinoma Insitu- an early cancer that is still contained in the ducts) and an invasive ductal carcinoma–a cancer in the duct that has spread to the surrounding tissue. And it was triple negative.

Triple-negative breast cancer doesn’t express the genes for estrogen receptor (ER), progesterone receptor (PR) or Her2/neu. Prognosis for Triple Negative breast cancer is the same for other breast cancers at the same stage, but more aggressive treatment is require to achieve that prognosis.

Some types of triple negative breast cancer are known to be more aggressive with poor prognosis, while other types have a prognosis similar to or better than hormone receptor positive breast cancers. Studies of triple negative breast cancers suggest that with optimal treatment, 20 year survival rates are close to those of hormone positive cancer.http://en.wikipedia.org/wiki/Triple-negative_breast_cancer

Although my cancer was Stage 1, I had a lumpectomy where more tissue was removed from the breast to ensure “clean” margins and I had to have a lymph node biopsy to prove the cancer hadn’t spread beyond the breast. Four nodes were removed and all four were negative. But because of my triple negative status, I had to have chemo and radiation. I had the chemo first.–two chemo drugs, Adriamycin and Cytoxan once every other week for eight weeks. Then after an MRI to prove there were no more lesions or DCIS, I was given the choice of a mastectomy and radiation, or radiation treatments five days a week for 6 weeks.

I chose to keep my breast, which meant mammograms every six months for 3 years and yearly MRI’s for three. To this day, there are times when I second guess my decision to keep my breast. But, had I chosen a mastectomy, I’m sure I would have second-guessed that decision as well.

Triple negative breast cancer has a different recurrence rate and pattern than hormone-positive breast cancers. The risk of recurrence is much higher for the first 3-5 years but drops sharply and substantially below that of hormone-positive breast cancers after that.

On December 12 of this year, it will be five years since my last radiation treatment. I will officially reach the five year mark and my personal risk of a recurrence will drop to that of someone with hormone positive breast cancer. Which isn’t to say that I’m no longer at risk, but by God, I still think I have a reason to celebrate!

So the next time you hear a woman complaining about how much a mammogram hurts, remind her that a few seconds of discomfort could save her life.

If she claims she doesn’t need a mammogram because she isn’t having any problems, remind her that most breast cancers are silent and painless. By the time a woman feels a lump, she already has an active disease.

Remind her that if she has extremely dense breast, a mammogram can miss a lobular carcinoma hiding within the glandular tissue. So, if she feels a lump and the mammogram is normal, she needs an ultrasound and possibly a biopsy.

If she claims she doesn’t have a family history of breast cancer, remind her that 70% of all NEW breast cancers are in women with no family history.

Hey, someone in the family has to be the first to screw up the gene pool. In my family, I was that person.

Although breast cancer is rare in women under 40 and the risk increases with age, no woman who has breasts is immune. That includes trans-gendered women.

Are you at risk? Check out the breast cancer assessment tool.
http://www.cancer.gov/bcrisktool/Default.aspx

And for more information on breast cancer, please visit http://www.cancer.org/Cancer/BreastCancer/index?ssSourceSiteId=null

The Importance of Cancer Support Groups

04 Friday Nov 2011

Posted by lillygayle in american cancer society, breast cancer, breast cancer survivor, cancer support groups, David Haas, Lilly Gayle, romance author, romance novelist, The Wild Rose Press

≈ 4 Comments

Please welcome today’s guest blogger, David Haas.

The Importance of Cancer Support Groups

Cancer is one of the scariest words in any language. Even with a support network of friends and family, fighting cancer can feel like one of the loneliest battles a person can undertake. This is in part because only someone who has had cancer can truly relate. Cancer survivor networks allow the person with cancer to talk to someone who understands what they are going through.
Although friends and family mean well, people with cancer often feel a need to discuss what they are going through and what they will be going through with someone who knows. Cancer survivor networks offer that information from people who have been there. There are many ways for people with cancer to find a support group. For those who feel like getting out and meeting people face to face, many cities and towns have groups not only for people with cancer, but for their families too. Doctors often know of support groups and can recommend a group.

For those who either cannot or choose to not get out and meet people, there are many discussion boards and websites that offer support. These websites usually have a place for family members so that they can get support for the fears and feelings they have, as well as learning what they can do to support the patient. The American Cancer Society hosts a website that has discussion boards for nearly every kind of cancer. If a patient is suffering from breast cancer, there are many different links that offer guidance and support for patients going through treatment. The American Cancer Society website lists support groups for cancers whether it is a common cancer like breast cancer or a rare disease like mesothelioma.

Support groups can be an important part of fighting cancer. Support groups can help patients make it through the physical trials, such as pain and fatigue. Support groups can also help deal with the psychological aspects of dealing with cancer by offering emotional and stress support. Studies have found the belonging to a support group can reduce anxiety and depression. These groups can also help the patient while undergoing treatment, and patients tend to cope better with all of the issues of treatment by understanding they are not the only ones to go through those issues.

Belonging to a cancer support group can be instrumental in fighting cancer. These support groups give the patient a sense that they are not alone in their battle, and it gives them a belief that the battle can be won.

David,

Thanks so much for sharing this valuable information. As a breast cancer survivor, I know the importance of not just family support, but support from other survivors. After I was diagnosed, the mother of one of my daughter’s friends volunteered to go with me for my first chemo treatment. Before that day, we were merely acquaintances. But we shared a common bond. Cancer. She’d come through the other side of the same dark tunnel I was about to enter. And she knew what I was feeling while my family knew only what I was willing to share.

If you’re fighting cancer, remember you don’t have to fight alone. There are support groups out there.

Toni V. Sweeney’s Breast Cancer Message

28 Friday Oct 2011

Posted by lillygayle in breast cancer, breast cancer awareness month, breast cancer survivor, romance author, romance novelist, romance novels, The Wild Rose Press, Toni V. Sweeney

≈ 6 Comments

It’s still breast cancer awareness week and today’s message to women is from fellow author and breast cancer survivor, Toni V. Sweeney.

Good to Go for Another Year

Dear Ms. Sweeney:

The radiologist has interpreted your recent mammogram and/or breast imaging study, and we are pleased to inform you that the results are normal or benign (no evidence of cancer).

As you know, early detection of cancer is important…

Okay, so I can breathe easier for another year. Had my yearly oncology check, my mammo, and I’m A-OK and good to go.

It’s been ten years now since I had the mammogram that wasn’t benign, or normal. Ten years since I detected that small lump during a self-exam. Ten years since I sat in an exam room, waiting for the confirmation of what I was afraid I was going to hear.

When I found what I thought was a lump, I didn’t delay making an appointment and going to a doctor. I’m usually a wait-and-see person but this time, I decided to meet the problem head-on. Surprisingly, it was my doctor who dilly-dallied around. Perhaps it was because I was unemployed and uninsured at the time, I don’t know, but after the biopsy confirming his diagnosis, I was told to “go home and wait,” that he’d call me with a referral to a surgeon.

Four weeks later, I was still waiting, and becoming panicky. After several phone calls which weren’t returned, I tried to think what to do. I was a stranger in a strange city in a new state, so I turned to the only place I could think of: the American Cancer Society. Three days after speaking to someone on the phone, I was on a gurney, being wheeled into surgery for a lumpectomy. I didn’t know that a few hours later, as soon as I walked through the door of my apartment, in fact, I would get a phone call asking me to come back—right then!—because they needed to do a second one.

Everything went well. I proceeded through radiation therapy, driving myself to the sessions each morning for six weeks. Then, I was started on Tamoxifen therapy instead of the traditional chemo. I gained 60 pounds on that route, going from a svelte 109 to a lumpy 165. Never going to lose it, they tell me, but—hey! You’re alive, so stop your complaining that you’re not attractive any more. (Forgive my sarcasm here. That has been, and always will be, a source of psychological upset to me.)

As to the rest of that letter…”early detection…is very important.”

Don’t I know it!

The year before I was diagnosed, I saw an ad on TV, stating that very thing, and the man I loved made me promise I’d do those self-exams and have a mammogram each year. I assured him I was already doing that. Soon afterward, he died, but my promised stayed in place.

The point of all this rambling is that, no matter what the AMA or any other medical association says, I personally think self-exams are important. Early detection counts. Train yourself to do the exam at the same time every month. After your period is a good time, because then the breasts are sensitive to touch and you’re able to find lumps easier. Some women prefer to do them in the shower, using soap and water to aid sliding fingers over surfaces; some prefer to lie prone; some stand in front of a mirror…but all do them, and that’s what counts. Even if you find what you think is a lump and it turns out to be simply a swollen gland…well, that’s good, too, because you found something and you had it checked.

Keep doing just that, and let’s head off breast cancer at the pass!

Toni, your story is similar to so many stories I hear as a mammogapher. I’m so glad you did NOT ignore the lump. Too often, women ignore those lumps and the warning bells in their heads. They justify not going to the doctor because they assume it’s just another cyst or feel secure because they don’t have a family history of breast cancer. I didn’t have a lump or a family history but I was diagnosed with stage 1 (sneaking into the stage 2 category) invasive carcinoma and DCIS (ductal carcinoma insitu) on a screening mammogram.

So, please ladies, don’t ignore ANY changes in your breasts. Do self breast exams. Know your breasts. If you feel a lump, see your doctor. If you are under 35, he may not order a mammogram because of your breast density, but please insist on a breast ultrasound. Breast cancer in women under 40 isn’t common. But it happens. EVERY day. So be aware. Get informed. And if you’re over 40, schedule an annual mammogram.

And now a bit about Toni~

AUTHOR BIO:

Toni V. Sweeney was born some time between the War Between the States and the Gulf War. She has lived 30 years in the South, a score in the Middle West, and a decade on the Pacific Coast and now she’s trying for her second 30 on the Great Plains. Her first novel was published in 1989. An accomplished artist as well as writer, she has a degree in Fine Art and a diploma in Graphic Art. Toni maintains a website for herself and her pseudonym Icy Snow Blackstone, and has been associated with the South Coast Writer's Association, the Pink Fuzzy Slipper Writers, several other writer’s loops, myspace, Facebook, and YouTube. Her latest novel is Runaway Brother (Class Act Books, http://www.classactbooks.com/Runaway-Brother-by-Icy-Snow-Blackstone-Trade_p_308.html) and her next book, due for released November 15, is Blood Bay, a thriller, also to be released by Class Act Books. It will be her 27th novel.

Breast Cancer Screening Update

26 Wednesday Oct 2011

Posted by lillygayle in breast cancer, Breast Cancer Awareness, breast cancer survivor, Lilly Gayle, The Wild Rose Press

≈ 8 Comments

In 2009, the US Prevention Service Task Force (USPSTF) a government agency, issued new recommendations for mammograms and breast cancer screenings. This controversial new recommendation suggested women younger than 50 without a family history of breast cancer didn’t need an annual mammogram. They also recommended that screening exams for women between 50 and 74 were needed every OTHER year, not annually. This reversed the USPSTF’s 2002 recommendations and went against the American Cancer Society and the American College of Radiology, both of which recommend baseline mammograms at age 35 and annual screenings of ALL women after age 40. There’s also no cut off age, as healthy women in their early to mid 80’s should still have mammograms.

The USPTF’s recommendations to NOT screen before age 50 was based on a study that showed screening 1,330 women over age 50 saved one life but it took 1,904 screening mammograms to save the life of one woman in the 40-50 age group. Hmm. I’m betting that one woman was damn glad she got screened!

The agency also suggested that screening led to false positives which then led to negative biopsies. They implied the biopsies were unnecessary. I don’t know about you, but I’d rather have 4 negative biopsies than 1 positive one. Oh. Wait. I’ve had one of each. And let me tell you, after being diagnosed with breast cancer in 2007, I was relieved my 2008 biopsy was negative.

The thing is, doctors are not going to biopsy women willy nilly. If a doctor recommends a biopsy, it’s because the radiologist saw something suspicious in the breast. It may turn out to be a cyst, lipoma, fibroadenoma, inflammation, or fibrocystic changes. But it could also be cancer. I’m not willing to bet my life on it and I don’t think most informed women would either.

The truth is, doctors have been ordering mammograms since the 1940’s but it wasn’t until the 1990’s that the government (and insurance companies) recognized the need for early detection and the need for screening mammograms. From 1940 to 1990, the death rate from breast cancer remained unchanged. From 1990 to present day, more women are getting screening mammograms and the death rates from breast cancer have decreased by 30%. That in itself says a lot about the need for early detection. Also, breast cancer is usually more aggressive in women younger than 50.

Honestly, I think extending the life expectancy of everyone is a good idea, but it is an especially good idea for women under 50. Early detection saves lives and women in a breast cancer screening program who are diagnosed with breast cancer are more likely to be diagnosed in stage one than women who find a palpable lump. Any woman who has annual clinical breast exams and a mammogram is in a breast screening program. And the program works better if the patient has their mammogram at the same facility each year.
If you decide to change facilities, remember to have your prior mammograms sent to the new facility.

Many doctors have chosen to ignore the US Prevention Service Task Force’s mammogram recommendation. Unfortunately, the task force recently denounced self-breast exams. The agency claimed women didn’t know how to do them and would therefore, stress needlessly if they found a lump that was actually normal glandular tissue. Now imagine how much more stress those women would undergo if they followed the government guidelines and stopped doing self-breast exams and were later diagnosed with breast cancer after the doctor found a palpable lump on clinical breast exam. I’m betting most women would rather find a lump that wasn’t a lump than not find a lump that was cancer.

So please, follow the recommendations of The American Cancer Society, The American College of Radiology, The FDA, and a mammogapher who happens to be a breast cancer survivor. If you are older than 20, do self breast exams. If you are older than 25, have your doctor or medical health provider do a clinical breast exam each year. If you are 35, have a baseline mammogram and then once you turn 40, have a mammogram every year. If you find a lump, have unilateral nipple discharge that is bloody or green, see your doctor. If you have a mother diagnosed with cancer before age 50, subtract 10 years from her age and that is when you should have your first mammogram.

Know your breast. Be informed. And get screened!

Conquering the Abyss by Mackenzie Crowne

21 Friday Oct 2011

Posted by lillygayle in breast cancer, Breast Cancer Awareness, breast cancer awareness month, romance novelist, romance stories, romance writers, The Wild Rose Press

≈ 30 Comments

Today’s blog needs little introduction. So, I will just say thank you to my new cyber friend and fellow TWRP author, Mackenzie Crowne.

Cancer.

Though it’s not a four-letter word, it sure conjures up a lot of them. Fear, sick, pain, loss, hell, dead, you get the drift. I can’t tell you the first four-letter word that popped into my mind when I got the call diagnosing me with stage-three breast cancer. My mother would wash out my mouth with soap.

At the time I was a healthy forty-seven years old. I’d been married to a great guy — since about the end of the bronze age — we’d raised two wonderful boys to special men, and I’d just become a grandmother.

It was October. You know — Breast cancer awareness month. Suddenly everywhere I looked there were pink ribbons, and survivors were coming out of the woodwork like members of a secret society, calling to me to enter into the fold. But I didn’t feel I belonged. I wasn’t anything like those women. They danced, victorious on the other side of an abyss, while I staggered under quiet disbelief.

I’m normally a, the glass is half-full, kind of woman, but these circumstances weren’t normal. My glass had dropped to the floor, shattering into a thousand different pieces, a thousand different emotions. I was overwhelmed, and no amount of superglue, or duct tape, was going to put my glass back together.

Some wise person once said, ‘Life happens. It’s time to pull on your big girl panties and deal with it.’

Big girl panties in place, I took those first, staggering steps toward survival. Three life-altering years later, I have somehow found my way from cancer patient to survivor. I didn’t do it alone.

My family and friends were there for me as I went through double mastectomies, chemotherapy, radiation, and numerous reconstructive surgeries. They were there for me when I was scared, when I hurt so badly I cried, when I lost my hair, and when I was too sick to stand. I can’t express how blessed I am to have them all in my life.

Having said that, the one thing they couldn’t do was fight the battle for me. I had to do that on my own. In an effort to remain sane in the midst of insanity, I relied on many different internal forces. There are too many to mention here. The following are the top three on my list of lifesavers.

Number one is my faith.

Don’t get me wrong, I don’t mean to belittle the many doctors, nurses, and other health care professionals I’ve become acquainted with in the past three years. I’ve met some very talented, very dedicated people. But even as well-trained as they all are, what they do is not an exact science. They couldn’t give me assurances. The best they could do was increase the odds of my survival. I needed those assurances. I found them in my faith.

I can’t tell you how many times I climbed into God’s lap, spiritually speaking, to rest in the confidence of His love. I think of the practice as slipping into Scarlett O’Hara mode.

‘I can’t think about that right now,’ Scarlett said. ‘If I do, I’ll go crazy. I’ll think about that tomorrow.’

Scarlett, I know the feeling.

I was Scarlett so often during the past three years, I may as well have been wearing a dress made out of drapes. I think I even started to speak with a southern accent. As long as I didn’t have any cancer related appointments on my calendar that day, I handed future stresses to God, and considered myself on cancer vacation.

Thank you, God, and thank you, Scarlett.

Number two is remembering to laugh.

Chemo days- Mac with her granddaughter.

Many of the things I heard during my battle were ridiculous. Like the day I was asked, ‘When would you like to start chemo?’ Um, let me think. Never? Others things were downright funny. Believe it or not, I am a woman who was once asked the question, ‘Where would you like your nipple?’

Then there was the day I was changing clothes in front of a mirror and noticed a dime sized blood-blister at the center of one of the incisions from reconstructive surgery. It was on the side where I’d had radiation, and my first thought was, Oh crap, what now?

My daughter-in-law took one look, and said, ‘Mac, that isn’t a blood blister. That’s your implant!”

By ten that morning, I was booked for emergency surgery. I’d already spoken to the doctor, the hospital, and my insurance company when the phone rang. The call was from my plastic surgeon’s office assistant.

‘We have a problem,’ he said.

‘What’s that?’

He went on to explain that the implant contact at the hospital was on vacation, so he hadn’t been able to procure the new implant I would need. They had implants on hand at the office, but with the doc in surgery all day, he wouldn’t be returning there before he was to meet me later that afternoon. A courier could be called, but we’d be cutting it close, time wise.

‘So, you want me to come get the implant?’ I asked.

‘I can’t believe I’m asking this, but yes. Would you mind?’

I could have said no, and let a courier deliver it, but hey, how many woman can say they’ve driven across town with their boobs in the passenger seat? So, I walked into the hospital with my new boob, and two spares, in a box.

‘What have you got there?’ the registering nurse asked as he led me back into pre-op.

‘I picked up the new implant from the doc’s office,’ I explained.

He opened the box and looked inside, the looked up, confused. ‘There are three in here.’

“Yeah, well,’ I said. ‘I think the doc is planning to make me into a Picasso.’

Remember to laugh.

Number three is the keeping of a journal.

As a writer, I suppose writing down my thoughts was a natural thing for me to do, but I’d never actually kept a journal before. The daily focus helped me deal with the wild swing of emotions I was experiencing. It also had an unexpected benefit.

Shortly before I began chemotherapy, I read back over my entries from those first few weeks. I was concerned at what I found. The entries documented my nearly complete absorption in the diagnosis. It was as if my real life, the one that had come to a screeching halt with that fateful phone call, had all but disappeared.

My words described the thoughts and fears of a victim. I had become a woman with a dark present, and a bleak future. Externally, I was waging battle. I had chosen the most invasive of surgeries, and the most aggressive of treatments, but internally, I seemed to be embracing defeat.

In contrast, interspersed throughout the dark entries in my journal, were a handful of positive memories that stood out like bright beacons of light. I was drawn to them. They were glimpses into the soul of the woman I used to be, before the diagnosis had left me paralyzed.

Disgusted, I made an effort to find more of those moments; like my wonder at the rainbow off my back patio one morning, or the beauty of the hummingbird that visited the feeder several times a day, or my laughter at some silly comment my granddaughter had made.

If you’ve received a similar diagnosis, I know what you’re thinking. Really, lady? You’re telling me to look for rainbows, hummingbirds, and silly comments from a toddler? I’m facing having a chunk of my breast removed, or the whole of it, and having toxic chemicals shot through my veins until I’m so ill I can hardly stand.

Yes, you are, and I’m the first one to agree, that sucks. But if you’re going to beat breast cancer, treatment is an inescapable fact. There’s no getting around it, and no matter what protocol is prescribed, some of it won’t be pleasant.

The next year, at least, is going to be jammed full of cancer related appointments, constantly reminding you of your diagnosis. The cancer battle can easily become a vortex, sucking you in, until nothing else exists. It’s debilitating and demoralizing, and human nature being what it is, it’s very easy to let yourself come to be defined by your cancer.

But by definition, fighting cancer is a battle. I didn’t want it to be my cancer. I wanted to defeat it. I wanted it gone.

It may seem insignificant to focus on the flight of a hummingbird in the midst of mastectomies and toxic treatments, but amazingly, focusing on the world beyond the vortex reminded me there was a whole existence out there that had nothing to do with cancer. It was a turning point for me. Thanks to those little blips of joy life delivered, I began to claw my way back from the dark, and I was able to take those first tentative steps toward the other side of the abyss. Toward victory.

As I write this, it has been almost four years since I found the lump that changed my life. It’s been a long and arduous adventure. I’ve experienced a range and intensity of emotions I never expected, and if you’ve received a similar diagnosis, you will as well. If you’re like me, you’ll know disbelief and fear, anger and frustration, but you’ll also know humor and hope.

Yes, being diagnosed with breast cancer is devastating. Yes, it’s frightening, and the treatment is horrendous. And yes, my life has changed. So will yours.

Keep in mind that not all changes are bad. Facing this kind of illness strips you down to the bare bones of life, and forces you to focus on what is important. In my case, that change has been a positive development on so many levels.

It goes without saying that family and friends come first, but since my diagnosis, I’ve also learned to allow myself my dreams. These days, I treat my love of writing with more respect. Five manuscripts later, six actually, as I finished another just this week, I’m seeing results. GIFT OF THE REALM, my first published novel, will be available this spring through The Wild Rose Press, with more to come.

I’ve met many women who have gone before me, and many of them faced this disease without the incredible medical and technical advances that we have at our disposal today. If there is one common characteristic I’ve seen in all the survivors I have met, it would be strength.

If you are just beginning your walk through this frightening disease, you probably don’t feel strong. Don’t beat yourself up if that is the case. You’ll get there.

Remember that everything they throw at you is doable. Take cancer vacations as often as possible. Allow yourself to take things one-step at a time, and try not to stress over what comes next. It will come whether you stress over it or not.

Remember to laugh, and try Scarlett on for size. She not only dressed well, she was a smart woman. Lastly, whether you know Him or not, God knows and loves you, and hears your pleas. His lap is always available.

Mac today, posing with a good friend.

So, close your eyes, take a deep breath, and take that first step toward conquering the abyss. I’m dancing on the other side. I’ll see you there.

Mac
You can find Mackensze on Facebook at
https://www.facebook.com/profile.php?id=100002947742754

Or on her blog at http://macsmadmania.blogspot.com/

And coming this spring, her first published novel,

Gift of the Realm will be available from The Wild Rose Press.

Beating Breast Cancer- My Story

07 Friday Oct 2011

Posted by lillygayle in breast cancer, breast cancer awareness month, breast cancer survivor, writing

≈ 12 Comments

October is breast cancer awareness month. And I am a breast cancer survivor. My journey began when I was 47 and had a screening mammogram that showed a lesion in my right breast.

The radiologist ordered a diagnostic mammogram for additional views. On Thursday June 28, I had a breast needle localization. On July 3, the day before leaving for the beach for an extended holiday weekend, I got the news. I had breast cancer–DCIS-ductal carcinoma insitu AND invasive ductal carcinoma.

Because there was an invasive component to the cancer, I had to have a second surgery–a lumpectomy. Even though I’m a mammographer and for some strange reason, had mentally thought of what I’d do in the event of such a diagnosis for years, I still wasn’t prepared. I just knew I wanted to survive–and survive with dignity. I documented my journey in a blog on My Space. Below are some excerpts from that blog–edited for content.

July 10, 2007
Today I had my first oncology appointment with this 12 year old oncologist who looks like Doogie Howser’s little sister. They have the rest of my path report back. My hormone receptors were negative.That means I can’t take tomoxofin. I can’t do the hormone therapy in conjunction with the radiation. What that means is, my ass is going to be bald…okay, maybe not my ass, but possibly my head! I’m going to have to have chemo! That little tiny, less than 1cm tumor was an aggressive little bastard with high proliferation margins and no hormone receptors, so if I want to decrease my chances of a relapse ten years down the road, then I’m going to have to take chemo.

July 11, 2007
I feel just fine….for now…until the damn chemo starts! Just goes to show you that health isn’t everything. You can feel like crap and be perfectly healthy OR feel great and be dying and not know it. There’s some paranoid food for thought.

July 12, 2007 Today is Thursday. The day before my second surgery and the day I realized what tomorrow is. I arrived at work just fine. Friday the 13. That’s when it hit me. I’m having a biopsy on freaking Friday the 13th!

July 13, 2007

Had my second lumpectomy, sentinel node biopsy, and port-a-cath placement.
I went to bed really late last night talking to my husband, Johnny. But I woke up this morning at 6:30 and it’s Friday the 13th and I’m in my own body. It’s in God’s hands.

Clean nodes and clean margins, God. Okay? Thanks.

July 14, 2007
Yesterday was my surgery. The nuke study was a bit embarassing. Dr. Stoll had to stick a needle in just above the aerola. He and Anthony were both in there, and I’ll see them both and have to look them in the face when I go back to work on Wednesday. So of course, I had to crack a joke. They stuck the needle in, which felt like one hell of a bee sting. As they were watching the radition uptake flow from the injection site into the nodes, watching to see where the concentration was highest, and talking as if I wasn’t there, and I said, “Gee, if I’d ever had fantasies about being with two men, this wasn’t it.”

Yep. I’m the queen of corny.
Around 3:30, they took me into OR. I was doing good until the anesthesiologist put that mask over my face. I freaked. I’m mildly claustraphobic, but it honest to God felt like she was putting a plastic bag over my head and telling me to take a deep breath. I remember crying and saying, “I can’t breath!” But the next thing I knew, I was in the recovery room and the surgeon was telling me the surgery was over and all 4 nodes had come back clear.

I have never known relief so profound.

July 16, 2007
Is it normal to worry about being too calm? Since finding out the nodes came back negative, it’s like this peace has come over me, as if I know everything is going to be all right. I’m putting everything in my blog because I have to get these thoughts down while they’re fresh because with all the drugs that have been pumped into my system, my memory isn’t exactly reliable.

My mother reads my blog and feels it’s of best seller quality. Trust me. I have no dreams of grandeur. Though I would love to publish a romance novel one day, and I do have an agent who will be submitting two separate manuscripts in the near future. I don’t get excited over these things any more. I have a drawer filled with rejection letters.

July 17, 2007

Adriamycin and Cyclophosphamide. (Cytoxin for short)The combo is called AC. My chemo drugs.

The oncologist gave me the choice of taking a 12 week regimen every three weeks or an 8 week regimen every other week. I’m going for the gold. Beginning Tuesday July 31, I will start my first round of chemo–once a week, every other week for eight weeks.

AC blocks DNA production in cells and inhibits enzyme replication so cancer cells can’t repair themselves. Since cancer cells reproduce faster than other cells, if there are any cancer cells left in my body, the chemo drug will stop them from reproducing or repairing themselves so they will die. That’s 8 weeks of chemo. Two months. I can survive anything for two months. Soldiers put up with a hell of a lot worse for a hell of a lot longer. I can do this!!

July 20, 2007
I cut my hair short so going bald won’t be such a drastic change.

July 31, 2007
My first chemo treatment.
First, they sterilized my skin and stuck a needle directly into my port, which was weird. I felt the prick go into my skin, but not the port, which is a disc under my skin that has a catheter that goes into my subclavian vein. Then they drew my blood to make sure my blood count was good, and checked my hemoglobin. Then we waited for the lab to mix my poison. Literally.

AC chemo drugs are so caustic the lab techs have to wear rubber protective gear and mix it under a hood with an exhaust. And I had to have a full 5ml drip of saline and a slowly pushed dose of decadron (steroids) a half hour before they could even start the chemo. The purpose of the steroid is so I don’t lose my appetite during chemo. Number one myth of chemo. Most patients do NOT lose weight on chemo. They gain it.

I got home at one thirty and took two nausea pills. I don’t feel sick, just very tired. My eyes are gritty as if I haven’t slept in days, but I’m good.My last thoughts before closing my eyes last night were, “Dear God, let me get through this first day of chemo without getting sick.” And he got me through it just fine. Thank you.

Aug 1, 2007
Well, I made it to work today and even put in a bit of overtime.
I went to bed exhausted, feeling hung over and woke up with a bad case of reflux that was a bit productive. but I didn’t really throw up. After poping a couple of nausea pills and my Prilosec, I felt well enough to go to work. I’m not bald, I’m not throwing up, but if the tingling sensation in my scalp is a harbinger of things to come, I expect that after my next treatment, I will have a few less folicles. Because I haven’t been making Selsin Blue commercials.

Aug 2, 2007
Everyone warned me, but did I listen? No. I’m hardheaded. Stubborn. All those other names I’ve been called on occasion. But putting in ten and half hours my first day after chemo was a bit too much because I didn’t last four hours today. It wasn’t nausea that did me in, it was exhaustion. And diarrhea.

Everything I ate the night before made a grand exit starting at about 2:00 a.m. I was wiped out before I ever got to work and for some reason, my teeth have started aching. Especially, my molars.Am I going to have to add losing my teeth to my list of worries? Will I then be overweight, middle-aged, bald, and toothless when this is done? Hell, as long as I beat the cancer I can always get dentures. At least my teeth will be straight.
But I’d sure like to keep my teeth.

Aug 5, 2007
The beach was just what I needed. But the trip was a beast. I get carsick now. We arrived at the camper late Friday night and I felt like hurling.
We spent Saturday afternoon on the beach. Me, set up under the umbrella with a hat and book like an old woman. Johnny sat in the sun a few feet away. But when I got hot, I waded into the surf to cool down and like to wore myself out just getting back to the chair. Later in the evening, I took a shower and a nap. After the sun went down, we walked back out on the beach and sat in the sand.
I felt grounded and centered. I felt the power of God Almighty surrounding me. And so I prayed. I prayed for strength and courage and then I let go and sat there with an open heart and soul and mind and didn’t pray. I just opened up for whatever God wanted to give back to me. And I felt at peace.

Aug 6, 2007
Learned a new word today. Nadiring. Sounds like Ralph Nadar only it has nothing to do with money. Wish it did. Nadir is the chemo killing my normal blood cells, specifically, my white blood cells (WBC’s) and making me feel tired and worn out. My Red Blood Cells (RBC’s) hematocrit, hemoglobin and platelet counts were acceptable. So, that’s good. At least I’m not anemic.Nadir occurs seven to ten days after a chemo treatment. The condition ends about the time they juice me up again. Oh, joy!

Aug 13, 2007
Around four o’clock today I was washing my hands and just happened to notice a lot of hair on my scrubs. I brushed it off and looked in the mirror and noticed that my hair was looking rather flat. I ran my fingers through it and strands came out in my fingers. Lots of strands. I ran my fingers through again and pulled out handfuls. I didn’t think it would start falling out until after the second chemo treatment. But apparently, for me, it has started falling out just thirteen days after the first treatment.

So, what is it with me and the number thirteen?

Aug 14, 2007
After supper, I took a shower and washed my hair, but it all started coming out in clumps and grossing me out. There was hair everywhere. Running down my back. Pooling at my feet. Piling up on the drain. It was nasty. As soon as I got out of the shower, I asked Johnny to shave my head. He swallowed hard and grabbed the clippers. My daughter Lauren looked as if she were about to cry. I didn’t shed a tear. It felt like taking control. I decided when I was going to go bald. And I did it that night.

Aug. 15, 2007
I wore the wig to work today but the thing is hot and mashes against my ears.I pulled that blasted thing on and off, showing my co-workers my shaved head, trying to get used to it myself–and giving my itchy scalp a chance to breathe. Not a single person made me feel uncomfortable. Had I worked anywhere else, I probably could have gone bald or worn a scarf. But women getting mammograms do not want to be reminded of the reason they were there: to screen for cancer. And I was a walking example of a not-so-good outcome. At work, it wasn’t about me. It was about my patients. I kept the wig on.

Aug. 16, 2007
An old high school friend took me for my second round of chemo. Johnny would have taken me to any of my appointments but I told him not too. He needed to work, stay occupied. We needed the money.

The Cytoxan drip tickled my throat and I got a little swimmy headed. When the nurse began pushing the adriamicin in, I got a burning sensation in the back of my throat but this time, I didn’t get the pain or sudden tightness in my chest.

Aug 17, 2007
The day after my second chemo treatment, I didn’t work. It was my scheduled day off and I took it. I did go to the oncology clinic for my neulasta shot, only to learn I’d gained three pounds since yesterday. Must be the rock that’s been sitting in my stomach since last night. I don’t feel nauseated exactly, but there is this weight in the pit of my stomach and I feel bloated and just all around “blah.”

Aug 20, 2007- Monday
I know what I’m supposed to do. I’m supposed to make myself get up and move around. I’m supposed to exercise, go to work, blah, blah, blah. Whatever. I just didn’t have the energy today to put on my wig and my happy face and go to work, so for the first time since all this started, I called in sick.

Last night, I even threw up. Not chunks, mind you, just wet nasty that grossed me out.

Aug. 30,2007
Finished my third chemo treatment. My daughter took me. She carried her book bag filled with books, convinced she would study. She didn’t.We talked.When we got home, I had reflux and felt tired. There just isn’t a drug in the world that’s going to make me feel good after being poisoned. But I’m not going to whine.

We don’t always know God’s plan and though I refuse to believe he “gave” me breast cancer, He knew it was coming a long time ago. Therefore, other things have fallen into place the way they have for a reason.

Yep. Things don’t always work out the way we want but sometimes they work out the way we need them to.

Sept. 7, 2007
I’m still tired and bit and I think I have an electrolyte imbalance.I’m waking up during the night with killer cramps in my calf muscles. I feel queasy if I don’t eat. Heavy, bloated, and uncomfortable if I do eat. Not true nausea so my pills don’t really help. I don’t feel good.

Sept. 13, 2007
Today was my last day of chemo. Mom took me. I got a little sick while the nurse was pushing in the adriamycin. I couldn’t tell if I was queasy from the chemo or sick from hunger. I can’t ever tell any more.

Sept. 16, 2007
Things I learned from Chemo:
1-Stay hydrated. Even when I went to bed, I kept a bottle of water nearby. Chemo burns the back of the throat like acid and without warning. And if the fire isn’t put out quickly, nausea soon follows. Then lightheadedness.
2-Don’t lie flat after chemo. For five days after a chemo treatment, I slept on the reclining end of the sofa. I learned that lesson after rushing to the sink with a bad case of early morning productive reflux after my first treatment.
3-Weight gain is inevitable. They give you fluids. They give you steroids. You don’t get much exercise. Bread becomes your best friend because it is one of the few foods that do not upset your stomach.
4-You feel sick if you don’t eat and sick if you do. But feeling sick on an empty stomach feels a lot worse. Take Prilosec if your doctor allows it.
5- Tastes change. Since those first two treatments when I had to sip a diet Coke because of the burning in the back of my throat, I haven’t been able to drink a soft drink/soda since. Carbonated beverages just don’t taste right to me any more, which is sad because I really love Diet Pepsi.
6- Stay positive. Keep a sense of humor, crack jokes, and pray. God didn’t do this to you. He is not testing you to see if you pass or fail. Sometimes bad things just happen. But God is interested in how you handle things in your life. Ask for his help getting through it, but don’t wallow in misery. That probably gets on his nerves.

No one knows at what hour death will come so we have to make the best of the time God has given us. I think that is the true test of God.

Sept. 19, 2007
I’m almost a week out from my last chemo and it’s still kicking my butt. I have a bad cough, my back hurts, and I’m short of breath. The doctor ordered a chest x-ray. I don’t have pneumonia but my immune system is vulnerable. They sent me home to rest.

Sept. 20, 2007
Tried to work, but got my lab results at lunchtime. My white blood cell count is Dangerously low and I have an infection. That same day, I was scheduled for my first radiation oncology appointment at Duke.

Sept. 25, 2007
Another lingering threat. The radiation oncologist didn’t like the results of my second excision biopsy. The medical oncologist believed chemo would destroy any remaining DCIS in the breast and did not think it was a problem. Apparently, my radiation oncologist didn’t agree. In the frozen slides from the second biopsy, there was DCIS in five of eight slides less than 1 mm from the surgical margin. There was only one DCIS on one slide in the original surgery. There shouldn’t have been any DCIS in the second biopsy. The possibility existed that my breast was potentially riddled with DCIS. And doctors usually recommend a mastectomy in a case like that.

I’d already had chemo to destroy any remaining DCIS in the breast. Lots of women have DCIS and never develop breast cancer, and I didn’t want mastectomy to be a knee jerk reaction to fear. The pathology report said DCIS in five of eight specimens but the oncologist didn’t know if it was a speck or a boat load.
He scheduled a breast MRI. And I waited, but I felt as if I were juggling knives.

“Do not let your hearts be troubled. Trust in God; trust also in me.”- John 14:1
Trusting in God would help me juggle those knives.

October 8, 2007
Dodged a bullet. The MRI was negative. I didn’t need a mastectomy. The decision was mine. I chose to keep my breast and to start radiation treatments.

October 10, 2007
Had my treatment planning at Duke. First they made a mold and shaped it to my body. When it hardened, my left ear was stuck inside the mold, my head slightly turned away from my body so that when the treatments begin, my body will be in the exact same position every time.
Next, they marked off areas on my breast with strips of radiopaque markers and put me in the CT scanner. Once the oncologist and dosimetrist mapped out my treatment plan,they marked me, covered the marks with tape, and I was able to pry myself out of the mold and get dressed.

Radiation was going to be five days a week for six weeks. At least I wasn’t having a mastectomy. And I could have the actual treatment at a local hospital.

Oct. 15, 2007
I don’t expect everyone to understand why I post a blog. I don’t do it for others or to see how many people read it. I do it for me. It’s cathartic. It keeps me from getting depressed or upset or from losing my sense of humor. I’m just trying to survive breast cancer. It doesn’t just go away. I don’t think it’s going to kill me. I have to believe that. But cancer is unpredictable and I just started radiation today. It will last for 6 weeks.

Oct. 16, 2007
My second radiation treatment didn’t take very long but afterward, I met with my new radiation oncologist.
The good news is that without even trying, I have lost four pounds since getting off chemo. The bad news is my lungs still haven’t fully recovered and the radiation could possibly do more damage. But at least I’m alive.

Oct. 24, 2007
Johnny and I went to the beach this weekend. We held hands and walked on the beach. I got very emotional and had a good cry and wonderful conversation with my husband. If I didn’t love him already, I would have fallen in love with him all over again. It’s nice to have a man say he loves you. Nicer still when he tells you he’s proud of you or that he admires your strength and courage.
Then again, the feeling is so very mutual.

Oct 28, 2007
I am so tired of looking in the mirror and seeing just my face and shiny bald head.

Oct. 31, 2007

Halloween. My brother brought my nephews by to trick or treat. And made my week.

Nov. 14, 2007
Nine treatments left to go. I have radiation burns to the chest from mid line of the sternum to the center of my right breast and from the nipple to about six inches below the clavicle (collar bone.). I am also burned to a lesser degree on the lateral side of my right breast. The burn is red like a sunburn, but the skin is raised and feels like sandpaper. It hurts. But Silvadene cream is a miracle drug!

Nov 15, 2007
Had my first booster treatment today. Concentrated, directed radiation to the tumor bed. I have eight more and I’m Done.
Maybe then, my life can get back on track and I won’t feel so tired all the time.

Nov. 22, 2007
I have a bad radiation burn under my arm. And it’s my first Thanksgiving without Jennifer–my married daughter who lives in Germany. I missed her so much today I cried. But I’m thankful I had my mammogram when I did. I’m thankful I didn’t have a mastectomy. I’m thankful I did as well as I did with chemo. I’m thankful my lymph nodes were negative. I’m thankful for my husband and how incredibly supportive he’s been. I’m thankful for the love and support of Lauren and Jennifer. I’m thankfulmy cancer has made me closer to my mother. I’m thankful my cancer is curable. I’m thankful I’m almost finished with radiation. I’m thankful for the support and encouragement of family and friends both on and off line. And I’m thankful to God for giving me the courage and strength I need to fight and win the battle against breast cancer.

Nov. 27, 2007- Tuesday
My next to the last radiation treatment. I breathed a sigh of relief. After tomorrow, I’d be done. Unless the cancer came back before five years was up. Then I’d have no choice but to have a mastectomy. Possibly bilateral, depending on how quickly it came back. But when the doctor told me I was finished with treatments, I broke down and cried. I hadn’t really let go and now that it was over, the emotions came in a flood. I’d been such a control freak about it and now that it was almost over, it hit me. I’d made it through chemo and radiation. I beat cancer.

October 14, 2011
My last treatment was anti-climatic. But my battle isn’t over. Since that day in 2007, I’ve had multiple oncology appointments with both the radiation and medical oncologist. I had mammograms every six months from June 2007 until February 2011. I’ve had two more MRI’s and a brief scare with the left breast. But a subsequent MRI guided biopsy proved it wasn’t cancer. Still, I sometimes wonder if I made the right choice by not having a mastectomy. Sure, I can still have mammograms to check for breast cancer. But if I didn’t have breasts, I wouldn’t worry. Then again, without breasts, the cancer could come back in my chest, bones, or other organs. So, there is no right choice. There’s just the choice I could handle when I needed to make the decision.

As bad as all this was for me, I think it was worse for my husband. I knew what I was thinking and feeling. He could only guess. And he was never sure if I told him the things I did because it’s really how I felt or if I was just trying to save him from worry. To be honest, I don’t know either.
Today, I no longer see my oncologist. But I see my primary physician at least every six months. And this February will be my first screening mammogram since June 2007. My cancer was a triple negative. It could come back. But I’ve been through the fire and survived the burns. And I kept my faith.

To Screen or not to Screen

29 Friday Oct 2010

Posted by lillygayle in breast cancer, Dr. Lori Gillespie, Lilly Gayle, OUT OF THE DARKNESS, radiation oncologist

≈ 4 Comments

Should women under fifty get a screening mammogram? As a mammographer and breast cancer survivor diagnosed by a screening mammogram at age 47, I say YES!

But according to http://www.thebreastcancersite.com/clickToGive/mammogramguidelines.faces?siteId=2#USPSTF the U.S. Preventive Services Task Force (USPSTF,) a government-appointed, independent panel of medical professionals whose recommendations inform decisions by health professionals and insurers claims:

The benefits of detection and early intervention by screening with film mammography reduces breast cancer mortality, with a greater absolute reduction for women aged 50 to 74 years than for women aged 40 to 49 years. The strongest evidence for the greatest benefit is among women aged 60 to 69 years. They also say that for biennial screening mammography in women aged 40 to 49 years, there is moderate certainty that the net benefit is small and they do not recommend it.

But the truth is, every year 1-8 women will develop breast cancer. The statistics I learned while studying for my mammography boards were that 70% of all breast cancers are in women over age 50. One percent of all breast cancers are found in men. So, that leaves 29% of women younger than 50 who will develop breast cancer.

And that brings me to today’s guest, Dr. Lori Gillespie, a Radiation Oncologist and my friend.When I was first diagnosed with breast cancer, Lori was one of the first people I contacted for advice. And words alone can never express just how helpful and encouraging she was.

Lori, as a medical doctor and radiation oncologist, what is your opinion of the new USPSTF guidelines for mammography?

Lori-

Most organizations are ignoring the USPSTF guidelines and absolutely urge women to have a screening mammogram before age 50. The American Cancer Society (ACS), the American College of Radiology (ACR) and the American College of Surgeons recommends annual screening mammograms starting at age 40. Also high risk patients should have a breast MRI. High risk means BRCA1 or BRCA2 mutation, or a first degree relative with these mutations. Prior chest irradiation between ages 10 to 30 such as with a mantle field for Hodgkin’s lymphoma is considered high risk. Also certain genetic diseases such as Li Fraumeni, Cowden or Bannayan-Riley Ruvalcaba syndromes are high risk.

Lilly-
Okay, now a tough question and one you helped me answer. Mastectomy and chemo vs. lumpectomy and radiation or lumpectomy, radiation, and chemo. I had a lumpectomy, radiation, and chemo because I had DCIS and an invasive carcinoma. I know there are as many different types of beast cancer as their are types of breasts. I know you’re not a breast surgeon, but you do help women make informed choices. So, what are some of the criteria you use when giving woman choices between lumpectomy and radiation or mastectomy. And do you ever recommend a mastectomy and radiation?

Lori-

The original NSABP B-06 data compared mastectomy VS lumpectomy alone VS lumpectomy plus radiation therapy (XRT). The lumpectomy alone patients had an in breast failure rate three times higher than the lumpectomy plus XRT patients.

(41% VS 12%) This is why adding XRT to lumpectomy is standard of care today.

The National Cancer Care Network (NCCN) recommends post mastectomy radiation when the tumor is > 5 cm in size, > 4 lymph nodes are involved and when surgical margins are < 1 mm. More recent data advises strong consideration for post op XRT when any lymph nodes are involved.

Lilly-
What are your feelings on breast reconstruction? Is there an age you believe is too old? Too young? Too soon after diagnosis? And what types of reconstruction are best? TRAM flap? Implants?

Lori-

There is no age limit regarding lumpectomy VS mastectomy. Some young women want a mastectomy. Some older ladies want to save their breast at all costs. It is really patient preference. As far as the timing of reconstruction, some patients want to go to sleep with a breast and wake up with a breast after their mastectomy. As a Radiation Oncologist, I like to have the final pathology report back before breast reconstruction. Whether the patient has a permanent implant OR tissue expander VS TRAM flap OR latissimus dorsi reconstruction, the decision is completely between the patient and their plastic surgeon. Negative margins are always preferable. It’s more difficult to adequately irradiate a reconstructed breast sitting on top of a positive margin. I also warn women that irradiation of a permanent implant has about a 30% contracture rate over time, meaning the implant can become rock-hard and ultimately need to be changed. When patients come for chest wall irradiation after mastectomy alone, I ask them to wait at least 6 months after completion of XRT before having a reconstruction. As far as follow-up is concerned, it is much easier to clinically detect a local recurrence on the chest wall as opposed to in a reconstructed breast.

Lilly-

Thanks so much for taking the time away from your busy schedule to guest on my blog.

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More About the Pink

15 Friday Oct 2010

Posted by lillygayle in breast cancer, Breast Cancer Awareness, Caroline Clemmons, Lilly Gayle, paget's disease of the breast, romance novels, The Wild Rose Press

≈ 7 Comments

Breast Cancer awareness month continues with Wild Rose Press author Caroline Clemmons.

Lilly- Welcome Caroline. It’s always a pleasure to have you on my blog.

I know you’ve never had breast cancer but you had thyroid cancer and your daughter has been fighting a battle with a very rare and little known form of breast cancer: Padget’s disease of the breast.

Why don’t you tell us a bit about your personal battle with cancer.

Caroline-
Lilly, first let me thank you for hosting me on your lovely blog. My daughter’s and my cancer battles emphasizes the advice to everyone: You know your body and must be responsible for your own health! I remember a time when I assumed every doctor knew his or her business. Never take that knowledge and ability for granted! Just as there are good policemen and bad, there are careful doctors and slapdash ones. My primary care physician is an extraordinarily good doctor who seems to actually care about his patients. He had sent me to a radiologist because I felt there was something pressing in my throat on the right side and his examination concurred. The radiologist had me drink water while being scanned, but declared nothing was wrong. Later, I had an MRI of my chest for another problem, but nodules on my right thyroid showed up. My doctor sent me to an endocrinologist with a good reputation. She biopsied the largest of four nodules. Readers, this is wrong! Anytime you have nodules on your thyroid, EACH nodule should be biopsied. The results of the one came back as simply fibrous tissue, and she said there was no point in having surgery unless they bothered me or obstructed my airway. Well, they did, but I decided to wait a few months until it was more convenient. Dumb! My primary called and told me that he didn’t feel comfortable with her diagnosis (not exactly what he said, but what he meant) and sent me for a CT scan and to see a throat surgeon. The surgeon didn’t say the endocrinologist was lax, but did say he always biopsied each nodule. After my surgery, the biopsy of two nodules came back follicular cancer. Since they can’t scrape away each cell of thyroid tissue due to involvement with important things like carotid arteries, larynx, etc., I had radioactive iodine therapy. Here I was fortunate. A friend in my book club (whose son and daughter are both physicians) had been diagnosed with thyroid cancer a couple of months before my surgery. She told me about her endocrinologist, Dr. Darren Lacken in Fort Worth, who has been chosen as one of the 100 top endocrinologists in the U.S. He administered the large dose of radioactive iodine which required home quarantine from my husband and our pets for a short time. Now that wasn’t hard–I stayed in the bedroom with laptop and books, while my husband brought food and drink to the door. It was annoying because he had to sleep in the guest room and I couldn’t leave our bedroom. Six months later, I received a much smaller dose which just required no one get closer than two feet from me and that I avoid pregnant women. In November, I get another of the small doses and another PET scan. We believe the cancer cells have been killed, but want to be positive. If one has to have cancer, thyroid cancer is the least threatening, especially if caught early. There are precautions, of course–one is no massage above the hips. The minute the endocrinologist said that, I longed for a full body massage. LOL Isn’t that our nature?

Lilly-
You’re a real fighter. I’m surprised you had a swallowing study instead of a thyroid ultrasound from the beginning. From what I remember from x-ray school, that’s usually done as soon as the lab work or physical exam show a problem. What an ordeal! It’s a good thing both you and your doctor were vigilant. But I imagine watching your daughter’s struggle with cancer was even more of a challenge. Can you share a bit of her story?

Caroline-
You are so right, Lilly. I was devastated when I learned my oldest daughter had breast cancer! Anyone with children knows that having bad things happen to our children is a hundred times worse than having it happen to us. My daughter called me to say she had this sore on her nipple that wouldn’t heal. She thought she must have scratched herself during her sleep and that her bra irritated it and kept it from healing. I told her to see her doctor and we agreed you can’t take chances. Her primary care in the small town in which she lives pooh poohed it. She insisted on a mammogram, which revealed a small cloud on the end of her breast. Her doctor suggested waiting six months and repeating the mammogram to see if there had been a change. About that time she heard the father of a friend had died. Even though she’d lost touch with this friend, she attended the funeral. At the funeral, she was shocked to see her bereaved friend wearing a turban. When they talked, the friend explained she had breast cancer that wasn’t caught in time and was undergoing chemo. As the friend explained the symptoms, they were exactly the same as those of my daughter. The friend told her to forget about her primary care and go immediately to her breast surgeon, Dr. Sally Knox at Baylor Hospital in Dallas. Dr. Knox immediately scheduled a biopsy. It was positive for Paget’s breast cancer (apparently Paget was a busy guy and there are other Paget cancers). This is an exceptionally aggressive cancer which spreads rapidly. My daughter’s was caught early enough that she had a lumpectomy. The oncology radiologist told us that if my daughter had waited six months as her primary doctor requested, the cancer would have been into her chest cavity/lungs.

Lilly-
Paget’s disease of the bone is a chronic condition that results in pain and deformity and fractures of the bones. It is rarely diagnosed in patients under forty and should not be confused with Paget’s disease of the breast which is a rare form of breast cancer that begins in the milk ducts of the nipple.

Paget’s disease of the breast presents with fairly benign symptoms as you describe your daughter having. A red itchy nipple that is often mistaken for irritation, inflammation or an infection. But it doesn’t heal. And there can be a bloody nipple discharge, crusting and oozing associated with the irritation. That’s never a symptom you should ignore.

Women can have nipple discharge for a variety of reasons, some related to elevated prolactin levels or even a pituitary tumor, but never NEVER ignore a bloody nipple discharge. And if the skin of your breast looks and feels like an orange peel, see a doctor immediately. Peau-de-orange is a classic sign of Paget’s breast disease.

Unfortunately Paget’s Disease of the breast does not always show up on a mammogram. Sometimes it doesn’t show anything but thickened breast tissue or an increase in density, such as the “cloud-like” appearance Caroline described.

Whenever there is a palpable lump or physical change in the breast, a mammogram should be followed immediately (or as soon as possible) with a breast ultrasound. And never wait six months to follow up on a breast complaint if you don’t feel comfortable doing so. Ask for copies of your x-rays and take them to another doctor or hospital for a second opinion.

Another often misdiagnosed breast cancer is Inflammatory Breast Cancer. IBC is a rare, extremely aggressive breast cancer characterized by symptoms resembling a rash, skin infection, or “bite” that won’t heal. IBC can occur in women at any age and even, much more rarely, in men.

For more information on these aggressive type breast cancers, please visit: http://www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC

But enough scary news. Breast cancer is no longer the death sentence it once was. When caught early, most breast cancers are curable. And five years is supposedly the magic number for being considered “cured” of the disease. But the fear never abates and the reality with any cancer is: It can come back. So we must be diligent with our own health care and make sure we stay informed and aware. And positive. Faith and a positive attitude make all the difference. Wouldn’t you agree?

Caroline-
I certainly agree! My daughter has been cancer free since five years ago April, and as you said, this is considered the “magic” number. I think she feels it’s only in remission. Because of the fact that Paget’s breast cancer usually pops up in the other breast eventually, she feels as if she’s waiting for the other shoe to drop. However, she is careful about her diet, takes vitamins, and is vigilant. Again, the bottom line is that we know our bodies and when there’s been a change! Also a positive attitude can save your life! Neither of us feels we were doomed to painful death, for instance. We both have strong faith that God is watching over us. Now let me say that I am NOT implying that God is not watching over those who die of cancer. Not at all! My daughter and I are merely the lucky ones. I believe it was God who put my daughter back in touch with her friend. I believe it was God who arranged for my friend to send me to a top endocrinologist–one of the few who specializes in thyroid problems. My favorite Bible verse is Jeremiah 29:11-13, “For I know the plans I have for you, declares the Lord…plans to give you hope and a future.” I want to emphasize that, as you said, we must be diligent with our own health care. I believe that vigilance is a part of God’s plan. Blogs like yours help spread information to enable that vigilance. Good for you!

Lilly-
Oh, I agree! I do not think God gives anyone cancer. And he doesn’t just save the faithful or let the unfaithful die. Cancer, like other tragedies in life just happen. But God does perform miracles. He doesn’t use magic. He uses people and science. And he puts those people in our lives when we need them the most.

Life isn’t always easy but it’s always an adventure. And you’ve had some good luck recently with your writing. Haven’t you Caroline? Tells us a bit about some of your recent releases and where we can find them.

Caroline-

Thanks for asking. How long do I have? (said with a cheeky grin) I’m ecstatic that THE TEXAN’S IRISH BRIDE received 5 Hearts from The Romance Studio and is a Top Pick from Night Owl reviews. You can buy it at www.thewildrosepress.com/caroline-clemmons-m-638.html I enjoyed writing this book even though it involved a ton of research. It’s set in Texas, as all my books are, either partially or totally. The time is 1885 in the central hill country, which is mainly ranching with a few apple orchards and other fruits or vegetables. My website is www.carolineclemmons.com and blog is http://carolineclemmons.blogspot.com I’m also part of a new blog for those who write books set West of the Mississippi River, http://sweetheartsofthewest.blogspot.com

Lilly-
How about a blurb and an excerpt?

Caroline-
Certainly!
Cenora Rose O’Neill knows her father somehow arranged the trap for Dallas McClintock, but she agrees to wed the handsome stranger. She’d do anything to protect her family, and she wants to save herself from the bully Tom Williams. A fine settled man like Dallas will rid himself of her soon enough, but at least she and her family will be safely away from Tom Williams.

Texas rancher Dallas McClintock has no plans to wed for several years. Right now, he’s trying to establish himself as a successful horse breeder. Severely wounded rescuing Cenora from kidnappers, Dallas is taken to her family’s wagon to be tended. He is trapped into marrying Cenora, but he is not a man who goes back on his word. His wife has a silly superstition for everything, but passion-filled nights with her make up for everything. Ah, but what is he to do with a wife and her wild Irish family?

Here’s a G excerpt from immediately after Dallas and Cenora’s wedding. Aoife is Cenora’s mom:

Dallas raised his gaze where Aoife directed. Four girls danced, but only one drew his attention. Shoulders straight and feet flying, Cenora met his glance, then broke away from the other dancers to perform only a few yards from him.

Catcalls sounded nearby. She ignored them but gave a toss of her head. Her hair had come unbound, and her act sent her fiery hair awhirl. Light from the blazing campfire cast an aura-like radiance around her. Lantern glow overhead reflected her eyes sparked with merriment, challenge, and something mysterious he couldn’t name.

No longer the delicate china doll, her wild beauty called to him, mesmerized him. He visualized her brilliant tresses spread across a pillow, her milky skin bared only for him. His body responded, and savage desire shot through him. Surprised at the depth of his reaction, he wondered if her performance in bed would parallel the unbridled nature of her dance.

Good Lord, could this glorious woman truly be his wife? And if so, heaven help him, what on earth was he to do with her?

Lilly-
This isn’t your first visit to my blog but The Texan’s Irish Bride sounds better every time I hear about it or read one of your fabulous excerpts. It’s definitely on my list of books to download to my Nook!

And, you have a 4.5 star review on Night Owl Reviews. http://www.nightowlreviews.com/nor/Reviews/Terri-reviews-The-Texans-Irish-Bride-by-Caroline-Clemmons.aspx

I’m thrilled for your writing success and I wish both you and your daughter many years of good health. Thank you for sharing your stories.

Caroline-

Lilly, Thank you so much, and thank you for doing your part to promote cancer awareness. I’ve enjoyed our visit.

Lilly-
For more information on thyroid or breast cancer, please visit: www.cancer.org

All About the Pink

08 Friday Oct 2010

Posted by lillygayle in breast cancer, breast cancer awareness month, breast cancer survivors, Jennifer Johnson, Lilly Gayle, love stories, paranormal romance, romantic comedy, The Wild Rose Press

≈ 9 Comments

Today I’m continuing my All About the Pink blog tour. So, let’s welcome author, Jennifer Johnson.

Lilly-Welcome Jennifer! But before we get into a discussion on something as serious as breast cancer, why don’t you tell us a bit about your latest release, Rescue Me.

Jennifer-Before I talk about Rescue Me, I want to let your readers know I have two published novels with The Wild Rose Press, The Jinx and The Clergy Affair. Both are comedic romances.

Lilly- I love romantic comedies! They make for great movies. So, tell us something about The Jinx. Got a blurb and a buy link?

Jennifer–

Talk about a house call! All Ellen wanted was to get her ring out of the bathtub drain; what she got was a rude plumber who made her clean out her closet, bled all over her bedroom carpet and fainted. Then refused to let her pay her bill! What’s with this guy? This guy – Rick Braswell – is having a midlife crisis at thirty. Ever since making a house call for that crazy Ellen Anderson, Rick’s crisis has turned into crises. He’s having the worst luck of his life, and every accident and injury involves Ellen. And yet there is something about her that makes Rick want to beat the jinx; so he can love the woman.

You can find The Jinx at http://www.thewildrosepress.com/the-jinx-paperback-p-3289.html

Lilly- That sounds like a fun read. What about The Clergy Affair? How about a blurb and buy link on that one?

Jennifer-

Reverend Deborah Reynolds wasn’t expecting to fall for-or over-Sam Perry, one of the groomsmen at the wedding she was officiating. But when Sam answered her door early the next morning and greeted the biggest gossip in town, Deborah found herself in hot water with her congregation. She never imagined soon after she would be flying cross country with Sam and broadening her horizons by visiting a nudist beach, learning the paths of ants, and falling in love. But there were still her life and vocation at home to consider. Ministers don’t believe in Prince Charming, don’t wear brightly-colored lipstick, and certainly don’t steal kisses in the church pantry!

Can Sam Perry convince the Reverend that even a woman of the cloth can have happily ever after?
You can purchase The Clergy Affair from http://www.thewildrosepress.com/the-clergy-affair-p-3575.html

Lilly- This one sounds good too. So now, let’s hear about your latest release, Rescue Me.

Jennifer-
My current release is Rescue Me, published by Turquoise Morning Press, is a southern small town story about picking up the pieces of one’s life and making those pieces into something beautiful.

Lilly- Can you give us a blurb and an excerpt?

Jennifer-Sure, Lilly, thank you.
Blurb:

Sitting in a U Haul truck of her parents’ front yard at midnight, Amy Mann decides it’s time to break it to them she’s divorced from her husband and moving back home with her seven year old son Toby. As Amy settles into her hometown, she has a plan to get out of debt, get her college degree, and put her life together.

Enter Captain Riley Pennimon, local firefighter and superhero to Amy’s son. Riley is kind, brave, and civic-minded. The captain does not fit into Amy’s putting-her-life-together plan, and yet he looks way too good looking without a shirt. Toby has decided Riley is just what they need for a happily-ever-after.

Can Amy make peace with the demons of her mistakes and let the captain rescue her?

Can Riley let go of the pain of his past and grab onto the family he’s always wanted?

Excerpt:

“It doesn’t have to be like this, you know,” Riley said in a casual manner as he turned the key in the lock.

“Like what?”

He turned his attention from the lock to her. “You biting my head off every time you get within snapping distance.”

“Look. I know what this is all about. My dad wants to fix us up. If you hadn’t noticed, he invents reasons for you to come over. Toby and I do fine. I’m going to pay off my credit cards, go back to school, and make a life for myself and my son. I’m not interested in a relationship.”

“Okay.” The door swung open, and Riley motioned for her to go in.

His acquiescent attitude stole a bit of her nerve. “It’s not that…you know…I mean…you’re good-looking in a hot, kind-of, way, but I’m not into sex with a man…”

Riley bit his lip, mirth on his face and a dimple in his cheek.

“Or anybody. I don’t have any sex drive. I haven’t for a long time since Toby was a baby, so it’s nothing personal, and it’s not funny.” She shut her stupid mouth wishing she could take back every single embarrassing word. She closed her eyes so she wouldn’t have to be humiliated further by seeing Riley laugh at her. A moment later when she opened her eyes ready to glare at him, her heart skipped a beat at the hungry expression on Riley’s face.

And not for food.

For her.

It was the look of the lion as he caught sight of the gazelle. Fear fluttered in her stomach, and something else, too. A long forgotten urge budded and opened. The air crackled between them. Amy reached her hands up to feel the heat of her face and recognized the urge.

Lust. Desire.

Oh, no.

Time for the gazelle to run.

Riley’s eyes narrowed as if he knew she was about to flee. He took the two steps which separated them, put his arms around her, lowered his head, and touched his lips to hers.

Zing. Zing. Zing. Nerve endings throughout Amy’s body fired rapidly, deliciously. Riley’s mouth moved over hers, and Amy greedily returned the kiss, testing, tasting, awakening. She groped his back, feeling the firm flesh she had spied from her bedroom window. Riley’s masculine scent surrounded her. His large frame engulfed her, giving her a sense of power and yet, his touch was careful, cherishing.

With his hands on her upper arms, Riley gently pushed her away. Through passion-hazed eyes, Amy blinked at him.

Huh?

Riley dropped his hands leaving Amy’s heated skin bereft. She took a shuttering breath.

Riley shook his head as he studied her. “No. It’s not funny, but it’s also not true.”

He strode toward the firehouse, and Amy watched him leave noticing his rumpled and untucked shirt.

Her hands had bunched up the material and kneaded the bare skin of his back. She was the culprit. Oh, boy, was she ever.

Lilly- Oh my! This sounds hot. And it’s definitely going on my “must read” list. Where can we find it?

Jennifer-Rescue Me is available digitally and in trade paperback. Here is the link to my publisher’s site: http://www.turquoisemorningpress.com/2009/09/rescue-me.html. Rescue Me can also be purchased at Amazon in both formats and the digital download at most internet books sites including those listed on the right of the link I’ve included. The ISBN is 978-1935817161.

Lilly- I wish you mega-sales with all these wonderful books. Now, down to business!

As you know, October is breast cancer awareness month and this month is all about the pink. So, I’m giving you the floor, so to speak. I want to hear your breast cancer story. I understand you didn’t personally suffer from the disease, but someone close to you did. And as anyone who’s been touched by this horrible disease knows, it doesn’t just affect the patient, it affects everyone close to the patient. So, tell us your story.

Jennifer-About seven years ago a close friend of mine found a lump in her breast. She received radiation, and was declared in remission. Five years later she went for a mammogram and cancer was found in the other breast. The doctor did a lumpectomy. We were thankful that this was all that was needed, but about a week later they called her back and told her she would have to have the breast removed because the cancer was more widespread than they thought. I advised her to ask about having a double mastectomy since she had already had cancer in the first breast, but the doctor told her it “wasn’t necessary”. In talking with this doctor, he also told her reconstructive surgery wasn’t an option for her because of her age. She is in her late sixties. I thought this was outrageous. If she wanted reconstructive surgery, I don’t care if she was a hundred and sixty seven, he should have explored that option with her. But she isn’t assertive like I am. She just accepted what he said without pushing him for other options. Unfortunately, my friend doesn’t live very close to me so I couldn’t go to the doctor with her and pound his head or ask the hard questions she wasn’t comfortable asking.

After the mastectomy, it was very hard for her to accept this new image of who she was, but I kept telling her how beautiful she was because that missing breast meant that she was still here for me to love her. When she showed me the scar, I was honored, because I know at that time she felt vulnerable and ugly. But that scar was the most beautiful pink line I’d ever seen because it meant she was still alive. Since she did not have reconstructive surgery, we celebrated her prosthetic bra and the fake boob in it. And thank the Lord for how realistic it feels. That’s right, I felt her fake boob.

I still get angry when I think that the doctor dismissed her wishes about what would be the very best for her. Even if taking the other breast wasn’t necessary, if it helped her sleep better at night because she wouldn’t worry about it coming back a third time, then it would be necessary. You know? I’m not sure what I could have done differently with my friend as I tried to encourage her the very best I could. My hope in telling this story is to implore every woman to be assertive with your doctor, ask questions, and know it is within your rights to ask for a second opinion. This is the only body we have, so, by God, we better fight for it. And if some doctor disagrees, well, I sure as heck am going to wipe the dust off my boots from that doctor’s office, and never go back. I will find a doctor who will work with me and respect my thoughts about my body.

So, that’s my story, Lilly. And I thank you for giving me the opportunity to tell it here.

Lilly- Your friend is lucky to have you. I can’t tell you how much that type of moral support helps when you’ve just been told you have breast cancer. As a breast cancer survivor and a mammographer, it angers me to hear a doctor–any doctor–tell a woman she is too old for reconstructive surgery.

Unless a women was in poor health before the cancer diagnosis or there are contraindications such as an underlying heart or lung condition that would preclude a non-lifesaving surgery, then there is no such thing as “too old.”

I’ll bet if that same doctor underwent a penectomy for carcinoma of the penis, he’d want an implant, regardless of his age! And yes, penis cancer is very real and a penectomy is the term for a penis amputation.

It’s not about vanity. It’s about healing and feeling whole and well again.

While prosthetic breasts are fine for some women, others feel disfigured without reconstructive surgery. And women have so many choices today from saline and silicon implants to TRAM flap surgeries that use tissue from the stomach to create a new breast. They can also use tissue from the back if the patient has had prior abdominal surgeries.

After a mastectomy, women deserve the right to chose whether or not to undergo another surgery, regardless of the doctor’s notion of how old is too old for breasts.

As for your friend wanting a bilateral mastectomy, I can’t blame her. Not as a mammographer or a breast cancer survivor. Women with perfectly healthy breast but who carry the BRCA gene (the hereditary breast cancer gene) often opt for prophylactic mastectomies to avoid developing breast cancer in the future.

So, if your friend wanted a bilateral mastectomy after she’d already had cancer in both breasts, then her doctor should have taken her concerns seriously and discussed her options.

One thing women of all ages need to remember: If you are not comfortable with your doctor’s recommendations or don’t feel as if he/she is taking your concerns seriously, seek a second opinion. It is your breast. Your right. Your health. And your life. And we all want to be survivors.

Lilly Gayle Romance

Category Archives: breast cancer

Get Your Pink On!

The Importance of Cancer Support Groups

Toni V. Sweeney’s Breast Cancer Message

Breast Cancer Screening Update

Conquering the Abyss by Mackenzie Crowne

Beating Breast Cancer- My Story

To Screen or not to Screen

More About the Pink

All About the Pink