the stories

 

» Dr. Denise Gay, 38, is a Naples periodontist and partner with Dr. Jeannie Moran in Olde Naples Periodontics, where she has been established for five years. Like many others, her life and Dr. Moran's have both been branded by breast cancer.

This is what happened to me. In January 2002, I lost my mother. She had developed breast cancer when I was in my 20s and she was in her 50s — it was post menopausal (less aggressive), so we thought it had been completely removed.

» Dr. Denise Gay, 38, is a Naples periodontist and partner with Dr. Jeannie Moran in Olde Naples Periodontics, where she has been established for five years. Like many others, her life and Dr. Moran's have both been branded by breast cancer.

Perhaps stress may have contributed to what happened — I believe it has a significant negative effect on people. My parents divorced and it took a toll on her. She raised four girls, we are all very close in age, and she was a very health conscious person — my grandfather was physician. She was our rock.

She had both breasts removed. Then eight years later, when she was 61, she had pain in her tooth. She had broken some ribs, too, and we thought it was just arthritis —there was a history in my mother's family.

But the breast cancer had metastasized to her bones. She died on Jan. 6, 2002 and it was so tragic for me and my family. She was everything. She pushed my education. It's a very passionate loss for me still.

So I wear a breast cancer pin every day. My mother walked the Susan G. Komen walk the whole eight years she had the disease, in Connecticut where I'm from. When I got here (in 2004), I went to Miami and did that walk for two years until they developed the Coconut Point walk here. And my practice is a bronze donor in honor of my mother — she was Mary Cathleen Rofrano Kendra.

» Cynthia Mott, 46, a sometime resident of Lee County, is a writer, student and Florida native who befriended Cynthia Snuffin when the two worked in the tomato brokering business together.

The year after I came to this practice, in 2005, my partner, Dr. Moran, who went for mammograms regularly, found a lump on her own self exam.

My mom, by the way, when she had the breast lump originally, she had my sister feel it and say, listen, this is what you look for in case you ever have to, OK?

But Jeannie had treatment in 2005. She took a little time off but not much. She's been in remission four years, and nothing has spread to the lymph nodes.

And both of us walk every year. » Cynthia Mott, 46, a sometime

» Wendy Avner, 57, a south Lee County resident and her Chicagobased daughter Lindsay, 27, founder of the highly acclaimed organization Bright Pink, both carry the mutant gene BRCA 1 (Breast Cancer 1). This gene threatens not just a single woman with an extremely high risk of both breast and ovarian cancer — a mother — but forces daughters to face a 50-50 chance of inheriting the same

resident of Lee County, is a writer, student and Florida native who befriended Cynthia Snuffin when the two worked in the tomato brokering business together.

» Janet Gainey, 62, spent 25 years teaching elementary school in Massachusetts before moving to Bonita Springs five years ago. A 20-year survivor of metastatic breast cancer, her disease recurred 14 years after its initial discovery, spreading most recently to her lungs and spine. Now part of an 20-month experimental drug program in which she is taking either a placebo or a new and untried medicine (she chooses not to name the drug or provide more details), she is free of tumors, and has cancer cells only in her blood.

When her friend was diagnosed with breast cancer, Ms. Mott tried to shoulder the experience with her, even sharing one of the most intimidating events that women can

» Dr. Thomas Fabian, a radiologist and principal in Advanced Imaging in Charlotte County, is a Susan G. Komen for the Cure board member. He began practicing in Charlotte County in 1985.

face — the loss of hair, which many cite as the most trying emotional moment in the struggle against disease, second only to being told that they have cancer. Here, Ms. Mott remembers what that was like and recalls her precious friend.

Yellow hair, red hair, brown hair, long hair, short hair, spiky hair, curly hair, straight hair and NO hair. I've had all those and can tell you, the world relates differently to a female — can't speak for males — in each condition. With long blond curly hair and pink lipstick, a post office door will be held for you while you park your car, gather your packages and saunter a half-mile across a parking lot. With NO hair, the same door will drop in your face as you're rushing for the handle, this because you have been rendered invisible.

» Dr. Mary Kay Peterson is a radiologist at Radiology Regional Care Centers in Fort Myers and Naples. A longtime volunteer for Susan G. Komen and the nonprofit physician group Partners for Breast Cancer Care, she began to practice medicine in 1993 and had to learn the difficult art of holding both compassion and empathy in the same care-taking chalice as empirical thinking and medical reasoning.

When my friend Cindy was battling breast cancer and went through chemo and was losing her hair, we shaved our heads together — one of the more traumatic experiences of my life and something I hope to never, ever, do again. I would, of course, but Lord knows, I don't want to.

I thought it would be no big deal but it was a huge big deal — not the act of being shaved, but living with the aftermath for three months. The world treated me like the world had never treated me before. I'm used to people being nice, smiley, warm and pleasant to me and suddenly they weren't and it was AWFUL. I promptly went out and bought two wigs: one, a Sharon Osbourne red job, the other a Shelley Long strawberry blond sleek thing. When I wasn't in wigs, I mostly wore head turbans, which I personally liked, though they didn't get many smiles in (some places).

Cindy had moved to Tennessee, so when her hair started falling out, my sister Fraya went with me to see her and to do the head-shaving bit, which I'd promised her I'd do. We went to Cindy's regular hairdresser, who was a clone of Dolly Parton's character in "Steel Magnolias." Fraya filmed while we were shaved. After Cindy's long blond locks fell, we stared into the mirror and Cindy said: "Look at those big huge ears."

Her hairdresser, real Tennessee sweet-like, said, "No, honey, you don't have big ears. You just have a cute leetle ole mouse head, that's all."

Cindy became "Mouse Head" after that, for a while.

From our head-shaving deal, she survived chemo, radiation, a mastectomy, more chemo and radiation and lived another two years. She was re-diagnosed with a liver-met on my birthday, Oct 11, and died on my daughter's birthday, Nov 18, 2006.

» Wendy Avner, 57, a south Lee County resident and her Chicago-based daughter Lindsay, 27, founder of the highly acclaimed organization Bright Pink, both carry the mutant gene BRCA 1 (Breast Cancer 1).

This gene threatens not just a single woman with an extremely high risk of both breast and ovarian cancer — a mother — but forces daughters to face a 50-50 chance of inheriting the same risk. Those who carry BRCA 1 traditionally have much shorter life expectancies than the norm.

In Ms. Avner's case, the disease ravaged her family and forced her daughter to do a DNA test. At the age of 22, Lindsay discovered that she would have a 90-percent chance of getting breast and ovarian cancer during her lifetime. But courage is not something the Avners lack. Lindsay made the most difficult decision — a decision now being faced by an increasing number of young women who learn through DNA testing that they carry the BRCA 1 or BRCA 2 gene. She became the youngest woman, at 23, ever to have a double mastectomy at Memorial Sloan-Kettering Hospital in New York City.

The Avners turned the disease around and used it as a chance not only to grow closer to the remarkable world of women (and some men) who fight breast cancer, but to make life helping others. Here, Mrs. Avner describes some of that experience in a tale that reveals at least one significant truth: Those who become aggressive and determined from the beginning not to be beaten by this disease, are much more likely to survive.

To see both of them speaking about the experience, or learn more about Bright Pink, go to www.bebrightpink.com.

My mother got breast cancer when she was 36, and died when she was 39. A week before she died, my grandmother died from breast cancer. I've had several other relatives die of breast cancer on both my maternal and paternal side. Most of them got breast cancer and did not live more than three years.

But my mother died in 1971, when I was 18. I had just started college at Tulane. My father's sister got breast cancer and died from it, and she was in her 40s. Then her daughter also got breast cancer at 42. And my mother's sister got ovarian cancer and died from that, when I was in my early 40s.

I went to hear a famous doctor speak about all this one day and he said, "If you have a history, don't bury your head in the sand."

This guy — it was like a lightning bolt hit me. I booked an appointment with him a few weeks later, and he found a lump. It was benign, but I made up my mind — I wouldn't let this disease beat me.

So I went to see him religiously every three to four months. He'd say to me, Wendy, come back in a year, and I'd say, OK. Then I'd book an appointment three months later. I decided if my insurance wasn't going to pay for it, I would.

I did it for 12 years, and when I was 42, I went to my gynecologist one day and found a swelling. I said, 'Don't worry, I'm going in next week.'

That was malignant, and they did a lumpectomy and removed two small tumors, in stage one. I was so proactive. The doctor came in and said, 'You have breast cancer' and then he walked out and left. A nurse came in and said, "Let me get a wheelchair to take you downstairs to go home."

I said, "NO." I left the room and searched the hospital, and it took me a while to find the doctor. I made him sit down and tell me what my options were, for 45 minutes.

Then I got a second opinion, and decided to find the best person in the country — Lindsay was 12 and my son was 3. So I went to Memorial Sloan Kettering in New York, and had a bilateral mastectomy. At the time, I didn't know I had the genetic defect.

My husband and I said to each other, "If this ever happens again, Wendy, you have to be aggressive at the beginning, that's your best chance." He's been with me the whole time. He said, I want you here. I want to have a full life with you.

So I had the bilateral mastectomy and I have not had reconstruction done.

I went through 12 chemo treatments, lost my hair, all of that. And then about 10 months later, I noticed my stomach was getting big. I looked like I was nine months pregnant. The doctor kept saying it was just a side effect, but I woke up one day and my left leg was numb.

When they did an ultrasound, I discovered I had ovarian cancer.

It turns out they have different chemos for different cancers. I was going to be hospitalized overnight on these six treatments, and lose all my hair all over again. But my daughter's bat mitzvah was scheduled three weeks out, so the show went on. I wanted no attention on me I wanted it all on her, so I promised her I wouldn't start chemo until later.

The bat mitzvah was on Saturday, and two days later, I started chemo again.

(In 1997, Mrs. Avner founded the Hope Boutique, a shop associated with the Ohio State University Hospital in Columbus, offering everything any cancer victim might need or want, for people from all walks of life, as she puts it. And her daughter was growing up.)

I didn't have the genetic testing done on myself until Lindsay was about 22.

I thought, "If I find out I've got this gene, what am I going to do with the information?"

When this first happened, they were denying people employment, they were denying people insurance — but after they passed the law protecting us, I decided I would go. My daughter went with me when I got the test and found out. I didn't get so upset, but she was very upset.

She'd seen all this from the time she was a girl, she had to come home and help me around the house, when I had a 3-year-old son and was sick.

After I had the test, one day my daughter saw a little girl riding on her father's shoulders, at a Walk for the Cure event, and the girl had a sign on her back that said, "I race in memory of my mother."

Lindsay broke down. She'd just graduated from college, she was moving to Chicago, and I said, I'm not telling you to be tested.

But she did. She knew she only had a 50-50 chance of carrying BRCA 1, but when she went back to get the results, they told her she had it.

She was hysterical. It was info overload. She got all these physical symptoms, stomach pains, migraines, 24/7… it was a physical nightmare. Here she was trying to start her life, but she had this on her back.

Finally she said, I really think I need to get a prophylactic mastectomy done on both sides.

I said, "I'd like to take you to my doctor in New York, and I want you to talk to him."

She had immediate reconstruction after the surgery. It took her from a 90-percent chance of developing breast cancer in her life down to a 5-percent chance. And it's very natural looking, they save the nipple and that whole thing.

After that, a reporter from the Chicago Tribune interviewed Lindsay. She was on the front page. The Today Show found out, and they flew her and me out there to be on the show — that was about four years ago.

She started having a lot of people ask her for advice, and she noticed a lot of young women out there were scared — they felt they had no one to turn to, no support system — so that's when she started Bright Pink.

The organization started growing and growing. She gave up her job and became the executive director, and now I write grants for her and help her at all the conventions.

I have a tremendous amount of energy.

» Janet Gainey, 62, spent 25 years teaching elementary school in Massachusetts before moving to Bonita Springs five years ago.

A 20-year survivor of metastatic breast cancer, her disease recurred 14 years after its initial discovery, spreading most recently to her lungs and spine. Now part of an 20-month experimental drug program in which she is taking either a placebo or a new and untried medicine (she chooses not to name the drug or provide more details), she is free of tumors, and has cancer cells only in her blood.

Although her disease will ultimately prove fatal, she says, her longevity is not only a testament to her own strong spirit, but to good medicine, good support and hope.

"Keep in touch with people you love, tell them what's happening and never lie," advices Mrs. Gainey, who volunteers at Susan G. Komen and receives her care at Florida Cancer Specialists.

I was 42 years old when I discovered the lump. I'd had a scare five years prior and I saw Dr. Susan Love in Boston. (Dr. Love is a widely acclaimed pioneer and author in the fight against breast cancer.) I was able to get in to see her because I'd had something I'd been tested for earlier, but it was nothing.

And I found the lump myself because she had taught me the very first time how to do that.

Within a week, she had me into the office, I had a lumpectomy, and they removed a two-centimeter tumor. She did a second operation two weeks after that because they found cells outside of (the area) and I had to have a partial mastectomy. In less than a month after that, I had six weeks of radiation. And then two weeks after, I had six months of chemotherapy, all in the Harvard teaching hospital in Boston.

When I came out of that treatment, I had negative numbers in terms of cancer cells in the body. They felt everything was absolutely clean. I had follow ups every month for six months, then I went every three months, then every six months and then every year.

For seven years, I had follow-ups with blood testing and I was always negative.

So I retired and found another doctor. When I retired, I asked that any gifts to me be made as contributions to Susan B. Komen for the Cure, because they had helped me so much (in New England).

As a result of having had radiation originally in the area of my esophagus, I had scar tissue and developed an acid reflex. It got so bad at one point the doctor felt I needed to see a specialist. He gave me a quick CT scan from my neck up, and they saw a black area down near my lung. That was just over five years ago.

Finally I had another CT scan, a full one. And when I went back he said I had seven tumors in the lining of my right lung, opposite of the breast where I'd had cancer.

The doctor felt it was probably the breast cancer. Five of the tumors were malignant, so I went back to Boston to my old radiation oncologist. Dr. Love had believed in saving all of the slides with the original cancer cells, so 14 years after my operations, they were able to match up my cells with cells from the biopsy, and they were identical — it was metastatic breast cancer.

I began a hormone treatment, pills, to prevent estrogen from feeding the tumors.

I did four of those in four years and each one went to a certain point and failed. During that time, the two tumors that weren't malignant became malignant, and another one grew, so I had eight tumors. Then five small ones grew inside the lung, and I had them on my L2 and L5 spinal bones.

That's when they offered me this clinical trial, and it's not finished.

My body is very strong, my will is very strong, and I have a support system that, in my mind, is equal to no others.

At Komen, we've packaged material to be passed out in October in all the churches in Collier, Lee and Charlotte counties: breast cancer facts, how to do a self exam, and other things. The money people give for support, the camaraderie at Komen — it's the most amazing thing I ever participated in. Thousands of people are getting together to help ourselves and other women learn about the disease.

To men, I would say this, and I've talked about it enough with other women that I think we probably all feel the same way: The men have to become part of it, and listen to what we have to say. This is a way for us to share with them how we feel.

In my opinion, the best thing for me — and the best thing, I think, for everybody — is that nowadays, we can talk about it. It's out there, and everybody knows about it.

But 20 years ago, it was still a hushhush thing.

» Dr. Thomas Fabian, a radiologist and principal in Advanced Imaging in Charlotte County, is a Susan G. Komen for the Cure board member. He began practicing in Charlotte County in 1985.

About the care:

The reason for our prescription of yearly mammograms is simply that you're more likely to see a problem if you have a visual — a mammogram — to start with. Some people ask about the risks. There are some; it's still an X-ray. But if someone gets a mammogram at 40, and she has 40 mammograms after that, what does that do? The incidence of inducing cancers is extremely tiny, so the risk is extremely remote.

We end up picking up a lot of cancers in people who haven't had a mammogram before, and we see a very positive trend between early detection and survival.

Now we add high-quality ultrasound and the breast MRI to the variety of ways to look for these cancers. Some cancers are subtle or hard to pick up on a mammogram. We're looking for disease on the order of less than a millimeter — some of the micro-calcifications we look at are down to the 70 micron size. That's why visuals are so important. You can see the problems much sooner when they're not invasive.

Our lead mammographer here — her mother died from breast cancer when she was young. Everybody has a family member or a friend who was touched by this disease.

But things are significantly better now. It makes the practice very rewarding, with visual mammography being the biggest leap forward, followed by ultrasound and breast MRI. There should be very few if any patients who have a cancer you can't see, now.

About the cancer:

Breast cancer comes in multiple sizes and shapes, and in different types. Some cancers occur in milk ducts, others occur in milk glands, and others occur outside and enter the breast from other sites, such as lung cancer, melanoma or lymphoma spreading to the breast. So there are lots of different types.

In each one, when we do biopsies, we consider DCIS, or Ductal Carcinoma In Situ (cancer developed at that site) versus IDC, or Invasive Ductal Cancer. The distinction there is huge in terms of how a patient is treated. If it's invasive, it can spread anywhere.

The genetic predisposition to this has always existed. But when they did the human genome project and they could look at the genetic characteristics of patients with different cancers, they saw that different cancers could exist in the same families.

You can look at the chromosome makeup in each patient — you can say, this gene is specific, the same gene in the same family — then see how the expression of this gene created cancer.

So with BRCA 1 and BRCA 2 (Breast Cancers 1 and 2, two mutant genes that cause the disease), they look at the chemical composition of the gene itself. If you look at the DNA you see those genes are formed differently, (you can see) the molecular biology of these processes. Now you've identified certain defects of genetic characteristics of these lesions that lead to cancer. So then you ask: How do you genetically reengineer the patient to correct that?

I was at the University of Massachusetts at a conference six months ago, and one of the lead doctors doing research there is trying to re-engineer the human gene to take a new gene, and install it into the patient's genetic pool to correct the abnormality.

So you have to do genetic re-engineering (if you want to defeat inherited breast cancer).

» Dr. Mary Kay Peterson is a radiologist at Radiology Regional Care Centers in Fort Myers and Naples. A longtime volunteer for Susan G. Komen and the nonprofit physician group Partners for Breast Cancer

Care, she began to practice medicine in 1993 and had to learn the difficult art of holding both compassion and empathy in the same care-taking chalice as empirical thinking and medical reasoning.

The five-year survival rate for earlycaught breast cancer is 98 percent. I'm talking about something managed with a lumpectomy that may not even need chemo or radiation — smaller than a shelled peanut.

What I want to say to women is that there are certain things we can do that will make a long-term impact in our life, and screening mammography is one of them. It's your insurance for an early-caught breast cancer. Not all breast cancers are caught by mammograms or ultrasounds or even MRIs, but for the vast majority, a mammogram is a step in right direction.

The gold standard is to do it every year starting at age 40, or to start 10 years sooner than a first-degree relative might have been diagnosed premenopausally.

You also have the screening breast ultrasound, which is subjective by the operator and focuses in on abnormalities felt or seen by mammograms. The MRI, on the other hand, gives you a better overall picture of the breast.

The others will be appreciated (discovered) by the other two parts of recommended care: a monthly health exam by the woman, and an annual exam by a physician.

There are some cancers, a small percentage, that are appreciated by physical inspection alone — these are lobular carcinomas — and they're picked up by the patients themselves, or significant others, or doctors. They grow in sheets, so it's hard to pick them up.

If a woman notices she has dimpling or nipple retraction or rigid tissue in her breasts, those could be signs.

For a screening mammogram — your baseline, with no problems — a patient doesn't even need a doctor's prescription. She can make that appointment herself, come to the practice and get her screening mammogram. But she needs to have that physical exam by her physician.

This will take minutes with the digital imaging. The computerized images come up directly in the room with the patient, and the technologist can do her own quality control and make sure images are appropriate for the radiologist to review.

Before, images were on film, but we're changing to (all digital) beginning now.

The best time to schedule a mammogram is after your period — the breasts are less tender and glandular tissue is less stimulated. The hormones will be at their lowest level in the cycle, and chances of this being uncomfortable are at the lowest.

But here's what you get: A couple minutes of exam, total, and only seconds of compression, and this can really save a life.

And I don't know of any insurances that do not cover an annual mammogram. If a woman has no insurance and does not have money to cover it, there are multiple organizations in both Lee and Collier and in Charlotte that will help.

Typically, premenopausal breast cancers are more aggressive, so we need to catch them early. Here, we read more than 60,000 mammograms a year, and it is much more unusual to see on somebody's breast history sheet that comes with every mammogram that a woman does not have a family history of breast cancer.

And finally I want to say this: I am absolutely optimistic enough to think that we can meet what Susan G. Komen and others organizations say is the goal, and eradicate breast cancer completely.

Maybe not in Mary Kay Peterson's life. But before my 10-year-old gets there? You betcha.