My Breast Cancer Story - Part III

(. . . You can find Part II here)

Over 182,000 women were diagnosed with Breast Cancer in 2008 and
over 182,000 stories could be told. This is just one of those stories.

I sat in silence as Dr. Kampe talked to me about chemotherapy because I was in complete shock. I was barely processing what I heard. "Wait a minute" I thought, "How can this be??  My mind started racing ... the tumor was only 3/4 of an inch ... no cancer in any lymph nodes." I pointed out where the pathology report said the results were a positive outcome and told him the breast surgeon said I would not need chemo.

"Oh dear, I've never seen THIS before, they really got this one wrong", he said as kindly as he could. "HER2+ is a very agressive type of breast cancer."

The plan was to double check the pathology report (maybe I was really HER2-) and send a tissue sample for the Oncotype DX Test. I tried to absorb it all, but this was like an out of body experience. Dr. Kampe recalculated my 'statistics'. When I arrived at his office that morning, I thought my chance of recurrence had been 2%, now it was 33% - IF I did nothing further. Chemotherapy and Herceptin would cut that in half to 17% and hormone therapy would lower it even further to 9%, or in other words - 91% odds of a 5 year survival. The choice was clear.

I know 91% is a great number, I know there are thousands of women lined up to trade with me. All I could hear in my head were the first numbers I was given by the radiologist before my biopsy (90% of the time calcifications like mine were "nothing"). That didn't turn out so good, I was in the 10% category then, why wouldn't it happen again? This time the Pollyanna in me was nowhere to be found.

It was hard telling my family (they were all home for Christmas). There were tears and lots of hugs. I had a 2 day personal pity party as I thought about the events ahead of me:

• "I'm going to be bald for my nephew's wedding" 
• "I'm going to be bald for my High School Reunion"
• "I'm going to be hugging the toilet"
  

then the real thing to be worried about ... 

•  "I'm going to have poisons put in my body"

Instead of things coming to an end as planned, I was heading deeper into Cancerworld: cat scans, bone scans, MUGA scans, a port-a-catheter and Chemo Class 101. There was also more reading to do. You see when I checked out all the books from the Breast Cancer Resource Center in the fall, I skipped over the chapters on Invasive Tumors, Chemo Side Effects, HER2+ (Human Epidermal growth factor Receptor) and my treatment drugs of choice TCH - Taxotere, Carboplatin & Herceptin.

When it came to researching HER2+, I learned to be careful and look at the date of what I read. Anything earlier than 2006 said the same thing:

". . . more aggressive disease, greater likelihood of recurrence, poorer patient prognosis, and decreased survival compared to women with HER2-negative breast cancer"

Scary stuff, but more recent literature revealed that Herceptin had turned that diagnosis upside down. The best thing I read was a book written by Robert Bazell, HER-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer. According to a review of the book by the Journal of the National Cancer of Institute:

"Bazell makes it clear from the beginning that Herceptin's story includes the realities of breast cancer patients and the activists who support them, without whom this drug would have landed in the proverbial dust bin of history. His unvarnished account of Herceptin's development discloses the issues every American should understand as they try to grapple with the question of what is taking so long."

So here I was, reading about a drug that could save my life, and I learned it's development was a series of dumb luck coincidences - like finding a needle in 1000 haystacks. Then, Herceptin almost didn't make it through clinical trials. It's development had stalled until 1989, when the mother of a senior Genentech VP was diagnosed with breast cancer. Miraculously, the go ahead was given and it still took until 1992 for the first clinical trial to begin. 

Words can't describe how I felt. My wonder drug 

might have been delayed, or never even produced at all.

I highly recommend reading this. Here's more from an Amazon book review:

"...throughout there are the stories of the heroic women with advanced breast cancer who volunteered for the trials, risking what time they had left on an unproven treatment. Two years after she underwent a mastectomy and chemotherapy, Barbara Bradfield's aggressive breast cancer had recurred and spread to her lungs. The outlook was grim. Then she took part in Genentech's clinical trials for a new drug."

Okay, I'm a crier. I cried when I read the book, I cry every time I watch Living Proof - the movie they made about the book, I'm crying now as I write this. I'm happy to tell you that Barbara Bradfield is still alive today, and disease free. No one else in that initial trial survived, that's how sick they were. But it is thought because her cancer had such high HER2 levels, the Herceptin responded. Remember that Oncotype DX test I mentioned earlier? My results came back and the HER2 levels were off the charts. My oncologist believes that indicates my cancer will respond to Herceptin just like it did for Barbara.

I have played the "what-if" game about when my cancer was found - partly due to my negligience in getting a mammogram. (see Part I). When I learned about the timeline of the FDA approval for Herceptin, I was blown away:

• 1992 - Phase I clinical trials began
• 1998 - FDA approval of Herceptin for metastatic, HER2+ breast cancer
• December 2000 - Enrollment of two Phase III clinical trials for the adjuvant treatment of early-stage HER2+, lymph node positive
• November 2006 - FDA approval of Herceptin for early-stage HER2+, node positive breast cancer
• January 2008 -  FDA approval of Herceptin for early-stage HER2+,  node negative breast cancer (MINE!), in conjunction with harsh chemotherapy drug Adriamycin associated with cardiotoxicity (also known as the red devil)
• May 2008 - FDA approval of Herceptin for early-stage HER2+, node positive and node negative breast cancer in conjunction with a less cadiotoxic chemotherapy regimen of TCH .................. MY CANCER TREATMENT
• By October 2008, the 10 year anniversary of the first FDA approval, more than 420,000 women with HER2+ breast cancer have been treated with Herceptin worldwide. 
  

It took almost 30 years from the time Robert Weinberg first identified
 the HER2 gene in 1979 to the time Herceptin was approved by the FDA
for my specific cancer - barely one year before I would need it.

What if I had my mammogram 3 years earlier (when I was supposed to), and they had found my cancer then, I would not have been given Herceptin, and I believe my cancer would have metastasized without it.

I met Sheila on the Her2 Forum. Her cancer story stood out because we were about the same age when diagnosed - and our tumors were similar in type - but hers was smaller and found in 2002. Her treatment was surgery only; her cancer was caught early, she was lucky. Less than 18 months later, it had metastisized. For the last 8 years she has gone through at least 7 different treatments. When one becomes ineffective, she begins a new one. She is one of the bravest woman I know ... this could have been me ... what-if. (UPDATE: I'm sad to say that my friend Sheila passed away in December 2012. I miss her deeply. You can find more of her story here.)

What if I had procrastinated for another year, or 2, or 3? Would I be here today? Perhaps, but I think I'd be facing a different prognosis. PLEASE, please, get your mammograms annually and do self-exams in between. 1 in 8 women will get this dreaded disease in their lifetime. The odds of survival are great if it is found early. BREAST CANCER IS NOT A DEATH SENTENCE ANY MORE, BUT LEFT UNTREATED IT IS ALWAYS FATAL.

Herceptin is my wonder drug. If it weren't for the scientists who worked so hard to persevere, and if it weren't for the brave women who went through clinical trials I believe I would have metastatic disease right now and would be facing a completely different outcome. I like to think that cancer has changed me for the better. First though, I had to get through chemotherapy...

"Be kinder than necessary, for everyone you meet

is fighting some kind of battle."
...Sheila's favorite quote - and now mine. 

As a way to pay it forward for those who have breast cancer right now but don't know it, please help me raise much needed funds for cancer services. You can visit my donation page here:

http://fundraisers.mammajammaride.org/alicemueller2016

...Part IV continued here "My Chemo Cocktail"