Why I Chose Not to Have a Double Mastectomy


Ok, I’ll admit that the title of this article is slightly misleading. But only slightly. I now have a double mastectomy but it took 22 years from first diagnosis and 4 bouts of breast cancer to get there. I never did choose a double mastectomy. It just kind of happened when I had exhausted all other treatment options.

When people hear that I am a 4 time survivor, they shake their heads and wonder why I didn’t have a double mastectomy when I was first diagnosed with cancer. The reasons for the decisions I made were partly historical, partly personal choice, and partly based on the medical advice I received at the time.

Historical and Medical Reasons

My first diagnosis of breast cancer was in 1988. This was at a time where women’s health advocates had been fighting for years to provide women with breast conserving options after many decades of the standard treatment being the Halstead radical mastectomy. This operation bears little resemblance to today’s mastectomies as all the chest muscles and structure were removed along with the breast, leaving a large hollow on that side of the chest. By all accounts, this was a horribly disfiguring surgery that almost guaranteed the patient life long problems with the arm on the side where the breast had been removed. The 1980’s brought in a new surgery – the lumpectomy – which removed the tumour and a wide area around it which allowed women to keep part or most of their breast, depending on the size of the tumour and the size of the breast. The removal of a big tumour in a small breast would be much more disfiguring than the removal of a small tumour in a big breast. Lumpectomy combined with 6 weeks of radiation treatment was found to have comparable results for mortality and reoccurrence as a full mastectomy (removal of breast with chest muscles left intact). These same statistics hold true today, except for women like me who have a genetically based cancer. The prevailing mood of the times was that the lumpectomy and radiation regime was a huge step forward for women taking back control of their bodies from the male dominated medical profession.

The knowledge base in the 1980’s was much more limited than it is today. Today we recognize at least 5 major types of cancer: lobular, inflammatory, hormone positive, herceptin positive, and triple negative, the type that I have. In 1988, herceptin had not been discovered and without knowledge of its existence, there was no category for triple negative cancer as the triple means the cancer is not fueled by the hormones estrogen and progesterone nor by herceptin. It is now often said that triple negative cancer is the most aggressive cancer but in 1988, all that could be said was that my cancer was not caused by hormones. We now know that the prescence of triple negative cancer in a young person often leads to the conclusion that the cancer is hereditary in nature. I was diagnosed at 29. The average age for breast cancer patients is 55-60.                
             
There was no genetic testing for breast cancer as there is today. There was the knowledge that having a family history of the disease was a risk factor but there was as yet no proof that some cancers were due to a genetic mutation in the BRCA1 or BRCA2 genes. A family history was just one of many risk factors that could make a person more likely to get breast cancer, no more or less significant than failing to have a pregnancy before 20, failing to have breast fed a baby, or having an early start to menstruation. I had all of these factors working against me so while the doctors noted my young age as being unusual for this disease, the combination of all my risk factors provided some explanation. My young age in itself did not set off any warning bells as it would today.

I was given the option of either a single mastectomy or a lumpectomy with radiation. No one would have even considered suggesting a double mastectomy as the other breast was seemingly healthy. Why cut off a perfectly healthy body part in a 29 year old woman? It was pretty much assumed by the doctors that I would go the lumpectomy route as I was a young unmarried woman with no significant other and no children. I did agree to meet with a plastic surgeon to see how they could reconstruct my breast if I chose a single mastectomy. Let’s just say reconstruction surgery has progressed tremendously in the last 25 years. Looking through the book of photos that the plastic surgeon proudly showed me,  I was appalled and horrified at the results. Thanks but no thanks! I”ll have the lumpectomy if you don’t mind. Doctors, family, and friends all assured me I’d made the right decision.

I stayed healthy and was cancer free until I went in for my 5 year check-up. I always thought that if you made it to 5 years, your cancer was cured. Unfortunately, another lump was found in the same breast. Lumpectomy was no longer an option as you can only have radiation treatment on the same breast once. My only option this time was a mastectomy and 9 months of chemotherapy. I was 34 when I had a mastectomy on my left breast. The pathology report again said I had hormone negative cancer but it was much more aggressive than the first tumour had been. The pathogists concluded that this wasn’t a recurrence of the first cancer but was a brand new primary cancer. I was told that even if I’d had a mastectomy at 29, I still would have gotten cancer again 5 years later. Again, no one suggested a double mastectomy as triple negative cancer still hadn’t been discovered and genetic testing wasn’t available.

Two years later at 36, a mammogram of my right breast showed a tiny cancer that was too small to be felt. Having breast cancer 3 times in 7 years at my age was highly unusual but my family doctor was the only one to push me towards a second mastectomy. Genetic testing was now just becoming available so I agreed to having a lumpectomy immediately and would have a second operation for a mastectomy if I was found to have a genetic cancer. The type of genetic testing that was available at the time only looked for the wrong “lettering” in the parts of the BRCA 1 and 2 genes that had been decoded to date. In other words, if the code was supposed to be ” “abcd” and your code read “abcf”, the test would catch it and would compare your code with others with the same lettering to see if it had been linked with breast cancer. They did find one wrong letter in my coding but it was of “unknown significance” (and still is 18 years later) as there weren’t enough people with this particular variation to determine if it was associated with breast cancer or not. I was basically told that unless I heard otherwise, to assume I did not have a hereditary cancer. The doctors called it a new primary cancer as it was in the other breast but assured me that as it was caught so early, the likelihood of recurrence or metastisis was miniscule.   (We now know that early detection doesn’t always work that way and many people do have recurrences and metastasis even when caught at such an early stage). So the breast stayed after a lumpectomy and another 6 week stint of radiation.

I was cancer free for the next 16 years, only going for yearly mammograms. I felt pretty damn safe after all that time. Cancer was a thing of the past, something I had seemingly outgrown. But in 2011, the mammogram
picked up some calcifications in my right breast that were highly suspicious for cancer. I had my second mastectomy in 2011 followed by a different type of chemotherapy than I had when I was 34. It was at this time that I learned I was having my fourth battle with triple negative cancer. The pathologists had retested the old tumours to come up with this finding. They saw that each cancer was progressively more aggressive than the one before. The pathologists are divided as to whether this was my fourth new primary cancer or if this was a recurrence with the previous cancer cells hiding and evolving in my body for 16 years. I was urged to be genetically retested as the tests could now also look for things other than rearrangement of the coding letters. The retest showed that I was missing a large portion of genetic material at the end of my BRCA1 gene. The genetic counsellor described it as being like a book with the last 4 chapters ripped out. It took 22 years to learn I had genetic triple negative breast cancer. The deletion in my BRCA1 gene also put me at a high risk of getting ovarian cancer so after chemotherapy was over, I had my ovaries and tubes removed as a preventive measure. Just as having a mastectomy does not guarantee you won’t get breast cancer again either in the scar tissue or metastisized to some other organ, ovary removal does not mean you can’t get cancer where your ovaries used to be. But I’m keeping my fingers crossed that 4 bouts of cancer are enough for one person!

Personal Reasons

My first three cancers occurred in my 20’s and 30’s. While there were support groups available, I never met anyone who was even remotely close to me in age. I thought I was the only one my age going through this. I was single, trying to re-enter the dating market, and couldn’t imagine doing so without a breast. (After all, who wants to date the only 29 year old woman in the world without a breast?) The reconstruction pictures I saw at 29 were frightening and the actual reconstruction I got at 34 was even worse. I was not anxious to do the whole thing over again at 36 when it was such a tiny cancer that had been caught early. And by 36, I had done my due diligence, gone for genetic testing, and had been cleared for hereditary cancer. Coupled with that, my mother had a lumpectomy without radiation in 1980 and her breast cancer never came back. By the time of my first cancer diagnosis, she had not only survived breast cancer, but she had also battled ovarian cancer 3 years earlier. By the time of my second cancer, she was dead from her second bout of colon cancer but her breast cancer never came back.

Call me vain and shallow for wanting to keep my breasts as long as I could. That’s okay. It was a different world then. Breast cancer was still stigmatized, I was insecure, I was scared, and I had no idea my genetic make-up predisposed me to having cancer after cancer. My present oncologist believes I still would have had multiple breast cancers even if I had double mastectomies back in 1988 as like my mother, I get new primaries not recurrences.

I try to imagine what I would have done had medical science been more advanced, had complete genetic testing been available, and had I been living in a world of online support groups for young women. A world like today where breast cancer is fully mainstream and there is a whole month of the year dedicated to raising awareness of the disease. Would I have done things differently? Maybe, but I don’t know for sure. Even if all my choices were wrong, breast cancer is such a crap shoot that I find myself still alive and kicking 25 years later while so many others who did everything right are dead. Breast cancer isn’t just or fair. I carry my fair share of survivor’s guilt but that is a topic for a whole other post.

Sharon Greene November 5, 2014

Posted from WordPress for Android

Advertisements

14 thoughts on “Why I Chose Not to Have a Double Mastectomy

    1. Sometimes in the support groups, I get the question that if I just had a double mastectomy the first time around, wouldn’t I have avoided the last 3 questions? Maybe I would have and maybe I wouldn’t have. I just don’t know. My mother kept getting new primaries in different body parts over a 12 year period. I kept getting new primary cancers just in my breast. Hindsight is 20/20 and if I had known of my BRCA1 mutation way back when, I might have done things differently. Or maybe not. I wasn’t psychologically ready for a double mastectomy back when I was 29. Reconstruction has improved so much since then that had I been shown the kinds of pictures I now routinely see posted in groups, it might have been something I considered by cancer 2. But as you say, I made the best decisions I could based on my dr’s advice at the time as well as my personal preferences for feeling the necessity for preserving my breasts at the time. Things may have turned out differently with a double mastectomy early on or I may still have gotten new primaries at the mastectomy site. I’ll never know. But I do feel judged by some people for not doing an immediate double mastectomy at the first or second instance. All I can really say is that the times were different and I was different than I am today. I look forward to reading your article Beth! Thanks for digging through the archives to read and comment on this article !

      Like

  1. Astounding is an understatement! I love the attitude of defiance and triumph that you exhibit! Keep the fire 🔥 burning, by inspiring those afflicted by cancer, and blaze the trail to bring hope of a life even after the struggle and pain! Keep on going dear!

    Like

  2. Marcy, thanks for the link to your site. I checked out your link, subscribed to receive your posts, and left you a comment about your “hotness”. I said “hotness isn’t a body part, but a state of mind (coming from the survivor with 2 fake boobs and no ovaries).

    Like

    1. No more mammograms. For some strange reason, they started to do mammograms on my reconstructed breast for a few years about 10 years after its removal. Then when the second breast was removed, they said I didn’t need mammograms any longer. Go figure.

      ,

      Like

  3. I had thyroid cancer in 1981 at age 19… support groups were for old people. I never went to one. I had a book that said ‘mammograms were just beginning to be considered as a screening tool for breast cancer’. Breast cancer showed up in 2007 and I was petrified I would need a mastectomy. But I didn’t. But I did grow a (benign) tumor during chemo so I began and ended chemo with lumpectomies.

    I can see progress in cancer treatment from 1981 to 2007 to today. But we need more. Love your blog.

    Like

    1. Sorry to hear you are a member of the Cancer Club. Support groups in the 80’s and early 90’s just didn’t exist for young people. I thought I was the only one with an old lady’s disease. Thank God for the internet!

      Like

  4. This was EXCELLENT!!!! I learned some new things, like new primary cancer versus recurrence. It was also very informative for the people who think removing the breast, ovaries, and womb will fix everything. Is triple negative always associated with the BRCA gene? I read a book a couple of years ago called “Emperor of All Maladies: A Biography of Cancer,” and what you discover is that progress on cancer research and treatment has been glacial. My protocol for treatment has been around since the 80’s. Well, being a four-year survival and able to tell the story puts you in rarefied air and I believe you are MEANT to be here for years to come! Thanks for sharing.

    Like

    1. Triple negative cancer is not always associated with a BRCA gene defect but most women who have a BRCA mutation get triple negative cancer. Maybe the others who get triple negative cancer are influenced by some other gene that causes breast cancer but hasn’t been identified yet.

      Thanks for the kind words on my post!

      Like

  5. “Call me vain and shallow for wanting to keep my breasts as long as I could. That’s okay. It was a different world then.” To keep or not to keep is still such a personal decision despite medical advancements. Plus, I honestly believe our age at time of diagnosis is a huge consideration. I am certain that had my diagnosis came when I was as young as you, I would have probably chosen the same route. My only difference is that breast cancer runs heavily in my family – both maternal and paternal, including my mother. Yet, none of us who had breast cancer, even in today’s technology are genetically positive. My Oncologist said that science still has a long way to go, they have not yet discovered the marker/s which are prevalent in my family.
    Thank you for sharing your story and the in-depth information.

    Liked by 1 person

    1. I believe medical science is constantly evolving and that there may well be genetic problems that have yet to be discovered. The best medical testing in 1996 said I was BRCA1 negative but 16 years later, new testing methods showed I was clearly BRCA1 positive.

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s