Treat Me, Not (Just) My Cancer

breast cancer awareness month

The final guest post for Breast Cancer Awareness Month is written by Eliza, who became a friend after I read about her in the newspaper and made contact (in a non-stalkerish kind of way!). Eliza is a biomedical research scientist who put her skills as a researcher into action in a very personal way when she was diagnosed with breast cancer at 28 years of age. This is her story.

I remember the day that my life changed forever, but not the exact date….it was a Friday afternoon in July 2002. I was home with my two-year old darling son (DS), recovering from the breast lumpectomy that I had three days prior. My darling husband (DH) came home for lunch and asked me if I’d heard from the surgeon regarding the pathology of ‘the lump’. I replied that if it were anything nasty, I would have heard and I hadn’t. He insisted that I contact the surgeon’s rooms while he was home. I did. Life changing phone call……

I’m really sorry but you have breast cancer, quite aggressive and advanced…..you require immediate surgery….removal of the entire breast and underlying muscle, all of the lymph nodes under your armpit and above the breast, you should seriously consider having your ovaries removed at the same time because your cancer is highly responsive to hormones….. you will need chemotherapy and radiation……., bone scans, CT scans……it is most likely to have spread…..’

NO THIS CAN’T BE HAPPENING…..we are planning another baby….I’m too young…

I had initially found a lump in my right breast in January 2002. I monitored the size of the lump for a little over a month to ensure that it wasn’t simply a hormonally responsive cyst or other innocuous tissue. I went to the GP, we monitored for another month, then I had an ultrasound. Nothing to worry about  – five benign (not cancer) masses that presented as fibroadenoma and a cyst ….largest ~2cm. I had no family history of breast cancer, I was 28, I’d breast fed my son for 12 months…..my only ‘risk factor’ was that I was female. Recommendation was to continue to monitor and return if anything changed.

Well, I was too busy to get a second opinion and didn’t care for a different opinion anyway – benign lumps suited me just fine. It was only at the insistence of my DH and prompting by my dear friend (and offer to mind our DS) that I had another ultrasound in June. This time the finding was ten masses, the largest ~5cm and a blood supply evident in several of the masses. Angiogenesis (the formation of blood vessels) is a hallmark of cancer. This worried me, however the breast surgeon did not seem concerned. We pretty much insisted on the lumpectomy ‘just to be sure’. The surgeon’s expert opinion was that he was 99.9% sure that it was not cancer so the lumpectomy surgery was booked for a few weeks later.

Fast forward to the Tuesday after that phone call. The breast surgeon was so sure that it was not cancer that he was going on holidays for six weeks on the Saturday so we had to see another surgeon on Monday who booked the surgery for 7am the next day. This was the first of more than ten separate surgeries over the next 18 months….

So back to the title of my story – treat me, not (just) my cancer. Breast cancer incidence is highest in women over 50 so all of the survival statistics and long-term side effects related to treatments have been largely determined using this age group. Most chemotherapy regimens and of course removal of the ovaries will lead to early menopause. Although this is an awful side effect for a woman in her 40s or 50s, it can be devastating for a younger woman and her partner who want to have children in the future.

Thankfully the landscape around fertility concerns of younger women with cancer has changed quite a bit since I was diagnosed and actually some of it has been led by one of my medical oncologists. For me, it was a struggle to get my medical team to understand my perspective. Of course I wanted to survive and I would do everything that I could to increase my chances of survival however I also wanted to explore other treatments that would eradicate the cancer AND preserve my fertility AND not impact too much on my long-term quality of life. DH convinced me to research other treatments and ensure that I was comfortable with our path forward.

Thankfully I found a very caring medical oncologist who was part of an international clinical trial that was comparing the gold standard chemo drugs for BC (infertility-causing) with a new combination of chemotherapy drugs (Carboplatin, Taxotere and Herceptin) that was less likely to cause infertility in someone my age. I enrolled in the trial. I said no to the ovary surgery. Six cycles of C and T, six months of weekly H followed by six months of H every three weeks. After 12 months of chemo, several more surgeries (including a mastectomy of my left breast), my scans were clear however the next step was radiation therapy – five days a week for five weeks.  My mastectomy surgery had left me with a thin layer of tissue covering my ribs and my research of the medical literature led me to conclude that the risks of radiation to my chest wall outweighed any benefit, that is, preventing a local recurrence of breast cancer (it was highly unlikely that I had any breast tissue remaining).

I said no to radiation therapy.

Unfortunately my medical team were not used to patients saying ‘no’ so numerous oncologists tried to convince me (and my family) to have the treatment. With the support of DH, I stuck to my decision.

The next recommended treatment was five years of Tamoxifen hormonal therapy but whilst taking this drug I would have to defer my dream of becoming pregnant. There was very little data on the safety, long-term side effects and survivorship outcomes of someone in my age group taking Tamoxifen.

So I said no to Tamoxifen……again arguments with the medical team but with the support of DH, I stuck to my decision.

Fast forward two years and my dream came true. I fell pregnant and our beautiful daughter came into the world.

I have been deemed cancer-free for 11 years now. At times it has been really scary to take the path less-followed however I feel that I am solely responsible for my decisions regarding my treatment. For me, I needed to consider the whole of me not just the fight against the cancer. I wanted to ensure that I could enjoy long-term quality of life and always, always believe that ‘long-term’ was in my future.

Eliza and her gorgeous daughter today.

Eliza and her gorgeous daughter today.

5 comments

  1. Thanks for sharing this Eliza, this reminds me of a friend who had to go to 3 doctors until someone took her concerns seriously, even with the best intentions Doctors need to listen to their patients. Great to hear that you are still here living life to the fullest with your darling family DF.

    Liked by 1 person

  2. Thanks Alyson. Is your friend ok now? There are so many stories like hers and mine. I understand that statistics and risk factors are useful however we are all individuals and should be treated as such. One of my research interests is now in personalised preventative medicine – understanding the links between genetic and modifiable lifestyle factors and cancer risk. Hopefully one day I can contribute to improving outcomes for people newly diagnosed with cancer and provide tools to prevent cancer onset in those ‘at risk’. I am very fortunate – my DH, DS and DD make life worth living 🙂

    Liked by 1 person

  3. You may not consider yourself brave, but taking control of ones medical care after a shock diagnosis is exactly that. I believe that we are making great advances in medical treatments but still have a long way to go to tick all the right boxes for looking after “the whole person” and this extends beyond illness into such areas as pregnancy and birth. Having ultimate control of your own body is empowering and I think you are amazing along with a great support team with a positive outcome for the whole family. Thanks for sharing your story.

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  4. I too refused radiation treatment much to the shock and dismay of my 2 teams of doctors. You are the only other person I have ever heard who also refused when doing all of the other treatments. I had 22 positive lymph nodes and one above the collarbone which we used to gauge treatment effectiveness (taxol killed it in 2 doses – nothing else had touched it), multiple tumors etc. I read all the studies and felt that in my situation there was no benefit. I am 11 years post diagnosis – reoccurrence free and with an excellent quality of life and NO lymphedema in spite of the double M and extensive node removal. Even my Doctors tell me I made the right decision although they shake their heads and tell me to keep quiet! I always tell others to make the decisions that will allow YOU to sleep at night. Congratulations on keeping control of your treatment. PS – I didn’t do reconstruction either in the end. I didn’t want to lose another minute to pain and recovery -I had it scheduled and kept waking up with panic attacks so decided that my brain was telling my body NO. I just go natural and no one ever notices…

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  5. I too took control of my situation by stating what I wanted to do, and not just submitting to what the Dr’s and Surgeon wanted. In fact I fired the first surgeon and ended up with the head of the surgical department. Together we made an action plan that has worked out well for me. I would probably be dead or horribly disfigured if I had stayed with the first surgeon assigned to me.

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