I don’t like pink. And I sure don’t like breast cancer.
For me, breast cancer is a lot more important than one month a year where I buy a plethora of pink-coloured products to feel like I’m helping in some little way. For me, breast cancer is real.
I was in my very early 20s when my birth mom, who I knew, was diagnosed with bilateral, aggressive breast cancer. (Bilateral means that it was in both breasts). She was 42 years old. Unfortunately, I lived in a happy bubble of my life and didn’t really do much about it, understand the importance of what she was going through, stand up beside her for her fight. I was a self-centred young adult and didn’t really think about it. She went through surgery – a double mastectomy that also involved removing lymph nodes through her arm pit, etc. She went through treatment – leaving her without hair. She was brave. She still smiled. She was beautiful. She walked down the aisle at my wedding together with my mom and sat there proudly with her short, buzz-cut hair. The cancer went into remission for a few years, but then came back with a vengeance and attacked her liver. She passed away in 2008. I’d seen her 2 weeks before. I regret not having been there for her more.
While she went through her breast cancer experience, my birth mom was constantly thinking of me and my sisters and how her cancer was going to affect our futures. She participated in a DNA test to see if she carried a gene mutation that indicates a high-risk of heredity. Her tests came back inconclusive/negative. It seemed strange, given the amount of breast cancer in the extended family, her case of bilateral cancer (which is a strong indicator of heredity), and that very young ages of diagnoses. But, at the time, that was all that could be done. I put it to the back of my mind.
My aunt had breast cancer too. She, too, had surgery – a lumpectomy, I believe. She also had treatment which left her exhausted and sick. Again, I kind of hid my head in the sand. I guess there’s a sense of safety if you pretend it isn’t happening. But it sure isn’t supportive at all. Today, she’s a brilliant, strong survivor.
These are two of my heroes. They deserve every moment of recognition and respect I can give them. They are strong women, brave in the face of the direst adversity. I wish I’d given more to both of them.
Fast forward to September 2009. I was getting ready to go out to work, and I found blood in my bra. I stood there in the bathroom looking at the blood spots and my heart stopped beating. Somehow, I managed to pull myself together, finish my work for the evening, and make it home before I had my wild imagination go to the extreme. Spontaneous bleeding is a sign of breast cancer.
I struggled with what this would mean. What if I had cancer – what about my boys, my husband, my life? I was only in my early 30s. It wasn’t fair.
I bled for 6 weeks. I went to my doctor, who sent me to a specialist to see what steps we needed to take. Everyone felt this was serious and repeatedly warned me that it could be cancer related. It went for ultrasounds, mammograms, and eventually an MRI.
Waiting for results is possibly the single worst period of time ever. Your mind goes wild. You start to imagine scenarios, to think of 1001 things related to what could be happening. You envision yourself bald after chemo, imagine how you can make yourself memorable to your family, what legacy you can leave for your kids if you die. You start to wonder if anyone would care. You start thinking of what will happen to family and friends when you die. No matter how hard you try to stay positive while you wait – it eats at your soul and consumes your every thought.
Finally, the results were in. There was no reason for the bleeding. And it went away. The best guess was that it was something residual from breastfeeding (which I’d stopped almost a year earlier). It has never sat right with me, but what could I do?
The only problem with all those tests? It lead to more.
They found a spot in my MRI that they didn’t like. In the OTHER breast.
And I was sent off to Sunnybrook in January 2010 for more tests. Rinse, Repeat. Back through ultrasounds, mammograms, and MRI machine. Finally, they decided to do a biopsy. I tried to hold myself together. The biopsy had to be done in an MRI machine, lying on my stomach perfectly still while they stuck a needle into me and sucked out the concerning area. It’s nearly impossible to stay laying that still for so long, on your belly, unable to see anything and metal pushing against your centre chest bones. But I did it.
The results came back fine.
But, my journey wasn’t over.
During all the stress of this, I was sent to the head of the Dept of Genetics in the Oncology Department where we discussed genetics and family history. There was a lot of concern surrounding my biological family history of breast cancer and a lot of big flags that had everyone somewhat worried.
They told me that my birth mom had left some extra DNA and they could retest. When the test had been taken before, the chances of success in the test was about a 95%. Now, 10 years later, it was a 98% chance. Only 3% better after all those advances in medicine.
It would take a year, because the test is so hard to do. Apparently, the best way to describe a gene mutation test is like this. Think of someone working on proofreading a set of encyclopedia. They have to see if there’s a spelling mistake somewhere in the whole series, or if there’s any pages missing. Then they have to document the page number and the line that the mistake is in. That’s what they have to do with a DNA strand. See if there’s a single thing out of place, or incorrect in the sequence. I talked to my sisters and we decided to go for it.
In the mean time, I hid from the hospitals who were calling for follow-up tests and exams. I didn’t want to deal with it anymore. I just wanted it to go away.
In 2011, one of my sisters and I made the trip to the hospital that did the DNA testing to hear the results together. We weren’t really going to be surprised at the answer. Yes – she had a genetic mutation. She was BRCA2 positive. My sisters and I had a 50/50 chance of having inherited the mutation. My one sister tested right away. She got negative. I couldn’t do it. I didn’t want a positive test to leave breast cancer looming over my life every day. I could see it filling every thought and panicking me. So, I passed for a while as I thought about it.
Finally, the genetic doctor told me I had to do my follow up scan test. So, I went. I didn’t want to. I just hoped it would give me an all-clear and I would be fine to move on with my life.
Back through the tests – ultrasounds and mammograms and MRI machines. And once again, areas of concern. By now, I’m an old hat at this. Fine. Bring it on. More biopsies. 3 this time. The doctor was fantastic, and actually explained what was going on. Did you know that they do like a little drill motion with a needle and they bore into your breast to the area they need to check? Then they vacuum out the offending tissue and send it off to test. He told me he was only going to do 2 of the areas because he wasn’t really concerned with the 3rd.
Results: negative. Again.
My breast surgeon said that here’s the deal. Given the fact I’m young (young means that my breasts are more dense) and the way that my breasts are, every time I go for a follow up, they will find something they are concerned with. And I will be put back in the MRI for more biopsies. It will be a vicious and unending cycle.
That doesn’t sit well for me, or my family. How much tissue can a person reasonably lose before they realize it’s not worth it? How much more am I willing to expose myself to radiation caused by mammograms – again increasing my chances of cancer all together?
She told me that since my birth mom’s DNA test came back positive, that I should get tested too. That if is was negative, it would stop the cycle. They wouldn’t be as worried about needing to diligently watch me as a high-risk patient, that it would ease the intensity of the testing and checking, and would give me a sense of relief. I felt extremely pressured. Everyone says “Knowledge is power” but really – how does knowing you have a gene mutation that significantly increases your likelihood of getting breast cancer going to give you power? I felt like the right way to say it was “Knowledge is a death sentence.” Finally, I went and got the bloodwork done. I still stressed about it. I even considered just asking to have the test results sealed in my file for future generations. I debated cancelling. I started to think of what steps I would be willing to participate in if the results were positive.
If the results are positive, there’s a huge pressure from the medical world to do pro-active surgery. Get your ovaries removed because there ARE no screening tests for this horrible cancer and usually when they find it, it’s too late. Get your breasts removed and reconstructed in order to lower your chance of cancer to a small fraction of the percentage. You can take preemptive drugs like tamoxifin. It all seemed so … drastic. It had me wanting to throw up.
But I finally went ahead with it, thinking that my children deserve to know and so I could understand if this path was worth continuing or not, praying fervently that the results would be negative.
I took my husband with me for the appointment.
I do not have a BRCA2 gene mutation like my mother. It was negative.
I breathed a sigh of relief.
Until she said the next statement, “This means that you are no longer in the high-risk category due to your genetics, however…. we’ve looked over all your own personal history and we still feel that you are high-risk. We would like to continue to keep you in the high-risk program and monitor you regularly.”
It’s not over. I want to cry. Just leave me and my breasts alone.
I’ve gone back into hiding. I don’t want more ultrasounds, mammograms, or MRIs. I don’t want more biopsies to riddle me through with holes. I am not returning phone calls or making appointments. I am putting my head back in the sand. Maybe it will all just go away.
Except… it’s not.
I’m now 11 weeks pregnant with my fourth child. My midwife even said to do regular self-checks because IF there was any small cancer anything in there, pregnancy often makes it develop faster and makes those lumps appear. And I worry about breastfeeding. I’ve had 3 biopsies since the last baby – are they going to affect my ability to nurse my babe? I’ve been told that the needle-style biopsies shouldn’t have caused any damage, but still I worry.
I’m only 7 years away from the age my birth mom was first diagnosed. That birthday looms closer and bigger all the time. In the back of my mind, I worry, hopefully needlessly.
I don’t know what to do in order to take this cloud off my head and allow me to move on with my life.
But I do know it doesn’t involve a collection of well-marketed pink products.
And it definitely lasts longer than one month a year.
Lisa Marie Fletcher