Disclaimer – this is my own personal journey. I am in no way advocating or suggesting that people follow the path I am taking, instead reach into your heart and discover the directions for your way forward.
But how can you have cancer if you never lost your hair?
Believe it or not, I get that a lot. After all, we were raised on after-school movies where Mary’s mother goes through cancer, becomes bald and frail, but thanks to Mary’s lemonade stand Mom gets better and all is well.
It’s either that or the Disney movies where the mom dies in the first few minutes and Mary goes on to discover her own personal power.
Either way, we have pre-formed ideas of what cancer should look like.
And my cancer does not fit into any of that ideal.
When I was first diagnosed, I assumed that chemo was going to be involved. While I didn’t have any experience with breast cancer, I had some friends who had and I KNEW that chemo was a standard part of the treatment.
But then I started reading. And then I read some more.
And then even more.
And I started doubting that the best way to treat my cancer was to simply check boxes off of a standard of treatment cancer list.
My cancer is a grade 1 (slow growing), ultimately the tumor was relatively small, and there was no evidence of lymph node involvement.
I started coming up with my own plan.
I opted for a bi-lateral mastectomy (there was lots of pushback on that, but I was adament. My breasts were trying to kill me, I wanted them both off.)
I also did not want any lymph nodes removed during surgery.
SACRILEGE!!
My biggest fear was lymphodema. Take my breasts and ovaries away, you can even take my legs, but I need my hands to write. I wasn’t willing to take any unnecessary chances.
I met with an oncologist who wanted me to do chemo prior to surgery. I decided against it. I didn’t think it made sense (again for me.)
I met with a radiologist who wanted me to have 6 weeks of daily radiation post-surgery – followed by a few BURSTS. The general consensus is that if you have a mastectomy you do not need radiation. Think of having it as insurance, I was told. I decided against it.
As it turned out, post surgery, the tumor was much smaller than anyone had thought and I had clean margins – radiation was taken off the table.
After surgery I went back to the oncologist. She had ordered an Oncotype test and I was there for the results. This test scores your cancer on a scale of 1 – 100. Anything above 25 means that chemo would most likely be more helpful than harmful. Anything under 25 means that chemo would most likely be more harmful than helpful.
My score was 14.
So she couldn’t advise chemo (although she did talk about it as “insurance” – a word that I’d discovered is used often in cancer treatment.) Instead she started talking about estrogen blockers. But because I have had dozens of bone breaks due to a car accident when I was younger, I had concerns about bone pain – a common side effect from this medication.
I had also had surgery that removed my ovaries and while estrogen is created by other organs, I had definitely reduced my hormone load with that surgery.
Not a problem, she said, we’ll put you on the other version. The other one being the one that is used in pre-menopausal women (which I am not.) It felt like it was more important for her to check that medical box off the list than it was for me to have medication that truly fit my needs. I declined.
“Well then there’s nothing I can do for you.” I agreed and I have never gone back. I have breast cancer, I do not have an oncologist and I’m absolutely fine with that.
So here I sit with a history of cancer that caused me to amputate several parts of my body. I get blood work done on a semi-regular basis to check for tumor markers and I pay attention to my body for any strange symptoms. I do not do scans.
I understand that I am taking a HUGE chance. Cancer does not care what you think and it certainly does not play fair.
This is what feels right for *me*.
Things might change in the future, but for now, I’m okay with my decision to treat my cancer with surgery.
This doesn’t mean I don’t take “self-protective” actions. I watch what I eat, I drink lots of water, get exercise (walking) and take supplements (one is an estrogen reducer, DIM, that has no side effects and has proven to help keep breast cancers under control.)
Have I made the right decision? Who knows, I may be one of the luckiest people on the planet earth, or I may be one of the dumbest.
But for now and for the foreseeable future, I remain with hair and hands that continue to type.
And I can live with that.
