Now my oncologists insist on doing a “minor” surgery to sample tissue from the “tumor bed” and previously effected lymph nodes. If the tissue confirms a pathological complete response, as everyone expects, I’ll have a 90% plus chance of survival for the next 5-10 years. If they find any leftover cancer cells that will embed and begin to grow, we’ll continue treatment.
I can feel those of you with CRPS grimacing. Yes, of course, I want to avoid surgery at all cost, but this is my life, and the hardest decision I’ve ever had to make.
My track record with CRPS and surgery stinks to high hell. As a young woman, I was given an unnecessary LEEP procedure for cervical dysplasia, which I’ve since learned usually fixes itself. As a result of that minor surgery and cauterization, my CRPS spread, and subsequently I was unable to have a baby – which is one of the great tragedies of my life.
When I was 40, I was diagnosed for the first time with breast cancer and told that without surgery, chemotherapy and radiation, I had just a few months to live. I was terrified, but didn’t trust western medicine anymore.
After researching my diagnosis, ductal carcinoma in situ (DCIS), and learning that these calcifications in the milk duct almost never become invasive, I chose to “watch and wait.” Even when my mom broke down, crying and begging, “Please, Cynthia, I just want them to take the cancer out of you!” — I didn’t budge for fear of a CRPS blow up. The calcifications never grew and to this day I warn women about the over care of DCIS.
About a decade ago, a physical therapist wanted to try to straighten my CRPS-contracted right arm. The therapy seemed far too risky, and I only relented when she promised to work exclusively on my head, neck and back. But she cheated and yanked, breaking my right arm. I was at a level ten pain again. It took a year to get an x-ray and correct diagnosis because I was labeled a “catastrophizing” patient.
The orthopedic surgeon told me that without elbow surgery I’d never use my right arm again. In the end, I didn’t trust the medical professionals who broke my arm to “fix” it. Instead, I got into my beloved YMCA swimming pool, did mirror therapy and strengthening exercises in the surrounding area – and my arm slowly regained near-full function.
Fortunately, I’ve forever had the gut instinct to pass on multiple recommendations for spinal cord stimulators and intra-thecal pumps, knowing the surgeries would do far more harm than good.
So here I am again, having to decide on surgery or not. But this time the stakes are much higher.
With the exception of one surgeon I know who understands CRPS because he’s triggered it with breast surgeries, every western doctor is consistent. They’re horrified by the prospect of me not doing the standard of care surgery to confirm or rule out a complete response. When the surgeon heard my plight, he responded with, “Cynthia, this surgery could very well destroy your life.” Damn right.
In my research to glean wisdom for this impossible decision, I’ve come upon two recent, small studies. They support the protocol of post-chemo, minimally-invasive biopsy or “watch and wait” as an effective substitute for surgery to confirm a complete response. This may be the future for treating triple-negative cancer. But in 2020, taking this unproven route would leave me with the terrible anxiety of not knowing. Worse yet, I could suffer a quick recurrence.
What fire do I play with this go around? Do I potentially reignite my CRPS or my cancer embers? All I can do is go with my gut and heart, and call in the good karma chips from the universe I’m certainly owed.
Can anyone thread the CRPS-cancer needle? I guess I’m going to find out.
Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”