As a woman with high impact pain for 38 years, I was stunned last July to receive a triple-negative breast cancer diagnosis. Seriously, God, how much more can I endure? I felt the tumor for a year before being checked because, with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities, I didn’t think cancer treatment was an option.
It took me half a year before plunging into the impossible – and I started chemotherapy in January. With triple-negative cancer (the worst prognosis), the only prospect of living includes chemo. If I was responsive to the drugs, I believed I had a shot — if pain didn’t destroy me first.
I’d done my shopping and found an oncologist willing to follow my integrative doctor’s advice for the best outcome with fewest side-effects. That meant lower and slower dosing, no Neulasta (a wicked drug that keeps your immune cells robust at the cost of intense bone pain), infusion breaks, supplements to ward off neuropathy, and acupuncture before each infusion.
I was also diligent about my healthy, cancer-fighting life style choices – a plant-based diet, daily intensive exercise, regular mindfulness meditation, removal of toxic people and excellent sleep hygiene.
It worked! My oncologist’s dream goal of 18 infusions is one away from being in the books (most people stop at twelve) and I can’t stop smiling as my follow-up imaging is crystal clear.
Despite every western oncologist chiding me along the way for doing my chemo “less effectively” with complementary integrative therapies, I’ve had a clinical complete response. This is the hope of everyone with triple-negative.
Conversely, the only person I’ve met with this rare sub-set of breast cancer relied solely on western medicine – and her cancer has already metastasized to her brain.
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 breast 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.