It’s the fifth time I’m bucking the advice of my oncologist.
I’ve already shared in this online journal about the time when I questioned the dosage of herceptin, when I insisted to remove Benadryl from the pre-infusion list of drugs, when I had to push to have him agree to my getting a portal catheter inserted, and when I freaked at the cost of the hormonal therapy he prescribed.
Now I’ve decided not to complete the full 17 sessions of herceptin (generic name: trastuzumab) infusions. I’ve already done 10.
I wouldn’t blame you if you’ve concluded I could be the patient from hell.
But hear me out. And then tell me what you think.
The best patients are the worst patients. Nudge, nudge, nudge. Don’t sit back and accept anything that fails to satisfy you. Speak up, protect your interests.Claire Fagin
As I’ve written before, the biopsy done after the lumpectomy surgery last September revealed that the tumor in my breast was a triple positive cancer, meaning estrogen-receptor-positive (ER+), progesterone-receptor-positive (PgR+), and HER2/neu-positive (HER2+). My anti-cancer treatments to date have included breast and lymph node surgery, chemotherapy, inserting a portal catheter, radiation, and 10 herceptin infusions, and I’ve started daily hormonal therapy. Details aside, this entire program, although monstrous, is clearly the prescription in the current state of medical science.
To the credit of my oncologist, he has, in each instance of my pushing back, stated his position, then left it to me to decide.
My job as a physician is to make sure I have provided my patients with the best options to make the decisions that affect their lives.Ami Bera
Today I’m focusing on the HER2+. In simplest non-medical terms, HER receptors are normally good guys; they are genes with a code for a protein that our cells need to regulate normal cell growth and to stay healthy. Trouble in the body begins when the gene mutates, becoming either under- or over-expressed.
In my case, it’s the second. Being HER2-positive means the receptors have become like bunnies in spring, reproducing cells uncontrollably and resulting in a cancer tumor. Herceptin works by targeting HER2 receptors directly and stops them from entering cells, so they can’t divide and duplicate.
Now I get to the part on which the science is contested: whether 6 months of infusions are as beneficial as the current standard therapy of 12 months.
A large 2018 study concluded that 6 months was enough. Later meta-analysis questioned the statistical conclusions of that study and recommended that until further studies were undertaken, it was safer to stay with the 12-month regime. I’ve linked to two of several studies, if details interest you.
Yet when I read the absolute numbers, I’m thrown right back to my thoughts on statistical averages. There is less than 10% difference in 10-year survival outcomes between the two groups of subjects studied (6 vs 12 months). In both cases, for women like me, in stage 1, non-lymphatic, and triple-positive, the chance of being alive and disease-free after a decade was in the 80%-range.
Where my unique body will take me is anyone’s guess. 80+% does sound hopeful, so the odds are good for continued health. And the reason I agreed to any treatments at all.
But I could be wrong—I could also be in that 12-18% group who don’t make it far. And that’s whether I get the full 12-month course of infusions or not. It’s a crap shoot.
So, what can’t you take? Decide which of the two options is harder, and do the other. That way, no matter how hard your choice turns out to be, at least you can find comfort in knowing you’re avoiding something even worse.Josephine Angelini
What irks me more than anything is that there are no testing procedures available (now or later) to determine whether, after all the treatments, my (or anyone’s) HER2 receptors are still faulty or back to normal.
There are two other concerns that have led me to decide not to continue the prescribed herceptin treatments.
While I tolerate the drug herceptin well and experience no evident side-effects, one concern I have is the notable risk of heart muscle damage. On my own initiative, I had a 2D echocardiogram test done some months ago, shortly after I learned of the risk. It already revealed the onset of valve regurgitation, meaning a valve does not close completely between heartbeats, making blood in the aorta flow back into my heart. A cardiologist read the report and told me this condition was common for a woman my age and not yet alarming.
So, my thinking is, why do anything to encourage further heart weakening? An event last month reinforces this thought. While I was in the Cordillera mountains, a short 30-minute climb up a hill made me breathless, with my heart palpitating so furiously I had to stop and sit to let my heart slow down several times. Not good, methinks.
Another concern: should one’s financial condition affect medical decisions? Maybe not, but the stark reality is, at least for many patients globally without full medical coverage, they do. Even the medical research admits this.
In my case, our limited budget has definitely played a part in how I’ve responded to treatment options. My life has been rich with relationships and experiences. Of material wealth, I can say, with a full measure of gratitude, I’ve had enough. Having modest material demands helps. Yet our work efforts over the past decades, however satisfying, did not translate into a monied bank account.
The cost of all the anti-cancer interventions has been onerous for us. This medical regime has put us out-of-pocket in the tens-of-thousands of dollars for tests not covered by my medical insurance or for co-pay requirements. For example, my cost for each herceptin session is nearly US$500. To some, that’s not much; to many others it’s a fortune.
I must mention a handful of compassionate friends who, without being asked—they were curious enough to ask—have contributed to my health kitty. Feeling truly blessed. Their loving generosity has moved me intensely. They helped lessen a severe financial burden.
Maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.Elizabeth Gilbert
There you have it; I’ve made yet another decision. I made it with a critical eye on the evidence, with a realistic eye on our circumstances, and mostly with a large dose of self-compassion. Now wish me some luck.
What do you think?