Judging by the number of phone calls I’ve been receiving over the past couple of days, I feel I should let everyone know that I’m still alive and kicking but have been sucked into a black hole of indecision. Or perhaps that’s the wrong analogy. I’ve made up my mind several times with conviction, only to retreat upon learning a new statistic or hearing a different opinion. So maybe I’ll instead say that I’ve been surfing in an ocean of treatment studies and risk data, riding the crests and hoping not to drown.
Last Thursday I spoke with Dr. Jeske on the phone for about an hour. First, she described the latest pathology review. Whereas the specimen had originally been sliced into pieces no thicker than 1cm, it was newly cut into pieces no thicker than 5mm. All of the sections were viewed by one or two additional pathologists who found no additional foci of invasion. This news was quite reassuring, because I can now conclude there are most probably no hidden invasive tumors exceeding 0.5cm in size, thus removing an uncertainty of great significance.
To answer some of the questions about treatment, risks, and side effects I had emailed her, she said that the leukemia risk with both AC-TH and TCH is real and not just theoretical. A local recurrence might be treated with re-excision, radiation, or possibly systemic (chemo/Herceptin) therapy. Herceptin, and sometimes the chemo drug paired with it, is cardiotoxic. It can affect up to 22% of treated patients significantly, reducing the left ventricular ejection fraction (the amount of blood pumped out with every contraction), though not atypically with reversibility of damage. Neuropathy (loss of feeling or function in the fingers and toes) is another serious and common side effect, and of course death is a nasty side effect that is always possible when injecting poisonous substances into one’s body.
She had consulted with several colleagues about my case and all of them concurred on not recommending adjuvant therapy. She does have one fellow oncologist who would treat me if I insist, but it would be against that physician’s better judgment. When I asked what a reasonable recurrence risk vs. treatment risk threshold might be (10%? 15%?), she replied that there is no magic number and that the level of recurrence risk at which one would decide to treat is a very personal decision, but that my level might be lower than others’ since I’m younger and healthier than many patients as well as hormone receptor negative.
BTW, my deadline for starting chemo would be two weeks from today, exactly eight weeks after surgery. Of course, I really have maybe just a few more days to work out a plan since it would take time to finalize treatment with a doctor, possibly have a port inserted (for easier injections), and schedule the first injection. So no pressure there.
In summary, if the cancer doesn’t kill me, the stress might. Or, quite honestly, if I don’t stop pestering her with questions soon, Dr. Jeske just might have to do it. At least then I won’t have to make up my mind.
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