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Zero Risk is Never, Ever Possible
Over the last many weeks, many of you know that I have been going through chemotherapy. (You can read one of my posts here.)
When I learned that chemotherapy was recommended after having a single mastectomy, I was stunned; we’d detected the tumors early, they’d removed the breast, and the cancer had not infiltrated my lymph nodes. But according to one of the latest, most sophisticated tests (oncotype), I was at high risk of recurrence of breast cancer at my age. The oncologist explained that the “ideal” number of rounds of chemo would be six (every three weeks), but four would be “acceptable.”
At this point, I have completed three rounds. I know that there are many women who find the treatment very debilitating, and although I was miserable and unwell, it could have been worse. But my husband and I began to rethink the decision to go more than four rounds. What was the source of our hesitation?
First, I’m reluctant to rely primarily on the statistics of the test results. It doesn’t take into account my good health before breast cancer, and we are realizing that although statistics can be helpful, it’s just another way of guessing, or of making decisions. Second, although I haven’t yet shown any symptoms of peripheral neuropathy (tingling, numbness, or pain in the extremities), it turns out that those symptoms can appear after the chemo regimen is completed. How often does that happen? It’s unclear since little research has been done to determine the after-effects of chemotherapy. And if neuropathy occurs, it may or may not disappear over time.
So, I plan to set up an appointment with the oncologist as soon as I can. Clearly, he can’t make the decision for me about whether to continue, but I want to be sure I’m understanding as much as possible about the implications. Regardless of my decision, I still plan to get the fourth round of chemo, just to have the satisfaction that I met the “sufficient” measure of treatment. I will be interested in knowing the doctor’s thoughts on the difference between “ideal” and “sufficient.”
* * * * *
My husband and I keep reminding ourselves that medicine is a science and an art. There are never perfect answers; determining long-term results is essentially a crapshoot. And we will never know the degree of long-term damage my body has incurred that will never be recovered. But at 71, I care a great deal about the quality of life, and I believe I’m ready to move on.
Life never can have “zero risk,” but I’m ready to take my chances.
Published in Healthcare
I hope people who have relied on test results, particularly regarding cancer, will weigh in. I’d so appreciate your perspective.
I think you are very right to question these things.
It bothers me how some doctors and scientists just default to a blanket solution as though there are no other risks or factors to consider.
To know the real statistics, the study should be of a population similar to you, your health, level of activity, diet etc.
I think a lot of us learned that lesson when being assaulted with irrelevant stats regarding Covid.
Susan, I really admire your positive attitude throughout this ordeal. I surely couldn’t have been easy. You continue in my prayers for complete healing.
Stephen Jay Gould wrote about this uncertainty, and the misguided way laymen interpret statistics, when he was diagnosed and given a year to live (or whatever it was).
A very entertaining and enlightening read; you might find it interesting. (You’re right about remembering your general good health at the beginning of the ordeal, that’s one of the factors that plays a large part in finding yourself on the good side of the distribution.)
You have all my best wishes and support, dear lady.
Yeah, I’m in the Susan Quinn fan club too. Rational self-reliance does it for me every time. Susan, here’s to 81.
You’ve been in my mind, Susan.
I think I mentioned that my daughter, forty years old, is also undergoing chemo (after a lumpectomy).
I don’t know how many treatments she will undergo. She had her first infusion just a few days ago. She was quite nauseous afterwards.
Let’s pray that you and she have a good outcome.
A good doctor wants to do everything in his power to heal, @franco. I’m just not convinced about how much treatment that requires. Thanks for weighing in.
I’ll drink to that, @barfly! Thanks!
I wish your daughter the very best, @kentforrester. Although I’ve had a kind of malaise, it stops short of–well, you know. I don’t need to be too graphic. They’ve given me lots of drugs to keep the nausea at bay.
Since we a never given a guaranteed span of existence it is always and ever a question of quality of life. “Quality” is composed of a lot of individual preferences, obligations and desires. You are the only one that can make that judgment. And whatever judgment you make about that, will be right for you. It doesn’t matter whether someone else would make a different decision.
So true, @rodin. Some people would say the disruptions I’m experiencing right now are temporary: tasteless food, poor sleep, losing weight, fatigue. And I’m not carrying my load as a partner in the marriage, either; just temporary, but I hate it. And then no matter how hard I work at getting healthy again, there’s no way to know if I will encounter limitations.
There are so many little things in our lives that we might not take notice of, because we are busy doing other things, or we are too busy or pre-occupied to pay attention. Those are the lost moments, gone forever. I want those back.
I’m with you on the risk vs reward thoughts. I had my chemo before surgery (lumpectomy) and radiation afterwards. I guess you would say that the chemo did its job because biopsy of the tumor afterwards showed no cancer at all. But it left me with neuropathy that appears to be permanent – no pain but numbness in my feet that really affects my balance, and in my hands that causes me to drop about a hundred things a day.
The last time I saw my oncology NP I told her that I was not even given a choice of radical surgery and easier chemo afterwards. The docs were apparently focused on combining a good medical outcome and a good cosmetic outcome. Which I did get and should not complain. But the neuropathy has affected my quality of life. Perhaps I would have chosen your path if all the possibilities had been explained to me but I just don’t know. But if I had known then what I know now I think I would have chosen the quality of life over one lousy breast.
Anyway, it’s good that you are giving this serious thought.
I wonder if they are afraid of giving us too many choices and confusing us, or if they think they know best. I think that we got a lot of the information that was available, but I’m still bothered by the details I mentioned. Thanks, @justmeinaz.
I continue to think of an article I read several years ago reporting that medical doctors are far less likely than the general population to receive certain types of treatments. I discussed this with my doctor (in concept, as I have never had cancer or any other truly significant illness), and he confirmed that when dealing with patients doctors want to heal the patient in front of them, but collateral effects are somewhat remote for the doctor. But when the doctor himself (or presumably herself) is faced with the collateral effects being their own, they often see healing of a specific disease as less absolute.
In general, I think we have come to expect too much from medical treatment. We think there should be a “perfect” solution, but usually there are just “bad” and “less bad” outcomes. As with almost everything, tradeoffs are involved.
I can’t speak from experience regarding your particular treatment, but I would want to know the NNT, the “number needed to treat,” and the NNH, “number needed to harm,” for this particular treatment. I’d also want to know the absolute, not the relative risk numbers both for having chemo and for doing nothing, even though “doing nothing” is no longer an option for you. You may be able to look up most of this for the particular drug(s) you have been taking. Like you, I’d be particularly concerned given your previously very healthy state.
Very interesting, @fullsizetabby. And I’m not at all surprised!
Of course we have seen this dilemma argued extensively over the last 15 months. The infectious disease people insist on doing every measure possible to try to halt the transmission of a virus. But for them the collateral consequences (depression, economic displacement, delayed medical care for other issues, alcohol and drug abuse, domestic violence, social disintegration, delayed or prevented schooling, etc.) are “inconveniences” not of their concern. But somebody is going to bear those “inconvenient collateral consequences,” and so ought to have a say in whether curing the disease is worth the cost of the collateral consequences. I don’t know how any individual, let alone a society, balances the risks of a particular disease against the risks of trying to resolve that disease. But I do know that neither is completely risk free.
The worst thing about the “pandemic” is the total banishment of any treatment for people who get the disease, before it gets bad enough for them to be hospitalized. In what infectious disease, ever, has the medical establishment absolutely banned most sorts of treatment that people can get at home (like Hydroxychloroquine and Ivermectin)? The morbidity and mortality of Covid could have been greatly ameliorated if the so-called experts had not quashed any and every existing medication, so people don’t have to be hospitalized. And all the “fear behaviors” might not have happened, if people knew that they could take a cheap generic drug that would make the progress of their illness not as bad. I think this is the worst kind of medical malpractice.
Your objection requires that HCQ and ivermectin actually are efficacious and we have no good evidence they are. The situation you describe is hardly unique- in the US, you cannot get almost any drug without a prescription and few MDs will prescribe medications that don’t work for an infection b/c that is definitely malpractice.
My own experience differs from yours in that cancer was not a surprise; I was watching for it. Every male member of my father’s side of the family died of cancer, and I lost a brother to it. So when the prostate biopsy came back, I opted for the most agressive treatment: I had it removed ASAP. It wasn’t in time to catch the cancer before it got into my lymph system, so we’ve been on hormone therapy to starve it and regular bone scans to see if it lights somewhere. Last November I developed a compression fracture in my spine, and sure enough, a spot appeared. So on Thursday I’m starting a two-week course of radiation treatments that should blast the little bastard before it gets bigger.
I have had outstanding care from the University of Rochester medical system’s Wilmot Cancer Center. After the initial interviews, both my oncologist and his head nurse practitioner complimented me on how knowledgeable I was about my condition and the available alternatives. I told them that my secret was the book The Emperor of All Maladies by Siddhartha Mukharjee. It’s a two volume book that I never could have gotten through, but I had it in audiobook form, narrated superbly by Stephen Hoye, and I’d listened to it three times. They told me that for any med student who had anything to do with oncology, the book is required reading. So, we were literally on the same page.
I sincerely believe that when scary stuff happens, the best thing you can do is inform yourself thoroughly. There is no worse fear than “what do I do now?” In the Refuse to be a Victim classes that I teach, there are studies that show the most important single factor in surviving a threat is to have a plan, to have thought through what you would do if confronted. I think that goes for life in general; maybe there’s more similarity than I thought in having cancer and getting mugged.
Wonderful response, Doug. Thanks for your confirmation for the importance of being well informed! Hoping for great outcomes for your radiation treatment.
For what its worth @susanquinn, my late father was a General Practitoner/Surgeon who retired in 1985. I recall him telling me about patients with serious/sometimes fatal diseases that ‘people aren’t like milk in cartons with expiration dates’. I recall that he said that people with strong, loving families/relationships/social networks and religeous patients usually seemed to recover or outlast any “how long have I got” estimates.
I don’t recall who on this thread that stated that ‘Medicine is both a science and an art’ – it really & truly is. It requires that encyclopedic knowledge of anatomy, biology and chemistry for starters, the interpersonal skills are very important and too often neglected (maybe by self-selection? Busy people with the smarts to make it through all that aren’t the most chatty types). There’s also the perserverence to try new strategies/fight those illnesses – to not give up while on the other hand, have the wisdom and compassion to help a patient pass comfortably with dignity.
Prayers and well wishes to all those who noted their health challenges here.
Thanks so much, @wicon. I’m convinced your father is right: my loving husband, friends and living a life of meaning will take me a long way. It doesn’t guarantee anything, but it sure makes a difference. BTW, I’m the one who mentioned that medicine is both science and art! After meeting with the Nurse Practitioner this morning, we haven’t changed our view about stopping at four treatments. But we still need to meet with the doc.
I had a decade-long medical adventure that was very much on point; it’s involved enough that I’ve thought about turning it into a post of my own, but I’m not sure how interesting the details would be to anyone who didn’t live through it. The recurring theme, though, was exactly the lesson you’re talking about here: I learned how much of a guessing game medicine is, and how everything (even noninvasive testing) is a tradeoff with its own risks.
One of the things I learned during that experience (I say “learned,” but only because it was a conclusion I told myself) was what you allude to: statistics are great at describing aggregate data about large numbers of people, but they are actually of little value as predictors in an individual case. I learned to listen to my doctor, regardless of what I might read online, because only my doctor was privy to the details of my situation.
Things turned out OK for me, and I don’t really have any regrets, in the sense that I think my doctors (and I) made the best decisions we could make with the information we had at the time. But I think my doctors and I were both biased toward doing something, and if I had it all to do over again, I think I might have put a little more weight on the idea of waiting and seeing.
Thanks, @bartholomewxerxesogilviejr. My doctor doesn’t really know me that well personally, although I’m sure that he is dedicated to doing everything he can to prevent a reoccurrence. I also think because I haven’t been deathly ill from the chemo (which could be due to all kinds of factors), that he will recommend continuing treatment–just because he thinks he will be increasing the chances of avoiding cancer again. But I’m not sure that at 71 years of age, that’s enough. And I don’t even know if that belief is true.
Sorry you, Susan, are having to go through this. As well the rest of you dealing with cancer treatment.
So many are having this.
It seems someone mentioned Covid in the mix.
Not a doctor or any kind of professional so here goes.
Me: rare cancer presentation I claim “divined” my my physician. Removed by full removal of breast and first three lymph nodes. After pathology, onc decided no chemo, only kill the estrogen. The spec for how long to take that increased from five to seven, then more years. I moved to a new area. New docs said no more estrogen killer. Frankly it was hard stopping taking it though I had been anxious to quit the med. So now six month pictures.
DH: in new area ugh, rare cancer of the blood requiring chemo. First treatment set pushed back the problem.
He has no immunity system now and we awaited the vaccine. LOL! He contracted asymptomatic Covid. Two points: first, I spent the whole Covid madness telling people it was a novel virus not a sin so just deal with it and second, we will be unlikely to get to Covid zero in our lifetime.
The onc practice cancelled his three month visit because though cleared of Covid active/infectious, etc he could not produce a negative test…exactly what ER warned him about on another surprising issue (HBP).
Both just two cases in the strange mix of us humans and disease.
😉 and of course (!) the vaccines were not tested in our disease community so of course among the meds he took are ones that kinda negate the vaccines. <sigh> 😂🤣😆😜
So new joke from us: no one denies we are cancer patients. Are friends now gonna read the news and decide we must wear signs indicating we are not-vaxable so never again are we allowed in polite company? A hoot a minute for very serious concerns. Ayuh we both are and have “fully vaccinated.”
I don’t get over here daily. Hadn’t picked up the news!
Get all of the info and carry on!
You seem to have maintained your sense of humor through all this, how I can’t imagine! Or maybe you’re just being sardonic. But you illustrate beautifully that no matter how much we think we know, we don’t know. I hope life goes on for you two in a more sane manner. But you’re right: we must carry on, @eleanor!!
I’m so inspired by your approach and attitude through all of this. You’ve handled everything with such courage and grace. You remain in my thoughts and prayers.
Thanks so much, @midwestsoutherner. One of my main concerns is not to be a burden. This is all tough on my husband, too. So I try to recognize what’s going on during not-so-good days (today is one) and realize that being a drama queen is debilitating and hurtful. That attitude seems to work.
Extra prayers and blessings on you today, this not-so-good day. Our women’s prayer group meets tonight (still virtual) — we’re saying the rosary, and I will be saying it with you in mind. Much love.