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Pushing Back on the Medical Establishment Is Not so Easy
I should have known that a big decision about changing my chemotherapy regimen, rejecting my oncologist’s recommendation, wasn’t going to be so easy. I wrote about it here, describing a discussion I will be having with him on Monday. But now I realize that there is more involved than just looking at the statistics and research. It means, from a big picture standpoint, that I will be bucking the “science,” telling the experts that when it comes to making decisions about my life, all the numbers in the world can’t determine what is best for me.
Only I can do that. And I am very anxious about telling him my decision to defy his recommendation. I’m even nervous about discussing my situation with my internist on Friday prior to that meeting. Am I just wanting the treatment to be finished? (Yes.) Am I tired of being tired? (Yes.) Do I want life to return to normal? (Yes.) And in spite of all those desires, I believe I know what the best course is for me.
I guess I’ve been just as outspoken as anyone else about condemning the Covid-19 experts who repeatedly have said “it’s the science,” when in fact they are clueless about the actual science (the little there is). But when it comes to consulting with my own doctors, face-to-face, and knowing that I am going to disagree with them (or at least one of them), I’m intimidated. Rationally, I know that I have the final say about my treatment; doctors rely not only on the data, their years of experience, but also on their own intuition and their desire to heal. I also realize that I can look at the same data and come to different conclusions, based on what I know about myself, information, subtle and obvious, that my doctors don’t have access to.
But I am still anxious about “just saying no.”
I do realize that physically I am not my usual self. I do feel more fragile, less resilient, and I’m quite frankly not in the mood to be defiant. My husband will back me up, but ultimately, it’s on me. I’ve even developed a nervous cough that I haven’t experienced for over 20 years. I can tell myself that this question of how I will proceed will be resolved by next week, and the cough will likely disappear, but that is little comfort.
I can’t tell if I’m more upset about meeting with the doctor, or upset with myself that I’ve let my anxiety get the better of me.
Either way, I’m struggling.
Published in Healthcare
I have a friend whose sister has done exactly the same. She felt she had no quality of life on the chemo so she stopped it. We shall see the outcome.
Susan I think the comments on this thread have been useful to all of us – not just you. I love the reasoning of all these smart docs.
Actually, Susan, part of my doc’s recommendation when I was on chemo was to take Claritin to stave off “bone pain”. Actually I never figured out what “bone pain” was but it sure did help with my allergies.
Claritin is in my collection of pills, but only at the beginning of a cycle. I think it offsets the effects of Neulasta, which is to replenish the white blood cells. When I mentioned that I was getting occasional mild stabbing pains, she said that the body is not accustomed to having the bones stimulated, so it gets a bit of pain here and there. Not a big deal, but the Claritin is supposed to help offset that reaction. So I took one this morning just for ordinary allergy treatment. I’ll see what happens in the next few hours . . .
Maybe. Her sister lived to be 93 . . .
My first wife had an aunt, a stubborn Vermont woman whom everyone disliked. No, that’s not right. Everyone hated her. Anyhow, she got stage 3 breast cancer at age 82. Took surgery. Took radiation. Refused chemo. We had to put her in a nursing home at 88ish, where she lived (and lorded it over the help, you can be certain) until 102.
Susan,
Praying for your wise decision. It is your decision.
I never had chemotherapy and radiation. I was “ugh” about what I did have. And then skeptical when even that was ended.
Dr. Robert is correct. Basically we live or we don’t.
Praying you well. Blessings!
The post from Doctor Robert who recommended using gentle language to firmly state your choice was onto something. Doctors have an enormous range of experience treating an equally wide range of patients who react in many different ways to the treatments they prescribe. But the experience of being a patient is very different from that of being the doctor; there is a big difference between relaying material to your patients and really understanding their changing feelings as they proceed through a grueling therapy program. As the post noted, physicians can relay all the statistics but it’s your comfort and well-being that must be at the forefront of everyone’s thoughts now. I’m keeping you and your family in my thoughts.
I posted this entry on the CaringBridge site:
I had a follow-up visit with the surgeon this morning. He was pleased with my healing, although he seemed less pleased with my decision to stop chemo after four infusions. (He mentioned the mammo-print test which showed I was high risk, but probably knew little about the lack of information on the prospect of side effects showing up after chemo, which they can). Jerry seemed to think the surgeon was not happy that I was considering only four rounds, but I pointed out that he likely didn’t want to seem to take sides. I’m sure there are patients who would visit the oncologist and say “But the surgeon supported my decision!” if he showed the least big of encouragement. So I’m still okay. I don’t remember if I told all of you that unless the oncologist came up with new information, I would stop at four cycles (and the fourth begins on Tuesday). And although I was very anxious about having that discussion, I have let that anxiety go and know that stopping at four is the best decision for me. And I put the future in my efforts to take good care of myself and in G-d’s hands.
I’d like to add that my firm decision not to have the two additional infusion cycles was influenced greatly by the comments I received on this post. Your perspectives on my own empowerment, my right to take exception, were so very helpful and encouraging. I can’t thank all of you enough for your sharing. I could see that I was overwrought, and my judgment about decision-making had become compromised; realizing that fact, everything became clearer. Thank you.
Good for you, Susan. I can tell you are at peace with your decision.
A very good concern. Wife 11 years out from treatment. No cancer signs at all. But lyphoderma in her arm, that surgery did not fix. And neuropothy in her feet that affects her balance. So some walking issues. But no cancer. No advice here. I am just an old lawyer. But over all she is in better health and did what the cancer docs suggested. Good luck.
The downside to more treatments is that a person’s body is being hammered by toxins by each and every treatment.
So are people in the medical establishment figuring out a method of determining exactly how much more any given cancer patient’s particular situation has already been minimized? I have never understood why that hasn’t been determined yet.
With regards to chemotherapy: what a cancer patient is facing is that they are flipping a coin. The health authorities usually present more chemo as bettering the patient’s chances.
In reality, even if and when the extra course helps the patient in the short run, in the long run, they may find the toxins damaged their bodies and they are presented with a new cancer six or seven years down the road.
Additionally, very rarely do doctors mention to much older cancer patients how their bodies have little human growth hormone in their bodies. This item is something a cancer depends on in order to flourish. (This applies to people in their late seventies/eighties and older.) With some types of brain cancers, very little human growth hormone is needed.
But my father decided at age 83 to have a cancerous colon polyp removed, and then to forego any offers of chemo & radiation. I was actually pleased to see my dad’s GP arguing with him to do at least 1 round of chemo. To me, this showed the doctor cared. Far too often, a GP is not that interested in what some old coot decides.
Even so my dad declined the extra treatments. He lived to be 90. Until the last 3 months of his life, he was in quite good shape. (Again decline in the human growth h factor only applies to people in late 70’s & older.) His doctor was still trying to order tests for my dad the week he died. This man tried to get me to buck my sister’s decision that my dad wanted no more, and should therefore be left alone. Again, I was pleased he still was so deeply part of my father’s life, but I agreed with sister and father.
He died on a pleasant July morning, after wheedling a bowl of ice cream out of my mom! When the ice cream was finished, he took a nap, & was off to the Home Dimension. To her dying day, my mom was glad she’d given him his favorite treat, even though it was only 10 in the morning. He died with a smile on his face.
It’s fascinating how things shift and change. From my CaringBridge site yesterday:
This morning Jerry and I visited the oncologist. He cracked me up from the start—he sat down and just smiled and said, so you want to stop with four! No small talk with this guy, and I must say his ability to be balanced was awesome. Here’s where we are and what we learned:
Regarding side effects, particularly neuropathy, the likelihood for getting it does not increase with the number of infusions. It can come on the first infusion or after chemo, but the doc said both of those incidents would be outliers.
He then described the chemo program that I am on, which reduced three nasty chemicals of four infusions every three weeks, to four infusions every three weeks with less toxic chemicals (earning the name “chemo-lite). They worked this program successfully for several years and then did a follow-up program and study (ah yes, studies), which showed that six infusions every three weeks had better results; they didn’t quantify the difference.
So where do I stand now? The doctor said he could settle for four infusions total if that was my decision. But if I had no side effects after four, he would encourage me to go on.
Why would I consider receiving more than four? (1) If I have no side effects, I would have better cancer protection; (2) If I have the slightest side effects after this fourth infusion (beginning tomorrow, Tuesday), we stop. (3) Compared to other cases, I have tolerated the treatments well: my fatigue has been reduced, although I still can’t enjoy food (except my tiny dish of chocolate–chocolate chip ice cream gets through). Many of you also know that chemo can be much worse for some. (4) I’ve decided to begin my “rehab” (getting back in shape) in the next couple of weeks on those days I feel up to it. I already have a trainer in mind—terrific lady—who will know how to help me recover my strength according to my condition.
So, I need to see how I react to this fourth infusion. At the end of it, I will decide whether to stop or go forward. To some degree side effects will be a factor, but quality of life will also count.
Limiting your “go” “no go” decisional factors to one or two is a great approach. And the signal will be clear. The clearer the signal the less second-guessing which is a useless activity once the act is started.