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.

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  1. Midwest Southerner Member
    Midwest Southerner
    @MidwestSoutherner

    Susan Quinn: Either way, I’m struggling.

    Praying for peace and strength as you navigate these conversations.

    • #1
  2. JustmeinAZ Member
    JustmeinAZ
    @JustmeinAZ

    Are you sure the cough is nervous? I coughed my brains out while I was on chemo.

    Susan, I know it can be intimidating but I know you are strong enough to make the decision yourself – you will do what is right for you.

    But here’s another question – how frequent have your treatments been – every 3 weeks? Can you not sacrifice another 6 weeks just to “be sure”?

    • #2
  3. Caryn Thatcher
    Caryn
    @Caryn

    As you know, I’ve been there.  One thing I can tell you is that when I stopped taking the pill, the terrible depressive feeling I’d had almost immediately lifted.  That’s not chemically explainable.  I felt immediately better because I’d put it behind me.  Eight years now, and counting.  I wish (pray, daily) you wisdom and comfort in your decision.  Once you make it, don’t look back!  Call/text/email me anytime if you want to talk about it.  You may also, like I did, find that the doctors are more amenable to stopping earlier than you think.  Many, maybe most, patients are so frightened by the idea of cancer that they want to do everything possible.  Docs aren’t as used to patients with a less is more attitude.  Mine were all fine with me going off the drug.  You may find the same.  I hope you do.

    • #3
  4. MarciN Member
    MarciN
    @MarciN

    I suspect the anxiety you are feeling is fear of cutting yourself off from these people. “If I don’t follow their advice, can I go back later if I need to?” That’s a very difficult situation to work through.

    It’s something doctors need to get out in front of, I think.

    The doctors at the Lahey Clinic where my husband is a cancer patient are fantastically mature and easy to work with. The experience has given me a lot of confidence in dealing with other doctors.

    A few doctors aren’t emotionally mature people. Their attitude is, “Okay, don’t take my advice. But don’t call me if things go wrong.”

    Just keep in mind that if they are not helpful at this point, then maybe if you do sever your relationship, you haven’t lost anything anyway. You have a lot of options.

    • #4
  5. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    JustmeinAZ (View Comment):

    Are you sure the cough is nervous? I coughed my brains out while I was on chemo.

    Susan, I know it can be intimidating but I know you are strong enough to make the decision yourself – you will do what is right for you.

    But here’s another question – how frequent have your treatments been – every 3 weeks? Can you not sacrifice another 6 weeks just to “be sure”?

    The problem with going the extra infusions is that I increase the risk of neuropathy and other side effects, including osteoporosis (I’ve already fought osteopenia). Those side effects can also show up long after the chemo is over. So that’s the extra complication and I don’t feel I want to deal with it. By the way, there is data that the side effects can show up late, but little research on how often and to what degree. So it’s not over when it’s over.

    • #5
  6. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    MarciN (View Comment):

    I suspect the anxiety you are feeling is fear of cutting yourself off from these people. “If I don’t follow their advice, can I go back later if I need to?” That’s a very difficult situation to work through.

    It’s something doctors need to get out in front of, I think.

    The doctors at the Lahey Clinic where my husband is a cancer patient are fantastically mature and easy to work with. The experience has given me a lot of confidence in dealing with other doctors.

    A lot of doctors aren’t emotionally mature people. Their attitude is, “Okay, don’t take my advice. But don’t call me if things go wrong.”

    Just keep in mind that if they are not helpful at this point, then maybe if you do sever your relationship, you haven’t lost anything anyway. You have a lot of options.

    Lots of helpful comments here, @marcin! Actually, I liked the oncologist; I think my imagination might be making him into someone he’s not. As @caryn said earlier, he might be just as willing to stop as I am.

    • #6
  7. lowtech redneck Coolidge
    lowtech redneck
    @lowtech redneck

    I lack the knowledge or personal experience to say anything particularly helpful, but know that we’re all rooting for you and supporting you, whatever your decision, and are sending either prayers or positive thoughts your way, for both your health and for the emotional strength to pursue the course of action you believe is best for you.

    • #7
  8. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    lowtech redneck (View Comment):

    I lack the knowledge or personal experience to say anything particularly helpful, but know that we’re all rooting for you and supporting you, whatever your decision, and are sending either prayers or positive thoughts your way, for both your health and for the emotional strength to pursue the course of action you believe is best for you.

    You have said something incredibly helpful, @lowtech-redneck. Thanks so much.

    • #8
  9. CACrabtree Coolidge
    CACrabtree
    @CACrabtree

    Heavy decisions to make; extremely heavy.  Will be praying that the path you take will be the right one.  Positive waves coming to you from Appalachia.

    • #9
  10. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    CACrabtree (View Comment):

    Heavy decisions to make; extremely heavy. Will be praying that the path you take will be the right one. Positive waves coming to you from Appalachia.

    Thanks, @cacrabtree. I can feel them all around me!

    • #10
  11. RushBabe49 Thatcher
    RushBabe49
    @RushBabe49

    Lots of prayers and good wishes (always) going your way.  I actually support your decision, knowing some of your physical characteristics.  Can you get another opinion, from a doctor who doesn’t know you well and can be more objective?  New eyes may help you.  However, in the end it’s your body, and your life, and only you can decide which course to take.  Head held high, back straight, smile on your face, and confidence in yourself will carry you forward, regardless of the decision you make.  Best wishes!

    • #11
  12. Old Bathos Moderator
    Old Bathos
    @OldBathos

    I hope your doc factored in all the relevant factors.  There is a 5-10 year additional life expectancy for tough Jewish broads (as an old Jewish doc of my acquaintance once put it).  Do what preserves serenity as well as life.  All the best.

    • #12
  13. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    RushBabe49 (View Comment):
    Can you get another opinion, from a doctor who doesn’t know you well and can be more objective?

    I know that would seem to make sense, @rushbabe49, but I like the idea of meeting with my internist who knows me pretty well. The reason is that I feel strongly that who I am and what I’m like has a lot to do with this decision (unlike other times we might consult a doctor where full objectivity is important). I hope that makes sense!

    • #13
  14. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    Old Bathos (View Comment):
    There is a 5-10 year additional life expectancy for tough Jewish broads (as an old Jewish doc of my acquaintance once put it).

    Who knew??? I feel so much better, @oldbathos! I definitely needed the laugh, plus he’s probably right! Thanks so much for your good wishes. 

    • #14
  15. iWe Coolidge
    iWe
    @iWe

    Remember that doctors often choose much lower levels of cancer treatment than they recommend their patients! Some of that is because the know the toll it takes, and they also have to make patient decisions that are more influenced by legal recommendations.

    So here is my wager: your doctor will be totally fine with you cutting things off early. As long as you make it clear that this is your decision, they won’t object. It’ll be fine.

    That said, prayers heading your way!

    • #15
  16. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    iWe (View Comment):

    Remember that doctors often choose much lower levels of cancer treatment than they recommend their patients! Some of that is because the know the toll it takes, and they also have to make patient decisions that are more influenced by legal recommendations.

    So here is my wager: your doctor will be totally fine with you cutting things off early. As long as you make it clear that this is your decision, they won’t object. It’ll be fine.

    That said, prayers heading your way!

    Cool! Your comments along with others’ are very reassuring. Now I can’t wait to see what happens! Well, almost . . . 

    • #16
  17. JustmeinAZ Member
    JustmeinAZ
    @JustmeinAZ

    Susan Quinn (View Comment):
    The problem with going the extra infusions is that I increase the risk of neuropathy

    Yep, and I know I’m one of the ones who has warned you of that. Ooops, I was going to say to stop tearing you’re hair out over this but…….duh.

    • #17
  18. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    JustmeinAZ (View Comment):

    Susan Quinn (View Comment):
    The problem with going the extra infusions is that I increase the risk of neuropathy

    Yep, and I know I’m one of the ones who has warned you of that. Ooops, I was going to say to stop tearing you’re hair out over this but…….duh.

    Good one!

    • #18
  19. Doctor Robert Member
    Doctor Robert
    @DoctorRobert

    Susan, some thoughts.  I’m an osteoporosis specialist and a cancer survivor, although I did not get chemotherapy.  I declined much of the monitoring that my oncologist recommended on the grounds that quarterly abdominal CT scans for five years was too much radiation exposure. I hope this gives me some insight into your quandary.

    The decision you have made is yours alone to make.  You don’t need to justify it, you don’t need to defend it.  Just tell your internist and then your oncologist, “I’ve decided not to take further therapy now”.

    Don’t burn bridges.  Use gentle language.  “Decline”, don’t “reject”, the therapy.  Don’t “buck” or “defy” your Doc.  Just state your choice, simply and without elaboration.  If asked for an explanation, make it short, plain and personal.  “I just don’t think this is right for me”.  No one can argue that.

    Oncologists are the most numerate Docs we have.  This is to their credit.  Their professional societies manage large numbers of trials generating millions of data and they have scientifically-proven protocols for everything.  Every last thing.  So your oncologist will know the data.

    But data only apply to populations.  People are not percentages.  People are either zero percent or 100 percent, there is no in-between.  Declining a round of chemotherapy which would reduce your risk of relapse from 10% to 5% does not double your risk of a relapse. The chemotherapy reduces the number of relapses in 100 women from 10 to 5.

    But you are not one hundred women.  You are Susan. There is only one of you.   You will either have a relapse, or you will not have a relapse.  One-hundred percent or zero percent. You trust the data that the Docs have given you, and you trust yourself and your husband and God to lead you to the right choice.  Once made, that choice takes you outside of statistics and into reality.

    The reality is that you will live or you will die. If you take the extra treatment and relapse and die, your suffering will have been for naught.  If you decline the treatment and live, you didn’t need it anyway.

    Do what you know is right.  You can always change your mind, come back and take the treatment later.

    God bless you, Sue.

    • #19
  20. Seawriter Contributor
    Seawriter
    @Seawriter

    The difference between you and your doctor is that you are committed and he is involved.

    What is the difference between the two? In a breakfast of ham and eggs, the pig is committed while the chicken is involved. Make your decisions on that basis.

    • #20
  21. Rodin Member
    Rodin
    @Rodin

    All medicine is based on treatment falling within a predicted range of outcomes for individuals. And those outcomes tend to cluster within the desirable part of the range if it is to become the standard of care for a particular disease. No doctor knows that patient in front of them will respond in a specific way. The doctor can only provide information about probabilities without knowing that a particular patient will obtain the highest probability outcome, positive or negative. It is an educated guess, but a guess nonetheless. For the past several decades it has been expected that patients will take informed consent seriously and not completely defer to the doctor’s best guess. I don’t think any good physician would be offended. The might be saddened if they think you are making a mistake. But they also understand that they cannot know that you are making a mistake. They are treating you only in one dimension and cannot make judgments involving all of the things you value and want to consider. 

    • #21
  22. Unsk Member
    Unsk
    @Unsk

    All my prayers for your recovery.

    Some suggestions:

    A. People who have trouble enduring the Chemo treatments sometimes will use an “ionic foot spa”, which you can buy on the internet which will suck the toxins out of your body through your feet. My father was down for the count after only two Chemo treatments, but we used the ionic foot spa on him and he got up the next day ready for more treatments. He completed his Chemo regimen and survived. 

    B. People with high vitamin D content don’t get cancer and/or get rid of it.  My daughter takes a drink called “Liquid Chlorophyll” which provides great nutriments for your body and helps your body absorb vitamin D.

    C. If you choose to go off your Chemo, a doctor I know recommends the “black Molasses and Baking Soda ” treatment which you can find on the internet and it will make your body more alkaline.  He has had 3 patients who survived stage 4 with it. Cancer cannot survive in a body that is alkaline. Rigorous use of this method recommends testing your body for PH balance and  recommends you become slightly alkaline for a few days, but only a few days.  Check with your doctor if you do this.  

    In any case, getting rid of sugar, alcohol and carbs in your diet will make your body more alkaline which will help your body fight the cancer. 

    • #22
  23. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    Doctor Robert (View Comment):
    The reality is that you will live or you will die. If you take the extra treatment and relapse and die, your suffering will have been for naught.  If you decline the treatment and live, you didn’t need it anyway.

    Thank you so much for your kind and thoughtful remarks, @doctorrobert. The only correction I would make is that the doc said if cancer showed up again, it would be too late to do further treatment. I don’t care. Things change. I’m living my life in the present. Your words are very reassuring. I normally do trust myself, but I feel so out of my comfort zone. But I feel more resolve. I don’t need to be defiant. I just need to be clear. Again, thanks.

    • #23
  24. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    Rodin (View Comment):

    All medicine is based on treatment falling within a predicted range of outcomes for individuals. And those outcomes tend to cluster within the desirable part of the range if it is to become the standard of care for a particular disease. No doctor knows that patient in front of them will respond in a specific way. The doctor can only provide information about probabilities without knowing that a particular patient will obtain the highest probability outcome, positive or negative. It is an educated guess, but a guess nonetheless. For the past several decades it has been expected that patients will take informed consent seriously and not completely defer to the doctor’s best guess. I don’t think any good physician would be offended. The might be saddened if they think you are making a mistake. But they also understand that they cannot know that you are making a mistake. They are treating you only in one dimension and cannot make judgments involving all of the things you value and want to consider.

    As always, great wisdom @rodin. I feel like so many people are providing insights for the ages. Thank you.

    • #24
  25. MiMac Thatcher
    MiMac
    @MiMac

    The problem with statistics is that they only work over a population- your risk of recurrence (as far as your concerned) is binary- zero or one hundred percent. The choice is yours to make. During a procedure a few years ago I inadvertently stuck myself with a hollow point needle after it had been deep in the neck of an HIV positive patient (It was incredulous that I did that-on an HIV + patient!- I very, very, rarely get stuck). So I took quadruple anti-retro viral therapy for 4 weeks as prophylactic therapy- that was the recommendation. The side effects were pretty bad- so I surveyed colleagues who had HIV positive “sticks”. Not ONE completed the recommended therapy b/c of the side effects (the N was a handful). They all said they couldn’t work while taking the meds. The data on doctors & nurses completing the therapy in such circumstances shows poor compliance with the recommendations. I took all 4 weeks- lost ~10 lbs and felt like crap for a month. I am sure some of the ill feelings were psychological in origin- fear of being HIV infected and what it would mean, but that didn’t make them any less troublesome- for many months after taking the drugs if I read the name of the drugs in a patient’s chart I would get nauseated. But I ran to my 6 week, 3 month & 6 month blood draws so as to be sure I didn’t seroconvert. I am really glad I didn’t need therapy for the rest of my life.
    The last time a had a really worrisome stick was 25 years earlier when I stuck myself while taking care of a critically ill guy who came in from a truck stop wearing a bra & panties (he didn’t have the figure for them BTW, IMHO) with a bottle of breast enlargement pills in his pocket. Not much therapy back then so I got a gamma globulin shots in both cheeks (I tried rolling up my sleeves but the nurse administering the shot just laughed) and prayed…

    • #25
  26. Bob Thompson Member
    Bob Thompson
    @BobThompson

    I will comment on two things.

    I agree with an earlier comment that the cough may not be nervous. I have had at least two instances of developing a cough or a need to clear my throat, one was from an increase in weight affecting my girth and causing reflux and the other was a reaction to a drug, an ACE inhibitor. So yours might just be a feature of the process.

    The other is directly related to your decision. I’ve had two occasions to go through open heart surgery when means a period on a heart-lung machine and ventilator, small risk but some but the outcome of not doing it was a much higher risk, though not immediate. You are in a prime example of a response to authority. Best wishes going forward.

    • #26
  27. Stad Coolidge
    Stad
    @Stad

    My mother got tired of her chemo, and her doctors couldn’t give her a point at which to stop.  Her reasoning was the chemo made her so sick and miserable, she would rather gamble on fighting the cancer if it came back.  She decided on her own to stop chemo, and lived to be 89 . . .

    • #27
  28. Seawriter Contributor
    Seawriter
    @Seawriter

    Stad (View Comment):

    My mother got tired of her chemo, and her doctors couldn’t give her a point at which to stop. Her reasoning was the chemo made her so sick and miserable, she would rather gamble on fighting the cancer if it came back. She decided on her own to stop chemo, and lived to be 89 . . .

    Robbed years from her life by stopping chemo, no doubt. She might have lived to 95.

    • #28
  29. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    MiMac (View Comment):

    The problem with statistics is that they only work over a population- your risk of recurrence (as far as your concerned) is binary- zero or one hundred percent. The choice is yours to make. During a procedure a few years ago I inadvertently stuck myself with a hollow point needle after it had been deep in the neck of an HIV positive patient (It was incredulous that I did that-on an HIV + patient!- I very, very, rarely get stuck). So I took quadruple anti-retro viral therapy for 4 weeks as prophylactic therapy- that was the recommendation. The side effects were pretty bad- so I surveyed colleagues who had HIV positive “sticks”. Not ONE completed the recommended therapy b/c of the side effects (the N was a handful). They all said they couldn’t work while taking the meds. The data on doctors & nurses completing the therapy in such circumstances shows poor compliance with the recommendations. I took all 4 weeks- lost ~10 lbs and felt like crap for a month. I am sure some of the ill feelings were psychological in origin- fear of being HIV infected and what it would mean, but that didn’t make them any less troublesome- for many months after taking the drugs if I read the name of the drugs in a patient’s chart I would get nauseated. But I ran to my 6 week, 3 month & 6 month blood draws so as to be sure I didn’t seroconvert. I am really glad I didn’t need therapy for the rest of my life.
    The last time a had a really worrisome stick was 25 years earlier when I stuck myself while taking care of a critically ill guy who came in from a truck stop wearing a bra & panties (he didn’t have the figure for them BTW, IMHO) with a bottle of breast enlargement pills in his pocket. Not much therapy back then so I got a gamma globulin shots in both cheeks (I tried rolling up my sleeves but the nurse administering the shot just laughed) and prayed…

    I feel like I should laugh and cry for you, @mimac! There are the numbers, and then it sometimes seems like a crapshoot! Thanks for the stories; in a sense, it helps to know others have struggled–especially in the medical field–with these questions.

    • #29
  30. Susan Quinn Contributor
    Susan Quinn
    @SusanQuinn

    Bob Thompson (View Comment):

    I will comment on two things.

    I agree with an earlier comment that the cough may not be nervous. I have had at least two instances of developing a cough or a need to clear my throat, one was from an increase in weight affecting my girth and causing reflux and the other was a reaction to a drug, an ACE inhibitor. So yours might just be a feature of the process.

    The other is directly related to your decision. I’ve had two occasions to go through open heart surgery when means a period on a heart-lung machine and ventilator, small risk but some but the outcome of not doing it was a much higher risk, though not immediate. You are in a prime example of a response to authority. Best wishes going forward.

    Thanks for sharing your experience, @bobthompson. Actually, I’ve been having seasonal allergies, especially at this time. Normally I just put up with it, but I suspect everything going on is exacerbating my reaction, including watery eyes and phlegmy cough. I’ve taken an allergy pill to see if that helps. I remember the time of your heart surgery. So glad that all turned out well!

    • #30