Struggling with my MD's style

Posted by ncteacher @ncteacher, Jun 6, 2023

I had a visit with my oncologist Monday morning. This is the third one since this process started. I am told he is a good MD, and I think that's likely the case--but his approach as he talks to me bothers me. To put it bluntly, I feel like he's written me off. He tells me how many months I'll have until I "start feeling it" or that it "wouldn't be responsible" to go back to my part-time teaching job in August because "by December you won't be able to continue." As he said before, I have "one year, two years, three years." I am aware that this is a difference in style--he believes in being frank and honest-- and he's coming from a knowledgeable position of seeing many more cases than just mine. I know this is a lousy cancer, but I'm looking for support and encouragement as well as information, and I don't feel like I'm getting it. As a result, I am really discouraged every time I see him. After meeting with him Monday, I went into chemo nearly in tears. I don't give up easily, and I'm willing to work to fight this cancer and get a little normalcy back in my life. I don't want to switch practices because the nursing care and the hospital system have been incredible, but I'm wondering whether it is worth inquiring about switching MDs. Or perhaps I should say something to this doc the next time. I haven't said anything to him yet. I'd be interested in hearing your perspective. How do your doctors address the challenges and the prognosis? Please tell me about their approach and their style. And thanks for letting me vent.

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@markymarkfl

@pendesk8 , congrats on your hopeful news! Do you have the name, NCT number, or drug description for that trial? Was it also dependent on your specific mutation? (I don't recall clearly, but did you have ATM?)

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nct # is05687110 The drug is novobiocin for brca and other mutations.mine is ATM mutated.Good luck.

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Thanks so much for this, I have the BRCA1 mutation. Have responded to chemo with 5-FU and oxyplatinum. Developed allergy to the oxy, favored in BRCA tumors after 11 cycles of treatment, also have neuropathy. I went from borderline to resectable with surgery scheduled 21st. I am wondering what I might need afterwards, hopefully just olarib and no more chemo.

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So you belting tomPanCan? A pancreatic association that will help you. Sign up if haven’t. I switched oncologist because of bedside manner, I emailed pancam and asked for the best oncologist and gastroenterologist in Cleveland area and they gave me names and I did switch. I felt I was giving these men my life and wasn’t happy. Just a suggestion, we all have different issues. Good luck my PC friend

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Thank you for posting this (and I'm sorry that I have little to add). My onc has a very dry, brusque manner, and I'm still not sure whether he's the best choice for me; it's been only a few months (he met with me c. 3-2-23 briefly, then for a long "what to expect" appt. on 3-17-23, then twice briefly since the start of chemo, which was 4-4-23). So far I find his dryness helpful, but I do also sometimes feel as though he's rushing me out -- that maybe, unconsciously, he thinks that a 61yo Medicaid patient shouldn't expect much -- ? (Apologies to him if I'm misinterpreting his demeanor.)

I would cautiously encourage you to think about -- just think about it, don't act yet -- talking to yours: telling him that you value his his medical expertise and somewhat appreciate his candor but at the same time his style isn't a good match for yours -- that when you leave his office you feel discouraged and depressed -- and that you'd like him either to respond to you differently (which he probably can't do) or to help you find another oncologist at that medical facility, one who would be a better match for you.

Good luck.

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@pendesk8

Went to Maryland yesterday with great results.I am accepted in the trial as long as they can get a needle biopsy.The trial is the new antiobiotics thats been killing cancer.It will be a pill in the morning and one in evening.The trial starts at the end of june and I have to do a 4 week wash out.so next step will be a needle biopsy and I'll be good to go.Anxious and ready to start.

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pendesk, do you mind if I ask whether you mean Kimmel Center at U of MD? I live in Maryland, which is why I'm asking.

I'm at the almost-start of my journey -- 6 chemo infusions, some ambiguity about whether my cancer has metastasized, waiting for news next week about what comes next (radiation, or rad. + surgery, or surgery) -- and I've glanced at a list of clinical trials, just in case. So that's why I'm asking for a little more info about any relevant names (facility, the trial, the physician conducting it), if you're comfortable sharing it.

I wish you good results! Take care.

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@gamaryanne

@ncteacher Only God knows when it is our time. I truly believe this. doctors are mere humans. Did you know Ruth Ginsburg had pancreatic cancer? Probs it not. It was diagnosed many years ago. She went through treatment, had surgery then lived her life until another tumor popped up. She then had treatment/surgery again. She passed in her late 80s.
All good physicians welcome 2nd opinions. Do not give up that job! The world needs teachers and I am sure you are a blessing to the children and teachers around you. Be a light on the hill and do not give up as long as you have something to contribute. I had a small issue with my onco but I have come to understand him and will stick with him. However, I am travelling to another institution next week for a second opinion on next steps. You are loved and you are needed I am sure! This is a nasty cancer but it can be managed. Be your own Ad o age and find a doctor that is on your team and wills to be a part of your CURE team. I did! He is my surgeon.

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gamaryanne, just an anecdotal fyi -- one of the 1st things I did after my diagnosis was look up RBG's medical history, bc I knew that she'd had pancreatic cancer with nodules on her lungs (me too), and that she and I have a few other things in common, both genetically and environmentally. So I agree that she's a source of inspiration for those of us with this crummy disease.

I wish you well.

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@mayoconnectuser1

pendesk8,

I know you may feel you have been wronged at some point, but saying something like, "Drs think its up to them when we leave here ,guess what ,it's not." is both unfair, inaccurate and not reflective of the facts of their long education, training and dedication to you, their patient.

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@mayoconnectuser1 : I'm respectfully asking you to think about how you phrase things ----> "I know you ***may*** feel you have been ***wronged*** at some point" is a bit judge-y and even incendiary -- not helpful for anyone struggling with this disease -- and it's also inaccurate (one of your criticisms of the comment you responded to -- " ... is both unfair, inaccurate, and ... ").

Instead, perhaps: "I hear that you aren't getting what you need from this doctor" -- factual and no judgement. Affirming even as you post an opposing viewpoint in the rest of your comment.

I mean no offense; my goal is to help keep things respectful and help keep the temperature down. Thanks.

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@gamaryanne

I’m 19 months out from stage IV diagnosis and have decided it’s just a label. They have to call it something for so many reasons..incl.insurance!!!
Every day we get is a day closer to answers for each of us individually.
I am going to John’s Hopkins for a second oncology opinion to get insight to anything I can do that is proactive instead of reactive! We must be our own advocates. The cancer docs are immersed in a busy busy world.

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@gamaryanne: I'd be very grateful if you'd be comfortable sharing the name of your onc. at Hopkins (I live in MD). Thank you, and best wishes.

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