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.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I've been through a somewhat similar experience, and asked for a referral to a second specialist (I tried to be polite and phrased it as a referral for a second opinion).
In theory the physician you don't "mesh" with should be open to feedback; however this is tricky, and perhaps makes it worth your finding out if there is a system n place belonging to the institution, that would provide the MD with feedback unlinked to you.
That reminds me that I did have an exceedingly unpleasant interaction with a "nurse" (not sure of her exact credentials) when I was last hospitalized. I asked to speak to her supervisor, who strongly urged me to submit a complaint to patient relations since my complaint was not the first received about her performance.

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@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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@ncteacher i meant to say be your own advocate(sorry-I’m not a teacher or a good typer.

LOL!!

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Best bet is a different doctor. I have told my doctor I don't want any sugar coating, but I find him to be very helpful and supportive. I know that prognosis for pancreatic cancer is poor. I wanted information about prognosis for purposes of using my retirement assets appropriately and couldn't really get a good answer. I accept this also. Prognosis evolves as the response to treatment is seen. Your doctor is not likely to change style. With the trauma of having the cancer, you don't need a doctor who has you in tears.

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Trust me, I switched cancer centers, mainly because of the oncologists I initially saw there. I saw 3 different ones. None of them I meshed with & I do not consider myself to be a ‘difficult’ person. None gave me a lick of hope & I am Stage 1B.

This is your life on the line. We don’t want sugar coating but you do deserve a grain of hope & positivity. We all deserve that! I am much happier since I stood up for myself & switched cancer centers. I feel like my new oncologist is really on the ball! I am at the Lucy Cursi Cancer center at Eisenhower Hospital in Rancho Mirage, CA. Top notch nurses too! The day I had my initial consult with him, blood was drawn for genetic testing. I had the results shortly after. He also sent away for a sample of my tumor, resected st the other place in January. When I asked the ‘other place’ I was told that they only test the tumor in later stages??? I also requested genetic testing & was only offered BRCA testing which was scheduled 2 months out. Severely lacking! How can they effectively treat pancreatic cancer without doing this type of testing? Offer chemo & hope for the best??? I know I made the correct decision by switching. My care, I feel, is now on par with the large cancer institutions in Los Angeles & across the country. Grateful & proud of myself for my tenacity! I don’t have much control over my diagnosis but I do have full control of my oncology team & treatment decisions. I hope that my words give you some encouragement & to help you navigate a new path. You do have options!

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12 months ago I was given the pancreatic cancer news the told I had 12-16 months. After the initial shock wore off and more research I realized that although the odds are really lousy ... THERE ARE SURVIVORS. I kept digging until I found doctors that believed that this ugly disease can be defeated. If you are a fighter ... surround yourself with medical folks that are fighters! After 14 chemo treatments, HIPEC, radiation, splenectomy, internal radiation, and another HIPEC I am happy to say that my stage 4 status is now N.E.D. I know that I'm far from being out of the woods but I'm still standing strong. Surround yourself with fighters and believers and NEVER GIVE UP!!

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Drs think its up to them when we leave here ,guess what ,its not.We don't have a shelf life. I am 1 year into treatment and going to national cancer center in bethesda ,Md monday to be screened for a clinical trial.It hasn't been easy but I was fighting to get into a trial.My Dr.has been no help ,like yours ,and the center is no better.I asked to see a dietician 10 months ago and still waiting.Listen,25 years ago I had stage 4 thymus cancer(I have a gene mutation),I took chemo 6 hrs a day ,4 days straight,for 4 months,went to Johns Hopkins to have surgery,when they took it out it was all dead,chief of staff told me I had a miracle and they never seen this before.
that it was impossible,guess what,nothing is impossible with God.Keep fighting and enjoy your good days.I'll let you know how MD. goes.

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@ncteacher , The docs can only give you an estimate based on past statistics, and some of the docs aren't as diligent about "keeping up with the latest" as others may be. Everyone is different, and so is their response. You -- yourself -- do not have to be just a statistic. You sound like a fighter, and I agree that you deserve a doctor who is as well.

If nothing else, just treating and managing the disease and staying healthy for a few more years might get you to the day when we see an actual cure.

@bobsrdoch , I'm really interesting in your experience with HIPEC. Is there another thread on the topic where I can start doing my homework? Otherwise, I have about a million questions I'd like to run by you.

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@markymarkfl

@ncteacher , The docs can only give you an estimate based on past statistics, and some of the docs aren't as diligent about "keeping up with the latest" as others may be. Everyone is different, and so is their response. You -- yourself -- do not have to be just a statistic. You sound like a fighter, and I agree that you deserve a doctor who is as well.

If nothing else, just treating and managing the disease and staying healthy for a few more years might get you to the day when we see an actual cure.

@bobsrdoch , I'm really interesting in your experience with HIPEC. Is there another thread on the topic where I can start doing my homework? Otherwise, I have about a million questions I'd like to run by you.

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I would also be interested in the HIPEC process. I just did a speedy Google search, and it sounds like something that could eradicate those tiny, flat lesions that scoot under the watchful eye of the CT. @bobsrdoch and @markymarkfl , if you all want to start another thread, I'd be interested to see what you've learned about this.

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@markymarkfl

@ncteacher , The docs can only give you an estimate based on past statistics, and some of the docs aren't as diligent about "keeping up with the latest" as others may be. Everyone is different, and so is their response. You -- yourself -- do not have to be just a statistic. You sound like a fighter, and I agree that you deserve a doctor who is as well.

If nothing else, just treating and managing the disease and staying healthy for a few more years might get you to the day when we see an actual cure.

@bobsrdoch , I'm really interesting in your experience with HIPEC. Is there another thread on the topic where I can start doing my homework? Otherwise, I have about a million questions I'd like to run by you.

Jump to this post

I'd be happy to join another thread and share my HIPEC experiences. I am working on the unabridged version of my story for the story keepers at Mayo and elsewhere ... I'll post it when i have it finished.

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