Too many doctors

Posted by marcia @marciak9, Feb 26 8:28pm

I was diagnosed 10/22. 12 rounds of chemo and 15 radiation treatments. I’ve been off treatment since last June. My mayo oncologist sees a couple of lesions on my lungs and says we’ll keep an eye on it. My local oncologist wants to dig deeper. Requested a Pet scan. I’m also having extreme pain in my abdomen.

I was referred to Mayo when first diagnosed because I didn’t qualify for a Whipple since the tumor was wrapped around blood vessels. Now that I’m not going to have that surgery either should I just stick with my local oncologist?

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I would answer your question with a question.

Do you believe your local oncologist is as qualified as the oncologist at Mayo? (I am assuming this is Mayo Rochester) ... if so, then you could follow their guidance.

If you don't like the oncologist at Mayo, simply request a different oncologist for a second opinion there. This is what I would do.

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I would take the best of what both have to offer. If the local oncologist has recommended a PET scan, it gives you data you wouldn't otherwise have, so I would get it. Your Mayo oncologist has the choice of whether to review it and act or not act on it. Maybe it reveals something your local oncologist would like to discuss with your Mayo oncologist (assuming they talk to each other once in a while.)

But it's also good to stay connected with your Mayo team in case you need advanced palliative care that your local team can't provide, such as nerve blocks or anything else that might come up requiring pain management.

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Staying in touch with both of your doctors is important. Neither one will be perfect. Keeping them working together is not always easy but you will get better care over all if both teams work together on your behalf.

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Hm. Interesting dilemma. I assume you're asking because your local oncologist appears to be more aggressive in checking out this new development than your Mayo oncologist, especially given the pain you're currently feeling. That would give me pause as well. Have you talked to your Mayo doctor about why they want to watch and wait?

As others have pointed out, this situation raises more questions to consider. Would your doctors be willing to consult with each other on diagnosis and treatment plan? Are you (or your insurance company) willing to pay for those consults? Where would treatment be administered? How far do you live from Mayo, and would going there for treatment cause undue hardships, financially or logistically? Is your local cancer center capable of delivering the treatment(s) you'll need? Maybe most important, are you willing to watch and wait, or do you want to be more aggressive and figure out what's going on sooner rather than later? Ultimately, I think your decision comes down to your comfort level with the analysis and care your local oncologist and their team can provide to you versus the same from your Mayo team. Whatever you decide, I hope you get some answers to your situation soon.

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Thank you for spelling it out for me. That helps to understand the situation. I can do everything locally. I do want to be more aggressive. When I asked the Mayo dr why wait on chemo he said there hasn’t been evidence of longer life by doing the chemo at this early stage so why put me through the misery of chemo. Mayo is 1 1/2 hours to get to so it does create financial burden. I so appreciate you!

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My sister insisted on using our local oncology support - and Mayo consulted on this. She insisted because she wanted to stay with her cats.

I felt and still feel this was a serious mistake. While it may have made no difference, I cannot imagine a local oncologist being as competent as the world class oncologists and oncology technical staff at Mayo Rochester.

My take - coordinate closely with Mayo staff, move to Rochester if necessary (unless you are close to for example MD Anderson, MSKK or another pancan center of excellence). My sense is that local hospitals and clinics will provide you with the standard of care - but, certainly not the best care. This, combined with pancreatic cancer's characteristics, provides the basis for my position.

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I second this. I am fortunate to have a pancreatic center of excellence at my back door but I do not hesitate to get second opinions. Once you have consulted with these doctors, and initialized the portal with the other facilities, it is easy to stay in touch. In fact, consults are always supposed to send their notes to your primary physician. I have recently been to Honor Health Institute and Cedars Sinai. In both cases, each physician poses a strategy/treatment that has not been mentioned prior. Strongly recommend staying in touch with Mayo but perhaps changing physicians. We must advocate for ourselves! General oncologists, even GI specialists, cannot always be in touch with all that is happening in this specialty

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I saw my local oncologist and she ordered a pet scan. She saw a lot more lymph node involvement and recommended a biopsy of one in my lungs. I feel she is more aggressive and this is an aggressive disease. She is going to keep Mayo in the loop.

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@marciak9

I saw my local oncologist and she ordered a pet scan. She saw a lot more lymph node involvement and recommended a biopsy of one in my lungs. I feel she is more aggressive and this is an aggressive disease. She is going to keep Mayo in the loop.

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Glad you got that scan, but sorry it shows something worrisome. Also glad your local oncologist is being so aggressive. Hope that biopsy goes well!

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