Why won't Dr.s cite thier sources? How to navigate?

Sopho
Sopho Member Posts: 41
edited December 2017 in Just Diagnosed

I have been to 5 doctors since my diagnosis (surgeon, ocnologist, radiation ocnologist, plastic surgeon, second opinion oncologist) and all but one of them flat out refuse to talk with me about the science/research that supports thier opinions. Most of the time my questions are met with low key annoyance to out right hostility.

Snippets of what I am dealing with:

*Asking my surgeon how she knows how much more needs to be removed if I choose a second lumpectomy and being told she goes on intuition. Followups on what may inform her intuition and if there is any research that helps her know how much to cut is met with "I have been doing this for xx years. I just know. Etc." We ask her if there is anything visually she looks for and she states "it all just looks like fat."

*Asking for information about what the research says about recurrence rates and expressing that I am concerned about loosing my insurance. I am told that I shouldn't worry about affording treatment because "there is always money for cancer treatment" and when I pushed for the research info around recurrance (no answer), asked if any studies on survival rates had been done with individuals who were uninsured (rolled her eyes) and if the survival rates change at all given age at diagnosis, she snapped back saying "I told you survival rates are the same, if you were really worried about your future health you would lose weight" and attempts to return to my original question were brushed off."

*Being told that the plastic surgeon only does one type of reconstruction, but it is the best kind for me...when I mention an article about a study put out by the American society of plastic surgeons that suggested failure rates were reduced with another type of surgery for people like me he snapped back that we did not know what they meant by failure rates. When I asked him if he had access to the full study to see what they meant he told me that there was no one in this area who does that type of surgery anyway so I should just drop it. When I went back to my surgeon and asked about it she sighed and offered to refer me to a plastic surgeon 8 hrs away...when I said I would rather know more about if this is really a better option before I take time off and travel that far she told me all she could do was make me the referral.

*Having my second opinion oncologist tell me that the local recurrence rates are the same for lumpectomy vs. mastectomy. When I ask for the studies that show this he looks on his computer for a bit then says it may take him a while to find it. When I email to remind him to send me a link and mention I can't find any studies saying they are the same he sends me back this:

As we discussed, the Overall survival and breast cancer-related survival is identical. The local recurrence rates a different part once again the breast cancer related survival are identical. The trials or also from 1970s, The documentation of the other prognostic factors like estrogen/progesterone receptors and HER-2/neu are not available. The chemotherapy regimens that they received are did not use the status. These patients also did not seem to have received Tamoxifen.

Which i can't really make heads or tails of but I think is saying that the studies are not there/reliable?

This is just a few examples of it but it is like this with everything.

My radation oncologist was awesome... he sat down, answered questions about the research i had read and brought forth some other important research i should know about and helped me understand how it affects my treatment options and informs his decisions. This is what I want from my other doctors. However, that does not seem to be a possiblity and the radiation oncologist not involved in any of my preradiation care.

The research studies I have been bringing up are in peer reviewed journals. My husband and I both have a backgrounds in graduate level science research, but we are not medical professionals so we neither have the access to full studies or the knowledge a doctor would have about which studies should inform my care. I don't feel comfortable making major decisions about my body without talking through these things with a medical professional, but I can't seem to make that happen.

I am considering changing doctors again but we are getting really strapped on money and time off work and I have not even had treatment yet.

I am feeling very stuck.

Any help/advice/resources would be appreciated.

· Share on FacebookShare on Twitter

Comments

  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    Sopho- I'm sorry I don't have any answers on how to get the data you need from your docs. I'm not in scientific research directly but I work with the published studies in 3 disease states and their treatment all day long. I'm also big on investigating and gathering all the information I can on my and my family's healthcare concerns. With my background a lot of it comes down to what do the relevant studies say. And these oncology docs and surgeons in particular don't like it one bit and don't know what to do with us. They get very used to the patients that accept whatever they say as gospel and are not used to anyone pushing back or knowing as much or even more than them. We were upfront with the MO on what to expect from us/me and while I think he's getting it, he's still not there and often ends up changing his treatment plan which is always in the super conservative side because I push. Surgeons get very testy when you want information on or are thinking about doing a surgery they don't do. Ridiculous if you ask me. I may not have MD after my name but it does not mean I'm unable to comprehend the data and draw well founded conclusions

    What type of recon were you asking about? I may be able to help there.

    · Share on FacebookShare on Twitter
  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    Sopho,

    Some of this is really rude and self-serving behavior on your doctors' parts. I wouldn't trust the first plastic surgeon. He doesn't want what's best for you, he wants money, which flows best from unquestioning patients.

    Your surgeon? Hard to know. It would be easier to know if her thought process is reasonable if she weren't rude, but there are definitely a lot of docs who want to just jump from one exam room to another and questions throw them out of wack, which they resent. I hope she uses something other than "intuition" to figure out how much tissue to remove, and best case scenario is that she is not good at transforming the cognitive processes she uses for this action into language. But still, no reason to be rude, and who knows if it's best case scenario?

    But some is reasonable. The surgeon referring you to the plastic surgeon really can't and professionally should not try to speak for the plastic surgeon. That's true of any referral: it's stepping on the consultant's toes in a huge way to put answers in their mouth. Any doctor valuing their license is going to evaluate you on their own and not blindly trust what the doc making the referral has told them, and docs making referrals shouldn't be making the referrals if they can answer the question themselves. Even a referral for consideration of a procedure comes with the implicit question, "Is your procedure a good idea for this patient?" A good way to think of it is that a referral to a consultant is basically more like asking a question than ordering a specific service. So while itt's not reasonable to sigh and roll eyes, it is reasonable to explain the limits on speaking for another doctor who is in a different specialty.

    Who was it who couldn't answer your questions about losing insurance? Those are reasonable questions but not ones a to which a doctor would usually know the answer. I can think of a better answer than a brush-off, though: "In these times with the instability in healthcare payment I understand you may be worried. I'm worried too. I don't know the nuts and bolts of who might pay for your care if you lose your insurance, but I'll make sure you talk to X." Medical practices always have a business manager, and there may be people with other titles in bigger practices to help figure out payment sources, for example assisting with Medicaid applications. The crux is, it doesn't matter if there is research about outcomes for patients with and without insurance: we don't and are not likely to live in the same payment world those studies were done in, and, unless those results would change how you proceed right now while you have insurance, they won't affect your care. They may make your more nervous or more confident, but they aren't likely to affect what your doctors do unless you know a specific date you will be losing coverage. What you need to know is what they could do for you to find a payer if you lose insurance.

    About the mastectomy vs. lumpectomy: I have no idea why an oncologist couldn't find the answer to that. Unless it's a doctor in their 60's, it's not likely they were in practice when the studies were done, so they won't remember them as the kind of earthshake that a doctor remembers when the study came out while they were in practice, but it doesn't mean it's hard to find the answer. Here are the very first two really big-time publications about this comparison (simple Pubmed search, "mastectomy AND lumpectomy AND mortality," limited to clinical trials), and there have been a lot more since. In these two, radiation wasn't even standard with lumpectomy - that information came later:

    https://www.ncbi.nlm.nih.gov/pubmed/3883167

    https://www.ncbi.nlm.nih.gov/pubmed/2927449

    Like I said, these are the first two. There's a lot more, including the question of +/- radiation. They were just a beginning.

    Edited to add: I don't blame you for being unhappy with this bunch. Every time I've asked a doctor for what they're using as evidence, I've gotten an answer. Once it was, "I'm not sure of the source, but ask her" and the "her" had the answer. I was happy with that. One time it was "I'll find that and get it for you," and he did. I was happy with that, too. Are you in a big city? Do you have lots of choices? I can't weigh for you time missed from work for appointments and cost, but if you're really unhappy I don't know what else to suggest other than see another doctor.


    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited October 2017

    Here is a thought to add the the helpful answers above. Can you see doctors whose credentials include "professor"? You'll sometimes see this after a doctor's name. If in addition to seeing patients they teach classes or residents, they will be in more of a teaching mindset, and they may remember sources to cite. You would want to look at university teaching hospitals or NCCN centers for these doctors.

    Another thought is that these doctors are under pressure to see a certain number of patients in a certain amount of time, because of money. So whenever you can do some preliminary research and bring copies in, you'll have a starting point. One time I brought a stack of papers to my surgeon and he pointed to one paper and said, "That's the important one. That's the one you need," and we discussed the paper.

    Also, and you have probably done this, it is important to convey an attitude of respect and teamwork so the doctor does not feel you are putting him/her on the spot. I have told my onc that I respect her knowledge, opinion, and experience, and that I do best when I understand as much as possible about my situation and her recommendations. If out-of-the-ordinary questions come up (common with me) I say things like, "Hmm, so how do we find out if..." She may ask a colleague or look into something and get back to me. Or she may say, "We really don't have enough data on that. We just don't know at this point." (We in this case meaning the medical community.)

    Tell your radiation oncologist that you appreciate the way he discussed your case with you in-depth, and ask if he can recommend an oncologist or (whatever other doctor) who might also be a good fit. That sort of thing worked for me.

    Good luck, Sopho!

    · Share on FacebookShare on Twitter
  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    ShetlandPony's idea to ask the radiation oncologist is a really good one. Doctors generally have an idea of the strengths and weaknesses of their colleagues, especially the interpersonal ones because that's what the patients talk about most. You need someone willing to take the time to answer questions thoughtfully, and if the radiation oncologist cares about that (evidenced by his behavior that he does), he's probaby made mental notes about what patients have mentioned over the years. I love the phrase of "a good fit."

    · Share on FacebookShare on Twitter
  • Sopho
    Sopho Member Posts: 41
    edited December 2017

    Thanks everyone for your help!

    I ended up switching my care to Mayo. It is a pain...7.5 hours away...but I feel so much better. I can't believe how much of my stress was just related to feeling like no one was listening to me and I couldn't get the answers to my questions.

    Today we met with my surgeon for the first time. When we brought up a study she was not familiar with she stopped, took the time to read through it, then helped us understand what parts did and did not apply to my case. After all the crap we got from my original team, this almost made me cry.

    Here is just a sample of the difference between the two (M=Mayo, OT=Original Team):

    (All answers are close to direct quotes)

    How do you know how much tissue to remove?
    OT: Intuition.
    M: We have a pathologist in the room who immediately looks at samples to make sure we have clean margins.

    How do you know what is breast tissue and what is not?
    OT: you can't, its all the same
    M: it is different

    How do you know that there is not more cancer elsewhere in the breast?
    OT: we don't know for sure, but don't worry about it because it's unlikely
    M: we have tests for that (and they found more cancer).

    The worst part of it is that every time I talk with a new Dr. at Mayo I realize just how bad our original doctors were. The worst part is the realization that we were being pressured to just go with the procedure they wanted and would have ended up with a big spot of cancer still left in my breast. It is really frightening that we were so close to that happening.

    Moral: get second and third opinions, don't accept "we don't know", don't trust doctors who wont talk about research.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2017

    Dropping in on this thread late, but I applaud you for your willingness not to settle for medical care you don't trust. My late husband decided he didn't want to get treated in metro Phoenix or Tucson when he had a cancer dx so long ago, and I believe that had he been willing to temporarily travel a few hours there he might still be alive. Instead, he used our mediocre Cancer center, and his treatment was shoddy at times.

    He died 21 years ago, and when I had my dx, I steered clear of the same cancer center that treated my late husband. I traveled 1 hour each way for better care. If I had to, I would have also engaged Mayo, 2.5 hours away. As is, I did get my second opinions at MD Anderson, and subsequently realized I was getting the same care in Sedona, so I didn't have to travel so far.

    I did go to MD Anderson again for a second op on my BMX and recon surgery, and the young surgeon there had only done a few surgeries and didn't believe he could do surgery and immediate recon on me--(I wanted to stay the same size--small). I went back to my local plastic surgeon who I had been working with on and off, and he, and my breast surgeon, had worked together for 20 years and done probably hundreds of this type of surgery, so I was able to have my surgery here at home.

    Point is, you have to push, and check, and interview your medical team to see which one you want to hire. That takes time and it also might mean you, if you at all can, travel to get the best care, esp. if you live in a rather isolated city with few choices as I do. IOW, we have to be proactive about our own health and not settle simply because it's convenient.

    As for lower rates of survival for uninsured women...see link for an article supporting that argument, May 2017.

    https://source.wustl.edu/2017/05/uninsured-breast-...


    · Share on FacebookShare on Twitter

Categories