Multiple Second Opinions

astrojockey
astrojockey Member Posts: 2
edited May 2021 in Uterine/Endometrial Cancer #1

My mom has clear cell endometrial cancer and adenocarcinoma. After a hysterectomy followed with carbo-tax chemotherapy and radiation, she had a clear PET scan last summer. However, she had some intestinal trouble last November and learned that the cancer had recurred, presenting in her small intestine. She had part of her small intestine removed and then 4 chemo treatments with doxil. Last week's PET scan showed that the doxil was not very successful, the cancer having spread in her groin and pelvic region and lymph nodes and presented in her lungs. Her oncologist is recommending clinical trials, citing only about a 15% chance of any kind of success with FDA-approved chemotherapy.

I think it's clear we're in a territory of "try a clinical trial and hope it works." I'm definitely going to get at least one second opinion. To me, it seems like it might make sense to get multiple second opinions-- it seems like the more experts look at the situation, the higher chance there is of someone saying "I've worked with several patients just like this and have a really good idea what kind of clinical trial will work." However, when I spoke to my mom's primary care doctor, he did not seem to be a big fan of talking to multiple places; rather, he feels like one of the hospitals is "the best." I can sort of see his point-- the top cancer center will surely have a recommendation, and would we really want to go against that? I guess my response to that would be that I might, if someone at one of the other institutions expressed a unique insight. The other real consideration is time-- we don't want to lose more weeks chasing more opinions, expecially if it's likely that we'll get more or less the same advice from everywhere. Finally, I don't know whether going for lots of opinions in a short period of time will put us on shaky footing with insurance. I'd be willing to go out of pocket a few thousand dollars for the second opinions themselves, but I'm just worried about delays with treatment and testing approvals down the road if I get put on a "naughty list" for requesting too many second opinions. My mom has Medicare Parts A & B, with a Plan F supplement.

Sorry; I know that's a lot, but any thoughts on any aspect of our situation would be much appreciated.

 

TL;DR: 

1.  Is there value in getting multiple opinions before deciding how to treat my mom's recurrent advanced endometrial cancer?

2.  Could I be putting us in trouble with Medicare by getting multiple opinions at the same time?

Comments

  • Forherself
    Forherself Member Posts: 1,018 Member
    #2
    Welcome Astrojockey

    I am sorry to read about your Mom's problems.  You sound like a wonderful son or daughter to your mother.  If she is being seen at a cancer center, I think most of them have tumor boards, and review each others cases, which is kind of like a second opinion.   I think Medicare does pay for a second opinion, and if it differs a lot from the first opinion you can get another. But you have to go to the Medicare website or call them to get authorization.  I do have Medicare but I hear the wait is long on the phone.  If. your second opinion is at another cancer center, then they may also have a tumor board that reviews her case, so you will have more input.  I'm not sure a second opinion has to delay treatment.  I don't think her first doctor would resent a request for second opinion.  It sounds like you could talk to her cancer doctor.  Lots of patients ask for a second opinion.

    Also, has she had genetic testing on her tumor?  Maybe she already has if they are recommending clinical trials.

  • astrojockey
    astrojockey Member Posts: 2
    edited May 2021 #3
    Forherself said:

    Welcome Astrojockey

    I am sorry to read about your Mom's problems.  You sound like a wonderful son or daughter to your mother.  If she is being seen at a cancer center, I think most of them have tumor boards, and review each others cases, which is kind of like a second opinion.   I think Medicare does pay for a second opinion, and if it differs a lot from the first opinion you can get another. But you have to go to the Medicare website or call them to get authorization.  I do have Medicare but I hear the wait is long on the phone.  If. your second opinion is at another cancer center, then they may also have a tumor board that reviews her case, so you will have more input.  I'm not sure a second opinion has to delay treatment.  I don't think her first doctor would resent a request for second opinion.  It sounds like you could talk to her cancer doctor.  Lots of patients ask for a second opinion.

    Also, has she had genetic testing on her tumor?  Maybe she already has if they are recommending clinical trials.

    thanks, Forherself

    appreciate the response. I believe she has had genetic testing done. The oncologist who has been treating her referred her to a local doctor who does clinical trials, and he mentioned he believes some targeted therapy trials may work based on the genetic testing results of her tumor.

    The more I think about it, the more I feel like staying focused on just one second opinion at the big cancer center that my mom's primary doctor recommended is the right course of action right now. I fear trying to go to others runs the risk of stringing things out longer, and as you said, the big cancer center will have a tumor board through which several points of view will be gathered. I feel the most important thing is to start trying things ASAP.

    P.S. Thanks for the warm welcome. I'm her son, by the way.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #4
    astrojockey, Forherself,

    astrojockey, Forherself, having first hand knowledge, gave great guidance.  Prayers for your mom and the entire family.

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