2nd opinion?: At a conference on mbc... - SHARE Metastatic ...

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2nd opinion?

TammyCross profile image
16 Replies

At a conference on mbc, it was strongly recommended to get a 2nd opinion at any point. I have read this before, heard it before. Many patients at the conference had continuing relationships with the 2nd opinion provider. I asked my 3 main docs about it. My primary said she couldn't help. My oncologist actually said it is a good idea. (I am switching treatments.) At the conference, it seemed like Dana Farber and Johns Hopkins were good. Both do virtual. I was going to do that. My oncologist recommended her same hospital (it is a center of excellence). People say it is best to go elsewhere, because people in the same department tend to think alike. She said she thought virtual was not as good. So there go Dana and Johns. I could go to Sinai, or NYU (where I was for my first bc). Haven't been impressed. Sloan, I heard, does not like to do 2nd opinions and charges a lot, and this isn't covered by insurance. Albert Einstein? I have never heard them discussed around breast cancer. None of my docs will help me find the best hospital, so turning to you.

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TammyCross profile image
TammyCross
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8576 profile image
8576

Oh my, no pressure! Well here are my thoughts. You really don't want a second opinion from the hospital where you are being treated. Usually, oncologists practicing together at one location, have regular meetings to discuss the cases they are dealing with. That way you are getting the opinion of the entire staff. This is good. In any casef the hospitals you mentioned. And they might agree to see you in person anyhow. Do a little research to find out who is the most experienced oncologist where ever you go.

Hope this helps.

Cheers, June S.

Southside25 profile image
Southside25

When you say "none of my docs..." are you referring to oncologists? Can you check with your PCP to get a referral to another oncologist? My PCP gave me a list of potential cancer specialists and I compared those to another list I got from a friend who works at one of the biggest medical centers here in Chicago.

TammyCross profile image
TammyCross in reply toSouthside25

Correct. My primary doc would not help. I don't know. Good luck was her message. I need to find a gerontologist perhaps. She missed my cancer in the first place, for months while I insisted. She used to be involved. She had just started practicing. Now she has too many patients.

Lisa672 profile image
Lisa672

I have a team of very smart and caring women taking care of me. They are all excellent. I was diagnosed with Stage 4 MBC in January 2021 and have been taking anastrozole for the past 2 months. I feel absolutely fine and wouldn't even know that I have cancer. I'll begin taking Ibrance soon and hopefully that will go well too. Fingers crossed. Call and make an appointment with Dr. Gadd's team. Best wishes to you!

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Gingerann1 profile image
Gingerann1

Hi Tammy! I had my second opinion at Duke in Jan. and it became clear immediately that I needed to make a switch. The protocol would initially not change so that was a relief that that was on the right track. For me it was about the level of care, compassion and access to clinical trials and open discussions with my Onc about the latest MBC research and developments happening right there. I drive 3 hours each way for treatment/dr visits once a month and I am so happy I made this decision. I feel blessed to be even that close to a top notch Hospital. It would have been worth it to me to get a second opinion just to have confirmation and peace of mind that your team is on the right track with your treatment. Best to you....

TammyCross profile image
TammyCross in reply toGingerann1

Good info! I was thinking of switching oncologists in the fall, just within the hospital, because I can walk there and have several docs there, most of whom I like. I feel sort of trapped, but I am always interested in hearing stories of people who switched and are much happier. My oncologist is the local PI for the trial I am in, so that is another sticking poing.

Hi Tammy,I just wanted to let you know that I received a second opinion from Dana Farber in February 2021 and I was given the option of in person or virtual. I chose in person, and have been there twice so far. If you are considering Dana Farber you should call and ask about this. In my opinion it is a wonderful place. I see Dr. Nancy Lin at Dana Farber every 3 months and continue with my local care as well. Good luck!

TammyCross profile image
TammyCross in reply to

Oh! Nancy Lin was one of the speakers at the conference, and people who were using her for 2nd opinion (or as primary onc) loved her. I chatted with one of them about seeing her virtually. It seemed she specialized in, or was especially good for brain mets. One of the women on the chat said if I called in, I could get a doc for second opinion who was more attuned to my variety of mbc. I went online, at that point thinking virtual, and there was a form to fill out to get a virtual second opinion. One had to give a credit card that would be charged $2,500 to complete the process. That turned me off.

Not sure I could handle a trip to Boston every three months. Maybe I should. It seems being in NYC, there should be a closer place good for second opinions. NJ, CT are close, and then there is all of NYC.

Tammy,There are many options for how you treat your second opinion. I chose to go to Boston every 3 months and I get my scans there. I live in upstate NY and my local oncology group that I love will work hand in hand with Dr. Lin. I also became aware of her while listening to her speak. I requested her. I know her research interest is brain mets, but she is also one of the oncologists in charge of the metastatic breast clinic at Dana Farber. I have ER+ PR- HER2 equivocal mets to my bones. Diagnosed December 2020. Originally was diagnosed in 2015 with ER+ PR+ HER2 negative breast cancer, stage one. She totally agreed with the treatment I am currently on, Ibrance, Letrozole and Xgeva. She is a most excellent fit for me. As of scans in April, treatment is working very well!🙏🏻 I called and made a self referral at Dana Farber. Never any mention of that charge. My insurance is accepted so I’m not sure what website you tried. I’m sure if you call you can be connected to a new patient navigator who can answer questions. Wishing you the best of luck in finding the path and team that works for you.💕💕 PS What about Yale New Haven? That might be an option that is closer.

TammyCross profile image
TammyCross in reply to

Good idea, Yale! Will look into that. Keep hoping someone will tell me Mt. Sinai is great, because that is the easiest alternative to get to, or MSK -- and perhaps I am being silly about the travel. Sloan is on the East Side so can take 45 minutes.

Nancy Lin. I was told that second opinions aren't covered on Medicare. My oncologist and other docs are at a big hospital that is supposed to be on of the best in the US. I imagine that upstate is less pretentious:) - but my oncologist was open to it. -- Looking into Yale....

in reply toTammyCross

Ahh, I am not of Medicare age as yet. Yale has a marvelous cancer center. My daughter is an Occupational Therapist in their hospital system. She has a therapist friend who works at the cancer center. I can ask her for the top breast cancer names if you would like. She would be happy to do that. I am originally from Long Island, a “downstater “ like you! My nephew was treated at NYU Langone for Hodgkins Lymphoma. Maybe someone has insight regarding breast cancer treatment there?

TammyCross profile image
TammyCross in reply to

Yes, please ask her. I didn't see much at Yale. Looked up best breast oncologists in US. About 4 of top 25 were at Sloan. Dana Farber was there. No Yale, and no Columbia, where I am.

Had my original treatment at NYU. My first oncologist there, who was probably better than I thought, went to Mt. Sinai. They were good, but only the surgeon was really attentive. I should have stuck with her. Left and switched to Columbia where they failed to diagnose mbc despite my insistence, until I went way down hi...

PJBinMI profile image
PJBinMI

Medicare has covered my second opinion appts. I've been dealing with MBC for just over 17 years and my own wonderful, but now retired, onc recommended getting a second opinion right after initial staging, when extensive bone mets were found. I didn't think I needed that but ended up being so glad I went. It was sooo reassuring to my husband and adult daughter, who went with me. I've had 2 or 3 appts, in person and virtual, more recently, since my original onc retired. I was also able to see a cardiologist there who specializes in seeing cancer patients with heart issues. In NY you have quite a few good options and seeing Dr. Lin at Dana Farber could be a great option for you. You don't have to see a second opinion doctor very often. And once you have seen one face to face, virtual may become an option for you. what website did you use to look up top 25 bc oncs? I've relied on the list of Comprehensive Cancer Centers, the top designation in the US, listed on the National Cancer Institute webiste which you can access via the "resources" link on the right side of this page, up near the top. Sloan and Dana Farber both on the list.

TammyCross profile image
TammyCross

Thanks. I got a response from Breast Cancer Community - Breast Cancer.Org, I think from Moderator, saying second opinions were useless, and the treatments are all the same. When I looked around, it seemed there were other clinical trials that might be more useful for me, but this is the one my oncologist is PI on, so that is where I went. Among other things, a second opinion might have other ideas. Also, you say it is reassuring. That would be helpful, if the 2nd opinion doc concurred with my primary oncologist.

Yes, I started with the Comprehensive Cancer Centers. There were many in NY. Sloan, Mt. Sinai, NYU and where I am. I think maybe even Albert Einstein. I have familiarity with the breast oncology departments at all but Sloan. I kind of wanted to try something new. I wanted to hear about personal experiences. Someone here suggested Yale New Haven. I looked up the docs there, and there didn't seem to be many who do mbc or had interesting publications. She said, though, that she could ask a relative who works there and says it is good. I haven't checked whether Yale is a CCC. Would much rather go to New Haven than Boston.

Good to know Medicare covers. I hadn't checked, just read that they didn't. I thought at Dana Farber.

Good morning Tammy!I checked with my daughter and she asked which campus you would like to be seen at if you decided to have a second opinion at Yale. She thought Greenwich would be closest to you in NYC. She did check with her friend that works at Smilow Cancer Center and she recommended Dr. Beverly Drucker. You can look her up for info.

I hope you are able to find the care you desire wherever you decide to go. I wish you the best of luck!

TammyCross profile image
TammyCross

I will look up Beverly Drucker. Thank you. -- I am now in Massachusetts, and there are advertisements for Dana Farber/Brigham Women's (is that the right name) for treating all sorts of cancers. It looks tempting. I should have arranged to go there while I am in MA, but too late.

Greenwich would be a breeze for me! I am out in Westchester often, and it is 15 minutes to Greenwich Hospital. We used it whenever we could. Drucker, I assume, is in New Haven only. -- Well, will look it up.

Thanks for asking!

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