How do I get a Second Opinion (cancer)?

Posted by slapshotmary @slapshotmary, Dec 27, 2021

I know this sounds stupid, but how do I get a second opinion? I need to have a second opinion on the treatment that has been offered to me. It just seems like my oncologist tells me good information and then just does it. I have to stop and ask for think about it. I just feel like I am being ambushed and he doesn't always answer my questions directly. He doesn't give me time to think in an appointment. Any advice or information will be greatly appreciated.

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Getting a second opinion can give you peace of mind. This blog post offers further reasons why it can be a good idea:
– Advice on Second Opinions https://connect.mayoclinic.org/champions/advice-on-second-opinions/

If you would like to seek a second opinion at Mayo Clinic, you can either self-refer or ask your oncologist to submit a referral. I think most of your questions about how to self refer are answered here in this set of Frequently Asked Questions https://www.mayoclinic.org/appointments/faq

To self refer, you can get started here: http://mayocl.in/1mtmR63

Let me know if you have questions that weren't answered with all the information I just posted. Happy to elaborate.

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I wished I had gotten a second opinion, for exactly all the reasons you gave. I likened my first year of cancer to being swept onto a fast moving train, and no way to slow it down or get off. Not getting a second opinion in the first year is one of my two biggest mistakes.
Do you live near Mayo, or another teaching hospital or cancer center?

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@colleenyoung

Getting a second opinion can give you peace of mind. This blog post offers further reasons why it can be a good idea:
– Advice on Second Opinions https://connect.mayoclinic.org/champions/advice-on-second-opinions/

If you would like to seek a second opinion at Mayo Clinic, you can either self-refer or ask your oncologist to submit a referral. I think most of your questions about how to self refer are answered here in this set of Frequently Asked Questions https://www.mayoclinic.org/appointments/faq

To self refer, you can get started here: http://mayocl.in/1mtmR63

Let me know if you have questions that weren't answered with all the information I just posted. Happy to elaborate.

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Thank you Colleen! I love your comments and all your guidance.

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OK. It's a lot easier to get second opinions now than it used to be. All throughout my treatment at a local hospital, the thought never occurred to me (mostly because I had an excellent surgeon on the team). Once the surgery, chemo and radiation therapy were over, it seemed to me that the oncologist (who is supposedly the hub in this wheel) was giving me a "cookie cutter" approach to what I consider the most important part of the treatment plan: hormone therapy for 5-10 years. Sure enough I was right. She was going to prescribe Tamoxifen for 5 years and call it a day (understand, I am a post-menopausal woman). I called up Dana Farber for a second opinion and they were more than happy to do so. They prescribed 2 years Tamoxifen and 3-8 years AI (or also the option of doing the AI right then). They also prescribed 3 yrs of Zometa. Sure enough, your instincts will always be correct, and my advice would be, never hesitate to follow them. I still go to DF every 2 years and do call my oncologist there for a second opinion if and when I feel the local people are not up with the latest and greatest.

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@mdr3

OK. It's a lot easier to get second opinions now than it used to be. All throughout my treatment at a local hospital, the thought never occurred to me (mostly because I had an excellent surgeon on the team). Once the surgery, chemo and radiation therapy were over, it seemed to me that the oncologist (who is supposedly the hub in this wheel) was giving me a "cookie cutter" approach to what I consider the most important part of the treatment plan: hormone therapy for 5-10 years. Sure enough I was right. She was going to prescribe Tamoxifen for 5 years and call it a day (understand, I am a post-menopausal woman). I called up Dana Farber for a second opinion and they were more than happy to do so. They prescribed 2 years Tamoxifen and 3-8 years AI (or also the option of doing the AI right then). They also prescribed 3 yrs of Zometa. Sure enough, your instincts will always be correct, and my advice would be, never hesitate to follow them. I still go to DF every 2 years and do call my oncologist there for a second opinion if and when I feel the local people are not up with the latest and greatest.

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Thank you so much for this. How did you know how to get that second opinion? Did you ask your oncologist or did you search out another doctor?

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@slapshotmary

Thank you so much for this. How did you know how to get that second opinion? Did you ask your oncologist or did you search out another doctor?

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Will pm you on the details

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I got 4 opinions! I just called up and made an appointment.

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@windyshores

I got 4 opinions! I just called up and made an appointment.

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Good for you! I wish I had gotten a second right away. I love how brave you are!

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@auntieoakley

Good for you! I wish I had gotten a second right away. I love how brave you are!

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My first oncologist had me at HER2+. I bought a wig and got ready for chemo when my 2nd one said equivocal then negative. Ditto the 3rd and they refused to retest. Two had me at grade 3, two had me at grade 2. My Oncotype was low but I was possibly high grade, highish ki67%, and lymphovascular invasion. First three told me they would not check anything any further.

Fourth one said "I don't blame you for being troubled" (so I knew I had found the right one) and retested HER2 but counted a lot more cells to make sure, and rechecked everything else. She left the decision on chemo up to me. With low Oncotype I declined. Knock on wood – this was all in 2015. I was told 1 in 5 radiologists would do radiation on me but all docs agreed best not to due to other health issues. So I only did an aromatase inhibitor after double mastectomy. That was the treatment that 3 others had recommended but my mind was at ease thanks to that kind 4th doctor.

If I had stuck with the first doctor I would have had chemo AND meds for HER2.

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@windyshores

My first oncologist had me at HER2+. I bought a wig and got ready for chemo when my 2nd one said equivocal then negative. Ditto the 3rd and they refused to retest. Two had me at grade 3, two had me at grade 2. My Oncotype was low but I was possibly high grade, highish ki67%, and lymphovascular invasion. First three told me they would not check anything any further.

Fourth one said "I don't blame you for being troubled" (so I knew I had found the right one) and retested HER2 but counted a lot more cells to make sure, and rechecked everything else. She left the decision on chemo up to me. With low Oncotype I declined. Knock on wood – this was all in 2015. I was told 1 in 5 radiologists would do radiation on me but all docs agreed best not to due to other health issues. So I only did an aromatase inhibitor after double mastectomy. That was the treatment that 3 others had recommended but my mind was at ease thanks to that kind 4th doctor.

If I had stuck with the first doctor I would have had chemo AND meds for HER2.

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Thank you for sharing your story. It reinforces that you have to self advocate. Wow, I'm glad you did that. I went with the first doctor as I went to a cancer center, but I'm very please up to this point. I plan to get a 2nd opinion.

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@windyshores

My first oncologist had me at HER2+. I bought a wig and got ready for chemo when my 2nd one said equivocal then negative. Ditto the 3rd and they refused to retest. Two had me at grade 3, two had me at grade 2. My Oncotype was low but I was possibly high grade, highish ki67%, and lymphovascular invasion. First three told me they would not check anything any further.

Fourth one said "I don't blame you for being troubled" (so I knew I had found the right one) and retested HER2 but counted a lot more cells to make sure, and rechecked everything else. She left the decision on chemo up to me. With low Oncotype I declined. Knock on wood – this was all in 2015. I was told 1 in 5 radiologists would do radiation on me but all docs agreed best not to due to other health issues. So I only did an aromatase inhibitor after double mastectomy. That was the treatment that 3 others had recommended but my mind was at ease thanks to that kind 4th doctor.

If I had stuck with the first doctor I would have had chemo AND meds for HER2.

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Some of those tests were not available when I was initially diagnosed. I can’t say that my story would have been wildly different but I still think I should have gotten a second opinion straight away. My mother used to always say, hindsight is always 20/20. I am ER+, PR-, HER2+. Grade 3, initial stage 2.

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@slapshotmary

Thank you Colleen! I love your comments and all your guidance.

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I got a second opinion at Mayo. They will check with your insurance to make sure things are covered. For my type of cancer, they offered other options for radiation than I was offered locally (Duluth). I had never gotten a second opinion about anything so it felt a little awkward. But it was worth it.

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