How much time do I have to get a second opinion?

Posted by alicejoan @alicejoan, Oct 10, 2022

Invasive lobular cancer
I am interested in a second opinion but I am concerned about how much time I have between diagnosis and scheduling surgery. Any time estimate that there won’t be progression?

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@joanly

It was very difficult for me as it is for everyone when I was told that I had breast cancer. I was quickly assigner a surgeon, radiology oncologist and a medical oncologist. After meeting them, I quickly learned that it should be up to me to choose my team. They weren’t bad, I think it was just a bad match. So, I got on health grades, read reviews, looked at our local (Siteman) cancer center and found it is the top 10 in the US! I thought I needed to check the Docs out and made a second opinion appointment with the breast surgeon! She was wonderful!! I can’t say enough great things about her! After that I met with the rad oncologist & med oncologist. I just can’t tell you how happy I am that I followed through and am thrilled with my new team!! And my surgery was only delayed for one week because of the change! It could have gone the other way and I might have stayed with the first team? My point is that I think you owe it to yourself to be happy and confident with your team of doctors. Even personalities matter. You have to be able to talk to them, be comfortable asking questions and feel that you are on the same wavelength with every one of them! It’s just too important. If there are any doubts, do something now rather than regret it later!!

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I was diagnosed with DCIS in August & was also assigned a surgeon, oncologist & radiology oncologist. Doctors get thrown at you so fast it makes your head spin. I had a lumpectomy in September. I have an appointment with a cardiologist due to family history of severe heart disease & the effects on the heart with different treatments & meds. I’m seeing him before deciding on any further treatments. I have also considered switching to Siteman since I’m not to thrilled with my oncologist. I had to request an Oconotype DX DCIS test. I wasn’t sure what dr ordered this so I asked all 3. During my initial visit with the oncologist she said it was radiology oncology that ordered the test. When I went to see radiology she was surprised & said it’s the oncologist that orders that. I feel like she begrudgingly ordered it due to my insistence. Several weeks ago I asked how long before results came & I’m still waiting on an answer!! I think there’s enough uncertainty in a cancer diagnoses & oncologist appointments aren’t cheap that I should have gotten an answer by now. I don’t need the added stress of an unresponsive oncologist since I’m going to need one for quite a while so I’m going to look for a 2nd opinion on radiation & a different oncologist IF I ever get the results from the Oconotype test. I think doctors sometimes forget that we are the customer!

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@rene1636 can you call the company (Exact Sciences, used to be Genomic Health but apparently it has changed) and get results sent to you? They will do this if doc has received the results. They can also explain the results. The cusotmer service reps are very knowledgeable.

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@alicejoan

Stage 11 because it is 3cm.

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Wow! Everyone here has so much helpful information for you. These are all amazing women with amazing stories. Mine is a cautionary tale. It never even occurred to me to get a second opinion. Looking back, I wished I had done that, I live in a rural area with two medical oncologist and at that time, only one surgeon. I was not given options or even a discussion about what I wanted. I wanted a bilateral mastectomy, this was the one thing I really wanted and voiced, they said we don’t do that anymore. I didn’t get it, I did everything they said, and I often say, I am still around to complain about it.
In hindsight I wish I had thought to get a second or third opinion.
How are you feeling about this now? Have you had a chance to step back yet from the initial shock and look at this from the perspective of what you want?
Do you live close to a large cancer center, or university hospital, those are often great places for a second opinion?

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@auntieoakley

Wow! Everyone here has so much helpful information for you. These are all amazing women with amazing stories. Mine is a cautionary tale. It never even occurred to me to get a second opinion. Looking back, I wished I had done that, I live in a rural area with two medical oncologist and at that time, only one surgeon. I was not given options or even a discussion about what I wanted. I wanted a bilateral mastectomy, this was the one thing I really wanted and voiced, they said we don’t do that anymore. I didn’t get it, I did everything they said, and I often say, I am still around to complain about it.
In hindsight I wish I had thought to get a second or third opinion.
How are you feeling about this now? Have you had a chance to step back yet from the initial shock and look at this from the perspective of what you want?
Do you live close to a large cancer center, or university hospital, those are often great places for a second opinion?

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Your comment is helpful.
I have an appointment for a second opinion from Dana Farber which is three hours from me.

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Thank you all for your helpful perspective. I am impressed with how responsive so many of you have been. I now have a second opinion appointment at Dana Farber before going ahead with surgery.

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@rene1636

I was diagnosed with DCIS in August & was also assigned a surgeon, oncologist & radiology oncologist. Doctors get thrown at you so fast it makes your head spin. I had a lumpectomy in September. I have an appointment with a cardiologist due to family history of severe heart disease & the effects on the heart with different treatments & meds. I’m seeing him before deciding on any further treatments. I have also considered switching to Siteman since I’m not to thrilled with my oncologist. I had to request an Oconotype DX DCIS test. I wasn’t sure what dr ordered this so I asked all 3. During my initial visit with the oncologist she said it was radiology oncology that ordered the test. When I went to see radiology she was surprised & said it’s the oncologist that orders that. I feel like she begrudgingly ordered it due to my insistence. Several weeks ago I asked how long before results came & I’m still waiting on an answer!! I think there’s enough uncertainty in a cancer diagnoses & oncologist appointments aren’t cheap that I should have gotten an answer by now. I don’t need the added stress of an unresponsive oncologist since I’m going to need one for quite a while so I’m going to look for a 2nd opinion on radiation & a different oncologist IF I ever get the results from the Oconotype test. I think doctors sometimes forget that we are the customer!

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You are so right about Drs being throes at you!! I couldn’t believe it! It was mainly the med oncologist and when I asked to see someone else in the office I was told that it was office policy that I couldn’t change! I explained that I was assigned to him and didn’t choose him in the first place. They Juliet repeated that it was office policy that no changes were allowed. That was my impetus to “get out of town” so to speak! I am so happy with my surgeon and rad oncologist at Siteman! I meet with my Siteman med oncologist on the 18th! I have heard great things about her. Just so glad I made the change. So much more confident and relaxed since I did!

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