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How long should I wait for an appt to get a second opinion?

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dana01
dana01 Member Posts: 3

Hi! I was diagnosed with high-grade DCIS by a local oncologist but I wanted a second opinion so I scheduled another appointment at a bigger cancer research center but the earliest appointment they have is one month and a week away. I’m nervous to wait that long since my local surgeon can do a lumpectomy this coming Monday. I’m looking for a second opinion on the lumpectomy because my surgeon said that it’s not necessary to do a Sentinel Lymph Node Biopsy and I’ve been reading that most of surgeons do that. My DCIS is 9mm and although the MRI show normal-looking lymph nodes that doesn’t mean there’s no invasion.

Could it become invasive if I wait that long? How long did you wait for an appointment?

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,160
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    The short answer is yes it could theoretically become invasive in five weeks but personally I don’t think there is any harm waiting to get a second opinion.

    I had breast cancer three times and could kick myself for not getting a second opinion on two of those diagnoses.

    There is no magic crystal ball here but if it helps I was diagnosed with DCIS and IDC last year and waited two months for surgery. It was my third time with breast cancer and I had a mastectomy in my remaining breast because of my high risk.

  • mavericksmom
    mavericksmom Member Posts: 1,160
    edited September 2023
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    I wrote the previous while waiting in the car for my husband to get blood tests and had to cut short what I wanted to say.

    Breast cancer is largely a "cook book" cancer, which means there are specific types and tried and true treatments for those times. Things only really get tricky in a very small percent of people.

    I too would opt for a lumpectomy in your case. Remember, they do pathology afterwards and will know if they got clean margins or not. They will also know if there were any invasive components. Remember, biopsies only take out a small portion of the tumor.

    As for no lymph nodes, that makes total sense to me. If your tumor is all DCIS, it wouldn't have spread anywhere, so the lymph nodes would be negative. I had IDC in 2003, and my breast surgeon removed 24 nodes from me because the sentinel node biopsy failed and that is what they did 20 years ago. I got instant lymphedema and my left arm is twice the size of my right arm. You want to avoid lymphedema if possible.

    If, after your lumpectomy, the pathology shows invasive cancer, they will go back and take some lymph nodes.

    Again, your choice, but you won't harm yourself with either choice.

  • muska
    muska Member Posts: 224
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    Hi Dana, i don’t think waiting is as important as having a good plan. You didn’t mention your age or other details about breasts and overall health that could matter.

    My surgery was ten years ago when I was 54. Small 9mm tumor in one breast, pre-surgery assessment stage 1. I opted for double mastectomy. During surgery that included sentinel node biopsy on one side, they discovered a second 3mm tumor, macromets to several auxiliary lymph nodes, extensive LCIS in the “healthy” breast. Everything was taken care of during that same surgery.

    If you prefer not to wait which I understand, maybe you can discuss “what if” questions with the surgeon you already have. Also, I would discuss post-surgery monitoring plan, including mammograms frequency, other scans maybe, etc.

    best of luck to you!

  • quietgirl
    quietgirl Member Posts: 165
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    If your fear is that it might be invasive then having surgery now is not going to alleviate that fear. DCIS by definition is not invasive (and yes some people but not all who find out with the lumpectomy that it’s not just DCIS) and I’m sure that there has been someone in the world in their wait for surgery who has gone from noninvasive to invasive because obviously there is a point that might happen BUT in general not what usually happens.

    So waiting for a second opinion probably isn’t going to change whether what is going on is purely DCIS or not. And while Sentinel Lymph Node biopsy is not routinely done with DCIS there are of course a number of factors that when DCIS falls into a high risk category when it is more likely SO getting a second opinion and having another medical professional evaluate the information available and letting you know what factors either put you in or out of the high risk category might give you so much more peace of mind so you can be more confident with whatever decisions need to be made.

    There is I think for many of us enough stress and what ifs and did they get what they should have after surgery as it, that waiting for a second opinion when you feel anxious about a decision being made is a wise choice even if we have a bit more stress during that wait for the opinion.

    sending positive thoughts your way for whatever you decide to do. There is no wrong choice if you decide not to wait that’s okay too. Just do what feels like the best choice for you in this sucky situation

  • dana01
    dana01 Member Posts: 3
    edited September 2023
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    Thank you so much for your comments @mavericksmom , @muska and @quietgirl! I really appreciate your personal stories and opinions! They have been very useful for me to make a decision. I think I’m going to wait for a second opinion. Also, I was able to schedule an earlier appointment which is two weeks away!

    Sending you hugs!

  • mavericksmom
    mavericksmom Member Posts: 1,160
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    dana01, woohoo for appointment in two weeks! It will go fast and I think will give you peace of mind. I am so glad our comments helped you! Please let us know how your appointment goes and how you are doing!

  • katg
    katg Member Posts: 210
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    Great news. Keep us posted.