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Second Opinions Are Critical - Even on a Pathology Report

derMaus
derMaus Member Posts: 558

A week ago today, I met with my oncologist to review the path report from my November 28 radical hysterectomy. At that time I was told I had mixed Grade 3 undifferentiated and neuroendocrine cancers. I posted about the neuroendocrine part the same day but, like me, virtually no one had heard about it as it only occurs in 150-200 women in the US each year. The oncologist was calling around, surveying her colleagues about what chemo regimen to start -- one directed at the 'regular' or one at the neuroendocrine. If possible, my panic and fear had ramped up further with this new twist. Long story short, a friend urged me to request a second pathology report, not to be confused with a second treatment opinion. I did so, and spent all day Thursday and part of Friday picking up slides from my hospital and having them couriered to Cedars-Siani for their own review. I was at the onc's again yesterday, having the last of my staples out, when the call came in from Cedars: their do not believe it's neuroendocrine, rather, it's endometrial cancer with neuroendocrine features. Even the onc was surprised about that [which begs the question as to why she didn't make the request herself, but I digress]. With the course of one phone call, my diagnosis and treatment plan changed and I've been given a bit more hope. I've requested a third opinion as a tie-breaker but am pretty confident that the 3 pathologists from Cedars knew what they're doing as they're specialized, vs. our local 'generic' hospital pathology lab.

Others have posted here about the need for second, or even third, opinions. I understood that to apply to doctors but never thought about a pathology report. I wanted to share that experience with you, and hope someone may find it helpful. I certainly bless my friend for suggesting it to me. 

Comments

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    This is good

    a MUCH more hopeful diagnosis.  I'm pleased for you.  Give that friend a big hug!

  • Nellasing
    Nellasing Member Posts: 528
    That is awesome information!

    Thank you for sharing this- you just never know who this can help going forward.  Thank goodness for that friend.  Someone's watching out for you Innocent

    Prayers and (((Hugs))) going forward

  • Kvdyson
    Kvdyson Member Posts: 789
    edited December 2016 #4
    derMaus, I completely agree

    derMaus, I completely agree and had a very similar experience with my diagnosis. The first pathologist determined that it was uterine carcinosarcoma. It is a fairly rare diagnosis so I decided to get a second opinion.

    The second opinion was from a large cancer center (Moffitt in Tampa) and they determined that is was high-grade endometrial stromal sarcoma. So, just like you, I got a third from one of the top gynecologic pathologists in the US (Dr. Robert Young at Harvard Medical School / Massachusetts General Hospital) and his determination was that it was close between the two but that he was leaning towards uterine carcinosarcoma.

    Because of the diagnosis controversy, my treatment was delayed for a few weeks. I don't know if that has made a difference in the long run but it was important to me to wait to start anything because if Moffitt had been right, then the treatment would have been much different. 

    I hope that your third opinion provides you with some much needed confidence in your treatment moving forward.

  • janaes
    janaes Member Posts: 799
    edited December 2016 #5
    I am so glad you are fimding

    I am so glad you are fimding answers that you feel good about.  That is so important.  I almost did a second opinion on my pathology report but found the answers i felt good about before then.  I did have to talk to three different doctors and have a tumor board of I think it was 7 or eight doctors before I could proceed.  One doctor told me i needed no chemo therapy at all and others were telling me my cancer was carsinasarcoma which deffinetly needed chemo.  I am so glad i got the answers I needed before I went forword or I would always wonder.

  • Kaleena
    Kaleena Member Posts: 2,059
    edited December 2016 #6
    Yes!!!!

    So glad you got that second opinion! 

    Kathy

  • MAbound
    MAbound Member Posts: 1,156 **
    edited December 2016 #7
    Pathology

    My pathology went to three different labs before things were finalized to my oncologist's satisfaction. One of the things I really like about him is his thoroughness, but it never hurts to be on top of things yourself as no one will care about the results as much as you do!