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Should we find a new doctor?

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  • Should we find a new doctor?

    Hello,
    This is my first post and I want to say how much I appreciate this forum. What a wealth of information and support!
    My brother is 32 years old and was diagnosed last October with TC. He had surgery right away and they removed a large nonseminoma tumor. We were all anxious of course during this process. My family has had it's share of tragedy as we lost my other brother to a car accident when he was 21.
    The waybI deal with things is to try to learn as much as I can. I know google isn't the best source of information but I did a lot of digging and reading of case studies. After my brother's surgery I asked to see his report.
    It stated that the tumor was 96% embryonal carcinoma and there was evidence of LVI.
    Immediately a few red flags went up based on what I had read.
    My brother had follow up bloodwork and scans in December and everything looked great. Based on that the Dr. gave him the choice for surveillance and said see you in April. All of us were so relieved and celebrated.
    Fast forward to last week's follow up appointment.... Tumor markers were up and evidence of cancer spread to his lymph nodes! He was upgraded to stage 2b. Of course the news shattered my entire family. One of the first emotions I felt was anger. I asked my brother if his doctor had recommended chemo after his initial surgery as a precaution. Based on what I read in his report, that should have been the recommended and strongly suggested course. My brother said the doctor mentioned it but it was just presented as an option but that he didn't think it was necessary. I also thought the 4 month time between surveillance check ups was too long.
    Anyway, here we are....my brother got is port put in today for 4 rounds of EP chemo. Needless to say he is terrified and sad.
    I am going to do everything I can to support him through this.
    Do you think, moving forward, we should seek a new doctor?
    Thank you

  • #2
    Hello, I am so sorry your brother and your family are going throught his ordeal. I understand your frustration, I've been there. I would question all decisions my brother's doctor made every step of the way, although he wasn't always pleased about it. As to your question about timing and course of action, unfortunately I'm not equipped to answer, as I do not know about details of surveillance decisions. I think the most important thing is that now your brother will be getting the chemo he needs. I'm thinking that possibly switching doctors at this point could potentially delay his treatment, I'm not sure. However, getting a second opinion could ease your minds some, although I'm guessing would not change the course of action at this point.
    Maybe you could email or call to get a second option without switching doctors. I contacted serval doctors during my brother's treatment and got some responses. Although it was mostly during clinical trial phase. Which area of the world are you located in?
    Keeping you in my thoughts,
    Monika
    sigpic
    Brother Lucas-21 yrs old -Diagnosed March 2010- bHC= 500,000
    4 x BEP (3rd cylce bHCG= 100, 4th cycle bHCG= 500)
    Orchiectomy- June 14th
    bHCG = 4,000 - June 21st
    Taxol +Ifosfamid - June 26th
    bHCG= 10,000 - July 9th
    Stem Cell Collection- July 15th bHCH= 5,000
    bHCG= 7,000- July 19th
    High Dose Chemo Start- July 21st
    bHCG= 700- Aug 7th
    bHCG= 130- Aug 12th
    High Dose Chemo 2nd Round- Aug 14th
    bHCG= 64- Aug 19th
    bHCG= 1,400- Sept 24th
    Clinical Trail- Oct
    bHCG= 200,000- Nov 13th

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    • #3
      Sounds like his doc is following NCCN guidelines pretty well. With embryonal and LVI there is a 50/50 chance it has spread. That should have been communicated, but still, some guys decide to go with surveillance & are fine, As was said, swoitching docs probably not necessary as the treatment going forward won;t change.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #4
        Thank you so much for your responses. I really appreciate it. I think the initial shock of the cancer returning had me looking for blame but at this point, the treatment has begun and hopefully it will lead to a good result.

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        • #5
          The success is very high these days, rest easy
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

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