Seeking Second Opinion

daffygirl
daffygirl Member Posts: 6
edited March 2014 in Uterine/Endometrial Cancer #1
Hi,
New to all of this. Was diagnosed with Uterine Cancer in Oct. Had Radical Hysterectory on 11/16/09 & still experiencing some pelvic pain, bladder discomfort and nausea.
Saw Surgeon/Oncologist last Tues. Pathology report showed Adenocarcinoma of endometrium, endometroid type with focal squamous metaplasia, well-differentiated, FIGO Grade I associated with complex endometrial hyperplasia with atypia and a portion of residual polyp .
FIGO Stage = 1B.
Told by Oncologist no further follow up - Concerned since no lymph nodes were biopsied due to weight issue. Told to "wait & see" if cancer returns. Recommended no radiation since he said it would do no good at this time. Need to follow up with a PAP every 3 months for 3 yrs & 2x yearly for 2 years.
Confused since he said he would try to biopsy the lymph nodes and would need additonal treatment. Don't know if I need radiation or not or wait & see as he suggested.
Does anyone know is this the treatment recommended or should I seek a second opinion and have radiation? I am very confused at this point and after 8 wks I think I should be feeling somewhat better.
Any suggestions from anyone would be appreciated.

Comments

  • Cecile Louise
    Cecile Louise Member Posts: 133
    #2
    Welcome
    Sorry you have to join this discussion board because of your diagnosis, but I'm glad you're here. I was diagnosed with 1b endo & UPSC, had 6 treatments of chemo, but no radiation, so I don't know whether or not you should have the radiation. However, I feel pretty strongly that a second opinion is in order. I am quite concerned by your onc's telling you "no further follow up" and "wait & see" if cancer returns...and his apparent contradictions concerning the lymph node biopsy & additional treatment. I, personally, would seek a second opinion, if for no other reason than to put my mind at ease. As far as your discomfort 8 weeks out from surgery, could some of your symptoms be associated with constipation? I was told this could be a big source of pain & nausea and my onc recommended that I take stool softeners regularly post-surgery.
    I wish you the best of luck in your journey and I hope you'll keep us updated as to your progress.

    Hugs,
    Cecile
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #3
    Cecile Louise said:

    Welcome
    Sorry you have to join this discussion board because of your diagnosis, but I'm glad you're here. I was diagnosed with 1b endo & UPSC, had 6 treatments of chemo, but no radiation, so I don't know whether or not you should have the radiation. However, I feel pretty strongly that a second opinion is in order. I am quite concerned by your onc's telling you "no further follow up" and "wait & see" if cancer returns...and his apparent contradictions concerning the lymph node biopsy & additional treatment. I, personally, would seek a second opinion, if for no other reason than to put my mind at ease. As far as your discomfort 8 weeks out from surgery, could some of your symptoms be associated with constipation? I was told this could be a big source of pain & nausea and my onc recommended that I take stool softeners regularly post-surgery.
    I wish you the best of luck in your journey and I hope you'll keep us updated as to your progress.

    Hugs,
    Cecile

    A 2nd opinion is not a bad thing - I got one (I was stage 3a serous - aggressive) but it didn't change the original recommendation. It might be good for your peace of mind to get this though.

    I definitely suggest you check the NCCN.com website and check the guidelines for your stage/grade of uterine cancer. This will give you a good idea of what the "norm" is for treatment.

    Some women here have chosen no treatment after surgery - remember chemo and radiation do a job on the body and the immune system. They are using diet and other alternative treatments. Continue to read the threads here. And I'm sure others will respond.

    Wishing you peace on this journey. Mary Ann
  • daffygirl
    daffygirl Member Posts: 6
    #4
    daisy366 said:

    A 2nd opinion is not a bad thing - I got one (I was stage 3a serous - aggressive) but it didn't change the original recommendation. It might be good for your peace of mind to get this though.

    I definitely suggest you check the NCCN.com website and check the guidelines for your stage/grade of uterine cancer. This will give you a good idea of what the "norm" is for treatment.

    Some women here have chosen no treatment after surgery - remember chemo and radiation do a job on the body and the immune system. They are using diet and other alternative treatments. Continue to read the threads here. And I'm sure others will respond.

    Wishing you peace on this journey. Mary Ann

    Second Opinion
    Hi Daisy,
    Thanks so much for the hook up on the guidelines. I appreciate your help.
    I know the radiation & chemo can do a number, but my family is insisting upon a second opinion.
    I think that if the Onc was a little more informative when I do ask questions than I would have more peace. It was just pounded into me that you do have cancer even after the surgery and what do I expect. I know that I am very fortunate to have only the Stage 1b.

    Wishing you a peaceful journey as well. Sharon
  • daffygirl
    daffygirl Member Posts: 6
    #5
    Cecile Louise said:

    Welcome
    Sorry you have to join this discussion board because of your diagnosis, but I'm glad you're here. I was diagnosed with 1b endo & UPSC, had 6 treatments of chemo, but no radiation, so I don't know whether or not you should have the radiation. However, I feel pretty strongly that a second opinion is in order. I am quite concerned by your onc's telling you "no further follow up" and "wait & see" if cancer returns...and his apparent contradictions concerning the lymph node biopsy & additional treatment. I, personally, would seek a second opinion, if for no other reason than to put my mind at ease. As far as your discomfort 8 weeks out from surgery, could some of your symptoms be associated with constipation? I was told this could be a big source of pain & nausea and my onc recommended that I take stool softeners regularly post-surgery.
    I wish you the best of luck in your journey and I hope you'll keep us updated as to your progress.

    Hugs,
    Cecile

    Thanks
    Cecile,
    Thanks for your advise. I appreciate your time in answering my inquiry.
    It truly has been an adventure dealing with not only the diagnosis but also the oncologist & his PA, and I have been in the health care field for over 25 years and would have never spoken to patients as I have been actually shouted at. According to the Onc, I owe him my life! It has been a hard recovery but I found that you need to hold strong.

    Peace on your journey & hugs back.
    Sharon
  • ljuls165
    ljuls165 Member Posts: 1
    #6
    Second Opinion
    My mom is currently battling uterine cancer. I can tell you from experience, a second opinion is NEVER a mistake. Seek out the most competent and advanced care in your area. Do not EVER settle when it comes to your treatment and care. If I could stress to you one thing it would be to gather knowledge, and understand what is going on with your body and treatment THOROUGHLY. If your questions are not answered in terms that you are comfortable with and completely understand, ask them again, and again if necessary, until you understand exactly what is happening and feel comfortable with the answers.
  • daffygirl
    daffygirl Member Posts: 6
    #7
    ljuls165 said:

    Second Opinion
    My mom is currently battling uterine cancer. I can tell you from experience, a second opinion is NEVER a mistake. Seek out the most competent and advanced care in your area. Do not EVER settle when it comes to your treatment and care. If I could stress to you one thing it would be to gather knowledge, and understand what is going on with your body and treatment THOROUGHLY. If your questions are not answered in terms that you are comfortable with and completely understand, ask them again, and again if necessary, until you understand exactly what is happening and feel comfortable with the answers.

    Thanks
    Thanks for your answer. I have taken all the advise given and will be seeing another oncologist for a second opinion.

    Happy thoughts to all.
    Shaorn

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