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Thread: Precursor Ovarian Cancer

  1. #1
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    Precursor Ovarian Cancer

    Hello all. I'm looking for some insight into my diagnosis of precursor ovarian cancer. I was diagnosed with rectal cancer in February of last year. During surgery in June, my surgeon felt that my ovaries "didn't look right," and removed them along with my fallopian tubes. He also removed some strange cells from my peritoneum. Samples were sent to two labs and the results were discussed by the tumor board at my cancer center. They came to the conclusion that I had precursor ovarian cancer cells in my right ovary and the cells removed from my peritoneum. My oncologist wanted me to finish my rectal cancer treatment before we moved on with the ovarian cancer. I completed adjuvant chemotherapy in December and now have an appointment with a GYN oncologist next week. What does the first visit to a GYN oncologist entail? What types of questions should I ask? I went into my rectal cancer treatment blind, I want to be better prepared this time around.
    Last edited by aqx99; 01-07-2018 at 04:53 PM.
    Stage IIIB Rectal Cancer
    T3N1bM0
    2/21/17 Diagnosis, Age 39
    2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
    3/23/17 - 5/2/17 Chemoradiation, 28 treatments
    6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
    7/24/17 - 12/18/17 CapeOx, 6 Cycles
    7/24/17 Diagnosed w/ precursor ovarian cancer
    9/6/17 CA 125 11.1 U/mL
    11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
    12/5/17 CT showed NED
    12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
    1/23/18 Reversal

  2. #2
    Super Moderator Top User ddessert's Avatar
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    My area of specialty is genetics and cancer. With your history that you provided, I would ask whether you should/could be tested for an inherited mutation that might be causing these cancers at your age. You'd be asking for a consultation with a genetic counselor and of they don't have one, you can look for one in the USA using this search page.

    The findings might guide you towards more effective treatments and away from ones less effective.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  3. #3
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    I was tested for 28 genetic mutations after my rectal cancer diagnosis. I was tested for colorectal, breast (strong family history) and ovarian mutations. I was negative on all of them.
    Stage IIIB Rectal Cancer
    T3N1bM0
    2/21/17 Diagnosis, Age 39
    2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
    3/23/17 - 5/2/17 Chemoradiation, 28 treatments
    6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
    7/24/17 - 12/18/17 CapeOx, 6 Cycles
    7/24/17 Diagnosed w/ precursor ovarian cancer
    9/6/17 CA 125 11.1 U/mL
    11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
    12/5/17 CT showed NED
    12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
    1/23/18 Reversal

  4. #4
    Moderator Top User jorola's Avatar
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    Hi aqx99
    Here are some basic questions to ask:

    What type of ovarian cancer do I have?
    Has my cancer spread beyond the ovaries?
    What are the cell type, microscopic grade, and stage of my cancer? What does that mean?
    What treatments do you recommend for me? Why?
    What risks or side effects should I expect?
    What are the chances my cancer will recur (come back) with the treatments we have discussed?
    What should I do to be ready for treatment?
    Should I follow a special diet?
    Will I be able to have children after my treatment?
    What is my expected prognosis?
    Will I lose my hair?
    What do I tell my children, husband, parents, and other family members?

    Of course tailor it to your situation. Hope this helps.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  5. #5
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    Thank you for your reply. At this point a lot of those questions are not necessary, but I will make sure to write down the ones that are.
    Stage IIIB Rectal Cancer
    T3N1bM0
    2/21/17 Diagnosis, Age 39
    2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
    3/23/17 - 5/2/17 Chemoradiation, 28 treatments
    6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
    7/24/17 - 12/18/17 CapeOx, 6 Cycles
    7/24/17 Diagnosed w/ precursor ovarian cancer
    9/6/17 CA 125 11.1 U/mL
    11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
    12/5/17 CT showed NED
    12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
    1/23/18 Reversal

  6. #6
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    Good news! I saw the GYN oncologist today. After reviewing the surgical notes, CT scans and performing a pelvic exam, she feels that my rectal cancer treatment doubled as ovarian cancer treatment. She is going to present my case to the tumor board and, unless they decide differently, I will be monitored as a post-treatment patient. She will coordinate with my medical oncologist so tests and scans can be run for both of them at the same time.

  7. #7
    Moderator Top User jorola's Avatar
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    That is great news!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  8. #8
    Thanks for sharing this great news

 

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