Need guidance on adjuvant therapy

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SF73
SF73 Member Posts: 317 Member
in Uterine/Endometrial Cancer #1

Hello everyone,

I am 44 years old. Always had very regular periods. One natural childbirth. Always knew that I had two fibroids but thought they would resolve themselves once I am in menopause. In May, when I visited my gynecologist due to abnormal bleeding, I had a hysteroscopy where some polyps were found and removed. Pathology report came back with some cancer cells. So I was referred to a Gynecological Oncologist and in late June I had a hysterectomy (LAVH). My uterus, cervix, and fallopian tubes were removed but we kept both ovaries since they looked healthy and no lymph node was removed. Apparently cancer seemed contained and the lymph nodes looked OK. I remember talking about my fear of lymphedema at one point before the surgery. I would always wonder if in some way I affected my doctor's thinking and led me to have an incomplete staging. The pathology report came back with Stage 2 Grade 2 Endometrial Cancer. Superficial invasion of uterus and the cervix. Nothing on the fallopian tubes. I also had positive pelvic wash. But my doctor ensured me that it is not a conclusive thing. I also found some papers suggesting that positive pelvic wash does not have any diagnostic value for endometrial cancer (it is valuable apparently for ovarian cancer.

2.5 months later I started having persistent pain in my ovaries and persistent low grade fever. Ultrasound and then a CT Scan confirmed that I have a 6 cm solid mass attached to my right ovary. Yesterday I had a second surgery. This time my ovaries, the mass (in its entirety no spillage), my appendix, and omentum (probably all of it) were removed. This was also a laparoscopic surgery. I am already recovering well. My oncologist mentioned that as an adjuvant therapy he is going to recommend chemotherapy. But first needs to see the pathology report to see if this is a second primary cancer (ovarian cancer) or the recurrence of the first uterine cancer.

It sounds as if recurrence of the uterine cancer on ovary - especially within 3 months - is a rare event. I guess having both uterine and ovarian cancer would also be a rare thing. So I wanted to see if anyone has similar diagnoses.

I have tons of questions about adjuvant chemotherapy. Does the standard/typical pathology report also has some reporting on what type of anticancer drug the tumor would respond to? Is that done through biomarkers or actual gene expression? My surgeries were done at another facility but my insurance is accepted at Stanford Women's Cancer Center. Do they have a good reputation? When would be the best time to reach out to them? Now? Or after I have the pathology report? In addition to chemotherapy, would I benefit from Metformin? 

Hope everyone is doing well. Look forward to exchanging info here and celebrate each other's recovery and support each other at our low points. Isnt internet a wonderful thing?

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  • bluesmama
    bluesmama Member Posts: 125 Member
    #2
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    Hey there

    I'll PM you. We're not exactly the same but similar in some ways.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #3
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    Welcome SF73

    Just want to say you've come to a great place for support and good solid information from sisters who have been there in one way or another!  I don't have any advice for you but I know that bluesmama already reached out and I'm sure there will be others along soon.  Keep us posted and let us know how you are doing.  (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 789
    edited October 2017 #4
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    SF73, so sorry to read what

    SF73, so sorry to read what you've been through. In my experience, pathology reports do not include treatment recommendations. You can go to the NCCN to find the "standard of care" treatment guidelines for ovarian and/or uterine neoplasms (cancers). Here is a link: https://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site . They make you set-up a user name and pw to get to the guides but it's free and can be very helpful as you begin to research your options with your medical team.

    For me, chemotherapy was not too bad. It was certainly less awful than what I was expecting from seeing portrayals on tv and in the movies. The medical community has done a very good job in trying to manage the negative side effects. Everyone is different, of course, so my experience may be different than yours but do try to remain hopeful and keep in mind that chemo can be a very effective treatment option. 

    Good luck and keep us updated on how you are doing. Kim

  • SF73
    SF73 Member Posts: 317 Member
    #5
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    Thank you for the warm welcome

    I hope to learn a lot from your experiences. bluesmama reached out to me and has already made a huge impact on what I will do next. I started a grand round case to get a second opinion from prestigious institutions and made an appointment to see medical oncologists from stanford women's cancer center. Going forward I am hoping to make better informed decisions. Will definitely keep everyone in the loop. My best wishes to anyone who is going through this disease. 

  • pinky104
    pinky104 Member Posts: 574 Member
    #6
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    SF73

    My cancer didn't exactly work the same way as yours.  I was initially diagnosed at stage IVb in 2010.  My UPSC was found in my uterus, both ovaries, my omentum, and my small intestine .  My GYN/onc thought I had ovarian cancer that had spread to my uterus, but the hospital's tumor board thought it started in the uterus and spread to the ovaries, so UPSC is what the doctors agreed upon for my diagnosis.  I had a recurrence this year where the cancer wrapped itself around my ascending colon and was alsofound in the paracolic gutter and peritoneum.  It was all from the original UPSC.  Both times I had surgery and chemo.  Both times, I went into remission. I finished my chemo on 9/20/17.  I'm about to find out what genomic testing recommends to avoid getting it again.  My oncologist thinks I should take a parp inhibitor called Zejula.  I hope to find out on Monday what my GYN/onc at the hospital where I had my surgery recommends.  He's the one who should have the genomic testing results.

  • SF73
    SF73 Member Posts: 317 Member
    #7
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    pinky104 said:

    SF73

    My cancer didn't exactly work the same way as yours.  I was initially diagnosed at stage IVb in 2010.  My UPSC was found in my uterus, both ovaries, my omentum, and my small intestine .  My GYN/onc thought I had ovarian cancer that had spread to my uterus, but the hospital's tumor board thought it started in the uterus and spread to the ovaries, so UPSC is what the doctors agreed upon for my diagnosis.  I had a recurrence this year where the cancer wrapped itself around my ascending colon and was alsofound in the paracolic gutter and peritoneum.  It was all from the original UPSC.  Both times I had surgery and chemo.  Both times, I went into remission. I finished my chemo on 9/20/17.  I'm about to find out what genomic testing recommends to avoid getting it again.  My oncologist thinks I should take a parp inhibitor called Zejula.  I hope to find out on Monday what my GYN/onc at the hospital where I had my surgery recommends.  He's the one who should have the genomic testing results.

    Thank you, Pinky

    What a journey you had, Pinky. So glad to hear that you went into remission both times and that you are done with your last chemotherapy. Please do share with us what the final recommendation is from genomic testing. Did you request the genomic testing or was it prescribed by the doctors after having multiple recurrences with the standard of care ?

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