New Endometrioid Adenocarcinoma dx 12/20/2016

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JGN1983
JGN1983 Member Posts: 2
edited March 2017 in Uterine/Endometrial Cancer #1

Hi,

I am 55 years old and had surgery on Jan 10, 2017 for a hysterectomy including cervix, tubes, and ovaries. The initial in office biopsy before surgery showed class 2.

Surgical pathology confimed class 2.  Other signficant findings were 2 tumors less than 2 cms in size, one at the top and one near the cervix. The report stated one slide showed focal point of cervical stroma, 2mm.  Classified as Stage II because of that finding. No lymph node involvement, no penetration to the myometrium, and pretty much the only finding making this stage II is the focal point of 2mm. I feel like it is not a black and white decision on what to do....if deep stromal penetration than rad makes sense to me but I feel like my finding seems only slightly more risky that stage I which stops at surgery alone for most cases.

Had an appointment with the rad onc and of course they recommend radiation.  I do not want the risks of vaginal brachytherapy and the affect it has on my vaginal tissue as well as risk for bowel and urinary function and am considering having post op checkups and stopping at surgery alone. The quality of life is more important to me that the length of my life.

Has anyone here had superficial cervical stroma involvement and if so why did you decide on rad or no rads?

Also, if you have finished VBT, how bad is the damage to the vaginal tissue? They mentioned needing the use of a dilator...what is that like and do you use that forever?

Also, what are the best treatment centers for endometrial cancer? I live in Northern California and would like a second opinion. However the current rad says I need to start VBT right away or I lose that option.

Thanks,

Jan

 

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited March 2017 #2
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    brachytherapy

    I wasn't to do any type of radiation but after I had completed my chemo, my gyne onc wanted me to have pelvic and brachytherapy.   My radiation/oncologist did not want me to have pelvic radiation due to how bad I scar and the radiation would not be of any benefit to me as it could cause extensive problems.  I did, however, have 3 brachytherapy treatments.   That was in 2006.   It wasn't until 2014 that I developed a blockage in my left ureter by my bladder which was caused by the radiation.   That was over 8 years.   I was 45 when diagnosed and treatment began.   My stage was Stage 3A, Grade 2.  Cancer found in my uterus, cervic and left ovary.   in 2010 I had a lymph node with microscopic cells but did not do treatment at that time - just surgery.

  • JGN1983
    JGN1983 Member Posts: 2
    #3
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    Thanks

    Thanks for sharing with me Kaleena. This is my first time to the site and everyone is so supportive and transparent as I read through a few threads.

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited March 2017 #4
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    hey there. as far as

    hey there. as far as treatment centers, i heard good thing about ucsf, ucla stanford, and university of washington. i would definitely go for several opinions before continuing with treatment. your doctors are recommending the "golden standard" for treatment so take it for what it's worth.

    i was originally staged as 1a low grade and stopped at surgery. my doctors were completely taken by surprise when i recurred two years later on my remaining ovary. so i had external radiation with concurrent chemo for 28 rounds. rough but doable. and since they have no idea why i recurred, i'm also finishing up on 4 rounds of chemo just in case.

    what they're proposing to you is a bit more invasive than what i had because of the internal prep involved but it is also very doable.

    for my treatment, they pointed the beams right at my vagina as it is a very common site for recurrence. i have always felt i cared more about quality over quantity too. the risk of vaginal stenosis is real and extends throughout your life but it can be countered with dilators and/or regular sexual activities. just because you have radiation doesn't mean you will always have permanent vaginal damage. you could also have bladder issues down the line but neither will necessarily cut your life short! and yes, radiation therapy also increases the chance of a secondary cancer but it's rare. 

    there's lots to consider for sure but do keep in mind that you're not a statistic. you could very well get through treatment and move on with your life. 

    take care. and good luck.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #5
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    JGN

    I had brachytherapy for stage 1A grade 3 serous.  I also had the standard chemo for UPSC.

    It is a hard decision to make. There is a thread called 'Let's talk about radiation'.  Lots of discussion on whether to do it or not and the experiences several of us had. I think it may help you.

    I had my last brachy on 1/28/16 - 13+ months ago. So far, so good. I use the dialator once per week for 10 minutes and have sex once per week. While I don't look forward to using the dialator, it really isn't that big of a deal. Sometimes I have to talk myself into it but not because it is painful - I just don't want to do it. I have had 4 check ups since the VBT and my tissue remains in good shape. I haven't had any functional issues due to the radiation. Thus, my so far, so good comment. My radiology oncologist said that we do sign up to do this for the rest of our lives but he has seen women stop after 3 years and stay OK.

    For me, I'm glad I did it. At least I know I used all tools available to dance with Mr. Ned. The rest is out of my hands.

    We all have to make the best decision for ourselves. Getting a second opinion my be helpful to get you into your comfort zone in making yours.

    I'm glad you found us and so sorry you needed to. Please come back with any and all questions. Someone most likely will have an answer for you. Please let us know how you are doing.

    Love and Hugs,

    Cindi

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
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    UC Davis

    I had my treatment at UC Davis in Sacramento.  Good group of gynecologic oncologists.  It is an academic medical center, so if you're in the Sacramento area or north, I highly recommend them.  They interact with all of the major players and are major players themselves.  If Bay Area, UCSF or Stanford.  My gyn/onc was Dr. Gary Leiserowitz. 

    Suzanne

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