Radiation options and side effects for stage 3 endometrial cancer adenicarcinoma

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  • Dak82
    Dak82 Member Posts: 109 Member
    edited January 2021 #22
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    HDR brachytherapy almost done

    I have only 3 sessions of brachytherapy scheduled with 2 complete and final one on Tuesday. Since Huntsman is part of the University of Utah health centers it means lots of students are present for procedures. That was pointed out to me before I started. I am retired USAF and was wearing an AF beanie to warm my newly shaved head at my first session which generated much discussion with the resident. He is a Captain in the USAF but new to radiation oncology I guess. Since he had never attached the source cable before the nurse let him practice. It really is about touch! So far so good on everything. 3d round of chemo in a week. Got clearance to resume all activities from gyn-onc so back on my bike (indoors only) and adding jogs to walks. Also seeing PT for abdominal exercises. Thanks to everyone here for relaying their experiences--I was staged as IIIC2 endometrial adenocarcinoma, grade 3, with extensive LVSI.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited January 2021 #23
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    You are getting there!

    I have been wondering how you were doing.  

    we spent 3+ years assigned to Hill AFB and  I have wonderful memories of Utah.  it was the birthplace of my daughter. I call her the bee hive baby. 

  • tinacap77
    tinacap77 Member Posts: 27 Member
    edited January 2021 #24
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    Kaleena said:

    Hi Tina:

    Hi Tina:

    Stage 3A, Grade 2 Endometrial Adenocarcinoma.  They couldn't find a primary.  Thought it might be MMM but went with Endometrial.   It was found in my uterus, cervix and left ovary.  They treated it though as Ovarian Cancer.

    Treatment for stage 3 endocarcinoma

    Hi: did you do radiation? If so what are side effects snd how long ago?

    Thank you

    Tina

  • RedHead1
    RedHead1 Member Posts: 6
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    Maxster said:

    Third opinion?

    I had Stage IIIC UPSC, a very aggressive cancer which had penetrated 90% of my myometrium.  The standard of care advice I received from Memorial Sloan Kettering and Univ of WI Madison was 6 rounds of taxol and carboplatin with 2-4 rounds of internal radiation between chemo infusions.  The advice was based on the fact that my cancer likes to move to the abdomen and lungs so chemo had to be the first line of treatment and uninterrupted and full strength.  My local gyn-onc was recommenging sandwich therapy of three chemo, 30 pelvic radiation, three chemo.  I went with Memorial's advice because quite frankly they are the best in my opinion.  MD Anderson might disagree.  Memorial advised I find a very experienced radiation oncologist and suggested UW-Madison which is where I went as I live in Wisconsin.  The radiation oncologist believed she saw a missed lymph node and was concerned that not all the cancer had been removed. I was just starting chemo at this point.  She suggested full pelvic 25 rounds.  I agonized as I was terrified of radiation.  Three internal seemed much preferrable.  However, I went back to Memorial about this and they felt it might be overkill but did not oppose it.  So I went with the 25 rounds.  I did have diarrhea--really just loose stools-- but nothing I could not handle.  I would say the worst of it came after the radiation ended and I had a bad few days about 4 weeks later.  I guess this is not unusual.  Since then I have been fine.  I finished radiation in April of 2020.  As you can see, reactions and opinions really vary.  If you are uncertain I would seek a third opinion or go back to your original doctor and discuss.  I like it when they base their decision on current research so you might ask about that.  I am not sure there is one best answer for any of us.  In the end I think we do what we believe is best of us.  My best to you!

    Radiation to abdomen

    I would like to make contact with someone who has had radiation to the abdomen.  I would like your comment/thoughts etc on side effects or if you had any

  • RedHead1
    RedHead1 Member Posts: 6
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    Radiation to abdomen

    I had chemo, surgery and then radiation (25) treatments to my abdome.  I am still feeling the effects.  Anyone else?  people's comments are oh I thought radiation was easier than chemo.  Comments

  • Forherself
    Forherself Member Posts: 999 Member
    edited September 2021 #27
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    RedHead1 said:

    Radiation to abdomen

    I would like to make contact with someone who has had radiation to the abdomen.  I would like your comment/thoughts etc on side effects or if you had any

    Hi there

    You might get more replies if you create a new post.  I'm sure there are lots of ladies who can answer your question.

     

  • egrrl
    egrrl Member Posts: 16 Member
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    I was fortunate to find your post before starting either chemo or radiation (both have been recommended). My first step is a second opinion, but the Feinberg/Northwestern study is certainly an eye-opener. I hope this finds you well. Thanks so much for your post.

    EG

  • cmb
    cmb Member Posts: 1,001 Member
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    As I mentioned in my earlier post on this topic, both my medical oncologist and gynecological oncologist urged me to have external radiation to prevent a recurrence to the pelvic area, although both told me it wasn’t proven to prevent a recurrence elsewhere or improve survival. That was before the Feinberg/Northwestern study, which just confirmed what my doctors had already told me a couple of years before.

    I had a later stage, aggressive form of cancer so I made the decision to have radiation. Whether it has helped me stay NED for almost five years I don’t know, but I haven’t had any long-term effects from radiation (although I do have mild neuropathy from chemo and lymphedema from lymph nodes removed during surgery).

    I don’t know what my decision about radiation would have been if I had had the more common endometrial cancer type discussed in the Feinberg/Northwestern study versus the aggressive uterine carcinosarcoma that I did have. Perhaps my doctors would have been more neutral about radiation in that instance.

    To do radiation or not is a tough one for most women. 

  • MoeKay
    MoeKay Member Posts: 481 Member
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    EG,

    Here's a link to an abstract of an October 2020 study published in the journal Gynecologic Oncology entitled, "Adjuvant radiation followed by chemotherapy is associated with improved overall survival in endometrial cancer." https://pubmed.ncbi.nlm.nih.gov/32811681/

    You may also want to discuss this study with your treatment team to see what, if any, bearing it might have on your case.

    Good luck and good health!




  • egrrl
    egrrl Member Posts: 16 Member
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    This is so helpful, MoeKay! I've printed it out and added it to my research folder.

    Thank you so much.

    EG

  • FaithHopeLoveSurvive
    FaithHopeLoveSurvive Member Posts: 2 *
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    Hello Im new here and seriously so scared because in 2 days Im going to get my first intravaginal radiation , 1 of5,a week ago I finished my 6 round of chemo for stage 3 endometrial cancer. I should add that I also had full hysterectomy.Please please let me know what to expect , how painful is it and what to expect later on. Thank you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Hi FaithHopeLoveSurvive, please try to take a breath and know that you are welcome here.

    I had both external and brachy (internal) radiation. Mine was 'sandwiched' in between chemo, but it is still performed the same. I found it not to be painful, just not something I wanted to do, so I understand your anxiety. It is the fear of the unknown that I find the hardest. I would hope your radiologist explained this to you, but I found that lacking in my treatment years ago.

    They insert a cylinder, it really isn't all that painful, and you just lay there and wait for it to be done. As it was explained to me, it depends on how "strong" the radiation is that a physicist determines how long it has to remain there, 10-15 min, and then you can go.

    Brachytherapy can cause vaginal stenosis so you will want to use a dilator after it is completed. While they resemble hard, plastic candlestick like items, they will make future pelvic exams and sex more comfortable. They will tell you three times a week for 10 min, but one lovely lady had said years ago to do it everyday, and while a drag, I realized I was so fortunate to have the opportunity. I am not going to lie, I had challenges with them and that is why I would recommend everyday, but as the years go by it does get easier.

    I can recall everything clearly - from dx through all the tx. I only wish I had found this site before I had finished all the tx as the individuals here have been very supportive and informative.

    Hugs dear one. You can do this.

  • FaithHopeLoveSurvive
    FaithHopeLoveSurvive Member Posts: 2 *
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    This helps , thank you so much ! I'm trying not to think about it and be positive but my anxiety is stronger right now haha.Yes my dr's explained everything to me quite well, got a glimpse of the radiation room and of course the "giant tampon" lol seriously. As much as I wanna trust them when it comes to what to expect and afterwards well... I trust women who went or go through what Im going through ,their testimonials , one can learn a lot, prepare oneself . Wish I found CSN so much earlier.

  • zsazsa1
    zsazsa1 Member Posts: 566 Member
    edited May 2023 #35
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    Yes, CSN's info is incredibly valuable. What I found on here helped me tremendously. I hope my postings have helped others.