Decision about radiation

Options
sarimgh
sarimgh Member Posts: 5 Member

Greetings -

I reached a milestone yesterday, completing my 6th and hopefully final round of chemo (Yay for Carbo/Paxel). Tolerated it reasonably well, and have started Keytruda as continuation treatment.

But I'm facing a dilemma about radiation. My gyn-onc and radiation onc, both wonderful clinicians that I trust fully, are debating about whether vaginal radiation (brachytherapy) would actually be over-treatment, since I'm going to be on Keytruda. They've put the decision in my hands after carefully walking me through the side effects, what to expect, recurrence rates, etc.

This entire time, I've been terrified of radiation, even more than chemo. I fear that my attitude will affect how I respond physically, if I choose to do it. Whereas with chemo, I made friends with it and imagined it as a magic elixir running through my veins.

If I elect not to do radiation, the main question my rad onc asked me to consider is, "if you do end up with a local recurrence, will you be blaming yourself for not doing everything you could when you had the chance?" But if I get radiation and have chronic side effects, I'll certainly be just as upset with myself.

Would value any insights about your radiation experiences, and how you made decisions when presented with similar tradeoffs. Thank you in advance!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,397 Member
    Options

    sarimgh, can you give us a little more information? What type of cancer did you have and what was the stage? Have they provided you any data on clinical trial results of radiation with Keytruda? How many radiation treatments are they recommending?

    Personally, I never wrapped my head around radiation, so I understand how you are feeling.

    Ultimately it is always going to be our decision, and while we have to do what is best for us, we all 'wonder'.

    Please come back and share what you are comfortable with.

  • sarimgh
    sarimgh Member Posts: 5 Member
    Options

    Ah yes, I definitely left out some key details, didn't I? :-) Stage IIIC Endometrial Cancer. There's an ongoing trial of Keytruda + radiation but the results are years away. The primary guidepost my team is using is the NRG-GY018 trial of Pembrolizumab, aka Keytruda in addition to carbo/paxel. The interim results were presented recently and look really promising.

    If I opt for radiation, it will be a relatively short course, 1/week for 3 weeks, 15 minutes of exposure, but even that low-ish level confers risks of urinary, GI, and gyn side effects I'd rather not experience.

    Your point that there will always be some residual "what ifs" and revisiting of different decisions is an excellent one! Prior to my diagnosis, I spent considerable time attributing my symptoms to perimenopause, post-COVID effects, anything but cancer, so the shock of late-stage disease was really something.

    Thanks so much for your response, and the opportunity to clarify.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    Options

    Welcome sarimgh,

    I had UPSC, 1a, and opted for 3 brachytherapy because UPSC can be so aggressive even at early stages. It was a very hard decision for me but I don't regret it.

    We are in a new world now since I was dx in 2018, with Keytruda being added to the protocols, genomic and genetic testing is common and new trials. I think that makes the decision tougher because of the lack of longer term history in recurrences using Keytruda.

    I had all three brachytherapy within 7 days, my initial side effects were as expected, and mild. I have not recurred. I believe that those that suffer with longer term side effects had whole pelvic radiation, delivered everyday for 30 sessions? (someone please chime in if I am remembering incorrectly?)

    There is no one right answer as we all have to measure our risk of recurrence against living with intractable long term side effects. My reasoning is similar to your doctors, I wanted to throw everything I could at the beast in order to help my chances to survive. Others have chosen not to have radiation and that is ok, too. Deciding to have brachytherapy with a 1a cancer to reduce odds of recurrence is not the same as someone with a III3c dx. Your age, grade of your cancer can also be factors. (If you are reading any of our stories about radiation, please note how old the comments are as treatments have evolved even since I was dx)

    Good luck to you and let us know what you decide.

    xxoo

    Denise

  • Forherself
    Forherself Member Posts: 989 Member
    Options

    sarimgh you have a very good question. One of the things I did not realize about cancer treatment is that there are few 100% answers for treatment. Our reactions to treatment seem to depend on our mutations. Have you had genetic testing done on your cancer cells?. They do know which mutations make it more likely for you to recur. There are articles that divide endometrial cancer by mutation and list the recurrence rates. Your stage is higher. Will you be glad you didn't have brachytherapy if you recur? Hope for the best but plan for the worst. On the other hand if the treatment causes damage, you have to accept that risk. Ask your doctors what they would do if they were sitting in your chair. That helps too. They might not want to tell you what to do, but they can tell you what they would do if they had the same diagnosis.

  • MoeKay
    MoeKay Member Posts: 481 Member
    Options

    Hi sarimgh,

    I found this study entitled, "Combination Radiation and Immunotherapy in Gynecologic Malignancies--a Comprehensive Review." Here's a link to the full text of the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8797685/ In case something in this study adds any useful information to what your doctors have already discussed with you, you might want to have a follow-up discussion with them. Since this study was published in 2021, one thing I might do if I were in your situation would be to contact the corresponding author of the study and see if he has any more recent information he could share with you since the publication of this study. I know any time I've contacted corresponding authors in the past, they've always been very helpful.

    I did not read this study in its entirety, but one sentence in the Abstract caught my eye. It states, "Mounting basic science and translational research suggests that immunotherapy and radiation may act synergistically with the potential to improve clinical outcomes across multiple disease sites relative to monotherapy with either radiation or immunotherapy alone."

    In my case, my decision was really a non-decision. I was treated in 1999, before chemotherapy was used for my stage endometrial cancer, and WAY before immunotherapy appeared on the horizon. My gyn-onc and rad-onc both agreed I needed radiation due to my risk factors for recurrence. They did initially have a disagreement about what type of radiation I needed, with my gyn-onc saying I needed both internal and external, while my rad-onc thought I only needed external. They conferred, and in the end, my gyn-onc won the argument. My risk factors for recurrence were a tumor arising in the lower uterine segment, a deeply invasive tumor (approximately 80% myometrial invasion), extensive LVSI, and a large grade 2 tumor (approximately 4 cm.).

    Wishing you good luck and good health!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,397 Member
    Options

    Can I just start by saying how much I love you all! The support shown by everyone to everyone is just so wonderful.

    While I had both external (25) and internal/brachy (3) radiation I am one of the lucky ones with few side effects. I think part of the reason is my external had so few long-term issues was it was IMRT, Intensity-modulated radiation therapy.

    And just so you know going in, brachy requires the use of dialators later to prevent vaginal stenosis. It doesn't hurt, just more of a pain to keep up with. The good news on that is as years go by it is required less. I still get 'pink' on them and have run to verify it was nothing, but between they radiation making the tissue thin and they added dryness from menopause it still makes me ask.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    Options

    I do have vaginal atrophy but they assume I probably would have had it regardless of the brachy due to my age at dx, 15 years post menopause and the fact that I (most of us, actually) had a hysterectomy, and a BSO, (tubes and ovaries removed). So the issue for me is more of a total lack of estrogen and age at dx. Those with Type I tumors that are estrogen dependent cannot have the estrogen cream that was finally prescribed to me. I had pre-existing stress incontinence which was made worse by no estrogen, and the fact that pelvic floor exercises are not as effective with irradiated tissues. While the brachytherapy certainly affected these tissues, for me the main issues of the vaginal atrophy are caused by a lack of estrogen and age. I did see a urogynecologist for the stress incontinence and had pelvic floor therapy. I had a minor procedure done last summer to help with the incontinence and it has worked very well so far.

  • sarimgh
    sarimgh Member Posts: 5 Member
    Options

    Oh my goodness, this community is amazing. Thank you all for your thoughtful and caring responses and link to the Review article, which I'm digesting like a hungry...what? Caterpillar? Shark? Patient? :-)

    I notified my rad onc team that I will defer brachytherapy for now, even though it was definitely a low dose, short-term treatment, and they were prepared to help me manage stenosis and other side effects. They were great and answered questions similar to those you posed (i.e., "What would you advise your best friend, or do in my situation?")

    I will be attending the Society of Gynecologic Oncology's annual meeting later this month to hear the very latest on the trial that studied chemo with and without Keytruda, and my gyn onc indicates that the results will support my decision to go with Keytruda and forgo radiation.

    There are some remarkable treatment advances thanks to molecular profiling of endometrial cancer (h/t, as one of you lovely souls mentioned this as well!). So hopefully, decisions like this will become increasingly straightforward.

    My deep and heartfelt thanks!

  • Frances081920
    Frances081920 Member Posts: 37 Member
    Options

    I had vaginal brachytherapy for UPSC, it was much easier than the chemo, I initially had a little diarrhea and urinary incontinence. The diarrhea resolved without treatment, and I started a routine of Kegel exercises and the urinary incontinence resolved. I am glad I did as my Radiation Oncologist and Gynecological Oncologist said that a vaginal is recurrence is the most common. I hope this helps.