Long-term side effects of pelvic radiation - 6 months after treatment

Hi digbb,
I'm sorry you are having to deal with this. I have a few thoughts about your situation. 1) 26 treatments will do a lot of damage to your body and you need time to heal. Major surgery will take about 18 months to completely heal. But you may want to reach out to your doctor between now and your next appointment with this information. They may have something to help you deal with this or assure you this is normal healing
2) when your body has been under assault first by cancer and second by the treatment. Mental health is effected by health. When you are recovering you may experience mental health stress. Talk to your primary about meds. Medication doesn't have to be forever. Maybe even work with a therapist
Denise

I was diagnosed Stage 1A serous endometrial cacinoma; very aggressive! Nonetheless, two doctors proposed the "wait and see" approach while another proposed chemo with radiation (just 2 or 3 treatments). I didn't know what to do. Initially I planned to do chemo and radiation, then backed out last minute for fear of the long term effects versus benefit. Could be a mistake. It would have cut the chance of recurrence down to 15% (from 30%). I'm no expert, and I'm pretty new at this, but 25 radiation treatments seems like a lot, especially for stage 1a, but I'm thinking it cut your chance of recurrence down even more (like maybe to just 5%). For you, I would let that be my solace. You have NOT taken a step backwards. You've done everything possible to give yourself the best advantage moving forward. You'll have nothing to regret either way (unlike myself).

Thank you so much, @denisestlouie and @inquirer. I am making an appointment with an oncology social worker. The best I can explain, and it isn’t a very good explanation, is maybe I feel a bit like an imposter, or maybe have a bit of survivor’s guilt. I know with endometrial cancer, one of the things that you can hope for the most is for there to be a POLe mutation, and I have it. I have so much gratitude, but at the same time, part of me feels like I shouldn’t ever feel down, or have days when I worry about recurrence. Is this a thing - that a good prognosis makes you feel like you don’t deserve to feel down or overwhelmed by what the last year has brought? I don’t know. I am just so tired, but still so grateful for the results. Without the mutation, the grade 3 and substantial lymphovascular space invasion would have really not been good. I guess the other part is that you read that you should be fully recovered from the major surgery in 6 months, or that you should be over the radiation 2 weeks after it has finished. That is just not my experience. I am a very active person, and have been disheartened by my decreased stamina and energy level. I just assumed (maybe foolishly) that everything would return to how it was. Maybe it won’t. I hadn’t really considered that - I was just in full on “do what you gotta do” mode, without thinking of what waited on the other side.

@dlgbb

In 2022 I was diagnosed with an aggressive endometrial cancer, stage 2 grade 3, with no POLe or other significant (helpful) markers. I had surgery and a recurrence while getting chemo (so I’m chemo resistant) - and also had the full external beam radiation treatment as well as brachytherapy. I think I went through the treatment months in a fog, living one day at a time and counting down the days until it was all over. Recuperation was slow and had its ups and downs. The emotional piece is HUGE. But instead of survivors guilt I have fear of recurrence. Every permanent body change is a reminder of my diagnosis and every new symptom sets off worry of recurrence (of a cancer with no cure.)
The general public, which was me before cancer, has no idea what we live with after the treatments are behind us. Don’t beat yourself up. The emotional piece is very difficult. I was able to get a 1:1 mentor via a cancer support group and also spoke with a social worker from another group. A therapist was also helpful.
Don’t be afraid to ask for help from people who understand. This forum is also great for that. Best wishes!!

@dlgbb Now I understand why they did so much radiation. It was due to "substantial lymphovascular space invasion". I had very little invasion (though it'll only take one rogue cell to ruin my life). You said, "part of me feels like I shouldn’t ever feel down, or have days when I worry about recurrence." Feeling down and worrying about recurrence is normal after a cancer diagnosis. We never know if we are truly cured, so everyone worries about recurrence, no matter what stage they're in or what mutations they have, and that makes us feel down. Those feelings are independent of other people having it better or worse. YOUR life is now different. Own it, mourn the past, and be optimistic (happy it was caught early in your case). All of those feelings are normal and okay.

I was diagnosed with Stage 1a clear cell endometrial carcinoma. I had a Total Hysterectomy with BSO. I had 5 brachytherapy treatments beginning about 8 weeks after surgery healed.
Clear cell is also very agressive and there's little information on it because it's so rare.
For reassurance and at the urging of my Gyn - I had a consultation with a Gynecological Surgical Oncologist at MD Anderson. The pathology was reviewed by them as well. I was told that the treatment plan I had; the surgery, brachytherapy to the vaginal cuff and exams every 3 months for 2-3 years and then every 6 months for a total of 5 years was - for lack of better words - the current protocol for treatment and surveillance. That I should feel reassured that I have done everything possible at this time. And my radiologist oncologist said the same. I am at 14 months post surgery. I can only hope that it won't come back. You can check with your oncologists however Stage 1 cancer usually does not require chemo. I previously had Stage 1a breast cancer with 33 radiation treatments. No chemo recommended. I did have adjuvant hormonal treatment. I just finished and it's been 10 years with no recurrence.
Hope this info helps you and maybe some peace of mind. Good luck and G-d bless 🙏

@inquirer, Thank you so much. You totally understand. I understand the dilemma that you faced, too. After my surgery, I was offered the chance to be in a clinical study and forego the radiation, with the “wait and see” approach. After discussion with my kids and husband, they asked that I do it. It was so tempting, though, to make the other decision. We never really know what is the right thing to do, do we? What made me decide to do it is that the study paperwork stated that the survival rate was very good for POLe mutations, but it was unknown whether it was good just because of the mutation, or because of the mutation/surgery/radiation combination. I didn’t want to risk it. The high grade and substantial lymphovascular space invasion scared me, and I didn’t want to take a chance. Just think - in a few years when the clinical trial study is done, somebody else may not need to make that decision!

@dlgbb We are in the same situation and are of like minds. My relatives said they trust my judgement, but the concerned look on their faces when I chose not to do chemo said it all. They wanted me to do it, and I was going to do it until I learned that the facility at UCLA did not offer icing for neuropathy. I wanted to minimize the damage it would cause. I then setup other appointments with 2 other oncologists (at UC Irvine and MSK) and they explained why "wait and see" was a good approach for me, siting very little lymphovascular invasion. After four months of researching, going back and forth (being 100% sure I'm going to do it and being 100% sure I'm not going to do it), I was exhausted. I finally made the decision to forego chemo and radiation. However, based on other experiences I read about on this site, I think your decision is best.