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Long-term side effects of pelvic radiation - 6 months after treatment
Gynecologic Cancers | Last Active: Nov 26 9:17am | Replies (22)Comment receiving replies
@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!
Replies to "@inquirer, Thank you so much. You totally understand. I understand the dilemma that you faced, too...."
@dlgbb When I had 25 treatments of external radiation therapy my radiation oncologist told me I might experience some "swelling" on the sides of my pelvis where the lymphovascular system is located. That did not happen to me but I do recall that this was one of the side effects that I might experience. I did have digestive problems and occasional diarrhea during radiation therapy but this went away with a month or two after I finished. Like you, I'm wondering if these symptoms you are experiencing are related to the radiation.
I'd have to go back and look at my medical chart to find how just how much radiation was applied during each of my 25 sessions. This is calculated differently for each of us and this likely has an effect on the side effects we experience. I recall that my radiation oncologist worked closely with the radiation oncology physicist on these calculations. I'm going to do some research on this and post what I find out.
Radiation Oncology Medical Physicists:
The big question is how long should we expect to experience side effects from radiation therapy?
It's been 6 years since I was first diagnosed with endometroid adenocarcinoma, FIGO Grade 1, Stage 1a, and 4 years since the recurrence was located in the vaginal cuff by my nurse practitioner during one of my cancer surveillance appointments. When I review what members post here about the genetic and molecular testing that was performed, and treatment options informed by that testing that I did not have 6 years ago I realize how far gynecological oncology has come. As you wrote maybe in a few years after the clinical trial study you were in is completed and published other women will not have to make the decisions that you made.
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@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.