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

Good morning,
I wouldn’t say the issue is resolved. I was started on B12 because my count has dropped almost in half and is borderline low end normal, and will have blood work completed again next week. I feel better in terms of mood, but energy is still an issue. We will see!

I just can’t help feeling like something is off. My pelvis and legs are very tingly a lot of the time, and sometimes feel weak. This could be the B12, so hopefully the supplement start to make a difference.

@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:

-- https://www.mayoclinic.org/departments-centers/radiation-oncology-medical-physicists/overview/ovc-20580550

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.

@dlgbb, hello there. Although my gynecological cancer was different than yours, because I have sustained a great deal of external and internal beam radiation, in addition to being on immunospressive therapy for rheumatoid arthritis for years, I live with chronic lymphocytopenia, and I had poor nutritional absorption from years of taking NSAIDs. I had StageIIB recurrent vaginal cancer, that resulted in total pelvic exenteration. My exhaustion and GI issues had been great for 3 years. I finally was tested nutritionally (lots of tubes of blood) and was deficient in zinc, iron, B-12 and most other B vitamins. If you've been experiencing diarrhea off and on, you can be tested by a hematology oncologist at your cancer center and see what you need. I have had B-12 injections once a month in addition to B-complex and zinc supplements (and a occasion iron infusion) for a couple of years now. I definitely feel better for it. I'm glad they discovered that you need additional iron. Checking for these other nutritional deficiencies is not completely unusual, but sometimes you do have to be a bit assertive to get some docs order the testing. Insurance does cover it. Just some thoughts!

@tatersinger ,
Thank you so much. I really appreciate the information. It turns out, after blood work, that my iron was fine, but my B12 is way off, along with my white blood cell count and neutrophils. I am on B12 now and having follow up blood work later this week. Hopefully the numbers improve. From what I have read, low B12 can cause the tingling/buzzy feeling I have been having. We will see where we go from here.

@inquirer I am understanding as I have a similar situation. Be strong and your family like mine want the best for us, but they aren't informed as we would hope. It's what they think is the best because they don't want to lose you. My family is half and half but they don't want to say like yours as the guilt would be too much if it didn't work and I love that they want me to make the decision. I get another scan in February and my doctor is supporting my decision. Glad that you are researching as I did and it did change my doctors recommended treatments because of that. A second opinion or more is very beneficial. God Bless and hugs and prayers to you and your family.

Thank you for posting as I haven't yet decided on Radiation. Good luck and know your posts are very helpful. Happy Thanksgiving, Hugs & Prayers

@greatgrandma2025
Good morning! Please know that I am NOT trying to dissuade anyone from radiation. Despite not feeling well right now, my family and I still feel that it was the right choice for me. I wish you all the best with whatever you decide - choose what is right for you. There are so many factors to consider, and only you know what is the right decision for you.

@dlgbb I appreciate your comment and you are right each of us has to apply all the knowledge we receive here. I have come to understand each of us have a choice, but I have learned so much from all of you that it has made my journey much easier. Prayer and all of you have helped me. God Bless you all.

@greatgrandma2025
Please let me know what you decide. A very wise friend has pointed out to me, too, that after the emotional and physical trauma of cancer, it is our tendency to attribute any new symptoms to either a recurrence or to the treatments we have received, which may or may not be accurate. I will know more after some follow up this week, and my symptoms could be totally unrelated. We just do the best we can, day by day. Best wishes to you.