Radiation options and side effects for stage 3 endometrial cancer adenicarcinoma

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. 

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!

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 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

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

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. 

This is so helpful, MoeKay! I've printed it out and added it to my research folder.

Thank you so much.

EG

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.

Yes, CSN's info is incredibly valuable. What I found on here helped me tremendously. I hope my postings have helped others.