high dose radiation tx for stage 1b, grade 2 endometrial adenocarcinoma?

I had abdominal surgical hysterectomy with the uterus, fallopian tubes, ovaries and lymph nodes taken. Path report came back with stage 1b as the cancer had gone 47% into muscle wall (myometrium). grade 2. There was lower uterine segment involvement which is considered a risk factor. Lymph nodes and pelvic washings showed no cancer.

My gyn/onc did not recommend further treatment but gave me the option of following through with 3 high dose radiation treatments (vaginal brachytherapy) focused at the top of the vagina, the cuff as that is the most likely place for recurrence.

Has anyone had experience with this treatment? Risks/benefits? We go to talk with the radiation oncologist next week. What specific questions should we ask? Thanks for any ideas.

Frif

Hi frif:

Sounds like your cancer was caught at an early stage and that's great!

The only question I can think of at the moment is, "is this really necessary right now or can it be held in your arsenal" because once you have radiation treatments, you can't have them again in the same area. I think that's something you should definitely discuss with your docs.

Risks are vaginal shrinkage, scarring, irritation, burning, that type of thing, but most don't have any problems from it. My problems are all from the external rads I had. That being said, though, everyone is different and reacts differently to treatments. Some have no problems at all and others do.

The benefit would be peace of mind knowing you did all that you could to fight this dreaded disease.

Hugs.

I had internal brachytherapy. Mine was done as inpatient for 3 days. I know not everybody's is done like this. I have had no problems from this treatment. I do have issues however with scar tissue causing somewhat painful intercourse, BUT, this is MY fault. I am not as sexually active as I should be and I don't use a dilator to make up for not having sex about 3 times a week. Other than that, it wasn't a problem. In fact the day after I was discharged I was out shopping and getting my hair done.

frif,
I am sorry you find yourself here with a cancer dx but as you're already seeing the women here are so helpful and supportive.
My cancer was dxed as endometrial stage 1b1 and my gyn/onc recommended no further treatment since he wanted to hold radiation for use if there was a recurrence how very slight that might be with a low stage cancer. As you already seem aware, the decision re further treatment(s) is based on many factors in each individual case and also includes the individual doctor's preference.
Among possible questions you may want to ask::
-The one you've already note - the risks vs benefits of further treatment.
-Statistics for recurrence given your stage and grade with and without radiation treatment.
Good luck and pls let us know how you make out.
s

Frif

One thing I would do is have a second indepedent opinion of the biopsy slides done. It only takes a week to get back. Originally, I was told that I had 37% invasion but this after the recurrence, those slides were revisited and now put at 80%.

I will never now if I had futher treatment two years ago would it have prevented what I am going through now. I would ask the radiation oncology what he would recommend if it was his sister or wife?

Take Care
Lyn

Dear Frif,

You're getting great advice here, and I don't have much to add to it. It's my understanding that internal radiation (brachytherapy) has fewer side effects than external. I had one internal and 26 external radiation treatments, but I didn't have much choice, since my endometrial cancer was much more advanced. I might ask your gyn/onc if brachytherapy is more effective as a preventative treatment (as yours would be), or as something to hold in reserve in case of recurrence.

It's common for people to get second and even third opinions. I'd definitley recommend it. Best of luck, and we'll all keep you in our thoughts.
Reg

Frif,

I had a grade 1 stage 1B ( with 31% infiltration). My GYN/ONC usually suggests internal radiation at 33%. Yikes! It was a close call. When someone says they have a stage 1B...it can be all the way from 1% to 50%. There is a difference in risk factors in regards to the depth of invasion.

At grade 2 and 47% you are very close to a Stage C. With a stage C recent studies show a significant survival statistic. I believe my ONC/GYN would have recommended internal radiation for you.

I tried to access the NCCN Practice Guidelines for you, but I think you have to register now? It is a good source of information for the lastest treatment recommendations. It is put out by the top 9 cancer centers. I suggest you try to get on there and look up your stage and grade.

I believe you also have an added risk factor with lower uterine involvement.

I am not a Doctor. These are just my personal opinions through my own research. But, if it were me I would consider the radiation. I've been on these boards for going on 5 years and I would not want a recurrence of Endo C.

I also understand the comments from the Sisters about keeping radiation in the arsenal for further treatment if needed. However, with your grade and infiltration, and lower uterine involvement your risks for recurrence may be high enough to warrent treatment now. I also agree that you need a second and even third opinions to feel comfortable with your treatment choice.

Please keep us posted.

Hugs, Diane

Ps Side effects are low with internal radiation but there are risks of course.

Frif:
I think you have gotten some excellent advice... I would only like to add that you can go to NCCN.org and just by putting in your e-mail address open up their home page, click on Upper left (NCCN Clinical Practice) and on the next page that opens scroll to the lower right area.. There is a section called uterine neoplasms... It is a 48 page document and at pg 11, you will locate your stage/grade of cancer.. It states either observation or bracytherapy if there were no other risk factors.
I found it a significant help to me, as my gyn/onc suggested radiation or chemo, and I withheld both, mostly to use if and when there is a recurrence.
There are always 2 sides (as seen by Joyful Walkers post)... It is interesting that re-read slides can vary so much from the original dx. At any rate, the best we can do is make the choice that seems the best for us.
Let us know what your decision is, or if you need more info, I am sure others will come along to share their stories.

Frif, my opinion, for what it's worth, is that if your gyn/onc thought it was absolutely necessary, he/she wouldn't have presented it as an "option." My diagnosis was Stage 1C, grade 3, with vascular involvement. I had chemo, but no radiation.

Tthere are numerous studies that have been done on the risks vs. benefits of radiation as a pre-caution. Before you decide to go with it, look these studies up. Then when you have your appt., you can ask how the rad/onc feels about the conclusions of the studies. Nobody wants a recurrence, but if you have external now, if it does recur, they can't re-radiate externally.

Frif,

My situation was very similar to yours except that I had an 11% infiltration. My oncologist recommended exactly the same treatment that yours is recommending. He did say however that it wasn't an absolute necessity but that it increased my chances of the cancer not recurring. After asking several other doctors about it I decided to go ahead and have the treatments.

I found the brachytherapy to be painless. It's probably not my favorite thing to do but it is a fairly easy procedure. I had no side effects from the treatments, they don't disrupt your life at all. You will have to use a dilator three times a week for a while (two years in my case) and that can be a nuisance but apart from that life goes on as usual.

Good luck with your decision. Feel free to contact me if you think of any questions concerning my experience.