Radiation options and side effects for stage 3 endometrial cancer adenicarcinoma

Here's some information from Medline on what you might want to do when first and second opinions disagree:

Chances are good that the second opinion will be similar to that of your first doctor. If that is the case, you can feel more confident in your diagnosis and treatment plan.

However, the second doctor may have different ideas about your diagnosis or treatment. If that happens, Do not worry -- you still have choices. You could go back to your first doctor and discuss the second opinion. You may decide together to change your treatment based on this new information. You can also seek the opinion of a third doctor. This could help you decide which of the first two options is better for you.

Here's a link to the entire article from which the above was taken: https://medlineplus.gov/ency/patientinstructions/000930.htm

Now for my own radiation story.  I was treated for endometrial cancer in 1999.  When I went for my consultation with my gynecologic oncologist before surgery, he told me that after surgery some women need no radiation, some need only internal radiation, some need only external radiation, and some need both internal and external.  I ended up needing both due to a number of risk factors determined after pathological review of my case.  My gyn-onc explained that the main reason he believed I needed the external radiation was that my tumor was deeply invasive, having penetrated through approximately 80% of the thickness of my myometrium, or muscle wall of the uterus. 

When I went for a consult with my radiation oncologist, she only talked to me about needing external radiation, not internal.  So I contacted my gyn-onc and told him what the rad-onc told me.  He said he would call her to discuss my case and the risk factors that he believed justified the internal radiation as well.  After the two physicians talked, they both agreed that my gyn-onc's treatment plan was in my best interests, so I had both internal and five weeks of external radiation. 

It's my understanding that most insurance companies will pay for third opinions, especially in cases where the first two opinions disagree. 

Wishing you all the best!

tinacap, this is a tough one, and it might be worth having both a discussion with them and seeking a 3rd opinion.  I understand your concern with severe side effects, and I cried like a baby when I heard about what they could be.  Probiotics, any time, is a good idea but even more so with radiation.  I had a dietician show my a study of women with cervical cancer radiation of those who took and did not take probiotics.  Dramatic!!  

Keep in mind, everyone is different.  It does take adjusting diet and routine, and it is possible to work throughout it all for those with lesser side effects.  

Hi Tina!

After chemo, it was suggested that I do HDR Bracytherapy and Pelvic Radiation.  My radiologist did not agree with my gyne oncologist on this.  He thought the Pelvic Radiation would be detrimental to me and that the risks outweighed the benefits.   Therefore, I only did HDR Brachtherpy radiation.   The reason for the disagreement was that I scar very easily and my insides were already pretty scarred up and that the Pelvic Radiation would cause more scarring.

Long term effects from the brachytherapy was a blockage in my ureter (10 years later).   I am now having issues with scarring from all of my surgeries so I am glad I was opted out for Pelvic Radiation.   

Just remember everyone is different and no two treatments are alike.  You have to do what is best for you.

My best to you!

Kathy

tinacap77 said:

Radiation options

Hi: thank you fir your reply? What was your diagnosis?

 

Tina

If you click on someone's screen name there is often a description of their journey.   

tinacap77 said:

Radiation options

Hi: thank you fir your reply? What was your diagnosis?

 

Tina

Hi Tina:

Stage 3A, Grade 2 Endometrial Adenocarcinoma.  They couldn't find a primary.  Thought it might be MMM but went with Endometrial.   It was found in my uterus, cervix and left ovary.  They treated it though as Ovarian Cancer.

Tina, I had a different kind of uterine cancer than yours, and I only had internal radiation (vaginal brachytherapy). I had 5 rounds, which is what my center recommends for my kind and stage of cancer.  I was terrified of radiation and didn't want to do it. As I understand the data -- but I may well have this wrong -- for women with the cancer I had, vaginal brachytherapy reduces reoccurence in the vagina but not overall survival. However, I have a brilliant, kind, and compassionate gyn/onc, and I decided early on to put my trust in him and follow his advice. The way that it worked for me, is that I discussed all my questions and concerns with him, and he explained why he recommended what he did. He was always open to questions and made sure I knew that the decision was mine and that if I decided against any particular recommendation, there were other things we could try. So, I went with the brachytherapy and, for me, it was a snap. The worst part was driving to the city once a week for 5 weeks. It isn't painful and the actual radiation time was, for me, just a few minutes. I have been fortunate not to have had side effects, although I understand they can come later, as Kaleena describes.

I'm glad I didn't get different treatnent recommendations from my gyn/onc and the radiation oncologist, as I wouldn't have known how to decide. I got all my care from a major acadmic medical center, and I believe that the gyn/oncs and radiation oncologists confer on each patient before making the recommendations. I agree that a third opinion is a good idea if the first two doctors cannot agree and you don't have a sense of which you can trust to make the right recommendation for your particular circumstances. 

(In terms of the ability to control external radiation, perhaps you can ask if your center does proton radiation? I believe that the benefit of those machines is the ability to target the radiation more precisely and spare healthy tissue.)

Good luck with your decision.

Molly

Diagnosed with endometrial cancer, stage IIIC2, grade 3. Myometeium intrusion was 95% and cancer was found in left para-aortic and left iliac lymph nodes. Had a partial vaginectomy as tumor had developed there. Margin was not clear so gyn-inc recommended intravaginal brachytherapy done in 3 sessions, once a week during chemo. First one is next week a few days after 2d chemo round. I am also supposed to have 5 weeks of external radiation after chemo. Will follow up with my reactions to that. Somewhat funny story is that all docs and nurses seem to want to preserve enough vagina to have "normal" sex life. Believe me, this is not a concern for either me or my husband because our sex life was pretty non-existent before this. I am touched by their concern though.

Deb

zsazsa1 said:

Hello, Deb.  I hope you're

Hello, Deb.  I hope you're tolerating the chemo well.  Most women have said that the intravaginal radiation isn't that bad.  The external was not fun for me - very severe diarrhea - but probiotics helped.  If you can, start it a week before you start the external radiation.  And of course, as with everything useful, I learned it from women on this board.  I get what you are saying about the docs and nurses being more concerned about preserving sexual function than you are.  I remember going back in to see the GYN/Onc after all the chemo was complete, and my vaginal cuff was finally healed.  I'm a matronly late 50's type.  Doc was a beautiful blonde 30's type.  She asked if I'd resumed sex, and when I said that yes, we had, she high-fived me!  She made such a big deal about it.  Honestly, what I was most concerned about all through this has been staying alive to finish raising my kids, and she was concerned about sexual function.

I'm always fascinated by the different ways we all respond to the same situation. It is a pet peeve of mine that so many health care providers assume that sexual function is not important to older women. It really set my back up when a young male radiology resident was surprised when I asked why the center did five brachytherapy sessions as the standard rather than the more usual four.  I was concerned about vaginal damage, and he said older women didn't need to bother with the vaginal dilators after brachytherapy since they usually don't care about sex. Had radiation been around in the Victorian era, his attitude would have fit right in with the times. I'm in my mid 60s, and my onc/gyn's assumption that I was sexually active felt like respect to me, although perhaps assumption isn't quite the right word. It was more that he talked with me about every area of my life and how that might be affected by chemo and radiation and what to do to prevent as much damage as possible, and talking with me about sexual function was a natural part of those discussions.

Great news, by the way, about your older son! 

Molly

NoTimeForCancer said:

Thanks you for sharing that

Thanks you for sharing that story, Molly.  I am going to be working with a group on radiation for uterine cancer and that is good to know since everyone else are radiologists!  Sheez.  I am single and would like to think there is hope for me yet!  LOL

How interesting! Are you a patient advocate or perhaps a health care provider? I used to work in advocacy for patient- and family-centered care, including medical education, so it was interesting for me to see how much health care systems have incorporated so many of those principles and practices. Although, of course, not everyone gets it. : )  The resident, fortunately, was an outlier. The actual radiologist --who looks to be in his early 40s at the most -- was lovely. He was great at explaining things, gentle and respectful. I also loved the main nurse, who was smart and warm and kind and funny. She often wore a teeshirt that said "Stay Calm and Beam On" below a picture of the symbol for radiology.

One thing that suprised me, because no one mentioned it, was how many people are involved. I am not particularly "modest" (in the old fashioned meaning of the term), but I would have liked to know in advance that at least a dozen strangers would be involved in the brachytherapy. I have friends whose mothers don't go to the gyn because they are shy/modest about their "lady parts" to use the term on your sign. It would be good for radiologists to know that they should inform patients if a lot of people are going to be present for any scan or treatment.

Luckily, out of all the people present, there was only one person who was awful -- an insenstive old woman, whose role was unclear to me. I think she may have had something to do with the actual machinery or the radioactive material, as she was only there for the fitting. She didn't come across as anyone with the least notion of how to interact with patients. She was in a hurry, so instead of having me change in the room designed for that purpose, which opened into the treatment room, she had me change in another room and walk almost unclothed down a hall with patients and staff of all kinds walking around. (She was in such a rush that she grabbed all my things and dumped them in the treatment room, overlooking my phone. I had to come back to the downtown hospital to get it, although I realized what she'd done before I was too far away.) When I got to the room with the big machine and many strangers, I was clearly anxious and unhappy -- I was stonily silent -- so after the fitting was over she said something snide and superior about how it wasn't so bad, was it? I came so close to suggesting that she take off her clothes and lie down on the table and open her legs while I went out to the waiting room and brought in a dozen strangers to stand around and peer at her. But I knew I was angry enough to cry and figured that would be her victory. I was happy to have the chance to evaluate her as part of a patient satisfaction survey. 

If anyone happening to read this is considering brachytherapy and is anxious or uncertain about it, I should add that, contrary to my fears, it was, for me, a very easy, painless process. Each session was just a few minutes, and I listened to an audiobook on my phone. I almost didn't do it, and I'm so glad that I did.

Molly