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Radiation options and side effects for stage 3 endometrial cancer adenicarcinoma

tinacap77
Posts: 28
Joined: Oct 2020

I was diagnosed with Stage IIIC1 endometrial cancer Adenomacarcinoma on 9/11/2020 after complete hysterectomy including cervix and 12 lymph nodes removed with 1 pelvic one positive for cancer. Uterine wall invaded 82%. I am more than 1/2 way through the chemo treatment with two more to go. It was recommended that I have 5 weeks of 5 days a week external radiation and 3 weeks of internal radiation two times a week. I got a second opinion from another hospitals gyn oncologist Who agreed with the chemo plan but felt that the radiation plan was overkill. The second opinion Dr. recommended internal radiation only. She said that the external radiation is actually more toxic than the internal because it can't be controlled as well.

I don't know which doctor I should listen to! Of course I'd rather do as little radiation as possible and would love to hear from other women with stage III endometrial cancer adenicarcinoma and what treatments they did. 

zsazsa1
Posts: 539
Joined: Oct 2018

This is a tough one.  I chose, for UPSC with only two sentinel nodes taken, and one with isolated tumor cells in it, to be very aggressive and have pelvic IMRT done, which tries to focus the radiation on the lymph node beds.  I had horrible diarrhea (which was helped by probiotics, wish I'd known to start them a week before radiation), but I've had no recurrence thus far (surgery Oct 2018, done chemo around April 2019, done radiation June 2019), and UPSC is highly aggressive.  I'd say it took about three months to recover from the radiation induced diarrhea.  Since then, I've been mostly fine, and better and better in terms of colon function.  No significant urinary tract damage that I'm aware of.

But then, a study came out indicating that whole pelvic radiation did NOT improve odds of survival in advanced uterine cancer.  https://news.feinberg.northwestern.edu/2019/06/radiation-plus-chemotherapy-doesnt-improve-endometrial-cancer-recurrence-free-survival/  This was reported just as I was finishing radiation.  The takeaway was that although radiation prevented recurrences in the irradiated pelvic areas, recurrences occurred outside of the pelvic area.  So I don't know what to tell you at this point.  I would say that the radiation made my life miserable for 5 months, so that certainly could be taken into consideration.  Plus it increases one's risk of other malignancies down the road.

tinacap77
Posts: 28
Joined: Oct 2020

ZsaZsa: thank you for your reply. I need to be able to return to work at some point and diarrhea would make it impossible as I am a clinician who works in home health.

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

MAbound posted a good quote and related link of the criteria for radiation at https://csn.cancer.org/comment/1676704#comment-1676704

My gynecological oncologist and medical oncologist urged me to have pelvic radiation after chemo, even though both admitted that it wasn't proven to improve survivorship. Studies have indicated that it could prevent a recurrence in the pelvic area.

It's very difficult decision when weighing the possibility of long-term side effects against the possible benefits. Given the aggressiveness of my type of cancer, I decided to have the external radiation, even though a CT-scan indicated I was NED after chemo. No one suggested internal radiation so I didn't have to make a decision about that like you need to do.

During radiation, I did have some initial diarrhea (a problem that persisted throughout my entire treatment period). But I switched to the recommended low fiber, bland diet right away. This controlled the diarrhea I had been plagued with. I actually felt okay during radiation (much better than during chemo) and worked that entire period. I did develop bladder inflammation during the last week of treatment (as the radiation oncologist had told me might occur). This went away about two weeks after radiation ended.

Women's responses to radiation do vary quite a bit. While I had a relatively easy time, others like ZsaZsa have found it very difficult. 

MoeKay
Posts: 300
Joined: Feb 2004

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

What if the Second Opinion Disagrees with the First?

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!

EZLiving66's picture
EZLiving66
Posts: 1452
Joined: Oct 2015

I had UPSC with incomplete staging - either II or III. My oncologist/gynecologist recommended six chemos of Taxotere and Carboplatin with no radiation. He told me they'd use radiation "when" it came back. I only made it through three chemos because of the severe side effects I had but, five years later I'm still NED (No Evidence of Disease). 

No one can tell you what you should do but I think reading all the available info out there and then maybe getting a third opinion, you can make an informed decision.

I certainly wish you the best on this journey!

Love,

Eldri

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NoTimeForCancer
Posts: 2840
Joined: Mar 2013

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.  

Maxster
Posts: 56
Joined: Apr 2020

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!

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Kaleena
Posts: 2053
Joined: Nov 2009

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
Posts: 28
Joined: Oct 2020

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

 

Tina

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Forherself
Posts: 463
Joined: Jan 2019

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2840
Joined: Mar 2013

Tina, thank you for noting this.  I was thinking of someone from long ago and had wanted to see what they had written about their dx and tx.  I was saddened to see nothing there and would like to encourage everyone, as our friend derMaus (Bobbi) had done, to update their about me page so it will help others with information on their journey.  

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

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.

tinacap77
Posts: 28
Joined: Oct 2020

Hi: did you do radiation? If so what are side effects snd how long ago?

Thank you

Tina

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

I only did 3 brachytherapies.  The radiation oncologist did not want to do pelvic radiation even though my gyn onc wanted it.  He said it would be detrimental to me because of how bad I scar and that the long term effects would be worse than not having it done.

My chemo was in 2005 and my brachtherapies was in 2006.   The brachytherapy had caused a blockage in my ureter about 10 years later which I got fixed.

Kathy

Molly110
Posts: 182
Joined: Oct 2019

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

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Tamlen
Posts: 281
Joined: Jan 2018

I was Stage IVB at diagnosis, with mets in my lungs but nowhere else outside the uterus. I had 5 rounds of brachytherapy halfway through chemo in summer 2018. It was pretty easy, though I did develop radiation-induced cystitis after 3 rounds, which took a few months to completely resolve. About two weeks after brachy ended, I developed urgency in my bowels every morning, though not diarrhea. I was told it was probably due to the radiation. Probiotics helped some, but not a lot. It was a real problem for me because I couldn't leave the house for work until the morning's urgency appeared (and it would come out of nowhere each morning, very suddenly, and I couldn't be very far from a toilet when it happened). It took about two years to mostly resolve and things are mostly normal now.

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Dak82
Posts: 14
Joined: Dec 2020

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
Posts: 539
Joined: Oct 2018

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.

Molly110
Posts: 182
Joined: Oct 2019

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

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NoTimeForCancer
Posts: 2840
Joined: Mar 2013

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

Molly110
Posts: 182
Joined: Oct 2019

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

Dak82's picture
Dak82
Posts: 14
Joined: Dec 2020

I have only 3 sessions of brachytherapy scheduled with 2 complete and final one on Tuesday. Since Huntsman is part of the University of Utah health centers it means lots of students are present for procedures. That was pointed out to me before I started. I am retired USAF and was wearing an AF beanie to warm my newly shaved head at my first session which generated much discussion with the resident. He is a Captain in the USAF but new to radiation oncology I guess. Since he had never attached the source cable before the nurse let him practice. It really is about touch! So far so good on everything. 3d round of chemo in a week. Got clearance to resume all activities from gyn-onc so back on my bike (indoors only) and adding jogs to walks. Also seeing PT for abdominal exercises. Thanks to everyone here for relaying their experiences--I was staged as IIIC2 endometrial adenocarcinoma, grade 3, with extensive LVSI.

ConnieSW
Posts: 1536
Joined: Jun 2012

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. 

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