What Kind of Radiation Did You Get for Your Gynecological Cancer?

Pole Mutation noted on my Path Report

Was diagnosed in May this year, stage 3 or grade 3 idk, but had the related organ failure, kidney due to tumors comprising tubes etc. Once tumors removed, the kidneys were fine. Had blood clots in legs,so those issues left my body at 95lbs, very weak couldn't eat much. So I gave myself recovery after surgery to gain weight,get stable. I gained 20lbs, and now trying to see what treatment is best, accurate to do. They want yo start radiation this next week 5 weeks. I do have the "Pole E"

@tdfraze Welcome to Mayo Clinic Connect and our Gynecological Cancers Support Group. I was diagnosed with endometroid adenocarcinoma FIGO Grade 1, Stage 1a in 2019. In 2019 I had a radical hysterectomy with additional removal of ovaries, fallopian tubes, and cervix. I did not have any other treatment at that time. No radiation therapy or chemotherapy. I had a recurrence in 2021 found by physical exam by my nurse practitioner. I then had 5 weeks of external radiation therapy and 2 sessions of brachytherapy. I have had no recurrences since then or any evidence of disease.

When were you diagnosed and what treatment have you had or what is planned. How are you feeling?

Did you have chemo? or only radiation? I have stage 3 endo cancer, but have the Pole mutation

I was diagnosed with stage 1b vulvar cancer in may 2023. Still seems like yesterday. I had 32 rounds of radiation & 2 rounds of chemo (was supposed to have 5 but couldn’t do it), my radiologist & staff including my obgyn oncologist were all great! I got thru it all. The only complaint I have is that no one prepares you for the after effects of all your treatments such as side affects! Does anyone have any??

Hi Diana,@dlgbb
Just three days left and counting?

Red is my favorite color. Not because I am a Flames fan either. I just love the color so to see all those flaming red jerseys on the ice of a powerhouse hockey team would be quite the sight. And then your friends surprise you with hot air balloon ride tickets!! Now, that's a homecoming gift. There is a hot air balloon festival in Vermont that I went to a few times. I loved seeing those gorgeous colors in the air and watching the process of getting the hot air balloons in the air. and coming back down. It felt like something out of the 19th century. And of course it is.

I am hoping, too, that the cardiology appointment goes well in May. As the weather warms up we are all just itching to get outside and even more so for you and your activities that you enjoy. In my experience I was fatigued for a few weeks after I finished radiation therapy. I would say it took me a good month or two to get my energy back. I don't recall having much diarrhea after the radiation therapy ended. I listened to my body and did not push myself too much. My radiation therapy ended in mid-January which is a time I would be doing winter sports but that winter I did not. I went back to the gym and continued my workouts to slowly build up my energy and endurance again.

Thank you for asking after me. It's been 3 years since I finished radiation therapy so my appointments now are every 6 months (previously the appointments were every 4 months). My next appointments will be just 4 weeks away in May. I live in a small town in the Upper Peninsula of Michigan so I continue to get my speciality care at Mayo Clinic in Minnesota. When the weather is pleasant we break up the drive to and from Minnesota by staying overnight near a wildlife refuge. I can hike and go birding to my heart's content before we continue on to Mayo Clinic.

I so appreciate your posts. You have helped others understand and learn about the gynecological radiation therapy journey. You get to know the providers and techs who work in the radiation therapy setting and form a sort of community with them. And other patients who have appointments at the same time as you.

I'd like to "tag" @dlgbb, you, Diana, to come back here and support others who are trying to figure their way through the endometrial cancer that you and I have and are experiencing.

Please let me know when you get back home and how your recovery goes, OK?

Hi Helen!
I was given information ahead of time about what to expect, as well as dietary information to try and help minimize the diarrhea and make treatments easier (e.g. eliminating fibre, etc.). I have seen a radiation oncologist once, but have telephone call visits weekly with a nurse. Everyone has been so incredibly helpful. I have never felt unable to reach out with questions, and the radiology technicians have been unbelievable. I will actually miss them. They are just so kind.

I went to the hockey game with 2 friends of mine who live in Calgary now. It was a great evening out. It took a bit of prep - an Imodium and I skipped supper because I didn’t want to have any stomach issues, but it was well worth it. I am not a Flames fan, but it was still a great experience! It was their last regular game of the season, and sold out. Quite a sight to see all the red jerseys!

Speaking of bucket lists, when I was first diagnosed, a friend and I were discussing our bucket list items. Not out of morbidity - just out of a “these are things I’d like to try sometime”. We both agreed a hot air balloon ride was on both of our lists, and I found out a few weeks ago and that my friend and his wife bought me 2 tickets for a ride in May!!!! Of course I am going to take my friend who came up with the idea, but wow - what incredible friends. I just love them!

I asked the radiation oncologist what follow up would look like, and it will be trips to Calgary every 3 months for 5 years, seeing first the radiation oncologist and then back to my surgeon who is a gynecological oncologist. If all is well, I may be able to see a gynecologist back home for the last year, but honestly, I would prefer to stay with the Calgary team.

The time here has gone quickly. I wish I had a bit more energy so that I would have gotten more work done on the quilt for my friend’s wife, but I guess I can finish it at home. I am not usually one to sit still for long, but I have spent a lot of time under a snuggly blanket, just peacefully doing Sudoku or reading. I am fine with that. I have learned to just listen to my body and adjust my schedule accordingly.

I think when I get home and am still waiting for my energy to come back before I jump back on my bike, I will begin some gentle yoga classes and just try and prepare my body to get back into my routine, which is pretty active. I also think I will need to take some time and just journal and process a little. I have so much to be grateful for. Then in May, I have some cardiologist appointments to deal with an issue that was discovered on my CT scan before the surgery happened. I am hoping that is the last step before I can just get back to the things I love.

I hope you are well, and want to tell you how much we all appreciate your mentorship, listening ear, and support. It makes the journey that much easier to have somebody who can relate.

Diana
P.S. My dogs jumped higher, but my husband hugged tighter!

@dlgbb Hello, Diana! Thank you for coming back and letting me know how the radiation therapy has been going. Diarrhea and cramping is the worst. And nausea. Like you wrote you can't really predict exactly what to expect. My radiation oncologist and the nurse informed me about all kinds of effects I might experience so I was prepared. Do you have weekly appointments with your radiation oncologist? I'm relieved to know that your radiation oncologist has been working so closely with you and prescribed medication that is helpful to you. Like you, I walked every day during my radiation therapy. That helped me to feel that I was continuing with my usual exercise routine and less like a patient.

Since you are in Calgary of course you just have to go to an NHL game! Did you go with your daughter? I've never been to an NHL game. When I lived in Montréal in the late 1980's I never got to a Canadiens game. Tickets were impossible to get and I regret not trying harder to get to a game. You've reminded me that getting to an NHL game is on my bucket list.

How nice that you went home this past weekend. For the Easter holiday? I can imagine how much you missed your husband and your sweet little poodles. I'm thinking everyone was happy to see you home. Who jumped more? Your husband or your dogs? 😏

So this is your last week of radiation therapy? Well done. After this week will you return to Calgary for your surveillance check-ups with the radiation oncologist or will you do that closer to home?

@naturegirl5

Hi Helen. Only 5 treatments left! The time has actually gone fairly quickly. It has been so helpful to have my daughters nearby, as well as my sister and friends to pass the time with. On days that I have felt well, we have had some fun outings, including my first NHL hockey game (Calgary Flames vs. Vegas Golden Knights). The radiation has been harder than I expected, but I guess you don’t really know what to expect! There is fatigue for sure, but not totally debilitating. The biggest issue is the diarrhea and stomach cramps. Just brutal. The only thing that doesn’t send me running is a poached egg in the morning. My radiation oncologist started me on Ondansetron to help with the nausea, and I am taking Imodium as needed. Once my stomach settles down, then I feel pretty functional. I have been out for walks every day, especially this weekend when I went back home. It was so good to be with my husband and dogs. Anyway, countdown from 5 is on now.

@dlgbb Thank you for posting the sweet photo of your little poodles. The place you are renting allows your poodles? When I was away from home for radiation therapy I didn’t find anywhere that would allow my cats and I missed them so much. But, I consoled myself with the thought that they are cats and although I was unhappy without them I knew they were far happier staying at home. My husband or my neighbor took care of them.

You are entering this radiation therapy with a happy spirit and I know from experience that this makes a huge difference in going forward. With the mountains so close I hope you will take some day trips after you’ve completed your radiation therapy for the day. You can see by my screen name of nature girl that this is what would interest me. My radiation oncologist told me that getting exercise every day would be helpful to me so I did a lot of walking. With the shops and parks you’ll have plenty of opportunity to do just that.

Will you keep me informed on how you are doing as you start the radiation therapy?