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What Kind of Radiation Did You Get for Your Gynecological Cancer?
I was diagnosed with endometrioid adenocarcinoma (Stage 1a, FIGO Grade 1) in 2019. I was treated for a recurrence in late 2021 with radiation therapy. I had 25 external beam treatments and 2 brachytherapy treatments. I'll share more details about the lengthy preparation and the actual treatments in a separate post below.
I know of members here who have had or are going to have radiation treatments. Would you like to share your radiation treatments and experiences with one another? This is a great way to support one another.
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@naturegirl5
Good morning Helen,
I also felt very comfortable with the staff who did the simulation. All young enough to be my children. I was telling a friend last night that with this kind of cancer, all modesty and discretion goes in the toilet, literally. It was great to get an idea of what the treatments will be like, the positioning, etc. I am not afraid of the radiation. But what strikes me every time I put a hospital gown on in the cancer centre is that all of a sudden I have a little sense of panic, in that it makes me feel “sick”. I have never considered myself sick through this process, because other than the occasional day, I have felt really, really well! Being in the hospital setting makes me feel differently, and I don’t like it. After the surgery, I didn’t feel sick or like a cancer patient because so many women have hysterectomies. But being on the radiation ward is just different. Yesterday I was just exhausted. I could hardly get off the couch. I think it is just “coming down”. I did take my 2 little toy poodles for a long walk, though, because I know exercise helps physically and mentally. Today I feel a bit more up, so we will see what the day brings. I am looking at the time in Calgary as a little vacation too. The property I rented is very nice with extra bedrooms for friends to visit, and in a good location close to shops and parks. It is a very close drive to the mountains, which we may do as long as I feel well. I know this too shall pass, and then I can just move onwards. Yes, I live in southern Alberta, so totally understand cold weather and blizzards! I appreciate your support so much. I am lucky to have many friends who are so wonderful to me, but it just really helps to converse with somebody who has already been through it. Have a wonderful day! Diana
@dlgbb Wow, this all sounds very positive. I remember well trying to get my bladder just full enough for the radiation therapy and to be able to wait long enough until my name was called. How cool that you were line dancing with no music! Oh, yes, and those little tattoos. On occasion I notice them now and wonder what's that new mole and then realize it's one of those tiny tattoos.
I stayed in 1/2 of a duplex in Rochester, MN for my radiation therapy at Mayo Clinic. It was nice to have my own space and also have an extra bedroom when a friend or relative stayed with me. I decided to make the 6 weeks sort of a vacation (in December and January?) by doing things I enjoyed and exploring Rochester. With your daughter so close to where you will be staying you can rest and visit with her.
The weather is better today. You're in Alberta, right?, so you well know what it's like the day or two after a big winter storm or blizzard. The side roads had not been plowed when I went out earlier today but it's better now.
March 24 will come up very soon. There was something reassuring to me about all the contact I had with the physicians, nurses, and techs during my radiation therapy. I hope you will feel the same.
How you are feeling this evening?
@naturegirl5
Hi Helen,
The CT simulation was fine. I was so fortunate to have a neighbour drive up with me. I live 3 hours away from the cancer clinic. She is the best company, and afterwards I was really tired, so she drove home. I got a better idea of what will be expected. I had been instructed that first I needed an empty bowel and bladder for the first scans, then an empty bowel and full bladder for the next one. The was hard, because when they did an ultrasound before the second scan to check the fullness of the bladder, they noticed the bowel was not empty enough. So of course, if you do one, it is impossible not to do the other! So then I had to drink the water again and wait. The second attempt was more successful, but I can see that it is going to be a challenge. I will say, they suggested walking to help with the full bowel, but it didn’t help a lot, so I went into a bathroom (they are very large there), and line danced without any music, which always seems to help. I am sure people were a little puzzled when they heard so many footsteps in there! LOL. I only will have to drink 2 cups of water an hour before, which is so much better than pelvic ultrasounds. I think it will be okay. I have my 4 little tattoos, got a general idea of the start date (the week of March 24), and have booked an Air BNB on the same block as my daughter. It will be very nice to be close to her, yet still have my own space for when I just need quiet. I hope the weather is better for you now!
@dlgbb It looks like your CT simulation was yesterday? I apologize tat it took me so long to get back to you. We had a blizzard that started on Tuesday evening and went into early this morning (Thursday) and we lost power for a significant period of time. So I'm just now checking back in to Mayo Clinic Connect.
Like you I wasn't terribly frightened before the surgery. In my case I had radiation therapy after a recurrence and just that recurrence was such a jolting shock that for awhile I didn't want to even consider the recommendation of radiation therapy. I didn't know what was going to happen during the CT simulation although in retrospect Mayo Clinic had some very helpful videos I could have watched. I made it through with a lot of help and support from the staff including my radiation oncologist and the technologists who explained everything to me before it happened. When I have a clue what might be in store I do much better.
How did the CT simulation go for you? Was it what you expected and were the staff who were present helpful? And finally, is your radiation therapy scheduled yet?
@naturegirl5 Good morning Helen, I got the call yesterday to come for the CT simulation on Wednesday already. It took me off guard, as I wasn’t expecting the call for 2 weeks. I am looking forward to getting the show on the road, but really emotional for some reason. I wasn’t like this before the surgery - I am not sure what the difference is. Maybe I just need to cry it all out today, and get on with it tomorrow. Suggestions?
@dlgbb You'll get very practiced with the full bladder! I'm hoping your team gives you lots of information prior to starting the radiation therapy so you know what to expect and what to look for.
@naturegirl5 Thank you so much for sharing this. I always like to know what to expect ahead of time. To me, the worst part sounds like holding the full bladder! LOL
I am amazed from reading the comments that nearly everyone had a cast made, I went to Stanford and they did not make me one they just had me situate myself on the table in the same position. I did have side effects, a lot of bleeding in my rectum. I went to Stanford thinking this was the best place to go after reading everyone’s procedure I am beginning to wonder why I didn’t have a cast made. The tiredness did not bother me it was the pain in my rectum and the bleeding every time I had a bowel movement. Hopefully you won’t have this issue.
I had radiation and 5 brachytherapy.
Forgot to mention I started using a dilator 6 weeks after the radiation that was in 2016 and I am down to using it twice a week now. When I first started I was using it everyday, it depends whether or not you have a sexual relationship?
@naturegirl5 - thank you for your helpful comments and suggests. I’m so glad God lead me to this group you all have been very helpful. It’s hard navigating cancer diagnosis and following your doctors recommendation. I’m ok just waiting for my oncologist surgery follow up appointment & then brachytherapy end of Dec. had no issues with surgery
Hope you are doing well!
Thank You!!!!
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1 Reaction@paz1956 I don't have any long term side effects from the brachytherapy. I don't have any urinary output problems or incontinence. I purchased a set of dilators that allowed me to start with a narrow one and gradually increase the width over time.
Intimate Rose Dilators:
-- https://www.intimaterose.com/collections/vaginal-dilators
Yes, the cancer diagnosis in a sense is just the beginning of the process. There is lots to do following diagnosis and treatment to keep yourself healthy.
How are you feeling today?