Diagnosed March 2023 Uterine cancer

Kimmie70

Good morning! I am 52 y/o and was diagnosed with uterine cancer on March 6 and had surgery on March 30, totally hysterectomy. My doctor thought my stage was a 3, but talking with the oncology board it was staged at a 2 grade 1. I am needing vaginal radiation soon. I am very scared of this and terrified of the side effects. Has anyone had this done and any advice going into this??

Thank You,

Kimmie70

Forherself

Good morning Kimmie70. Sorry you are having to deal with this. I just wanted to clarify that is stage 2 grade 1? Grade 1 in the least aggressive so it makes a difference, a good difference. There are lots of women here who have had brachytherapy, which I am assuming is what you are going to have. You can search for that word on here to find comments. You will find lots of good advice here, and support from women who have gone before you. Don't look at studies that are old. Treatment has improved greatly.

BluebirdOne

Welcome Kimmie70.

I concur with Forherself. I had brachytherapy and was terrified initially of the radiation. The procedure itself is a bit embarrassing but everyone on my team were very professional. I did not experience any pain beyond a mild discomfort during the three sessions I had. My biggest worry was side effects but since my cancer was Grade 3 serous, the aggressive kind, I did not want to take a chance of recurrence. My side effects are minimal, mostly relating to having irradiated vaginal tissues, I had some minor bowel issues for a few days. That's it. I am almost five years from my treatment and so far nothing has come up due to the radiation, and I have not recurred. I think of all the things that I agonized over and had deep anxiety about, brachytherapy turned out to be the very least of my issues. I can only speak for myself, but I also encourage you to read our comments about brachytherapy. They are quite extensive and detailed with many of us telling our experiences.

I also forgot to mention that many of us suffer from lack of estrogen, especially after having our ovaries removed. This lack of estrogen can also cause UTI's, organ prolapse due to tissue weakness, urinary incontinence, etc. My tumor was not estrogen dependent, (serous) so I was prescribed a cream estrogen which has helped a great deal with my irradiated tissues. If you have endometrioid, or an estrogen dependent tumor, you won't be prescribed this cream. I don't think enough folks know about it.

Denise

NoTimeForCancer

Kimmie70, try to take a breath.

Like you I had a very hard time wrapping my mind around radiation, and while the option was always mine to make if I wanted it, I decided I wanted to do everything I could to beat the beast.

I had both external and brachy (internal) radiation. The brachy followed the external so it did make me extremely tired and I needed to make sure I was eating enough protein. Just to share a dietician at the cancer center told me 7-9 servings a day, but an egg, an ounce of cheese or nuts, each counting as one, added up pretty quickly. If you are a yogurt fan there are good, higher protein ones out there and a single serving counted as one, and it was good for your gut to boot!

I did have vaginal stenosis after the brachy, and they do give you dialators to use. Often described as a candlestick, they will tell you three times a week for 10 min, but one lovely lady here had shared years ago to do it every day for 10 min. I started with a medium and they gave me a large, and it was a challenge, but I was determined and every day it got easier. Here, 10+ years out I can get away with doing it once a week but it took me awhile to get there.

I have not experienced any side effects that I can notice, but we are all different. Again, please try to take a breath. I can remember exactly how it felt to have to try and deal with all the information and it can be overwhelming to say the least.

bav

Hi Kimmie70, welcome.

I'm 55 and finished radiation about 6 weeks ago: 25 sessions of external and 4 sessions of brachytherapy. I had nausea (prescribed ondansetron, which resolved it if I took it regularly), bouts of diarrhea, and fatigue. I was able to continue working and drove myself to all appointments - which I mention just to say that I found the physical side effects manageable. I often felt worst a couple hours after the treatment, and so could plan my day around that. I too was told to increase protein intake, and of course drinks lots of water. I was given lidocaine to insert prior to the brachy sessions -- which I appreciated. The psychological parts were harder for me -- but it helped to notice and appreciate the competence of the nurses and techs, and have a daily routine for myself. I started feeling stronger about 3-4 weeks after the radiation was finished... I'm now using a dilator, on leprozole, and getting familiar with the range of possible side/long effects. While my prognosis is ok, it has taken time to adjust to all these changes. I try to take one day at a time and try not to "flood" myself with the many uncertainties of this disease.

zsazsa1

I had external IMRT pelvic radiation targeted at the lymph nodes and vaginal cuff, since I had uterine serous (stage 1, but I also had isolated tumor cells found out in one of the two sentinel nodes sampled). I wanted to do everything I could to prevent recurrence of uterine serous/clear cell, which is highly aggressive, metastasizes easily.

The biggest problem that I had was horrible diarrhea. At the recommendation of someone on here, I began a probiotic (Culturelle, over the counter) and it helped significantly. I then found out that if you start it a week before radiation, it helps even more.

I would recommend beginning Culturelle a week before radiation. I had my sessions in the morning, and I would not eat until after I'd returned home. Then I would eat and take the Culturelle.