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

@terradean That is a lot to handle. No wonder your head is spinning. Did your oncologist explain why you will get more radiation sessions than you were originally told?

Were you first diagnosed with uterine cancer two years ago? What kind of uterine cancer were you diagnosed with? So now two years later is it the same kind of cancer that came back (a recurrence)?

In my case I was diagnosed with endometrial cancer (endometrioid adenocarcinoma, FIGO Grade 1) in 2019. I had a radical hysterectomy in 2019 that took also the ovaries, and fallopian tubes and cervix. There was no cancer anywhere else. I had a recurrence in late 2021 of the same cancer that showed up as a small lesion on the vaginal cuff.

Cancers are not all the same so the treatments will be different depending on the kind of cancer. Is it possible that your oncologist is making sure that they get as much of the cancer cells as possible?

@rainyp How are you doing? So, no more surprises which is good. Have you started the radiation therapy as you expected on 10/10? How are you feeling?

And have you brought home a doggie companion yet? 🐕

I started having bleeding 5/22 with alot of pain, received diagnosis 6/27/22, hysterectomy wasn't till 8/29, no ovary, fallopian tube or node involvement, wasn't in cervix. However, wash had adenocarcinoma cells in the wash, nothing found anywhere else. But, they are reacting like the cells have gone everywhere and treating the extreme way now from reading. Worries me about the radiation causing further problems years down the road.
Asked if after chemo is done whether, radiation treatment could change, and question re: wasn't taken very well.

I started having bleeding 5/22 with alot of pain, received diagnosis 6/27/22, hysterectomy wasn't till 8/29, no ovary, fallopian tube or node involvement, wasn't in cervix. However, wash had adenocarcinoma cells in the wash, nothing found anywhere else. But, they are reacting like the cells have gone everywhere and treating the extreme way now from reading. Worries me about the radiation causing further problems years down the road.
Asked if after chemo is done whether, radiation treatment could change, and question re: wasn't taken very well.
So, was told 25 external, 2 brachy to be done after chemo of 6 rounds 3 weeks apart,

Everything has been this year 2022, started bleeding mid May, urgent care sent referrals to urologist and gynecologist however gynecology called me and said would be mid July since wasn't emergency. I started with a new primary care end of May and she said your not waiting that long. Got me into Women's Health Center. Grants Pass, Or, where I live, the Dr. there saw me 6/1/22. He setup up hysteroscopy 6/27, he was going to remove most of the fibroid, however found endometrial adenocarcinoma was where the bleeding was coming from. He scheduled me to go to Eugene, Or Williamette cancer center there. They did not schedule hysterectomy till 8/29 this year, I was told FIGO 1, however, lesions on the serous s o was changed to 3A and said when they did wash found adenocarcinoma cells in fluid. So, at 2 week post-op was total 3 chemo 8 radiation 3 chemo and then 2 brachy. However, since Eugene was so far away and family wanted me to have treatment in this area not so far away. The Dr. from up there contacted Drs' down here. When I tried to check on treatment with her up at Williamette I am being told that the radiation person chooses treatment plan and he says direction came from them. And, seemed irritate that I would question what he was saying to me. My son is going with me Monday to Chemo and plans on asking alot of questions, I guess I would feel better if there was something they really found somewhere rather than being so drastic immediately after the hysterectomy. Its like going from A to Z in 5 months. But, will be asking more questions for sure.

Started radiation on the 14th ( thanks to you no surprises ) and Chemo the following day. Lots of nauseousa and fatique for a couple of days. Now in over one full week and feel surprisingly good. Sleeping alot. Eating lots of small high calorie snacks and meals throughout the day. No desire to really do anything but I am going to make a point to do some yoga and walking everyday. The puppy is going to be my prize when I get through this!
I do have question as one one of my doctors mentioned doing immunotherapy after. Wondering if this is a common follow up plan?
Hope you have a happy and healthy day! Thanks for checking in!

@rainyp. Thank you for checking back in here. You've been taking good care of yourself with lots of sleep and good nutrition. Yes, walking every day and doing yoga will keep you feeling even better. That's what the radiation oncologist told me and I'd like to think that helped. But then I did not have the chemotherapy infusions so you have more to deal with than I did.

Cancer treatment is so individualized now and oncologists have a lot of tools to rely upon. Immunotherapy may indeed be a common follow up plan that may not have been there only a few years ago. It's amazing to me how many advances happy almost daily with cancer care and treatment. I'm curious what your doctor tells you when you ask about immunotherapy.

And then is bringing a dog home a common follow-up plan too? Tee-hee. 😀

I hope you have a good day too and the weather is just right for you to talk that walk today.

Will you check back in here tell me how you are doing during the next week?

@terradean. Oh goodness, you've really "been though the wars" ( experienced difficult emotions and conditions) if you know that expression. I've driven through Oregon a few times but that was many years ago so I don't recall the distance from Grants Pass to Eugene. It does seem as though the radiation oncologist in Williamette has little interest in coordinating your care but that's a good question to ask the oncologist directly yourself when you are seen there again. It's good that your son is going with you because as you wrote he can ask questions too. It's a good idea to have a loved one present with you during your appointments. What you are going through brings up such stressful and anxious emotions. This means that when you're talking with the oncologist you might miss important pieces of information because you are in that high emotions state. Your son can help with that and take notes for you. Ask your son to sit down with you and write your questions and his down on paper. That will help both of you to focus and will make the appointment go better.

If you need to you can take a day or two or more to make your decisions on what treatment plan you want. I did that with my radiation therapy plan and my radiation oncologist was fine with that.

Will you please come back to Mayo Clinic Connect and let me know what your oncologist says? And what treatment plan you choose?

I'm dismayed by all the delays you experienced in Grants Pass before you were seen and diagnosed.

@terradean. That sounds very stressful to be getting confusing information from different directions like that. Have you tried looking at the pathology reports for your hysteroscopy and hysterectomy specimens in the hospital's patient portal? Those reports should state directly what the oncologists are looking at to make their treatment decisions. Some things to look for are
1) the type of cancer and Grade. On my pathology reports, this is near the top under "Final Diagnosis". Mine says "Endometrial adenocarcinoma endometrioid type FIGO Grade 3." Grade is an indication of how much the cells in the tumor look like normal endometrial cells under the microscope. Grade 1 means they look pretty similar to normal cells, which usually means the cancer is less aggressive. Grade 3 means they don't look much at all like normal cells, which usually means the cancer is more aggressive. There can also be different types of cells such as "serous" or "clear cell", which is a different from "endometrioid". These other types are all Grade 3.

2) the Stage. On my report this is closer to the bottom under "Synoptic Report". Mine is "FIGO Stage (2018 FIGO Cancer Report): IB: Invasion equal to or more than half
of the myometrium." The stage is an indication of how much the cancer has spread. From your description, it sounds like yours is IIIA, which the American Cancer Society website defines as "The cancer has spread to the outer surface of the uterus (called the serosa) and/or to the fallopian tubes or ovaries (the adnexa) (T3a)."

You can also look at "Lymphovascular Invasion" which is also under the "Synoptic Report" on my report and the "immunohistochemical stains" for "p53", which will be reported as positive or negative. Lymphovascular invasion means that the cancer has entered the system that carries lymph fluid. Mine was positive. p53 is a gene that when mutated (reported as "positive" on the pathology report) is associated with more aggressive cancers. Mine was positive for this too.

The oncologists use these things to determine the level of risk that the cancer has spread, even though they can't detect any tumors elsewhere in your body or in your lymph nodes. Cancer cells may be lurking somewhere and will grow into tumors later if they aren't killed with chemo and radiation now. You should ask your doctors, but your Stage IIIA is probably the main reason for the aggressive treatment plan.

I'm having chemo and vaginal brachytherapy, even though my lymph nodes were negative and I don't have any known tumors after the hysterectomy, because I have a trifecta of high grade (Grade 3), greater than 50% myometrial invasion, positive for lymphovascular invasion, and positive for p53.

I've had two rounds of chemo so far and have found it tolerable. On the day of the infusion and for two days afterwards I have felt pretty good, and would have been able to work my desk job if I hadn't already quit. (This is probably because of all the other drugs they infuse like steroids and anti-nausea meds). I'm not sure about a job on your feet. The next 2-3 days I felt very tired, was uninterested in eating, and would not have been much good at work. But after that I felt fine again. Something about the chemo gives me brutal constipation, and I'm still trying to figure out how to use Miralax properly. My hair started falling out after 2 weeks, and now at almost 5 weeks, it is very thin with lots of scalp showing through. I'm looking forward to this being over.

Good luck to you.

Their revision on 9/12/22 states FIGO1, however 100% Myometrial Invasion, Uterine Serosa involvement: present, Pertinoneal / Ascitic fluid: Present No lymph, no ovary, no tube involvement
PATHOLOGIC STAGE: pt3A
Endometrial adenocarcinoma, G1-2, at serosa full invasion
I think at this point will just ask alot more questions, but seems I get the max, because malignant cells in peritoneal area wash from lesions on serosa. And, could be going everywhere in my body to spread, so my body will be punished fully now with max treatment right away