Protocol for Radiation

I am newly diagnosed with uterine cancer and will have a complete hysterectomy next week. What is the protocol used to determine if radiation therapy would be indicated? It's been determined to be Grade Two, but the staging is uncertain although we feel it was caught early. If the lymph nodes are clean, is radiation recommended?
Thanks!
Laurie

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Good luck to you. I had both internal and external radiation. The surgen recommended it and in research, it was the protocol from the net. Go to MEDlineplus.com and search for uterine cancer. you will get more information that you desire, but it was helpful to me. Good thoughts are with you.
  • Judy1957
    Judy1957 Member Posts: 5
    I was diagnosed stage 2 endometrial and stage 1 ovarian cancer. I also had a hysterectomy and later a cancer staging procedure (which came back clean). I had vaginal cuff (internal) radiation to deal with the possibility of any cancer cells from the cervical region being trapped in scar tissue. I also had full pelvic radiation because of the concern of the ovarian cancer -- I don't fit any cancer profile and am fairly young (47) so they wanted to be extra cautious in my case. The pelvic radiation didn't go well for me and I stopped it a week early. Despite the claims of 'no side effects' you should really research it before agreeing to it. We were later told that the after effects can appear up to 2 years later and may last your lifetime -- the radiation oncologist won't be treating you at that time, your GP will be. Just be informed before agreeing to do it. There is no rush. The vaginal cuff radiation went fine (I think) although there are side effects there too -- odd pains shooting up my vagina occasionally and a lot of mucus discharge. They know that the treatment can shrink the vagina and create scar tissue, so you end up with a dilator to use which is inconvenient and a bit embarrassing. Again, check it out for yourself as to if you need it, but I think out of the 2 this made the most sense for me. I wished that I had done more research and opinion gathering, but I was scared and in a hurry to get it over with. My thoughts are with you for a clean staging report, and best wishes for good decision making!
  • lauriet
    lauriet Member Posts: 6

    Good luck to you. I had both internal and external radiation. The surgen recommended it and in research, it was the protocol from the net. Go to MEDlineplus.com and search for uterine cancer. you will get more information that you desire, but it was helpful to me. Good thoughts are with you.

    Thanks, Christy! I've been researching this topic on the net like you suggested and am learning a lot. We'll know more Thursday!

    Laurie
  • lauriet
    lauriet Member Posts: 6
    Judy1957 said:

    I was diagnosed stage 2 endometrial and stage 1 ovarian cancer. I also had a hysterectomy and later a cancer staging procedure (which came back clean). I had vaginal cuff (internal) radiation to deal with the possibility of any cancer cells from the cervical region being trapped in scar tissue. I also had full pelvic radiation because of the concern of the ovarian cancer -- I don't fit any cancer profile and am fairly young (47) so they wanted to be extra cautious in my case. The pelvic radiation didn't go well for me and I stopped it a week early. Despite the claims of 'no side effects' you should really research it before agreeing to it. We were later told that the after effects can appear up to 2 years later and may last your lifetime -- the radiation oncologist won't be treating you at that time, your GP will be. Just be informed before agreeing to do it. There is no rush. The vaginal cuff radiation went fine (I think) although there are side effects there too -- odd pains shooting up my vagina occasionally and a lot of mucus discharge. They know that the treatment can shrink the vagina and create scar tissue, so you end up with a dilator to use which is inconvenient and a bit embarrassing. Again, check it out for yourself as to if you need it, but I think out of the 2 this made the most sense for me. I wished that I had done more research and opinion gathering, but I was scared and in a hurry to get it over with. My thoughts are with you for a clean staging report, and best wishes for good decision making!

    Thanks, JAG! I'm fortunate to be friends with both the gynecologist and oncology surgeon so they are doing their best to educate me and to help me make informed decisions. I appreciate your input.
    Laurie
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Judy1957 said:

    I was diagnosed stage 2 endometrial and stage 1 ovarian cancer. I also had a hysterectomy and later a cancer staging procedure (which came back clean). I had vaginal cuff (internal) radiation to deal with the possibility of any cancer cells from the cervical region being trapped in scar tissue. I also had full pelvic radiation because of the concern of the ovarian cancer -- I don't fit any cancer profile and am fairly young (47) so they wanted to be extra cautious in my case. The pelvic radiation didn't go well for me and I stopped it a week early. Despite the claims of 'no side effects' you should really research it before agreeing to it. We were later told that the after effects can appear up to 2 years later and may last your lifetime -- the radiation oncologist won't be treating you at that time, your GP will be. Just be informed before agreeing to do it. There is no rush. The vaginal cuff radiation went fine (I think) although there are side effects there too -- odd pains shooting up my vagina occasionally and a lot of mucus discharge. They know that the treatment can shrink the vagina and create scar tissue, so you end up with a dilator to use which is inconvenient and a bit embarrassing. Again, check it out for yourself as to if you need it, but I think out of the 2 this made the most sense for me. I wished that I had done more research and opinion gathering, but I was scared and in a hurry to get it over with. My thoughts are with you for a clean staging report, and best wishes for good decision making!

    I had stage 2 uterine cancer and some signs of cervical cancer (early). I had a total hysterectomy (11/6) with pelvic radiation and three internals (1/04). I suffer from fatigue, shooting leg and pelvic pains, and twinges from the vagina, most likely from the radiation treatments. My lymp and wash was clean, but the after effects of radiation suck and I'm having a hard time getting confort or helpful responses from the nurses or Dr's that did the treatments. I also couldn't find these 'potential' side effects in my net searches. I was put on Trental to help prevent 'constriction of treated area'. I have my check up in two weeks and I have a lot to say to the surgen who didn't mention this stuff.
  • grannyfranny
    grannyfranny Member Posts: 42
    I don't know if it will answer your questions, but the "Cancer Information" thingy at the top of this screen will take you to some info. on different kinds of treatment. For instance, there's a section called "Treatment Options" and another called "Treatment Decision Tools." I haven't tried the latter, but "Treatment Options" covers some of the things that people are saying their doctors didn't tell them.
  • SusanHolly
    SusanHolly Member Posts: 5
    Laurie, I think it is important to remember that each person's body is different, so radiation side effects vary. I had a hysterectomy for endometrial cancer in December and have had 21 radiation treatments so far (only 4 more to go). Thankfully my radiation oncologist didn't recommend any internal radiation treatments. The only side effects I have experienced are diarrhea, fatigue and some minor vaginal discharge. The way I look at it is the side effects are minor when I consider that not having the treatments might allow some microscopic cancer cells to kill me. Radiation treatment seems like a reasonable treatment to risk undergoing in my opinion.
  • grannyfranny
    grannyfranny Member Posts: 42

    Laurie, I think it is important to remember that each person's body is different, so radiation side effects vary. I had a hysterectomy for endometrial cancer in December and have had 21 radiation treatments so far (only 4 more to go). Thankfully my radiation oncologist didn't recommend any internal radiation treatments. The only side effects I have experienced are diarrhea, fatigue and some minor vaginal discharge. The way I look at it is the side effects are minor when I consider that not having the treatments might allow some microscopic cancer cells to kill me. Radiation treatment seems like a reasonable treatment to risk undergoing in my opinion.

    My experience was similar to what Susan describes. I turned out to have myometrial and cervical cancer, as well as endometrial. No one ever told me I MUST have radiation. The oncologist just told me the chances of a recurrence and said that radiation would cut those chances in half. I figured that this sounded like a good idea.

    I haven't asked, but I'm guessing that the high-dose radiation or HDR (AKA "internal") is given to people with cervical cancer and not to those with just endometrial. I know that the reason for delivering the high dose internally is to concentrate the radiation on just the cervix (or the place where the cervix used to be). I'm glad I didn't have the higher dose scattered all over the place. To minimize the discomfort, I'd suggest using the dilators every day before those treatments and maybe taking a pain pill before the treatments. I've read some comments about the HDR treatments being "degrading." For me, they were no worse, and maybe better, in that way than a sigmoidoscopy or a proctological exam. It probably helped that there were no men in the room for 2 of the 3 treatments and that my (female) radiation oncologist chatted and joked with me and, when things got difficult the first time, told me how to breathe to get my muscles more relaxed.

    Laurie, your surgery was to be a week or 10 days ago - how are you doing?
  • This comment has been removed by the Moderator