UPSC: full abdominal/pelvic radiation? - safe enough?

evertheoptimist
evertheoptimist Member Posts: 140
in Uterine/Endometrial Cancer #1
I have been diagnosed at UPSC 4B by my doctor (though pathologist is of the opinion that it's ovarian 3C).

In general, ovarian patients are not getting radiation as part of the front line therapy for extra security measure. When the chemo is over, if the patient goes into remission, they go into surveillance mode with out further treatment.

however, I hear that UPSC patients are getting radiation treatment after successful chemo treatment (meaning, CA125 normal, and no visible sign on CT or PET scan).

I had sub optimal debulking, and cancer nodules were spread all over the pelvic/abdominal areas (nothing beyond diaphragm, and nothing in the liver). My gyn onc does not think I should get whole abdominal/pelvic radiation since the risk of such an extensive area for radiation is beyond threshold. A good friend of mine, who is a ob/gyn in Manhattan is of the same opinion. But, she will connect me with Mt Sinai and/or Sloan Kettering doctors for second opinion.

Is there anyone who got a whole ab/pelvic radiation? If so, what was your doctor's opinion about the risk? How many weeks of radiation did you get? How long was each session? Any serious side effects?

I am done 2/3 of the chemo now, but I would like to have all the facts and opinions so that in case I need radiation therapy, I can make a decision and follow through right after the chemo is over (early May) rather wasting a couple of weeks in between chemo and radiation.

Thank you in advance for your kind help.

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #2
    optimist
    I was diagnosed with UPSC - initially staged 3a. After my initial 6 rounds of carbo/taxol with a clean PET and low CA125, my doc did NOT recommend abdominal radiation saying, "I don't think it is worth the risk...most recurrences are in the vaginal cuff and I have 90% cure rate for that".

    I think this approach is the exception rather than the rule for most who have posted here. Seems like most docs recommend radiation however the NCCN guidelines list as optional. The wisdom of irradiating a wide area without a specific target "just because" is totally lost on me. I have read that once an area is radiated it can't be repeated (don't know if this is 100% accurate). I was comfortable in the decision not to radiate and have never regretted it. In hindsight, it was the best thing for me.

    I did have recurrence but in supraclavicular lymph nodes and had radiation and chemo for that. I am starting to feel some radiation damage to the blood vessels in my neck. I personally am more frightened of the radiation than chemo.

    I'm glad you are doing well with your treatments. Good luck on your decision-making. I wish you well. Mary Ann
  • upsofloating
    upsofloating Member Posts: 466 Member
    #3
    I was stage 4B, UPSC, and my
    I was stage 4B, UPSC, and my gyn-onc and med-onc did not recommend radiation. If I recall correctly part of rationale was save it as a later option if needed. I was NED post surgery and standard chemo protocol. I did later have recurrence in 2 para aortic lymph nodes; treated with second-line chemo.
    A key issue for you would be success of your current chemo treatment but it never hurts to have checked all options so as to be proactive in treatment in as timely a manner as possible. Best wishes for great success with current regimen.
    Annie
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    Optimist
    I was diagnosed with UPSC Stage III-C. I did have the sandwich treatment with chemo every 3 weeks. I had 28 treatments of pelvic radiation with IMRT. Then I had a radiation implant for 28 hours. Then I finished with my last 3 chemo treatments.

    I did have to wait the three weeks after my 3rd chemo to start radiation. And then waited 3 weeks after radiation before my 4th chemo. I did not have any significant side effects while having the radiation. I did have some nausea and being tired, but no bowel issues.

    I still do not have any long term effects from the radiation. I finished it 5/09.

    I did start chemo again in 2/11 for recurrence in 4 lymph nodes. My CA 125 started rising right after my last chemo which I completed 8/09.

    I too was told that once you have radiation to an area, you can not have radiation to that area again. Good luck with your decision regarding radiation. I hope you continue to tolerate your chemo well. In peace and caring
  • denyingarea
    denyingarea Member Posts: 11
    #5
    Radiation not recommended for UPSC w/suboptimal debulking
    My mom is also UPSC stage 4 suboptimal debulking. The NCCN guidelines do not recommend radiation after chemo when a patient was suboptimally debulked. I haven't found enough research to backup why, but it does seem to be a risk/reward calculation for the volume of radiation that would need to be applied and saving it as a recurrence option when there is less volume.

    btw, if you don't already have them the clinical guideline is here http://www.nccn.org/professionals/physician_gls/pdf/uterine.pdf (free registration required)

    One other thing of note on that NCCN guide is the recommendation of cisplatin/doxil for recurrence. I see so many OVCA go Doxil alone, so it's definitely something we will be notig for the a future conversation with my Mom's doc, (as she is currently not NED on after initial first-line chemo).

    These small differences in the treatment protocols interest me. Because as much as the doc says UPSC is just like OVCA, we treat like OVCA, the giant gap in the survival rates between UPSC IVb and its correlate OVCA IIIc, seem to indicate that maybe there is a little difference and a need to be a little more aggressive.
  • lkchapman
    lkchapman Member Posts: 106
    #6
    Hi,
    I had stage IIIc UPSC and received extended field XRT plus 3 vaginal brachytherapy treatments ending in April 09. The cancer had spread to a para-aortic lymph node. I have had few major side effects and would do it again if given the choice.
    Good luck with your treatment.
    Laura
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #7
    lkchapman said:

    Hi,
    I had stage IIIc UPSC and received extended field XRT plus 3 vaginal brachytherapy treatments ending in April 09. The cancer had spread to a para-aortic lymph node. I have had few major side effects and would do it again if given the choice.
    Good luck with your treatment.
    Laura

    IMRT Radiation
    Hi!

    I had sandwiched therapy-three chemos, 25 IMRT radiations, and three more chemos.
    I too had cancer that had spread to para-aortic lymph nodes-they removed those during surgery, but the area was included in my radiation plan.

    Good luck with treatment!

    Cindy

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