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Newly Diagnosed

Susie Ree
Posts: 1
Joined: Nov 2010

Hi Gals, WOW this is a great source of information! My Mom is 70 years old and was diagnosed with uterine serrous papillary carcinoma and had surgery July 1st 2010 at Mayo Clinic. She had the HUGE surgery removing uterus, ovaries, appendix, ommentum and 40 some lymph nodes with pelvic node involvement, staged at 3C. She recovered well and is currently receiving Carbo/Taxol awaiting her final 6 of 6 treatments. (YEAH!) Her question is WHAT NEXT?? She lives in rural North Dakota ...what has everyone heard about radiation? She is leaning toward NO radiation because of the controversies. Any thoughts? Also, she still has pelvic edema since surgery, any suggestions as to how to help this? Thanks and again you all are so brave and wonderful to share all of this with us!!

llight
Posts: 99
Joined: Feb 2010

Hi Susie,

I'm sorry to hear about your mom's diagnosis. Sounds like she's doing fairly well considering everything she's been through.

Radiation consideration is really something she needs to talk to her oncologist about. Some onc's recommend, others don't. Mine did not. The thing to consider about any treatment is whether the possible risks outweigh the possible benefits.

Please keep us posted.

llight

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Once uterine cancer recurs, there is really no cure, so you really have to do everything your body can handle to make sure you do not recur. I would suggest that your mother at least have bracytherapy. I was 3C UPSC and did the 6 carbo-taxol rounds, 3 brachys, and 28 rounds of external pelvic radiation, but I still recurred outside the radiation field (in a lymph node inside my armpit of all places!). So I don't feel I'm in a strong position to advise. But I will say that I take some comfort in knowing I did everything I knew to do to try and keep myself recurring and so don't have to lay awake wondering 'what if'.

(((hugs))). With UPSC, it's a crap shoot. But the most common place of recurrrence used to be at the vaginal cuff, until women started to get brachytherapy adjuvently. Now, with UPSC, you are as apt to recur DISTANTLY as locally, and you can't radiate your whole body, so you have to trust your oncologist, get a 2nd opinion, and then make your best guess.

One last note: I recurred a year ago this month and have been in chemo almpst constantly since then. But I still enjoy a wonderful quality of life, with no real side effects to complain about. It's all do-able. Scary. But do-able. (((hugs again!))))

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Susie,

I was diagnosed with UPSC Dec '07 and staged at 4 after Jan '08 debulking surgery. Neither my gyn-onc nor my med-onc recommended radiation, just the carbo/taxol chemo, 6 rounds. I'm currently in treatment for a recurrence in para-aorta lymph nodes found in Sept '09, which have resolved per recent CT/PET scans. No radiation rec may have been because I was Stage 4 and it was already out of pelvic region. Each case tends to be handled on an individual basis as far as the treatment details go. The pelvic edema may be due to lymph node removal and need to be addressed thru lymphedema therapy - something to ask doctor about.

The other issue she may have to deal with is in regard to her WHAT NEXT? question. After dealing with such an overwhelming experience of surgery and chemo, and feeling quite vulnerable that this insidious disease made its way around our body, 'doing nothing' can be equally as hard to handle. There is a feeling of having a safety net around us when in treatment, that is suddenly gone when it's over. However, one's status is usually monitored at regular intervals with physical exams, ca125 blood tests and CT/PET scans.

Glad to hear she is recovering well so far. Hope this helps.
Annie

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