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What Should I Really Expect During Treatment?

Pat51
Posts: 111
Joined: Feb 2011

Hi,

I was diagnosed with UPSC and had my surgery last Friday. I had my cervix, uterus, fallopian tubes, ovaries, omentum, appendix and lymph nodes removed and had 5-6 boipsies done throughout my abdomen and peritneal washing. I received the surgical staging results yesterday, Stage 1B. I was told that there were no cancer cells in the peritneal washing and was told that the boipsies and nodes were negative, but that the tumor was in the inner 1/2 of the uterine wall making me stage 1B. My GYN told me that he talked to a oncologist and that I would need to have chemo and radiation done. I am grateful to have a much earlier stage than I originally anticipated. I have appointments with two oncologists next week. One is an gynelogical oncologist. I want at least a couple of opinions since this is a rare cancer.

From what I read, I can expect probably carboplatin/taxol chemo and some form of radiation. However, as I said, I have not spoken to an oncologist about specific treatment yet. What have other women experienced as far as side effects from treatments are concerned? Were you able to work and tolerate chemo and/or radiation at the same time?
Are there side effects from radiation? Should I expect to lose my hair? If so, how long before it returns? Can anyone give me an idea of what I have in my immediate future?

I have read articles on internet regarding this cancer but do not know exactly what is accurate and what is not. I would appreciate any answers, as I am not very well informed about this type of cancer, but I am trying to educated myself.

Pat

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I had the same diagnosis, same surgery (except I had said goodbye to my appendix many years before) - lymph nodes, washings, all negative. I was given the carbo/taxol chemo regimen, but no radiation - and in 5 days from today (or is it 6? my surgery was on Apr 29, 2008), I celebrate 3 years since my surgery and dancing with NED !
I chose to stay out of work for 6 months, from the time of my surgery until after chemo, due to the fear that I would not be able to work and my finances would take a hit. In retrospect, I physically could have worked, except for the day of chemo and maybe a day or two following, but I'm glad I was given the opportunity to just concentrate on "me". (I read something early on in my journey: "You have once chance to heal right the first time" and took that as my mantra). Some people, however, find the everyday normalcy of going to work soothing, emotionally, but must be careful of overdoing it on the "good" days.
I lost my hair about 2 weeks after starting chemo, ended up bald as an egg all over. I had a little problem with foliculitis (red, itchy, painful bumps on my scalp), but I treated them with antibiotic ointment and they went away fairly quickly. I had mild neuropathy in my fingers, but I guess the worst was on about the 2nd day after each treatment, I felt like I had the flu...and my ankles felt like someone had beaten them with a lead pipe - this also passed in a day or so. I paid attention to nutrition and hydration and I did not suffer from any bad nausea and my appetite was good. (maybe too good, I actually gained 30 pounds, heh) One important tip, though…don’t let yourself become dehydrated and/or constipated. My Dr. suggested a regular regimen of stool softeners, which worked for me.
I’m glad you’re seeing a couple of different Drs regarding your treatment – it’s important to arm yourself with knowledge and feel you’re in the best hands. I wish you the very best in your journey and am glad you’ve come here with your questions – as I’m sure you’ve noticed, this place is chock full of knowledge, love and support from an amazing group of Warriors.
Love,
Cecile

Pat51
Posts: 111
Joined: Feb 2011

Thank you so much for your reply and the sneak peak of what is likely to come for me. I do not know at this time if I will be able to have time off from work while I go through treatment. Since this diagnosis was somewhat of a shock, as I am sure it is for most of us, I am still learning to adjust to the prospect of these treatments. I only hope that I can gather enough strength to endure the necessary treatments. You have given me hope knowing that you DID the treatments and have attained NED status. I also hope that I can be as fortunate as you have been to retain NED status.

Pat

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