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Anyone with UPSC Stage 1A who chose not to have Chemo?

Kdrichards
Posts: 8
Joined: Aug 2013

Hi! I was recently diagnosed with UPSC and am 4 weeks post radical hysterectomy. My pre-op CTs were negative as we're all the lymph nodes, and other biopsies done at surgery. I had had a D&C and polyp removal 1 month prior to hysterectomy which established the diagnosis. Originally my surgeon interpreted the research for my stage of the disease as not requiring additional therapy, but he re- read the paper while preparing to present me at Tumor Board and called me last Friday to recommend the Chemo. I go to see him him this afternoon to receive my new prognosis and decide if I will go ahead with Chemo. I have read many of your posts and the neuropathology issues and Chemo brain cause me concern. I have some nerve impairment in my left leg from a herniated disc at L4-5 and from the surgery.  Still have an area of numbness on my left arm following surgery as well. He is recommending a 2 drug / wek; 3 weeks on/ 1 week off for 4-6 cycles. I have been having a really hard time warping my head around this change in direction. I was going back to work full time next week but that may all change now.

So I was just wondering if anyone had opted to not take Chemo. He does not intend to do Radiation. I probably had a history of PMB for several years before they discovered the polyps and 2 years before any intervention was done.

Any advice would be appreciated.

Kathy

Hybridspirits's picture
Hybridspirits
Posts: 152
Joined: Nov 2012

i have stege 1A and the final diagnosis was grade 3 not USPC,  however until the second and third opinions came in to review the USPC versus grade 3 Dana Farber had suggested Chemo and consult for raditaion after chemo.  The reason was that USPC is an agressive cancer and unpredicatble.  While they don't see anything other than what they took out it is the microscopic cells they are looking for.  Even when they finally confirmed mine wasn't USPC but only grade 3 chemo was suggested.  It is considered adjunct at this time.

 

i hear you on the side effects.  I was also scared and looking back while each time there was something I got through it and now with the last chemo on 4/18/2013 I am really feeling great.

i would imagine you could request to opt out of chemo and if you do you might want to discuss with your dr the role the chemo is playing so you know the risk you are taking.  ie adjunct versus actually eliminating something known to be there

i also have numbness in my upper thighs on both legs from the surgery and chemo did nothing to this.

hopefully this helps

Sharon

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

I also had numbness in my left upper thigh after surgery.  It is resolved but it took nearly a year.

Hybridspirits's picture
Hybridspirits
Posts: 152
Joined: Nov 2012

it is encouraging to know that it resolved within a year.  Thanks for sharing that

Kdrichards
Posts: 8
Joined: Aug 2013

I also have numbness from the surgery in my left thigh, left lower abdomen and a strip on my left lower arm above the wrist. I understand it is from the positioning for the Robotic surgery and mine lasted nearly 5 hours. It is improving but it is encouraging to hear that it may actually go away eventually.

Kathy

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Have you read your operative reports?  The positions they had us in were something else.  Gives me a headache thinking about it.  Glad I didn't have to watch!

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