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Uterine Papillary Serous Carcinoma (UPSC): any others here???
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Oct 26, 2008 - 1:24 am
I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer. |
Joined: Mar 2013
I've had one chemo and will have 2nd brachytherapy this week. I was diagnosed Stage IA and have 2 more brachytherapy and 2 more chemo. I had a very achy foot for 3 or 4 days about 4 days after chemo. They gave me pain medication that took care of it. I think I'm going to shave/clip my hair myself and not look at myself until I think I can handle it. I'm not worrying about it, though I JUST finished growing all the color out of my hair when I got the diagnosis. I have a pretty wig. It's stuff we have to do so I guess we might as well do it, huh? I'm being treated at the University of Iowa hospitals and they have been wonderful.
Joined: Jun 2012
I, too, had just finished growing the color out of my hair when I was diagnosed. I decided that at least it allowed me to compare per and post chemo hair. It was exactly the same before and after unlike the experience of so many of you. However, I am currently visiting family in SE ohio and my hair becomes more wavy and actually curly in the summer months here.
Joined: Feb 2013
Just wanted to share that I got my PET results today and it shows no metastisis! Surgery scheduled for 2/19---I am believing this is a very good sign that we have caught it early.
Rebecca
Joined: Dec 2009
Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago. I have had 18 months of chemo and 45 radiation treatments. I am currently in a clinical trial as I have a thrid recurrence. The good news is that I am doing okay, still working full time and able to handle the treatment. It's so important to stay as positive as possible, and to live each day to the fullest. Friends, activities, artwork, church - these are all things that have helped me. I talk to my cancer (your lease is up! I want to evict you!!!) I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com. Let me know if you need any other thought or suggestions. My thoughts and meditations are with you!!
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Joined: Jan 2013
Good luck with the clinical trial. Where can I find information about it? - Rudy
Joined: May 2013
Your comments are so encouraging. I just got my dianosis of stage 2 UPSC yesterday but didn't have any idea what it was until I went online to look it up. I am shell-shocked. My doc had told me when he first examined me that he could probably just remove my uterus and I would have a great life thereafter. That was before the biopsy and PET scan. This is a very serious and aggressive cancer. I am still in shock. I am 67 and My husband, friends and family have been very supportive. My faith is strong and I will continue to have faith that everything will turn out OK in the end.
Joined: Mar 2013
Hello everyone. I went through menopause early (40). Every thing was going fine until 6/2004 when I started bleeding. After 12 years I knew this was bad, set up gyn appointment for 7/2004. She did a uterine biopsy ( which by the way, hurt like hell!). The pathology report came back in one week, the big "C", bummer. Met with oncologist 11/2 weeks later, hysterectomy 8/28/04. The pathology report from surgery said " endometreoid carcinoma AND high grade serous papillary carcinoma". Had a horrible time with incision not healing ( didn't completely close for 4 months). End of Sept I started 3 once a week internal radiation treatments. The onc nor his nurse could tell me exactly what to expect boy was that an eye opening experience! Then I started chemo. Onc had originally verbally said 8 monthly treatments, 2 weeks before I started the " chemo councilor" gave me papers that explained what drugs I would be given. This sheet said 6 treatments. After only 4 treatments onc stopped them without any explanation. 2 weeks after my 4 month checkup the onc called " I am soooo sorry, the cancer has returned......." The cancer was in my vagina this time. Not a happy camper! I endured 25 external radiation treatments, even though I received 2nd degree burns inside and out. The following week I started 3 more internal radiations. They REALLY should have done the internal first! This procedure was uncomfortable and embarrassing the first time but now with the radiation burns it was almost unbearable. My last treatment was in 2006 but I am still seeing the onc because of the permanent damage caused by the radiation. The onc had to switch to a pediatric speculum a couple of years ago and last year she couldn't use one at all. Sex is out of the question now and I have severe problems with my bowels. I wish my journey had been a lot smoother. The onc still does a pap ( without the speculum). I told her I didn't expect to have cancer come back there, it has become a burn't pot roast! If I were a cancer cell I'd find a nice juicy T- bone somewhere else on my body!
Joined: Dec 2012
I am so happy to see your post but so sorry for the horrible time you have had. Know that your ordeal has given me hope to live 8 years and not let this beast of a cnacer win. We are here to kick its ugly self out!! best wishes for you always.
Joined: Nov 2011
Hi, Glad you are 8 years out. Sorry for your burning. I had internal radiaiton and also had some burning. I would be interested to know what stage you were when they originally diagnosed you? Thank you..God Bless