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I am newly diagnosed with UPSC.

DoonyL7
Posts: 33
Joined: Sep 2012

Hello All,
I was diagnosed in July with UPSC StageIIIA Grade 3. I had positive margin and abdominal fluids positive for malignacy. I just finished first round of chemo and am awaiting schedule for radiation. My radiation oncologist tells me atleast 7 weeks external and 3 treatments of internal. Is there anyone else out there with this uterine cancer?

cheerful
Posts: 127
Joined: Apr 2011

Hi Becky:

I was diagnosed with Stage 1 of UPSC after a hysterectomy in February of 2011. I had 6 months of heavy bleeding and I saw my gyn a few weeks after I started bleeding and had a couple of tests done and then I pushed for surgery so I had the surgery done the very beginning of Feb. of last year. I also took Iron pills to help with the blood loss from the bleeding and took it for several months after my surgery and it helped to make me feel better.

The cancer was not found until I had the surgery. I suspected that I had cancer from the beginning. While I was in the hospital I met with an oncologist who my gyn recommended immediately and I met with the oncologist as soon as I was diagnosed with cancer. I later saw my oncologist a couple of weeks later and from the pathology report it was found to be UPSC. Originally, my gyn thought I had adenocarcinoma, but after the report it was UPSC.

My oncologist is one of the top doctors in the country. I live in the suburbs outside of Phila., PA. I am 61 years old now and I was diagnosed with UPSC at the age of 59. My oncologist feels I will survive this cancer since he said based on the histology, my age and also he said I have few medical problems so that was really reassuring and very comforting to know. My cancer was a large polyp. UPSC is a very scary diagnosis though. There is a lot of information on the Internet about UPSC that is outdated, but there is also more recent information on this rare disease as well.

From what I understand, the first 2 years after diagnosis this cancer can come back and it is most likely to occur within the first two years although you really have 5 years. In my situation and stage, I have a 15% to 20% chance of this cancer coming back. So far, I have no evidence of disease for which I am very grateful. I just scheduled my blood work and cat scan in the upcoming weeks since it was 6 months ago that I last had one done. I am hoping that I will continue to remain NED for now and in the future. I have learned to live one day at a time and enjoy each and every day that I have.

I would not jump to any conclusions until after your Mother has the surgery and the oncologist has the pathology report for staging. He will be able to guide your Mother. I went through 6 rounds of chemo (carboplatin and taxol) and lost all my hair which is a major side effect. My oncologist recommended Very aggressive treatment. I felt it was only temporary to lose my hair and as of now over a year later my hair has all grown back, it is a different texture though. The chemotherapy and radiation mostly all women have these treatments that are diagnosed with UPSC no matter what stage they have.

As far as the side effects are concerned with the chemo, I had constipation, I also had a Neulasta shot and a blood transfusion after the 5th chemo treatment as my platelets and white blood cell count were very low. The blood transfusion helped me out a lot and so did the shot. Your oncologist will also prescribe medication to be taken after your chemo treatments to help with nausea. The nurses at the hospital where I went in the suburb of Phila. also gave me three pills of nausea medication before I had the chemo. I also could not take a steroid as I have hyptertension so they gave me another drug before I had the actual chemo. Your mother should expect to spend most of the day getting chemo at least from around 9 or 10 a.m. to 4:00 or 4:30 p.m. She will have to go every 3 weeks for a chemo treatment. Most of the chemo drugs that are used are carboplatin and taxol although there are other drugs that can be used, but carboplatin and taxol are pretty common drugs that are used for UPSC.

I finished chemo in August of 2011 and I finished my radiation a year ago in October. I also felt very tired after each chemo treatment. For the first few days after chemo, I could not eat three meals a day and I could only eat two. I feel lucky that I had minimal side effects with the chemo. I know I wanted to survive and beat this cancer and I also had great family and friends that supported me going through cancer treatments.

I wish your Mom all the best with her upcoming surgery and do let us ladies know how your Mom makes out with everything.

Cheerful

BeckyC
Posts: 11
Joined: Oct 2012

Dear cheeful( I do love that name!)
thank you so much for your kind and very informative response. It really helps to hear that information. I am dreading and looking forward to her surgery in equal measure. Part of me is so afraid to hear the outcome and on the other hand I am so desperate to get it over with. She is having the full abdominal hysterectomy - no robotic one for her - the doctor says she wants to be able to see everything in the abdomen and remove any cancer that she sees. We want that too of course but I know the recovery won't be fun. I will be alone at the hospital awaiting the results - my husband and I are separated right now and my children live out of town( they are both grown) and my 2 brothers are worthless about things like this. I am the oldest and the only girl so they want me to take care of all this tough stuff. What I am saying? This is not about ME but my mother. Thank goodness for xanax, my bible, and prayers!! Thank you for your help. I will post the results of the surgery!
Becky

DoonyL7
Posts: 33
Joined: Sep 2012

hello...
I am Stage III Grade 3...I am almost 65. Chemo for me was doable. Lost my hair on first treatment. Had some side effects with second treatment, abd pain, weakness, general run over feeling. This lasted for aprox 8 days then began to subside. Most of my real pain was from the shot they give you to encourge cell production. My hips and back killed me for days, this too subsided. I am now doing radiation. I can tell you to get some Imodium now, you'll need it. So far I am just tired most of the time. I have cut any roughage out of my diet trying to stay bland for now. I was diagnosed in June so hoping I get past the 2 year hurdle. Not thinking much past that time....L

DoonyL7
Posts: 33
Joined: Sep 2012

Hello All,
Well radiation is turning out to be awful. I have uncontrollable bowel movements. I never knew I could move so fast....I take medication for it trying to get it under control. Eventually it works however my stomach often hurts. I am also very sick to my stomach. My appetite is almost non existent. I just feel sick. I am counting days till this is over...L

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

So sorry youu are having such a rough time with the radiation. I didn't have the external type but did have five of the internal type, and I didn't have any side affects except the tiredness but even that was minor. Are they giving you nausea meds?You are going to MD Anderson,right?They gave me Zofram amd Comprazine that I took for a few days, but didn't need so I stopped taking them. Call those dr.s and tell them you need something stronger. Do not suffer. They will call you in something probably local so you don't have to go in. Hope you feel better soon! Best, Debrajo

seaturtle
Posts: 41
Joined: Aug 2012

I so sorry to hear about your ordeal. A friend had those reactions, and medication did help her, so do call for stronger medication.

Re: peoples' reactions - I was sad that my best friends said "I'm sorry to hear that" and didn't mention it again. I t is as if they forgot and went on talking about their own problems. I am not one to talk about my health problems, but how much just a phone call would have meant.

Another reaction is "I'm sorry to hear that- you know, my sister went through hell with cancer." (details to follow)

I'm glad this board is here.

I hope you do find some relief.

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

You are soooo right, Seaturtle, about false friends. Out of all my friends, I had two(a couple I have known since my teens) who called to see how I was, knew my dr. schedule better than me, ect. Even a lot of close family "dropped out". So what did I learn? Treasure the ones that are still with you, make new ones, and forget the other ones exist! Best, Debrajo

beila
Posts: 97
Joined: Sep 2012

Debrajo...boy, did you hit the nail on the head!!
You expressed exactly what I have recently come to learn

Initially my support system was great
Then alot dropped out
Hard not to resent one who I considered my best friend here in toronto...she brings me presents, is great, then I dont hear from her for weeks, doesnt wish me luck before my NEW chemo (Taxol/Carbo didnt work), or ask me how I feel 2 days after having it

But I have to cherish the few who are selflessly still with me
My very best friends are a gay married couple from California, who have come to Toronto twice to take care of me, have offered to come again, and E Mail me EVERY DAY
I also have a wonderful aunt, cousin, next door neighbour who turned out to be an amazingly supportive friend, and a male friend who i have known for 10 years
So I guess that's not too bad, eh?

I have "dropped" the "too busy" ones, and am in the process of re-connecting with one or two nice people from my past

Beila

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

We all know that people have lives, families, jobs, but the one who were the most ABLE to spend a little time on the phone or email a line are the ones you just don't hear from! Family is even worse. One of my sons who lives and works in Saudia Arabia came home on a visit. First words out of his mouth,"Gee Mom, I thought you were at deaths door...you don't look like your dying"!It's the ones who are not in the best of health that MAKE the time to call that I appreciate the most. The others...well Karma can be a b&%#h! Sounds like you are doing fine with the support..send the cyber hugs big time! Best, debrajo

DoonyL7
Posts: 33
Joined: Sep 2012

Thanks Deb for your input. I am not doing Anderson but am comfortable with my doctors. My radiation treatments have been changed. I will stop external radiation next week and then be off for week 1/2. I will then do 3 internal treatments and finish with targeting external beem. Doc thought this was better for me since I have no appetite and am loosing weight. She assured me this would not compromise my treatments. I am also scheduled for chemo again after radiation and she had some concerns that I would be too depleted hense the change.
I should also tell you I have IBS so my bowel was already somewhat compromised before my radiation started. I am looking forward to the break.
Thanks again...L

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I can relate to external radiation and bowel issues...gee!! I had 33 of these little devils and by the 3rd week I felt like the toilet was beside me all day. Never had these issues prior, but surely knew to watch what I ate, too. Cramps in stomach was part of the side affects.

After treatments ended, I was so much better a month later. Today some 3+ yrs since treatments ended, still have "fast" bowels, generally when I eat lots of roughage. Part of the deal as quite used to it.

Be patient with your body as it will recover and you'll feel so much better very soon....

Jan

DoonyL7
Posts: 33
Joined: Sep 2012

Thanks Jan...Lol the toilet and I are quite chummy. I kinda feel like I am am goin stir crazy though. Am terrified to leave the house except when a necessity.
Anyway its true most of this will stop when treatment is over. If you see my note to Deb I am getting a break. I can't wait....Lorna

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