I am newly diagnosed with UPSC.
Comments
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surgeryjonesgrp said:Thanks
Thank you for the support! Yes I have an excellent GYN oncologist who will perform my surgery. I JUST WANT THIS SURGERY TO BE OVER so that I have the most complete picture of my status and understand what I am up against. I was actually expecting a dx of ovarian cancer because of my symptoms. I have a lot to learn about this cancer...
I had hysterectomy and staging in June. I am also Grade3. My gyn was shocked when it turned out my cancer was uterine. She swore it was ovarian and it was a surprise when she did my surgery. The only symptom I had was some swelling in my lower abdomen...lorna0 -
Also just diagnosed with stage 1aDoonyL7 said:support
I really think friends are just plain scared of saying the wrong thing. My oldest friend, I know her since I was 13, just said she didn't know how I am dealing with this disease. I told her one day at a time......
Hi all. I am hoping you can help me. I had my surgery on Sept 6 and pathology report has me at stage 1 a grade 3 with LVSI involvement. All else is negative..lymph nodes , momentum, ovaries, Fallopian tubes, cervix. My doctor wants to do the observation mode. But, I seem to see that so many with same stage are doing chemo and/or radiation. Can any of you in same situation help with information to make an informed decision? I am so conflicted. I am in San Diego with a lot of good resources but am thinking of going to MD Anderson for a second opinion. Have any of you gone that route and, if so, what was your Experience? Thanks for whatever help you can provide.0 -
UPSC Stage IIIc since July 2010
I have this beast, too. Seems there are few that have IIIc. Such a rare cancer.
I might start, because I haven't decided if the treatment is worth the further destruction of my body, my 3rd chemo (no more radiation as I have maxed out) sometime soon. Tough decision I must make.
I wish you the best of luck and hugs0 -
another realistDoonyL7 said:timid friends
hello Jan,
I really think I am more of a realist then most folks. I even told my doc that I don't need her to suger coat things. I don't need a chemo nurse to tell me bald is beautiful.
I am not offended by others comments. I know thats where they are coming from....I'm not going to tell you I wouldn't love to survive this thing. Therefor any abnormal symptom I react too immediately. I have a respect for this cancer. I give it the attention it deserves. And yes, I most often see the glass half empty....but thats just me.....lorna
Yes, I am a realist also. I have found many with UPSC at any "stage" don't really want to hear the reality that only 2% survive past 5 years. I have realized "survived" does not mean remission - it means you have not succumbed. If you read my posts I am getting very tired of beating my once strong body to a pulp with chemo, etc. to kill what doesn't want to die.
I want to survive also, but my quandary is do I have any chance at all of surviving in as a functioning person or would it just be a constant chemo search that slowly kills me instead.
Sorry. Like I said - I am a realist.0 -
UPSC
Good Morning - I am so glad that I found this forum - my mother who is 82 has just been diagnosed with UPSC - so many scary things online about this cancer. She has her hysterectomy next Tuesday ( the 23rd) so we don't know the stage yet but the gyn/onc says this cancer is not usually found until it is stage 3 or stage 4. So we are praying for stage 2 but realistic about how remote that is though I saw that some people were diagnosed at stage 1. She will start chemo and radiation about 3 weeks after the surgery. She is in great health - still works fulltime! - but I worry about how difficult the chemo and radiation will be for her. What kind of side effects have some of you had?
any words of encouragement for us? Any 3 year survivial rate information? Thank you so much for your help!0 -
treatment of stage 1SunnyinSD said:Also just diagnosed with stage 1a
Hi all. I am hoping you can help me. I had my surgery on Sept 6 and pathology report has me at stage 1 a grade 3 with LVSI involvement. All else is negative..lymph nodes , momentum, ovaries, Fallopian tubes, cervix. My doctor wants to do the observation mode. But, I seem to see that so many with same stage are doing chemo and/or radiation. Can any of you in same situation help with information to make an informed decision? I am so conflicted. I am in San Diego with a lot of good resources but am thinking of going to MD Anderson for a second opinion. Have any of you gone that route and, if so, what was your Experience? Thanks for whatever help you can provide.
My moms doctor told us that with this aggressive cancer even if it is stage 1 they do chemo and radiation. Hope that tiny bit of info helps!0 -
Stage 4 UPSCmarieinlv said:Hi, information is so
Hi, information is so helpful. Briefly, I was dx 11/10 with UPSC stage IV, surgery,chemo and ned since May 2010. I'm feeling pretty confident, and no symptoms. This board has been loaded with info, and very nice folks to talk with.
Hi - My mother is facing UPSC right now - hysterectomy next week( the 23rd) and we will know the stage then but preparing for 3 or 4. I was very glad to see that you are 2 years past diagnosis and still ned. Can you tell me how you handled the chemo? Were the side effects bad? Also - did you do radiation? My mother is 82 and has been in good health til this - wondering how difficult this will be for her! Thanks for the info!0 -
Stage 4 UPSCmarieinlv said:Hi, information is so
Hi, information is so helpful. Briefly, I was dx 11/10 with UPSC stage IV, surgery,chemo and ned since May 2010. I'm feeling pretty confident, and no symptoms. This board has been loaded with info, and very nice folks to talk with.
Hi - My mother is facing UPSC right now - hysterectomy next week( the 23rd) and we will know the stage then but preparing for 3 or 4. I was very glad to see that you are 2 years past diagnosis and still ned. Can you tell me how you handled the chemo? Were the side effects bad? Also - did you do radiation? My mother is 82 and has been in good health til this - wondering how difficult this will be for her! Thanks for the info!0 -
In my opinion...get the heckSunnyinSD said:Also just diagnosed with stage 1a
Hi all. I am hoping you can help me. I had my surgery on Sept 6 and pathology report has me at stage 1 a grade 3 with LVSI involvement. All else is negative..lymph nodes , momentum, ovaries, Fallopian tubes, cervix. My doctor wants to do the observation mode. But, I seem to see that so many with same stage are doing chemo and/or radiation. Can any of you in same situation help with information to make an informed decision? I am so conflicted. I am in San Diego with a lot of good resources but am thinking of going to MD Anderson for a second opinion. Have any of you gone that route and, if so, what was your Experience? Thanks for whatever help you can provide.
In my opinion...get the heck to MD Anderson and get a SECOND opinion! I don't care what you've got,the stage, grade,ect, that wait and see business is just too risky. Wouldn't you rather get it over with now,just in case, than wait for the monster to come back?I'm at MD Anderson and they usually "hit it hard and fast". What was the old saying,"An ounce of prevention is worth a pound of "cure". Best debrajo0 -
Hi Becky:BeckyC said:UPSC
Good Morning - I am so glad that I found this forum - my mother who is 82 has just been diagnosed with UPSC - so many scary things online about this cancer. She has her hysterectomy next Tuesday ( the 23rd) so we don't know the stage yet but the gyn/onc says this cancer is not usually found until it is stage 3 or stage 4. So we are praying for stage 2 but realistic about how remote that is though I saw that some people were diagnosed at stage 1. She will start chemo and radiation about 3 weeks after the surgery. She is in great health - still works fulltime! - but I worry about how difficult the chemo and radiation will be for her. What kind of side effects have some of you had?
any words of encouragement for us? Any 3 year survivial rate information? Thank you so much for your help!
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.
Cheerful0 -
UPSCcheerful said: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
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!
Becky0 -
You sound like me.....I too have wrestled with the "final straw". I mean when is enough is enough. Do I spend my last months feeling like chit? Right now I am doing radiation and am spending most of my time near a toilet. I can't even chance going to the store for fear of an accident. Everytime I lie on the radiation machine I say a prayer. Its so embaressing. I have just started meds for the problem hoping they work....LGoldamillie said:another realist
Yes, I am a realist also. I have found many with UPSC at any "stage" don't really want to hear the reality that only 2% survive past 5 years. I have realized "survived" does not mean remission - it means you have not succumbed. If you read my posts I am getting very tired of beating my once strong body to a pulp with chemo, etc. to kill what doesn't want to die.
I want to survive also, but my quandary is do I have any chance at all of surviving in as a functioning person or would it just be a constant chemo search that slowly kills me instead.
Sorry. Like I said - I am a realist.0 -
UPSCBeckyC said:UPSC
Good Morning - I am so glad that I found this forum - my mother who is 82 has just been diagnosed with UPSC - so many scary things online about this cancer. She has her hysterectomy next Tuesday ( the 23rd) so we don't know the stage yet but the gyn/onc says this cancer is not usually found until it is stage 3 or stage 4. So we are praying for stage 2 but realistic about how remote that is though I saw that some people were diagnosed at stage 1. She will start chemo and radiation about 3 weeks after the surgery. She is in great health - still works fulltime! - but I worry about how difficult the chemo and radiation will be for her. What kind of side effects have some of you had?
any words of encouragement for us? Any 3 year survivial rate information? Thank you so much for your help!
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....L0 -
radiationDoonyL7 said:UPSC
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
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...L0 -
RadiationDoonyL7 said:radiation
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
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, Debrajo0 -
'your radiationdebrajo said:Radiation
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
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.0 -
You are soooo right,seaturtle said:'your radiation
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.
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, Debrajo0 -
support of friends and familydebrajo said:You are soooo right,
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
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
Beila0 -
We all know that people havebeila said:support of friends and family
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
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, debrajo0 -
DoonyDoonyL7 said:radiation
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
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....
Jan0
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