I am newly diagnosed with UPSC.

DoonyL7

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?

debrajo

Sadly, yes, there are a lot
Sadly, yes, there are a lot of us! Glad you found us and (sigh)welcome to the "unlucky" cancer club! I'm Debra(jo) and I am UPSC 1a, grade C. Diagnosed July 2009,surgery, chem, and internal radiation. Been NED since May 2010. Let us know what you need or ask anything you want. Nothing is out of bounds here. Let us hear back from you and if I don't know the answer(and I usually don't!) someone will come along to answer the question! Breath deep, smile and try to relax! None of us fat ladies have sung yet!! Best, debrajo

marieinlv

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.

DoonyL7

debrajo said:

Sadly, yes, there are a lot
Sadly, yes, there are a lot of us! Glad you found us and (sigh)welcome to the "unlucky" cancer club! I'm Debra(jo) and I am UPSC 1a, grade C. Diagnosed July 2009,surgery, chem, and internal radiation. Been NED since May 2010. Let us know what you need or ask anything you want. Nothing is out of bounds here. Let us hear back from you and if I don't know the answer(and I usually don't!) someone will come along to answer the question! Breath deep, smile and try to relax! None of us fat ladies have sung yet!! Best, debrajo

UPSC
There are a lot of us?? I was under the impression this cancer was pretty rare. Is that not true?
I am trying to find out if my cancer had acess to my lymphatic and circulatory systems. If this is the case,I think I am in deep doo doo. I do know abd. fluid was positive as was parametrial surgical margin. There was so much "stuff" in my Surgical Pathology Report it was mind boggling. Anyway, thanks much for words of encouragement....Best Also DoonyL7

ConnieSW

marieinlv 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.

There are too many of us
There are too many of us even if UPSC is relatively rare. I was dx 3/12, 1a grade3. Currently NED.

sunflash

ConnieSW said:

There are too many of us
There are too many of us even if UPSC is relatively rare. I was dx 3/12, 1a grade3. Currently NED.

Hi Doony, I'm another with
Hi Doony, I'm another with UPSC.....1a, diagnosed in June 2011. This is a scary cancer to have, but knowing others dealing with the same thing helps.
Sending hugs!

LizGrrr

DoonyL7 said:

UPSC
There are a lot of us?? I was under the impression this cancer was pretty rare. Is that not true?
I am trying to find out if my cancer had acess to my lymphatic and circulatory systems. If this is the case,I think I am in deep doo doo. I do know abd. fluid was positive as was parametrial surgical margin. There was so much "stuff" in my Surgical Pathology Report it was mind boggling. Anyway, thanks much for words of encouragement....Best Also DoonyL7

Stats
I think there's something like 4,000 cases of UPSC diagnosed each year, which makes it about as prevalent as male breast cancer

Liz in Dallas, diagnosed 10/11, surgery, chemo, external rads, NED since 7/12

debrajo

DoonyL7 said:

UPSC
There are a lot of us?? I was under the impression this cancer was pretty rare. Is that not true?
I am trying to find out if my cancer had acess to my lymphatic and circulatory systems. If this is the case,I think I am in deep doo doo. I do know abd. fluid was positive as was parametrial surgical margin. There was so much "stuff" in my Surgical Pathology Report it was mind boggling. Anyway, thanks much for words of encouragement....Best Also DoonyL7

Rare as relative to what? I
Rare as relative to what? I was told it is ,really, 1 in 1,000,000, but that is world wide and there are, what, three trillion people on earth now? I know of at least six other people in Texas, not here on the boards, that have UPSC. From what my dr. said, all cancers are on the rise and they are seeing more UPSC at MD Anderson that ever before. Also, regardless of where this cancer is SUPPOSED to go, it goes where it darn well wants! I think this is true of any cancer, it's just not as likely too. Honey, we ALL are in deep doo doo! We just do the best we can day to day, talk all of this out, and leave the rest to God. That's all any human being CAN do! We are here and you will be hearing from others who are long-time survivers of UPSC. Best, debrajo

cheerful

Hi Doony:

I was diagnosed in February of 2011 with Stage 1, Grade 3 of UPSC. Had a hysterectomy and 6 rounds of carbo/taxol and 3 rounds of radiation. I am currently NED - finished treatment in October of 2011. Hopefully, I will remain NED forever. I am enjoying life and have learned to appreciate each and every day that I have.

I feel so terrible about some of the other members of this group that have lost their lives to this very bad cancer over this past year and my heart goes out to their families. Yes, it is a very scary cancer to have, but you have to remain optimistic and hopeful for the future after you are finished with your treatments and just continue to go for your check-ups, cat scans and blood work. I had minimal side effects with chemo just some constipation, and could not eat much for a few days after each chemo treatment.

I got a lot of wonderful support from family and friends while I was going through treatment for this cancer last year. Going through chemo is doable and to me the worst side effect was losing my hair as I had long hair (a one length bob) and very thick. I felt that I wanted to live a long life so losing my hair was only temporary and that it would grow back. I am getting my hair cut in about 2 weeks since I last had my hair cut a couple of weeks before I started chemo in April of 2011. It is great to have my hair coming back. It has grown quite a bit and is wavy whereas before my hair was very straight so one great thing is that I do not have to set my hair at all whereas before I did.

Anyway, good luck with your treatments and do keep in touch on this board.

Cheerful

Pat51

Glad You Found Us
Dooney,

I was diagnosed with UPSC 2/11. I am sorry that you had to join our UPSC group, but we are glad to have you. You will find a wealth of support and information from the ladies on this board.

I had 6 chemo treatments and 3 internal radiation treatments. Sometimes the chemo can be rough but is doable and well worth doing to fight this cancer. I had no side effects from the internal radiation. I have been NED since finishing treatment one year ago.

Wishing you the best of luck with your treatments.

Pat

DoonyL7

LizGrrr said:

Stats
I think there's something like 4,000 cases of UPSC diagnosed each year, which makes it about as prevalent as male breast cancer

Liz in Dallas, diagnosed 10/11, surgery, chemo, external rads, NED since 7/12

hello
Goodness, so many of us....Makes you wonder whats going on. OK have a question what does NED mean? Lorna in AZ

DoonyL7

debrajo said:

Rare as relative to what? I
Rare as relative to what? I was told it is ,really, 1 in 1,000,000, but that is world wide and there are, what, three trillion people on earth now? I know of at least six other people in Texas, not here on the boards, that have UPSC. From what my dr. said, all cancers are on the rise and they are seeing more UPSC at MD Anderson that ever before. Also, regardless of where this cancer is SUPPOSED to go, it goes where it darn well wants! I think this is true of any cancer, it's just not as likely too. Honey, we ALL are in deep doo doo! We just do the best we can day to day, talk all of this out, and leave the rest to God. That's all any human being CAN do! We are here and you will be hearing from others who are long-time survivers of UPSC. Best, debrajo

Hello
I guess I never thought about world wide stats. I had my surgery at Anderson, guess I am part of the stats now. Talk it out huh...I'm such a control freak that one is hard for me. I will say my life is finally in order since hearing I had this thing. Will, healthcare proxy, living will all done. Husband and sons aware of my wishes. Also applied for Social Security & Medicare since will be 65 soon. Have healthcare supplemental lined up as well as Part D Plan. Soooo not much else to stress about. I was a basket case there for awhile stressin over all this necessary crap. I am much calmer now and thankful to have someone to talk too......Lorna

DoonyL7

marieinlv 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.

Hiya
Wow, thats wonderful. Glad to hear your doing so well. I am trying really hard not to view my Dx as a death sentence. Its so darn hard to be upbeat. I am still having some abd. pain even though surgery was 6/25. Is this normal? Lorna

DoonyL7

cheerful said:

Hi Doony:

I was diagnosed in February of 2011 with Stage 1, Grade 3 of UPSC. Had a hysterectomy and 6 rounds of carbo/taxol and 3 rounds of radiation. I am currently NED - finished treatment in October of 2011. Hopefully, I will remain NED forever. I am enjoying life and have learned to appreciate each and every day that I have.

I feel so terrible about some of the other members of this group that have lost their lives to this very bad cancer over this past year and my heart goes out to their families. Yes, it is a very scary cancer to have, but you have to remain optimistic and hopeful for the future after you are finished with your treatments and just continue to go for your check-ups, cat scans and blood work. I had minimal side effects with chemo just some constipation, and could not eat much for a few days after each chemo treatment.

I got a lot of wonderful support from family and friends while I was going through treatment for this cancer last year. Going through chemo is doable and to me the worst side effect was losing my hair as I had long hair (a one length bob) and very thick. I felt that I wanted to live a long life so losing my hair was only temporary and that it would grow back. I am getting my hair cut in about 2 weeks since I last had my hair cut a couple of weeks before I started chemo in April of 2011. It is great to have my hair coming back. It has grown quite a bit and is wavy whereas before my hair was very straight so one great thing is that I do not have to set my hair at all whereas before I did.

Anyway, good luck with your treatments and do keep in touch on this board.

Cheerful

Hello
I do get support from some of my family, others don't like to mention it at all. My husband has been good about driving me everywhere and doing house work and shopping if I can't. But well...the emotional support just isn't there. Just before my Dx I said to him I have cancer. He said why did you say that, you don't know that. I told him my gyn is sending me to specialist very fast. They don't move this fast if its nothing. He had nothing to say.
I am always very up front about everything. I am not going to have the added stress of pretending with him.
I also cut my hair off just before chemo and I won't wear a wig, just a hat. I'm in Az too friggiin hot here for wig. Good Luck to you also....L

DoonyL7

Pat51 said:

Glad You Found Us
Dooney,

I was diagnosed with UPSC 2/11. I am sorry that you had to join our UPSC group, but we are glad to have you. You will find a wealth of support and information from the ladies on this board.

I had 6 chemo treatments and 3 internal radiation treatments. Sometimes the chemo can be rough but is doable and well worth doing to fight this cancer. I had no side effects from the internal radiation. I have been NED since finishing treatment one year ago.

Wishing you the best of luck with your treatments.

Pat

hello
Sounds like you didn't have external radiation? Glad to hear internal no problem. I was a bit concerned about that one. Thanks for the info...L

debrajo

DoonyL7 said:

Hello
I do get support from some of my family, others don't like to mention it at all. My husband has been good about driving me everywhere and doing house work and shopping if I can't. But well...the emotional support just isn't there. Just before my Dx I said to him I have cancer. He said why did you say that, you don't know that. I told him my gyn is sending me to specialist very fast. They don't move this fast if its nothing. He had nothing to say.
I am always very up front about everything. I am not going to have the added stress of pretending with him.
I also cut my hair off just before chemo and I won't wear a wig, just a hat. I'm in Az too friggiin hot here for wig. Good Luck to you also....L

I think I am married to your
I think I am married to your husband's brother!LOL Keep being up front with him. He probably wont except it, but at least he was forewarned. Best, debrajo

DoonyL7

debrajo said:

I think I am married to your
I think I am married to your husband's brother!LOL Keep being up front with him. He probably wont except it, but at least he was forewarned. Best, debrajo

Hiya
Ya know sad thing is I went through this before with him. His younger brother passed away from Hodgkins Disease when he was 29. He was ill on and off for many years and yet his death was a shock for my husband. My husbands inability to come to terms with what was happening made things so much harder for my brotherinlaw. I learned a lot from that experience. Unfortunately it appears my husband did not.....Best Lorna

debrajo

DoonyL7 said:

Hiya
Ya know sad thing is I went through this before with him. His younger brother passed away from Hodgkins Disease when he was 29. He was ill on and off for many years and yet his death was a shock for my husband. My husbands inability to come to terms with what was happening made things so much harder for my brotherinlaw. I learned a lot from that experience. Unfortunately it appears my husband did not.....Best Lorna

They can stick their heads
They can stick their heads in their....uhmmmm in the SAND just so long before reality bite's them in the behind! Makes it so much harder for them and doesn't help us at all. Mine still has the attitude of"it's all gone, been fixed, can't come back, ect." and its been 28 months. Dwelling on it is not good, but hiding from it is worse. best, debrajo

daisy366

DoonyL7 said:

hello
Sounds like you didn't have external radiation? Glad to hear internal no problem. I was a bit concerned about that one. Thanks for the info...L

Dooney
Welcome. I was diagnosed with UPSC 4 years ago and now dealing with 2nd recurrence in lymph nodes. FYI, NED stands for "no evidence of disease" which is such a happy time for us.

I'm scheduled to start chemo (doxil) thursday. Although our treatments are similar in many ways, there are different approaches depending on your doctor and what tools they use to make decisions. My doctor relies on tissue assays to determine which chemo to use. I've been dealing with insurance problems - denying one chemo.

We all need to hang in there and try to ride the waves of emotion and stress involved in cancer treatment. I hope your husband gets his head on straight. Mine is a worry wart and generally empathetic but today he confessed that he was sorry that he was so adamant about me starting chemo months ago. He admitted he was ignorant about the severe side effects that some chemos cause. It felt good to have him admit this. Other people just don't "get it" like we do.

I encourage you to stay positive even though I struggle with this sometimes. Just try putting one foot in front of the other and asking for help along the way.

Prayers go out to you and all here. Hugs, Mary Ann

DoonyL7

debrajo said:

They can stick their heads
They can stick their heads in their....uhmmmm in the SAND just so long before reality bite's them in the behind! Makes it so much harder for them and doesn't help us at all. Mine still has the attitude of"it's all gone, been fixed, can't come back, ect." and its been 28 months. Dwelling on it is not good, but hiding from it is worse. best, debrajo

I agree not gonna hide a thing....lorna

DoonyL7

daisy366 said:

Dooney
Welcome. I was diagnosed with UPSC 4 years ago and now dealing with 2nd recurrence in lymph nodes. FYI, NED stands for "no evidence of disease" which is such a happy time for us.

I'm scheduled to start chemo (doxil) thursday. Although our treatments are similar in many ways, there are different approaches depending on your doctor and what tools they use to make decisions. My doctor relies on tissue assays to determine which chemo to use. I've been dealing with insurance problems - denying one chemo.

We all need to hang in there and try to ride the waves of emotion and stress involved in cancer treatment. I hope your husband gets his head on straight. Mine is a worry wart and generally empathetic but today he confessed that he was sorry that he was so adamant about me starting chemo months ago. He admitted he was ignorant about the severe side effects that some chemos cause. It felt good to have him admit this. Other people just don't "get it" like we do.

I encourage you to stay positive even though I struggle with this sometimes. Just try putting one foot in front of the other and asking for help along the way.

Prayers go out to you and all here. Hugs, Mary Ann

Hello Mary Ann,
No evidience of disease gee whiz I'm such a dummy. Since I am still in treatment right now doctor seems to be interested in bloodcounts and C-125 results. Mine was 135 before surgery and now at 14 after first round of chemo. I saw where you are dealing with insurance problems. Such a pain in the toot, like you don't have enough to worry about....
I think your hubby is just plain scarred. I am glad he confided in you though. My hubby was sitting next to me when chemo nurse went over drugs side effects. He had no place to hide.
In my oppinion nothing clears a room like saying you have cancer . I also love going out of the house with my new "bald" look. Let them look! I could care less.
Anyway I am trying to be more positive but mostly one foot in front of other works for now.
Thanks for your support. I will pray for those self important jerks at your insurance co. that they may see the person and not just the paperwork. Hugs, Lorna