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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?

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debrajo
Posts: 732
Joined: Sep 2011

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

DoonyL7
Posts: 33
Joined: Sep 2012

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

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LizGrrr
Posts: 124
Joined: Nov 2011

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

DoonyL7
Posts: 33
Joined: Sep 2012

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

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debrajo
Posts: 732
Joined: Sep 2011

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

DoonyL7
Posts: 33
Joined: Sep 2012

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

marieinlv
Posts: 39
Joined: Aug 2011

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.

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ConnieSW
Posts: 543
Joined: Jun 2012

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

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

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!

DoonyL7
Posts: 33
Joined: Sep 2012

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

BeckyC
Posts: 11
Joined: Oct 2012

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!

BeckyC
Posts: 11
Joined: Oct 2012

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!

cheerful
Posts: 115
Joined: Apr 2011

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

DoonyL7
Posts: 33
Joined: Sep 2012

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

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

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
Posts: 33
Joined: Sep 2012

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

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debrajo
Posts: 732
Joined: Sep 2011

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

DoonyL7
Posts: 33
Joined: Sep 2012

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

Pat51
Posts: 103
Joined: Feb 2011

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
Posts: 33
Joined: Sep 2012

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

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daisy366
Posts: 1493
Joined: Mar 2009

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
Posts: 33
Joined: Sep 2012

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

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txtrisha55
Posts: 423
Joined: Apr 2011

I came to this board and did not know what NED was either. I asked my doctor at one of my visit so she had to tell me. I love the fact that you are doing the bald thing and let everyone look and not caring. I too went bald, it was last summer, in Texas where we had 100 degree days, not wearing a wig, hat or scarf in that heat. I had several kids look at me funny but it really did not bother me. One woman came up and said I remember that look, I had it last year, hang in there it will grow back. I did have a lot of men stop me in stores and ask if I was going through chemo, they stopped and said been there done that, and gave encourgement to hang in there. I came back to work bald it was not bad. My hair has since grown out, I have had one hair cut to get it short again and need another one. Please try to keep a positive attitude because it is everything. There is that saying this to shall pass. It is a one day at a time deal right now but it will pass. Praying for you. trish

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ConnieSW
Posts: 543
Joined: Jun 2012

"This too shall pass" has been my motto since I was a girl. It gets me through the bad times and insures I cherish every minute of the good.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I did the bald thing too and found that people treated me pretty nice.

I'm not sure if I will or won't be bald - have had 2 nurses tell me opposite. Time will tell but I will again be sporting my shiny skull.

Not have a hot hurting head from wig and no chin hairs to pluck - it's all good!!! lol

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

I had one hair under my chin that I always had to pluck. 1 yr out and it has not grown back. But the hair on my top lip has. I hate that so i pull them out. Has anyone tried the new thing the No-No yet? When the green stuff came out several years ago my young daughter at the time bought it. It was not wax but green sticky stuff that said on the infomercial that it did not hurt. LIES. but with a 17 yr daughter who knew everything, my sister and I could not tell her anything. I helped her put the green stuff an her leg and rubbed the little white cloth over it. She then told me to pull it off fast as the directions said, I did. She screamed. She did not use it again. It sat in our cabinet for about a year before I told her I was throwing it away since she was not going to use it.
I was lucky that my head did not hurt when I had chemo but the few times I tried to wear a hat I sweated like crazy, took the hat off and my head looked like someone had poured a glass of water on my head. That is why i just went bald, it was cooler.

Good Luck with your treatment and may it take care of any cells that may be lurking. Prayers. trisha

DoonyL7
Posts: 33
Joined: Sep 2012

I have a better story about that sticky stuff. I used it for a "bikini" wax. I put it on both sides, put the little material thing on it and pulled. OMG the pain was unbelievable! I sat on the tub for 15 mins before I could bring my self to remove the other one. The worse thing is it didn't even work well. "Lies" is right, never again.....You take care Trish....lorna

DoonyL7
Posts: 33
Joined: Sep 2012

I have a better story about that sticky stuff. I used it for a "bikini" wax. I put it on both sides, put the little material thing on it and pulled. OMG the pain was unbelievable! I sat on the tub for 15 mins before I could bring my self to remove the other one. The worse thing is it didn't even work well. "Lies" is right, never again.....You take care Trish....lorna

DoonyL7
Posts: 33
Joined: Sep 2012

Funny you mentioned chin hairs. I just discovered by nose hair has disappeared :).....lorna

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Nose hair! That was the one thing that seemed to bother me the most is losing my nose hair. We need the nose hair to capture the bad things before they get into our systems. Without it how can we have that first step of protection? It was after I finished all the chemo last year in August then in Feb 2012 I got called for Jury duty. I wore a surgical mask down in the central jury room because I did not want to breathe in everyone's germs. Once we got upstairs to the court room I took it off. But when they asked does anyone have a good reason they cannot serve, I told them that I had just finished chemo and my immune system was compromised and I did not feel comfortable setting in the court room with people coughing and sneezing. They did not pick me but the people on each side of me got picked. I did find the little things like band aids that go over your nostril, it is from the web site First Defense Nasal Screens (shown on Shark Tank) and I bought a supply of them. It is great when the season changes and all the pollen, mold and ragweed are out. Praying for you and all on this site. trish

DoonyL7
Posts: 33
Joined: Sep 2012

I had to see my GP to renew my scripts. I was terrified sitting in the waiting room with sick folks. I never thought about a mask, good idea.

DoonyL7
Posts: 33
Joined: Sep 2012

Lol so nice to know another out there doing the bald thing. I mean realy a wig would be just too hot. My heads sweats like crazy just from a hat. Oh I have to tell you when I go to store it is my hubby who says...Ya got your hat????? Its almost like I'm an embarrestment. Next time he does it gonna say something. My oldest son just asked me if my hair will grow back now that 1st chemo is over. I said probably but second round of chemo will take care of that....you take care Trish......lorna

seaturtle
Posts: 41
Joined: Aug 2012

You mentioned your husband's reaction. I was saddened when I told a couple of friends about mine. There was no reaction except "Oh, I am sorry). Same thing when I returned from surgery. I needed someone to talk to about all of it. I think my friends simply do not want to face the fact that I am ill or just want to keep away from the subject.

Then I came here, and so glad I did.

janh_in_ontario
Posts: 109
Joined: Sep 2010

I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
Does anyone else find this - or am I super sensitive?
I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
Thanks for listening!
Jan

jonesgrp
Posts: 3
Joined: Oct 2012

Hello all: so happy to have found this group. I am newly diagnosed this week. I am 64 and started having post menopausal spotting in late July 2012. I had hysteropscopy and D&C 10 days ago and know that this is Grade 3. Surgery Oct. 29 for staging. I am especially interested in complementary treatments, nutrition, acupuncture, massage etc. as well as in how to cope with well-meaning friends and family. Thanks so much!

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daisy366
Posts: 1493
Joined: Mar 2009

Sorry you've come to join us here. This is great place for support.

Hope you have GYN Onc to do your surgery. Please request tissue assay - this will save guessing about best treatment in the future.

Hope all goes smoothly for you. Keep us posted.

Mary Ann

jonesgrp
Posts: 3
Joined: Oct 2012

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...

DoonyL7
Posts: 33
Joined: Sep 2012

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...lorna

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

The "normies" just don't "get it". Can't expect too much from them.

ConnieSW's picture
ConnieSW
Posts: 543
Joined: Jun 2012

Jan, I, too, find myself offended by some of the well meaning remarks that others make re my diagnosis. I always respond graciously but even before I had cancer I didn't say things to others like, "I know you will be fine.". No one can make that promise. I want an honest response that simply wishes me the best.

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

It is the well meaning friends that do not understand our fears. Not going through it themselves they cannot understand it. The one thing I have noticed about my cancer, is now I seem to be the go-to girl at my work. Me fighting caner and it going through my work place, coming back to work bald and talking about it with close friends at work. I am now the one everyone seems to come to. Trish, you have been there so tell me what to do? How did you know? How did they find it? What is chemo like? It is kinda funny but I answer the best why I know how. One man was using a chemo cream for a skin cancer on his face and wanted to know if he would lose his hair because he did not want to use it if his hair would fall out. I told him he would have to ask his dr that question but I thought that since it was just a topical cream and not being shot through his whole blood stream that he would not lose his hair. He talked to his dr and he used the cream and did not lose his hair. It keeps me on my toes, talking to people about cancer but it seems to help them too. I do get those that refuse to even think that it might come back but in life there are no guarantees but they do not understand that. Wishing you well. trish

DoonyL7
Posts: 33
Joined: Sep 2012

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

Goldamillie
Posts: 26
Joined: Oct 2012

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.

DoonyL7
Posts: 33
Joined: Sep 2012

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....L

DoonyL7
Posts: 33
Joined: Sep 2012

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......

SunnyinSD
Posts: 1
Joined: Oct 2012

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.

BeckyC
Posts: 11
Joined: Oct 2012

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!

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

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 debrajo

Goldamillie
Posts: 26
Joined: Oct 2012

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 hugs

BeckyC
Posts: 11
Joined: Oct 2012

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!

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