CSN Login
Members Online: 20

UPSC=?

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I have a question: I know this upsc is rare, was told it's really 1 in 1,000,000. I was also told there is no genetic link, no family link, no life-style link, no enviromental link, nor anything else that causes this. All this by the doctors. Also no drug just for UPSC, very little research being done, and no trial studies being done. So WHERE does this come from and are we in the group the government calls an "orphan disease?" I would like someone to tell me their best guess since I'm not getting any feed-back from the Dr.

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

I asked my doctor this same question when first diagnosed. He said it was due to "bad luck" - like being struck with lightning!!

Small consolation.

imackie48
Posts: 88
Joined: Nov 2011

Maryann, my doctor told me the same thing, a case of bad luck..
Irene

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

then why do I have 3 friends (good friends) who were diagnosed with UPSC in a 4 year period? I don't know anyone personally who was diagnosed with endometroid adenocarcinoma except me. Someone in my neck of the woods must have those statistics backwards!

I now see a NP for my followup exams and she seems to have more time than my gyn/onc did. I think I'll ask her if they're seeing more of it these days. I see her next month. I'll try and remember to ask.

Suzanne

JoAnnDK
Posts: 276
Joined: Jun 2011

My doctor at Hopkins has only 5 patients with UPSC, and she has patients come to her from all over the country. My local gyn onc has 3 patients. When my radiation oncologist released me last month, she told me she now has no patients with UPSC. I would call that orphanhood!

I have a cousin who is a tumor registrar at a big hospital in Boston and she told me that in the national database, there is not even a separate category for UPSC.

Which makes me wonder where they get stats for this disease?

JOANN

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I think like you Double Whammy. I go to M.D. Anderson and there was a group of us ladies waiting for radiation. Turns out that all six of us had UPSC, at about the same stage and grade, and we all could not have been more polar opposites!Some were young, most middle age, one was really old, were fat, thin,bad life-styles, health nuts, excercise freeks, couch potatoes. We even discussed our children and again, it was all over the place! I had had the most pregnancies(8) most had two or three and one had never been married or had children. Our husbands didn't match up either and we were of ALL races and financial backgrounds! I just don't get where the heck this comes from...there HAS to be some triger.When I asked why there wasn't SOME drug just for this and why no trials all I got was "Well, Isreal is doing some small studies, but here there are just to few to make it worth our while". ie, there's no money in it for them and we are going to die any way so why bother! I was really steamed that we are "kind of like ovarian cancer" so those drugs will do for now! I would really like to know just WHERE I screwed up! Thanks Guys! Debrajo

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

I think that research will get done when these big researchers or funders have their loved ones diagnosed with UPSC!!!

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I think you're right Daisy366! I remember thinking at the time, which Hollywood star or politian's wife was going to have to get this upsc for all of us to be noticed! I wouldn't wish this on any one, but something has to happen! I was kind of worried about my daughter and I have three granddaughters so far, but was told not to even think of it since it wasn't a family thing. One of my granddaughters has already had the hpv shots since cervical cancers run strongly in her other side of the family. Wouldn't it be nice to just get a shot for all cancers like we use to with poleo when we were kids. OOOPS! just dated myself! Debrajo

fanniemay
Posts: 52
Joined: Nov 2011

Hi, Do you see Dr. Peter Johnson at the Aurora Women's center in West Allis? If so, he is the one I also see. Yeah, he doesn't have much to say about UPSC

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

My gyn/onc said the same - bad luck

In the chemo pit, I'm the only upsc (everyone else is ovarian). My gyn/onc says he has 50 upsc patients which sounds off (perhaps he's had 50 over time), and my gyno said I was her 2nd in 25 years

Liz in Dallas

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

a good Gynecologic Oncologist not just any oncologist. Most oncologists haven't even HEARD of UPSC let alone treated it.

Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

DebraJo, I went for genetic counseling and testing because UPSC can be hereditary. My tumor sample was sent to CA for analysis. My test came back "spontaneous" but it just as easily could have been hereditary.

It is really a lot more complex that that.....

JOANN

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

Joann, THAT is something I have not heard of(hereditary)before! Will have to tell my daughter just in case. I do genealogy for a hobby and have traced all known lines on both sides of my family and even though they wouldn't know about UPSC back then, as far as I can find out I am the ONLY one with any kind of "female" cancer. One dr. said that African-Americans and Jewish women had a "larger population" of UPSC than other races. I am neither one, so I guess I am "spontaneous",too. I love a mystery, but not with this stuff! A portion of tissue from my hysterectomy was sent to Israel for study so maybe something will come out about this from over-seas. Debrajo

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

While trolling this site and other cancer types on this site I seem to be seeing one common thread in about 2/3 of people with cancer.That tread is EXTREME stress, fear, anxiety, and depression. Many had at least two of these,several(like me) have all of them, and have memories of these four things(including anger) from early childhood. It was really kind of weird! Could cancer really start from extreme trauma in childhood, could it really be this simple? Thoughts anyone?

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

Read the book "Getting Well Again" by O. Carl Simonton, MD. He explains the mind-body connection. I'm sure there are other such books.

mysis
Posts: 3
Joined: Mar 2012

I do believe trauma has lots to do with this. My sister lost her first husband at a very young age which affected her health at that time. She was diagnosed with graves disease, her kidneys acted up and the list goes on. Fifteen years after the passing of her first husband she met husband #2 and was happy again. My sister was diagnosed in November 2011 with USPC. She was very healthy up until that point. She was slim and worked out regular. She also ate healthy. She passed 2 weeks ago. In the months leading up to her diagnosis she suffered extreme stress, anxiety fear...you name it. Husband #2 was diagnosed with cancer, she had problems with her son including a car accident in which he had to be revived, and her little granddaughter was diagnosed with Rett Syndrome.

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

Oh, I am so sorry. We will really never know the "whys" to so many things.

(((HUGS)))

fanniemay
Posts: 52
Joined: Nov 2011

I have been going through my mind what could have caused this? I think it is from being in my hot tub too often. That may sound silly, but I heard UPSC grows in hot, moist places. I also think the uterus has to be very thick to get this. Mine was 12 and normal is 4. Just a thought

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I never heard of that, but who knows? When I was diagonsed mine was a 5, so if normal was 4, I was just barely over normal. I think we have to find out the cause(s) to find a cure. There has to be something...I just have a hard believing in spontanious combustion! Don't know if you are a c125 person or not, but even at my higest before surgury I was only a 42.Best, Debrajo

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I am sooo sorry to hear of your sisters passing after all she had endured! My mother is a 26 year breast cancer surviver and to say her life was "stressfull" would be the understatement of the year. I have been looking for a "trigger" for this upsc since I was diagnosed and I think great stress, maybe chemical inbalances in the brain, and our bodies responce to them could very well be what starts the chain-reaction and ammuine failure that may jump=start this and all cancers. We cernainly know we are all under great stress, anxiety, drepression, and anger AFTER we are diagnosed! Just curious, I've heard of Rett Syndrome ,but am not sure exactly what it is. Would you mind sharring? Thanks for the post and please let me know how you and the family are doing! Hugs, Debrajo

mysis
Posts: 3
Joined: Mar 2012

hi debrajo...probably the wrong forum for Rett Syndrome so I won't get into too much detail...
Rett is very similar to Autism but actually worse from everything I've read and only girls get it. My sisters granddaughter is now 3, from the time she was 6 months or so they thought she was autistic. but with Rett as the syndrome progresses, a child will lose purposeful use of her hands and the ability to speak (she doesn't talk, she walks sideways & her hands are always on the move). Compulsive hand movements such as wringing and washing follow the loss of functional use of the hands. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with every body movement, including eye gaze and speech. Eventually she will be wheel-chair bound. There's lots of info on the web about it. Is there any treatment? There is no cure for Rett syndrome.

It reminds me of ALS, very crippling disease. Sometimes I think God took my sister so she could watch over her granddaughter when her time comes. I'm still very sad about my sister, and we're all having a hard time right now, I am happy for you and your mother though.

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

Hi mysis and thanks for the info on Retts. I am always curious since I have a 5 year-old granddaughter who has been through every test possible and is still a mystery. We;ve had every diagnoses from "mosic" Downs syndrom to a rare form of autism. Your little one and her care-givers have a rough row to hoe. I keep going back and forth with my religous training of "there is a reason for everything" to just pure "why the heck"! Wishing you and yours peace and confort for the every day and answers in the future> Come back and see us and let us know how YOU are! Best, Debrajo

mysis
Posts: 3
Joined: Mar 2012

Hi Debrajo...Rett Syndrome is not an easy diagnose. My sisters granddaughter was diagnosed autistic at about 6 months. She was almost 3 by the time they diagnosed her with Rett Syndrome. The good thing about being diagnosed is her wheel chair and stuff will be provided for her. I'm curious about your granddaughter. Sounds like we have somewhat parallel lives. I believe there's a reason for everything and someday we will know what the reason is. Feel free to email me if you like to talk more on this.

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

Hi MYSIS, Having trouble finding your private e-mail so I will send you mine so we wont distract the other ladies with our Rett discussion. I am on usualy every nite, but have a high school senion I'm trying to keep up with! Will look forward to hearing from you! Debrajo Debraj856@gmail.com

Maggie_mac
Posts: 5
Joined: Mar 2012

I certainly understand the frustration, as I feel it too. Just remember that studies are worthless unless you have enough patients to get differential results. If our UPSC is that rare, where are the researchers going to find enough women without other conditions to enroll in the trials? Do you want 5 or 10 year results? That takes time and long-term survivors. I won't say money isn't an issue, but you need to look at the bigger picture.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I asked a gyn-onc I consulted with recently how many UPSC patients he sees. His response was that unfortunately, quite a few. He had just diagnosed 2 new cases and said he expects that for whatever reason he will be seeing more. This seems to go along with the overall increases in cancer diagnoses over the last 50-75 years.

We all want the answer to “Why me?” but I do not think there is a simple answer or a single answer. Rather, it is an unfortunate confluence of contributing events. Growing up in the age of increasing industrialized food production and the move to overly processed convenience foods is most likely a key contributing cause to the increasing health issues in our western environment. And along these lines, there is the notable increase in health issues in countries adopting this lifestyle. Add in the increases in toxins in the environment from all those wonderful chemical inventions to control every adverse situation and make life easier and more convenient – pesticides, herbicides, household cleaning products, etc. Our bodies must work overtime to maintain and manage our health amidst all these onslaughts. But throw in some untimely life stresses and our poor bodies have a hard time keeping up. It’s known that abnormal cell replication occurs in just about everyone’s body at some time but the over-stressed body is not always able to control and eliminate these mistakes – and they proliferate. And cancer gets its start. Which cells are affected and at what point in time is of course the mystery. Perhaps other mistakes occurred and we never knew – body to the rescue. But this time it got overwhelmed. So my plan is to focus on ways to eliminate the work my body has to do in order to be able to devote its energies to aiding my healing. This may not cure or eradicate my cancer issues but hopefully I can at least control it to some degree.

In a recent discussion with my gyn-onc (at a research university) he noted that down the road we will not be treated based on the origin of the cancer but on the tumor’s unique attributes that allow proliferation – all the targeted, personalized treatment that we hear about but that’s not here yet. He was talking 20-25 years down the road as that is how long it realistically takes to develop, test, and implement new treatments, plus grappling with cost of such treatments. I won’t hold my breath! I also had genetic testing done as I also had breast cancer but report noted ‘no genetic abnormalities that are currently known’ but could be ‘yet to be recognized abnormalities’ or ‘common environmental factors’ (a sister also had breast cancer, another melanoma).

Meanwhile, I’m going to devote my energies to my healing as I hope all of you are doing as well!
Annie

sleem
Posts: 92
Joined: Feb 2010

I was under family and work stress for 10 years before USPC arrived. I believe that this caused a 'push' botton somewhere in my body. I once tried to see what female problems or or none at all that we share. I have had migraines with my periods until menopause. I was regular like clockwork. One month my period stopped, no more migranes,no spotting, it just stopped & then I lived in a period of stress, and more stress. No one in my family to my knowledge had female cancers.
We live in the rare, not many, less studied, older population, & not so needy cancer for mass populations. I have 3 grand-daughters and no daughters. I pray this is not able to be passed along in a genetic link.
I even thought that my microwave was at waist level for 10 years. Who knows how we have got it. I too believe that we are not on the high research topic of today.
If any group could link us somehow, it would be us. I even thought of how many of us had a D&C as I did early in my adult life around 35 for one day of crazy bleeding.
Even the American Cancer Society has no place for donors to give money to uterine cancers. We do not even hit the top 4 listed for donations. There is not even a spot to designate other types except into a general fund. I have emailed several times asking for such a means to specifically designate $ for this society in the area of uterine cancer (ex. female reproductive cancers instead of nothing specified). I now donate to my specific hospital & state for uterine cancers. We are only in isolation if our voice is not heard from us now and those in the future.
Good wishes to all of our sisters and thank you for expressing what is there for us at so many doctors offices-the silent group of health professionals who perhaps could help beyond where we are now.
Best to all.

fanniemay
Posts: 52
Joined: Nov 2011

Hi Sleem, I, just like you, have gone over my life wondering where this came from. I also had a lot of stress about 10 years before. I worked in my daughtrs retail store and also babysat for 2 of my toddler grandchildren. I am glad I was able to help my daughter...I will never regret that. Other things I thought of ....I know this is crazy. I used to sit in my hot tub alot and had it at 104 degrees. I read that UPSC grows in hot wet places. I also had horrible migraines in my 30s and 40s almost every morning when I woke up. I used to have to throw up and didn't want to live anymore. Then 4 years ago I found out I had type 2 diabetes....which is a risk factor for cancer. My diabetes has always been in control though. With lots of prayer, my migraines pretty much stopped and I thank God for every day that I live. I agree doctors don't know what to say. I had to do my own research and tell my dr What I want done! He agreed and added two more chemos on...so I had my 5th today and will have one more...then 3 internal radiations. What kind of treatments are you having? God Bless

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network