UPSC=?

debrajo
debrajo Member Posts: 1,095
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.
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Comments

  • daisy366
    daisy366 Member Posts: 1,458
    debrajo
    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
    imackie48 Member Posts: 96
    daisy366 said:

    debrajo
    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.

    Me too
    Maryann, my doctor told me the same thing, a case of bad luck..
    Irene
  • Double Whammy
    Double Whammy Member Posts: 2,832
    imackie48 said:

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

    If it's so rare
    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
    JoAnnDK Member Posts: 275

    If it's so rare
    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

    rarity
    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
    debrajo Member Posts: 1,095

    If it's so rare
    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

    UPSC
    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
    daisy366 Member Posts: 1,458
    debrajo said:

    UPSC
    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

    I don't think you screwed up, Debrajo
    I think that research will get done when these big researchers or funders have their loved ones diagnosed with UPSC!!!
  • LizGrrr
    LizGrrr Member Posts: 124
    imackie48 said:

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

    Upsc
    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
    daisy366 Member Posts: 1,458
    LizGrrr said:

    Upsc
    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

    Liz, and that's why we need...
    a good Gynecologic Oncologist not just any oncologist. Most oncologists haven't even HEARD of UPSC let alone treated it.

    Mary Ann
  • debrajo
    debrajo Member Posts: 1,095
    daisy366 said:

    I don't think you screwed up, Debrajo
    I think that research will get done when these big researchers or funders have their loved ones diagnosed with UPSC!!!

    UPSC=?
    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
  • JoAnnDK
    JoAnnDK Member Posts: 275
    daisy366 said:

    Liz, and that's why we need...
    a good Gynecologic Oncologist not just any oncologist. Most oncologists haven't even HEARD of UPSC let alone treated it.

    Mary Ann

    hereditary or spontaneous
    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
    debrajo Member Posts: 1,095
    JoAnnDK said:

    hereditary or spontaneous
    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

    upsc=?
    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
    debrajo Member Posts: 1,095
    debrajo said:

    upsc=?
    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

    UPSC=?
    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
    daisy366 Member Posts: 1,458
    debrajo said:

    UPSC=?
    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?

    Yes
    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
    mysis Member Posts: 3
    debrajo said:

    UPSC=?
    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?

    UPSC
    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
    daisy366 Member Posts: 1,458
    mysis said:

    UPSC
    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.

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

    (((HUGS)))
  • fanniemay
    fanniemay Member Posts: 53
    debrajo said:

    UPSC
    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

    doctors
    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
  • fanniemay
    fanniemay Member Posts: 53
    daisy366 said:

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

    (((HUGS)))

    where does UPSC come from
    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
    debrajo Member Posts: 1,095
    mysis said:

    UPSC
    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.

    UPSC
    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
  • debrajo
    debrajo Member Posts: 1,095
    fanniemay said:

    where does UPSC come from
    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

    upsc
    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
  • Maggie_mac
    Maggie_mac Member Posts: 32
    Clinical Trials
    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.