UPSC=?

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  • snowbird_11
    snowbird_11 Member Posts: 160
    #22
    Just my random thoughts on this subject ;-)
    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
  • mysis
    mysis Member Posts: 3
    #23
    debrajo said:

    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

    USPC
    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
    debrajo Member Posts: 1,095 Member
    #24
    mysis said:

    USPC
    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.

    UPSC
    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
    mysis Member Posts: 3
    #25
    debrajo said:

    UPSC
    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

    UPSC
    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
    debrajo Member Posts: 1,095 Member
    #26
    mysis said:

    UPSC
    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.

    UPSC
    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
  • sleem
    sleem Member Posts: 92
    #27
    snowbird_11 said:

    Just my random thoughts on this subject ;-)
    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

    stress
    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
    fanniemay Member Posts: 53
    #28
    sleem said:

    stress
    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.

    stress
    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

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