UPSC - Any survivors greater than 5years?

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  • nthemouse
    nthemouse Member Posts: 1
    #42
    Looking for long-term survivors as well

    I was diagnosed with endometrial cancer six weeks ago.  Had a TLH and a couple lymph nodes removed.  The day after surgery, my surgeon was thrilled - he'd caught it early and got it all, he said.  The next day, though, histology told a different story.  Grade II, 53% invasion of the mesometrium, confirmed Type II endometrial adenocarcinoma that had metastasised to one ovary with Stage IIIa squamous cell differentiation.  Luckily nothing in the lymphs, nothing in the peritoneal washings, nothing anywhere else other than one ovary.  I don't have the HER2 marker, so herceptin is out. 

    I've had my first session of chemotherapy, Taxol and carboplatin, and my oncologist says my survival chances are about 50/50.  I have enough of a medical background to read medical journals and make sense of most of it, and have scoured university libraries and the internet for information.  Lots of information out there, but strangely very few answers.  Squamous cell cancer and Type II is fairly rare, and very aggressive.  The prognosis isn't great.

    To say I'm frightened and depressed would probably be an understatement - it looks very likely that this sort of cancer WILL come back.  Next time, the carboplatin won't work.  My mother died of breast cancer at 62.  Her father of stomach cancer in his late 70's.  I'm only 57, met my wonderful partner just three years ago, a man I love so much my heart aches.  We had dreams of retiring and growing eccentrically old together.  Now I'm wondering how much time I actually have left.  My cat is four - he may outlive me.

    Has anyone out there had anything similar to what I have?  I need some real hope...

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #43
    Almost 3 years out from surgery

    I will be three years out from surgery next month.  I had stage IVB.  I had two normal CT scans in the first year and a half.  My CA 125 was 8 at the last visit.  I get another one done in about 3 weeks.  At diagnosis, it was 94.  You'll be happy to hear that I've been NED even though I had the advanced cancer.  I always expect a recurrence, but knock on wood, haven't had one yet.  Just lucky, I guess.  I must have had a very good surgeon and oncologist.

  • Rewriter
    Rewriter Member Posts: 493 Member
    #44
    pinky104 said:

    Almost 3 years out from surgery

    I will be three years out from surgery next month.  I had stage IVB.  I had two normal CT scans in the first year and a half.  My CA 125 was 8 at the last visit.  I get another one done in about 3 weeks.  At diagnosis, it was 94.  You'll be happy to hear that I've been NED even though I had the advanced cancer.  I always expect a recurrence, but knock on wood, haven't had one yet.  Just lucky, I guess.  I must have had a very good surgeon and oncologist.

    Officially a five-year survivor of UPSC Stage 1a

    I got the all-clear at yesterday's appointment with my gyne-oncologist at Mt. Sinai Hospital in NYC. For those of you who will be uplifted by my news. I am now officially a five-year survivor. My treatment consisted of six rounds of carbo/taxol followed by three brachytherapy treatments.

    When I was diagnosed, I read everything I could about diet and made some major shifts in the types of foods I eat. I consume lots of:

     

    --Grains like quinoa, spelt, kasha, millet, oats

    --Seeds: pumpkin, flax

    --Vegetables, particularly kale, cucumbers, and other green and leafy plants

    --Legumes: Beans are your friends

    --Fruit: Berries, oranges, lemons and limes as seasoning...lots of GREAT fuit becoming available during the warmer months

    --Fish: Wild caught

     

    I avoid:

    --Sugar; I sweeten my oatmeal with mashed bananas and add fresh fruit to plain, nonfat yogurt. If I have a craving, I make a banana and yogurt milkshake with just those two ingredients. DO NOT EAT SUGAR!

    --Meat

    --Highly acidic foods. Many charts are available online; and the foods listed as acidic or alkaline may surprise you. Acidic foods are inflammatory and are associated with various disease processes in the human body.

     

    Blessings to all of you. Today, I am sending special love to Mary Ann.

     

     

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #45
    Rewriter said:

    Officially a five-year survivor of UPSC Stage 1a

    I got the all-clear at yesterday's appointment with my gyne-oncologist at Mt. Sinai Hospital in NYC. For those of you who will be uplifted by my news. I am now officially a five-year survivor. My treatment consisted of six rounds of carbo/taxol followed by three brachytherapy treatments.

    When I was diagnosed, I read everything I could about diet and made some major shifts in the types of foods I eat. I consume lots of:

     

    --Grains like quinoa, spelt, kasha, millet, oats

    --Seeds: pumpkin, flax

    --Vegetables, particularly kale, cucumbers, and other green and leafy plants

    --Legumes: Beans are your friends

    --Fruit: Berries, oranges, lemons and limes as seasoning...lots of GREAT fuit becoming available during the warmer months

    --Fish: Wild caught

     

    I avoid:

    --Sugar; I sweeten my oatmeal with mashed bananas and add fresh fruit to plain, nonfat yogurt. If I have a craving, I make a banana and yogurt milkshake with just those two ingredients. DO NOT EAT SUGAR!

    --Meat

    --Highly acidic foods. Many charts are available online; and the foods listed as acidic or alkaline may surprise you. Acidic foods are inflammatory and are associated with various disease processes in the human body.

     

    Blessings to all of you. Today, I am sending special love to Mary Ann.

     

     

    Congratulations Jill

    What a wonderful accomplishment.  You have worked very hard to reach this milestone.  Blessings to you, too.  May you have many more years of being cancer free.

  • Rewriter
    Rewriter Member Posts: 493 Member
    #46
    Ro10 said:

    Congratulations Jill

    What a wonderful accomplishment.  You have worked very hard to reach this milestone.  Blessings to you, too.  May you have many more years of being cancer free.

    Thank you, Ro

    I wish the same for you. I hope you are soon settled and enjoying being back in IL. Hope the weather warms up.

     

    Best,

     

    Jill

  • HellieC
    HellieC Member Posts: 524 Member
    #47
    Rewriter said:

    Thank you, Ro

    I wish the same for you. I hope you are soon settled and enjoying being back in IL. Hope the weather warms up.

     

    Best,

     

    Jill

    SO pleased

    I am SO pleased for you, Jill.  You "took your medicine" in the form of all the established treatments and then set about making your body a hostile terrain for cancer.  It worked!  I cannot tell you how happy I am for you that you've reaped the rewards and reached this milestone.

    With every good wish for the future

    Helen

  • Rewriter
    Rewriter Member Posts: 493 Member
    #48
    HellieC said:

    SO pleased

    I am SO pleased for you, Jill.  You "took your medicine" in the form of all the established treatments and then set about making your body a hostile terrain for cancer.  It worked!  I cannot tell you how happy I am for you that you've reaped the rewards and reached this milestone.

    With every good wish for the future

    Helen

    Blessed to have this community

    Helen--

     

    Your comments are always so warm and supportive and remind me of how blessed I am to have found this community. You all have been with me through my ups and downs.  We may not have met face to face, but you have become my good friends.

     

    I hold you all in my heart.

     

    Jill

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #49
    Rewriter said:

    Officially a five-year survivor of UPSC Stage 1a

    I got the all-clear at yesterday's appointment with my gyne-oncologist at Mt. Sinai Hospital in NYC. For those of you who will be uplifted by my news. I am now officially a five-year survivor. My treatment consisted of six rounds of carbo/taxol followed by three brachytherapy treatments.

    When I was diagnosed, I read everything I could about diet and made some major shifts in the types of foods I eat. I consume lots of:

     

    --Grains like quinoa, spelt, kasha, millet, oats

    --Seeds: pumpkin, flax

    --Vegetables, particularly kale, cucumbers, and other green and leafy plants

    --Legumes: Beans are your friends

    --Fruit: Berries, oranges, lemons and limes as seasoning...lots of GREAT fuit becoming available during the warmer months

    --Fish: Wild caught

     

    I avoid:

    --Sugar; I sweeten my oatmeal with mashed bananas and add fresh fruit to plain, nonfat yogurt. If I have a craving, I make a banana and yogurt milkshake with just those two ingredients. DO NOT EAT SUGAR!

    --Meat

    --Highly acidic foods. Many charts are available online; and the foods listed as acidic or alkaline may surprise you. Acidic foods are inflammatory and are associated with various disease processes in the human body.

     

    Blessings to all of you. Today, I am sending special love to Mary Ann.

     

     

    Terrific Jill!!

    Jill:

     

    I am so happy for you!.   I do follow a lot of your advice when it comes to food.  My only vice is that I use honey, but it is better than using artificial sweetners.   Thank you for all your posts!  

     

    Kathy

    P.S.  How's your dog?   I remember seeing how cute (he/she) was!

     

  • jazzy1
    jazzy1 Member Posts: 1,379
    #50
    Rewriter said:

    Officially a five-year survivor of UPSC Stage 1a

    I got the all-clear at yesterday's appointment with my gyne-oncologist at Mt. Sinai Hospital in NYC. For those of you who will be uplifted by my news. I am now officially a five-year survivor. My treatment consisted of six rounds of carbo/taxol followed by three brachytherapy treatments.

    When I was diagnosed, I read everything I could about diet and made some major shifts in the types of foods I eat. I consume lots of:

     

    --Grains like quinoa, spelt, kasha, millet, oats

    --Seeds: pumpkin, flax

    --Vegetables, particularly kale, cucumbers, and other green and leafy plants

    --Legumes: Beans are your friends

    --Fruit: Berries, oranges, lemons and limes as seasoning...lots of GREAT fuit becoming available during the warmer months

    --Fish: Wild caught

     

    I avoid:

    --Sugar; I sweeten my oatmeal with mashed bananas and add fresh fruit to plain, nonfat yogurt. If I have a craving, I make a banana and yogurt milkshake with just those two ingredients. DO NOT EAT SUGAR!

    --Meat

    --Highly acidic foods. Many charts are available online; and the foods listed as acidic or alkaline may surprise you. Acidic foods are inflammatory and are associated with various disease processes in the human body.

     

    Blessings to all of you. Today, I am sending special love to Mary Ann.

     

     

    YAHOO JILL~~

    I'm so happy for you and know you're on cloud 9!!!!  5 years NED...now that great news is worth yelling from the roof tops, ya think?

     

    I know over the years we've exchanged emails and postings and you as well have given great support to others here....we thank you!!  

     

    Few things I'd add to your list of diet changes --

    .  Probiotics -- be it supplements, raw dairy, fermented foods or kefir (These repair the gut and the compromised villi)

    .  Meat/poultry -- organic, hormone-free, antibiotic-free, only free-range, grass fed.  Commercially raised meats contain hormones and antibiotics and the animals are fed grains, results in meath that are high in Omega 6's which cause inflammation and  cancer growth.  

    .  9-10 cups/day organic veggies (or follow the DIRTY DOZEN list for which MUST be organic)  Make a green smoothie and ingest 4-5 cups...easy!

    .  Eat healthy fats from coconut oil, olive oil, avacado oil, and nuts (especially macadamia and hazelnuts) 

     

    When in doubt remember our #1 seller --  THE ANTI CANCER book, by Dr, David Servan-Schreiber

     

    I'd love to see more topics on keeping our terrains in healthy working order....

    Hugs and best to you Jill~

    Jan

     

     

     

  • Rewriter
    Rewriter Member Posts: 493 Member
    #51
    jazzy1 said:

    YAHOO JILL~~

    I'm so happy for you and know you're on cloud 9!!!!  5 years NED...now that great news is worth yelling from the roof tops, ya think?

     

    I know over the years we've exchanged emails and postings and you as well have given great support to others here....we thank you!!  

     

    Few things I'd add to your list of diet changes --

    .  Probiotics -- be it supplements, raw dairy, fermented foods or kefir (These repair the gut and the compromised villi)

    .  Meat/poultry -- organic, hormone-free, antibiotic-free, only free-range, grass fed.  Commercially raised meats contain hormones and antibiotics and the animals are fed grains, results in meath that are high in Omega 6's which cause inflammation and  cancer growth.  

    .  9-10 cups/day organic veggies (or follow the DIRTY DOZEN list for which MUST be organic)  Make a green smoothie and ingest 4-5 cups...easy!

    .  Eat healthy fats from coconut oil, olive oil, avacado oil, and nuts (especially macadamia and hazelnuts) 

     

    When in doubt remember our #1 seller --  THE ANTI CANCER book, by Dr, David Servan-Schreiber

     

    I'd love to see more topics on keeping our terrains in healthy working order....

    Hugs and best to you Jill~

    Jan

     

     

     

    Cloud 9, Trixie Delight, and probiotics!

    It's hard to live on Cloud 9 when so many in our community are struggling, but I am feeling much more peaceful that I did even a week ago.

    Still, I take nothing for granted and continue to watch my diet, stress level, and daily exercise. It's gorgeous where I live--in a community called Carroll Gardens, Brooklyn, which certainly lives up to its name with the magnolias, mimosas, cherry blossoms, and pear trees--and I enjoy walking and exploring.

    Kathy, thank you SO much for remembering my dog. Trixie is such a wonderful dog and has been affectionately and attentively by my side through this whole process. She is so smart and playful and was always able to keep my spirits up when I was at my lowest point.

    Jan, thank you so much for your suggested dietary changes; I am right there with you! I don't eat meat and always choose free-range, hormone-free chicken. I take a daily probiotic called PB8, eat a big bowl of homemade organic vegetable soup and a huge salad with lots of fresh vegetables and 1/2 avocado each day, use plenty of olive and coconut oil, snack on a handful of nuts and make a great kale salad with toasted hazelnuts, make either a fresh vegetable or a yogurt and banana smoothie each day...I have major OCD when it comes to eating healthy food, but I take GREAT pleasure in preparing my meals.

    I, too, would love to hear how other women are keeping themselves healthy. BEST of health to everyone.

     

    Love,

    Jill

     

     

     

     

  • lawyerserv
    lawyerserv Member Posts: 5
    #52
    upsc

    Hi Cat, I have been watching this board for nearly two years.  I was diagnosed with stage lllc UPSC on 5/5/11.  I had davinci surgery, followed by 6 chemos of carboplatin/taxol delivered in a "sandwich" with 5 weeks of pelvic ratiation and 2 brachytherapies.  I have been NED ever since.  When you read all the stuff on-line its very depressing, but you need to know that there are survivors.  My radiation oncologist said he knows survivors of this cancer, and a top researcher in UPSC told me he has a patient who is into her 7th year. On 5/5/13 I will be two years NED.  Two years is a big anniversary, then three, then five.  I have done lots of research into this and will try to post more, but right now I am at work!  Best of luck to everyone and LONG LIFE. Arlene

  • beila
    beila Member Posts: 97 Member
    #53
    to Arlene

    thank you for your uplifting note

    I'm sure I am not the only one curious...who and where is this UPSC top researcher???

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #54
    beila said:

    to Arlene

    thank you for your uplifting note

    I'm sure I am not the only one curious...who and where is this UPSC top researcher???

    To nthemouse

    It's hard not to be discouraged. Don't give up hope that carboplatin will not work in future. It has worked for me with multiple recurrences.

    mary Ann

  • tequila
    tequila Member Posts: 15 Member
    #55
    CHEMO VERSUS CHEMO & RADIATION

    I am new to this site but I have been reading your comments for months. Thank you for contributing, I have learned so much from all of you.

    I was diagnosed last fall with UPSC grade3 Stage 3A in a routine pap test. I had no symptoms. I am 67 years old but very active - aerobics, inline skating, curling, walk 4-5 miles a day. I am also a DES daughter, and strangely enough my brother also has a very rare form of cancer. I had surgery in October 2012 - the cancer was 1 out of 11 mm invasion into  the wall of the uterus but had gone into the right fallopian tube - all lymph nodes and washing were negative. I did not have any treatment after the surgery. My CA125 was 13.3 prior to the surgery, it was 8.9 four months after the surgery and two months later it is now 10.4. Prior to the last CA125 I pushed for a CT skan, which showed an enlarged lymph node in the pelvic area. I then had a PET skan which shows a 1.1 cm left external iliac lymph node that is intensely hypermetabolic. My doctor has recommended 6 rounds of dose dense chemotheraphy which I am scheduled to start next week.

    In the province that I live in Canada they only do chemo for UPSC but yet in another province they do chemo and radiation. In all the studies that I have read it seems that the best chance for the least amount of recurrences is with chemo and radiation. It appears that most of you on this site had this type of treatment as well. I am hoping to go to the Mayo Clinic in Scottsdale for a second opinion.

    I would like to know if those of you who did chemo and radiation did standard chemo or dose dense chemo and what type of radiation that you had.

    I know that this type of cancer is closer to ovarian cancer than any other type of endrometrial cancer, and I think I am being treated as if it was ovarian cancer. I don't feel that my doctor gives me enough information and I often wonder if this is because they don't often see this type of cancer.

    Cathy in Canada

  • Love23
    Love23 Member Posts: 8 Member
    edited April 2019 #56
    artist49 said:

    any survivors?
    I've posted my story before but I feel that the dismal response to your question leaves everyone needing a little ray of hope , so here I go again. I had surgery in September, 2010 and was diagnosed with UPSC stage 4 grade 3 with cancer found in 39 lymph nodes. A patient at Sloan, I was put on a clinical trial - avastin, carboplatin and Ixabepilone
    for 6 treatments and then avastin every 3 weeks for maintenance. It is now Nov. 2012 of course and I remain NED and feeling great. Given the poor prognosis of this disease and my advanced stage, I despaired of ever attending my grandson's Bar Mitzvah or ever seeing any of my grandchildren get married. Two weeks ago I attended the Bar Mitzvah and it was beautiful. In two weeks from now my oldest granddaughter is getting married! There is hope
    for everyone. We must keep looking forward because the statistics belong to the past and the future belongs to us. We must learn from each other and explore every avenue available to us. Conventional treatment, diet, exercise - leave no stone unturned.

    Thank you so much for the

    Thank you so much for the encouragement hope u are well

  • MAbound
    MAbound Member Posts: 1,168 Member
    #57
    Love23 said:

    Thank you so much for the

    Thank you so much for the encouragement hope u are well

    Hi

    I see that this is your first post. Welcome to the group, but sorry that you had a need to find us. I presume you've been diagnosed with UPSC since you chose this old thread for your first post? How are you doing?

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