Mother Diagnosed with UPSC Stage 4b

RachAndMom
RachAndMom Member Posts: 8
edited March 2014 in Uterine Cancer #1
My mother is 60 years old and was recently diagnosed with Stage 4b UPSC. She is a 9 year survivor of breast cancer for which she received Tomoxifen treatments which may have contributed to her developing endometrial cancer. I would like to thank all of you who have posted about your experiences, treatments, fears, hopes, words of encouragement etc and family/friends posting about their loved ones. It is helpful to know that we are not alone. My mother is in NY (suburbs just outside Manhattan) and had her hysterectomy (9 days ago) at Memorial Sloan Kettering. She has asked me to help her find an oncologist with a lot of experience with patients with Stage 4b UPSC-but a holistic approach is also very important to her. If anyone has any recommendations for an oncologist with expertise in advanced UPSC in the NY/Northern NJ/South Western Connecticut area as well as recommendations for alternative approaches we would be very grateful to hear about them.
Thank you,
Rachel
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Comments

  • Kris Ann
    Kris Ann Member Posts: 26
    Hi Rachel,
    My mom was also

    Hi Rachel,

    My mom was also stage 4 upsc.. diagnosed in March of 2008. She was 61. She was treated at Dana Farber in Boston. She went thru her treatments and some hurdles for sure but she is actually fine now.. she just had a ct scan March 4th and it was clear. Stay hopeful!

    Kristin
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Rachel,
    My mom was also

    Hi Rachel,

    My mom was also stage 4 upsc.. diagnosed in March of 2008. She was 61. She was treated at Dana Farber in Boston. She went thru her treatments and some hurdles for sure but she is actually fine now.. she just had a ct scan March 4th and it was clear. Stay hopeful!

    Kristin

    your mom with stage 4 upsc

    hi kristin,

    that is such great news re: your mother. i'm in my late 60s, diagnosed with stage 4 upsc may'09. had a radical hysterectomy then 6 infusions of chemo, 3 weeks apart. it's been 4 months since treatment, and so far so good though i' m having another ca125 tomorrow. i'm wondering if you would be willing to say what treatments your mother has gone through, and what hurdles there were for her. i'd greatly appreciate hearing your mom's experience, in as much detail as you and she care to share. and what she's doing now, if anything in particular to stay healthy.

    thanking you in advance,
    maggie
  • Kris Ann
    Kris Ann Member Posts: 26

    your mom with stage 4 upsc

    hi kristin,

    that is such great news re: your mother. i'm in my late 60s, diagnosed with stage 4 upsc may'09. had a radical hysterectomy then 6 infusions of chemo, 3 weeks apart. it's been 4 months since treatment, and so far so good though i' m having another ca125 tomorrow. i'm wondering if you would be willing to say what treatments your mother has gone through, and what hurdles there were for her. i'd greatly appreciate hearing your mom's experience, in as much detail as you and she care to share. and what she's doing now, if anything in particular to stay healthy.

    thanking you in advance,
    maggie

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    filling me in on your mom's experience
    hi kristin,


    i'd be so happy for you to fill me in on you mom's experience and progress. she's such a hope to all of us. my personal email address is :
    [email protected] i so look forward to hearing from you.

    thanx so much, kristin.
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    oops, i'm so sorry re: all these posts. no way to delete.
    not sure what happened, but so sorry to bother everyone with all these posts. i wish there were a way to delete. if someone knows how to do this, i'd appreciate hearing about it.
    thanx, maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    maggie



    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin


  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    maggie



    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    .
    maggie

    .
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Kris Ann said:

    Hi Maggie,
    I will fill you

    Hi Maggie,

    I will fill you in on the whole thing.. but do you have an email address.. sometimes i feel like this site is hard to navigate. i find it confusing. I'd rather send you an email if possible..

    Thanks, Kristin

    thanx

    thanx
  • RachAndMom
    RachAndMom Member Posts: 8

    oops, i'm so sorry re: all these posts. no way to delete.
    not sure what happened, but so sorry to bother everyone with all these posts. i wish there were a way to delete. if someone knows how to do this, i'd appreciate hearing about it.
    thanx, maggie

    Stage 4 UPSC
    Kristin-Thank you for sharing the wonderful news about your mom. I too would be grateful to learn of the details of her case and any suggestions you might have. My email address is : [email protected]
    Maggie-glad to hear that your treatments have gone well so far. We are meeting with an oncologist for the first time tomorrow to discuss my mother's treatment plan-it is all very overwhelming but we are trying to stay strong.
    Rachel
  • maggie_wilson
    maggie_wilson Member Posts: 596
    your mom with stage 4 upsc

    rachel,

    sure hope your mother is recovering well from her surgery, i'm sure it was fairly radical as was mine and kirsten's mother's as well. sounds like your mother, kirsten's mother and i are all around the same age, and have had same diagnosis. since my chemo, i've been with an acupuncturist who has been prescribing herbs for me, as well as twice monthly acupuncture. i also do body work once a week. should be doing a little more exercise, i'm afraid to say. i too appreciate a more holistic approach at this point.

    i'd be interested in what the recommended treatment plan is for your mom, if you would want to say. hopefully, you, kristin and i can stay in touch, as well as anyone else who shares the same diagnosis, stage, age, etc. or who just wants to be part of this. there just is so little known about this cancer, that it's really up to us to treat ourselves, after the initial surgery and chemo or radiation. i do want to mention a hopeful small movie by a woman film maker named barbara hammer, who had stage 3 ovarian cancer and filmed her treatment. she's very highly regarded as an experimental artist, and has already won awards for this film called "a horse is not a metaphor." she's been surviving now for about 3 years, and credits riding horses, and her love of horses as helping her heal. she's actually quite a city girl, so this is a major departure for her, i think. she's also in her late 60s, and now very energetic, and going around the country publicizing a book she's just written. so , she's an inspiration. i haven't seen her film yet myself, but have ordered it.

    hope you and your mom are holding up as well as can be expected, and staying hopeful.

    warmly,
    maggie
  • A1pena
    A1pena Member Posts: 92

    your mom with stage 4 upsc

    rachel,

    sure hope your mother is recovering well from her surgery, i'm sure it was fairly radical as was mine and kirsten's mother's as well. sounds like your mother, kirsten's mother and i are all around the same age, and have had same diagnosis. since my chemo, i've been with an acupuncturist who has been prescribing herbs for me, as well as twice monthly acupuncture. i also do body work once a week. should be doing a little more exercise, i'm afraid to say. i too appreciate a more holistic approach at this point.

    i'd be interested in what the recommended treatment plan is for your mom, if you would want to say. hopefully, you, kristin and i can stay in touch, as well as anyone else who shares the same diagnosis, stage, age, etc. or who just wants to be part of this. there just is so little known about this cancer, that it's really up to us to treat ourselves, after the initial surgery and chemo or radiation. i do want to mention a hopeful small movie by a woman film maker named barbara hammer, who had stage 3 ovarian cancer and filmed her treatment. she's very highly regarded as an experimental artist, and has already won awards for this film called "a horse is not a metaphor." she's been surviving now for about 3 years, and credits riding horses, and her love of horses as helping her heal. she's actually quite a city girl, so this is a major departure for her, i think. she's also in her late 60s, and now very energetic, and going around the country publicizing a book she's just written. so , she's an inspiration. i haven't seen her film yet myself, but have ordered it.

    hope you and your mom are holding up as well as can be expected, and staying hopeful.

    warmly,
    maggie

    stage 4b
    Hi There,

    My mom was recently re-staged to 4b because of distant lymph node involvement :( So far she has done 6 weekly treatments of carbo/taxol and will have her 7th tomorrow- praying for a lower ca-125 number! I would love to keep in touch and hear how each of you are doing with treatements etc. Kris- if you could email me your mom's story- that would be great- [email protected]

    Kind Regards,

    Amanda
  • Ladyebc
    Ladyebc Member Posts: 9
    I am an almost 8 yr survivor of stage 3C UPSC and had my surgery and all treatment chemo & radiation at MSKCC both in NYC at Memorial and on LI at Commack and Rockville Center.

    wondering why is your mom not staying with this institution for her treatment???
  • Ladyebc
    Ladyebc Member Posts: 9
    I am an almost 8 yr survivor of stage 3C UPSC and had my surgery and all treatment chemo & radiation at MSKCC both in NYC at Memorial and on LI at Commack and Rockville Center.

    wondering why is your mom not staying with this institution for her treatment???
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Ladyebc said:

    I am an almost 8 yr survivor of stage 3C UPSC and had my surgery and all treatment chemo & radiation at MSKCC both in NYC at Memorial and on LI at Commack and Rockville Center.

    wondering why is your mom not staying with this institution for her treatment???

    treatment for upsc 8 year survivior

    that is such great news to hear that you're an 8 year survivor of upsc, stage 3. would you be willing to say exactly what your treatment consisted of, and what you've done post treatment? how often you had monitoring, and what kind? and anything else you think relevant to your longevity. thanx so much for posting.
    best,
    maggie
  • A1pena
    A1pena Member Posts: 92

    your mom with stage 4 upsc

    hi kristin,

    that is such great news re: your mother. i'm in my late 60s, diagnosed with stage 4 upsc may'09. had a radical hysterectomy then 6 infusions of chemo, 3 weeks apart. it's been 4 months since treatment, and so far so good though i' m having another ca125 tomorrow. i'm wondering if you would be willing to say what treatments your mother has gone through, and what hurdles there were for her. i'd greatly appreciate hearing your mom's experience, in as much detail as you and she care to share. and what she's doing now, if anything in particular to stay healthy.

    thanking you in advance,
    maggie

    ca125
    Hi Maggie,

    Wanted to check in with you and see how your ca125 number came back! Hoping it comes back normal :)

    Kind Regards,

    Amanda
  • wannaknow
    wannaknow Member Posts: 12

    treatment for upsc 8 year survivior

    that is such great news to hear that you're an 8 year survivor of upsc, stage 3. would you be willing to say exactly what your treatment consisted of, and what you've done post treatment? how often you had monitoring, and what kind? and anything else you think relevant to your longevity. thanx so much for posting.
    best,
    maggie

    PLEASE SHARE ..8 YEAR SURVIVIOR!!!
    I HAVE AN 11 YEAR OLD DAUGHTER..PLEASE SHARE YOUR STORY..AND TREATMENT WITH US! I HAVE TO BEAT THIS OR MY DAUGHTER WILL BE ALONE ...HELP ME PLEASE!!!!!!!!!
    ALSO..MY EMAIL ADDRESS IS [email protected]
    love, kim
  • nempark
    nempark Member Posts: 681
    What is USPC cancer?
    Please explain.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    A1pena said:

    ca125
    Hi Maggie,

    Wanted to check in with you and see how your ca125 number came back! Hoping it comes back normal :)

    Kind Regards,

    Amanda

    ca 125

    hi amanda,

    just came across your post. my last ca 125 was 21; it had been 18 a month ago. since i've had ca 125s irregularly, it's hard to get a true reading. as my doctor said, these last 2 could be normal fluctuations, which we can't really know. i should have them done every 3 months, so we could probably have a better sense of what they mean.

    thanx for asking.

    maggie