New diagnosis UPSC - Please help

viejachinita
viejachinita Member Posts: 7
edited March 2014 in Uterine/Endometrial Cancer #1
Dear all,

I am writing on behalf of my mother Belinda. She was recently diagnosed with Level 3C UPSC. She is in her early 50's, presented NO symptoms and was diagnosed just a month ago with this terrible decease. We are from the Dominican Republic, and we've been in Miami for this whole procedure. She is just one week removed from surgery and has her first appointment with the oncologist next thursday to talk about the quimioteraphy.

During these past couple of weeks I have tried to do everything to help my mother overcome her psycological barrier. She used to be an energetic and active woman, and now she is always depressed, in pain and defeated. I am very worried because we haven't even started the hardest part yet and she is considering giving up without a fight.

I was so lucky to have found this message board and reading your stories. I quickly told my mother about your discussion board and how many of you are supporting each other. I want to let her know that she is not alone in this. I am trying to convince her to join in and connect with you girls but she is so depressed that she won't do it.

I don't know what else to do, and I know that a lot of you can share your experience with her and maybe give her some HOPE and something to look forward to. If maybe you could write her a personal email and ask her to join, maybe share a message and let her feel that she is not alone and that you have all been through this. Her email is wibellyke@hotmail.com

Thank you very much and God Bless you all,

Willie

Comments

  • brissance
    brissance Member Posts: 192
    #2
    Hi Willie and Willie's Mom

    I remember the stunned dispair.  You are normal to have fear and pain.  You are normal to not know what to do.  We all had varying amounts of this.  Once you get past the shock you need to regroup.  You are about to fight a battle for your life.  I know they say with stage 3 you can't defeat it. OK.. but there are many here who live with the same situation.  It becomes a chronic illness, not unlike say diabetes.  You may always have some sort of treatment or monitoring, but you can live a very normal life.  You are so young.  You probably will have or already have grandchildren who will look to you for guidance by example.  You will be able to teach them so much with the way you handle this battle with grace and courage.  So, Willie's mom, I already know Willie is a sweetheart, and she had to get that from her mom..  You are normal to have the fears and withdraw at the beginning but prepare to do battle prepare to fight and win.  God bless you and my prayers are with you.   Patty

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited September 2016 #3
    Willie,

    Willie,

    My mom has also just been diagnosed with UPSC Stage 3C1.  Like you, I am experiencing anxiety, even more than my mom. I notice your post was more than 7 years ago, and I hope your mother is doing well.

    Love,
    Rebecca

  • brissance
    brissance Member Posts: 192
    #4
    Yikes

    Didn't look at the date  I too hope all went well.  

    How did that pop up to the top of my list and there were no responses?  Yet, I should have noticed the dates.   Good catch Rebecca.  

  • TracyGB
    TracyGB Member Posts: 8
    #5
    Diagnosed August 2015

    Hi,  I was diagnosed August 2015.  I had surgery chemo and radiation which seems to be pretty standard.  I wish I had known there was a way to reach out to women with UPSC back then.  All cancer is scary but this one seems to take the cake with its rarity.  I am in my mid 40s and would love to talk to someone who has gone through this and doing well.  The long term prognosis percentages are terrifying.  I don't like to talk to my family about it so they dont worry..  They also just don't completely understand the underlying fear of a recurrence.  So far I am doing good and try not to dwell on it but it has changed me.  I tend to not wait to do things.  my family notices I have less boundaries.  I say what is on my mind and am freer in my decision making.  Has anyone else noticed behavior changes?  

  • MAbound
    MAbound Member Posts: 1,168 Member
    #6
    brissance said:

    Yikes

    Didn't look at the date  I too hope all went well.  

    How did that pop up to the top of my list and there were no responses?  Yet, I should have noticed the dates.   Good catch Rebecca.  

    Patti!!

    Sooo happy to see you and your avatar again! You've been missed!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited January 2017 #7
    Welcome Tracy. I'm glad you

    Welcome Tracy. I'm glad you found us. I think we all go through some changes after fighting this beast!  There are many women on this board that are doing well. You will find lots of support, information, and candid openess here. Don't dwell on the stats you read out there in google land. Many are outdated.

    Family can only understand so much. Really, you have to live this to get it. That's why this group of ladies is so critical to all of us.

    I hope you find some time to read some of the threads. This one is old so if you have questions, you may want to start a new topic.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789
    #8
    TracyGB said:

    Diagnosed August 2015

    Hi,  I was diagnosed August 2015.  I had surgery chemo and radiation which seems to be pretty standard.  I wish I had known there was a way to reach out to women with UPSC back then.  All cancer is scary but this one seems to take the cake with its rarity.  I am in my mid 40s and would love to talk to someone who has gone through this and doing well.  The long term prognosis percentages are terrifying.  I don't like to talk to my family about it so they dont worry..  They also just don't completely understand the underlying fear of a recurrence.  So far I am doing good and try not to dwell on it but it has changed me.  I tend to not wait to do things.  my family notices I have less boundaries.  I say what is on my mind and am freer in my decision making.  Has anyone else noticed behavior changes?  

    Tracy, so sorry to hear of

    Tracy, so sorry to hear of your diagnosis and that you had to go through the treatments by yourself. We're a great group and you'll find lots of support here. Nothing is off limits with us. Like Cindy mentioned, starting a new thread is the easiest way to be able to follow along with all the replies you'll be getting.

    To answer your question, yes, getting this last cancer diagnosis (uterine MMMT - another rare cancer like UPSC) has changed my behavior in so many ways that I can't even count them. I believe that the changes are for the better but I guess only time will tell! 

    Please don't spend too much of your energy worrying about the stats you read online. The only stat that counts is you - you are a stat of one! If you're doing okay and finding your way back to a "new normal" then that is all that matters! Hang in there! Kim

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited January 2017 #9
    Hi Tracy,

    Just wanted to say hello, I do not have UPSC but there is a lot of info here on almost anything you can think of.  There is a search at the top where you can look for something specific.  Also, if you find someone you think has your type and want to find out more about their journey, many have filled out their profile so if you click on their pic it will take you there and you can read all their info in one place.

    Hope you'll feel free to come, look around, ask questions and link arms and walk along with us.  It's always so helpful to chime in because we are all so different and experience things in our own ways so sharing might help someone else who is struggling.   (((HUGS)))

  • tripsie
    tripsie Member Posts: 11
    #10
    TracyGB said:

    Diagnosed August 2015

    Hi,  I was diagnosed August 2015.  I had surgery chemo and radiation which seems to be pretty standard.  I wish I had known there was a way to reach out to women with UPSC back then.  All cancer is scary but this one seems to take the cake with its rarity.  I am in my mid 40s and would love to talk to someone who has gone through this and doing well.  The long term prognosis percentages are terrifying.  I don't like to talk to my family about it so they dont worry..  They also just don't completely understand the underlying fear of a recurrence.  So far I am doing good and try not to dwell on it but it has changed me.  I tend to not wait to do things.  my family notices I have less boundaries.  I say what is on my mind and am freer in my decision making.  Has anyone else noticed behavior changes?  

    Dealing with UPSC

    My advice to you is to stop looking up odds, prognoses, etc. They just made me crazy and I had a lot of sleepless nights. I have been under treatment for over three years now with various different cocktails. For the last year I have been on avastin which cuts off blood supply to cells...lovely...but I have none of the side effects I had with other trejatments..It has been working nicely, However, in the last few months there have been slight increases in Ca 125 and scan....tiny changes. It's been a great treatment for me because it has just become chronic..like diabetes someone had mentioned. You have it..it' not going away any time soon... as for behavior, I am more open, care less about what others may think. When something like this happens, of course it changes us...some good things, some bad..ex:very impatient often and easily put in a bad mood which hardly ever happened before. my family understands and I apologize and we move on. life is short, be happy, do ,say what makes you happy and others will have to adapt......or not. After all, what are we waiting for?

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,358 Member
    #11
    MAbound said:

    Patti!!

    Sooo happy to see you and your avatar again! You've been missed!

    MAbound, Patty is still

    MAbound, Patty is still missing.  Those are old posts of hers from September.  I hope she is ok, but I worry. 

  • TracyGB
    TracyGB Member Posts: 8
    edited January 2017 #12
    Thank you

    thank you for reaching out and sharing with me.  I was afraid this forum was not going on anymore since it had been so long since anyone posted anything.  I will take your advise and start a new thread next time I post.  I wish you all well and hope you are feeling and doing ok.  Till next time! Tracy

  • DottieDean
    DottieDean Member Posts: 36
    #13
    Why are the postings all s

    Why are the postings all s old?  Are there any more current posts?

     

     

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited September 2017 #14
    Are you using the search feature?

    If you are they come up with the oldest first I think- if you go to the very bottom and hit last it will take you to the most recent ones.  Hope that helps!  If not ask away and someone will come up with a better answer Laughing

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #15
    DottieDean said:

    Why are the postings all s

    Why are the postings all s old?  Are there any more current posts?

     

     

    Hi DottieDean,

    Hi DottieDean,

    Welcome. If you look on the left side of your screen you will a pinkish brown box of information. Click on Discussion Boards and it will bring up a long list of types of cancers. Go to the bottom of the first section and click on Uterine. This will take you to the most recent/active discussions taking place.

    Hope this helps!

    Cindi

  • Decor620
    Decor620 Member Posts: 3
    #16
    My mother- UPSC 1B diagnosed Oct 2017

    Hello all,

    I am so glad to have found this discussion board for my personal information and seeking support for my mother. As stated in the subject line, my mother was diagnosed with UPSC just this past month... it's all moved so quickly. She's 61, noticed some recurring bleeding (unusual for post-menopausal, of course)... made an appointment with her GYN and with an abnormal pap, they did a biopsy. WIth less than a week between the initial appointment, she had the biopsy and was immediately scheduled for a complete hysterectomy- (cervix, ovaries, uterus, fallopian tubes, and lymph nodes). Her Pathology report came back confirming the biopsy results as UPSC, staged at 1B. 13/17 (layers, I assume?) of uterine wall affected by the cancer. She was told she is to have around 6 months of Chemo (not sure which kind yet) and Radiation.

     

    I'm in a stage of shick as this has been a whirlwind... it's been all so fast and scary. I know my job as a daughter is to support her, but also research and educate ourselves. I look forward to learning about you ladies, and learning more about this rare cancer type as we go on.

     

    Thank you,

    Decor620 :-)

  • MAbound
    MAbound Member Posts: 1,168 Member
    #17
    Welcome Decor620

    Glad you found us. Your mom is so lucky to have you to help her through all of this, but it's a lot for family supporters to cope with too. 6 rounds of chemo followed by radiation seems to be what most of us go through, so have hope that others have tread this path before the two of you and that it is doable. 

    Getting through treatment won't be fast though. The infusions are timed to be given when cancer cells are at there most active, so 6 rounds of chemo is likely to take at least 18 weeks (plus about 3 weeks after the last to recover). It could take longer if they suspend chemo after three treatments to deliver the radiation therapy and then finish with the last 3 treatments in what's known as the sandwich technique. It all depends on what your mom's oncologist feels is best course of action for her particular circumstances. 

    If you have questions, need to vent, or just need some encouragement to keep on doing what has to be done, this is a great place to come. We may not always have the answers, but we'll do our best to help however we can. You are not facing this alone.

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