CSN Login
Members Online: 16

You are here

New diagnosis UPSC - Please help

viejachinita
Posts: 7
Joined: Feb 2009

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

brissance's picture
brissance
Posts: 192
Joined: May 2016

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
Posts: 177
Joined: Aug 2016

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's picture
brissance
Posts: 192
Joined: May 2016

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.  

MAbound
Posts: 341
Joined: Jun 2016

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1549
Joined: Mar 2013

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

TracyGB
Posts: 7
Joined: Dec 2016

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?  

Kvdyson's picture
Kvdyson
Posts: 575
Joined: Jan 2016

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

tripsie
Posts: 7
Joined: Dec 2016

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?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1033
Joined: Jun 2015

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

Nellasing
Posts: 314
Joined: Oct 2016

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)))

TracyGB
Posts: 7
Joined: Dec 2016

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

Subscribe to Comments for "New diagnosis UPSC - Please help"