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My Mother newly diagnosed with UPSC Stage 3a....Looking for Support

treebee
Posts: 9
Joined: Feb 2013

Hello brave ladies!  I have been reading your post for a few weeks and finally decided I needed to join in behalf of my beautiful mother.  I will be trying to get her to join soon as well.  Her story is probably typical of many.  She is a very young 70 (I have more grey hair than her!) and she started bleeding late last year.  After full hysterecotomy, she was surgically staged at 3a with a mixed adenocarcinoma tumor in her uterus- including the infamous UPSC.  The cancer was more than 1/2 through her uterus muscle and spread into a small tumor in her ovary. She also has lymphovascular invasion but the 10 extracted lymph nodes were negative.  Next month she starts 6 cycles of chemo (taxol and carboplatin).  They also encouraged her to do the sandwich of radiation but she is hesitant to do such.  Has anyone had this "sandwich treatment" and/or is it superior over chemo alone?  It is very difficult because I want to respect her treatment decisions but I also want her to fight with everything she's got!  She has so much to live for- two grandchildren, two more grandchilden due this year, four daughters who adore her and a husband of over 40 years.  She is a wonderful mother and fantastic Nana...her heart is gold and she is our world!  We are all tremendously anxious about the prognosis as well as what to expect with the chemo side effects.  This just feels like a nightmare that we can't wake from!  Any advice on how to support her and/or personal experiences would be gratefully appreciated. My heart goes out to you fine ladies, your encouragment and bravery is to be admired and mirrored!  You are all heroes in my book! 

Best,

T

runwithloki
Posts: 16
Joined: May 2012

Hi T,

Sorry to hear about your mom's diagnosis. I'm also on here because of my mom - also a very young and otherwise very fit and healthy 67-year old. My mom was diagnosed last year, stage 3C endometrial cancer, and I don't really know how her diagnosis compares to UPSC. She did 6 rounds of the same chemo - carb/taxol - and I wanted to send out some words of encouragement that the chemo was not all that bad for her. Despite all of us dreading the word "chemo," she did not find the treatments intolerable. The anti-nausea drugs were great and her main issues were just being tired for a couple of days and constipation. The spacing of chemo treatments allowed her to recover from each one before starting another, and she was able to carry on with much of what she was doing before.

She was also offered a clinical trial in which she may have been randomly assigned to an arm in which they did the sandwich treatment. She didn't opt for this but did do radiation after chemo. Now that I'm doing more research into this (her disease recently advanced to stage 4), it does look like there is some evidence that the sandwich method improves outcomes, so I almost wish she had gone that route. So hard to say, though, as she did experience serious side effects with radiation and maybe those would've been worse if she had done the sandwich treatment.

There are some women on here who have done the sandwich treatment option, so it'd be good to hear from them about their experience. I would recommend asking for any research results that the oncologist can point you to, to see if you can evaluate the likelihood of improved outcomes vs. the treatments' side effects.

Best of luck to you and your mom-

treebee
Posts: 9
Joined: Feb 2013

Hi Runwithloki!  Thanks so very much for your response and your Mom's experience,I will share with my Mom.  You're right , it is so easy to second-guess treatment options but I am sure your Mom did the right thing especially if she had serious side effects from the radiation, it may have prevented her from doing the full chemo if it was "sandwiched".  I wish you and your Mother the best....from my reading on these threads it sounds as though it can be treated as a chronic disease and that gives us precisou time with our loved ones!  Everyone on this site fighting UPSC call themselves "the UPSC Sisterhood".  We'll have to deem ourselves "Daughters of the UPSC Sisters" if they will so graciously adopt us :)  It seems like this cancer strike the sweetest women on Earth and that is a terrible shame!  Thanks again for the encouragement.  Wish you and Mom the Best!!!!!

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

Hi Treebee, so sorry about your mother!  Seventy is young now days!  I have UPSC and had the standard six treatments Taxol/Carboplatin with five brachytherapy.  I highly recomend the sandwich treatment...they wouldn't do anything but the sandwich at M.D. Anderson!  I am blessed with 35 months out of chemo and very few side effects from that or radiation.  Everyone is sooooo different, but I really had NO effects from the radiation at all....really!  It went so well that I had two treatments on two weeks and then had THREE treatments in one week, Monday, Wednesday, and Friday.  That same Friday I had chemo and drove there and back by myself, 90 minutes one way.  So from my point of view, hit it hard and fast and get it done!  Best, Debrajo

susangr
Posts: 63
Joined: Oct 2010

I have UPSC 1a with lymph vascular space involvement but no positive nodes. I was treated at MD Anderson and had external pelvic radiation daily x 5 weeks Monday-Friday with chemo every week and 5 brachytherapy treatments towards the end. This was followed with chemo every 21 days x 5 treatment.  The purpose of having the radiation with the chemo is that the radiation is suppose to make the chemo work better.  Getting the chemo weekly is called the "dose dense" approach.  You get slightly less chemo weekly and therefore can tolerate it better but over the course of the 5 weeks you get more chemo than a single 21 day dose.  Getting chemo weekly is suppose to theoretically kill any rapidly dividing cancer cells more frequently too.  

The treatments are doable. With UPSC the plan was to hit it with everything you have because if it recurs it is considered incureable.   

Good luck.....we are here for you!     Susan

treebee
Posts: 9
Joined: Feb 2013

Hi Susangr...want to sincerely thank you for your response and detailed information.  It is so interesting how these treatments seem to be tailored to each person.  I am going to share this with my mom as well as her doctor find the best approach especially since she is at stage 3a.  You really drive home the point that even at stage 1A this is nothing to fool around with!  I am so glad you responsed so well to treatment you must be a trooper!  March On!!!  :)

treebee
Posts: 9
Joined: Feb 2013

Hi Debajo.  Thank you so much for your response.  I have been following you for some time (not a stalker lol) and you are an inspiration!  I wish we lived close to MD Anderson it sounds like a fantastic treatment center.  In fact, a lot of my research on UPSC was found on their website.  I am going to share this with my Mother (she s not very computer saavy but that can be fixed!).  I wish you the very best and thank you again for sharing your experience.

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I had the sandwich treatment in 1/09.  I had the 3 chemo treatments followed by 28 radiation treatments and a 28 hour internal radiation treatment, followed by three more taxol/carbo treatments.  When I had my radiation treatments I was encouraged to have a full bladder before each treatment.  This kept the bowel away from the treated area.  I did not have the diarrhea isssues that so many talk about from the radiation. 

UPSC is a very aggressive cancer, so most doctors recommend aggressive treatment.  I wish your Mother, you and her family good luck with the treatments.  The treatments were not as bad as I feared.  The medicines they have to help prevent side effects are so helpful.    

Sorry you have to join this site.  Feel free to come back with any questions or concerns you may have.  In peace and caring.

treebee
Posts: 9
Joined: Feb 2013

Ro10!  I have been following your pretty face too!!!  Thank you sooooo very much for your encouragement and solid advice.  I am now hoping she'll go for the radiation as well and hearing that many have faired well is reassuring.  My poor Mom says she is in a fog when she thinks about it all...probably still in shock???  So many decisions and so little time to mule over them.  We honestly thought once her hysterectomy was over she was out of the woods so it is understandable- being in shock.  I am almost thankful she is not on the Internet 24/7 like I was which resulted in nothing but insomenia along with fear and anxiety.  I resolved to only look up the threads of you brave women who prove your not some statistic but individuals living rich lives.  Thanks again for you posts- you never know how many lives you touch!  T

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