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Stage 4b UPSC

donnaparamore
Posts: 12
Joined: May 2016

My 71 year old mother was just diagnosed last Wednesday...looking for any information from anyone....

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

If you do a search of UPSC you will find a wealth of information.  I'm Stage II, Grade 3 UPSC.

Love,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

This site contains a wealth of information. Do a search here for UPSC and you will get a lot of up to date information. DONT go on the Internet, most of the information is outdated and will scare the Bejesus out of you both!

I am 70 years old and was diagnosed in 2013 with UPSC stage II grade 3. It's been two years since I completed treatment and, to date, I am cancer free. Lately there have been quite a few new treatment options and every reason to believe your mom will be saved. UPSC is a serious and aggressive form of uterine cancer and your mom will need to prepare herself for a difficult course of treatment over the next few months. 

There are some thing you can do to help your mom- write down all your questions and your moms questions before her next appointment. Go with her and take notes, as this is such a stressful time and neither of you will be able to remember everything the doctor tells you. This is one of the most difficult times in your mom's course of treatment, the waiting and not knowing. Please take advantage of the information and compassion you can find here! Love and hugs, Sandy

donnaparamore
Posts: 12
Joined: May 2016

We have been told that she cannot have surgery...that radiation will not work and at this point only one of her kidneys is functioning so chemo would not add to the quality or quantity of her life..do you know where I can find info on prognosis.  We have a follow up next week where the doctor wants to talk about hospice.  

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Donna, please consider getting a second (expert) opinion at a large cancer center. There are so many new types of treatments being discovered every day. Only looking at surgery, chemo and radiation as treatment options is like only looking at the appetizer menu at a restaurant. I'm sure your mom's doctor would agree that it could not hurt to get at least one more opinion before moving to hospice. Please know that we are here to support you and your mom in whatever you choose. Wishing you strength and peace, Kim

 

donnaparamore
Posts: 12
Joined: May 2016

This was a second opinion at a totallly different hospital. At a large cancer center...trying to stay positive but it is hard..my Mom had two appointments today...one with her cardiologisit and the other with her PCP that was already scheduled.  We were basically told not to waste alot of time going to alot of drs appointments outside of her oncologist. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Oh Donna, I can only imagine how you and your Mom are feeling right now. Did any of the doctors mention trials of targeted and/or immuno therapies? There are so many trials going on right now that it seems that she should be eligible for at least one. Please know that I only ask to be sure that you have all the possibilities available for your Mom. No judgement. Just information. I pray that whatever decisions she makes gives you all peace.

 

donnaparamore
Posts: 12
Joined: May 2016

We have an appointment on next Wednesday with the Oncologist...I have compiling a list of questions now...and will include the trials of targeted and/or immuno thearpies questions...Thank you for the information.

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

Please let us know what the oncologist says and if there are any trials she can get into.  We care!!

Love,

Eldri

donnaparamore
Posts: 12
Joined: May 2016

Thank you so much...this is truly a scary time for us....

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I am UPSC also.  There are a lot of us here!  Just search the threads here then ask us anything.  NOTHING is off topic or TMI here!!  Let us know what you need to know for her.  Best, Debra(Jo)

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

No matter the prognosis, no one knows the outcome.  You can read on this board where many women in your mom's condition and worse have beat all odds.  Stay strong and continue the support.  If you and your mom feel it is appropriate, seek another opinion.  Stay strong. You are being a great daughter.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I would also suggest getting a second opinion from outside your current health/medical group.  Even in what seem to be the most advanced cases, sometimes another doctor can see a more hopeful option.  Check nearby large cancer centers to start with.  And again, there are several on this board who were also diagnosed with Stage 4 and they are still here!  

donnaparamore
Posts: 12
Joined: May 2016

This was a second opinion at a totallly different hospital. At a large cancer center...trying to stay positive but it is hard..my Mom had two appointments today...one with her cardiologisit and the other with her PCP that was already scheduled.  We were basically told not to waste alot of time going to alot of drs appointments outside of her oncologist.  

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

She was just diagnosed this last Wednesday and she's already had a second opinion?  Were they from the same cancer center but different hospitals/doctors?  If so, you might want to collect all her records and send them to a different cancer center for them to review.  

Love,

Eldri

donnaparamore
Posts: 12
Joined: May 2016

she was diagnosed with uterine cancer April 12th...we got a second opinion and got the stage IVB diagnosis on May 18th after a CT scan.  

donnaparamore
Posts: 12
Joined: May 2016

After the first diagnois I got all of the records and went to a differnt center with different doctors...not in the same system.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

http://csn.cancer.org/node/299313

Please read this posting from takingcontrol58. Her story is amazing and may provide you much needed information.

Love and Hugs,

Cindi

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

So much negativity with these doctors!  Did they mention diet, supplements(Curcurum, biopene, the Metformin as mentioned by Teddy&bears)?  It may not stop the UPSC, but then again it could and give her a better quality of life.  Hospice seems a little early to me!  Best, DebraJo

pinky104
Posts: 574
Joined: Feb 2013

I saw your e-mail a few days ago, but this is the first chance I've had to reply.  I was diagnosed with stage IVb UPSC six years ago.  I had surgery and chemo with carboplatin and taxol, and I've been considered NED ever since then (although I had a brief scare with a mass that turned out not to be cancerous almost two years ago). My cancer was in my uterus, both ovaries, the omentum, and the small intestine.  It was considered stage IVb only because it had "gone out of the pelvis."  I suppose there are all kinds of stage IVb patients with a much worse spread of their cancers than I had.  None was found in my lymph nodes, so I was lucky there.  How far had your mother's cancer spread that the doctors are so negative about her going for further treatment?  My doctor, who is at St. Peter's Hospital in Albany, NY (their Women's Cancer Care Center) told me that he's had plenty of stage IV cancer patients who are in remission.  Both he and his partner are excellent gyn/onc's.  His partner is considered the real expert, but he took great care of me when his partner was booked up, so I'm glad I went with him.  I know he sees people from across the state, and he's probably booked up until August right now.  I hate to just see doctors give up on patients when there are so many of us being treated successfully. 

donnaparamore
Posts: 12
Joined: May 2016

Thank you for this informaiton.  The cancer has spread to the lymp nodes...there is a spot on her lungs...it is also on the pelvic sidewall...although I have had 2 friends who are MDs to go over the report with me...I still dont know if I have everything accurate.  Over the weekend I sent her gyn onc some questions that I had as we will be seeing her on tomorrow.  We are not too far from Texas...I am considering going to MD Anderson.  

My mother is still bleeding...I asked her about this and was told she could get radiation to help with the bleeding

I asked about clinical trials...was told that there were not any in this area but I could check other places around the county.

Asked about prognosis...she said is was poor...not sure what that means exactly.  

pinky104
Posts: 574
Joined: Feb 2013

I had worked in a hospital medical records job.  My gyn/onc thought I would be someone who would be great at doing a clinical trial.  However, when he looked for one 6 years ago, he also found that there weren't any for stage IV.  I'm glad I did as well as I did without one.  My brother's first wife's sister was diagnosed a couple of months ago with ovarian cancer, but it was in her lung, not her ovary, which seemed a little crazy to me.  She had no history of having any cancer in the ovaries previously.  I understand she's been doing well on radiation.  Her oncologist said she wasn't a candidate for chemo.  She was also considered stage IV, so she's another person who's lucky to be doing so well.

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