UPSC recurrence help

I had stage IVb UPSC in 2010, had a recurrence this year, and had surgery and chemo for it.  Part of the recurrence apparently started in 2014, but it was so small then that my GYN/onc said he wasn't even sure it was cancer, and he didn't think he could even find it to remove it.  He did repeat scans over the course of a year, but it didn't grow, so he thought it wasn't cancer, but it apparently was.  I wonder how big your mother-in-law's tumors are.  I am not someone who can answer most of your questions.  I haven't yet learned the results of my genomic testing, and I have a lot to learn. If you look back through this site, you should  find some other threads from more informed women that will probably help you.  I was tested a couple of years ago for Lynch syndrome, which can cause uterine cancer, but I was negative.  My insurance I had back then refused to pay for testing for the BRCA genetic defect because I needed three first degree relatives with breast cancer to qualify for the testing.  My grandmother and my mother had breast cancer, but only my mother was considered a first degree relative.  My father had prostate cancer and a half sister of mine had lymphoma.  My cousin has since had breast cancer, but she tested negative for the BRCA defect. So, yes, the BRCA defect can sometimes cause uterine cancer, so that's one answer for you.  I believe my GYN/onc mentioned success with PARP inhibitors for some people when he recommended my getting the genomic testing done.  I hope to find out more about them when I go for my next appointment on Oct. 16 with him.  I think I'll be getting my genomic testing results reviewed then if I'm lucky.  There is a place called Foundation One that might be able to get your mother-in-law financial assistance with the genomic testing if her insurance won't pay for it.  I was told the testing costs $5,800.   

It's my understanding that the first stage the doctors find you in is the one you stay in, no matter where the cancer spreads after that.  Your mother-in-law would still be stage III something for that reason.  If she were just getting staged for the first time now, she would be stage IV because the cancer spread out of the pelvis.  That's what mine did originally, so I was considered stage IVb at the start.

I can believe that prognosis wasn't discussed.  My oncologist told me that he didn't want to discuss my odds for survival.  He said that if a cancer has a 90% survival rate, but you're in the other 10%, that 90% survival rate won't do you a bit of good.  I found from a staffer in the cancer center, who researched my survival rate odds and found something on the website Oncolink, that I had about a 15% chance of survival.  Since then, someone on this site posted a link to a report of a society of clinical gynecologists which showed my odds were much less than that.  Yet here I am 7 years later, just finishing my chemo again.  The prognosis for UPSC varies widely.  There have been people with lower stages who have died, yet some of us with stage IV  have managed to survive.  Some treat it like a chronic illness, fighting the battles as they come.

I know there are a number of Floridians on this site, so you may be able to get some help in getting names for second opinion doctors for your area.

If you read through some of the other threads, you'll find multiple other treatments for this cancer, including taking the drugs Keytruda and Metformin, but they don't work for everyone.  Some people have travelled to Europe for treatments that aren't done in this country.  There's a wealth of information on this site.  I know it will take a lot of reading, but the posts in the last year reveal a wealth of information.  Many people take supplements and see naturopaths.  It's really amazing to see how many different ways women have dealt with this disease.   I wish your mother-in-law smooth sailing in her battle. 

Littleone22, my gyn-onc is wonderful. His name is Dr. Hector Arango and he's located in Clearwater, FL. When he left Moffitt, he started his own practice which just recently became part of the BayCare system.

Another way that I've found to locate experts on certain sub-specialties is to look at the authors of research articles on those subjects (like UPSC) on PubMed. You can click on the author name and it will show you a list of the other articles they've written. Once you find a few that seem to be writing about your subject a lot, you can look them up on the internet to find out where their contact information. Some are willing to consult remotely so don't let their proximity to her stop you from reaching out to them for second or third opinions. 

I hope this information helps. Thank you for being there for her through this hard time. Sending positive thoughts her (and your) way, Kim

pinky104 said:

Littleone22

I had stage IVb UPSC in 2010, had a recurrence this year, and had surgery and chemo for it.  Part of the recurrence apparently started in 2014, but it was so small then that my GYN/onc said he wasn't even sure it was cancer, and he didn't think he could even find it to remove it.  He did repeat scans over the course of a year, but it didn't grow, so he thought it wasn't cancer, but it apparently was.  I wonder how big your mother-in-law's tumors are.  I am not someone who can answer most of your questions.  I haven't yet learned the results of my genomic testing, and I have a lot to learn. If you look back through this site, you should  find some other threads from more informed women that will probably help you.  I was tested a couple of years ago for Lynch syndrome, which can cause uterine cancer, but I was negative.  My insurance I had back then refused to pay for testing for the BRCA genetic defect because I needed three first degree relatives with breast cancer to qualify for the testing.  My grandmother and my mother had breast cancer, but only my mother was considered a first degree relative.  My father had prostate cancer and a half sister of mine had lymphoma.  My cousin has since had breast cancer, but she tested negative for the BRCA defect. So, yes, the BRCA defect can sometimes cause uterine cancer, so that's one answer for you.  I believe my GYN/onc mentioned success with PARP inhibitors for some people when he recommended my getting the genomic testing done.  I hope to find out more about them when I go for my next appointment on Oct. 16 with him.  I think I'll be getting my genomic testing results reviewed then if I'm lucky.  There is a place called Foundation One that might be able to get your mother-in-law financial assistance with the genomic testing if her insurance won't pay for it.  I was told the testing costs $5,800.   

It's my understanding that the first stage the doctors find you in is the one you stay in, no matter where the cancer spreads after that.  Your mother-in-law would still be stage III something for that reason.  If she were just getting staged for the first time now, she would be stage IV because the cancer spread out of the pelvis.  That's what mine did originally, so I was considered stage IVb at the start.

I can believe that prognosis wasn't discussed.  My oncologist told me that he didn't want to discuss my odds for survival.  He said that if a cancer has a 90% survival rate, but you're in the other 10%, that 90% survival rate won't do you a bit of good.  I found from a staffer in the cancer center, who researched my survival rate odds and found something on the website Oncolink, that I had about a 15% chance of survival.  Since then, someone on this site posted a link to a report of a society of clinical gynecologists which showed my odds were much less than that.  Yet here I am 7 years later, just finishing my chemo again.  The prognosis for UPSC varies widely.  There have been people with lower stages who have died, yet some of us with stage IV  have managed to survive.  Some treat it like a chronic illness, fighting the battles as they come.

I know there are a number of Floridians on this site, so you may be able to get some help in getting names for second opinion doctors for your area.

If you read through some of the other threads, you'll find multiple other treatments for this cancer, including taking the drugs Keytruda and Metformin, but they don't work for everyone.  Some people have travelled to Europe for treatments that aren't done in this country.  There's a wealth of information on this site.  I know it will take a lot of reading, but the posts in the last year reveal a wealth of information.  Many people take supplements and see naturopaths.  It's really amazing to see how many different ways women have dealt with this disease.   I wish your mother-in-law smooth sailing in her battle. 

wow, pinky - that was an awesome response! 

I would add that I was told UPSC would thrive with hormones and that treatment is not recommended.

I only just started my journey...Stage lllc uterine mmmt. First chemo of 6 today. I am quickly realizing that this site is a god send for information and knowledge. We need to be able to ask questions...so we need to be informed and not with the old crap google spits out at us. I felt more prepared today because of real life recent posters like pinky and Kim. I found my oncologists responses quick and confident .  I will have to make the radiation decision soon myself and am going to soak up all the info from y,all that I can.  Keep communicating little one. I know it's hard when you are the caregiver but I promise you your mother in law will be very grateful for all your love and support! Wishing you all the best....

Two years ago I had a bowel obstruction caused by a recurrent tumo.  It was intwined between my intestines.  They removed it surgericly, put me back to get her , and I am fine.  I have to take a stool softener every night.  I have had no real problems with that.

Hugs and prayers, Lou Ann