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UPSC recurrence help

Littleone22
Posts: 10
Joined: Sep 2017

Hello all. I am hoping someone here may have some advice. My mother in law (70ish) was diagosed with UPSC almost 1.5 years ago (stage III something I believe). She had a complete hysterectomy, 6 rounds of chemo every 3 weeks (2 types carboplatin and something else that made her hair fall out), and internal (vaginal cuff?) radiation. She was then in remission for only 1 year and 4 months but we just found out the UPSC is back and there are 2 new tumors, 1 in abdomen and 1 in pelvis (which I think makes this stage IV?). The oncologist has recommended chemo only this time (carboplatin only), 1 round every 3 weeks. No radiation, no surgery (she says she doesn't know why). We are concerned that this treatment plan is not aggressive enough. Last time, the plan was more aggressive and the remission seems very short. We have been told UPSC is very aggressive cancer so we are aware that it is entirely possible this may be the best we can do to buy some time but I am really hoping that is not the case. She also said that there was no discussion of prognosis which I don't believe. From what I read about this cancer, the outlook seems frightening. 

Are there other treatments we should ask about? 

Are some UPSC cancers BRCA positive and if so what about hormone therapy?

I have heard that some types of uterine/endometrial cancers respond to PARP inhibitors. Has anyone with UPSC here heard of this or received this treatment?

Finally, this is a long shot but she lives in the Palm Beach Florida area. We may be interested in getting a second opinion. Does anyone know any UPSC specialists we may want to seek out in the area?

Thanks for reading and thanks in advance for any advice.

 

 

pinky104
Posts: 574
Joined: Feb 2013

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
Posts: 10
Joined: Sep 2017

Your reply is so informative and led me on some searches here that provided some more helpful information. Thank you so much for taking the time to write such a lengthy response. This is all so new to us and overwhelming as you can imagine. I did find out her biopsies were sent out to somewhere called Foundation One and we are now asking questions about some of the treatments you mentioned above. 

Thank you again.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2885
Joined: Mar 2013

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.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1749
Joined: Jun 2015

Littleone22 - I don't know how far you are willing to drive for a second opinion but I go to Moffitt Cancer Hospital in Tampa. I highly recommend them. They are a research center and provide great care. It is a very large facility but they treat you like you are the only one needing help when you are there. I hope you find answers to your questions.

Love and Hugs,

Cindi

Littleone22
Posts: 10
Joined: Sep 2017

Thank you for this info. Tampa is quite far but Moffit looks like a great center. I will mention it to them and look into insurance coverage. thank you.

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

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

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

 

I am also afflicted with UPSC.  I am heading into chemo#6 and have tolerated it reasonably well.  Last CT scan was clear.  I cannot celebrate because of things I read, knowing the high probability of recurrence and mortality.  Now I am dealing with confusion about treatment going forward.  My oncologist hedged about going forward with radiation because of differing opinions related to benefits/risks for Stage IV patients.  I really could use some clarity about treatment of this disease and my best chance of survival going forward.  Any help I can get from this site would be welcome.  Thank you, Rose

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2885
Joined: Mar 2013

Rose, to have or not to have radiation - that ha been quite a discussion here and gyn oncs seem not to have come to one conclusion.  I can only tell you what I was told by the radiologist, "when it recurs it tends to show at the vaginal cuff".  Well...I will say all the ladies here who have had recurrence I don't recall having it there - so did it prevent it or is it really not recurring there????  

For me, I had it.  I also think that since there is such a debate tells me there isn't enough done on uterine cancer research.  There are some good threads here, I suspect if you did a search on "radiation" I believe it will bring you to a good thread on it.  Please let us know how it is going.

Sharring
Posts: 24
Joined: Sep 2017

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....

Littleone22
Posts: 10
Joined: Sep 2017

My mother in law just experienced a bowel obstruction due to a UPSC tumor (recurrence) that has grown and is pressing on the colon from the outside. They placed a stent in bowel to help but  the tumor may not be operable. Also fear that this means the current treatment (Avastin chemo) is not working. I know I should not google but I did. All I am reading about this kind of bowel obstrution due to tumor seems to indicate this may mean end of life could be very near and that the stent treatment is a temporary "pallative" solution. The weird thing is she did not mention this nor does it seem the oncologist discussed with her.

Has anyone experienced anything similar or do you have any input? We live across the country and I want to talk to my husband asap about going to see his mom asap if this is the case but at the same time I do not want to scare him if this is not the case.

 

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

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