1. < Gynecologic Cancers

Uterine Papillary Serous Carcinoma: What treatments did you have?

Posted by goldengirl2 @goldengirl2, Oct 25, 2018

Is there anyone out there who has gone through the treatments for this? I have had surgery , and chemo taxes/carboplatin. Radiation is suggested but no one seems to have any data to refer to as we are such a small group I’m guessing. Very nervous moving forward as to what to do.

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bluemeade7 | @bluemeade7 | Dec 1, 2018

Yes. I turned to Mayo after my gyne wasn't taking my cancer seriously until the DX of USPC. It was the best decision I made about my treatment. I travel 6 hours by car to get to Rochester, but everyone at Mayo from the schedulers to the surgeons made sure I received the most prompt and best care. Everyone is extremely kind and caring while delivering world class care.

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bluemeade7 | @bluemeade7 | Dec 1, 2018
In reply to @goldengirl2 "What are the rad induced digestive changes? It’s these things I’m worried about..." + (show)
@goldengirl2

What are the rad induced digestive changes? It’s these things I’m worried about...

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I had three courses of vaginal brachytherapy in late September 2018 and it was sandwiched in between chemo. My normal chemo side effects were incontinence, followed by a few days of constipation followed by a few days of diarrhea. After the brachy sandwich I had this same sequence followed by horribly painful diarrhea, 6 times in one day, then the next day it went away. I have occasional diarrhea now one month post lady chemo. My main complaint is that my body's traditional signals for elimination no longer work well. When it tells me that I need to go, I have zero time to run to the toilet. Bowels & bladder have settled down so that I am on my way back to normal but it is dicey everyday. I still have no appetite so I am no where near consuming the volume of food and liquid I used to so there is that in the equation. My team told me to wait one year after the last treatment to assess changes and that this might be the new normal for me. I can easily deal with these challenges, but if the diarrhea came back I would be housebound. Diarrhea is one of the more serious side effects from radiation for uterine cancer, USPC.

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3 replies
goldengirl2 | @goldengirl2 | Dec 2, 2018
In reply to @bluemeade7 "I had three courses of vaginal brachytherapy in late September 2018 and it was sandwiched in..." + (show)
@bluemeade7

I had three courses of vaginal brachytherapy in late September 2018 and it was sandwiched in between chemo. My normal chemo side effects were incontinence, followed by a few days of constipation followed by a few days of diarrhea. After the brachy sandwich I had this same sequence followed by horribly painful diarrhea, 6 times in one day, then the next day it went away. I have occasional diarrhea now one month post lady chemo. My main complaint is that my body's traditional signals for elimination no longer work well. When it tells me that I need to go, I have zero time to run to the toilet. Bowels & bladder have settled down so that I am on my way back to normal but it is dicey everyday. I still have no appetite so I am no where near consuming the volume of food and liquid I used to so there is that in the equation. My team told me to wait one year after the last treatment to assess changes and that this might be the new normal for me. I can easily deal with these challenges, but if the diarrhea came back I would be housebound. Diarrhea is one of the more serious side effects from radiation for uterine cancer, USPC.

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Most of what you are describing sounds more like radiation side effects or I was extremely lucky as had no bladder or bowel issues with Chemo whatsoever. It’s been a month out an no sign of hair returning yet. I meet the radiation oncologist tomorrow to discuss but have pretty much decided to forego radiation aa surgery removed it and the chemo was adjuvant and my lifestyle couldn’t deal with always having to know where the nearest bathroom is. And in my case it would have to be a bush somewhere as I’m usually out on my bike or hiking. I have also found that diffentent provinces or states in your case, have different protocols for treatment so if I lived 3 h ours away in Alberta, radiation is not the protocol but surgery and 6 adjuvant chemo therapy is the protocol there. Ive done due diligence and looked at OS and prognosis for recurrance etc and feel comfortable with just getting on with life. And if it recurs then I’ll deal with it then. No one has any guarantees regardless of treatment. Each and every one of us on this connect site has chosen a course of treatment that is right for them. I very much appreciate the candour with which people share their real life experiences.

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slm101 | @slm101 | Feb 6, 2019

Hi my name is Stephanie. I have upsc. Did everything keeps getting worse. It's been 3 years. Losing hope.

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1 reply
slm101 | @slm101 | Feb 6, 2019
In reply to @bluemeade7 "I had three courses of vaginal brachytherapy in late September 2018 and it was sandwiched in..." + (show)
@bluemeade7

I had three courses of vaginal brachytherapy in late September 2018 and it was sandwiched in between chemo. My normal chemo side effects were incontinence, followed by a few days of constipation followed by a few days of diarrhea. After the brachy sandwich I had this same sequence followed by horribly painful diarrhea, 6 times in one day, then the next day it went away. I have occasional diarrhea now one month post lady chemo. My main complaint is that my body's traditional signals for elimination no longer work well. When it tells me that I need to go, I have zero time to run to the toilet. Bowels & bladder have settled down so that I am on my way back to normal but it is dicey everyday. I still have no appetite so I am no where near consuming the volume of food and liquid I used to so there is that in the equation. My team told me to wait one year after the last treatment to assess changes and that this might be the new normal for me. I can easily deal with these challenges, but if the diarrhea came back I would be housebound. Diarrhea is one of the more serious side effects from radiation for uterine cancer, USPC.

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Are you in remission?

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1 reply
slm101 | @slm101 | Feb 6, 2019
In reply to @colleenyoung "@goldengirl2 I realize that I never provided the contact information for Mayo Clinic should you wish..." + (show)
@colleenyoung

@goldengirl2 I realize that I never provided the contact information for Mayo Clinic should you wish to consider getting a second opinion there. Given that you're Canadian, you should contact International Services https://www.mayoclinic.org/departments-centers/international. Here's specific information for Canadians https://www.mayoclinic.org/canada

I believe @bluemeade7 said she is a Mayo patient. She may be able to provide firsthand experience with the cancer center there.

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I am in Philadelphia at Fox Chase and want to try Mayo for this. What is their success rate.

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slm101 | @slm101 | Feb 6, 2019
In reply to @colleenyoung "@goldengirl2 I realize that I never provided the contact information for Mayo Clinic should you wish..." + (show)
@colleenyoung

@goldengirl2 I realize that I never provided the contact information for Mayo Clinic should you wish to consider getting a second opinion there. Given that you're Canadian, you should contact International Services https://www.mayoclinic.org/departments-centers/international. Here's specific information for Canadians https://www.mayoclinic.org/canada

I believe @bluemeade7 said she is a Mayo patient. She may be able to provide firsthand experience with the cancer center there.

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What is WART?

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slm101 | @slm101 | Feb 6, 2019
In reply to @bluemeade7 "I had carboplatin and Taxol. 3 sessions of brachytherapy. Congrats for being NED. Yes this is..." + (show)
@bluemeade7

I had carboplatin and Taxol. 3 sessions of brachytherapy. Congrats for being NED. Yes this is scary but also boring and frustrating. Now that I am one month post chemo, I am starting to feel a bit better, but still fogged out mentally. I have continuing foot neuropathy, less in my fingers. The incontinence is not resolving but the pain on urination is gone. Bowel seems to be trying to act normally but just isn't there yet. Intermittent diarrhea. My energy levels are pathetic but manageable as it is cold out so not much happening anyway. I am so lucky to have supportive family and friends and am newly appreciative of my time what ever that may be in the future. I am optimistic most of the time. 😊 nice to meet you and everyone. If anyone has questions about UPSC and my experience ask away.

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Hi are you in remission with this?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10, 2019

Welcome to Connect, Stephanie @slm101. I'm confident that @bluemeade7 @goldengirl2 and @bjkingape will join me in welcoming you to Connect and share their experiences about uterine papillary serous carcinoma.

Stephanie, to inquire about Mayo's expertise in treating UPSC, you can contact them and inquire here: http://mayocl.in/1mtmR63
@bluemeade7 may have first-hand stories to share about Mayo.

Stephanie, WART stands for whole-abdominal radiotherapy. What treatments have you had? How are you doing?

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bluemeade7 | @bluemeade7 | Feb 10, 2019
In reply to @slm101 "Are you in remission?" + (show)
@slm101

Are you in remission?

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I am going to Mayo This Tuesday actually, for my 1st 3 month checkup. I was NED as of November but that was just after my last treatment. Welcome to our group.

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