Uterine Papillary serous carcinoma

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.

@goldengirl2

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

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Hi again. First I just want to say that UPSC, as you obviously know, is serious enough that I am every single day grateful to be dealing with side effects instead of dealing with it! Also I know it's highly individualized and I already had IBS before any of my treatment began, so I'm clearly digestive-sensitive to start with. What happened to me after treatment may be because of that. After all the external rad I'm just far more prone to diarrhea and cramps and have to manage my diet differently. It was getting severe for a while and I had to make changes —-I eat closer to a vegetarian/ vegan diet now, which is okay with me since I do animal advocacy anyway— for instance I do better with non dairy ice cream and milk and cheese than with dairy products. So it has been a trial and error process. My gastroenterologist was a big help in recommending a modified FODMAP diet. (Again, easy to look up, until I can post links.)

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@goldengirl2

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

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I wrote a really long reply but I don't see it here… it seemed to be here last night..?

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@bjkingape

I wrote a really long reply but I don't see it here… it seemed to be here last night..?

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Hi @bjkingape, None of your posts were deleted. Do you see the post you're looking for on page 1? https://connect.mayoclinic.org/discussion/uterine-papillary-serous-carcinoma/?pg=1

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@goldengirl2

Glad things are going well for you bluemeade7! It’s scary at first isn’t it? I found it desoncerting to be told we dont really know if this chemo works for you or not ….What chemo drugs did you have for 4 rounds? And did radiation involve whole abdomen? Will the incontinence and odd bowel stuff resolve and did you have radiation after surgery, and chemo? My 6th round definitely left me with neuropathy in my feet but nowhere else and only this round so I hope it goes away as its like walking with a plank of wood at the bottom of my legs…quite weird and no sensation to hot or cold. Amazing what they can do with surgery now leaving little marks instead of major scars..and super short recovery time..physically that is, mentally it does take a bit to come to terms with it all.

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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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@goldengirl2

Yes I live in British Columbia. They are suggesting WART and along the paa aortic lymph nodes, not brachytherapy. I just finished my last chemo and this may be the next step in January. Adjuvant , like the chemo. I will read the article thank you so much. Knowledge is powere I am finding out the hard way through this whole process of advocating for yourself…

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

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@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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@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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@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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@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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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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@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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