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

I just returned from Mayo for labs and the initial CT scan after chemo and radiation. Luckily, I have no evidence of disease. It has been four months since surgery and I am progressing well, but still have some side effects that hopefully will resolve in time. These are neuropathy (even with the cold gloves and slippers) some incontinence and some bowel oddities. After the 4th chemo, I am very fatigued, out of breath and have no stamina but with time these things should resolve. My surgery was uneventful and I am recovering nicely. I am so grateful that I came to Mayo for a second opinion, surgery, and have been treated by a terrific team who know how to treat UPSC. Now I am in survivorship mode and on to the next stage of my life.

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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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Hi @goldengirl2 and others, Chiming in with my experience. I'm five years and a few months out from dx of UPSC. Had surgery w/ Da Vinci robot and a superb, skilled, kind surgeon here in Virginia, followed by a 'sandwich regime': three rounds chemo Taxol/ Carboplatin, 25 sessions of external radiation and 3 sessions of brachytherapy internal rad, 3 final sessions of chemo. At one point in 2013 it was suggested by a consulting oncologist that external radiation might not be necessary in addition to all the rest, but my surgeon recommended I hit it with everything and so I did. I'm completely NED and we celebrated the five-year mark this spring (my family). Some of the side effects I think are by this time considered permanent: neuropathy (chemo-induced in feet) and digestive changes (rad-induced). It was a pretty scary experience certainly, my tumor was 90% through uterine wall but no lymph node involvement. The standard of care changes a bit over time and I try to keep up somewhat with the literature (am too new here to post links, it's not allowed for me, but there are some good recent ones found easily on google by inputting UPSC and looking in the last year) but by no means qualified to weigh in medically. Just a survivor's experience. Best of luck to you. If I can answer any questions please just ask.

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@bjkingape

Hi @goldengirl2 and others, Chiming in with my experience. I'm five years and a few months out from dx of UPSC. Had surgery w/ Da Vinci robot and a superb, skilled, kind surgeon here in Virginia, followed by a 'sandwich regime': three rounds chemo Taxol/ Carboplatin, 25 sessions of external radiation and 3 sessions of brachytherapy internal rad, 3 final sessions of chemo. At one point in 2013 it was suggested by a consulting oncologist that external radiation might not be necessary in addition to all the rest, but my surgeon recommended I hit it with everything and so I did. I'm completely NED and we celebrated the five-year mark this spring (my family). Some of the side effects I think are by this time considered permanent: neuropathy (chemo-induced in feet) and digestive changes (rad-induced). It was a pretty scary experience certainly, my tumor was 90% through uterine wall but no lymph node involvement. The standard of care changes a bit over time and I try to keep up somewhat with the literature (am too new here to post links, it's not allowed for me, but there are some good recent ones found easily on google by inputting UPSC and looking in the last year) but by no means qualified to weigh in medically. Just a survivor's experience. Best of luck to you. If I can answer any questions please just ask.

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

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@bjkingape

Hi @goldengirl2 and others, Chiming in with my experience. I'm five years and a few months out from dx of UPSC. Had surgery w/ Da Vinci robot and a superb, skilled, kind surgeon here in Virginia, followed by a 'sandwich regime': three rounds chemo Taxol/ Carboplatin, 25 sessions of external radiation and 3 sessions of brachytherapy internal rad, 3 final sessions of chemo. At one point in 2013 it was suggested by a consulting oncologist that external radiation might not be necessary in addition to all the rest, but my surgeon recommended I hit it with everything and so I did. I'm completely NED and we celebrated the five-year mark this spring (my family). Some of the side effects I think are by this time considered permanent: neuropathy (chemo-induced in feet) and digestive changes (rad-induced). It was a pretty scary experience certainly, my tumor was 90% through uterine wall but no lymph node involvement. The standard of care changes a bit over time and I try to keep up somewhat with the literature (am too new here to post links, it's not allowed for me, but there are some good recent ones found easily on google by inputting UPSC and looking in the last year) but by no means qualified to weigh in medically. Just a survivor's experience. Best of luck to you. If I can answer any questions please just ask.

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Welcome, @bjkingape. You will be able to post links soon. We block links for new registrants to help block spammers. However, I reviewed the link you wanted to post. Here it is:

- SGO 2018: No Benefit of Adding Vaginal Brachytherapy to Adjuvant Chemotherapy for Early-Stage Uterine Cancer https://www.practiceupdate.com/content/sgo-2018-no-benefit-of-adding-vaginal-brachytherapy-to-adjuvant-chemotherapy-for-early-stage-uterine-cancer/65991
Please note that this article is behind a registration obligation. You have to register (for free) to access the information.

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@colleenyoung

Welcome, @bjkingape. You will be able to post links soon. We block links for new registrants to help block spammers. However, I reviewed the link you wanted to post. Here it is:

- SGO 2018: No Benefit of Adding Vaginal Brachytherapy to Adjuvant Chemotherapy for Early-Stage Uterine Cancer https://www.practiceupdate.com/content/sgo-2018-no-benefit-of-adding-vaginal-brachytherapy-to-adjuvant-chemotherapy-for-early-stage-uterine-cancer/65991
Please note that this article is behind a registration obligation. You have to register (for free) to access the information.

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Thank you for adding the link!

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@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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