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goldengirl2
@goldengirl2

Posts: 8
Joined: Oct 25, 2018

Uterine Papillary serous carcinoma

Posted by @goldengirl2, Thu, Oct 25 1:39pm

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.

REPLY

Hi @goldengirl2, It must be a challenge to get information as well as support from others when dealing with a rare cancer such as uterine papillary serous carcinoma. I see that @judithvt posted on Connect a while ago about UPSC. I'm not sure if she is still monitoring the discussions, but hope she join us if she is.

@diane060 @mdotsie and others talk about endometrial cancer in these discussions:
– Uterine Cancer with brain metastasis https://connect.mayoclinic.org/discussion/metastatic-brain-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

GoldenGirl, what stage is your cancer? Will you be getting whole abdominopelvic radiation therapy?

@colleenyoung

Hi @goldengirl2, It must be a challenge to get information as well as support from others when dealing with a rare cancer such as uterine papillary serous carcinoma. I see that @judithvt posted on Connect a while ago about UPSC. I'm not sure if she is still monitoring the discussions, but hope she join us if she is.

@diane060 @mdotsie and others talk about endometrial cancer in these discussions:
– Uterine Cancer with brain metastasis https://connect.mayoclinic.org/discussion/metastatic-brain-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

GoldenGirl, what stage is your cancer? Will you be getting whole abdominopelvic radiation therapy?

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Would have been stage 1 except 2 paaortic nodes were pos but nothing had leaked out of them. So stage 3c. As the radiation would be adjuvant and I just finished my round 6 of chemo I am undecided as cant find any data on benefit of it. Some provinces use it but others don't. I guess if the benefits were good then the protocol would be used everywhere. I need a few more answers before I decide. To do that as well. Everything roemoved had no signs of it. Including the pelvic washings. Just those 2 nodes . I don't rad about many survivors so it is discouraging but I remain positive.

@goldengirl2

Would have been stage 1 except 2 paaortic nodes were pos but nothing had leaked out of them. So stage 3c. As the radiation would be adjuvant and I just finished my round 6 of chemo I am undecided as cant find any data on benefit of it. Some provinces use it but others don't. I guess if the benefits were good then the protocol would be used everywhere. I need a few more answers before I decide. To do that as well. Everything roemoved had no signs of it. Including the pelvic washings. Just those 2 nodes . I don't rad about many survivors so it is discouraging but I remain positive.

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@goldengirl2 you mention "Some provinces use it but others don't." Am I to understand that you live in Canada?

I read in the abstract of this 2014 study that "vaginal cuff brachytherapy is also of potential benefit in USC" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984476/
Is brachytherapy the type of radiation being suggested for you?

I just found this Q&A about uterine papillary serous carcinoma from a Mayo Clinic expert https://newsnetwork.mayoclinic.org/discussion/treatment-for-rare-form-of-endometrial-cancer-can-be-complex/ Might getting a second opinion at Mayo Clinic be an option you could consider?

@colleenyoung

@goldengirl2 you mention "Some provinces use it but others don't." Am I to understand that you live in Canada?

I read in the abstract of this 2014 study that "vaginal cuff brachytherapy is also of potential benefit in USC" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984476/
Is brachytherapy the type of radiation being suggested for you?

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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…

@colleenyoung

I just found this Q&A about uterine papillary serous carcinoma from a Mayo Clinic expert https://newsnetwork.mayoclinic.org/discussion/treatment-for-rare-form-of-endometrial-cancer-can-be-complex/ Might getting a second opinion at Mayo Clinic be an option you could consider?

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A very good option I would say!

I have just been treated and have Stage 1a UPSC with LVSI. I had a radical hysterectomy, the full Monty, via Da Vinci Robot. I was prescribed 4 rounds of chemo and three rounds of brachytherapy. I believe that the new guidelines from Nccn.org are that brachytherapy is the recommended treatment of 1A UPSC. That website has a wealth of information about EVERYTHING related to cancer.

Hi @bluemeade7 and welcome to Connect! Thank you for sharing how you were treated for uterine papillary serous carcinoma.

I'm sure @goldengirl2 would be interested to hear about how your treatment is going.

I also wanted to tag @diane060 @mdotsie along with other have spoken about endometrial cancer in these discussions:
– Uterine Cancer with brain metastasis https://connect.mayoclinic.org/discussion/metastatic-brain-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Back to your treatment, how have you been feeling during/since your treatment? How as the recovery from the radical hysterectomy?

@ethanmcconkey

Hi @bluemeade7 and welcome to Connect! Thank you for sharing how you were treated for uterine papillary serous carcinoma.

I'm sure @goldengirl2 would be interested to hear about how your treatment is going.

I also wanted to tag @diane060 @mdotsie along with other have spoken about endometrial cancer in these discussions:
– Uterine Cancer with brain metastasis https://connect.mayoclinic.org/discussion/metastatic-brain-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Back to your treatment, how have you been feeling during/since your treatment? How as the recovery from the radical hysterectomy?

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I had surgery end of May. Recovered nicely and was road bike riding in no time! I have stage 3c uterine papillary carcinoma. I just finished adjuvant chemotherapy taxel/ carboplatin and kept active through it all. Definitely had its moments though. I was a bit surprised to read on this site that you have to watch for symptoms as there is no test? I’m believing it won’t recur…I have to or I will drive myself into a stressed out mess thinking each sign I get means it’s back. There is talk of WART starting Jan1. But I’m not seeing any data that shows benefits outweigh risks. Is there anyone who can help with that? Is there anyone out there that didn’t have it recur? I’ve been told if it comes back it’s likely to the pelvic area. Mine was nowhere to be found except uterus and would have been stage 1 except it was found in 2 paraortic nodes but none of the other 14 and it had not leaked out of those nodes but the nodes make it 3c. How quickly does it come back if it recurs?

@ethanmcconkey

Hi @bluemeade7 and welcome to Connect! Thank you for sharing how you were treated for uterine papillary serous carcinoma.

I'm sure @goldengirl2 would be interested to hear about how your treatment is going.

I also wanted to tag @diane060 @mdotsie along with other have spoken about endometrial cancer in these discussions:
– Uterine Cancer with brain metastasis https://connect.mayoclinic.org/discussion/metastatic-brain-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Back to your treatment, how have you been feeling during/since your treatment? How as the recovery from the radical hysterectomy?

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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.

@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.

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.

Liked by Jamie Olson

@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…

@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.

@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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