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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@speck634

Hi there,
How are you doing now? I just found this message for tonight. I was diagnosed a little over a year ago with stage one a grade 3. I had a hysterectomy and chemo. No brachytherapy.

Are you in the Facebook group for UPSC group? It’s very helpful.

Jump to this post

Hi @speck634,
I am doing well, thank you. I am 6 years NED, as of this past Nov. and I feel really good. I do not have any major long term side effects from treatment, other than some neuropathy in my feet - and by neuropathy, I mean some tingling and numbness, no pain. Staying on a regimen of B vitamins seems to help me some with that. I am still working - teaching - and lead an active life. Life is good. I am sorry about your diagnosis. How are you doing? Strange, I have not been on the Mayo site for quite some time, but your post stood out and I happened to see it. I'm glad I did. I do not do Facebook.

REPLY
@speck634

Hi there,
How are you doing now? I just found this message for tonight. I was diagnosed a little over a year ago with stage one a grade 3. I had a hysterectomy and chemo. No brachytherapy.

Are you in the Facebook group for UPSC group? It’s very helpful.

Jump to this post

@speck634 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. We are very supportive group here. We support one another by sharing our own medical histories and worries and provide one another with compassion.

How are you feeling today? Would you like to share more about your own journey so that we can support you?

REPLY
@polkagal

Hi @gormie. I was diagnosed with high-grade papillary serous uterine carcinoma Stage1a, Grade 3, Type 2 in the summer of 2018 at age 58. Well really 59, because I had surgery a day after my 59th birthday - total robotic abdominal hysterectomy with bilateral saplingo-oophorectomy, removal of omentum, & 19 lymph nodes. My lymph nodes all looked good, but I did have some "trace" amounts in my pelvic washings. One month after surgery, I had a port put in, then the day after that I began chemotherapy - Carboplatin & Taxol every 3 weeks for 6 treatments. One week after my 1st chemo treatment, I began Brachytherapy - I had 5 of these, every other day for 2 weeks, directed at my vaginal cuff. These were completed before I had my 2nd round of chemo. I really had no side effects from the Brachytherapy, other than minimal spotting after the 1st treatment. I did not have issues with nausea or diarrhea however, at the time I was also on a lot of anti-nausea meds for the chemo. Maybe that had something to do with it? I have been NED 3 years now and have not noticed any long-term side effects. It is hard not to worry "why me" when you are hearing that this is unusual or typically does not happen. But just because it IS happening to you does not necessarily mean you should worry more. We are all different! What is important is to listen to your doctors, try to figure out what you can do about it, and advocate for yourself - and it sounds like you are doing all of these. I am sorry this is happening to you. This whole cancer thing is a different level of scary and some moments it feels like you are all alone, no matter how many may be around you. But you are not alone, everyone here gets it and is willing to listen and offer support and suggestions. So lean on us, we are here 🙂

Jump to this post

Hi there,
How are you doing now? I just found this message for tonight. I was diagnosed a little over a year ago with stage one a grade 3. I had a hysterectomy and chemo. No brachytherapy.

Are you in the Facebook group for UPSC group? It’s very helpful.

REPLY

Hi @gormie. I was diagnosed with high-grade papillary serous uterine carcinoma Stage1a, Grade 3, Type 2 in the summer of 2018 at age 58. Well really 59, because I had surgery a day after my 59th birthday - total robotic abdominal hysterectomy with bilateral saplingo-oophorectomy, removal of omentum, & 19 lymph nodes. My lymph nodes all looked good, but I did have some "trace" amounts in my pelvic washings. One month after surgery, I had a port put in, then the day after that I began chemotherapy - Carboplatin & Taxol every 3 weeks for 6 treatments. One week after my 1st chemo treatment, I began Brachytherapy - I had 5 of these, every other day for 2 weeks, directed at my vaginal cuff. These were completed before I had my 2nd round of chemo. I really had no side effects from the Brachytherapy, other than minimal spotting after the 1st treatment. I did not have issues with nausea or diarrhea however, at the time I was also on a lot of anti-nausea meds for the chemo. Maybe that had something to do with it? I have been NED 3 years now and have not noticed any long-term side effects. It is hard not to worry "why me" when you are hearing that this is unusual or typically does not happen. But just because it IS happening to you does not necessarily mean you should worry more. We are all different! What is important is to listen to your doctors, try to figure out what you can do about it, and advocate for yourself - and it sounds like you are doing all of these. I am sorry this is happening to you. This whole cancer thing is a different level of scary and some moments it feels like you are all alone, no matter how many may be around you. But you are not alone, everyone here gets it and is willing to listen and offer support and suggestions. So lean on us, we are here 🙂

REPLY

@gormie I was diagnosed with endometroid adenocarcinoma Grade 1, Stage 1a in 2019. My cancer care team is at Mayo Clinic in Rochester and in 2021 a recurrence was found in a physical exam. I had 25 external beam radiation treatments followed by 2 high intensity brachytherapy treatments. I did have a few bouts of diarrhea during the treatment but not afterward. The radiation oncology team told me that I could have lasting symptoms including diarrhea for many months after the treatment ended as that sometimes happens.

Did you have external beam radiation to the pelvic area or were all 5 of your treatments brachytherapy? My cancer care team told me I might have some mild discomfort and bleeding for a day or two. I had neither of those but I did have a puzzling itchy skin rash on my forearms and legs that lasted for about a month. The radiation oncology nurse said that the rash was unrelated but since I'd never had anything like that before (although I do have allergies) I wonder about that. I'm going to bring it up again at my next visit in April.

I can imagine how distressing it would be this many months out from your treatment to still have diarrhea so it's good you've been in touch with your care team and will have a CT scan today (or tomorrow?). I'm sending you positive thoughts that the CT scan is negative and your team helps you to figure out the next step. They sound very responsive and thorough.

REPLY
@colleenyoung

Hi @gormie, loose stools and urgent need is a common side effect after radiation for a gynecologic cancer. But I can see you're concerned about still dealing with this 10 months after radiation. I'm tagging @bluemeade7 @naturegirl5 @embeth99 @goldengirl2 @polkagal @ejrdevries @ejohn @rose53 to bring them into this discussion and get their experiences and tips.

Gormie, you may also be interested in this related discussion:
- How did you feel after pelvic radiation was completed? https://connect.mayoclinic.org/discussion/how-did-you-feel-after-pelvic-radiation-was-completed/

Jump to this post

I think what you're saying is it's not uncommon even 10 months out to still deal with loose stools and strong urge. I'm lucky as I had grade 2 stage 1A cancer with no involvement anywhere else. It was caught very early I think. Only 13% involvement burrowing into the uterus. I'm being treated at Seattle Cancer Care Alliance and think the radiologist and whole department are wonderful. But it's still worrisome when they are surprised I'm still having the stool issues. Off for a CT scan tomorrow just to take a look.
Cheers,
Bev

REPLY
@colleenyoung

Hi @gormie, loose stools and urgent need is a common side effect after radiation for a gynecologic cancer. But I can see you're concerned about still dealing with this 10 months after radiation. I'm tagging @bluemeade7 @naturegirl5 @embeth99 @goldengirl2 @polkagal @ejrdevries @ejohn @rose53 to bring them into this discussion and get their experiences and tips.

Gormie, you may also be interested in this related discussion:
- How did you feel after pelvic radiation was completed? https://connect.mayoclinic.org/discussion/how-did-you-feel-after-pelvic-radiation-was-completed/

Jump to this post

Many thanks, I'll be very interested to connect with them.
Bev

REPLY
@gormie

I had 5 radiation treatments in May 2021 after a total hysterectomy. About a month later I began to have bouts of diarrhea. It has gotten better but it's been 10 months since the last brachytherapy and I still have loose stools almost every day along with the urgent need to go to the bathroom. It has gotten better but my doctor says it is very uncommon to have this long term side effect. Does anyone else still have this problem? Thanks

Jump to this post

Hi @gormie, loose stools and urgent need is a common side effect after radiation for a gynecologic cancer. But I can see you're concerned about still dealing with this 10 months after radiation. I'm tagging @bluemeade7 @naturegirl5 @embeth99 @goldengirl2 @polkagal @ejrdevries @ejohn @rose53 to bring them into this discussion and get their experiences and tips.

Gormie, you may also be interested in this related discussion:
- How did you feel after pelvic radiation was completed? https://connect.mayoclinic.org/discussion/how-did-you-feel-after-pelvic-radiation-was-completed/

REPLY
@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.

Jump to this post

I had 5 radiation treatments in May 2021 after a total hysterectomy. About a month later I began to have bouts of diarrhea. It has gotten better but it's been 10 months since the last brachytherapy and I still have loose stools almost every day along with the urgent need to go to the bathroom. It has gotten better but my doctor says it is very uncommon to have this long term side effect. Does anyone else still have this problem? Thanks

REPLY

Anyone can share with me about Adenocarcinoma uterine that I have been diagnosed after biopsy.. I feel I'm about to have a panig attack.

REPLY
Please sign in or register to post a reply.