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.

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

goldengirl2 | @goldengirl2 | Dec 1, 2019
In reply to @miraclegirl "I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It..." + (show)
@miraclegirl

I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It was only found during the surgery for a "common" uterine cancer. The serous endometrial cancer was found during the surgery in 3 lymph nodes. It had not shown up in the uterine biopsy pre-surgery. Had complete hysterectomy. Had carbo/platin chemo, no radiation. Following the chemo, my oncologist at the time urged me to stay on Aromasin by mouth as long as possible. I have continued on Aromasin now for 8 years. My current oncologist says she will not approve of continued use of Aromasin after 10 years as she doubts it would have any affect.

I would like to know if anyone reading this has been on Aromasin longer than 10 years, and what side effects have been noted. I am having some nerve related symptoms in my extremities, but don't know if they are related to the Aromasin, or something else, possibly Parkinson's.

I would also like to add this little footnote: My surgeon told me fairly recently that "they" had not expected me to survive this long. In fact, apparently they had not expected me to survive long at all after the chemo. He did not explain any further and I didn't ask.

But, dear ladies, I am still here at 82 years of age, 8 years post diagnosis. How much longer I will be around, I don't know. What I do know is that there is a God and He does miracles. So do your best at beating this, and pray.

Sent with love to each of you,
MiracleGirl

Jump to this post

What an inspiring story! So fortunate they found it and treated it. I have not heard of being on Aromisin as it's normally used for brest cancer but obviously it hasn't hurt you. My continued nerve damage is a direct result of the chemo I've been told so maybe it and not the drug is responsible?
You've given me such hope reading your posting this morning. Thank you so much and I suspect you'll be here a lot longer still 💕

REPLY
miraclegirl | @miraclegirl | Dec 1, 2019

You are quite right about Aromasin, but apparently there is no other medicine for this particular cancer, and very little research. I may have mentioned that I am hearing Johns Hopkins is doing some research. I will explore that as possible. Yes, the chemo caused nerve damage in me, too, but I need to see a neurologist to determine if current symptoms, 8 years later, are the result of the chemo, Aromasin, or something else/more. Ugh! I'm getting too old for all of this "stuff." I'm glad if my true story encourages you, too. Thank you for your thoughtful and loving response. 🙂 God bless, Dear.

Blessings to you, Goldengirl2!!

REPLY
polkagal | @polkagal | Dec 2, 2019
In reply to @miraclegirl "I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It..." + (show)
@miraclegirl

I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It was only found during the surgery for a "common" uterine cancer. The serous endometrial cancer was found during the surgery in 3 lymph nodes. It had not shown up in the uterine biopsy pre-surgery. Had complete hysterectomy. Had carbo/platin chemo, no radiation. Following the chemo, my oncologist at the time urged me to stay on Aromasin by mouth as long as possible. I have continued on Aromasin now for 8 years. My current oncologist says she will not approve of continued use of Aromasin after 10 years as she doubts it would have any affect.

I would like to know if anyone reading this has been on Aromasin longer than 10 years, and what side effects have been noted. I am having some nerve related symptoms in my extremities, but don't know if they are related to the Aromasin, or something else, possibly Parkinson's.

I would also like to add this little footnote: My surgeon told me fairly recently that "they" had not expected me to survive this long. In fact, apparently they had not expected me to survive long at all after the chemo. He did not explain any further and I didn't ask.

But, dear ladies, I am still here at 82 years of age, 8 years post diagnosis. How much longer I will be around, I don't know. What I do know is that there is a God and He does miracles. So do your best at beating this, and pray.

Sent with love to each of you,
MiracleGirl

Jump to this post

@miraclegirl thank you for sharing your story, your strength truly inspires me! I am new to this journey, having begun it in the summer of 2018, diagnosed with 1A uterine serous cell. Had complete hysterectomy, Carboplatin & Taxol, and brachiotherapy. I finished with it all Nov., 2018, and I just celebrated 1 year being NED. I am not familiar with Aromasin? But chemo left my feet pretty numb, even now. Sometimes it seems better - maybe I am just used to it? - but mostly it is always there. Not sure it will ever go away completely, but I'm not complaining. You are right, there is a God who does miracles, and we need to pray! I will pray for you 🙂

REPLY
miraclegirl | @miraclegirl | Dec 3, 2019

Thank you! I had shooting pains especially down my legs during chemo. Now they are pretty much gone, but I have "jerks" in hands, finger, arms and legs. Don't know if it is caused by Aromasin which is a little pill taken by mouth daily for "breast cancer." My doctor told me there was no drug for serous endometrial cancer followup, so they gave me that. They never expected I would still be here. Surprise them, dear post-CA treatment sister, by God's grace!!! I will pray for you, too, "Polkagal."

REPLY
1 reply
glenda007 | @glenda007 | Dec 3, 2019
In reply to @miraclegirl "I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It..." + (show)
@miraclegirl

I am new here. Was diagnosed with serous endometrial cancer in early 2011, stage 3C. It was only found during the surgery for a "common" uterine cancer. The serous endometrial cancer was found during the surgery in 3 lymph nodes. It had not shown up in the uterine biopsy pre-surgery. Had complete hysterectomy. Had carbo/platin chemo, no radiation. Following the chemo, my oncologist at the time urged me to stay on Aromasin by mouth as long as possible. I have continued on Aromasin now for 8 years. My current oncologist says she will not approve of continued use of Aromasin after 10 years as she doubts it would have any affect.

I would like to know if anyone reading this has been on Aromasin longer than 10 years, and what side effects have been noted. I am having some nerve related symptoms in my extremities, but don't know if they are related to the Aromasin, or something else, possibly Parkinson's.

I would also like to add this little footnote: My surgeon told me fairly recently that "they" had not expected me to survive this long. In fact, apparently they had not expected me to survive long at all after the chemo. He did not explain any further and I didn't ask.

But, dear ladies, I am still here at 82 years of age, 8 years post diagnosis. How much longer I will be around, I don't know. What I do know is that there is a God and He does miracles. So do your best at beating this, and pray.

Sent with love to each of you,
MiracleGirl

Jump to this post

I am also grateful for you post. I have serous endometrial cancer, stage 4, and was given a very dire prognosis in January . I was given 'non-curative" chemotherapy earlier this year but denied radiotherapy "because it wouldn't extend my life". I traveled to Australia (from New Zealand) to get it where attitudes were more positive and technology more advanced. I have recently been prescribed Lexatrole, replacing Tamoxafen. Letrozole is an aromatase inhibitor, like Aromasin. My tumour was estrogen sensitive and I am post-menopausal. I had to have a bone scan before I started Letrozole , and will have regular ones, as a thinning of the bones is one risk with it. I continue to feel well and am doing my normal activities. I am currently training for a 300 km bike trail from Mount Cook to the sea over 5 days. I look forward to making my 80's like you!!

REPLY
1 reply
miraclegirl | @miraclegirl | Dec 3, 2019

Glenda007, woman of great courage! I so appreciate your response and sharing!!! Thank you so much for sharing this with me. I will ask my doctors about this Lexatrole. Glad to hear there is another followup drug for us. I wish my original oncologist were still available to me. May I pray for you in your journey? If you are so inclined, please stay in touch with me, and I will do same with you. I will also ask my current oncologist about this drug next time I see her. Do you know who the manufacturer is? Pfizer has been providing my Aromasin via their patient asistance program. Every year I have to reapply. Don't know yet if they will continue for 2020. Hoping to hear soon. Many thanks for sharing your journey with me, Glenda.

I wish I could be around to hear you say, "Hey, I made it! My 80th birthday!" You go, Gal!!

Judy (Miraclegirl)

REPLY
1 reply
goldengirl2 | @goldengirl2 | Dec 3, 2019
In reply to @glenda007 "I am also grateful for you post. I have serous endometrial cancer, stage 4, and was..." + (show)
@glenda007

I am also grateful for you post. I have serous endometrial cancer, stage 4, and was given a very dire prognosis in January . I was given 'non-curative" chemotherapy earlier this year but denied radiotherapy "because it wouldn't extend my life". I traveled to Australia (from New Zealand) to get it where attitudes were more positive and technology more advanced. I have recently been prescribed Lexatrole, replacing Tamoxafen. Letrozole is an aromatase inhibitor, like Aromasin. My tumour was estrogen sensitive and I am post-menopausal. I had to have a bone scan before I started Letrozole , and will have regular ones, as a thinning of the bones is one risk with it. I continue to feel well and am doing my normal activities. I am currently training for a 300 km bike trail from Mount Cook to the sea over 5 days. I look forward to making my 80's like you!!

Jump to this post

And I just cycled the pyranees, did a triathlon in august and will do a granfondo ride next Sept.! Neither of the drugs you and miraclegirl were given were offered to me? I guess I need to know the pathology of my tumour. More research. It seems to never end but this is a good thing! Ecstatic to here you are training and the bike ride sounds intriguing. I am in Canada. What drugs made up your “non -curative” chemo? What an odd phrase to attach to out..Keep setting goals and reaching them that’s what I’m setting my mind to do. Ive been NED since May 2018 now. Chemo ended Oct. 31/18 but my oncologist says the NED goes from when the surgery removed it? They also said they were going for curative not palliative care. I will be asking about the drugs you tow ladies have mentioned. God bless all of us!

REPLY
1 reply
goldengirl2 | @goldengirl2 | Dec 3, 2019
In reply to @miraclegirl "Thank you! I had shooting pains especially down my legs during chemo. Now they are pretty..." + (show)
@miraclegirl

Thank you! I had shooting pains especially down my legs during chemo. Now they are pretty much gone, but I have "jerks" in hands, finger, arms and legs. Don't know if it is caused by Aromasin which is a little pill taken by mouth daily for "breast cancer." My doctor told me there was no drug for serous endometrial cancer followup, so they gave me that. They never expected I would still be here. Surprise them, dear post-CA treatment sister, by God's grace!!! I will pray for you, too, "Polkagal."

Jump to this post

I suspect its the late effects of chemo as I have the same thing and have never been on the drug of which you speak. The leg jerks are quite painful and usually happen at night in bed..

REPLY
glenda007 | @glenda007 | Dec 4, 2019
In reply to @miraclegirl "Glenda007, woman of great courage! I so appreciate your response and sharing!!! Thank you so much..." + (show)
@miraclegirl

Glenda007, woman of great courage! I so appreciate your response and sharing!!! Thank you so much for sharing this with me. I will ask my doctors about this Lexatrole. Glad to hear there is another followup drug for us. I wish my original oncologist were still available to me. May I pray for you in your journey? If you are so inclined, please stay in touch with me, and I will do same with you. I will also ask my current oncologist about this drug next time I see her. Do you know who the manufacturer is? Pfizer has been providing my Aromasin via their patient asistance program. Every year I have to reapply. Don't know yet if they will continue for 2020. Hoping to hear soon. Many thanks for sharing your journey with me, Glenda.

I wish I could be around to hear you say, "Hey, I made it! My 80th birthday!" You go, Gal!!

Judy (Miraclegirl)

Jump to this post

H Judy (Miraclegirl). Aromasin seems to have served you very well indeed. The doctor who prescribed it may have been ahead of their time. I hope the Letrozole does the same for me. It is made by Mylan, a New Zealand company. One of my reasons for keeping active is to maintain a strengthening of my bones. There are a couple of other drugs that have been mentioned to me, Keytruda and Avastin. Avastin obstructs the cancer from developing its own blood supply. Keytruda is being found to be effective with a number of cancers but I'm not sure if there has been any trials completed for endometrial cancer. As you say, there is little research done on our particular diagnosis and stage. I am about to have a CT scan which will show how effective the radiotherapy I had was. Fingers crossed. It was very hard to go through, all the more so because I had to go to Australia to get it. However there are few effects of it hanging on now. I would be very interested to hear about any other factors which you think contributed to you remarkable survival. Glenda

REPLY
glenda007 | @glenda007 | Dec 4, 2019
In reply to @goldengirl2 "And I just cycled the pyranees, did a triathlon in august and will do a granfondo..." + (show)
@goldengirl2

And I just cycled the pyranees, did a triathlon in august and will do a granfondo ride next Sept.! Neither of the drugs you and miraclegirl were given were offered to me? I guess I need to know the pathology of my tumour. More research. It seems to never end but this is a good thing! Ecstatic to here you are training and the bike ride sounds intriguing. I am in Canada. What drugs made up your “non -curative” chemo? What an odd phrase to attach to out..Keep setting goals and reaching them that’s what I’m setting my mind to do. Ive been NED since May 2018 now. Chemo ended Oct. 31/18 but my oncologist says the NED goes from when the surgery removed it? They also said they were going for curative not palliative care. I will be asking about the drugs you tow ladies have mentioned. God bless all of us!

Jump to this post

The chemo drugs were the standard Carboplatin & Taxol, which the tumour responded to initially, but then didn't. I was denied radiotherapy sandwiched between chemo cycles, and at the end because it was not expected to contribute to my survival. My cancer seems to have progressed before I had surgery, and then I had another 3 months wait before chemo.
You must been exceedingly fit. I presume the Pyranees are the ones in France. I must check out the Granfondo ride. I am pleased that you were regarded as curative and are now NED.

REPLY
View MoreView Less
Please sign in or register to post a reply.