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.

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Marita | @embeth99 | Nov 9, 2020

Oh, Golden Girl 2, I am so very sorry to hear this news. You have been through a really rough time. I’m adding you and polkagal to my prayer list again. Can I ask how you knew about the tumor? Was it your CA-125 or did you have physical symptoms? I’m so glad your surgery was successful. May this remission be forever.

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goldengirl2 | @goldengirl2 | Nov 9, 2020

yes it was 2 years remission for me too then ... of all unheard of things it appeared as a small tumor in my left cerebellum!! the oncologist was stunned.. did surgery and the tumor just popped out and no signs anywhere else of it! no further treatment as they are going to take the watch and see approach 🤷‍♀️ oh and 5 weeks after my original brain surgery i had to get it all done again due to infection🥱 but onward and upward I say.. thanks for thinking of us!

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polkagal | @polkagal | Nov 9, 2020

@goldengirl2 and @embeth99 Hello friends! Just had another check-up round, which always makes me think of you both. Praying all is well with each of you. All continues to go well for me, I am 2 years in remission now, and very grateful. Embeth99, how goes your work with Helpline? Wishing the best for both of you 😊

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polkagal | @polkagal | Jun 12, 2020
In reply to @starko "HE4,S is a test for a certain protein in your blood. My Mayo gyn/oncologist/surgeon feels it..." + (show)
@starko

HE4,S is a test for a certain protein in your blood. My Mayo gyn/oncologist/surgeon feels it is the most important indicator of all. My local oncologist did not use it until I asked for it. Why not be certain?

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@starko thank you for clarifying. I plan to ask my gyn/onc/surgeon about this when I see her next week.

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goldengirl2 | @goldengirl2 | Jun 12, 2020
In reply to @starko "HE4,S is a test for a certain protein in your blood. My Mayo gyn/oncologist/surgeon feels it..." + (show)
@starko

HE4,S is a test for a certain protein in your blood. My Mayo gyn/oncologist/surgeon feels it is the most important indicator of all. My local oncologist did not use it until I asked for it. Why not be certain?

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I have asked many times about the protein aspect as my pathology says over-expression of p53.. which is a protein ... i will look into this test. Thank you

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starko | @starko | Jun 12, 2020
In reply to @polkagal "I don't know what HE4 or S are either, don't believe I have had that done?" + (show)
@polkagal

I don't know what HE4 or S are either, don't believe I have had that done?

Jump to this post

HE4,S is a test for a certain protein in your blood. My Mayo gyn/oncologist/surgeon feels it is the most important indicator of all. My local oncologist did not use it until I asked for it. Why not be certain?

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2 replies
polkagal | @polkagal | Jun 12, 2020
In reply to @starko "Goldengirl2: Blood work is fine, if your CA125 and HE4,S are within normal range, but be..." + (show)
@starko

Goldengirl2: Blood work is fine, if your CA125 and HE4,S are within normal range, but be alerted if either of these tests seem to increase in four consecutive tests, even if they are still within normal range. It may be a very early sign of recurrence. Even CT scans might not be beneficial at that early stage.

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I don't know what HE4 or S are either, don't believe I have had that done?

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polkagal | @polkagal | Jun 12, 2020
In reply to @embeth99 "Thank you, Polka Gal. I wish you and Golden Girl continuing excellent results on your check-ups...." + (show)
@embeth99

Thank you, Polka Gal. I wish you and Golden Girl continuing excellent results on your check-ups. I have been thinking about you because I have become involved with an organization called SHARE in NY. They have been around a while offering support for breast and ovarian cancer survivors. This year they added uterine cancer survivors to their family. I am training to join their Helpline. They presented an excellent one-hour online program recently by Dr. Jennifer Mueller, gynecologic cancer surgeon at Memorial Sloan Kettering Cancer Center on the newest research for uterine cancer, including USPS. You can watch it here: https://www.sharecancersupport.org/new-treatment-options-for-uterine-cancer/ Wishing you all the best.

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Thank you, embeth, for sharing this! I look forward to checking it out : ) How wonderful of you to take the time to join their Helpline! The new research that is taking place is very exciting!! Wishing you all the best, as well.

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polkagal | @polkagal | Jun 12, 2020
In reply to @goldengirl2 "Hello there ladies! you remembered, how kind. Mine is 2 weeks away and he’s only ever..." + (show)
@goldengirl2

Hello there ladies! you remembered, how kind. Mine is 2 weeks away and he’s only ever done blood work no CT scan since March 2019..hmm. No reason to believe all is not well so here’s to my almost last 3 month check up..After October I should be able to move to 6 month ones.. sending good vibes to you and nice to be roaming fee outside again :0

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@goldengirl, you are absolutely right, no reason to believe all is not well, and happy to hear all is well with you! As we all know, each of our situations is different, one from the other. My last treatment was in Nov., 2018. My protocol for the first 2 years after that is a check-up every 3 months with pelvic exam and a CA125 blood test, and every 6 months I get a CT scan. So every other check-up, I get the scan, and I am due for one this check-up. My understanding is that if all continues to go as well as it has, I will then switch to 6-month check-ups with a CA125 check, and I think a CT scan once a year, for the next 3 years - so this switch would begin Nov., 2020. And I should be able to have my port removed as of Nov., 2020, as well - which will be wonderful! Of course with COVID, who knows. I will be sending good vibes to you in return, that all goes well for you in 2 weeks 🙂

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goldengirl2 | @goldengirl2 | Jun 12, 2020
In reply to @starko "Goldengirl2: Blood work is fine, if your CA125 and HE4,S are within normal range, but be..." + (show)
@starko

Goldengirl2: Blood work is fine, if your CA125 and HE4,S are within normal range, but be alerted if either of these tests seem to increase in four consecutive tests, even if they are still within normal range. It may be a very early sign of recurrence. Even CT scans might not be beneficial at that early stage.

Jump to this post

I don’t know what HE4 or S is.. that’s not part of my blood work protocol

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