Uterine Papillary Serous Carcinoma (UPSC): any others here???

vnorthrup said:

USPSC

I was diagnosed in Oct. 2012 during my annual pap smear. Had a shock when told I had cancer without having any symtoms. Had the robatic surgery and diagnosed as stage 1 A but unfortunaly the cell was aggressive. That is when I panicked and decided to get a second opinion with treatment options at Md Anderson. My oncologist at home gave several choices but he was very confusing. Glad I went to a major cancer center and was able to return home with thier protocol of treatment. I had 5 internal brachytherepies and 6 carbo/ taxol chemos. I was able to tolerate the chemo well, so I can not complain .I did not have lasting side effects except the chemo brain. Getting check ups every 3 months consisting of vaginal cuff smear and ca125. and evey 6 months a cat scan. So far so good but living with the fear of recurring.

Would like to hear how you are being follow up. My treatments ended in April 2013.

 

 

Hi, vnorthrup,

This is an old thread with 541 responses. Some of these women are no longer with us. You might want to start a new thread . I am monitored by my gyn oncologist every three months with a CA -125 blood test , an internal exam and questioning about how I feel. I've been told that CAT scans in my situation would not extend my survival and if my cancer recurs I would start having symptoms about 3 weeks after the CAT scan identified a recurrence . I was diagnosed with stage 3a UPSC , an aggressive cancer .

Best Wishes ,

cathy

vnorthrup said:

USPSC

Thank you. How are you doing? I talked to my NP and she said they wouldd not do CAT scan unless I had symtons. I thought it was going to be more frecuent. Lets hope and pray. Our cancer type has not had a lot of attention as it was rare but locally they are seen more. Hoping you are well. God be with you.

You are in a very good position to survive your cancer as it is stage 1. What grade is your cancer ? UPSC, the cancer I was diagnosed as having is always aggressive- grade 3. I am doing fine- NED- no evidence of disease . So far so good. Of course, I have a 50/50 chance of a recurrence so I am not celebrating quite yet. It has been almost a year since my treatment ended (March 20th, 2014 ).

God be with you, too!

Cathy

hermothersdaughter said:

thank you

Ro10, 

thank you for all of your posts. i have been readiig through all of the forums, discussions. i look forward to reading yours whenever i see your picture. you have been very helpful, and hopeful in this.

my mother was diagnosed about 2 yrs ago. she has had a recurrance that she is treating for now. we will find out if the tumors are shrinking next month. 

the drs are very nice; but not so informative, or clear for me, or any of us to understand.  her chemo dr, when pressed for info, as we have been so unclear in our undrstanding of it, has said  she is terminal. st 4 non op,  6 rounds of chemo every 21 days. if it takes she will move to  chemo every 21 days for as long as we can extend her life

her oncologist has said she is chronic~ which in a way, i suppose is the same thing~ provided the tumors shrink, and she can go on for more chemo. at this point~ honestly, we ar just praying, and tryig to stay positive. we are staying positive.

my father passed of pancreatic cancer last year. we  were very,  maybe foolishly optomistic to try and get those tumors shrunk, and keep him around a bit.  so i am praying that this situation is completely different, and that our optomisim isn't denial; but i always feel.. as long as someone is alive, there is always hope that solutions are found. it is helpful to see women  living, thriving so long afetr their diagnosis. thank you to all of you here.

blessings, jennie

I am sorry to hear about your Mother having a recurrence.  I hope her treatment is shrinking the tumors.  As I have said before I was told at diagnosis that my Cancer was not curable, but treatable like a chronic disease.  So I have had chemo three different times.  I also had intense radiation to a lymph node.  I have been in treatment since 2009, and I know I will need chemo again in the future.  I have been lucky that all my recurrences have been in the lymph nodes, and I can still receive  the initial chemo drugs.  But I know there are other drugs available.  I have not ever given up hope.  I too believe there is always hope.

There are people who have been on chemo for a long time to control their tumor growth.  If you read the Ovarian Board  you will find some that have been on chemo for a very long time.

I am sorry to hear about you Father, too.  It is hard when your loved ones have Cancer.  I think in many ways the cancer is harder on family and loved ones.  Those of us with Cancer are lucky to have family and loved ones to support us.

Jennie I am glad you have found the posts helpful.  If you start a new post you will probably get more responses.  This is a very long thread and sometimes difficult to find the new posts that are posted.  

 Please come back with any questions or fears you may have.  In peace and caring.

Hi.  I just came across this message board.  I was diagnosed with and treated for UPSC in early 2015.  I was very lucky that it was caught as a shear fluke in stage 1A.  I just happened to keep mentioning symptoms associated with stage 3-4 (continued pressure in lower abdomen), so eventually my doctor sent me for a vaginal ultrasound, which picked up that there was something wrong.  I'm glad my doctor listened to me although my actual symptoms turned out to be unrelated to anything.  I almost didn't go for the ultrasound, because by that time she had sent me for various other tests which all came back negative, and it seemed like a waste of time and money.  My chemo nurse told me that all women post-menopausal and/or over 50 should demand vaginal ultrasounds as part of their annual checkup, because UPSC is not detected in a pap test.  I had 3 rounds of chemo, radiation, lost my hair, but 2 years later I am fine (knock wood) and feeling very grateful.

Hello all,

I am so glad to have found this discussion board for my personal information and seeking support for my mother. As stated in the subject line, my mother was diagnosed with UPSC just this past month... it's all moved so quickly. She's 61, noticed some recurring bleeding (unusual for post-menopausal, of course)... made an appointment with her GYN and with an abnormal pap, they did a biopsy. WIth less than a week between the initial appointment, she had the biopsy and was immediately scheduled for a complete hysterectomy- (cervix, ovaries, uterus, fallopian tubes, and lymph nodes). Her Pathology report came back confirming the biopsy results as UPSC, staged at 1B. 13/17 (layers, I assume?) of uterine wall affected by the cancer. She was told she is to have around 6 months of Chemo (not sure which kind yet) and Radiation.

I'm in a stage of shock as this has been a whirlwind... it's been all so fast and scary. I know my job as a daughter is to support her, but also research and educate ourselves. I look forward to learning about you ladies, and learning more about this rare cancer type as we go on.

Thank you,

Decor620 :-)

Hi CK,

I sent you a note yesterday on another thread. Just wanted to say that this thread is very old so if you have any questions, you may want to start a new one. Linda P. actually was the one that started this discussion for all of us. She made a huge difference for everyone that finds this site for sure!

I'm glad you found us too. We are an active group who will share just about everything. Nothing is off limits and someone usually has an answer.

Love and Hugs,

Cindi

I was trying to go through all the posts trying to find the more recent ones, but it seems all I see are in 2010...  How is everyone?  My mom was diagnosed This past summer 2017.  The week of Thanksgiving marked her last carbo/taxil chemo.  She did 6 treatments.  We are awaiting a hysterectomy in January.  Right now her last scan showed the cancer was still in lymph node in pelvic area, but she has done amazing!!! Usually only 2 sick days per treatment and her attitude and faith have been so postive throughout this entire journey.  I have prayed and researched more the past few months than i ever have in my entire life.  I have read so many survival stories of people who changed their diets completely.  Mostly vegan diets.  No red meat or dairy mostly.  Had anyone tried this?  We start the strict diet in January and im going to make aure i keep all my notes up to date.  Please if anyone has any help i am open and i am ready to share anything that we try that helps... From hanging scriptures all over her house, different oils, organic foods.  You name it, we are doing it.  Prayers for all you currently going through this.   My heart pours out to you!

Jennykay18 said:

UPSC stage ivb

I was trying to go through all the posts trying to find the more recent ones, but it seems all I see are in 2010...  How is everyone?  My mom was diagnosed This past summer 2017.  The week of Thanksgiving marked her last carbo/taxil chemo.  She did 6 treatments.  We are awaiting a hysterectomy in January.  Right now her last scan showed the cancer was still in lymph node in pelvic area, but she has done amazing!!! Usually only 2 sick days per treatment and her attitude and faith have been so postive throughout this entire journey.  I have prayed and researched more the past few months than i ever have in my entire life.  I have read so many survival stories of people who changed their diets completely.  Mostly vegan diets.  No red meat or dairy mostly.  Had anyone tried this?  We start the strict diet in January and im going to make aure i keep all my notes up to date.  Please if anyone has any help i am open and i am ready to share anything that we try that helps... From hanging scriptures all over her house, different oils, organic foods.  You name it, we are doing it.  Prayers for all you currently going through this.   My heart pours out to you!

jennykay18, no doubt you found this wonderful group by searching the world wide web and Linda's post.  What a beautiful legacy to Linda!  As you saw, this is a rather old thread and it gets very hard to find new posts added to it.  I would recommend you start a new thread so all the ladies can welcome you - which they will do since it is a terrific group.  

I am sorry you have had the need to find us, but you and your mother are welcome.  If you read through some of the threads you will see we will address anything asked!