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

lindaprocopio said:

Sad News
It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

Dear Linda
You are still an inspiration. Over the past 3 years you helped more people dealing with UPSC than you know. So many read your updates and prayed for you over the years. Thank you for being an amazing and loving person. (((((((((( Linda )))))))))) Hugs to you.

lindaprocopio said:

Sad News
It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

I am so sad to learn that Linda has lost her hard-fought fight against UPSC. I always hoped she would be, like me, one of the "lucky ones" who beat this cancer.

My sincerest condolences to the family that was so precious to her and to all her online friends who she supported as they battled this terrible disease.

debrajo said:

Hi!  Sorry to meet this way,

Hi!  Sorry to meet this way, but soooo glad you found us so early.  I am UPSC also and I am 2 1/2 years out of treatment!  Don't freek out to much...the diagnosis is a lot to handle now.  DO NOT RESEARCH ON THE NET!  Old stuff and badly mis-information.  Some of the reports are 20 years old!   The UPSC is a bad type of cancer and is agressive, but after surgery I had the standard six rounds of Taxol and Carboplatin and five rounds of internal radiation.  It's hard, but so very doable!  Try not to stress(very bad) rest, take this in baby steps, breath, and smile!  We are here to help, there are several UPSC ladies here besides me.  Ask ANYTHING, there is nothing out of bounds.  I am up late every night if you want to talk,my internet is spotty, but I try to get on every day.  Don't expect the worse, there is life AFTER cancer!  Best, Debrajo

Thanks!
DebraJo,

Thank you for your words of encouragement...it means so very much and it helps! Doc told me not to go on I Internet....which, of course, I did...big mistake! No further research on my part--planning to trust my oncologist and move forward.

Thanks again!

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Treatment for UPSC confined to a polyp

I, too, was diagnosed with Stage 1a UPSC carcinoma, confined to a polyp, and was given several choices of treatment: 6 rounds of carbo/taxol followed by several vaginal brachytherapy treatments (generally 3 treatments, but some radiologists break the dose into 5 treatments to further minimize side effects); chemotherapy alone, radiation alone, or observation. My gyne/oncologist strongly recommened choice #1; and based on what I had read, I agreed that I wanted to hit the cancer hard and fast and give myself the best chance of "cure."

In 2005, the Yale University School of Medicine completed a study that reviewed the effectiveness of platinum-based radiation and vaginal cuff radiation in the largest group of women with Stage 1 UPSC ever to be studied up to that point. These are the study results, taken from the second article listed below:

Stage IA patients with no residual uterine disease had no recurrences, regardless of adjuvant therapy (n = 12). Stage IA patients with residual uterine disease who were treated with platinum-based chemotherapy had no recurrences (n = 7). However, 6 of 14 (43%) stage IA patients with residual uterine disease who did not receive chemotherapy recurred. The 15 patients with stage IB UPSC who received platinum-based chemotherapy had no recurrences but 10 of the 13 (77%) stage IB patients who did not receive chemotherapy recurred. One of the 7 patients with stage IC UPSC who received platinum-based chemotherapy recurred and 4 of the 5 (80%) stage IC patients who did not receive chemotherapy recurred. Overall platinum-based chemotherapy was associated with improved disease-free survival (P < 0.01) and improved overall survival (P < 0.05) in patients with stage I UPSC. None of the 43 patients who received radiation to the vaginal cuff recurred locally, but 6 of the 31 (19%) patients who were not treated with vaginal radiation recurred at the cuff. 

MD Anderson also recommends adjuvant treatment for ALL patients diagnosed with UPSC unless the patient has medical issues that would make the risk greater than the benefit. The rationale is discussed in the first article listed below, an excerpt of which follows:

According to Dr. Lu, serous malignancies can be aggressive regardless of the amount of tumor present. "The recurrence risk and patterns are the main reason why we would be very nervous about recommending observation alone," she explained. "Even when there is no sign of invasion, we know that UPSC spreads in other ways and has a high recurrence reat." However, aded Dr. Ramondetta, "It's hard to tell a patient who has a disease confined to a polyp that she needs extensive treatment, especially if there is just a small percentage of serous histology present." 

I would suggest doing your research and then finding a gyne-oncologist whose treatment recommendations are in alignment with what you have decided is best.

 

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

http://www.ncbi.nlm.nih.gov/pubmed/16005947

 

Jill

 

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Thank you all for your kind

Thank you all for your kind words and advice. The pathology lab estimates that they will have a report in 4 days. I'm requesting an appointment from MSK today. Is the best way to do this through their referral system or should I be researching specific doctors?

 

Surviving UPSC

Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago.  I have had 18 months of chemo and 45 radiation treatments.  I am currently in a clinical trial as I have a thrid recurrence.  The good news is that I am doing okay, still working full time and able to handle the treatment.  It's so important to stay as positive as possible, and to live each day to the fullest.  Friends, activities, artwork, church - these are all things that have helped me.  I talk to my cancer (your lease is up!  I want to evict you!!!)  I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com.  Let me know if you need any other thought or suggestions.  My thoughts and meditations are with you!!

.  

Momismyhero said:

My Mother
My mother was diagnosed with papillary serous carcinoma, stage 4c. I have read so many postings that begin with that sentence that it tears out a tiny piece of my heart each time I read a new one.
My 69 year old mother is coming home from the hospital tomorrow, after having a radical hysterectomy appendectomy, and removal of a tumor from the omentum. Her gyn/oncologist has said that its spreading, and that chemo will give her maybe a few more months. She will not agree to chemotherapy to gain just a few months more that will be spent ill, and in bed.
She has decided to use naturalpathy, homeopathy, and essiak tea.
Have any of you ladies treated yourselves with these things instead of chemo? If so, how have they worked for you? Are there other things to try?
I want to help her in any way I can. She is determined in her decision, and I support her wishes fully, even though its hard to imagine life without her. I know her strength and faith will see her thru this. I appreciate any advice you have to offer.
Thanks,
Cari

My mother

Cari, my mother too has stage 4. We just returned home from her surgery. I am so saddened bc the doctors are beating around the bush with her about her prognosis, and it is breaking my heart. I had to ask the aweful questions bc they wouldn't flat out tell me. I would like to know is your mom still with you now?

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Get a second opinion

Dear Florida,

While my UPSC was luckily caught early, stage 1A, and I had hoped that since it was early that I wouldn't have to have the chemo/radiation/chemo sandwich, I did.  Looking back and not knowing anything about cancer I am so happy I did!! 

While I was VERY fortunate to have mild side effects, my radiologist even said to me, "you don't understand, people don't do as well as you did", I know it is what I had to do to beat this evil, beast down. Yes, I did lose my hair and my friends and I all cried when it got shaved, and then I took a picture, bald, surrounded by bald men I work with. 

I can't wait to participate in the National Race to End Women's Cancer in DC this November and meet some of the sisters who have battled this disease like me. http://www.foundationforwomenscancer.org

 

"Never, ever, ever, ever, ever, ever, ever, give up."  - Winston Churchill

Good luck and God bless.