Research study on UPSC

Abbycat2 said:

You're welcome, Debra

Yes, the overall survival for stage 1a/1b is 94% for women who received the platinum based chemo and brachytherapy.  I think this means that some of those 6% died from causes other than UPSC.  These statistics suggest that you have a low risk of recurrence, as the 5 year disease free survival in this study was 82%. I think you are in the clear, thank goodness!  

Take care,

Cathy

this study was from 2012.  I feel they have made progress with UPSC since then.  It  has been 6 years this month since I first  heard those dreaded words" you have Cancer".  It was 5 years in January since I learned I had UPSC.  I have not been " disease free" since my diagnosis.  But I feel I have had good quality of life even with the recurrences.  I know I am one of the lucky  " survivors" diagnosed with stage 3-C.   I hope those statistics improve with the next study they do.  Thanks for sharing.

joannewtta said:

I was diagnosed with UPSC in June 2013. DiVinchi surgery in July staged at a 3C2 I believe. Followed with 18 carbo and taxol, then 4 bracytherapies. I read about a 36% survival rate. Tomorrow is my third 3month checkup and I want to make sure my oncologist does a CA125. It was 39 after surgery and has continued to go down. In July it was 11. I just turned 69, was average age of UPSC at diagnosis. I feel great but have to admit I get nervous just before a checkup. Ro10 I read and appreciate all your posts along with all the other incredible women posting here. My husband is great but I don't want to talk about being nervous; it just makes him worry more. I want an honest answer from my Dr about survival chances. RO, WHEN WAS YOUR FIRST RECURRANCE?

my first recurrence was 18 months after I finished my sandwich treatment of chemo  and radiation.  No symptoms, just CAT scan showing enlarged lymph nodes.  CA -125 was 1700. When I started chemo the second time.  My second recurrence was only 7 months after I finished 3 rounds of taxol/Carbo and 4 rounds of  taxol/ cisplatin.  My marker went to 3200.  Again no symptoms.  cAT scan showed enlarged lymph nodes.  

Started Aromasin after the third cycle of chemo.   CA-125  was 1582' but CAT scan showed only one enlarged lymph node.  Had the stereotactic radiation to that lymph node.  

I think they have made a lot of progress with treatment of UPSC.  I don't think the doctor can really tell you about survival rates.  Everyone is different.  As Jan used to always say " we are all a statistic of one".  the doctor told my husband when I was diagnosed that when a recurrence occurs the outlook is poor.  I have proved him wrong.

when I recurred again after only 7 months, I asked if recurrences would come more frequently.  The nurse practioner said " usually they do".  Again I have proved them wrong.  It's been 29 months since my last chemo.  So don't give up hope.

it is normal to feel nervous before each check up. Your CA-125 is normal, and you say you feel great.  So find some joy in each day and be appreciative for each day you have.  I am glad you have the support of your husband.

if you have anymore questions, feel free to ask.  In peace and caring.

Abbycat2 said:

I agree, Ro

I agree, Ro, that this study is old (stats from 1987 to 2009) and much progress has been made in the treatment of UPSC.  Unfortunately, that is usually the case with these research studies.   My oncology nurse said that cancer is basically treated today like a chronic condition.   Also, I remember reading somewhere that in the not so distant past not much was done for women with stage 3 or 4 UPSC disease.  Maybe they got radiation, but probably not chemo.  What I personally liked about this study was that I learned that I at least have a chance of long-term survival; initially I thought I had no chance at all.  I also learned in October (2013) that I had cancer and I am now, one year later, in a much better place. My cancer diagnosis has changed me, mostly in positive ways.  I feel good and am enjoying each and every day and looking forward to new adventures. I leave for a trip with family to the Galapagos Islands next week and I can't wait!  Cancer has made me realize that I only live once and I am going to live it up! 

Glad to see that you are doing better, Ro, and that you are done with your treatment.   Hopefully, your cough is going away, too, and you are sleeping better.  The weather now in Florida has cooled down and is wonderful. 

Best wishes,

Cathy

 

Thank you for posting this.  It's the most concise review I've read and only  two years old.  As a 1a, it gives me lots of hope.  Previously I have read that UPSC isn't usually diagnosed in the early stages and many women don't have symptoms.  This study had a lot of 1a, 1 b.  I would love to know how their cancers were discovered.  I had symptoms and a pap showed abnormal cells.  I was lucky.  In addition to decreasing the frequency of paps, the system now is trying to tell us that an annual exam isn't needed for many of us.  Although there isn't supposed to be a hereditary component, I'm grateful my daughter's gyn is choosing to follow her very closely.  You never know what they'll figure out next.  We certainly don't know everything.

Ro10 said:

Joanne

my first recurrence was 18 months after I finished my sandwich treatment of chemo  and radiation.  No symptoms, just CAT scan showing enlarged lymph nodes.  CA -125 was 1700. When I started chemo the second time.  My second recurrence was only 7 months after I finished 3 rounds of taxol/Carbo and 4 rounds of  taxol/ cisplatin.  My marker went to 3200.  Again no symptoms.  cAT scan showed enlarged lymph nodes.  

Started Aromasin after the third cycle of chemo.   CA-125  was 1582' but CAT scan showed only one enlarged lymph node.  Had the stereotactic radiation to that lymph node.  

I think they have made a lot of progress with treatment of UPSC.  I don't think the doctor can really tell you about survival rates.  Everyone is different.  As Jan used to always say " we are all a statistic of one".  the doctor told my husband when I was diagnosed that when a recurrence occurs the outlook is poor.  I have proved him wrong.

when I recurred again after only 7 months, I asked if recurrences would come more frequently.  The nurse practioner said " usually they do".  Again I have proved them wrong.  It's been 29 months since my last chemo.  So don't give up hope.

it is normal to feel nervous before each check up. Your CA-125 is normal, and you say you feel great.  So find some joy in each day and be appreciative for each day you have.  I am glad you have the support of your husband.

if you have anymore questions, feel free to ask.  In peace and caring.

Ro, I just want to say thank you for continueing to post your journey here. You are such an inspiration. I read about all that you've gone through and it gives me such hope and I'm sure I'm not alone in that!

Kathy

Abbycat2 said:

Hoping for the best for you, AWK

Hi, AWK,

I am not platinum resistant, at least not to my knowledge, but I was diagnosed with UPSC, stage 3A.  I finished treatment in March, 2013, with 6 rounds of carboplatin and taxol.   I think the genome testing will be a tremendous help in selecting appropriate treatment for you.  Can radiation treatment or cyber knife be considered?  I am glad to hear that you are continuing to work and to enjoy life.  Enjoying life right at this very moment is what life is truly about.  I just want you to know that I am thinking about you and hoping that you receive the very best care and treatment.  Were are you receiving your treatment? 

Warm Wishes,

Cathy  

Cathy, thanks for the good wishes!  I will take them!  Given the location of the various tumors, the spreading (not clustered or close to each other) and my radiation history radiation isn't an option.  Neither is any form of surgery due to vascular involvement.  I am in the San Fernando Valley of Los Angeles.  I am being treated at the Leavey Cancer Center at Northridge Community Hospital.  They have gotten opinions from the City of Hope and UCLA.  Both continue to consult on my case along with MDAnderson, Sloan Kettering and the National Cancer Institute.  According to the doctors I am in rarified strata.  I told them that when they told me I was a statistic of one I am pretty sure this isn't what they had in mind.  My frozen slides were sent out to Foundation One for testing; this company is affiliated with Sloan Kettering.  The side benefit is that others will benefit from my case too!  That makes me happy.  I will keep you posted and also send you wishes for good health and a long, happy life!  Anne

debrajo said:

Thanks

Thanks so much Cathy!  If I read it right, my 1a/1b, with  PCHR {platium based taxol/carbo, and 5 bryanchtheropy}gives me a probable 5 year rate of 94 % survival rate.  Sounds better then the 30/70 maybe I got at first.  I am comming up on 4 1/2 years in Nov.  Did I maybe understand it wrong, do you think?  Thanks again, living in the moment, Debrajo

Haven't been on the site for quite awhile.  Just wanted you to know that I was diagnosed Stage 2A UPSC and clear cell.  Cancer Free 6 years tomorrow!!!  I believe it's mind, body and soul (along with treatment).  Get Mad as Hell and tell yourself it's not going to get you.  Life is wonderful, don't stress, stress is so harmful.  Plus I eat a piece of raw ginger everyday, or put it in my green tea.  

Smile and live life!!  

Marge

shortmarge said:

6 Years

Haven't been on the site for quite awhile.  Just wanted you to know that I was diagnosed Stage 2A UPSC and clear cell.  Cancer Free 6 years tomorrow!!!  I believe it's mind, body and soul (along with treatment).  Get Mad as Hell and tell yourself it's not going to get you.  Life is wonderful, don't stress, stress is so harmful.  Plus I eat a piece of raw ginger everyday, or put it in my green tea.  

 

Smile and live life!!  

 

Marge

Congratulations on 6 years NED.  I'm glad Roberta told us that you were one of the original 10 that started this board.  I hope you have many, many, many more years NED.    I was diagnosed with UPSC stage 3A in June, 2013 and last chemo. was Jan. 2014, so I am working on my 1 year NED. 

Jeanette

Abbycat2 said:

Thank you, Anne

Thank you, Anne, and warm wishes to you as well.  Anne happens to be my favorite woman's name, spelled the way you spell it.  It was my dear mother's name and is my middle name.  I always wanted my first name to be Anne!  Short and to the point.  No, instead it is long- Catherine!!  I always have to spell BOTH my first name and my last name.  Bummer....  ;-) 

How wonderful to hear from an old timer on this board.  You made everyone's day.

Maggie_mac said:

UPSC recurrence & platinum resistance

Hello All, 

I haven't been here in quite a while because it always seemed difficult to find the UPSC group to follow-up.  Today I searched "papillary" and ended up here. 

I was diagnosed with UPSC 3 years ago and it will be 3 years next month that I had surgery.  Because of omentum and peritonal metastases my cancer is stage 4B.  I had 6 sessions of taxol/carboplatin in 2012 and my CA 125 stayed low for about 9 months.  I did another 6 sessions in 2013 and that lasted about 6 months.  I did another 6 sessions this spring with my last chemo in May.  It's been almost 3 years since I've used a hair brush!

My oncologist has already mentioned that I seem to be platinum resistant and has said the next step is probably Doxil.  I would be interested in hearing of any experience with this product.  From what I've read it seems to have some limiting cardiovascular side effects.

Overall, I feel pretty good, although sometimes I just lack the desire to do some of the things I used to enjoy.  My best wishes to everyone.

 

Maggie    

 

 

I am sorry that  the taxol/carb is no longer working for you.  I can't imagine 3 years without using a hairbrush.   Ihave had 3 different rounds of taxol/ platins but my hair grew back between the rounds.  I have been bald four times.  I had the sandwich treatment initially and my hair grew back between the radiation and last three chemos.

you said you had a hard time finding this site.  If you google CSN ( Cancer survivors Network) and lick on the discussion boards and then Uterine, you should get to this site.   Then put it in your favorites, or bookmark it.

on the top of the uterine discussion board there are boxes for " keywords or titles".  If you type Doxil in one of the boxes you will get posts from some that have been on Doxil.  You might want to do that on the Ovarian Board also.  There have been more ladies on Doxil on the Ovarian board.

my doctor has mentioned Doxil if needed in the future, but luckily I have not needed it.  Many talked about problems with " hand and foot" sensitivity and peeling of skin.

I am glad that overall you feel good.  Your body has been through a lot.  Wishing you the best with further treatment.  In peace and caring.   Please come back and let us know how you are doing.