Roll Call For UPSC only

AWK said:

Thanks!

i am confident that we will figure this out!  But I do have my down days; luckily they are few and far between!

Welcome Hopeful, MM, and Anne!

I'm very glad to meet you and glad you found us. Although I'm REALLY beginning to question the RARENESS of this diagnosis!

I know how scary this is.........but believe me knowledge is power and you're going to feel better the more you learn about this cancer. 

As you can see, many of us are NED for now, and hope to remain that way for a long time.

We're always here for each other and will help you in any way possible!

No question is off limits........so ask away. There's surely strength in numbers!

Hoping for the best for each one of you!! 

Hi, everyone!

I'm Jill, 63 years old in about three weeks, and a resident of Brooklyn, NY. I have not posted in a while, but I hope that some women will be encouraged by the fact that I had surgery for UPSC Stage 1a in May 2008 and have been NED since. I was treated at the St. Vincent's Hospital Cancer Center, which no longer exists, and continue to check in every year with my gynecologic oncologist at Mt. Sinai Hospital in Manhattan. My treatment was the standard six rounds of Carbo-Taxol, followed by five rounds of internal brachytherapy. I believe that diet and exercise contributed enormously to my healthy survival and used to post information that I had found about dietary methods of supporting cancer treatment/survival. Staying away from sugar, drinking green tea, and consuming a daily dose of turmeric/warm olive oil/pepper are still daily practices.

I don't know what I would have done without the group of women who post/posted on this board. The information that they provided was often more current and helpful than anything available in the medical literature. I can say without hesitation that the women here saved my life every bit as much as any medical treatment. 

Although I do not check in very often, I have shared a number of delicious anti-cancer recipes, which you may be able to find by searching for my name. My heart is with all of you.

Jill

Ro10 said:

Jill

It is so good to hear from you and that you are 6 1/2 years NED.  That is wonderful news and should encourage many of the new comers.  It is great that your diet and exercise has helped you tremendously.   May you have many more years of NED.  In peace and caring.  

I follow your story and think of you often. No matter what is going on with your own treatment, you always have an encouraging word for all of the other women on this site and share helpful information whenever possible. I have great admiration for you and wish you the very best treatment outcome.

With warm regards,

Jill

NoTimeForCancer said:

Jill, it is important for all

Jill, it is important for all of us to hear you are doing well after dx and treatment of UPSC.  Thank you for checking in and letting us know.

It's so good to hear from you and learn that you continue to  be with NED.  Thanks for the dose of hope.

I just found this line and it looks like there are about 35 who have responded.  I was diagnosed almost exactaly 3 years ago via an annual pap.  The only symptom I had was bloating, but I didn't know it was a symptom at the time.  My surgery was in November 2011 at the University of Pennsylvania.  I was 64.  My pathology report indicated multiple organs and sites; uterus, both tubes, both ovaries, omentum, peritoneum and appendix.  90% serous 10% clear cell. Lymph-vascular invasion is listed as "suspicious".  Stage IVB.

After my first round of 6 taxol/carboplatin I was on megestrol for 9 months when my CA125 jumped from 49 to 349.  I did a second round of 6 with the same chemo cocktail followed by tamoxifen for 5 months when my CA125 jumped from 32 to 122.  My most recent [round 3] chemo, again the same cocktail ended in May and I'm now taking letrozol and am on a 2 month lab schedule and get my port flushed too.  I'm hoping the numbers stay good at least until the first of the year.  I'm now considered platinum resistant and my oncologist has mentioned Doxil.

My hair is growing back again and styling involves a washcloth and fingers.  My oncologist and a number of friends tell me it is quite stylish.  I usually feel pretty good, but tend to tire easily.  That could be because I'm out of shape.  I'm working on a walking regimen.  While sometimes it's hard not to worry, we all know worrying doesn't do any good.  So, I've turned the worrying over to God.  It really helps.  If anyone is interested, I've found 2 books that have helped me to think positively about my future, even if my future is not of this world.

God bless all of you, Maggie  

Maggie_mac said:

UPSC Roll Call

I just found this line and it looks like there are about 35 who have responded.  I was diagnosed almost exactaly 3 years ago via an annual pap.  The only symptom I had was bloating, but I didn't know it was a symptom at the time.  My surgery was in November 2011 at the University of Pennsylvania.  I was 64.  My pathology report indicated multiple organs and sites; uterus, both tubes, both ovaries, omentum, peritoneum and appendix.  90% serous 10% clear cell. Lymph-vascular invasion is listed as "suspicious".  Stage IVB.

After my first round of 6 taxol/carboplatin I was on megestrol for 9 months when my CA125 jumped from 49 to 349.  I did a second round of 6 with the same chemo cocktail followed by tamoxifen for 5 months when my CA125 jumped from 32 to 122.  My most recent [round 3] chemo, again the same cocktail ended in May and I'm now taking letrozol and am on a 2 month lab schedule and get my port flushed too.  I'm hoping the numbers stay good at least until the first of the year.  I'm now considered platinum resistant and my oncologist has mentioned Doxil.

My hair is growing back again and styling involves a washcloth and fingers.  My oncologist and a number of friends tell me it is quite stylish.  I usually feel pretty good, but tend to tire easily.  That could be because I'm out of shape.  I'm working on a walking regimen.  While sometimes it's hard not to worry, we all know worrying doesn't do any good.  So, I've turned the worrying over to God.  It really helps.  If anyone is interested, I've found 2 books that have helped me to think positively about my future, even if my future is not of this world.

God bless all of you, Maggie  

 

Welcome Maggie! I am interested in the books that you mentioned.  Although I'm Stage 1a, I still think about my future and unnecessarily worry about it.  I go to my doctor next Tue to get the report on my first CT scan since finishing my twelve infusions last month.

I know this is short but I wanted to let you know that your post is encouraging to me.This is a battle that we can't fight alone.

In Him,

Donna

I was diagnosed in 2011 at age 63.  My symptoms were spotting that I had been having off and on for at least 7-8 years but biopsy was always negative.  This time it was positive for UPSC. I was staged 3A/Grade4.  I had a radical hysterectomy and did 6 Carboplatin/Taxol treatments.  After reading about the side effects of internal radiation I declined it.  I have been NED for 3 1/2 years but have been spotting off and on now for about a month and this concerns me as I had positive abdominal wash at the time of surgery.  I feel "crampy" and have a low backache, almost as if I was going to have a period.  I will see my gyn/oncologist in 17 days.  My gyn/oncologist does not do CA-125 on me anymore.  I haven't had one since right after my last chemo treatment in 2011, at the time CA125 was 4 which is great! Wondering does anyone else experience spotting? I had been told before that it was due to the thinning of my vaginal walls but it's been going on a bit longer this time.

deanna14 said:

Diagnosed September 2008 at

Diagnosed September 2008 at 39 years old with Stage IIIC mixed serous papillary and endometriod. 25 external pelvic rad, 3 brachy rad, 6 Taxol\Carbo chemo. I am still NED.

Hi, I had my surgery, radical hysterectomy Nov 2012. Was UPSC but was given an unclear primary as there was a spot on an ovary.. Luckily as it meant I ticked the right boxes for the chemo treatment. 6 rounds of carbo/taxal, then 3 brachy. So far so good. Still dealing with nerve damage from surgery though. I'm in Australia

ConnieSW said:

Welcome aboard, trinoz

Glad you found us and that you are doing well.

I haven't checked in here since last October 8, well before my surgery on October 23, but things have progressed along usual lines since then EXCEPT that I got the great news that my UPSC was confined to a uterine polyp, giving me a Stage 1A, Grade 3. My gyn/oncologist felt some chemo was still warranted so I have now finished three rounds of carbo/taxol and feel quite confident in my future which not long ago seemed quite uncertain. Although life is always full of uncertainty, isn't it! I continue to read all I can find on this disease and will continue to have the usual followup surveillance. I go in for a new baseline CT scan in a couple weeks.

Delia1969 said:

Brand newbie UPSC age 45

Hi,

this is my first post.

I learned I had UPSC 2 weeks ago, & am 5 days into recovery from my hysterectomy. will get pathology report in 2 days.

based on what he knows pre-report, my GYN oncologist, who performed the surgery, believes it's Stage1. But he says stages don't make a big difference, he called UPSC a "nasty" cancer, & said he won't recommend radiation OR chemo because he considers them worthless against future growth. He wants to do obvs only, every 3 months.

i will be getting at least one second opinion on post-surgery path options. Any doctor recommendations in LA? 

I look forward to reading stories of all your struggles & little victories, & sharing mine.

Details about me: I'm 45, never been pregnant, extremely athletic. I believe my cancer is a result of polypectomy 10 years ago (but of course that's just speculation).

xDelia

So sorry you joined the club but happy that you found this group.  These women give me so much enouragement!  I live in the San Fernando Valley and am treated at the Leavey Cancer Center in Northridge.  My lead doctor there is Dr. Juan Alcantarr or any of his partners.  Their practice is ranked in the top 100 nationally. The team is affiliated with UCLA.  You definitely want a second opinion.  You will find that almost all of us have been treated aggressively with chemo and radiation (in many cases).  I got a second opinion at the City of Hope in Pasadena Dr. Christina Yeon, my initial diagnosis was from Dr. W. Michael Lin (gyno onc surgeon) who joined City of Hope in the last year.  Dr.  Robert  Morgan  at the Duarte campus  is one of the top gyno oncologists in the field nationally.  UCLA or Cedars are highly recommended too.  i will dig out the name of the doctor at UCLA who is consulting on my case too.  

In April 2013 I was diagnosed Stage IIIC, second opinion said Stage IVa because of the para aortic involvement and distance from the tumors.  Either way the treatment regime didn't change.  I had a softball sized tumor in my uterus, 81 percent uterine involvement, a walnut sized tumor on my right ovary, cancer in my cervix and three lymph nodes.  All pelvic lymph nodes were removed along with TAH and omentum.  

Hang tough and fight hard.  Stay strong.