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anyone with upsc stage 3/4 NOT had a recurrence

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sisters,

since i think stage is the definitive aspect of whether we have a recurrence or not, i'd be extremely interested to know if anyone has been diagnosed with either stage 3 or 4 upsc who has not had a recurrence. hopefully, there are some of you out there. unfortunately, on this site it seems that many if not most of stage 3 o 4 upsc have had a recurrence.

sisterhood,
maggie

sleem
Posts: 92
Joined: Feb 2010

I know that both stage and grade have a role in this question. It seems that each stage has stats...stats are not always able to be generalized...so I can't discuss that part of our likely hood for a return... as I'm not clear or sure of that to speak... I know when and/or if does..we all a another fight...even harder & new ideas are available..I read about people beating again

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Hi Maggie,
I have been hesitant to reply to your question, mainly because I felt like I might be jinxing myself :o), but I was diagnosed with high grade UPSC stage IIIC and finished my treatment in 08/09 and so far so good. I had my last checkup w/ CTs last month and my doc said everything looked clean. My CA125 was 9.5, but it has never been above 15 even before my surgery. Of course I haven't even hit my 2 year mark since ending treatment, but it seems like, from what I have read, most people have recurred by this time. So maybe I'll get lucky!

I'll bet there are others who are like me, afraid to step forward...yet.
Hope I'm not jumping the gun,
Laura

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

You're not jinxing...just cautious. Does your doc say he can follow the CA 125 fully? Mine can as it was 500 pre-cancer and kept moving down until after treatments and today staying at 4 to 5. I don't have CT scans unless have symptoms or blood work with CA 125 isn't good.

I don't have UPSC but another aggressive cancer MMMT. I think so much of this recurrence can be attributed to how we take care of ourselves with eating, exercising, etc. Plus do we have other health issues to complicate beating cancer. Many variables.

Congrats on NED. I completed treatments July '09 and been NED since, so we're dancing the high life.

Best to everyone and keep the positive vibes going!
Jan

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Hi Jan,
I think my doc just follows the ca125 because that's standard of care at my hospital. On my next appointment I'm going to ask about any other possible markers we might follow such as the HE4? marker.
Congrats to you too on being NED.
Thanks for the good vibes!

Laura

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

so good to hear that you were stage 3 and no recurrence. may it ever be so. i have been on a strict anti-cancer diet for 10 months,--no sugar, white flour, dairy, hardly any meat, a little chicken, everything organic, lots of fruits and vegetables, exercise every day, vitamins, high dose vitamin d3, etc., and still i recurred. so, it's not just how we take care of ourselves after surgery, chemo, etc. that determines whether we have a recurrence or not. i still think it's a crap shoot.

i recurred a little over a year, which was considered good, so if you're at a year and a half, i think you have a great chance of being done with upsc. here's hoping.

sisterhood,
maggie

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Hi Maggie,
You're right! It is a crap shoot. I'm going to enjoy my life while I'm here. I try to eat a balanced diet and I exercise daily because I feel better when I do, and try to reduce my stress, but that's about it. I have a sister-in-law who died of breast cancer and she spent the last days of her life with people trying to force-feed her cottage cheese and flax seed oil. I don't think that's for me. Vitamin D3 is a good thing though, I think one of the most important really. We don't get enough.

Keep your spirits up Maggie!
Best wishes,
Laura

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Maggie, I haven't had a recurrence. I am 3 years NED this month. I was diagnosed Stage 3C UPSC. Hope this is hopeful.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

mazel tov! on three years ned. that you were stage 3 and 3 years ned is extremely hopeful. may it always be so. thank you so much for responding. have you done any alternative treatments, changed your diet, exercised? or is it more the luck of the draw? in any case, all that matters is that you're ned!

sisterhood,
maggie

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Thanks Maggie. I don't know. Of course, I am very very luck. Mostly just that. I've posted here before about my lifestyle and medical choices. I'll be glad to post again if it would be helpful. I have been travelling for several days and will have access to a computer again tomorrow. Everyone here deserves a better answer than I have time to give right now but I will check in tomorrow. I have to go out right now. Sorry.
sisterhood, Barb

maryv1119
Posts: 37
Joined: Jun 2011

This is great to hear. I'm 3C grade 3 and have my 3 month check up in October and I'm nervous and very hopeful.

Cindy Bear
Posts: 570
Joined: Jul 2009

Hi Maggie. I totally agree, it's a crap shoot. I just wanted to comment, I just saw a woman over on inspire.com (ovarian not uterine) who was diag. stage IV in 1996 and no recurrence to date!!!

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I agree as well, but I'm the type that just has to do something to try and keep my body built up. That's where the food, exercise, etc, comes into play. Really the only control I have, as cancer will do what it wants, when it wants.

Life is a crap shoot really, so just try and live each day, as if it were your last. AND...smile :-)

Enjoy the day ladies,
Jan

JoAnnDK
Posts: 275
Joined: Jun 2011

Maggie, you wrote, back in March " i have been on a strict anti-cancer diet for 10 months,--no sugar, white flour, dairy, hardly any meat, a little chicken, everything organic, lots of fruits and vegetables, exercise every day, vitamins, high dose vitamin d3, etc., and still i recurred. so, it's not just how we take care of ourselves after surgery, chemo, etc. that determines whether we have a recurrence or not. i still think it's a crap shoot."

I could not agree more. I think being on a strict diet can be stressful, which we do not need. Thinking that we can control this evil (with a diet or anything else) can also be stressful because if there is recurrence, we think WE have done something wrong, or not enough, or whatever.

The anti-cancer diet might be great for everyone BEFORE getting cancer, but once that evil is in your body, it is just hiding out, waiting to spring again. And I do not think a diet will stop that.

mehulelx
Posts: 1
Joined: Jul 2011

My mother had a Malignant Mixed Mullerian Tumor detected in CT Scan. She was operated but that time it was not confirmed whether it was malignant. Hence no lymph nodes etc were removed. But later in Histopath report, same was found to be malignant. PET scan shows some metastases in the Pelvic. Now there are 2 opinions of 2 different doctors.

One is give 3 Chemo treatment, then one surgery to remove residual metastases. Then again 3 Chemo treatment. This is done to dissolve the Tumor in first 3 Chemo cycles and then Surgery can be made easy.

Second doctor says remove the Tumor in Surgery first and then take Chemo cycles. SO that if 3 chemo do not respond to tumor, then it will spread. Hence first surgery and then Chemo.

Anyone has any experience in this. Pls help.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I have this same type of aggressive cancer. Mine was prior to surgery (total hysterectomy) only found in uterus. After hysterectomy found in 1 lymph node - pelvic. Doc told me we used to do chemo prior to surgery, but now they suggest surgery-hysterectomy (total), chemo and in some instances radiation. I had it all and today NED for 2 years, stage 3C.

I know if you look into some earlier posts, I think Claudia posted about suggested treatments according to the medical outlines for cancer. But...that doesn't mean every doc follows this to the "t" as many of us have other health issues, which don't allow themto follow the outlines.

If you ever don't feel comfortable with what your doc suggests, alway get a second opinion. Most insurance companies will pay for these, too.

Surely a few others will chime in for suggestions or advice...

Best to you and keep coming back, as you'll learn so much from others.
Jan

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

Diagnosed UPSC stage 3 A. Finished treatment August 2008. Last checkup 1 month ago, everything clear.

There is hope for us all.
Maylynne

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Maylynne....I was so happy to hear about how long you have been diagnosed with a difficult diagnosis/stage and you are NED today. That is so hopeful to so many many on this site.

What type of treatment did you have and is there anything you are doing to stay NED?

Best wishes to you always.

Karen

P.S...I love your water lilies!

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

I had the standard treatment for an agggresive tumour, radical surgery, Chemo, radiation and brachytherapy.

I have not been on any special diet, just the same as before. I try not to dwell on it, and spend a lot of my time travelling, and gardening when I am at home.

Good luck to you Karen, and thank you for writing.
Maylynne

sleem
Posts: 92
Joined: Feb 2010

I agree with all the comments. I try not worry if what I'm eating or not anymore will or will not stop this ugly USPC. I am fortunate to have been 1A grade 3 with no other signs after staging in any places. At this time I'm NED. Yet, my CA 125 is still in normal 'range' but rising. But, I am blessed to be NED as I write this. It might not make sense, but I worry the same as if I wasn't in NED. I have not found anyone with USPC who has not had it come back sometime in the future. So, we all seem to share the same feelings & worries at any stage. So, I continue to hope & pray that there are researchers, etc. that will continue to work on this USPC to help us all fight at any stage we are facing. You ladies keep me focused, hopeful, and filled with knowledge & support.

I can not say it enough that I am lucky to have the opportunity to learn from each of you.

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

I was diagnosed with UPSC, Stage 3A, Grade 1. I go for my 1-1/2 yr ckup on Monday. Feeling good and I know I am very blessed to be here. This is a wonderful support group. I don't post often but thoughts & prayers are with you all.

cindynimmo
Posts: 2
Joined: Jul 2011

only 2 years out though...and still quite a bit of trepidation!

3C....

jmullen16
Posts: 8
Joined: Jan 2009

Hello,

My partner was diagnosed with stge 3C uterine cancer three years ago. She will have her 3 year post- treatment doctor visit and scan August 8th. It was a long and hard ride! But, we are actually to the point in our lives where we lay down at night and realize we did not think about cancer all day! In some ways I feel guilty because it dominated our life for so long. But, the bottom line is no one knows how much time they have. I rolled my car and almost died. 2 months later Claire was diagnosed with late stage cancer! It is possible to move forward and enjoy the time we are giving no matter how long that might be! I look at it this way... If the cancer recurres we have an idea about the time we might have. A lot of people live like they will be around forever then they are gone. They never had a chance to enjoy living! We don't take if for granted. That is the only good thing about this monster!

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