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5 Years cancer free today

Michaelynn
Posts: 83
Joined: Apr 2010

Just had my 5 year checkup for USPC and I am officially 5 years cancer free as of today. And my CA 125  which had stabilized after my surgery at 7 has now gone down to 5.1 The doctor said he doesn't often see it go lower  after 5 years. So that is also good news. I had him look in one of my ears as dead skin (like you would see peeling off a sunburn) has been coming out of my ear and he said it was do to the chemo (carbo/taxil)it is a side effect and causes skin to shed so I may have this forever or it might just go away someday. 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Five years UPSC free! Quite a milestone. Congratulations! I just had my initial surgery last October for uterine UPSC, so I am hopeful I will have the same result as you as time moves on. Your ear situation is unusual, at least I've not heard of that before. I have a bit of neuropathy in my fingers and toes, but am hoping it will improve. Best wishes for your ongoing good health!

nempark
Posts: 683
Joined: Apr 2010

Before you know it you will be telling us the same thing.  Hope you are feeling better.

nempark
Posts: 683
Joined: Apr 2010

Many more cancer free years.  I think medicine has come a long way. Be well.

pinky104
Posts: 574
Joined: Feb 2013

Congratulations on the wonderful news.  I'm just a little behind you (my surgery was in May, 2010).  I'm curious to know what stage you were found to be.  I was IVb, and I haven't found anyone posting recently who's been cancer free as long as I have (although I'm sure there must be some).  My CA-125's have been in the low 7's since diagnosis, with the exception of the two previous visits prior to my last one.  I was 6.3, then 6.4, and then I returned back to the 7's again. 

Keep up the good work.  Have you changed your lifestyle at all since cancer?

 

 

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

This is wonderful news, Michaelynn.  What is your protocol for follow-up now? 

I have a good friend who had UPSC Stage 2.  She is NINE years NED but still has CA-125 and exam every 6 months.  Her insurance kicked her back from gyn oncologist to local gynecologist, but she's very savvy and so is her gynecologist and the appropriate lab work is being done. 

Curious about your future follow-up and whether your insurance will force your to follow standard endometrial cancer protocol and return to gynecology.

Inquiring minds . . .

Suzanne

Michaelynn
Posts: 83
Joined: Apr 2010

No I will still see the oncologist for as long as they decide its the right thing to do. My insurance does not dispute that. I was stage 1A when diagnosed with cancer % of the way through the uterine wall. I had been spotting and bleeding for 2 years prior to my 2010 surgery so I was very surprised that my stage was 1A. Obviously the cancer had to be there before the spotting started (which happened when I went in for my annual pap test). Had ultrasound right away in 2008 and my primary physician said it was a polp causing the spotting (my gynocologist had just retired). I also had endrometrial cancer as well as USPC when I was diagnosed. When they scraped the uterine wall the mess that came out had then scheduling me straight away for the surgery. But the MRI they did right before surgery was clean so they knew going in that it was just in the uterus. Maybe aggressive cancer grows slower in some people. I am 64 now and thank God that he has given me the last 5 years to see my small grandchildren come into this world. They are 7-6-5 and 2 this year. 

Diya
Posts: 93
Joined: Apr 2015

Many congratulations to you! And I hope you stay cancer free as long as you live! My prayers for all cancer sufferers including my mum who is stage 4 grade 3. I hope everyone manages to fight this terrible disease and beat it!

pinky104
Posts: 574
Joined: Feb 2013

Thanks for telling us your stage.  You bled for two years, and I didn't bleed until about two months before my surgery when I was found to be stage IVb.  I think I only bled then because my gynecologist had just put me on an estrogen cream for irritation I was getting from wearing a pessary (I had a mild cystocele (dropping of the bladder) and I used the pessary to hold the bladder up where it belongs). If I had bled earlier, I think my cancer would have been found much sooner.  I also was told I had a polyp at first diagnosis.  It turned out to have spread to both ovaries, the omentum, and the small intestine.  I had diarrhea every day before work, and my family doctor had told me years before that I had irritable bowel. Funny how it went away after my cancer surgery!

By the way, the endometrium is the lining of the uterus.  Therefore, endometrial cancer is cancer of the lining of the uterus.  Endometrial cancer is what 95% of uterine cancer patients have.  My paperwork on my UPSC refers to it as endometrial cancer, so that tells where the cancer is located, and also as an adenocarcinoma.   Adenocarcinoma is a term for a cancer of a mucus-secreting gland.  The lining of the uterus has mucus-secreting glands, but there are many other places in the body that also have mucus-secreting glands, like the lungs, pancreas, esophagus, colon, etc., so adencarcinomas aren't just specific to the uterus.   Anyway, back to the subject of the endometrium--- other types of uterine cancer besides UPSC can also be endometrial cancer if they start in the lining.  If the cancer goes deeper into the uterus, into the muscle and other tissues, it's called uterine sarcoma.  This is what makes up the other 5% of uterine cancer cases.

In summary, all uterine cancers are referred to as either endometrial cancer (95% of the cases) or sarcomas (5% of the cases).  These two categories have other divisions, such as UPSC and MMMT and the other more common forms of uterine cancers, which differentiate other characteristics of the cancers, such as how they spread and how aggressive they are. I didn't want you to think you were in remission from two different types of cancers because of the terms endometrial and UPSC. There's a good chance that you only had UPSC located in the endometrium.  It is possible to have two different types at once, but you would need to have had another type besides UPSC, such as clear cell, for that to be the case.  You'd have to check your records to see if there are any names of other types, or ask your doctor about that.

Hope I haven't confused you too much!!!       

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I'm so happy for you.  I just cleared 1 year NED.  UPSC IIIa diagnosed June, 2013, had surgery and 6 rounds of carbo/taxol that ended Jan. 2014.   I wish continued NED for years and years and years.

Jeanette

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Kaleena
Posts: 2064
Joined: Nov 2009

Snoopy Happy Dance.gif

artist49
Posts: 87
Joined: Oct 2011

I don't post often because I find it uncomfortable to keep

posting good news when so many are suffering. But I guess

it's important to give hope also.  My surgery was in September,

2010 and I was diagnosed  UPSC stage 4B  with cancer found

all over the pelvic area and in 40 lymph nodes.   An incredibly

frightening and hopeless   sounding diagnosis.  Still NED .

Wish the same for everyone suffering from this dread disease.

 

mmilbach
Posts: 3
Joined: Mar 2015

Artist49.

 

Congratuatlions on doing so well.  I wonder if you wouldn't mind posting what treatment regimen you followed and where it was done?

 

Any further information would be appreciated.

 

Congrats again.

Mike

artist49
Posts: 87
Joined: Oct 2011

Happy to share the info.  Everything was done at Sloan Kettering.

After the surgery I joined a clinical trial - carboplatin, ixabepilone,

and avastin once every three weeks for 6 sessions. Then I

continued with avastin for maintenance for  another 2 and a half

years (every three weeks).  Completely changed diet and

lifestyle -   organic veg, nuts, seeds, alittle fruit, small amounts

of  organic poultry and wild fish, wild rice, sweet potato.  Imp -

black raspberries, whole lemon, cranberries, turmeric, garlic.

Any further questions. just ask.

 

 

 

mmilbach
Posts: 3
Joined: Mar 2015

Thank you,

 

My Mom was diagnosed stage IIIC last May, went through chemo using carb/pla? and three months after completing chemo, CT scan shows 2 enlarged lymph nodes and raised CA-125, going for a PET scan tomorrow.

 

I am looking for options for her now.  I don't think her previous dr's treated this agressively enough the first time around, now it looks like we are tackling a recurrence.

 

Your experience is heartening :)

 

Appreciate your time and feedback.

 

Thanks

Mike

cheerful
Posts: 266
Joined: Apr 2011

Hi Michaelyn:

  Congratulations on reaching your 5 year mark of remaining cancer free from UPSC.  I am 4 years from being diagnosed with UPSC as of February 2011.  I am 63 going on 64 and was diagnosed at the age of 59.  I am also Stage 1.  So far I have remained with No evidence of disease for which I am very grateful and thankful.  So I have another year to go before I reach my 5 year mark.

 I did change my eating habits for the better and went through 6 rounds of chemo and taxol along with 3 brachytherapy treatments.  I had a lot of support from family and friends when I was diagnosed and it was a very scary and very frightening diagnosis.  I have remained with a positive attitude all along and am doing my best to eat a lot healthier.  One has to remain upbeat and strong.

  I have known and heard of a few women that have passed away from our disease which makes me very sad from the uterine board.  They were all so young.  My heart goes out to their families.  I just lost an acquaintance in January who was only 60 and she had stage 3 of UPSC and she was diagnosed later in 2011 so she lived a little beyond three years.  I also lost a friend to peritoneal cancer stage 4 in January of last year and she was my age 63.  I met her when I was going through my chemo treatments back in 2011 and we became friends.

  I know I feel very fortunate and lucky to still be alive after 4 years.  I credit big time my gyn and my oncologist with saving my life with the surgery and the chemo treatments.  I was given an 80 to 90% chance of survival with my stage.   I have cat scans done once a year along with my CA 125 is checked two times a year and the numbers have remained low with the CA 125 and my cat scans have shown No evidence of disease.  I am always nervous though when I see my oncologist 2x a year for a checkup. I don't take anything for granted and just hope for the best news.  So far, so good.

  Now you can go on with your life and enjoy it and enjoy your grandchildren.  

  My son will be turning 21 this summer and is in college.  He has been a big inspiration to me and he helped me to change my eating habits for the better as he himself lost 120 lbs. due to bicycling 45,000 miles over nearly the course of 6 years and has remained a cyclist plus he changed his eating habits also.  He basically lost all his weight in the first year of cycling.  He now weighs about 150 lbs and is 6 feet 2 inches tall.   I also lost weight when I went through chemo and I recently lost several pounds as well so I am feeling better that way.

  Good luck to you in the future and again, congratulations on reaching your 5 year mark!

Cheerful

a/k/a Jane

 

  

 

 

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Great achievement! I am inching to the five year mark since Dx in July 2010, but I have never been cancer free.
So I guess we each need to count our minute by minute successes differently.

Well done!
Sara

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

fantastic!!! keep those misestones coming to encourage others, I was reminded that I had not posted in a long time, I am also 5 years cancer free, happy dance ensues !!!

 

ConnieSW
Posts: 1576
Joined: Jun 2012

Good to hear from you.  Delighted for you that you are about to hit the 5 year mark.  You know, there should be some kind of memento for that like there are for wedding anniversaries.  Hmmmmm- got any ideas?

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Caradavin
Posts: 42
Joined: Jan 2010

Yay!!!  LaughingLaughingLaughing

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

So happy for you!  Wishing you many cancer free years ahead. - Helen

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