5 Years cancer free today

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!

Hopeful162 said:

Five years UPSC free! Quite a

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!

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

pinky104 said:

Michaelynn

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?

 

 

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

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!!!       

artist49 said:

congratulations

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.

 

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

mmilbach said:

Artist49.
 
Congratuatlions

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

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.

Michaelynn said:

Future treatment

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. 

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!

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 !!!

Yay!!!