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Turning in my Membership Card - It wasn't cancer! MEST

MeMeJoy
Posts: 70
Joined: Apr 2013

Hello everyone! First of all Thank You for everything! There isn't a group of people I'd rather be club members with than all of you. Fortunately though I must cancel (or at least downgrade)my membership and return my card ...Cool

 I went in today to have my staples removed (10 days post-op) and get the pathology report. Apparently, I never had cancer. Surprised

The mass was larger than they thought 10.4 cm X 9.6 cm x6.7 cm and therefore required a radical nephrectomy anyway. However, instead of being cancer it was a Mixed Epithelial and Stromal Tumor (MEST) of the kidney and showed no signs of malignancy.

From what I gather this is very rare, though I don't know what exactly 'rare' means, I've seen some things that say 50 cases reported in English literature and some stuff that says anywhere from 100 - 200 cases in international literature so....I gues eitherway those numbers are still pretty small.

I guess I really am a rare bird after all! lol

I still have to watch my other other kidney, maybe even more closley now since there are those 2 spots hanging out in there and this thing grew so big so fast. But, it wasn't cancer so there is no fear that it could have spread somewhere and is just waiting to show its ugly face!

I wish you all luck in your future endevours!!

I'm sure I'll be lurking around on this site for a while. I don't know if there is a site for MEST...

Thanks again!!

Texas_wedge's picture
Texas_wedge
Posts: 2799
Joined: Nov 2011

You pro bably won't need another site - just go away with our blessing and get on with enjoying your life without being under the shadow.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey MeMe, that is fantastic news!!! I am so, so pleased for you, so you can breath a big sigh of relief. As it turns out you are just very unique!!:)

 

All the very best 

 

Djinnie

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

memejoy that is wonderful news and i am so happy for you and i am sure everyone here will wish you the very best and lots of love...

eims xxxxxxxxx

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

You still have unique perspectives and a fine personality to share!  Don't you forget where we are! Wink

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

No need to turn in your card. We hadn't attached the bar code yet. Wonderful news! I smile as I type.

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

And membership hereby revoked. We would however like to keep you as a guest of honor :-)

/G

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

So glad to hear. No membership quotas here. In fact, we're all hoping new treatments will make the need for this site obsolete some day soon, but not there yet.    But it's great to hear one down. . .

 

Enjoy the new freedom with the diagnosis.

faithlou's picture
faithlou
Posts: 41
Joined: Jan 2013

Great news, best of luck!

BLKJAK
Posts: 108
Joined: Apr 2013

I gotta say I am jealous! I wish you continued good health.

MeMeJoy
Posts: 70
Joined: Apr 2013

Thank you for all your well wishes!

It's kinda strange but I feel as though I have a new lease on life, really I do! Thanks again for everything!

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Good luck to you MeMe!

All the best

Djinnie x

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Glad to hear it.  Love logging in here to good news.

 

All the best,

 

Todd

MeMeJoy
Posts: 70
Joined: Apr 2013

Thanks! I am ready to get off of the emotional roller coaster though!! lol I know this sounds odd but even when I got the news that it wasn't cancer it was emotional, I had just started to accept the fact that it was. And not knowing anything about MEST is hard too! There is no info out there! And I don't fit any of the "typical " cases.

Not that I would have it any other way!!! Don't get me wrong - Im not complaining!! Well I guess I am... lol.... but not about NOT having cancer, just about all the ups and downs the past month has brought!!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi MeMe,

It is good to see you, it was great news hearing that you do not have cancer, but I should think the news was both sweet and sour. It must be hard not being able to obtain a full understanding of your MEST diagnosis. As it is so rare I assume there is no specialist available, I hope you can find someone, somewhere to advise you though.

Are you are recovering well from your surgery, and managing to get some rest?

Try to keep your spirits up, and concentrate on all the things in your life that make you happy. It will naturally take a little while for your emotions settle down, you have, after all, had several shocks to the system. Remember you still have the support of all those on the site whenever you need it.

All the best

Djinnie x

pinkstar's picture
pinkstar
Posts: 53
Joined: Mar 2013

Congratulations MeMe!!! I can understand the bittersweet of this. It seems that you are already on top of it.

Donna

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