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It's back!

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

After nine years, my cancer is back with a new tumor, hopefully isolated.  I'll be having surgery again at Sloan Kettering (Dr. Paty) probably followed by EPIC.  I really thought I was done.

Dam.

Alice

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

Apparently adult language is still blocked so I'll just say that you were one of the ones I thought were safe, Alice, and I'm sorry as heck that you have to revisit this crap again. Hoping for the best....................................Dave

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   My doctors have always warned me about new tumours springing up. My surgeons exact words were' ýou have beaten this tumour but your are in the zone now and you have to remain vigilant'. with 10 + scopes I have done that but I will always be at risk. I am sorry it has happened to you,,Ron.

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

what a xxxx!!! (add the most bad word you can imagine)

Thinking of you an sending a big hug from Germany
Petra

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

So sorry to hear this Abrub.  I have the same issue.  (New, not met).  Did surgical pretesting at MSK yesterday.

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

is next Friday.  When is your surgery?  Mine is the 27th.  Do you want to walk the halls together?

Alice

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

If you do meet, I want pictures. 

How neat would that make a not so neat experience. 

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

They may have gotten me in quicker actually.  Not a met, #3 primary in a year and a half.  I have always been an overachiever ;)  Barring complications and the rest, I should be out about 2 days before you come in.  Kind of bummed actually.  But if I am up for it, will come back in to hang with you.  Seriously.  You are in my thoughts as we both go forward...

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

but he's going away for a couple of days at the end of the prior week, and he wants to be there for me those first few days post op.  Who is your medical onc?  I've just been assigned to Dr. Reidy.

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I am so very sorry, Alice!   I fear the news of a new met, after so many years, is probably more of a blow than hearing it within months, when you really are still expecting the worse. 

I'm sure you've caught it early, and will get it all taken care of in no time. 

Keep us up to date on when your surgery is, so we can be sending all those good vibes and prayers. 

SUE

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Aw, I'm so very sorry that you're going to have to go through this crap again and go back to the every few months tests and all that bs. GD cancer. See, I've figured out a way to say what I feel without being edited. I pray they find a cure or less invasive treatments before I die. It's something I want to see in my lifetime. Best of luck. I hope it's an isolated incident and is easily fixed. Praying for you. For all of you.

Jan

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Unfair! Really thought you were in the clear.  Sounds like you have a good plan of attack doing what worked last time.  Good luck Alice.  Traci

Cathleen Mary
Posts: 827
Joined: May 2011

So sorry, Alice.  Hopefully, all will soon be well. Sounds like you have a good doc and a good plan.  You are in my heart and prayer.

CM

jen2012
Posts: 1607
Joined: Aug 2012

Ugh my stomach just dropped reading this.  I am so sorry.  I hope there is an easy fix.

Grrrrrr!

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Alice I am so so very sorry to hear this news. That is heart-breaking.  A lot of the long-timers here will understand that feeling of gradually sneaking away from the beast only to feel it again.....nine years......not fair Alice!!

mags

John23's picture
John23
Posts: 2140
Joined: Jan 2007

UGH.

We had the same time-frame - -  9 years to a recurrence. PHOOOOOOOO --OOO--- OOIE....!

Ok, so we'll do it again, alright? Here's lookin' at another 9 years for us!

(Hold my hand? I feel better not having to do this alone)

Be well Alice!

John

 

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

Holding hands.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I don't check in that much any more, and to pop on and find this news...I'm just stunned.  I'm so sorry you have to face this again.

I really hope it will be a quick surgery and then done for good.  Keep us posted.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

how did they catch it?  Symptoms or scans?

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

No symptoms. My dr was just saying "one more clean scan and we'll throw you out for good."  Didn't quite reach that point.  Now I'll never be thrown out for good.

Alice

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I think I would rather keep on having the scans than be thrown out and then have it come back. 

We grumble about all of the radiation and such running through our bodies, but the alternative is very scary. 

I am so glad they found the little beastie now.  

SUE

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

Scans for life now.  (Better be lots and lots more annual scans!)

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and ask about this.  I haven't had any scans for a couple of years, and I know he doesn't want me to keep having PETs (the only kind that worked for me), but...this freaks me out, tbh.  My cancer was an odd fast-growing type, but you just never know with cancer.  It seems to be able to do just about anything.

Keep us posted about your surgery, will be thinking of you.

 

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

I only had one PET scan, and that was at the request of an oncologist who didn't know Appendix cancer.  Since then, it's always been CTs, until a couple of years ago when we switched to MRIs to avoid radiation.  I had an MRI this time, and my dr told me that because I have a soft mucinous tumor, it actually shows better on an MRI.  That being said, he is sending me for a CT next week.

Of note, mine is a very slow growing tumor.  Dr. Paty thinks that the new tumor has been growing from a rogue cell that was left behind 9 years ago.

But with my new history, I don't see them ever discontinuing my scans.  I've been on 18 month scans for about 4 1/2 years.  I'm sure the frequency will now be bumped up, at least for a few years.  All very frustrating, but at least the prognosis looks good.  I'll keep everyone posted.  Dr's appointments and CT scan this Thursday and Friday (and next Friday).  Too many drs!

Alice

ellend
Posts: 95
Joined: Apr 2016

I think many people have said this, but this disease sucks. I'm sorry you are facing this after 9 years. Wishing you the best with surgery.

Guess it just goes to show that we need to continue to be vigilant.Ellen

marbleotis's picture
marbleotis
Posts: 706
Joined: Mar 2012

Alice,

I am soooooooo sorry.  When I saw this I thought oh-s$$t.  My heart and prayers go out to you.  I send you good thoughts and extra energy.

And yes, cancer really sucks!

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Holy crap!!!!!! I just decided to pop on for a day. No freaking way!  I'm sorry that just freaking stinks.  Get it out and get back to life.  Ugh I demand a recount!  

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I just popped in to see what's up. This is not what I wanted to read. Praying it is isolated and you are soon on another extended NED. 

Love and Light to you.

DD3's picture
DD3
Posts: 134
Joined: May 2013

that's &%$#@#!!!.  I just popped in and seen this.  I'm so sorry. Thoughts and prayers your way.

RetiredNellie
Posts: 14
Joined: Sep 2016

Alice,

I believe you have had your surgery and am just letting you know you have and will continue to be in my thoughts and prayers.  Take care.

sincerely, Sharon

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

This round of surgery (#4) is in 2 weeks.  Thank you.

danker
Posts: 1253
Joined: Apr 2012

After 6 yrs NED, I thought I was safe.  You are proof that we never are!!  Hope all goes well for you!!! Good luck!

RetiredNellie
Posts: 14
Joined: Sep 2016

Sorry I got the date wrong. but you will continue in my thoughts and prayers!

sincerely,

Sharon

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm so sorry to hear this! I hope they can zap it quickly.

Lin

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