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Scan results 90% positive

Phil64's picture
Phil64
Posts: 389
Joined: Apr 2012

Well, I was really hoping for an "All Clear" but I guess it wasn't meant to be...

The MRI, CT Scan, and CEA level were clear (e.g. N.E.D.). My CEA continued to be under 1. But the PET scan shows uptake on the outside of the colon, near the rectom (spot where the original colon resection was done). The last two PET scans (1/15/13 and 3/21/13) also showed uptake in this same area. At that time the doctors were more concerned about the liver Mets and didn't worry much about the PET scan results.  They seemed to write it off as surgical healing. I also had a colonoscopy done this past March and it showed all clear; however, the uptake is on the outside of the colon so the colonoscopy would not have seen a tumor on the outside of the colon wall. 

The next step is to have an Endoscopic Ultrassonography (EUS) done on Thursday Oct. 31.  If the Ulttransound shows a growth they will also do a biopsy. 

If it turns out to be cancer I will require another surgery.  Also, given the location of the possible tumor I may end up requiring a coloscopy as well.

It doesn't seem like I have had any breaks during my battle with crc.  It's been one thing after another.  Just finished 12 rounds of FOLFIRI and Erbitux and I was so hoping for NED. I did deal with constapation, diareha, hemroids during the chemo as well, but these issues seemed to go away after the chemo was stopped.

I really am frustrated with cancer! And I feel like curling up in a ball and disappearing. The worst part of all this is telling my kids the results.

down in Detroit,

Phil

Blog: http://PScamihorn.me

 

 

jen2012
Posts: 1130
Joined: Aug 2012

We are sorta in the same boat..it does really suck and especially telling the kids. Fingers crossed and many prayers that its nothing. I have a serious respect for those who have been doing this for years. Feels like just when things may be looking up you get knocked down again.

Please keep us updated. Good luck!

annalexandria's picture
annalexandria
Posts: 2019
Joined: Oct 2011

and it truly sucks.  Going through the rigors of chemo, then finding out there may still be stuff to deal with is very depressing, and I'm sorry you have to go through this.  But I do think the title of your post is accurate..."90% positive".  Even if this new spot does turn out to be cancer, the fact that there is no further spread to other organs is huge.  You still have a good shot at a cure.  It took me 5 major surgeries to get to NED (I tried two chemos, but neither worked), and I've stayed there for almost two years.  Never know what the future might hold, but every little bit of extra time we get is precious, especially for the sake of our kids.

So I think when you tell your kids you should start with the same words you started with here...it's 90% positive! 

hugs coming your way~AA

UncleBuddy
Posts: 417
Joined: Aug 2013

I can't pretend to know how any of you feel. I know it breaks my heart knowing my brother's condition. All I can say is stay positive and keep fighting. 90% is still a good outcome.

Please, try to do something happy this weekend. Spend some quality time with your family. Try to take your mind to good places. :)

YoVita's picture
YoVita
Posts: 528
Joined: Mar 2010

but 90% is good news as AA said.  You've been through a lot, Phil.  I hope you get good news from the scope.

lp1964's picture
lp1964
Posts: 739
Joined: Jun 2013

As cancer patients we are used to take the better of the two bad. Even though you have a recurrence at least it's not a metastasis, because that's a real deal breaker. 

You mentioned that you may need colostomy, which is a bummer, but I'm here to tell you that two weeks after the surgery it's just a minor inconvenience in the big picture of things. We are here to get well under acceptable terms.

I would suggest that once you have the results get a couple of opinions about the surgery you need And tell the surgeons that you want no compromise. You want to have this tumor removed with clear margins I once and for all.

And if you haven't yet talk to your kids as soon as you can. On top of the recurrence this is a big burden to carry alone.

I wish you the strength and good luck to get through this and I know you will.

Laz

Lovekitties's picture
Lovekitties
Posts: 2825
Joined: Jan 2010

I know it is disheartening to not get the results you were wishing for.

I do have one question about your PET scans.  You say you have had 3 which showed uptake in this area.  Did they mention if there has also been an increase in the uptake?  It would seem that if it were a growing tumor that it would.

You are right to understand that it could be a recurrance, but don't count yourself down and out yet.  Wait for the definitive info from further testing.

You have already made it thru so much and I have to beleive that you can make it thru whatever this turns out to be.  If a colostomy is necessary, you can still live a very good life with relatively minor inconvenience with one.  I have had mine for about 3 1/2 years and it hasn't kept me from living the life I want.

Wishing you best outcome,

Marie who loves kitties

Phil64's picture
Phil64
Posts: 389
Joined: Apr 2012

Thank you for helping me to maintain a good perspective.  Marie, yest the PET scan did say increasing uptake.  I will focus on working this week and wait unti next Thursday's EUS test.  And if I'm facing another surgery I'll approach that with a better perspective thanks to you all!

God Bless you all and have a great day!

 

Phil

tanstaafl's picture
tanstaafl
Posts: 911
Joined: Oct 2010

We got my wife's pathology samples stained for CA19-9.  That being positive, with the initially elevated CEA, pretty much means to me lifelong cimetidine is beneficial to her mCRC status, helps prevent more metastases, and may help her immune system rub out a few more spots in conjunction with the other immune supplements.  We also monitor her CA19-9 blood levels.  Any surgery means more cimetidine.

The higher above 20-25 that CA199 goes, the more likely that cimetidine stain on a fixed tumor slide is positive.  A CA19-9 below 2 means long term cimetidine doesn't work.

 

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

Phil - I think ot's been 2 years now that I had similar PET showing uptake outside the colon and even a thickening of the colon wall.  I too had a colonoscopy, PET, and CT (no MRI or ultrasound).  It showed nothing definitive so we watched.  It eventually resolved itself.  Now I do have cancer near there, but not on the colon wall, so that could be what it was.  I would ask if the area appears thicker and if there is increased uptake.  

Good luck and congratulations on the 90%, that's good news.  Traci

Luckygirl2
Posts: 302
Joined: Mar 2012

I'm dealing with multiple cts and looking at possible biopsy in January .. I would like to stop worrying for awhile . Hoping things get better for you.

Deb

Annabelle41415's picture
Annabelle41415
Posts: 4106
Joined: Feb 2009

Sorry about the same area showing up once again but if it is located in just that area, surgery could take care of it.  If an ostomy can save your life, then you will welcome that.  It will just be a new normal for you.  Wishing you the best in your treatments ahead.  Where are you receiving your treatment at?  I've been going through Henry Ford.  Thank you for the update. 

Kim

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