From : dr. thinks its another tumor... now what?

[Guest guest]

Hi Monika, Cliff, Joe, others, just wanted to thanks for always

returing my messages... Jim, my husband is still scheduled to get a

PET scan, but meeting with the oncologist, dr. thinks CEA levels

rising from 5 to 10 to 16 in a few weeks time is due to a tumor.

Just sooooo mad b/c Jim is almost done with chemo and we were

planning this big trip and celebration, I just can't believe someone

so healthy looking has to go through another surgery (after having

resection for Stage III back in April of this year!) I was so naive

to think this couldn't happen during chemo. The dr. does think its

still early, so hopefully its localized to the liver, etc. and can

be removed. ANyone have info for me here? We're just devastated

and I'm having a hard time not being a wreck in front of Jim. I

know we still need the PET scan, but the dr. says now its an 80%

chance of being a tumor (remember a couple of weeks ago, he said

there was only a 5% chance of getting a tumor during chemo!!) We

are scheduled for a 2nd opinion, but of course will do whatever it

takes these next few weeks. I will happily read Cliff's sites to

survivors stories, b/c I need some inspiration right about now!

Thanks to all who respond,

> Here are two sites that may be of help to those on this list.

> http://www.cancersurvivors.org/Support/emotional/stories2.htm . .

> http://www.dailycelebrations.com/cancerFIGHTERS.htm Feeling

pretty

> good and the liver mets are stable. I am totally computer

illiterate and

> could not find Just for Today ( # 6 -12 ) in the archieves which I

> posted quite a while ago. Could someone either send it to me or

post it

> to the group. The first part # 1 to # 5 is only part of the

picture.

> Wishing all of you great joy, health and enough. Take care and God

> bless. Cliff

[Guest guest]

,

Thanks for the nice words. I think that you guys are still in

a good position to beat this thing into submission - you still have

several levels of insulation to back into. Take it one step at a

time. From what I gather, the entire premise of another tumor is

based on CEA rises. Although your doctor is probably correct in

being concerned, CEA rise alone, especially of the magnitude that

you describe, is hardly icing on the cake. As we've discussed

within the forum before, treatments can often be associated with a

transient rise in CEA. If you want a link to a journal article

describing the effect, throw up another post and I'll dig it up.

If it is not transitory, I think it is also, like your doctor

suggests, very reasonable to think that it is confined to the

liver. Again not devestating news by default. Some studies report

surgical intervention of liver-only tumors, where the number of

tumors in small, approach 50% cure rates. And as long as it stays

that way (in the liver or in the liver with a little lung

involvement), 2d and 3d resections in the liver are routinely done

and themselves can be curative. Lots of fight left here, I think.

I would suggest a couple of things - first, don't do a PET Scan

alone, especially if it is positive - sometimes they can produce

false positives. I would ask that a concurrent CT Scan, or better

yet, if it is suspected in the liver, an MRI be done. If it turns

out that there is a tumor in the liver, the MRI will make getting

other opinions easier - I think most surgeons prefer to use these

over CT scans. It can also be used as a map of where the disease

was if the decision is made to do chemo for a while before

operating, and the disease regresses in the process. Secondly, if

liver surgery ends up being the answer, I would seek out and find a

surgeon who does a lot of them, like > 30 or 40 a year. Liver

surgery is more complicated than colon or rectum resections, and

experienced surgeons, from what I read, have hospital stays of 4-5

days vs. 12-15 days for those not so experienced. I have read that

guys/girls who specialize in liver transplants are the best ones to

get.

Hope this helps - best of luck - Joe

> > Here are two sites that may be of help to those on this list.

> >

http://www.cancersurvivors.org/Support/emotional/stories2.htm . .

> > http://www.dailycelebrations.com/cancerFIGHTERS.htm Feeling

> pretty

> > good and the liver mets are stable. I am totally computer

> illiterate and

> > could not find Just for Today ( # 6 -12 ) in the archieves which

I

> > posted quite a while ago. Could someone either send it to me or

> post it

> > to the group. The first part # 1 to # 5 is only part of the

> picture.

> > Wishing all of you great joy, health and enough. Take care and

God

> > bless. Cliff

[Guest guest]

Hi . I haven't been reading posts the last few

days...celebrating and just too darn busy but I want to thank you for

your kind words and it is our pleasure to respond. We all, to one

extent or another, know exactly what you are going through because

for most of us, especially caregivers, been there, done that.

I haven't got many words of wisdom to pass on to you at this poing

except to tell you that right after surgery, Bert was consistently at

0.9 CEA. It rose in January 2004 to 5.5 while still on chemo and

kept creeping up until 9.0 in July. Today, after consistently being

cancer free, it still hovers around 4.4 to 5.5...above what is

considered normal for non smokers, yet not normal for folks who show

no evidence of disease. At first, our doctor too thought it was

recurrence and all the necessary test were done

immediately...including an unscheduled colonoscopy. Nothing, I am so

happy to say. So don't count " all your chickens before they've

hatched. " Certainly the rise is CEA to Jim's levels is concerning

but wait to see the whole picture and if it is something, thank God

your oncologist is so on top of everything that you and Jim both

still stand in a good position to beat this thing.

Keep the faith.

Hugs,

Monika

> > Here are two sites that may be of help to those on this list.

> > http://www.cancersurvivors.org/Support/emotional/stories2.htm . .

> > http://www.dailycelebrations.com/cancerFIGHTERS.htm Feeling

> pretty

> > good and the liver mets are stable. I am totally computer

> illiterate and

> > could not find Just for Today ( # 6 -12 ) in the archieves which I

> > posted quite a while ago. Could someone either send it to me or

> post it

> > to the group. The first part # 1 to # 5 is only part of the

> picture.

> > Wishing all of you great joy, health and enough. Take care and God

> > bless. Cliff