Re: Uh oh....

[Guest guest]

> Anyway, I finally got a FAXed copy of the report and it doesn't look

> so good - at least 6 mets, maybe 7, only 2 of which are in the liver

> & therefore candidates for RFA (s---!).

Damn - , one has to wonder about the draw of the straws, seems to

be the best advice you can get is going to make the difference. That

and knowing you are " in charge " so they will be on their toes.

We got back from Columbus today, found out Dr. knows

Sugerbaker, and does this " belly washing " also. Bob will go thru these

cycles of chemo - then we go out to OSU for this mass removed in the

colon and that direct chemo. (as long as this chemo is working and his

fluid is not coming back. end Feb, March??)Will go back one time prior

when they have scheduled this Pet-scan for Bob.

How to they bring the temp. up inside the abdomen anyway?

Give me some of your Christmas Spirt, there is no snow here and I long

for some to feel Chirstmas-issy.

Warm Wishes and prayers, BB

ps. Haven't told doc #1 about visit to doc #2 and not planning to -

until all local treatments are done. Wonder if he will try to talk us

out of it? Sure feel better knowing a board certified colon cancer

surgen is going to do this than just that local general surgen.

[Guest guest]

> Anyway, I finally got a FAXed copy of the report and it doesn't look

> so good - at least 6 mets, maybe 7, only 2 of which are in the liver

> & therefore candidates for RFA (s---!).

Damn - , one has to wonder about the draw of the straws, seems to

be the best advice you can get is going to make the difference. That

and knowing you are " in charge " so they will be on their toes.

We got back from Columbus today, found out Dr. knows

Sugerbaker, and does this " belly washing " also. Bob will go thru these

cycles of chemo - then we go out to OSU for this mass removed in the

colon and that direct chemo. (as long as this chemo is working and his

fluid is not coming back. end Feb, March??)Will go back one time prior

when they have scheduled this Pet-scan for Bob.

How to they bring the temp. up inside the abdomen anyway?

Give me some of your Christmas Spirt, there is no snow here and I long

for some to feel Chirstmas-issy.

Warm Wishes and prayers, BB

ps. Haven't told doc #1 about visit to doc #2 and not planning to -

until all local treatments are done. Wonder if he will try to talk us

out of it? Sure feel better knowing a board certified colon cancer

surgen is going to do this than just that local general surgen.

[Guest guest]

,

I'm praying real hard for you.

Gurlstar

[Guest guest]

:

I am so sorry to hear that the news is not as positive as you (we)

would like. I think the good news is that they " are stumped

themselves " ! These doctors have no idea who they are up

against...you are such a formidable opponent to colon cancer!! Also,

as you said, " there is one possible way out " , which sounds pretty

likely. The other good news is that you sound great which certainly

has to mean something positive!! Don't get hung up on CEA. I am

convinced that even if it shows that it has increased, if you feel

well it does not mean that it cannot go back down.

Of course this is not the greatest time to get this kind of news, but

it is a great time to spend special moments with your family and

loved ones. Hopefully, this will help to distract you from thinking

about it. I will be anxious to hear what you think about the new

Lord of the Rings movie. I know that my kids will want to take me to

see it soon.

Hang in there and as you have heard me say a million times, " Carpe

diem! "

All the best,

Amie

[Guest guest]

,

You're a real inspiration, but I realize you human too, and must get

scared after a test like that. I had a bad visit with my onc many

months ago,for a different reason, and I let the negatives get me

down that day. That was tough. But I surrounded myself with

positive people who cared about me, and they helped me get back my

positive atitude...which has helped immensely.

Keep your chin up, buddy.

> I had a combination PET-CT scan last week - at the time of the

scan,

> I made them print out some of the images to take home. There

> appeared to be a few more things here and there a tad

> too " bright " for my liking...but I decided to wait for the formal

> report before concluding anything, while keeping in mind maybe this

> isn't going to turn out so great.

>

> I hear NOTHING from the docs...its been over a week, time to start

> calling up and asking why - even though I already know why,

> situations like this always mean they're stumped themselves! And I

> was unfortunately correct...

>

> Anyway, I finally got a FAXed copy of the report and it doesn't

look

> so good - at least 6 mets, maybe 7, only 2 of which are in the

liver

> & therefore candidates for RFA (s---!). They're all small, " under

1-

> 2 cm " according to the report, guess it could have been worse but

> still this is not a very good outcome. But I wasn't caught

unawares

> having already seen the pictures, so I'm not feeling all THAT

> terrible tonight (already been there last week, recovered now!).

>

> AM I GONNA GET OUTTA THIS ONE SOMEHOW? Well I've done it before

but

> ya never know, if I do manage to muddle through it will surely be

the

> tightest one yet...but there is one possible way out, which is...

>

> It had appeared to me from looking at the images that some of

> the " recurrent mets " are in the general area of the surgery - could

> they maybe be caused by incompletely healed tissue? And it is

> possible that one/both of the liver mets are the same ones which

were

> previously RFAd, maybe not completely " killed " by the heat? Doctor

I

> talked to was thinking similar things, but he doesn't have the

images

> I do as they weren't sent to him, just a FAXed unreadable copy. So

> he is going to have the pictures sent over to take a look and then

> maybe they can say more about what is and is not a met. Told me to

> get CEA drawn this week though...

>

> What is next? Why Christmastime of course! I'm also looking

forward

> to seeing the just released Lord of the Rings part II, supposed to

be

> even better than the first one! Cancer has to wait, nothin' I can

do

> about all this anyway in the next few weeks so I'm not gonna worry

> about it!!!

[Guest guest]

Don't forget about Holly Hairbands! www.hollyhats.net

>

>Reply-To: colon_cancer_support

>To: colon_cancer_support

>Subject: Re: Uh oh....

>Date: Thu, 19 Dec 2002 15:38:08 -0800 (PST)

>

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[Guest guest]

Thanks so much to everyone who wrote, your support means a lot to

me. I am feeling good, no pain anywhere and really no fatigue or

other " signs " of cancer. Good day today, went bowling with family

this afternoon (I won, yay!)

a wrote:

<<I was curious about the growth in the unhealed tissues.. what does

that mean exactly? My mom's PET showed activity in her original

inscion and it was never really explained to us why it happened there?

>>

Well, my surgery was at the end of Sept., only 2.5 months before the

scan was done. This surgery was pretty extensive, essentially

reopening the full incision from my prior liver resection (it is

HUGE!), cutting thru gobs of adhesions, resecting the liver again,

then resecting the small intestine and stomach. So they were really

mucking around in there, and when they do that it screws up scans,

especially CT scans which have a hard time in distinguishing between

scarring from the surgery and mets. PET shouldn't have these

problems as it picks up on metabolic activity, i.e. tissue which

is growing uses energy and uptakes the radioactive solution, thus

showing up as a brite spot on the picture. Normally you are not

supposed to have any " growing " tissue unless its cancer, but

obviously following surgery as extensive as I've described there is

going to be a LOT of growing stuff just from natural healing of all

that cutting. So the question becomes, how long does it take for

EVERYTHING to be " completely healed " with NO metabolic activity from

surgery healing to show on PET??? I'm not sure, but I think maybe

longer than 2.5 months!!! I sorta think the scan is a mixed bag -

not as bad as the report says but not great either. It probably

shows some " true mets " (which may have even been present at the time

of surgery. I had previously refused good scans because the surgeon

seemed to be looking for an excuse not to go ahead and I didn't want

ambiguous results to give him any!), along with some " incomplete

surgery healing spots " . ASSUMING this is correct, surgeon would

probably be willing to give it another shot next year, ablate the

liver mets and resect anything else. On the other hand if all the

glowing spots really are mets, my guess is he will say this is too

extensive and I will be headed somewhere else (maybe OSU, sounds good

from what others here report!) for a few more opinions!

Thanks again to all who wrote...am in the process of writing some

other posts about recurrence, " the talk " , etc., as is on the minds of

many here. Gotta go Xmas shopping tonite first thought LOL!

Best Wishes,

[Guest guest]

Oh Kaye, sorry to hear this - but you know I have heard of some

people going for months with elevated CEA and not a thing showing on

scans so hard to say what it means! If you MUST have elevated CEA,

much better I think to show nothing!

Hang in there friend,

Hugs,

> Hello , sorry to hear what is going on with you..I think you

and I need

> to have a trandum somewhere..this stuff is getting harder on our

minds and

> bodies everyday...

> I have as you might remember been going thru more test and they

still can't

> find any new cancer but the CEA I had drawn yestday is 15.0 that is

up again

> from 8.2 ..5 weeks ago...I have had pet scan,mri, ct. xrays etc.

suppose to

> have conference calls tomorrow with liver surgeon and

oncologist...looks

> like we are waiting for miracles..hugs to you..kaye

biggs.................

> hugs to all on this list....

>

[Guest guest]

Thank you Gurlstar...hope your brother is doing well!

Best Wishes,

> ,

> I'm praying real hard for you.

> Gurlstar

>

>

>

[Guest guest]

, I had liver resection april 18th..my surgeon said he wanted a

baseline MRI to show how the liver looked after completely growing back...he

did the baseline in oct...he said it took usually around that length of time

...It also showed spots on the liver which according to other test was still

bruising and bleeding specs from the surgery...MRI since then has showed

those to have gotten smaller and the PET SCAN shows no hot spots..the liver

was different in shape and size than original...as you know because of the

CEA rising they are looking in that area for regrowth..none to be found so

far...or anywhere else...hang in there...hugs,kaye

-- Re: Uh oh....

Thanks so much to everyone who wrote, your support means a lot to

me. I am feeling good, no pain anywhere and really no fatigue or

other " signs " of cancer. Good day today, went bowling with family

this afternoon (I won, yay!)

a wrote:

<<I was curious about the growth in the unhealed tissues.. what does

that mean exactly? My mom's PET showed activity in her original

inscion and it was never really explained to us why it happened there?

>>

Well, my surgery was at the end of Sept., only 2.5 months before the

scan was done. This surgery was pretty extensive, essentially

reopening the full incision from my prior liver resection (it is

HUGE!), cutting thru gobs of adhesions, resecting the liver again,

then resecting the small intestine and stomach. So they were really

mucking around in there, and when they do that it screws up scans,

especially CT scans which have a hard time in distinguishing between

scarring from the surgery and mets. PET shouldn't have these

problems as it picks up on metabolic activity, i.e. tissue which

is growing uses energy and uptakes the radioactive solution, thus

showing up as a brite spot on the picture. Normally you are not

supposed to have any " growing " tissue unless its cancer, but

obviously following surgery as extensive as I've described there is

going to be a LOT of growing stuff just from natural healing of all

that cutting. So the question becomes, how long does it take for

EVERYTHING to be " completely healed " with NO metabolic activity from

surgery healing to show on PET??? I'm not sure, but I think maybe

longer than 2.5 months!!! I sorta think the scan is a mixed bag -

not as bad as the report says but not great either. It probably

shows some " true mets " (which may have even been present at the time

of surgery. I had previously refused good scans because the surgeon

seemed to be looking for an excuse not to go ahead and I didn't want

ambiguous results to give him any!), along with some " incomplete

surgery healing spots " . ASSUMING this is correct, surgeon would

probably be willing to give it another shot next year, ablate the

liver mets and resect anything else. On the other hand if all the

glowing spots really are mets, my guess is he will say this is too

extensive and I will be headed somewhere else (maybe OSU, sounds good

from what others here report!) for a few more opinions!

Thanks again to all who wrote...am in the process of writing some

other posts about recurrence, " the talk " , etc., as is on the minds of

many here. Gotta go Xmas shopping tonite first thought LOL!

Best Wishes,