Follow up protocols

[Nik Colon]

You guys are scaring me with this signet ring stuff. I had mentioned it many times to pretty much every doctor i saw and none of them seemed particularly worried about this - i don't know why: either they are clueless or it'S not too bad. From what I understand, I do not have signet ring carcinoma but rather an adenocarcinom with a mixture of cells, from low grade to moderate to high (signet). Anyway, next week I will have another appointment with a new oncologist specialized in gastro and we'll see what she/he says.

My onc was only saying (I think) that more scans does not mean longer life. You might find the met sooner rather than later but that does not mean you are going to live longer...which I don't know if it's true or not.

I'll post updates soon.

I was not trying to scare you, just wanted to add the positive part to it. But, I would definitely get a clear understanding of it since they mentioned it but don't seem concerned. The wording you described "I do not have signet ring carcinoma but rather an adenocarcinom with a mixture of cells, from low grade to moderate to high (signet)" doesnt make much sense to me, but then again, I don't know much about it.

[Lydia666]

You guys are scaring me with this signet ring stuff. I had mentioned it many times to pretty much every doctor i saw and none of them seemed particularly worried about this - i don't know why: either they are clueless or it'S not too bad. From what I understand, I do not have signet ring carcinoma but rather an adenocarcinom with a mixture of cells, from low grade to moderate to high (signet). Anyway, next week I will have another appointment with a new oncologist specialized in gastro and we'll see what she/he says.

My onc was only saying (I think) that more scans does not mean longer life. You might find the met sooner rather than later but that does not mean you are going to live longer...which I don't know if it's true or not.

I'll post updates soon.

I was not trying to scare you, just wanted to add the positive part to it. But, I would definitely get a clear understanding of it since they mentioned it but don't seem concerned. The wording you described "I do not have signet ring carcinoma but rather an adenocarcinom with a mixture of cells, from low grade to moderate to high (signet)" doesnt make much sense to me, but then again, I don't know much about it.

I was told the differentiation of the cells means how close do they look to normal cells. If they are well differentiated, they are close to the normal type. Also, they said it is subjective - the pathologist decides what to call it, it is not a black and white science and you could have more than one type of a differentiation. When there is a signet ring carcinoma, it means more than 50% of cells are signet. Mine was adenocarcinoma with less than 50% signet. I don't know - can't wait to speak with yet a third oncologist and see what they know about this. The articles you guys posted pretty much mean a death sentence and a fast one !

[Nik Colon]

Please don't take it that way or think that. We just want you to make sure you double check with your doc to make sure about future scans and such is the correct time frame.

I have to get CT scans every 3 months, but next one in only 2 with Combo PET/CT! Because of small growth. Plus, I had a CT only 1 month prior to my last because of other problems. (That will be 3 CTs and PET in 4 months). I can't even remember how many I have had in a little over a year! I've had 2 MRIs, will be 2 PET and numerous CTs. So I'm kinda screwed when it comes to the radiation part. (and 1 or 2 xrays)

[Lydia666]

Please don't take it that way or think that. We just want you to make sure you double check with your doc to make sure about future scans and such is the correct time frame.

I have to get CT scans every 3 months, but next one in only 2 with Combo PET/CT! Because of small growth. Plus, I had a CT only 1 month prior to my last because of other problems. (That will be 3 CTs and PET in 4 months). I can't even remember how many I have had in a little over a year! I've had 2 MRIs, will be 2 PET and numerous CTs. So I'm kinda screwed when it comes to the radiation part. (and 1 or 2 xrays)

i know you mean well, Nik. No worries, but i get scared easily. Just when I think my life might get back to normal after this year of craziness, I get in that panicky mode again. I do know 3 people on here with signet who have been cancer free for years, so I will try to hold on to that.

[Nik Colon]

Please don't take it that way or think that. We just want you to make sure you double check with your doc to make sure about future scans and such is the correct time frame.

I have to get CT scans every 3 months, but next one in only 2 with Combo PET/CT! Because of small growth. Plus, I had a CT only 1 month prior to my last because of other problems. (That will be 3 CTs and PET in 4 months). I can't even remember how many I have had in a little over a year! I've had 2 MRIs, will be 2 PET and numerous CTs. So I'm kinda screwed when it comes to the radiation part. (and 1 or 2 xrays)

i know you mean well, Nik. No worries, but i get scared easily. Just when I think my life might get back to normal after this year of craziness, I get in that panicky mode again. I do know 3 people on here with signet who have been cancer free for years, so I will try to hold on to that.

Glad to hear, Best wishes

[juliej]

So what does your oncologist do?

WHATEVER I TELL HIM TO ….


Ok seriously … we kind of make it up as we go because I push him NOT to follow the guidelines as much as possible
BUTT he knows when I push something or reject something there is a lotta research and "experience"
aka ColonTalk !!!! behind my reasoning
SO we kind of get to middle ground on protocols.

He was the one who pushed for "pseudoadjuvant" chemo with my lung met … for curative intent back in fall 2009.
We were supposed to follow the BCCA guidelines for scans etc. BUTT I kept bugging him and the residents until they finally wanted to shut me up and we just did more than "standard"( i.e. Q 6 months instead of Q 12 months )

Now, 6 years after last chemo, I am on 6 month full bloods/CEA/CA19-9/ exam and annual CAP CT with IV contrast ….. until further notice……. which I fully expect to be given … this June

THEN … yet another Journey begins
… gotta train a new set of follow up docs !

So you're on 6 month labs/exam and annual CAP CT? At what year (post-chemo) did you switch from 6 month CTs to annual? I feel like we Stage IV NEDS are writing our own rule books!

Thanks!
JJ

[CRguy]

Ok found my spreadsheet !!!!

From last chemo :
CEA/bloods/exam/ CAP CT every 3 months for 1.5 years
then all above every 6 months for 2 years
then CEA/bloods/exam every 6 months and yearly CAP CT scans
( next one in June )


YUP ... kinda writing the lyrics as we go !!!!

Cheers JJ
CR