The Colon Club

Hi everybody,

I ran a search on the subject here and I got the feeling that most of you guys only do CT scans for monitoring purposes after chemo treatment completion.

As you can tell from my signature, I'm about 6 months out after my last chemo treatment. While my principal surgeon recommended only an MRI (he thinks I'm still young and don't want me to get too much radiation, he thinks the most probable recurrence spots are in the abdomen chunk anyway), my Onc recommended a PET scan (so that he can be sure it's totally clear what's there in the full body scan versus just abdomen chunk in MRI) in 2 weeks. So I'm sandwiched .

I'm a bit concerned about the amount of radiation of PET scan, but also concerned the limited area of MRI scan coverage. Any wisdom or experience to share here? My current CEA is 0.7 and I had my last PET scan 6 months ago, it was clear.

Thank you so much!!

p.s. I also wonder if anybody has this kind of experience before where your team of doctors do not have the same view on the same thing? What do you do usually?

In the last months since diagnosis, so it is about 8 months, I have had two MR, one PET and I think something like 8 CT scan. I think the main risk is an allergic reaction to the contrast, of course there is also the radiation, but it is very low compared to the radiation therapy I got for 5 weeks every day. It is a trade off, personally I would take that one PET and perhaps MR later. The PET can give more insights if you have a suspicious spot. The MR cover the same area but takes more time.

Claudia

I would choose the full body scan, regardless of the radiation risk. I want them to look everywhere.

I was monitored by both PET and CT every 2/3/4 months. When I had my lung recurrence I was monitored by PET only every 4 months. When ins cos started getting more nasty about PETs, we went to CTs only. CT scans are great, but without a simultaneous PET, I doubt my lung recurrence would have been detected. My 2 cents - it's not like CTs are without radiation risks.

These days you probably cannot get too many PETs (cost issues), but if your onc recommends one, I would sure go for it.

Take care,

JMO
.... strictly JMO BUTT this is what I have done and the logic I use to "direct" the docs into doing things my way

the MORE info you have, the better the chance you would find something in early stages and get it dealt with
"You WILL miss more for not looking than not knowing. "
SO
you started as Stage IV and your docs had better be looking very aggressively at
CHEST ABDOMEN and PELVIS

read my siggy topic to see how many CAP CTs I've had
I told the docs I would rather die from radiation than a cancer THEY MISSED 'cos they were not even looking !
Just me, I know BUTT it is MY life and I don't care if "they don't think it is important and wouldn't worry about it"

I have said this before : I once told a Doc I wouldn't worry either if HE was having the problem, when he said he wouldn't worry about it.
He was 1 of 2 docs I kicked to the curb when I had my recurrence.

Don't know who warned you about PET radiation issues ??????
you get more by walking around outside in the summer sun than you do from PET
>>>>>>> BUTT they almost always do a low resolution CT with the PET procedure for anatomical precision purposes ... THAT is where the added radiation comes in. Overall the newer CT machines are faster, better resolutions and less radiation

BUTT..... they can also do PET/MRIs which have the same "risk" as a plain PET and a plain MRI which is negligible
so if your doc wants an MRI ask for a PET/MRI ..... why not ????

..... where your team of doctors do not have the same view on the same thing? What do you do usually?

1. don't take radiology advice from a surgeon
2. don't take surgical advice from and oncologist
3. don't take oncology advice from a radiologist
4 ......... you get the idea

THEN I decide who is acting in MY best interest, instead of just a set of " that is the way we do it here " guidelines
and I advocate aggressively to get something which I feel is in MY best interest and not just their schedule or bottom line.

IF it was easy ... anybody could do it
CClubbers CAN do it 'cos we are a tough gnarly lot

Cheers and best wishes on the Journey
CRguy

CRguy wrote:
I once told a Doc I wouldn't worry either if HE was having the problem, when he said he wouldn't worry about it.

Wow CRguy, you say So many good things!
I will be saving this (also).
Thank you for being a moderator here

Cheers
CR

I told the docs I would rather die from radiation than a cancer THEY MISSED 'cos they were not even looking !

Thanks CRGuy!! Bless you for saying that.
I had a sleepless night thinking whether I should do a MRI or PET scan. I had PET scan scheduled with an unsettling heart, but now I feel very peaceful going in having that PET scan. THANK YOU SO MUCH!!!

1. don't take radiology advice from a surgeon
2. don't take surgical advice from and oncologist
3. don't take oncology advice from a radiologist
4 ......... you get the idea

We don't have a team approach when it comes to cancer at where I live. That means, we have to go locate our own surgeons/ radiologists/ oncologists and/or institutions we want to go, so sometimes the surgeons don't know the oncologists and they give conflicting advice.

Good that this forum is here !!!

betsydoglover wrote:I was monitored by both PET and CT every 2/3/4 months. When I had my lung recurrence I was monitored by PET only every 4 months. When ins cos started getting more nasty about PETs, we went to CTs only. CT scans are great, but without a simultaneous PET, I doubt my lung recurrence would have been detected. My 2 cents - it's not like CTs are without radiation risks.

These days you probably cannot get too many PETs (cost issues), but if your onc recommends one, I would sure go for it.

Take care,

It's absolutely good to know you had PET and CT that frequent and are fine now. I really would have avoided PET scan due to whatever stupid reason, but I have always had two lung nodules that have been there ever since my first PET. They don't have any SUV pick up and haven't grown/ shrunk with or without chemo. so without MRI only able to take image of 1/3 of my lung, which is not all that reassuring... I went with my onc's advice to do a PET. Thank you for sharing your experience, really meant a lot to me!

Fingers crossed on my PET scan!

Atoq wrote:In the last months since diagnosis, so it is about 8 months, I have had two MR, one PET and I think something like 8 CT scan. I think the main risk is an allergic reaction to the contrast, of course there is also the radiation, but it is very low compared to the radiation therapy I got for 5 weeks every day. It is a trade off, personally I would take that one PET and perhaps MR later. The PET can give more insights if you have a suspicious spot. The MR cover the same area but takes more time.

Claudia

Really interesting to compare radiation from a PET to radiation therapy. You are totally right, I haven't thought about that!!! Thx Claudia