PET scan advice

[SandraL]

Hi all. As you can see from my history below I have recently had the coveted NED results after first line treatment. Those results were based on a CT scan. PET scans are not as commonly utilized in the province I live in as they seem to be for you folks in the US (so if you have more ready access to one you should feel blessed!). I have had one before, for radiation planning purposes, because my cancer was a bit of a mess with pleural effusion. I am grateful for that radiation planning because I know that was the big ticket item in my success to date. So I have asked my medical oncologist if I could have a PET scan and she agreed. She is a very smart pragmatic practical doctor whom I admire greatly. She seems to think it is the right thing to do.

What is nagging on my brain is some advice I got from a surgeon awhile back on whether or not to get a PET scan. I had asked him if that was more accurate than a CT scan which he agreed. But he also greatly cautioned me on why I would want to know any different results from what I have received. I have received other advice from him which I have questioned and I question this advice seriously. But it is still nagging at me. I have always been able to make tough decisions in life and work before, but boy this nasty C thing has sure wreaked havoc on my decision making when it comes to my health and what is the right thing to do generally. He said things like “why would you want to know” and “quality of life” and so on.

But I am thinking I would want to know. I want to know exactly what is going on and be able to deal with it. Of course I am assuming it is going to come back with positive results. But if there was something funny then I would want to know so we could get on as quickly as possible with what the heck to do about that. Right?

I am also currently participating in a clinical trial (the Stimuvax liposome vacinne one) and fought like heck to qualify for it. It has been going relatively smoothly so far. I sure wouldn’t want to mess that up…but if need be, I would want to get off it right, and move on to different treatment if necessary. Right?

I received the call from the clinic that has the PET scan machine to make an appointment. So now it is decision time. I have to travel across to the mainland for it, so it is a trip. But a trip also worth the benefit of a day off work, a weekend away, and some good shopping (IKEA here I come, I haven’t dropped any good cash in awhile!)

So anyhow, am looking for some words of wisdom from you good people. Do you think I have already convinced myself?? Thanks in advance for listening and for your advice and support

Sandra

[recce101]

Sandra, here is an article (with some discussion) by Dr. West at GRACE/OncTalk:

http://onctalk.com/bbPress/topic.php?id=994&replies=2#

and there are some others you might find of interest in the list starting here:

http://onctalk.com/bbPress/forum.php?id=21

Aloha,

Ned

[CaroleHammett]

Hi, Sandra.

Each of us has our own individual coping mechanisms; and I have been told (and read) that the majority of lung cancer patients don't want the "whole truth and nothing but the truth;" i.e., many prefer to just leave everything in the hands of their doctors (or family members, etc.).

I have found myself to be in the minority. I have a need to know everything about my condition and to research everything I learn.

To a great extent, I think this is a "control issue," but it also allows me to know my options and to set priorities for my life (a major one being to make sure that the time I "buy" with treatments is quality time).

Ultimately, there is no right or wrong way for all of us, but only the ways that work best for each of us individually.

I hope the above makes some kind of sense and wish you the very best.

Carole

[Patti B]

((Sandra))

Hey, girlfriend. I have to say, I am with you on this one. I need to know everything, whether it be good news or not (see, another thing we have in common). I figure its my life, I am the one who has to deal with it, so let me know!! And I also know that I would be asking for additional scans just to make sure. I am with Carole - I want to know the whole truth and nothing but!!!

It really bothers me that a doctor would ask you why would you want to know?? Duh - so it can be treated!! I know how hard you worked to get on that trial, and you know that I feel that anyone who goes on trials are my heroes because they are helping the rest of us, but bottom line is - if its NOT working, or not the best chemo for you - than you need to be on something else. As far as his remarks about quality of life - same thing - catch anything now (which I know there will be NOTHING to catch) rather than later which to me improves ones overall quality of life. What the heck is this guy thinking????

I feel bad that you are struggling with this. But I also know that you are one strong lady and that whatever decision you make, you will have made it after a lot of careful thought. Sometimes, you just gotta go with what your heart tells you to do!!!

You know I will be there for you. If you decide to go with the PET, I KNOW the results will be great. I should start saving my pennies now for all the White Zinf I will be buying you!!!

Hugs to you - Patti B.

P.S. A shopping spree, too!!! Good for you

[Barb73]

Sandra,

I have read and believe I understand what you are saying.

Because I am a caregiver, and not presently a lung cancer survivor, my reply is from that perspective.

Every step of the way, over these past three-plus years, I have wanted to know (as nearly as possible) what has been going on with Bill's cancer.

There has been no time that "not knowing" has been the preferred stance.

"Not knowing" is what got Bill into this stage of his cancer from the very start.

There was a lack of a CT scan given by his (then) pulmonologist early-on months prior to the eventual CT scan given at the request of our GP (family physician).

An early scan most probably would have given him a heads up on the lung cancer, and has remained in my mind as having contributed to the late-stage diagnosis.

Bill receives full-body PET/CT scans at intervals. They are not often, but have been utilized particularly when a regimen has been assessed for effectiveness, and for re-staging.

The scans are anxiety producing, but without them, we would be so "in the dark."

No scan is perfection. They are the best we have at the moment and can "guide."

However, everyone is different, and I respect an individual's personal preference on this subject.

Bill especially appreciates knowing what is going on as we go along - once burned, twice learned.

Wishing you the best,

Barbara

[StrahDawg]

This is just my 2 cents and as much as I hate to go. I would get the PET because the not knowing would eat at me worse and if I have to fight again I would want to know what I'm up against and everything out there possible to beat it. Best of luck with your decision.

[JustEA]

Sandra,

I too, am a big believer in "knowledge is power". Tell me everything, tell it to me now and don't sugarcoat it. I can't fix what I don't know is broken. Follow your heart and it will never let you down.

[SandraL]

Thank you all. You are articulate and wise! In my professional career I have no trouble operating with uncertainty and ambiguity and just charging ahead with confidence. This C thing is a bit more problematic...your good advice and the shopping have tipped the scale that was already heavily weighted one way. I have booked my appointment for next Friday.

Have a great weekend

Sandra

[nonni]

Hi Sandra...

I go along with most of the group...and I agree...'knowledge is power'...Tell me everything...I want to know...Glad you are getting the PET...It will tell you what is going on...Good Luck and be your own advocate...

hugs..nonni