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Scans..What ,When and Where? ..AKA if I could remember anything it would be nice..

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

Sometime ago, someone posted a great chart/table* about scan follow up based on initial staging or something or other...

What I am trying to figure out is this:

What type of scans Pet, Cat, MRI?
When Every 6 months?
Where Full Body, just neck?

My doctor only wants to do yearly CAT on my head and neck only.
In ALL other areas, he is MOST conservative. He said neck only because it will probably only come back there and if elsewhere I would be symptomatic.
I disagreed and said, besides the fact that I HATE the word probably, wouldn't it be better before I was symptomatic.....

Any info would be very appreciated...

* I hope it is a table/I love tables...
Thanks
Stacey

katenorwood
Posts: 1862
Joined: May 2012

Stacey,
In most cases I think the first two years are the most important with our follow up scans. I can't point you to any charts...I think you really need to impress upon your medical team how important this is to you. Make them give you the info you need. CT's and PETS are very hard on our bodies...MRI'S less so. I am so sick and tired of those darn machines myself...I tease the family that we really don't need Christmas lights just set me in a corner and turn off the lights. Hope someone else can be of more help. Warmest thoughts sent Stacey ! Katie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

There are at least four of us who currently are battling metastases from the neck to the lung: ToBeGolden, KateNorard, Denisit, and Luv4lacrosse. Hope I spelled these names correctly. To have 4 with lung involvement, out of the 2 dozen who post here regularly is a huge percentage.

My lung cancer was found with a combined PET/CT. The nodules were large enough that the PET would not have been needed. That is the lung nodules would have been spotted with a "simple CT". However, the PET did not light up anywhere else in the chest. So I guess this additional (good) information has some value. My lung cancer was confirmed with a biopsy. (My lung collapsed due to the biopsy (pneumothorax) and I got a day in the hospital.)

Now the REAL QUESTION to ask is what will be done in event cancer is found. For Dennis, it is a wait-and-see. For Kate, she is having surgery. For Luv, he found a clinical trial and his tumors have shrunk a bit. Very good news for LUV. And frankly, it is news that I did not expect. And it is news that gives me hope. For me (ToBeGolden), my oncologist suggested a wait-and-see. But I will be getting a second opinion. I am also adopting an ultra-healthy diet.

Let me say frankly, if it were not for Kate and Luv I would probably not be seeking a second opinion. So there you have it. Rick.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

There are at least four of us who currently are battling metastases from the neck to the lung: ToBeGolden, KateNorard, Denisit, and Luv4lacrosse. Hope I spelled these names correctly. To have 4 with lung involvement, out of the 2 dozen who post here regularly is a huge percentage.

My lung cancer was found with a combined PET/CT. The nodules were large enough that the PET would not have been needed. That is the lung nodules would have been spotted with a "simple CT". However, the PET did not light up anywhere else in the chest. So I guess this additional (good) information has some value. My lung cancer was confirmed with a biopsy. (My lung collapsed due to the biopsy (pneumothorax) and I got a day in the hospital.)

Now the REAL QUESTION to ask is what will be done in event cancer is found. For Dennis, it is a wait-and-see. For Kate, she is having surgery. For Luv, he found a clinical trial and his tumors have shrunk a bit. Very good news for LUV. And frankly, it is news that I did not expect. And it is news that gives me hope. For me (ToBeGolden), my oncologist suggested a wait-and-see. But I will be getting a second opinion. I am also adopting an ultra-healthy diet.

Let me say frankly, if it were not for Kate and Luv I would probably not be seeking a second opinion. So there you have it. Rick.

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Stacey,

From what I’ve read the experts are all over the place on recommended types scans and when. The closest information I found here was a response to DJG1 on 3/23/2011 by ratface where he gives a link to some information. Maybe we should PM ratface for info?

Off the subject some, I wanted to tell you I had my 18th birthday in Whitefish and spent a very fun week on the lake back in September of 1974, that’s all.

A very smart person on this site told me if you want a scan then ask for it.. I picked out my rad onc to ask (because I liked here the best) and said would you do me a favor and she responded anything you want. Wow, easy, just as I had been told.

Good luck with your scan and I hope you are feeling great.

Best,

Matt

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Hi you..., hope your goat is well....

I don't remember that table you mention.

As for me, for the last two, nearly three years I have been getting a PET, once a year and a CT once a year (six months apart).

Scans were every 3-4 months the first year....(I'm fast approaching the four year mark).

My scans are from the top of the head, down to and including the groin area.

Happy Holidays...

John

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

I got a 'baseline' MRI at two months post treatment. I got a PET-CT at three months post treatment. Then, I got a PET-CT at one year post treatment, but it was a very long hard fight to get my insurance company to allow it. My Stanford docs and my local ENT would like me to have a PET-CT at two years out (this month) but they all know that the insurance company is not going to allow it.

I have heard various reasons... "PET-CTs are not for monitoring" etc. (Given the battle royale I had, in order to get my first diagnostic PET-CT, apparently scans aren't for diagnosis either. SO WHAT ARE THEY FOR?) So, everyone is "settling" for a CT scan of my lungs, because I have lung nodules, and if I am going to have issues in future, they expect them to be lung mets. Stanford notes that my HPV+ BOT SCC stage 4 'almost never' recurs in the head/neck area. My local ENT notes that I have such a scrawny neck, he's going to be able to easily palpate any recurrence in the head/ neck. I am still waiting on the Insurance Company ok for the Chest CT. It's only been a week and a half since my doctor asked for it...

Deb

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

and we have the same Dr.'s. I had my PET the end of November which Goodman set up for me in August...he didn't say a peep about another one when I saw him on Dec. 3rd. I'm wondering if you go thru Dr. O, it might easier to get what you want. I'm going to ask him when I see him on the 17th. Ask him..."what now?". I sure as hell don't want to be symptomatic either by the time they might catch something.

p

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