PET Scan stories?

Diana_B · November 2007

My second-opinion doctor recommended I get a PET scan last summer, but I was afraid and didn't.

Now, I'm thinking of it, but my oncologist says that they can be hard to deal with because there are a lot of false positives and then you need biopsies etc. to check it out.

I tend to have a very active imagination, and I'm thinking false positives will be incredibly stressful. On the other hand, I'm still very worried and afraid and unconvinced that they got all the cancer, so a PET scan could be helpful in that regard.

Does anyone have any thoughts, stories of false positives or no false positives they can share?

I know I can't get you all to make the decision for me, but I figured a little investigation before I decided would hurt.

Thanks a lot,

Darya

Anonymous · November 2007

My oncologist only uses ct scans and bone scans because she doesn't think PET is proven technology yet. I'm not saying this is the truth, I'm just saying that is what my oncologist thinks. I've never had a PET scan even though I asked about it. By the way, I've had two oncologists now and neither one would order a PET.

NoH8 · November 2007

I had a false positive on mine once, it was stressful, but I'm not sorry I went through it, because I'd rather think something was there that wasn't than miss something that was, if that makes sense.

Anonymous · November 2007

I had one, PET/CT scan, before chemo. My onc said the radiologist pointed out something on my liver. Instead of biopsying my liver I had the scan. The scan proved to be nothing. Otherwise, my onc does not order any scans unless one has symptoms.

Shirley

Jellydonut · November 2007

If you decide to have a pet scan, take heed to this article:

http://www.snm.org/index.cfm?PageID=4936&RPID=627&Archive=1

Honestly, I wish I had known this before I had my pet scan.

Diana_B · November 2007

Thanks a lot for the feedback. Food for thought.

That exercise thing is particularly alarming, as it doesn't seem to take much to create an effect.

Patrish · December 2007

I had a pet scan last month, 2 yrs. after a 3a dx...it was actually ordered by my dermatologist who is very pro-active, because I had a melanoma in situ a few years before bc. my onc does not order regular scans, altho I could probably talk her into one if I needed the peace of mind. I thought I wasn't worried, but cried when I got the clean pet results. having the pet was good for me, and it was the first time since dx that I have felt sure I didn't have mets. (altho I still could...wonder how long the relief will last?) I had been very concerned for some months about rib pain on my bc side, my onc and bs said it is leftover rads pain, but...I was worried, especially since the EE diagnosis. so the pet was a huge relief in that regard. btw, they made me lie quietly in the dark for 45 minutes before my pet, would not even allow me to read as they said it can affect the scan! best, P.

Anonymous · December 2007

My oncologists believe as AlwaysHope's do....the technology is flawed and other tests are far more reliable. They never use them for diagnostic purposes.

~Marin

Member_of_the_Club · December 2007

I've never had a PET but recently had a false positive on a breast MRI. I was told birads 5, highly likely to be malignant, and it was benign. Of course, it was a pretty awful roller coaster but I;ve also had the false negative (when i first found my lump it didn't show up on a mammo or u/s) and I'll take the false positive over the false negative.

I find the thing about exercising to be very troubling. The way I deal with stress and anxiety is to exercise and when I am having medical tests I increase my exercise to deal with the stress. I don't know if I could not exercise for 48 hours before a scan.

iodine · December 2007

I've not had one, but I've had "incidental findings" on a MRI. They found what they thought was a hematoma -bleed- between my L-1 vertabre and my dura (sac around the spinal cord). This is a very rare occurance.

A neurosurgical consult wanted to do back surgery right away. He felt we needed to find out what caused the bleeding and then more agressive surgery if a lesion was found to "rule out" mets.

Scared me to death.

I just didn't feel right about it and waited for 2 consults on the films from Fla and Vandy. It took weeks.

All came back well, at least 99.9% sure it's only a bleed of unknown origin.

I decided not to have surgery, but it took a lot out of my dh and me. All the worry and what if's and etc.

The original back and leg pain were forgotten by all the docs once this spine thing showed up. I just kept on with meds. and finally got better.

What I'm saying : if you've had a dx of cancer, and you have incidental findings on ANY testing--someone is going to want to DO something. Just because of the dx and just to "rule out" any cancer problems. And to cover their ass.

So--think over what you ask for.

PET Scan stories?

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