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Posts: 106
Joined: Nov 2004

Hi everyone, Last week I had a petscan done. I have this on going problem with the right sacral ala area. Although I am not having any pain, I have had 2 Mri's and a petscan of the pelvic bone which showed an insufficincey fracture or it could not rule out bone metasis. In Feb.2005, the mri of the pelvis showed no change in the right scaral area but also picked up another new area on the left side. It recommended a petscan which I had. The results state nonspecific findings within the right sacral area ala. Considerations include a healing fracture or low grade tumor acticity. Tumor is thought to be less likely due to mild hypermetabolic activity and solitary lesion. The activity this time had a SUV of 3.1. None of my other petscans showed this previously. As this is something new. Nothing showed up on the left side either as the mri suggested. Anybody know about this SUV. My.Dr.said he would begin to worry if the SUV was a 7 ?? On the otherhand I did go to Florida for the first time and proved to myself you can travel with all these bags on my abdomen such as illeostomies,draining mucous fistulas etc. I got on that plane and felt like a real vactioner. It was wonderful. MY blood count or the HGB was 8.4 when I came back. So now I am on predisone again to be saved from a blood transfusion. I have to go back to Sloan Kettering for this blood disorder issue agin as it has not been solved. Anyway good to read everybody messages. I am thinking of all of you guys everday.
Your friend Fran

Posts: 708
Joined: May 2004

Woe, the PET scans often yield inconclusive data. I am so sorry you have to deal with this ongoing unknown. I do not know what the different levels of SUV mean... but I will go ask some of my friends.

I am very happy you were able to feel like a normal person on vacation. YOU ARE A NORMAL PERSON, with some medical issues.
Try not to worry too much. Enjoy every moment.

I will be thinking of you. jana

Posts: 259
Joined: Nov 2004

Fran, I am so proud of you for vacationing and enjoying it. That is an inspiration to us all. I'm sorry about all the unknowns. Life is full of mysteries and cancer certainly holds some kind of award-winning place in being full of secrets and surprises.

I like Jana telling us we're NORMAL PEOPLE with some medical issues. That's going to be one of my new slogans.

Posts: 835
Joined: Apr 2004

This is generally good news although I am sure it still leaves with nagging doubts about what is going on- this is the problem with so many of the scans we have - they still aren't definitive and leave areas of uncertainty that we have to live with.

the PET scan SUV is the Standardised uptake value- basically they use a subsatnce that is taken up by cells according to how metabolically active they are. The more active the more they uptake the stuff and the higher the SUV. Thus cancer cells which are abnormally over active cells that reproduce faster than normal cells have higher SUVs than normal cells. Hence the fact that a low SUV arond 3 is not really indicative of cancer but one over 7 would be. It isn't an exact science as yo know and there is still uncertainty but it is generally reassuring.
hope this helps- if you have further questions do let us know otherwise keep fighting and enjoying your life to its fullest. Great to hear of your vacation- doing 'normal'things we previously took so for granted is incredibly therapeutic and confidence building.
Best of luck,

Kanort's picture
Posts: 1275
Joined: Jan 2004

Hi Fran,

It's good to hear from you. The unknown is always so troublesome. I am so happy you had such a wonderful time in Florida.

Keep us posted on your progress.


kangatoo's picture
Posts: 2115
Joined: Feb 2004

Fran...am happy to hear that at least you were able to have some "down" time. Everyone needs a bit of r @ r to recoup the energy levels....even tho you might feel tired after a holiday.

Hey..thanks Jana for callin kanga normal.
(although whether that applies to my abnormal brain.....metinks am not so sure...lol!)

Keep yer chin up Fran, luv kanga n Jen

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