Frightened -Post Chemo Pet Scan Results

Maur1966

Hello,
I have been reading posts throughout the past few mos, but have never posted until now. I am a 38 yr old woman, diagnosed with Hodgkins Stage 3 or 4, no one really knew for sure. The Hodgkins was in my neck (That is how I knew I had it from a biopsy), in my chest, my spleen and possibly starting in my liver (thus the confusion about the stage 3 or 4). I never had any classic symptoms, so I was classified as an "A" rather than "B". I started on ABVD Oct. 12, 2004. I completed 6 cycles (12 treatments) and my last treatment was on March 21, 2005. I had a ct scan in November 2004 and it revealed that the Hodgkin's was gone. The ct scan was NORMAL. I did not have any other scans until completion of the chemotherapy. This scan was a Pet Scan on April 12, 2005. This was done exactly 22 days post chemo. I rec'd the results this morning. They were not what I expected. Since my ct scan way back in November was normal, of course I thought that after 9 more chemo treatments, why wouldn't the pet scan be normal, right? Wrong.... My oncologist was basically clueless as to what to expect, do or what this all means. (I have lost faith in her at this point). She suggested that I follow up with Fox Chase. I had consulted with them initially for a second opinion. Also, I have consulted with a radiation oncologist back around my 5 cycle of chemo. He said that I would not need radiation since "my cancer was well behaved" (his exact words) and my ct scan from November was normal. Now I am totally afraid and frightened. I was able to get an appt for this Thursday am at Fox Chase. I will meet with another oncologist and the radiation oncologist is on vacation until next week. Here's some of the report....if anyone has any information or has had this experience, please let me know. My husband and I are extremely fearful at this point. Thanks! Maureen

The current examination demonstrates a small right paratracheal node with a peak uptake of 1.8 SUV. There is a small pretracheal node at the level of the aortic arch with a peak uptake of 1.9 SUV. There is a precarinal node with a peak uptake of 2.1 SUV. There is an aorticpulmonary window node with a peak uptake of 2.0 SUV. There is a subcarinal adenopathy with a peak uptake of 2.4 SUV. There is a right hilar adenopathy with a peak uptake of 2.1 SUV. There is probable left hilar activity with a peak uptake of 1.8 SUV. There are no lung masses. There is an abnormal focus of activity to the left aorta at the level of the renal veins with a peak uptake of 1.7 SUV. This is associated with a lymph node measuring 9 mm in diameter. There are no other abnormal retroperitoneal lymph nodes. There are multiple foci of activity in the spleen. The peak uptake in the spleen is 5.0 SUV. There are no liver lesions.
Impression:
1. Multiple sites of mediastinal adenopathy as described above.
2. Bliateral hilar adenopathy.
3. Single, abnormal periaortic lymph node.
4. Multiple foci of abnormal activity in the spleen.

Has anyone else experienced this? especially after a ct scan showed not just improvement...but "normal" after three cycles. I have completed all chemo and now have this? I am wondering what I can expect...does anyone know? I am filled with fear, concern and uncertainty. I have two sons to raise and I can't afford to die yet! Thanks for reading. Maureen~

birdman

good morning Maureen, I'm so sorry that your feeling such stress and anxiety right now, but I completely understand. My situation is quite similar to yours in that I too was showing hot with PET scan post treatment. My docs suggested radiation. However, they were suggesting radiation only a couple of months post PSCT (stem cell transplant) so I decided against it. I think I was right in doing so. For two and a half years after that I would go in and they would do CT assisted biopsies of the area and all would be negative, but last week they went in and did a surgical biopsy only to find sub-microscopic Reed-Steinberg cells and I now again find myself back in the game. So, my point is this: PET scans can indeed show false positives, but they are rare. It does happen though. If you're showing hot then in my opinion you should have something definitive done and really the only thing that is definitive when it comes to what we're dealing with is soft tissue sample, meaning biopsy. Have your Docs get a piece of the suspicious area NOW and not later. Please don't hesitate to email me back and ask me anything. Stay strong, you WILL make it through this.
--Shawn

stepet

Hey There, I can totally understand where you are comming from with the results of the pet-scan. Let me just say that the pet-scan is not fully developed and is not only going to show cancer. It shows abnormalities, which could be anything from scar tissue to a pulled muscle. I have had positive pet results, only to have a cat scan done and show muscle pulls and arthritis. After I finished with radiation my pet showed "activity" and it turned out to be scar tissue. I wish you well and I would definately suggest going to a place which specializes in reading pet-scans. Good Luck Sandi