Clean PET Scan

My latest PET scan came back clean. My Oncologist ordered it because of weight loss (12#) in 3 months, along with a generally lousy feeling and fatigue. Blood work is OK. Went to family DR. and she doesn't like the weight loss and wants to do a scope down into my stomach. My question is could it be something not picked up on the PET scan. I am having a hard time making up my mind. I am tired of the endless testing. Any opinions?

stitches_87
NHL Follicular
DX 4/09
NED 10/09
Last Rituxan 2/10

Hi stitches...if your weight loss is more than 10% of your original body weight then that would be a cause for concern. This is because that would be classed as a B symptom which can be a sign of transformation in FL.

FL is a very difficult disease to manage because it is slow growing, as you probably know already. It is also one that gives you the most control over how you will manage your treatment over the course of things. For example, I am on watch and wait, not pressing for any treatments even though I am Stage 3 because my tumor is relatively stable. So I see my doc every four months, will probably get a scan at me next appt in December but, in the meantime, just live my life. That is what works for me.

Remember that FL is "treatable but not curable". I don't know what NED is and I don't know what stage you are but the possibility of a properly administered PET not picking up the presence of evidence of lymphoma is fairly slim - in fact, false positives are more of the issue than false negatives, as I understand things. I think one of the keys to successful management of FL is patience. Don't be in a hurry to rush into treatment because, even though you will respond (almost everyone does), not all the cancer cells will be killed and the remission will end at some point down the road. Then, you will have fewer weapons to fight with unless the medical folks have developed more things for us to try in the meantime.

So, unless you have symptoms or an organ is being compromised, there is no medical reason that I am aware of to keep testing. That said, a completely valid reason to have the test is you - if you are anxious, need to know now, etc..., that is valid. I went through a third round of testing including a second bone marrow because my doc and I were both suspicious of the second opinion we got. It turned out to be correct but the anxiety and tests were worth it for me to confirm my diagnosis and my treatment choice - which is to do nothing for now. I had a clean PET scan in July 09 and a dirty one in May 2010. Since the statistics say that when you start treatment has little or no impact on overall survivorship I am hoping to stay away from it as long as possible. When I get there, I will embrace it as I know it is a vital tool in keeping me alive, I am just trying to be smart in how I use the tools.

Good health,

kermica

My weight loss is close to 10%. My last PET scan was a year ago, and the Oncologist felt it was time for another based on the weight loss, fatigue and I did have a fever, and a new swollen node. It was the right call. I am thankful for the clean scan. So, further testing at this point seems over the top. If my weight loss continues, then may have to revisit the idea.

I am currently watch and wait. Next appt. in January. I was diagnosed stage 3-4, grade 2, mixed cell. 7 lymph nodes affected, but no organs. I had Rituxan, but it was discontinued due to allergic reactions.

NED is no evidence of disease. Thanks for your response. I have followed your posts and wish you the best.

Thanks,
stitches_87