How long and often should one have scans?

[lpow]

I was diagnosed with NHL the end of 2014 started R-Chop in Jan 2015. and ended with Radiation. Sometimes I wonder if I was mis diagnosed because mine started as a small sore on the outside of my skin on my back and it continued to grow, no one could figure out what it was until I was finally sent to a surgeon that did the biopsy. It came back B cell. It did also grow beneath the skin but lucky for me is did show up on the outside too. My Cancer Doc told me before I had my first scan that it had to be 4th stage to be where it was at. But then the scan showed it had not entered my lymph nodes. I can still feel the places under my skin, but they say it is just the scaring and left over cells (which scare me). My Original doctor has since retired and they have me seeing another for check ups. How often and how long should I continue to get scans?

[Shar0n Volunteer]

Ipow, What type of NHL did they diagnose you with? The frequency of scans would depend on a no. of factors : how aggressive the lymphoma was would be one factor. Individual doctors would possibly have their own views on it also. I would tread carefully and ask a lot of questions - write them down before your next appointment.

Weigh up the facts and act in your own best interests. If you're not happy with the responses ask for a second opinion so that you can have more information.

You will have to weigh up the frequency of scanning (which gives you peace of mind that nothing is happening) versus the risks of too much scanning . That is what I do. Others may offer more insight.

[Hella]

Hi I was diagnosed with NHL B cell indolent follicular stage 2 grade 2 in 2009. I had treatment 2012, 8 sessions of R-CHOP then 2 further years of Rituximab. I did not achieve a good response, only a partial one, however I was told that I would not be scanned again until I presented as unwell as already having had scans and then treatment it was deemed dangerous to have lots more scans after treatment an my oncologist told me that it could lead to other cancers. It's now 2018, I haven't been scanned since 2014 and seem to be holding my own.

[gardenFAIRY]

My first diagnosis was in 2014. I was diagnosed with Diffuse Large B-cell lymphoma. I was treated with RCHOP and went into remission. At the time I was told that the lymphoma may return. I was paranoid all the time because not only did my doctor at the time do any scans, he wasn't even doing routine bloodwork. After voicing my concerns, the doctor finally agreed to a scan. That's when my first relapsed showed up. I was treated with a stem cell transplant and again went into remission. The doctor still wasn't following up as closely as I felt he should be, so I changed oncologists. I had my routine annual check-up with the stem cell doctor and she ordered a scan. (she likes to do them annually) Second relapse showed up but this time it was the less aggressive type, Marginal Zone lymphoma. I was treated with radiation and have a follow-up scan scheduled for 2/23/18. My concern is that with both relapses I did not have any symptoms. I agree that too many scans is not a good thing, but I fear that if we wait until I develop symptoms, the lymphoma may have already returned, or worse transformed to DLBCL.

[Russ70]

I have Follicular NHL and was diagnosed April 2018. Doctor has put me on watch and wait until I get any symptoms (fever, night sweats, weight loss, pain etc). I asked him about the scans and he said they wouldn't really say anything except changing in nodes sizes. As they go up and down and too many scans are deemed unnecessary/dangerous, I will not get one until i have symptoms which I am fine with.