Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.

My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.

I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.

I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.

Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?

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