I was diagnosed with follicular lymphoma a little over a week ago. Strangely enough, the diagnosis came by accident. Following surgery for colon cancer, and 6 months of adjuvant chemo I had the usual CT scan. It noted an enlarged lymph node in my groin. Subsequent pet scan, biopsy, and flow cytometry showed it to be follicular lymphoma (entirely unrelated to the colon cancer). It is stage one, grade one and radiation is recommended. Anyone else gone through this? Fortunately, no sign of colon cancer.
Hi Michigan and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your FL diagnosis.
I am Mike and I help out around our various Lymphoma groups……. You have been rather unlucky to have had 2 cancers but as FL is a slow growing type of NHL you could have went some time not knowing you had it.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Between late 2013 and late 2015 I had 45 zaps of radiotherapy (5, 10 and 30) and apart from the fatigue of going up and down to the Radiotherapy Unit every week day, some dry skin I had no real physical issues.
For me the setting up was the worst part as it had my laying on my back for a long time secured by my moulds…. the moulds were ok but as I have Spinal Osteoarthritis it was painful on my back and neck.
The one significant side effect of my 10 sessions of Total Lymphoid Irradiation was my immune system was basically switched off for 16 months. The TLI was used as part of the treatment used to switch off my immune system in preparation for my first Allo (donor) Stem Cell Transplant in June 2014…… this failed 6 month later so I went back for a second Allo SCT in Oct 2015 and the TLI was included as part of my preparation!!!!
Let’s see if any group members have had the exact same radiotherapy treatment.
Are you in the UK?…..
Always around to help out
Just asking as there may be treatment differences between the UK and the USA as very high percentage of community members are from the UK as Macmillan Cancer Support is a UK based charity.
You are totally welcome to be part of the forum and let’s look for others to pick up on your post who have had the exact same treatment 
