Hello! In January 2010 I was diagnosed with high risk MDS (myelodisplastic syndromes). After consultations with three transplant centers, I chose to have a bone marrow transplant (matched unrelated donor - MUD BMT) close to home at Johns Hopkins. I've done fantastically well and currently have no evidence of MDS.

On August 31, 2012 (my 20 month "rebirthday") I was diagnosed with squamous cell carcinoma on the left base of my tongue. My ENT was surprised with the biopsy results because the lesion was small and shallow and "did not look like cancer." He didn't even do an HPV test. A PET scan this week indicates probable lymph node involvement on both sides. I called Johns Hopkins immediately (my ent does not practice there and seemed offended).

Hopkins scheduled me within 48 hours at their Head and Neck Clinic with Dr. Gourin. She wants to confirm my diagnosis, get a contrast MRI, and have me see their multidisciplinary team this Friday. The hot spots on the PET are small, the largest only 1 cm but are in lymph nodes on both sides.

After the past 2-1/2 years, I feel like a walking textbook on MDS and BMT but this is brand new territory. I'm very worried about the possible implications on treatment due to my BMT. And the specialists in each area are experts in their own discipline but don't seem to have any knowledge in the other. I'm trying to do my own research as much as possible before Friday so I'll know what questions to ask. Has anyone here had a similar experience? Among other things, I'm worried about my infant immune system, graft vs. host disease, and treatments causing the MDS to relapse. I'm grateful that Johns Hopkins is a renowned CCC and less than an hour from home but I'm a firm believer that, armed with knowledge, we must each be our own advocate for getting the treatment that's best for our own particular circumstance. All thoughts will be much appreciated.

I've learned a lot from you already, just browsing the posts here.

Karen