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

Hi Karen

Goodness what a complicated issue you have. I have zero knowledge or experience with MDS or BMT, so will need to leave that to the doctors.

You are obviously well researched in this area, what are your major concerns? Are you concerned your new immune system won't cope with whatever treatment is recommended or is this too simplistic? I would imagine that chemotherapy might create some issues. Any chance of getting one of your old doctors to consult with the current team?

You obviously know to go straight to the best treatment centres so your support network is clearly top notch. This has to be a very good thing and in my opinion, probably the best thing you can do for yourself. The second best thing is to arm yourself with knowledge, which I note you are also doing. Seems to me that you are all sorted.

The thing that jangles some bells though is the idea that lymph nodes are involved on BOTH sides of your neck. I think that might be a bit peculiar. Maybe someone will come along and explain or correct this if I have this wrong? My understanding is that SCC tends to hit one side or the other...?

Maybe once you have a treatment plan, we will be better able to support you and offer useful information?

Karen

I would ask for your cells to be tested for the HPV virus as you seem to file the profile.

It is uncommon but not unheard of to have bilateral nodal involvement but a biopsy needs to be done to confirm that.

It is also unfortunately not uncommon for someone as young as you to have this cancer. Curious, are/were you a tobacco user?

You did the right thing by going to Hopkins. We would have recommended that right off if you hadn't.

Sorry to have to welcome you to this site but believe me this site will prove to be a godsend throughout your journey.

Welcome to OCF! This site is full of very experienced survivors and caregivers of oral cancer. I myself do not know a thing about MDS or BMT. I would be very surprised if anyone here did. I have never seen it discussed on the forum before. I am hoping your MDS doc will know all about the ramifications of battling cancer after being treated for that. If not there could be a specialist at your cancer center that could be part of your team.

You are doing the right thing by heading immediately to a large cancer center. You have chosen one of the top cancer centers in the country. To prepare for your upcoming appointment, check out the main OCF pages. Read thru diagnosis and treatment sections so you know what you will be facing. This website has the most up to date, accurate medical info about everything relating to oral cancer. By learning and researching your disease you will become a knowledgeable patient who is well prepared. The forum is a wonderful place to read about what others have gone thru and to get answers to your questions. It can also be a bit scary when reading about people who have gone thru very difficult times. Just remember everybody is different and will respond in their own ways to treatments, procedures and medications.

Dont be a stranger! Best wishes with everything!!!

Thank you all. I updated my signature - yes, David I am an ex-smoker, quit more than 20 years ago. My doctor at Hopkins is trying to get my slides from my biopsy and plans to do an HPV test. Karen, thanks for the info regading SCC being commonly on one side. I didn't know that. My Hopkins doctor did question the PET scan report regarding the opposite side but I didn't know why except that it was a small spot. She wants to view the actual scan to confirm diagnosis but was unable to load the disc on her computer. She forwarded it to radiology dept. since they have more experience in reading "foreign" discs. I'm continuing my research and working on my question list for Friday. My MRI is scheduled Wednesday. I'm sure you'll be hearing more from me here. I'm glad I found you.

Karen

Welcome, Karen. Best of luck getting things started. You seem to have all of your things in the right place. Here's to beating this thing! We are here for you!

I have no idea what to say with regards to your other condition, though yes the chemo might be an issue to your immune system. Perhaps the 6 smaller doses as opposed to 3 large, or Erbitux since it isn't a true chemo... someone here more familiar with it may have a better grasp of what it does to the immune system. Also work to improve your immune system now. Diet is primary as you likely know. Best of luck, welcome and do get HPV tested. take care.

Just a quick update. I'm still awaiting confirmation of my diagnosis. I had the MRI Wednesday. My appointment with the multidisciplinary team has been postponed until next Friday. There's a doctor at Hopkins who has expertise in both base of tongue cancer and graft-versus-host disease so I'm consulting with him first. My appointment is Wednesday.

I'm learning a lot about head and neck cancer and associated treatments in the meantime. I've decided that blood cancers may well be kinder and gentler, although just as deadly. Although the bone marrow transplant was inherently more dangerous, contemplating the head and neck treatments is more frightening. I'm sure there's some "rear view mirror" bias going on here. The known past looks so much better than the unknown future right now.

Hi, Karen - really glad to hear that you will see the doctor with experience in both issues soon! The head and neck treatments are pretty daunting, but they are definately doable. In some ways, waiting for the treatment to begin is the worst part. Once they begin, you are in battle mode and that will help to carry you through (as you already know).
Maria

Hi there! cancer is scary period. I know the treatment for blood cancers isn't fun by any standard but radiation, is the gift that keeps on giving - the fall out can be mild to catastrophic, though I'm sure that what we do after the treatment has some bearing on the extent. Part of the problem is it has the power to affect us on a social level too, in that it has an impact on eating and in some cases physical appearance. But the plus with it is, despite seemingly taking forever -while you're going through treatment - it has a definitive beginning and end - where as some treatments for blood cancer can go on long term. Hugs hopefully you'll get some clear answers Friday.

Hi Cheryl. Yes, these are all scary things about radiation and they sound remarkably similar to what I've been through with the bone marrow transplant. I spent 3-1/2 weeks hospitalized and another month and a half living in an apartment across the street from the hospital to go for daily clinic visits and to be close in case of emergency. I had severe mucositis from head to bottom. I couldn't eat properly for a year (so hard to contemplate giving that up again), my hair is permanently too thin to wear in anything more than a short stubble, my skin is mottled with hyperpigmentation, and I must be ever vigilant for infection, and signs of graft vs. host disease. My eyes and mouth are permanently dry although improved over what they were the first year. And I'm one of the lucky ones who has avoided immunosuppressants, steroids, and infections. The one good thing is that I can never clean litter boxes again :-), a big deal when you have 6 cats. Thanks for the hugs! They're much appreciated.

I met with the doctor who has expertise with graft-versus-host disease and bot cancer (he's also a plastic surgeon and a dentist, a man of many talents). He did a thorough examination and discussed my results from my other tests - CT, PET, MRI, biopsy. I am HPV+. Looks like lymph nodes are involved on both sides but areas are all small. BOT tumor is very small, less than 1 cm and does not cross center line - completely on the left side. He does have concerns regarding usual treatment becuase I've already had so much chemo with the bone marrow transplant and is concerned about potential graft vs. host issues. He's going to confer with another of his colleagues before he makes recommendations. Overall, he was very optimistic. He said, "The treatments will not be fun but I believe we can solve this problem [the cancer]." I meet with my multidisciplinary team tomorrow. I'm going to start a new thread as I am seeking input from all of you oc veterans. I'm grateful to have found this site.

Brian kindly gave approval for me to link my blog, Mausmarrow.com, in my signature. I started it nearly two years ago when I embarked on my bone marrow transplant journey. The journey and the blog are now taking a new turn but all are indubitably intertwined.

Really glad to hear the primary is small, and that it's HPV+. I am sure that your team will come up with an excellent approach for you.
Maria

We're here whenever you need. Glad he was so optimistic! It sounds like you are in good hands. good luck with all.

Thank you!