I am brand new to this forum and was, recently, diagnosed with stage 2(?) squamous cell carcinoma of the tongue (never smoked and have been only an occasional and minimal social drinker). Went for 3 opinions at major hospitals in Boston and have decided to go with Dana Farber.
This diagnosis has been deeply devastating & frightening to me, partly because I've always prided myself on articulate & clear speech and enunciation--and am often asked if I'm a teacher.

The surgery will be scheduled within 2-4 weeks.
If possible, I would love to actually meet & talk with someone in the Boston area who has undergone the partial glossectomy at Dana Farber before I go under the knife so if anyone would be willing...Please respond and let's meet & learn from each other over iced tea or coffee (my treat). I've talked to numerous physicians--now I feel an urgent need to meet patients to discuss their experiences preferably within the next couple weeks before my surgery.
Many thanks, in advance, for offering and being willing to meet with me...
Esther aka StarWolf

Welcome to OCF! Your have found the very best place for online info and support. Please feel free to ask questions, express your concerns, fears and if necessary to vent. We will do our best to help you by answering your questions and offering moral support the very best we can.

We want The OCF Survivor/Patient Forum to be a place where people are free to express their concerns, and share information and support. Your request to meet someone with the same diagnosis being treated at the same facility, who is also from your area may not be easily met. Our members come from all over the world so a new member may not always have someone with a similar diagnosis in their local area. At OCF, we also pride ourselves on being as anonymous as any patient or caregiver wants to be. This way a patients medical history is not identifying any one individual which can negatively affect careers among other things.

Even if someone has a similar diagnosis matching approximate age, sex, location of tumor, Stage, type of cancer, etc they can have a vastly different experience than another patient who on paper appears similar. Thats not even touching on many patients quest for anonymity and the HIPAA laws. By multiple members assisting with answering questions, our members gain the input of many and not just one particular local persons opinion. I suggest asking at your treatment facility if any support groups are available in your area. If time wasnt an issue you may find someone local at one of our events. Throughout the year, OCF has many walk/run events all over the country including one in the Boston area. At these events you can meet fellow patients/survivors. Im sorry but off the top of my head I dont know which walk is in which area so here the link to that page...

OCF 2016 events page

Please consider chatting here with our members and trying us out. Many members (myself included) have formed lifelong, close friendships with other members, some who live across the world. As you will learn, only those fellow patients/survivors and caregivers can truly understand what its like going thru this. We have walked in your shoes, we understand things with a depth no medical professional can ever come close to. I hope you will give us a chance to help you.

I know what you mean about always being proud of speaking well and clearly. I did too. It depends entirely on where and how much of your tongue is removed. And for a while after you have radiation, your sore mouth and throat plus the new loss of part of your tongue will really make you feel like you can't articulate at all. But possibly your partial removal will leave you with the ability to speak well after everything heals up, with little other intervention. Your ENT may give you mouth and tongue exercises to help strengthen them. You may be sent to a speech therapist to help get your speech back, as several on this board have been.

Hang in there, one thing at a time. Get the surgery over with and start to heal and reduce the pain from that. Then see the oncologists for a plan for radiation and maybe chemo. take all that a day at a time, and as you will read over and over from Christine, keep your nutrition up as much as possible. If you can even gain some weight between now and surgery, and then get some weight back on between surgery and radiation, do it. These couple of weeks are your chance to enjoy all the fattening foods that you're usually careful about!

Please keep us posted on your progress, I'm pretty new here but there are so many old posts that are really helpful, plus people with a lot of experience to answer anything they can for you.

It's not a fun journey, but you'll get through it, and I'll sure be wishing you the best as will everyone else here.

I have been a regular on the 11th floor at Dana Farber on Jimmy Fund way since 2003, so I know that you are in great hands. Don't worry, they will do their absolute best and hopefully they won't find the cancer is so entrenched that they can get clean margins without too much impact. I know they like to warn us that speech may be hurt, but "may" is the operative word (and while they warned me, my speech is fine).
Neck dissection is quite probably part of the protocol, so be prepared for a scar on your neck. Mine is across the Adam's apple. If I were in a position to ask the surgeon for a favor I would ask to put the line below the apple, more along the natural fold line (but there may be a good reason why they can't). You should rest assured you have the right team on your side. Give us an update next month.