Hi Everyone: I am new to this site. I was diagnosed last month with stage-4 base of tongue cancer. I have been working with a cancer center close to my house but have a consultation at Dana-Farber in two days. I am pretty scared but have a lot of support: my partner, our three kids, family, friends, work. I am nervous that the doctors at Dana-Farber will recommend a different treatment plan. What do you do in that case? -Michelle

Hi Michelle, I'm not familiar with Dana-Farber so can't be of much use in that regard but I'm sure the other guys here will offer you heaps of advice. My husband was diagnosed with stage 4 SCC almost 2 years ago now. It had spread to his lymph glands and jaw bone. I'm happy to say that 17 months out of treatment he's still cancer free. He had 35 IMRT sessions and 3x cisplatin. No surgery as we were advised the cancer was too far advanced. One hospital wouldn't do surgery and the other offered it but when told of the after effects and quality of life he would have afterwards we opted to not have it. I suppose when it comes to different treatment options you just have to research each one (ask lots and lots of questions) and then work out what's best for you. Hopefully the other guys on here will be able to offer you more help. Either way I'm glad you found us all. Here you will find the best support network.

Are/were you a tobacco user?

If not make sure you ask them about HPV.

Stage IV with BOT, that's an unusual Dx without nodal involvement.

Michelle,

I was treated at Dana-Farber and I think you'll find the doctors & nurses there to be absolutely top notch! If you do get a different treatment plan recommendation, don't be hesitant to ask them why and take all the time you need to get satisfactory answers. My doctors there were never too busy to not answer all my questions or address my concerns.

My experience is they will take the more aggressive treatment path, at least they did with me and will do what needs to be done to a) keep the cancer from ever coming back and b) maintain as good a quality of life as can be achieved.

I think the most important thing, and this is true wherever you are treated, is the best advocate you have is yourself. No one else has as much to gain or lose from your treatment as you do. Ask questions, challenge decisions if they don't make sense and don't let yourself become a passive observer of your care. You have to know what's going on and why.

- Margaret

Michele, welcome to OCF. You will find lots of info to help guide you thru your journey. There will be lots of support as well. I dont know the other cancer center you have gone to but I do know Dana Farber is top rated. This is very important. You will want to be treated at a large cancer center where the doctors will consult with each other. They will have experience in treating hundreds of oral cancer patients instead of a handful a year. It is a tough decision to make but it is the most important one in your life. A place that offers what sounds like an easy way to treat cancer may not be the best place to rid you of it for good.

Right now if people are asking you what they can do, write down their name and number and tell them you will let them know when the time comes. You will need help later. Even if its to pick up a few groceries, walk the dog or stop at the pharmacy. If you have children then maybe a friend could take them out to the movies to give you a few hours of quiet. Small things like that will mean alot to you when you arent feeling the best.

Right now you should be eating everything you want and then have seconds. Make sure you have all your favorites. You dont want to go into this with regrets. For a while your sense of taste will change. Dont worry, its only temporary. Also dont worry about weight gain right now. Gaining a few pounds will make it easier for you since most of us lose weight no matter what treatment path we take. I lost 65 pounds and have not gained it back and I began this 3 1/2 years ago.

So tell us more about yourself. How old are you? You can add a signature which is very helpful in getting to know you. Its the block at the bottom of the page under the My Stuff tab.

Thanks so much, Wendy. I appreciate your feedback. I think my treatment plan is similar to your husband's: 7 weeks of radiation; three treatments of chemotherapy. No surgery unless the radiation doesn't shrink the tumor. This is what Baystate in Springfield, MA has recommended. We've been told that Dana Farber likes to add something called chemo-induction therapy, but I will know more tomorrow. Congrats that treatment has gone so well for your husband. I will check in to know more as he continues on his path toward wellness. When I see what's ahead of me everyone who is even half a step further along than me is my hero. Best, Michelle

Thanks, Christine, for taking the time to reply to my post. I will add to my signature. It is nice to get the low-down on people right off the bat. I am seeing that as I read other people's posts. I am 48, a professor at a community college, mother of three (twin boys 4 and a 9 year old daughter). My partner has been amazing; I am grateful to her. It's so trite to say, but I can't believe this is happening to me. About an hour ago, as I was reading people's posts on the feeding tube, which I get put in on Friday, I kept saying to myself, "I can't do this," but then reading other posts, I knew I could. This forum is a new thing for me; I barely do facebook, but I think I am going to like it. Thanks again for reaching out to me. -Michelle

Hi David: Does nodal involvement mean the same as metastatic to lymph node? That's what sent me to the doctors in the first place, a painless bump on my neck, which was the enlarged lymph node. When they biopsied it in December, they saw squamous cells. First they called what I have squamous cell carcinoma, then oropharangeal cancer, now base of tongue cancer. And yes, the primary tumor on the base of tongue is HPV positive. I am told this is a good thing, since HPV positive tumors respond well to treatment. I am learning so many new words; it's like a whole new language. I don't yet know the abbreviations, but that will come. -Michelle

Michelle, I add my welcome and best thoughts. I know Dana Farber is highly regarded, and you've got a great support network (including all of us here) and a positive attitude. You're going to get through this!

David 2

Hi Michelle Ann, welcome but sorry you have to be here. My husband's diagnosis sounds similar to yours. He had weekly Cisplatin instead of the does of three. Like Christine said, eat everything in sight to put some pounds on before treatments start. John reluctantly had the PEG placed before treatments started convinced he wouldn't need it. He started using it around week 3 and even with it in lost 30 lbs. Hydration and nutrition are very important while you are going through treatments. You have found a great source of support and information. Good luck. As you can see from my signature, John was diagnosed 2 years ago and is doing great!

PS - It sounds like your cancer presented just like my husbands'. He had no other symptoms except for a non-painful lump in his neck. A CT Scan showed thickening tissue at the "base of tongue" and when the ENT withdrew fluid from the lump it came back malignant. My husband's tumor was also HPV+ which is supposed to be good since it responds better to treatments.

Thanks David: Your words mean a lot to me. I can't believe I found this site. It's really great. -Michelle

Thank you for sharing your husband's story with me. You must be so relieved that his scans are coming back clear. Yes, I was told the HPV+ tumors respond well to treatment. Glad we have something in our favor. I am not happy about having the feeding tube put in on Friday, but who is? Please accept all the positive thoughts I am sending. Best, Michelle

Thanks, Margaret, for your reply. Did you have something called induction chemotherapy at Dana Farber? My doctors at Baystate in Springfield seem certain that Dana-Farber will recommend it on top of the 35 treatments of radiation and 3x chemotherapy. I gather it is pretty intense. The literature out there argues for against that much chemo. How exciting for you to be able to write "cancer-free." Keep writing it! Keep being it! Michelle

Michelle,

We will go over everything when you call but I'm sure they mean concurrent chemo as opposed to induction with the former meaning radiation and chemo given together and the latter meaning just chemo alone as the only treatment plan.

Dont worry about the peg tube being put in. It will be uncomfortable for a few days. If it feels too tight make sure you have the doc loosen it. Im full of peg tube pointers so let me know if you have any questions.

You sure have your hands full with having 3 children. Twins too! Make sure you keep a log of every single offer of assistance. With 3 young children you will need some helpers.

Thanks for adding the signature. It helps alot

Bst of luck Michelle, my thoughts and prayers are with you! I know how scary it can be!

Michelle, I was treated at Dana-Farber, and they were wonderful on all counts! Skilled, kind, attentive; I continue to have my check-ups there and continue to be wowed by them. I had surgery, then concurrent radiation and chemo -- and I've been cancer-free for almost a year and a half now.

Much luck with everything; you're in good hands!

Michelle,

No, my tumor was on the forward part of the tongue and was removed surgically before I underwent radiation/concurrent chemotherapy to clean everything up so your treatment plan will be different than mine.

I will say that all of the treatment options for head & neck cancer are pretty intense and yes, its fabulous to be able to say 'cancer-free.'

Michelle Ann, keep me posted about your feeding tube. I will most likely have to have one, I'm tall and thin and can't afford to lose much. I've already lost 7 pounds from the tonsilectomy. It may be trite but I have asked myself the same question many times.
Joel

No matter how intense and scary it is, Go through with it. I will tell you I was scared out of my mind, but am glad I went through everything I did, because I am still alive today.

Only thing I know about BOT is I have not so far heard of anyone having surgery before radiation and chemo.

I know with my treatment i lost 70 lbs, and I was a bit overweight before, so i thought i would be fine, but when you lose the weight, it's not the fat that you would like to lose, it's muscle. so it's really important to eat what you can now and try to stay as active as you can, while you can.

I depended on my peg to get my pills in, and even though I couldn't use it so much for nutrition as I contracted cdiff during my hospital stay when they put it in, Most don't have a problem with it, and they can use it to get a decent amount of calories and fluids in a day.

I had to have a PICC line put in, almost like an iv, but goes straight to your heart, for my nourishment issues cuz of the cdiff that wasn't diagnosed correctly until after i had peg pulled.

I am glad you found this site, and it's tough to say what exactly someone will go through because no two surgeries, treatments, side effects, or people are the same. Everyone reacts differently when it comes to healing time, treatment and meds. But I know the people that have had surgeries or treatment like mine after I did, I was glad to be able to help them when they have had some things pop up, and was happy to let them know what happened for me, so they could compare, and know whether it was a more "normal" side effect, or something not "normal". I always advise to tell your doctors everything that is going on, as they are the best to get info from, but in a way I guess it just made my anxiety a bit easier to manage when I had people on here to talk to.

I will keep you in my thoughts, and hopefully you will be added to the number of people on here that are cancer free still after treatment!!

Michelle, did you get your feeding tube put it? How did that go?