Hi All. I cannot tell you all what a wonderful resource this site, and these forums, has been. I was diagnosed on April 23 with a Stage 3 SCC on my left, lateral tongue (I'm a previous Non-Hodgkin's lymphoma survivor, as well).
I had a partial glossectomy and upper neck (left side) dissection with a free flap on May 19 and I'm being sprung today. Cannot wait to get home - just started eating again yesterday, and all that work to swallow crappy hospital food just seems a waste! I'm scheduled to start radiation with weekly Cisplatin - but for now, I'm healing and planning on resting for the next couple of weeks.

Congrats for being a trooper this far. Soon after the rad starts you will loose your taste and it may not recover for well over a year. You will also loose your saliva and you will most likely loose a lot of weight so take this time to eat everything you dream of without regard to FAT or HEALTH. In fact it's a good idea to try to gain as much weight as you can right now. Quite the opposite of what we are told each day but, believe me, it will come in handy as you progress through your Tx.

All of us here will help you throughout this process so don't hesitate to ask any/all questions or just vent. WE, for the most part, are not doctors but we are VETS so use us.

Where are you being treated?

Were you a tobacco user?

Good healing and good luck.

Hi Margaret,
Enjoy your days of rest at home over the next weeks.
As David says eat all your favourite foods over that time.
Take care and all the very best.
Gabriele

Thanks for the responses : )

David, I'm being treated at Dana-Farber in Boston and never used tobacco. The eating thing is still a little difficult with my new tongue, but the good news is I'm already about 50 pounds overweight, so I'm ahead of the curve on that.

I talked to nutritionists and swallow therapists before I left the hospital, so I'm eating as best as can for now. Each day its gets a little bit better.

Margaret,

I have only heard positive things about Dana and it's best, in my opinion, to be treated at a Comprehensive Cancer Center where there is a multidisciplinary approach to your treatment plan.

As far as your weight, don't get too comfortable with being 50 pounds overweight. Some people loose far more than that during Tx. I was at my ideal weight going in and lost 30 pounds and it took me over a year before I started to add some weight back.

Since you were not a tobacco user have you been tested for HPV?

David, from what I've read, I expect weight loss and retention to be a huge problem (during treatment for lymphoma I lost quite a lot of weight) but its so rare for me to be able to make light of my weight problems.

I haven't been tested for HPV, although suspect I am negative. My thinking is my earlier chemo is more a risk factor for this illness than anything else. As I go along, I may ask more questions about this, but for now, I'm not seeing the cause as so important.

Any food you can eat, go for. I would just love the cheapest and least desireable type of real food,. I have had no solid food since early January and it will be quite awhile before I am allowed to get dentures. LOL Eat anything in sight even if you can't taste it. Take a few bites for me while you are at it.

Margaret,

Not sure I understand what you mean when you said....

My thinking is my earlier chemo is more a risk factor for this illness than anything else.

Also how can you suspect that you are HPV-? The 2 main causes of SCC are Tobacco and HPV so if you weren't a smoker then you stand a good chance that HPV is the cause.

Margret, Welcome to this board. I got a second opinion at Dana Fraber three years ago when I had my tongue cancer and I now wish I gone for treatment there as well (long story). I have been treated since at Brigham and Women's for esophageal structures so it's possible we've seen some of the same docs and speech pathologists. I'm seconding what everyone else here has said about eating everything you love right now before the radiation starts. I also was about 50 pounds overweight when I was diagnosed and by the end of treatment I was very glad of that as I lost about 60 pounds the year I was treated (I also was treated kind of simultaneously for breast cancer so it was a hard year for all sorts of reasons).

David, if Margarets cancer was on the oral tongue, which it sounds like it was, then the location of Margaret's tumor isn't typical of HPV cancers from what I've read. But I think if she isn't interested in the cause right now, the best thing to do is not argue about whether it is caused by HPV with her. It doesn't make a difference to her treatment.

Nelie

I agree, thinking about cause right now is a mute point, and there are more important things to focus on. HPV status is not right now going to alter treatments decided on, and anterior mouth cancers, given what we know right now, are seldom HPV positive.

I have to chime in about about losing taste for over a year. I didn't. My taste came back well before a year and I had the toughest type of radiation out there. I just don't want to mislead anyone into thinking that they won't be able to taste anything for a year, that's a scary thought!

Margaret, good luck with treatment and come here for all the help you need.

Minnie

Yes I agree that the location is not typical of what they have reported as typical HPV primaries but given that I have been told the major causes of Oral SCC are Tobacco and HPV, I am just curious of how she came about saying that she suspected she was HPV negative.

While it may be true (now) that HPV+ SCC is treated the same as HPV- SCC that might not be true later as more details are compiled about HPV. My RO made the statement to me that had he known that I was HPV+ he may have treated me differently than he did. I still have not gotten a chance to ask him what he meant but hopefully I will remember the next time I see him. I haven't seen anyone that posts that they are HPV+ being treated any differently and I'm not sure I would want to be the first guinea pig either but his statement was made.

As everyone that reads my posts knows by now, I want to increase the awareness of HPV. It caused my life to be turned upside down and I had never heard of the Oral connection until it was mentioned on this very site. Recent studies have also indicated that there may be a better Tx outcome and a lesser chance of re occurrence with HPV+ SCC so if someone tests positive for HPV that may give their mental outlook a boost which may help them throughout their treatment and recovery. Right or wrong I felt relieved that I knew my cancer's cause and it eliminated a nagging question lurking in my brain. I also felt relieved when the results of the study were published so I want every non smoker to be aware of HPV as potential cause to their cancer.

Wish my taste woulr return LOL but i am now a year out yet.

David, Major causes does not equal ONLY causes. They are the only ones identified thus far. There's nothing worng with asking a new person if they've been tested for HPV but if they aren't interested, I think it's a good idea to LISTEN to what their needs are instead of insisting on your own agenda. Just a thought.

Nelie

Margaret:

I wish you the best of luck with your continued improvement. Eating is something that most of us struggle with after treatments. I hope you are able to find some nutritious high calorie foods that you are able to eat. Your body needs around 3000 calories per day to properly heal.

I too had been a bit chubby before I went thru radiation and chemo. For me I wasnt too concerned about losing weight since I felt I had a buffer. I am now very thin and struggle with very low blood pressure and fatigue due to being thin. Please be careful with losing weight while being treated. My weight loss was not intentional, it just fell off from being so sick.

Im glad you have a nutritionist and swallowing therapist working with you. They will be able to help you thru this transition of relearning to eat.

Best of luck