Hello, I'm new to this website. I am 6 mos post treatment for SCC on base of tongue and a 7cm mass on the right side of my neck stage 4 HPV positive.I had a PET scan done in June 2017, my doctors said that in their opinion I was cancer free :-), but they want me to have another one in November/December to be sure. I chose not to take the PEG tube because I didn't want another issue to deal with, or wait any longer to get the treatment started. It was truly rough. I lost 70 lbs in 3 months. I'm hoping to be a help and to get help while going through all this. I am curious to find out if any long term survivors have had their saliva glands return and if the lymphedema (mucus in back of throat) ever goes away? I always seem to be concerned about re-occurence.

Thanks for joining and your update. What type of treatment did you receive and how long did your treatment last? Was it during the 3 months that you lost 70 lbs?

Welcome to the forum. Thank you so much for being prepared to help. I'm sure someone will come along soon who can answer your questions about dry mouth and lymphedema. Have you gained any of your weight back? What do you do to put on the pounds?

Timothy -

Hindsight is always 20/20. your weight loss would have been much less and the treatments a little easier if you had accepted the PEG. Actually, I'm surprised the doctors allowed you to continue treatments while losing so much weight.

Unfortunately, the thick mucus in the back of your mouth / top of throat will remain for quite awhile. If you hydrate enough, the thickness is reduced and it becomes a bit easier to deal with.

If you're not producing saliva at this point, you may have to deal with using alternative sources over the long term.

Recurrence??? It happens from time to time. There's not much you can do about it. Don't skip any follow-up visits or scans. Maintain good oral habits If something changes from your current condition, don't hesitate, contact your ENT and schedule a visit.

Don't waste too much time or energy on worrying about recurrence. Concentrate of being cancer free and living the best life possible.

Good Luck

Welcome to OCF, Tim. Its always great having survivors join our ranks!

At 6 month post rads, you actually still have a lot of recovering to go before you are finished. A complete recovery takes a full 2 years. At the 6 months post rads most patients are feeling pretty good with a few complaints about food tastes and dry mouth. Over the years Ive seen patients report advances in their recovery with their sense of taste and dry mouth until around the 2 year post rads mark. A few even have said they have had improvements a month or 2 post 2 years. You should be like most of us and notice many more improvements with your sense of taste, dry mouth and mucous. Those 3 things are nasty reminders of what you just went thru but at least they are only temporary. In time, everything will improve and hopefully you will return to almost as good as you were prior to getting OC.

With losing so much weight in such a short time, you also lost muscle as well. Just telling me you lost 70 pounds is all I need to hear to know you must have struggled thru your treatments. I also lost a significant amount of weight in a short time and had a very difficult time getting thru rads. At 10 years post rads, I have yet to put any substantial weight back on. Your body has been beat down and needs lots of fuel to rebuild itself. At the very least until you hit your 1 year post rads you should be taking in a bare minimum of 2500 calories and 48-64 oz of water every single day. Since you lost so much weight, even taking in 3000 or 3500 calories will help you get back on your feet. Your body is burning up calories like crazy trying to rebuild itself, even taking in 4000 calories daily probably wouldnt result in weight gain right now. Your body desperately needs this extra fuel to rebuild what its lost and to return your strength and stamina. A high protein diet will help to build you back up. Check this with your doc to make sure it will work for your particular situation as they know your full medical history and whats best for you. What Ive seen here over the years is the better a patient does with their intake, the better they do with treatments and recovery.

As far as recurrences go... that is the number 1 fear of every single OC patient on here. After the horrors of treatment and what seems like a very slow, long lasting recovery we all are afraid of going thru it again. The odds actually are in favor of not going thru a recurrence. Your doc has your scans scheduled like what most of us have had, 3 or 4 months post rads, and at the 1 year mark. Its all part of the routine check ups to ensure if anything would look suspicious it would be found and taken care of right away. You know your body the best and if you notice anything different that is not normal or something appears out of the blue, call your doc and get checked out.

Best wishes with your continued recovery

Timothy,

I'm about 4 years out from my treatment and went through a lot of what you're describing. I didn't get a PEG and lost about 80 pounds in 5 months after starting out at about 230 pounds. I had the salivary glands on my right side removed, so I've had to adapt and always have a water bottle with me.

As I remember, the mucus went away about the same time that I started eating regular food again (about 2 months after radiation finished). The lymphedema lingered a lot longer, about a year. After my insurance year started over, I went back to the lymphedema therapist and got an additional treatment or two and that seemed to fix it.

Try not to worry about recurrence. Hang in there, it will take time, but you'll eventually get back to something like normal.