Hello all. This is my first post -- I found the site a week or so ago while looking for some new cancer-related information for someone I know who is being treated for lower gum SCC.

Today is the 15-year anniversary of my surgery for SCC of the tongue (diagnosed as T2N0M0). Surgery was a partial glossectomy with neck dissection, followed by 34 radiation treatments and then a radiation implant. Diagnosis was a long and frustrating process back then, as I kept hearing from various doctors and dentists that the persistent spot on my tongue was nothing to worry about since I had never smoked. Fortunately, I finally connected with an oral surgeon who recognized the extent of the problem, performed a biopsy, and immediately moved my case into the hands of a team of oncologists. Thank God I have now been cancer free for 15 years.

The biggest long term effect of radiation has been dry mouth (not surprisingly). I was in clinical trials for oral pilocarpine (Salagen) a couple of years after my treatment, and it has been effective enough for me that I have continued to take it daily ever since. While it does not get me back to "normal" salivary function, it is a definite improvement for a few hours at a time.

My oncologist periodically does thyroid tests but thus far I have not reached a hypothyroid stage requiring medication.

Certainly the months of treatment and the ensuing months of healing were sometimes excruciating and debilitating, but I'm thankful that life in many ways since then has been far better than I could have anticipated.

I'm glad to see that there is now a growing awareness of the specific needs and challenges of oral cancer. Keep up the good work.

Hi Cathy,
Thank you so much for writing on these boards, we so need to hear from people that have survived and gone on to live the good life. I am one year away from my surgery and 9 months out from radiation......................and I intend to make it to that 15 year anniversary also............and beyond. I have always believed that I will be an adorable old woman (my grandmother is so cute) and I am determined to prove it!!
Again, thank you Cathy and keep in touch with us.
Minnie

Cathy-

It is really an inspiration to hear from a survivor at the 15 year goal!! Hope you can make it to our first get together this October in Los Vegas! It should be quite a celebration of life!!! Just came to the 2 year marker myself and happy for every day that comes! - Kris

Cathy,thanks so very much for that inspiring message...Sure made my day!!!!!!!!! God Bless You and may you have many, many more years cancer free!!!!!!!!!! Carol

God Bless you and your post,Wonderful

H Cathy, thanks for sharing this with us.. great to have good news here.. Gives us a real warm feeling..now you have found us don't dissappear...
Helen

Hi Cathy,
and welcome. It is so refreshing to read a post on the victorious side of the spectrum - we need more of these! You are truly a pioneer. It is great that you are doing so well. You were very wise to be persistent in obtaining an accurate diagnosis.

Keep coming back!

Fantastic Cathy, thanks for sharing such good news. Helen

hi Cathy,

cheers for you! what an inspiration you are.

Your profile says you like 'Music, gardening, photography.' fine ways to spend your time.
you cancer kicker.

cu,
larryb

Hi Cathy, you are really an encouraging figure for everyone here. I am approaching my 3rd year anniversary and have confidence to reach my 15th. One point of interest and hope you can elaborate. It is the clinical trial for oral pilocarpine after treatment.I never thought our mouth dryness can be improved with treatment after radiation. Your post gives me hope since so far, the most frustrating problem with me is the very dry mouth. Other than that, I am just doing great.

Karen

Hi Cathy,

Hip, hip, hooray! I was feeling a bit puny and violated today after physical therapy and preparing for my 7 week clinical exam tomorrow when voila, I come across your post. You have inspired me (and others from the posts) to new heights! Thank you for coming here and thank you, especially, for your great story.

Ed

Hi karenng -- regarding your question on oral pilocarpine. The original pilocarpine, as I understand it, was in the form of eyedrops and has been used for a long time for glaucoma patients to treat that condition. One of the side effects is that it triggers saliva (it also makes you sweat, makes your eyes water, makes your nose run, etc.) so not everyone finds it a plus. However, after trying different doses of the pill form during the trials, I found a level that seemed to work for me and it continues to make a difference -- if I miss a dose I notice it. Because of the fact that it is also an eye medication, I have to go for regular ophthalmogist checkups every couple of years. Let me know if you have other questions.

Thankyou also for making my day also , and as has been said previously by other members, my sentiments exactly.

Cheers!

Tizz

Welcome, Cathy! Can I induce you to make a similar post about once a month, so we can remember, when it gets kind of deep around here, what you have accomplished? You truly are a ray of sunshine! Thank you very much.