Hi,

My name is Leslie. I have been living with oral cancer for about 12 years now. I've had numerous sugeries, have constant painful sores in my mouth, and have never had chemo or radiation. I have confidence in my oncologist at Sloan Kettering.

I have never talked with anyone who has constant recurring oral cancer. I could really use a support group ( I live in northern New Jersey) or at least talk to others who have recurring oral cancer.

Is anyone out there? Can anyone help? Thanks

Hi Leslie and welcome

I have seen a few posts from people who seem to be constantly chasing recurrence around their mouths,so i am sure you will get some replies to your questions,

liz

Leslie,

I am curious why you have never had rad/chemo ?? What is your RO's, MO's reasoning ??

Hi Leslie,

I went to Sloan Kettering too. Just started radiation yesterday. I don't have any experience with recurrance. But I do live in NJ (central) also. I'm also curious as to why you didn't ever have radiation or chemo. But, the Dr's at MSK are great and I'm sure they have a good reason.

Leslie --

Welcome from another Leslie! For support and information, you've come to the right place.

Use the Search function at the top of each page to look for postings by Lostpassword (she initially posted as JaneP but re-registered after four posts when she was unable to retrieve her password). Over the last five years her husband has had four small early-stage cancers that have been treated with surgery only; he is seen at a top cancer center in Florida. You can use the icons at the top of each of her postings to send her an e-mail or private message -- she checks in regularly.

All the best,
Leslie

Leslie
I was told by my ENT Doc that some people have unstable epithelium, so if you are like me and nothing so far has been too invasive that's probably why we have got away with surgery as first line of treatment.
Sunshine.. love and hugs
Helen

Hi Leslie,

Welcome to OCF. I have fortunately not had a recurrence of my SCC and I only had surgery. I would certainly take my surgeon's advice if I did have a recurrence and it was felt that only surgery was again indicated. This decision of course would be made by a team of doctors at Fox Chase where I was treated, just like the first time. You are being treated at one of the top rated Cancer Centers in the country and well you should have confidence in your doctor. Perhaps you should question him/her about what is bothering you, as you should know all there is to know about the treatment that you have had. Talking about it, I'm sure will help put your mind at ease.

BTW, I am in North Jersey all the time as my daughter and her family live in Springfield and my son and his family live in Randolph.

Feel free to email me if you think I can help you further.

Jerry

Hi Leslie -
The other Leslie is correct in that my husband also has been battling mouth sores which turn to SCC, since early 2002. As Leslie mentioned, he has had 4 cancers. He has had surgeries all 4 times, going thru a neck dissection the first time (all nodes clear), losing 3 teeth, and his jaw was shaved. The last one was a mild "in situ" on his lip, however. Because all the margins were clear each time, all scans showed no "hot spots", and most were "superficial" cuz they were caught early, he has never gone thru rads/chemo either. His mouth sores, however, all seem to be tied in with continuing lichen planus and possible leukoplakia. He is monitored constantly, both in our town and up at Shands in Gainesville, Florida. His last 3 biopsies all were benign. He will be seeing a specialist in January, up in Gainesville, who may offer some treatment against the mouth sores. He uses "Dukes Mouth Wash" (prescription) and has found cranberry juice very soothing for his mouth. He rarely has pain associated with the lesions. How many surgeries have you had? His ENT here mentioned a patient of his who has had dozens of surgeries for SCC over many years. So there are people who experience recurrences many times, but they seem to be a rare but legitimate group. If you have any questions, don't hesitate to email me.
(and THANKS Leslie B for your excellent memory!) Warmly, JaneP

Thank you all for responding so very quickly to me. As I mentioned I've been dealing with this for years. It is really only in the passed1-2 years that I've been on psycological overload about it.

I've had numerous biopsy's and lasers sugery, the first actually surgery was in June of 1999. I got a few years with just painful sores and lukeoplakias., By August of 2003 I had later another sugery. I was still ok with that one. At least I got some time between them. But then 6 months later the sores were malignant again and more sugery.I made it to Sept of 2007 before another surgery including the neck disection, teeth removed, some jaw taken. Then I only got a week before those nice clean margins were malignant again.

I am emotional a crazed lunatic. I know we watch them very carefully and treat them very early. But I'm in and out of work either recovering from surgery, doped up on pain meds, or just in pain.

I see a pain mgmt Dr. who has the pain under reasonable control...although my concentration at work is not great. I love my Doc at Slan Kettering and have a lot of faith in him. But am I crazy to with it was breast cancer? We could just remove it, have the chemo and be done with it.

Right now, every time I go to the oncologist, I don't know if I'll be cancelling everything on my calendar for the next 2 weeks , or going to the weekend plans after all.

Anyone know of a support group in northern jersey that may be able to help with the mental problems of this recurring nightmare?

Thanks,
Leslie

To Jane P:

Thanks so much for writing.

It sounds like your husband is vey similar to me with several recurrences. I have constant pain with my sores and leukoplakia. I've had two surgeries in the last 3 months both ending with clean margins and no radiation or chemo has been recommended ever. The Dr. tells me that chemo is not appropriate for this type of cander and he wants to "save" radiation for a later time. ]\\

We do catch these early as I get checked every 90 days and some times sooner if I'm complaining a lot about the sores.

I slso see a pain mgmt Dr. who has me on morphine and fentanoly suckers 24/7. They make me feel physically better but very 'fuzzy". It's very hard to concentrate at work.

I was ok after the first several surgeries as I would have several years between them, but now they come more often and I'm getting very depressed about it now becasue every time I start to get my life back together, here comes another surgery.

Any suggestions on dealing with the emotional aspect better.

I feel that working 30 hours a week instead of full time, might ease things up a bit, but my oncologist feels gung ho on my getting back to regular life immediately after each surgery.