Hello...my first time to post. I am a retired, 72 yo, married male. Diagnosed with oral cancel (right tongue) in Oct. 2013. I had oral surgery (partial glossectomy and right modified radical neck dissection). I have completed chemo and 38 courses of radiation to the right throat and mouth areas. I had a PEG tub for about 6 months but it is now gone. I have had two throat dilations done and am to get a 3rd one next week. My last PET scan was negative for any cancer.
My biggest surprise has been the after-affects of radiation and chemo--none of the medical staff fore-warned me of any of the complications. I do believe I got excellent surgical and medical care. I am just frustrated with the continual effects I am dealing with. I have painful fibrosis in the neck/throat areas, my voice has/is changing, swallowing is getting worse. I have completed PT, Speech Therapy, and massage therapy for these problems. However, they continue to get worse. I would like to hear from others who have had the same experiences and what can you tell me to expect further down the road?

Welcome to OCF! You have found a great resource full of helpful, understanding fellow patients and caregivers. We know where you are coming from as we have undergone similar procedures.

After surgery and rads, recovery can take a long time. A full recovery can take every bit of 2 years. You still should notice more improvements in your sense of taste.

I wish I had some ideas to help you with your throat issues but unfortunately I dont. I see it quite often where the doctors are not upfront with patients about the after effects of OC treatments. I would suggest throat stretches but you have already done them. Ask your doc about having a barium swallow test to ensure you are swallowing correctly. There may be some swallowing exercises that could be helpful.

Best wishes!

Hi Jimbo, Our interventional radiologist told me that the best way to keep the esophagus open is to put in a stent. But it may cause a lot of discomfort for the patient in the form of a choking sensation. The best way is to dilate the esophagus every few weeks until it is all healed up inside. Every time a dilatation is performed, it inevitably cause tearing in the mucosa. When healing happens, the esophagus may narrow a bit, that's when another dilatation is needed. It does seem to be a long process. But the time between dilatations will slowly become longer as more healing takes place. In the meantime, using the strategies your SLP gives you will help you avoid aspiration. Did your SLP give you speech strategies or swallowing strategies?

Why don't you discuss with your doctor to see if you are candidate for a stent? Hope this helps.

Thank you for such a fast response. I am not sure of the protocol in the chat room but will pick it up eventually.
Saw my medical oncologist today and was told, basically, that what I now have is what I will continue to have. I do have a CT scan scheduled in March. I will check this group often as it seems I have finally found the exact people I need to chat with.

Gloria...thank you also for such a fast response. I will definitely discuss a stent with the GI doctor next week when I have my dilation done. It is beginning to appear that this will be a continuing problem for the long-haul. One of the unpleasant things to which many of us must adjust.
Thanks again. I feel that this room will prove to be a real benefit to me.

Dear Jimbo, it was my pleasure to give whatever information I can to help you feel better and less frustrated. We were there before and got much help and support from others on the forum. Enjoy your New Year's Eve and wishing that 2015 will be a better year for you.

JimBob - adding my welcome to the group. I'm glad to hear that the toughest stuff is behind you and that you are NED (no evidence of disease). That's huge, and I applaud your courage. Unfortunately most or maybe even all of us have long-term issues relating to the treatment that's saved our lives.

I've had probably 7 or 8 throat dilations and, as Gloria said, they tend to come at longer and longer time frames. So I wouldn't be alarmed if your docs suggest more than a few of these. I'm sure there are some folks here who've had many more than I.

Can't comment on the stent but it certainly seems like an option to explore. The barium swallow test is another good thing to consider, I've had several.

Keep us informed. Welcome to the family, glad you're here despite the circumstances!

Hi,
There is something called "myofascial release" physical therapy. I was able to get PT where the therapist had gone through extensive training in this. (John Barnes in Sedona, AZ, is one of the originators of this technique) It has made a difference in the neck fibrosis I've experienced, as I can somewhat copy what the therapist did with my neck. Doesn't cure it permanently, just a management technique I guess you'd say. I am not sure if "myofascial release" differs much from "active release", which I've seen mentioned on OC forum. Someone else can speak to that perhaps.
Anne

Thanks again to all the responses. I went for a scheduled throat dilation 2 weeks ago. The GI doc informed me and my wife that he was unable to do a dilation due to the fibrosis in the tissue. He stated he tried two different techniques but neither would work. He called my radiation oncologist and recommended that I have a PEG tube put in again. We agreed that I do not need a PEG tube at this point as I am still able to eat soft foods and take liquids by mouth at this time. I have had 3 swallowing tests done in recent months; also, a course each in PT for the head and neck; massage therapy for the lymphedema in the neck and throat areas, and also Speech Therapy. I have been using self massages at home, doing the PT and Speech therapy exercises at home also. In the past week I have begun a second round of Sppech, PT, and Massage therapies. A CT scan last week of my head and neck showed no new cancer. Great news!
One of the worst things about this illness is the ever-present feeling that this may be the best it will ever be. That is depressing--but we have to be thankful for what we have.

Jim bob - it does get better. Slowly but surely. Yawn frequently, stretch your mouth regularly take whatever food you can with drinks to make it easier.

I improved steadily and notice changes almost monthly. Surprisingly - I noticed some major changes with my saliva, taste, and ability to eat bulkier foods over the last few months (bizarre since I'm almost officially 4 years out from my surgery (feb 2nd) and just over 3.5 years past my rads treatment completion. Keep working on it. It does get better... patience is the key.
Hugs.