I was out of town at Children's Camp this past week. I was leading a Bible study for a group of young kids and had a helper. My helper was a 9 year survivor of throat cancer. It was amazing. He told me the story of how they found it and that is was advanced. They did surgery, chemo, and radiation. He is cancer free today. He told me that he still has the dry mouth issue. It gives me hope that there are survivors out there and I got the priviledge of working with one this past week.

Angelia, what a nice story. Its always so inspiring to meet others like ourselves who have fought OC and won. They are the ones who understand us the best. Oral cancer isnt like other cancers. Its after effects are sometimes very long lasting and debilitating. Ive met many survivors and its always a joyous occassion just knowing there are others like me out there.

Angelia,

One of my patients is a 22 year OC survivor. At his last visit to Fox Chase Cancer Center he was told that he's wasting their time and he need not come back!!!!!

How great is that? He was thrilled.

Jerry

That is the news we all want to hear. Thanks for posting it Jerry. We have a couple in this town and one that just went into hospice the 1st of this past week.

Angelia,

Would be nice if he could post here and put us all to shame. lol

Yeah, I meant to tell him about this forum, but never got around to it. It is amazing though. He has also had both ips completely replaced and told he would never walk again. His cancer was stage 4 and he was also told he would never be able to talk again, but guess what he is walking and talking. It is a great story of inspiration for me.

WOW That one belongs an a list of heros.

I have been following this site for over 2 months. I have been the care giver to my husband John who celebrates 30 years as a survivor this month.
I don't know how to stage him but he had a partial glossectomy of 25% of the right base of his tongue and a right radical neck dissection August 1979, The tumor was the size of a walnut, was poorly differentiated squamous cell carcinoma with involvement of the 2nd 3rd and 4th cervical chains. This was followed by 6 weeks of radiation.
We have had many ups and downs over these 30 years. He had two right thoracotomies done (1987 and 1996) Thankfully both lesions were benign. There was a two week period of severe hemoptysis with clots in 1999. He had bronchoscopies done at the cancer care center and at our local hospital as well as a pulmonary arteriogram but again thank God no reoccurrence. He was diagnosed with hypothyroidism in 2003. Has had mutltiple basal cell lesions removed from his face and under the right clavicle. He never had a PEG and only had the trach post op for his original surgery until now. He has been healthy and leading a wonderful productive life until Feb 2008 when he was admitted to the hospital due to aspiration pneumonia. He recovered and returned to work and our life was good again until Dec 2008. He has had 3 more admissions for aspiration pneumonia. PEG feedings were started in December. He had to have a Left lower lobectomy in Feb due to empyema and a bronchopulmonary fistula. He was on a respirator for a week during his third hospital stay in March and a Trach was done in April for pulmonary toileting. He spent 3 weeks in a rehab and has now been home since May 5. He is doing great since he has been home. He has gained 22 pounds back and is only 6 pounds away from his normal weight. He is off the oxygen and no longer needs to be suctioned. We are able to walk 3/4 the way around the block (about 3500 feet) and his O2 sat is around 94 when he is done. He is also using a stationary bike for 30 minutes a day. A speech therapist sees him twice a week.
He was well enought to get MSK cancer center in NY 2 weeks ago for an evaluation to see if any thing can be done for the swallowing difficulty. His original surgeon is still there (he is the department chair) but he referred us to someone else. They are going to do another GI evaluation and he will be seen by their speech therapist for another swallowing eval. The doctor said for now the only thing that he believes he can offer John would be a laryngectomy with a permanent trach (pending the GI and swallowing evaluation), John will have to decide which is more important to him speaking or eating. During his appointment they changed his trach, put in a smaller size without a cuff and gave him a Possamur valve which he is using all the time so his speech is back to normal. He remains NPO and on the PEG feedings.
His biggest difficulty is the inability to sleep.
He does not really get to sleep until around 3 or 4am and then sleeps in cat naps until around 11.
Sorry this was so long but I wanted everyone to know that there are LONG term survivors out there. They probably are busy emjoying their lives so you don't hear about them.

Awesome. I have no doubt that there were long term survivors out there, but I had never known. To actually meet someone who is a survicvor and be able to talk about our experiences and understand how it feels was a wonderful thing for me. I did not feel so alone, you know?

I'm not much of a flag waiver but since we're on the topic of very long term survivors...

My mom was diagnosed with her Thyroid Cancer initially in 1944 (age 19). They partially removed the thyroid at that point and did X-ray radiation (general blasting). She had a re-occurrence just after I was born in 1956 and the thyroid was completely removed. Fast forward thru the years and several more battles with Cancer, ovarian, uterine, both breast, colon and finally pancreatic, she died while I was undergoing my own battle 3 years ago at age 81. Doctor said she was the oldest living Cancer survivor he knew of in the state of Louisiana (62 years).

They're out there!


Kevin