Sabrina
One only knows how or why we are together in this club. I to was the most clean living eater, never smoked and in great shape from working out and I had stage 2 tonsil cancer. Luckily know nodes. I got 2 opinions from the best 2 cancer institutes near me an luckily they both said the same thing radiation. It was a tough process but now I am 7 weeks out from it and about 98% back to normal. I have some sensativity in the eating a few things and some reduced saliva but glad I did it to help ensure its gone. I hear to many stories of it coming back because the radiation was not done or done to late. Your on the right track, visually after the process and when your skin heals it will not show. Ask the Doctor and nutirsion person for help in pain and eating and you will make it fine.

Sabrina,

I am sure you have read and researched this site frontwards and backwards and kind of have a glimpse at most peoples situations and stories. My mom is 56 she has been battling various tongue and mouth ulcers for the past 10 years (never smoked, never drank heavily, very healthy active lifestyle) she had multiple surgeries and biopsies and they ranged from dysplacia to pre-squamous cell carcinoma until her biopsy in April 2003 came back invasive SCC. She had surgery removing 2/3 of her tongue and part of her soft palate Stage 1 and a radical neck dissection w/ no nodes positive so doctor said no radiation and chemo.

In November of 2003 the cancer reoccured on her gumline very close to where the original cancer was removed so another surgery and she had a skin graph from her leg and then 6 weeks of radiation and 2 chemo sessions. She is very fair skinned (English/German) blonde blue eyed and her skin got pretty burnt up but now just 7 weeks post radiation it has completely healed up and there is no discoloration whatsoever. She has some loose skin around the area where she had the neck dissection but that is probably due to her age. The radiation almost completely disolved the scar where she had her trach with her first surgery. She's thrilled with that! Looking at her (aside from being 5'8 and 125 pounds) she looks completely normal and can eat almost everything already. I also attribute her quick eating to her never having the PEG tube so she was forced to eat by mouth. I am sure you will heal up like a charm.

I am 34 and cannot even imagine battling this at your age. I know that if you check the profile for AzTarHeel (?).... he is about 32 and finished up with his treatment about 3 months ago and maybe send him a private message I think he's about the closest to your age that I've seen on the sight so far.

It sounds like you are in excellent hands and the doctors are doing everything they should. The side effects of the radiation will slowly go away and before long you will be back to your "New Normal". I know with my mom once she hit the three week mark for radiation it was a countdown from that point on. I truly wished that we could have fast forwared through the month of February but she made it through it and now she is about 75%.

My prayers are with you and your family and if you need anybody to talk to you can send me a private e-mail anytime. Everyday for the past year has been an emotional rollercoaster for me.....

Take Care,
Dani

Thanks everyone for your supportive stories and well wishes. My post surgery notes included:

"...They did find more cancer, which was removed. The cancer didn't invade things such as nerve endings. They also took 8 margin samples and only found "moderate dysplasia", which is not uncommon in any person. For example, a sample taken anywhere from a smoker's mouth would produce this from the chemicals inhaled. This means it's not a normal happy-go-lucky cell, but it's not cancerous either. Translation: we have clean margins!..."

Lynn, your comments on dysplasia concern me since this was included in my post-surgery follow-up. The doctor didn't seem worried about it, and I used his example in the quote above. Are there different types of dysplasia?

Regarding brachytherapy - I spoke to a woman with an identical situation to mine, except it occured a while back (years). She had the same "brachytherapy", but called it something else. It's curious how the name has evolved and why. I suppose that's a question for Dr. Busse tomorrow.

John and Dani - the doctors told me I'd "recover" two weeks after radiation stopped. After reading some of the discussion board comments, and speaking to my social worker, it appears the recovery is more like 4 weeks. What are your (or anyone's) thoughts on how I'll feel post week 1, 2, 3 and 4 (pretending I don't have brachey messing things up)?

Sabrina

Sabrina,

I felt great 2 weeks after radiation (9 weeks) and went back to work and was eating fried chicken! About 8 weeks after that the defecation hit the rotary oscillator! I got so fatigued and started losing weight even though I was eating and doing light excercise. It lasted about 10 weeks and I am fine again. I have just about the same energy level as before radiation/chemo and could probably ride the bike 10+ miles a day right now.

Ed

Sabrina,

My mom started to feel like a human again after 2 weeks. The last week of radiation and the first week after were definately the toughest to endure but after two weeks she started to seem like her old self. Keep in mind you have your age on your side so you will probably recooperate much quicker. My mom was still walking on the beach daily (she lives in Malibu) and trying to do as much as she possibly could all through radiation. She never missed a radiation session and had two chemo sessions even when the darn machine broke down she would wait until they would fix it. Her doctor took her off work until June because he wants to her to be able to heal and feel somewhat normal and as some people say going back prematurely its hard to get off work again and reopen your disability claim. She doesn't have nearly as much energy as she used too but slowly that too is coming back. My mom still can't put on weight no matter what she eats so with time I'm sure that will happen too. She wants to gain about 10 pounds she hasn't been thin since she was in highschool. Now my mom is hiking 3 miles a day and she also has a 13 year old son that she has to spend lots of time with. She has no problem taking care of my 7 month old baby girl either so its really not that bad. She has her old smile and laugh back too and funny thing after radiation her speech seems better than before.

I also have concerns with Lynn's comments on dysplacia as my mom has been battling some form of that for almost 10 years....

I'm sure you will have a very speedy recovery. My moms mouth was so torn up after the second week that she never thought she would make it through it but she did and looking back now it was just a short time of discomfort. Make sure you use the pain meds they really helped her through it. She was up to four patches at one time and weened herself off of them by 4 weeks post radiation.

You will be in my prayers.
Take Care,
Dani

Dani,

I am glad to hear your mom is re-establishing her "new normal" and doing so well. I can visualize her big smile as she takes her walk along the beach. I can imagine it is early in the morning when the day begins as she marvels at her appreciation of each new day dawning. (sigh) Even seeing the sun rising each day is a spectacular sight for me...I just need a beach!

Ed

Ed

Ed,

Its so funny that you say its in the morning because she takes my little brother to school and drops him off then walks for 3 miles along Zuma Beach and she is not a morning person especially since radiation. She would usually sleep until 10am if it wasn't for my brother Zachary. He keeps her pretty busy. He hates homework and his teachers keep telling my mom that he is not applying himself. He loves video games so she has to keep getting on his case to get out into the sunshine and to concentrate on schoolwork.

I always remind her thats what she gets for calling me up when I turned 21 and telling me that she was not married and she was pregnant.... I told her I should be calling her and telling her that not the reverse. Shes now 56 (still hasn't married Zachary's father but they live together and he has been awesome throughout everything my mom has gone through)with a 13 year old and that takes a lot of her energy away...

Well I really got off the subject. Sorry....I would love to meet you one day Ed. Your life stories are so very interesting. You must have been out of control!

Take Care,
Dani

Shhhhh...don't tell anyone! I did go through a rough early adulthood. I remember coming home one day and my mother had moved out. I plunged into retreat, got into the drug scene and bailed out of society. My parents argued a lot over who I should live with and I just kept running away until they stopped looking for me. I have pretty much been on my own since around 15-16 and I certainly learned from the school of hard knocks. It took a few significant events to get me back on track. I have no regrets other than not taking my mother back to Japan when she was alive. I had an enormous feeling of guilt when the plane landed and I had her tucked under my arm in an urn. I was quite ashamed to realize I had made plenty of money and could have easily afforded to take her to Japan once a year for the past 15 years but my selfishness didn't allow it. When she was diagnosed terminal in March of 2000 I pretty much put my life on hold and took care of her 24-7. It was very stressful but I could not see putting her in a nursing home. She had multiple brain mets and was riddled with mets from ovarian cancer. Her 4 weeks lasted for 9 months and I still haven't found a regular job.

Ed

Thanks for the words of support. I don't know if it's the new "diet" the nutritionist put me on, the IB Proffin, or "talking" to everyone here, but I feel awesome! My mouth continues to fall apart, but the rest of my problems seemed to reverse this week. Strange? The rash retreated from my neck, and is now only on my face. The dry spots aren't as bad. My energy level is up (work out 2 days this week! - a big difference from crying to walk to the bathroom).

You guys have cheered me up so much this week. I have a BIG feeling it has to do with that. SO thanks for everything (again).

And Ed - you sound like a person with some amazing experiences. I'm so glad you put your life back on track and are helping so many different people.

Dani - If your mom ever needs a roomate in Malibu, it would be difficult decision, but I might be swayed to move there.

<written from the record hitting town of Boston. Coldest winter and rainiest April EVER.>

Sabrina

Sabrina