Hello, I am Mickey and live in USA Tennessee. Age 55..
I have Base Of Tongue SCC.

Noticed large lymph node around May 22 2012, waited about 2 weeks and did not go down.

Went to ENT June 6, did needle Biopsy- very worried that he did this on the first visit (glad he did though) 1 week later, results negative, I was feeling better. He said we must still look, node is not going down.

CT scan July 9 - results Negative. He said we have to take the lymph node (left side neck) out and test it. (6 cm) He said he did see a something on left base of tongue at this visit (or before?)..

Deep Neck Dissection (sic) July 26, then, few days later..
DX - SSC - T1N2aM0

Next, PET/CAT scan Aug 7, - Better news, Base of Tongue Left side below the tonsils, no evidence of spread to any other organ or node that can be seen...

Aug 14, endoscopy, removed BOT spot is about size of pencil eraser, removed about the size of a dime... did not remove left tonsil, as it was below that, (some ulcer on esophagus, checked, not cancer).

Now I have seen the main OC and the OC Radiation doctors.
Main OC said I would receive small doses of chemo first of each week of radiation. Radiation OC said I would receive 35 IMRT treatments, to begin Sept. 5.

OC Radiation doctor said he may not use full strength on the Right side and it MAY save the main salivary gland on the right, but no guarantees.

They all say, and I have read that the radiation is TUFF , but he did say that some can drive and work all through out the TX.
Should I expect to not be able to work, around the 3 or 4th week as some of the postings indicate?

I am a Christian and believe the Lord will cure through the doctor's treatment.

I have a lovely wife that is very worried about the destruction of the salivary glands and the taste buds, but I say what ever it takes!

Hi there there are lots of BOT people here they'll be along to welcome you. For most of this type of cancer the treatmnrs are relatively similar - most of us do som level of radiation and chemo - an the postngs are accurate - around week 3- hangs become very uncomfortable - I was blessed in that I only really suffered at the end the two weeks following radiation are the worst. As its cumulative. I hoe you are being seen at. Ccc - it's important to get the best treatment possible. I was per all able o drive back and forth to rads daily right to the end, but mt drive was only 20-30 minutes and i Didn't on chemo days - because my hospital kept me in for 24 hrs so I would get dropped off and picked up. I had th three arge doses as opposed to six small. Best of luck you'll get through it. It's doable but definitely hard.

Welcome to OCF! Im very glad you have found this site to help you. We can offer you lots of factual info and moral support.

First, everyone is different. Some will sail right thru with relatively few problems while others will struggle from day one. I was one of the strugglers. I stopped driving after about the first week as I was taking pain meds and had a long commute and didnt trust myself to be safe on the highways.

Seek out friends and family who offer their help. Write down every single person's name and number and tell them you will let them know what they can do when the time comes. The time may come where your wife needs a hand, even to pick up prescriptions from the pharmacy or cook dinner. Caregivers often forget to take care of themselves and can also get run down so it might be helpful for someone to get her out of the house for a couple hours. Battling cancer is not the time to worry about being proud, many people want to help but dont know what to do.

Nutrition will play a huge role in how easily you get thru this. Right now....eat!!!! Have all your favorites and dont worry about calories. Going thru treatments you must get a minimum of 2500 calories and 48 oz of water every single day. Dont think you can skimp and make it up the next day, it wont happen. That will put you on a fast track to becoming dehydrated, malnourished and you will wind up in the hospital feeling awful. I am not trying to scare you, just making sure you understand how important this is. If you can get more in thats even better, it will help you have an easier time of it. There are many items that will help you like ensure and boost. Swallowing every single day is also imperative.

The place you are being treated can make all the difference in the world. If you have not sought out a second opinion you really should. A large cancer center is where you want to be treated. This is even more important than nutrition. Oral cancer is not always one of the more well known cancers. A large cancer center will have a team that will meet and discuss your individual case and work together to get you thru the specific NCI guidelines.

Cancer Centers


Best wishes with everything!

Mickey,

See my Signature Line below. I would be happy to discuss anything with you. There is a lot of info that can/should be passed on to make your journey as best as is possible.

Wecome to our home Mickey. It depends on your outlook on things as they happen. Have a good positive attitude, faith in the Lord and keep the Angels with you. I have been thru rads, chemo, rad seed inplants in my tongue while in a coma along with many surgeries. Was given up for dead and readied to be put in extended care because the coma didn;t end as it should and I was out a few days longer then planned. But I knew I would make it and did. I drove myself to all of my treatments alone and survived. I still do everything myself but am too harheaded to ask for help. You will be fine with the attitude you seem to have. Good luck guy.

Hi Mickey,
My husband was dx BOT right side last July. We finished tx at the end of October. Prior to his 60 radiation tx he had 2 cycles 3 weeks apart of Cistplatin, Taxotere and 5FU. They hit him very hard with all they had and we just pray through the days now that it will stay gone!
Kevin didn't work from the time of dx, but he works in Alaska on the Artic Slope so it was a bit far away from New York to continue. He went back January 5, 2012. You can see his dx in my signature.
You most likely start feeling pretty punky after a few weeks of radiation, but, as Christine says, we are all different.
You really do need to eat like crazy while you can. Kevin lost 56 pounds. He did have the yucky mucous, then the dry mouth and everything tasting bad, but these days he eats pretty much what he wants and can taste almost everything. Things taste a little off though, but he's eating. All this after not quite a year so we'll take it!!
If your wife would like to speak to a caregiver, she is welcome to PM me.
Best of luck to you as you begin your journey. We are here for you both. It will be a rough ride, but there really is a light at the end of the tunnel!!
Did they test for HPV? If not, ask them to. It's good to know as HPV dx seems to have a better outcome. Just good to know. Also, if it is HPV, be sure your wife is diligent about her PAP smears. I just had to have a hysterectomy because of cervical HPV.
Keep in touch!!
Blessings,
Kathy

Thank you all so much. The cancer clinic I go to is checking for the HPV status, should know by end of week or at least my first chemo, 9/4 (and rad TX).
The West Clinic in Memphis does seem to be a good cc and has come recommend by several.
My wife is viewing this site and one other...

The hospital is doing the radiation and I have a team of doctors there and then the cc is doing everything else, and the head director is my doctor. I feel I should not waste one day even for a 2nd opinion, but I may be wrong. But the TX seems pretty standard for this type cancer.

I will be posting more later on and I REALLY do appreciate all of you and this great site...

Thanks, and God Bless.

When I say cancer center it does NOT mean its just any cancer center. Im talking specifically about a comprehensive cancer center where its a team based approach. Many for profit cancer treatment facilities use the words cancer center when they really are not the specialists they claim to be. Im sorry, the facility you mentioned is not on the cancer center list.

A recommendation from a friend or relative may not be as good as the places in the list I gave you. That list is made up of the top cancer hospitals in the country. They follow the NCI guidelines and have protocols and go by the book. A friend or relative who was treated someplace may refer you to them simply because they liked their doctors. This could be a fatal mistake! Not all facilities that treat oral cancer come with years of experience and top notch doctors.

Please carefully study the link in my previous post and take some time to read it and also learn from the following link.

Im always trying to watch out for whats in the patients best interests. Best wishes!!!!

cancercenters.gov

Just read your post - hope it all goes well and you sound as though you're up for the difficult times ahead.
I had cancer on the base of my tongue.Had my surgery in July 2011 and then 6 weeks of radiation (30 sessions) and chemotherapy (6 sessions).I've since had another 18 weeks of chemo - but that's another story.
We are all told that our own reaction to these treatments is all different.Personally, I was ok to drive and generally 'function' for the first two weeks or so of my radiotherapy - though I was off sick from work due to all the medication I was taking.
Gradually, the side-effects of the radiotherapy began to kick-in and I felt that these were worse than the chemo side-effects for me.My taste sensation went fairly quickly,as did my appetite and I relied on my PEG feeding tube.I felt as though my throat was being slowly burned by the radiotherapy and swallowing anything (even saliva/water) became a bit of an ordeal - though I did manage to keep it up.
I produced a lot of mucus in my mouth and throat which I constantly spat out and this continued at it's worst throughout the night - I'd say for about 2 weeks,a month after treatment had finished, I was sleeping in 30 minute slots.
It took me three and half months before I began to eat normally again after slowly graduating from liquid food and mush as my throat recovered.
It is tough, very tough, but doable.
Good luck.

Mickey

It's a good sign that you caught your BOT tumor so early. The majority of BOT tumors are T3 by the time they are DX. You have gotten great advice in the prior posts which I will not repeat.
I do urge you to get a blood test right now to get your exact thyroid hormone level number before starting radiation. Even though the classic textbooks recommend it, for some reasons many clinics do not do it, instead they rely upon post radiation blood work. That approach is worthless since the so called normal range of TSH levels is so large as to be meaningless. Simply put, you will want your TSH levels to be the same as they were before and there is no way to ensure that if you do not know what your current TSH level is.
I was fortunate to have my exact number (in the low 1s) since the "normal range" can be up to 5 according to the labs. (Although most endocrinologists who went to medical school in the 21st century agree that 3 is the maximum - the labs and older doctors use the 20th century values)
Misdiagnosed thryoid hormone deficiency is one of the major causes of lingering post radiation fatigue.
Keep the Faith
Charm