Hello Paul

I hope you get some good news from your meetings with the doctors. Do your best, then you have to let it be. Don't let yourself get drained by these traumatic times that your family are going through. Do remember that all our lives are transient, so keep an even keel.

Best wishes
Vinod :coffee:

Paul, wow you have been a busy man. I agree with the others tho, calm down, and take one day at a time. As for insurances they all differ. They ususally do not make you PAY the day of the surgery, you are billed for it. I will tell you this my surgery was 87,000.00 dollars. That was just the surgery. THat wasn't the blood work, the anistethologist{however you spell that}, any of the med's, the doctor's, just the surgery. My total hospital bill is almost 150,000,000.dollars..Thank the lord I have insurance. If the place you are going to doesn't accept his insurance, then with mine I only have to pay the inital visit then my insurance company jumps in. I wish you well in the weeks ahead of you..Feel free to let it out here, that is what we are for...Keep us informed, always vicki lynn

Wednesday August 11th, 2004, My father had an x-ray of the stomach region because our ENT suspects some cancerous cells in the stomach as well. After the x-rays were performed, we drove to Boston to the Dana Farber Cancer Institute at Harvard Medical Center. Doctor Posner did a couple of tests, and then sat down with us and told us that the tumor is removable and more importantly, the tumor has not reached the bone. He also said the lymph nodes/glands in the neck are very small and not life threatening. We have to go meet the surgeon, Dr. Norris, tomorrow, August 13th (uh oh, thats Friday the 13th ). Dr. Posner, the head and neck cancer specialist at Dana Farber, suggests that we have the tumor removed first and then perform the reconstructive surgery to bring his appearance to somewhat normal. Afterwards, it will take about 4-5 weeks for him to fully recover. Once my father heals, he will begin radiation. Dr. Posner says he will need between 4-6 weeks of radiation, 5 days a week, and 45 minutes each visit. Does this seem normal? Will my father loose his hair from radiation? Afterwards, he will have to be under close monitor to spot any cancerous cells and catch them before they spread. The doctor also suggests we also get a thorough dental examination done. He said the radiation will cause dryness in the mouth and cavity will build up and deteoriate his teeth. Therefore, we have to have a dentist check all his teeth and remove any weak teeth present. The doctor also said, after surgery we may have to have a custom teeth tray built so that he may perform flouride treatment each morning by himself. This means simply placing some flouride paste onto the teeth tray and placing the tray in the mouth each morning for 5 minutes. This will help the teeth stay strong. Also, the doctor told us that the Dana Farber Cancer Institute has a special post radiation therapy, a technology unknown to many smaller hospitals, that will help save the saliva glands and keep the mouth somewhat wet. Or else, if we have the radiation performed at a local smaller hospital, there may be a good chance that his mouth will constantly experience dryness and he would have to carry a water bottle around at all times. That is as much as we know so far. I will keep you folks informed of any changes or advancements. Thanks for all your support. (Vicki lynn, I think you meant $150,000....and not $150,000,000 ! Or did you? ). Dr. Vinod K Joshi, I do understand that all lives are transient but he has so much more to live for. He has only done good his whole life. He has done so much for me and the family, and I have not done enough in exchange to let this happen to him. The day after he found out about his biopsy, he cried """I wont see my son's graduation or their weddings.""" It hurts, and in times like these, ones emotions take over his/her body. I can't control what I feel. Yes I can put icing on the cake and make it look sweet and cool from the outside, but inside things are just stirring up. I guess the only way to keep my mind clean is to be occupied with something or someone at all times. Thanks a million for the support and knowledge Dr. Joshi.

P.S. - My father gave a saliva sample to a doctor at the Dana Farber Cancer Institute for testing. The doctor was doing a test to see if any correlation may be determined between the saliva and the cancer in patients. Also to see if it has any play in how cancer roots.

Paul, you have a aswume group of doctors there. Everything that they told you was the way it was done with me. I also had 45 treatments of radiation, 5 days a week in 1999/00, just like your father. The cancer then came back in july 2003 i then had radiation implants, they thought they could kill the tiny little cancer cell that was on the floor of my mouth. That was in October 03. Instead it angered it and it spread to the jaw. I then had to have the neck dissection in Feb. 04. I had no other choice. I was given 3 months to live without the surgery or 5 to 10 years with it. Perhaps even longer. I also didn't have to have any teeth removed in the beginning because my teeth were in perfect shape, not a single cavity. After radiation, even wearing the night gards with the flouride, my teeth were in sad shape. It was hard tho for me to wear them for my gums eventually got so swollen that I couldn't get them in. I pray that your father has better luck with them than I did. Paul I pray for your father and the family every day and night. My heart goes out to you. It breaks my heart what this horrible disease does to a family. My precious mother was taken at the age of 42 with cancer. There were 4 of us kids. It devastated our family. My daddy only lived another year after moma passed away. He was 49, the family all swear it was from a broken heart. I to this day believe that. You make all the memories that you can. Say everything you want to say and say I LOVE YOU every chance you get. Tho it sounds like you already do that, you are a wonderful son, God Bless You, Paul. AS far as the cost I meant what I wrote. My insurance rep, JoAnne says I have a million dollar mouth. Remember that this is the 3rd time I have had THE DEMON-CANCER. So I have been living in Doctor's offices for 15 years...It is a shame too because tho they did a great job of saving my life, For a million dollars- you would think I could talk, could eat, could swallow, could work. No I cannot...I will continue to pray for your family, Keep us informed, Always Vicki Lynn

Vicki, my deepest condolences go out to your family. I do not mind if my fathers life takes my life...atleast we will go up together. We are a team, the closest a father and son can be. Today we come back from Dana Farber Cancer Institute. We spoke with the surgeon, Dr. Norris, and he said one of the lymph nodes did look inflamed. He also said its very close to the bone. They said we have two options:

Option One (surgery & radiation):
They will perform the surgery to remove the tumor and the reconstructive surgery to make him look normal. He will then recover over a 4-5 week period. After that, he will start radiation for 6 weeks, 5 days a week.

Positives: They will have a better understanding of the extent of the surgery and the tumor is close to the jaw bone so they might not use chemotherapy.

Negatives: Cosmetically he will be unattractive. But I think right now everybody knows what the priority here is. They will be doing a skin transplant from the forearm to rebuild his cheek and partial lip.

Option Two (Radiation & Chemotherapy): They will start and give him high radiation followed by chemotherapy, which will enhance the radiation.

Positives: No incisions would be made.

Negatives: The tumor is very close to the jaw bone so the radiation may take the bone, which would require and even more extensive surgery. People have also told me to stay away from chemo, and I have not heard anything good about it.

We have opted to proceed with Option one, the surgery and radiation. The doctor said it was a stage 3 (he said something like T2 N1?). He said it is curable. I also believe the surgeon had mentioned performing a neck disection during the surgery. My father also gave a urine sample and they believe there was some blood in it. We are still waiting for the still results. What could this mean?

At any rate, we still have another opinion at Memorial Sloan Kettering. We have not stopped the process with any of the other doctors. We cannot let this delay any longer. We should know in a couple of days what the date of the surgery is at Dana Farber.

Also, our current ENT, Dr. Cavalli has a scheduled for a radiation therapy meeting on Monday morning. We then go to the dentist to have his teeth examined. Tuesday is the third opinion at Memorial Sloan Kettering in NYC. Wednesday we meet with our current ENT to see what our options are.

and the saga continues...

One question for Vicky Lynn, what stage were you at when you were diagnosed?

Thanks again for your support. It has really helped me relate to others.

Paul, I am stage 4. My cancer was too close to the jaw bone as well, hence the surgery. As for chemo, I have seen what it does first hand. I do not care for it and I might add I was told that it would have no affect on oral cancer anyway. I am shocked honestly at all the people on this site that have had it...But then I am not a doctor, but all of my doctors are the reason I say what I just said about it. Your father will need you once the surgery is over. It was very hard on me, the worst of all this so far for me. Was the surgery. I hear others say it was the radiation. That was tuff don't get me wrong, but the Surgery was HELL...Please keep us up to date. You are doing a wonderful job I might add. You know more about the surgery than I do. Always, Vicki Lynn

Vicki I am interested in your comment about chemo. I never know whether to be glad or sorry I have not had chemo. On the acor list I have read of people having an awful time during treatment and after effects because of chemo and then in the next breath we read that new evidence suggests chemo with radiation has a good effect.

What is your true opinion of chemo as a long term cancer survivor?

Paul we have all had to make decisions about which path to take. All I can add is that you read around the subject and be as well informed as possible and once having made the decision do not wonder if only we had taken that course instead of this course if things do not pan out as you expect. Investigate the options thoroughly, then make carefully weighed choices and live with them knowing it was the best choice at that moment.

Whilst I know you want to do everything possible to assist your father, do remember that your father is the patient and that he must have a say in these decisions. Final choices must be his not yours. When you have cancer you lose control anyway so any decision that are made should ultimately be made by him not you. Sorry if that sounds harsh, but as someone who has been through this making my own decisions was important to me.

Pauline, I have a very bad opinion of chemo. I pray that I am never faced with it is either chemo or death. I pray that I have to never cross that path. I watched my beautiful moma of 42 years young, struggle with chemo. She had lung cancer, they removed her lung and she was given chemo, she only lived 1 year and 3 months, this was in 1982, it has came a very long way today. It is just the after effects it left on me were sickening. It isn't the cancer that kills, it is the medicines trying to kill the cancer... ALways Vicki Lynn

The problem seems to me to be that in finding a cure some people are in effect guinea pigs until this is perfected as a treatment. There do seem so many conflicting reports about SCC and chemo. Some pages I have read say chemo does not work at all on SCC and others are pushing this double rads/chemo treatment as the latest best bet.

Most of the people on the acor list seem to have lots of long term problems not only from rads, but also from the chemo with many saying the chemo has left worse problems.

I think I can understand your reluctance to like it as a treatment.

I'm sorry about your mum, it must have been awful for you. Vicki my own father had radiotherapy to his neck for leukaemia and Hodgkins - little did I think as a child that some 50 years on I would recive such similar treatment to my neck. It has been awful for my 87 year old mother to witness. When I was prescribed morphine for the burn pain I think she thought they were trying to let me die easily, as my father had increasing injections of it in his last days. My mum reckons that they were experimenting with the rads dosages then as they were unclear as to how much to give. I try to think positively about it that he gave his life so I would have extra time.

I pray you continue to regain your old strengtyh to carry on and enjoy some of life's pleasures again.

Just an update,
I know its been a long time, but I've been really busy trying to help my father. To bring everyone up to date, my father had the surgery performed on September 2nd, 2004. The surgery lasted 9.5 hours. They removed a small corner of the upper right lip, about 7cm in diameter of the right cheek, and half of the lower lip. They did skin grafting from the forearm and reconstructed the cheek portion and then they took tissues from the leg and reconstructed the lower lip. He looked very disfigured coming out of the surgery and I was shocked, in tears, scared, etc... Its been 6 days since the surgery, and he is healing well. He has a feeding tube (G tube) in his stomach, and just yesterday had they started feeding him liquid foods through the mouth. They give him Amoxycodon for pain, tylenol for his headache, and aspirin for general discomfort. Everything is crushed and fed through the the G tube. He has had severe diaria in the last couple of days, but the doctors believe that is from his history of IBD(Inflammatory Bowl Disease). Last night, my father was complaining about a hairy sensation in the mouth, and the nurse looked inside with a flash light and found that there were hairs there. My father became very scared and was restless all night. We, the family and I, make him walk 3-4 times a day around the hospital. The doctors have also requested that he does not go outdoors until he is released from the hospital. Again, the diagnosis took place at Dana Farber Cancer Institute in Boston, and the surgery took place at the affiliate teaching of Harvard Medical School, at Brigham & Womens, which is connected to Dana Farber. Before I forget, there was also a neck dissection performed to remove a few borderline lymph nodes. Dr. Laura Goguen removed the tumor and did the neck disection. Dr. Orgills performed the reconstruction. My father also had a wisdom took ripping through his gums, so the extraction was also performed. Prior to the surgery, my father had his bridge, which consisted of about 6-8 teeth, was removed. Today he says he can't feel anything. Will he ever get his sense of taste back on the reconstructed portion? He has over 100 stitches on the reconstruction portion and the neck combined. They estimate the removal of the stitches sometimes Thursday or Friday, and discharge within a day or so. A nurse will be coming home once a day to check up on him and check his vitals. The Doctors said the surgery did not have any problems and that he is healing very well. The doctor also said he would have to come back for more plastic surgery to take care of the disfiguration. Couple of questions:
What should I do about the hair in the mouth?
Will he regain his sense of touch in the right part of the mouth?
How soon can he start radiation?
Is the sun bad for him?
Will he get infected if he sits outdoors?
Will he be able to put his bridge of teeth back?

I will address any other questions I may have in regards to my fathers health. Thanks and God Bless!

Paul Bless your heart, you are a very very good son. It sounds right and very familar what all your father had done. Like I told you the hairs in the mouth can be lasered out. As far as the sensation in the area that was cut that all depends on how many nerves were cut. I cannot feel my bottom lip doctor says I never will. I cannot feel my neck at all. I had my surgery in Feb. this year. As for teeth, I had all my bottom teeth removed. It will be another year before they can give me implants. Sun is never good for anyone who has been radiated. As far as his radiation goes, that is up to his doctor. But here in the States it is started the week you are released from the hospital. I hope I have helped you some here. The answers I have given to you are by my own experience. I would certainly ask the doctor all of these questions tho. I am sure that you will you have been right on top of things. How are you doing? How are you holding up? Remember that while you are so busy taking care of dad that you don't forget to take care of Paul, Okay? If you want to talk or need a friend just give me a yell...God Bless You and your family. Always Vicki Lynn