Hi,

I'm new to this site and new to writing in any kind of forum. I'm also new to dealing with cancer. About 7 weeks ago I noticed a lump on my neck. I thought it was a swollen gland from a cold, but it got a little bigger and wasn't going away. I went in and got it checked. From there, it went a) pretty sure it's a cyst, but lets get an ultrasound to find out for sure, b) ultrasound wasn't conclusive, lets get a CT and see an ENT specialist, c) ENT is 99.9% positive it's a certain type of cyst guys my age get, but thinks we should remove it because these kind of cysts can become malignant over time, d) removed the cyst on 4/27/05 and was told that it was not a cystm but a lymph node and that it was cancerous, e) had CT done from the waist up and nothing was found.

The ENT then told me that we needed to stage this thing and that the recommended procedure was a neck dissection, remove my right side tonnsil, remove my adnoids, and do a biopsy on the base of my tongue. I had this done on May 5th. The result was I'm at Stage III (T2N2bM0). This week I'll learn more about the treatment plan which will consist of chemo and radiation.

Not that I imagine there is a good place to have it, but having cancer in the base of the tongue doesn't seem to be very "lucky". I'm trying hard not to get too far ahead of myself, but frankly, I'm pretty overwhelmed and frightened about the future.

I'm happily married and have 3 boys, ages 13, 11, and 4.

Hi Zap,
I am glad that you found us. The pre-treatment phase can be pretty frightening. For most of us it was the worst time. I took anti-anxiety meds myself. I also made out advanced directives, placed my assets in a living trust and gave my wife power of attorney which, thank God, I didn't need to use (she did have to access my bank account to pay the bills for a while when I was really beat up).

You will feel better once they have a definitive treatment plan. They should be giving you a PET scan as well and a PET/CT would be even better. If you have access to a comprehensive cancer center, I would switch over there immediately. CT's are more commonly used for treatment planning. MRI's are far more effective for diagnosing soft tissues.

In Minnessota you have the Mayo clinic cancer center and UofM comprehensive cancer center. Get the best standard of care you can.

Oh how familiar does this sound. The major difference being that I was not willing to allow anyone to cut on Harry until we were absolutely sure what we were dealing with.

It is strange looking back to when we started this journey. There were 2 very distinct moments but I guess I really didn't feel like life changed forever until that first night I spent alone when he went into the hospital to begin his treatments.

To be honest, we both continue to struggle with the issue of our "new and forever changed" life. I cannot tell you that we will ever really deal with it. We will find a way to adjust I am sure but I suspect, as has been the case so far, that we will never really be able to live comfortably in our new skin.

I remember telling a friend of mine after dx and before tx began that I could not do this. And that I was scared to death that Harry would not want to go through with the txs after the docs gave us the run down of what the txs were like. About 6 weeks later she reminded me of what I had said and I was still thinking and then she said "You're doing it!" I had not thought of it that way but I guess I can do it. So can Harry and we are doing it together.

When we got home after the initial meeting with the medical oncologist Harry had already decided that he wasn't going to do the txs. I pushed and pushed and I will tell you that I could not be prouder if I tried. He has taken the drugs and rad very very hard and has managed to perservere. That takes guts and I will always admire that in him.

Your road can be long and hard. I know people told me this same thing when I first came here and they were right. But they also kept telling me that we can and will get through this just as they all have. And so far we are making it, not without scars of course, but we are still here fighting.

I guess what I am trying to say is that it took a long time for me to adjust to the "one day at a time" life that we now are forced to live. But I got there. Harry has adjusted differently as the patient. There is much of this that I hope he just simply won't remember. But I suspect that once he gets back on his feet that the time will come as he struggles to define his life under these new terms. We have never been closer and yet we are more seperate in our daily experiences than we have ever been.

I look at life like this... If I am lucky enough to get out of bed in the morning and I make it to the darkness then the day was a success. It is all I can do. But struggle you will. I found comfort and help here in this forum and I believe that you will also.

Take Gary's advice... MAjor Cancer Center... and think and ask and don't always take the first explanations. If you have questions, I certainly am not the one to answer :-) but there are a lot of people here with various experiences who have given me more than I could have ever asked for.

I don't know how much help this really was but just know that you have started right by being here.

Welcome.

Cindy

Zap-
You've found the right place to start. It's a long road to travel but you've got three boys and a loving wife to walk the road with you and they are worth the fight! It's scary to look ahead and overwhelming but the best advice is be prepared and read as much as you can now about treatment and procedures. Take someone with you to take notes and be your second ears. And come here with your questions. Show your wife this site too. Caregivers on this site have some great advice and she'll need the support. Good luck to you! - Kris

Dear Zap,
I myself am new to this site and it has been a great source of information to me. I am the wife of a cancer patient. Stage IV base of tongue T4n2cM0. He just started treatment 2 weeks ago at the University of Michigan. So far he seems to be doing okay and we are also scared but we are just taking it one day at a time. The support from the people you get on this website is wonderful. God bless you and your family and hang in there.
Sincerely,
Virginia
wife to Doug age 47, children 17 and 13years of age

Thanks everyone for the quick responses.

When I read some of the forum messages last night I was struck by how many people said go to a comprehensive cancer center. I suppose the reasons are the obvious ones; center focused only on cancer and will have the most diverse/cross-disciplined staff to help. Is there more behind the recommendation? I'm currently going to my health clinic and have been impressed with the ENT. My next appointment is with a Radiology Therapist who will layout my treatment plan. I was surprised that it wasn't going to be an Oncologist. When I asked the nurse about this she said that typically the ENT is the lead and support is brought in as needed. The Radiology Therapist's job is to know where the science is at and recommend the procedure. I certainly hope that there isn't some odd turf war over who runs the show from the medical side. Any comments would be welcomed.

In any case, I plan on getting a second opinion and finding a cancer center. Now seems like the right time as I'll be needing a few weeks to recover from my surgery.

All the best.

Tim

First off, a cancer center or comprehensive cancer center will have a coordinated team of doctors which is essential.

Secondly, they have access to the state of the art treatment techniques and clinical trials as well.

Thirdly, your odds of survival are greatest at a CC or CCC, hands down. You REALLY want people who deal with this every day. This is an unforgiving disease and screwups in treatment or diagnosis can cost you your life. We have sadly seen this many times here.

Your team, minimally, should consist of:

1. Oncologist - who coordinates meds, lab tests, scans and chemotherapy. They will typically be your primary care physician as well and will also coordinate your pain meds, etc.
2. Radiation Oncologist - who evaluates, plans and executes radiation therapy. They also order scans. By the way, a radiation therapist is the technician who actually runs the machine.
3. ENT or Head & Neck Surgeon - who evaluates, diagnoses, biopsies, operates if necessary, etc. They also do the followup exams. They rarely order scans.
4. Nutritionist - should be obvious.
5. Dental oncologist - Sometimes teeth need to be pulled prior to treatment.
There are many others behind the scenes, Radiologists reading the scans, technicians, etc. I estimated at one time there were about 50 persons involved in my treatment.

Hello ZAP, several things we have in common; same state (we're neighbors!), same cancer, same age kids as mine when I was diagnosed. The above advice is great, you have Mayo within reach if you can arrange it. Mayo is ranked number 6 nationally (pretty hard to beat) That is not to say you have poor care where you are but it is all about the numbers. What ever you do hit this cancer with everything you can. The road is a bit bumpy but you can do it. Feel free to contact me privately if you need or want to. Ask questions here anytime.
Take care.

Hi ZAP, Mark mentions the Mayo Clinics. I had oral cancer in my lower Jaw and on the tip of my tongue. I was refered to the Mayo Clinic in Scottsdale, Aarizona. \After the Mayo team evaluated my cancer they made a plan of action, and kept myself and family informed of every move they made. I had surgery in January 2003 at the Mayo Hospital in Phoenix. It lasted ten hours. The team of doctors kept my husband informed of what was taking place every hour. They did an excellent job. I was hospitalized for almost three weeks and under constant care. While I was there I learned about the Mayo Drs. They head Dr. traveles the world and lectures about Oral Surgery. They are very well known. When I finally returned to Tucson, my Drs. couldn't believe what a fine job I had at the Mayo. They said I got a "Hollywood Job'" . Now I am well past the two year mark and am Cancer free. If you have to have that type of surgery you might as well go to the best. Best of Luck

Hacklene

Hi ZAP, Mark mentions the Mayo Clinics. I had oral cancer in my lower Jaw and on the tip of my tongue. I was refered to the Mayo Clinic in Scottsdale, Aarizona. \After the Mayo team evaluated my cancer they made a plan of action, and kept myself and family informed of every move they made. I had surgery in January 2003 at the Mayo Hospital in Phoenix. It lasted ten hours. The team of doctors kept my husband informed of what was taking place every hour. They did an excellent job. I was hospitalized for almost three weeks and under constant care. While I was there I learned about the Mayo Drs. They head Dr. traveles the world and lectures about Oral Surgery. They are very well known. When I finally returned to Tucson, my Drs. couldn't believe what a fine job I had at the Mayo. They said I got a "Hollywood Job'" . Now I am well past the two year mark and am Cancer free. If you have to have that type of surgery you might as well go to the best. Best of Luck

Hacklene