Hi everyone.

I was Dxed with cancer on the left side of my tongue on 5/22/07 (SCC). A PET scan was negative for any spreading. On 6/13/07 the doctor removed about 25% of my tongue and replaced it with muscle, skin, etc. from my arm.

They also removed the lymph nodes on the left side of my neck. Regretfully, one was positive with a small tumor.

Tomorrow, 7/9/07, I meet with my oncologist for the 1st time. I'm treating at the Barret Center at the University of Cincinnati Hospital. I have several concerns/questions, and would really appreciate any advice.

1) They want to do radiation and chemo. What chemo protocols have the highest sucess rates for SCC?

2) How quickly should we peoceed with radiation/chemo after surgery? My doc sz 3 weeks, but they move so slow, when I was eligible, they set an appointment out several weeks. HOW CAN I GET THEM TO START TREATMENT ASAP??

3) My doc sz I have a better than 2/3 shot at making it through this. I don't know if I can beleive him because that's not what I have read in my books for Stage III cancer.

4) How to stay positive? I feel, much of the time, like a "dead man walking". I know thatmy emotions/attitudes can make a difference in the final outcome, but have difficulty staying positive. Any advice?

5) I have read that alcohol and tobacco play a hand in this disease. I am wondering if the 5 year survival stats are skewed to the low side because many of the patients engage in these addictions even after they are diagnosed. In other words, has any seen/heard of any controlled studies where survivial rates are charted for people who quit smoking/drinking v. those that don't.

Thanks very much for you help.

Hello Mike

I had surgery 5-17-07. MO surgeon said 3 weeks to start treatment.

RO said maybe 4 wks. (All healed)

No chemo appointment until 6-25-07. Who said I did not need chemo.

First rad. tx 7-5-07. On 6-30-07, I had two bumps appear. I called RO on 7-2-07. They said they would look at them at my first appointment on 7-5-07.

RO looked at the 2 bumps. Said they were new tumors. They boosted radiation dose on the two tumors. Now I am waiting to get chemo asap.

Today I got a new bump and all three are growing swiftly and it is freaking me out!

I AM NOT A DOCTOR. But I would push for rad & chemo at the three weeks.

Do not get caught up in the percentages of survival. It is unneeded worry, no two people react the same and there are two many variables.

Staying positive- Do everything you are told, ask questions and pray. Some recommend meds if needed.

Well, that's about 3 1/2 answers.

Good Luck, Petey

Lots of good questions, Mike. You will, no doubt, get lots of different answers.
As to the one about waiting so long for chemo\rad., it's because you have to heal from surgery before they will start the next round.
There is a ton of info on different chemo protocols and many times it boils down to where you are being treated and the preference there. I think learning about the potential side effects of diferent forms of chemo would be important to you.Stop reading statistics- you are an individual-not a number. As to staying positive, some folks just get into the mindset of "I'm gonna beat this thing" and others need some help in the form of anti-anxiety meds, etc. We are all different in that regard. And you are correct, having a good outlook will serve you well during the next months. Good luck, Amy in the Ozarks

Amy & Petey:

Thank you very much for your replies. I will check out the remainder of this site for chemo protocol issues.

Petey, I am sorry to hear of the new tumors; at least they got picked up early and can be taken care of.

Mike,

Judging by the questions you are asking now, you seem to have already become acquainted with your cancer and that's a good thing. Keep on top of the learning curve and you will at least eliminate many unknowns and the associated fears.

I will try to answer your questions but keep in mind that I am not a doctor, just a cancer war vet.

Re chemos: the standard bearer seems to be Cisplatin but it can have a nasty side effect...permanent high frequency hearing loss. Some receive it every 3 weeks during Tx (3 times) while others get it once a week during the rad. Some also receive Erbitux to possibly lessen the loss of saliva and still others receive 5FU which can shrink the tumor. Some receive combinations.

Keep in mind that the chemo isn't thought of as a killer of our cancer but as an aid to make the cancer cells more susceptible to the killing effects of the rad.

When to start chemorad should be left up to your docs, period.

Re odds: Forget them. I was told 50%; then 60%; then 70%; then 80-90%. ALL before I had even decided on who would treat me and how I was going to be treated and I was/is a Stage IV. All that should matter to you is DO I survive.

I have always thought to myself that the mental stress that we all go through is 50% of our battle yet very little attention is thrown that way.

Again stay on top of the learning curve.

P.S. You are not a dead man walking, but if you did smoke before, I wouldn't touch the stuff ever again.

Mike,

I misposted and was timed out:

Erbitux is not the drug some receive for saving saliva. That drug is amifostine. Erbitux is also used to shrink the tumors.

Told you I wasn't a doctor.

Erbitux is a monoclonal antibody. It is seldom used as a monotherapy since it does not directly kill malignant cells. It blocks a protein messenger that tells the malignant cells to duplicate, buying time for other chemo or rad to do the heavy lifting. When used as a monotherapy it is a time buyer primarily. See http://www.oralcancerfoundation.org/treatment/targeted_therapies.htm

Cisplatin side effects, such as hearing loss are on the uncommon side. It is a nasty, tough, SOB of a chemo treatment but used in conjunction with radiation it can improve survival odds by as much as 13%. People developing an early sensitivity to Cisplatin have been switched to Carboplatin, it's less toxic brother. The side effects can be managed however. It is vitally important to stay hydrated, especially if you are getting Cisplatin ct

Hi All:

Thanks very much for your replies. I met with my Oncologist yesterday, and he wants to do 6 weeks of radiation therapy with 3 rounds of Cisplatin (once every three weeks). He says that it should boost radiation efficacy by 20%....

Bad news: I found out that the margins on the tumor removal were not clean. The freeze slides done in operation were negative, but pathology report came back positive. Doc sz this is microscopic; radiation/chemo has 80% liklihood of knocking this out.

My question: Why don't they go back in and cut some more of the tissue???? Has any one heard of this?

Thanks again,

Mike

Mike, same situation for me. The boat load of rad plus chemo will kill anything left. I have been clear and feeling great for more than five years, so just get on with the treatment and don't worry. Want to know how effective that chemo is? I started competititve swimming at age 8 and picked up some ribbons and also the athlete's foot fungus, which was with me for the next 40 years -- until the chemo killed it.

Don't mess with percentages. They can be so easily manipulated, and every patient is different. The results also take into consideration the patient who continues to drink and/or smoke during treatment, the patient with other underlying illness. and many other variables. 80% means nothing. You stand a good chance of having the same results I had, and I sincerely hope that you do. Good luck!

Mike, The same thing happened to me--when my tonsils were removed (not knowing there was a tumor before surgery, the doctor removed as much as he could when he discovered it), the hospital reported clean margins. They said I would only need radiation on one side, no problem. When I went for a second opinion at Dana Farber they reported the margins were NOT clear. So I went from radiation on one side to full neck radiation, chemotherapy, a feeding tube, and out of work for six months. They said what was left behind was microscopic and the cisplatin should clear it out. A second surgery would have been a MAJOR deal, so they thought it was not worth it. Thank goodness for second opinions. Staying with the first hospital could have been a devastating mistake. Good luck to you!

Girlcat & Joanna:

Thank you for your input. I hopefully start chemo/rad. next monday. I still have PEG tube in so I hope to keep my nutritional needs met.

JOANNA: You bring up a point that I would like to discuss/research more: Since this disease is heavily linked to addictive behaviors (drinking and tobacco use), how much of the stats are skewed because people are unable/unwilling to quit the addictions after diagnosis. It just seems to me that this would play a huge role in the stats that I read.

Please let me have anyone thoughts on this issue, and any empirical evidence they may have come across.

Good Luck To All & Please Live Each Day With Dignity!

Mike

Mike, when I was getting rad, the techs told me about two other head and neck patients who smoked out in the garage until time for their rad. Techs were complaining that they were wasting treatment time on these guys. If there were two at that one hospital, there must be hundreds of thousands more who are what is termed "non-compliant." How you would get this information, though, I cannot imagine. I only learned about those two guys because the techs and I got to be quite friendly.

There are intangibles, also. For example, I was absolutely sure that I would survive and live to be a he**-on-wheels old lady. Just last Friday my ENT recalled my telling him that going in, and said he believes people like me have a better chance of overall successful treatment.

Long ago, in a distant galaxy, I was a math major and intrigued by statistics and probability. I still am, but see no way to collect accurate data about all of this. More power to you, Mike, if you can do it.

Bottom line, if you can manage to stay on the green side of the grass, I don't think the odds you might have beaten to get there are as important as the fact that you are still here.

Joanna:

Thank you for your input...I too was a student of statistics, and know how amenable they are to manipulation.

I am curious about the survival stats b/c I (and I suspect many others) get depressed by them. I know I need to keep on the positive side...I can get diverted at times by such things.

Anyways, I go in a few minutes to meet the radioligist and get a mask, etc. Hope to start TX next monday.

Take Care!

"My question: Why don't they go back in and cut some more of the tissue???? Has any one heard of this?"

Mike, the same thing happened to me with margins and they DID go back and cut out more. This was because at the time they weren't sure I would need radiation.In the second surgery, the additional tissue showed no cancer so basically there just had been no margins the first time but probably no cancer remained. Anyway, I ended up having chemo and rad because I had an aggressive tumor in other ways. But I'm also glad I did because my ENT, who is a very good doctor, said he was pretty sure he had removed more tissue all along the spot where the margin was not clean but it sounded like there was some possibility in his mind that in the second surgery, he hadn't captured all of that margin.

As for mortality statistics, coming from another person with lost of training in research and stats, and I think it would be hard to get good data on people who continue to smoke and drink versus those who don't in part because many people wouldn't be honest about reporting it. But lots of the stats that are out there are also not representative in other ways (for example, they are from a time when adding chemo to rad wasn't standard therapy and as you've already heard, that addition causes a large improvement in outcomes). Listen to what your doctor says about your chances and don't pay too much attention to the overall survival stats out there.

Nelie

Mike,

Never mind the Statistics, the only one you want to watch is your own... Everyone of us goes through this differently.

I started with Stage I with tongue in 2003 and went to Stage IV in neck & lymph node 2005. I had Chemo and Rads after surgery on neck 2005 & 2006. I finished Jan. 2006. I think I am doing OK. I do have a few side effects but we all do to some degree. You learn how to work with them.

My point is take one day and one treatment at a time. There will be days it will seem like hell and others will be OK. It will take time for you to heal. Just know we are here and we will help you walk through it. OK?
TODAY IS A GOOD DAY BECAUSE YOU ARE GETTING HELP TO FIGHT YOUR CANCER.

Take care,
Diane