Hi,

I am a 39 year old male. Other than what I descibe below, I am very healthy, never smoked, drink a glass of wine a few times a week.

Since year 2000 I have been having lesions, white patches on the left side of my tongue. In 2001 it was diagnosed as carcinoma incitu, and I had it promptly removed...about an inch diameter from the side of my tongue.

Every year since then, the pre-cancerous lesions have come back as dysplasia, leukoplakia or lichen planus. I would have that cut out as well...until 2007 it got to the point that this will go on forever, that no matter how many times I have the lesions and white patches removed, they always came back.

So, in January 2007 I followed the recommendation from my oral surgeon to have a radial forearm flap procedure. It was quite radical, took large area from tongue, and floor of mouth and replaced it with tissue from my forearm, lymph nodes removed from the left side of neck. I somewhat regret the procedure, thinking that it may have been overkill, but was told this would be the end of it, no more yearly surgeries...

Like clockwork, a year later, the white patches came back, this time right where the flap attaches to the top of my tongue and also where it attaches to my gums by my back molar. I had the areas removed and the flap was stretched to cover the area, so no big deal.

Again, in 2009 the white patches and painful bleeding lesions were on the outerside of my molar on my gums, basically surrounding the tooth. I took part in a clinical trial with a drug called erlotinib (to prevent dysplastic cells from turning to cancer). Stopped taking a few months ago as it proved to not have helped and had very bad side effects.

Recently, my latest biopsy showed that I have invasive squamous cell carcinoma. I had CT scans done and the good news is that the cancer is isolated to my gums around my back molar on the left side. The tooth is loose. My oral surgeon is wanting to take out the bad area, the loose tooth and the tooth next to it, partial jaw bone underneath the area and a good portion of gum tissue, mouth wall tissue. She wants to reopen the scar in my neck and take out more lymph nodes. Use a trach and have a reconstructive surgeon build up my jawbone using a bone from behind my knee. No mention of replacing my teeth, my surgeons response to that is that my teeth are the least of my worries..

Here is my issue, I don't want to go through an aggressive procedure again, I am just getting my career going again with sales mostly from commission, which means to make a living, support my family and keep the house, I need to be infront of people selling every day without speech impairments or being disfigured (although cruel, sales success is affected by presentation and appearance). I read about the horrors of radiation treatment and I am planning to refuse them. I realize the surgeon's stance of being on the safe side, saving the life is the only concern no matter what the cost...I understand that, but I need to have a quality of life....There has got to be another way, a less invasive way. For example, I am asking the surgeon to just take out the bad area, the cancer is isolated, so why take out good tissue and bone at this point. If it comes back, then we address it at that time. I just dont feel that she is sensitive to having a quality of life after the procedure.

I think radiation treatment is overkill if the area is being removed anyway....Can I insist the surgeon not to do certain things, like not take good tissue and bone out, don't take the lymph nodes out, don't use a trach....Just take out the bad areas only, leave the intact tooth beside the bad tooth etc...What are my options, should I seek another opinion from another surgeon? Am I being a baby about this?...I don't know what to do....Any suggestions would be greatly appreciated.

Thanks,
HGT

Hello HGT and welcome to OCF. I understand what you are going thru and its not easy. I am going to sound a bit harsh with what I am going to say to you. First get over the vanity, you have cancer! Everything else is trivial when you are going to have to fight for your life. I understand that you are concerned about your job, your family and their support. These are important but if you dont take your health seriously then you wont be around to worry about any of this.

Get a second opinion at a cancer center right away. Surgeons cut as you have found out. The cure for SCC is radiation with or without chemo and/or surgery. Thats it, nothing else will save your life. We all wish there were other cures available but there isnt.

Ive had the operation that you are describing and Ive lived thru it. I no longer live in my big beautiful house or work at my good job but I am here and alive and I count my blessings everday. I am very fortunate to be here with my family. No my quality of life isnt what it was but I am here and I am happy. You must learn to live with what you have and find happiness in that instead of in vanity and things. Its only stuff.

Sure, you can tell yor doc what you think needs to be done. That is not the wisest thing. Your doc hopefully has been thru years of training and treated many patients with oral cancer. They have much more experience in this than you do. Your doc is there to do what is in yoru best interest and save your life.

With this type of surgery you will need a trach to breathe. It is not optional. Your throat will be swollen closed. The operation is a long one as is the recovery. I had a harder time than most with this. My surgery was 10 hours and it took me 9 months until I was in pretty good shape. I was kept in the hospital for 2 months and had a visiting nurse for over a year. You may think that all of this is because Im old, well Im in my 40s which isnt old. This is cancer and it can be fatal if you dont take care of this. I would suggest that you get to a cancer center and get serious about successfully treating this.

Im sorry if I came across as stern, I was. Its very important that you realize how serious a diagnosis you have been given. It is life or death here and you need to understand how a wrong move here could lead you down the wrong path. Please do your family a favor and go to a cancer center right away.

I wish you all the best with this.

Wow, where do I begin...No surgeon will ever just take out a little bit of tissue based on the recommendation of his/her patient. It is the surgeon's duty to do whatever it takes to ensure the best outcome. If you refuse radiation, your chances of the cancer recurring are very high and the cancer can be more difficult to treat. You want the best treatment for your cancer that you can get. Do whatever it takes, surgery, chemo, radiation. The Radiation Oncologist works with a team of physicists who will determine what you should get and where it will be directed.

You are not alone. There are many here who have been through the same treatment. You may have to make adjustments in your life to accommodate the changes your will undoubtedly experience. There is life after oral cancer. And, my husband and I are living our best days now. Good Luck!

Thank you Christine for replying and for being direct with me.

I suppose I am in denial. I have even minimized the details with my family. Being out of commission from work for more than two weeks, I will lose my job meaning my family will have to go bankrupt. I am paying cobra insurance, $500 per month, which means I will lose health insurance coverage as well because I won't be able to afford that payment without working.

I know the right thing to do is to follow what the professionals want to do. I will go to a cancer center as you advised, but suspect they will have the same recommendations.

If I didn't have a daughter and loving wife and parents, I would have definately taken the easy way out by now. I guess I am not strong anymore, just as things were going good after years of struggle...and now with what lies ahead, it is very hard to find the will power to continue on. I am not suicidal...I would never do that to my loved ones, but I just don't know how myself and my family can cope with this. It is not the vanity part that I am concerned with. If we were financially stable, I would have no reservations at all, I would be at peace, but that is not reality right now....my biggest fear is that my family will be burdened.

I realize most on this forum have gone through the same or much worse, and I apologize for whining about it. Trying to stay alive is the most important part of all this. I just need to come to terms with that.

Thanks Christine for setting me straight.

HGT

I am sorry that I was stern with you. Im glad that you realize the severity of your situation. I am so glad that you have a good strong support system with your wife and daughter. Thats what will get you thru this. Dont worry about being a burden to your family, thats what families are all about. They are there for you and families stick together.

Finacially speaking, its rough but you can get thru this. I am now on social security disability since I am not able to work anymore. Down the road, who knows what can happen. Im a single mother and worried so much about my kids what would happen if I didnt get thru it. I found out that being poor isnt the worst thing that can happen. It took me a long time to come to terms with being 'disabled'. I had to keep telling myself over and over...'its only a house and its only money'.

Look under the financial tab on the main forum pages for things that can help you. I know the American Cancer Society helps some with up to $300 in services. Jobs come and go, even with the economy Im sure you will be able to find another job later.

Im glad you have found OCF. We will help you not just with advice, we are here to lean on as well. Depression is very prevalent with cancer patients. Im glad you told me you werent suicidal, I was concerned about that. That would void any life insurance anyway. Your second post shows me that you really do understand and care about the situation. The very best thing you can do is to get to a cancer center. Here is a list of them... http://oralcancerfoundation.org/resources/index.htm#centers

Hang in there, we will help you!

Hi HGT. Welcome but sorry you have to be here. I can only offer my opinion as a "caregiver" and wife. I will never even pretend to know how difficult it is to be faced with what you are up facing. BUT.......I have been on these message boards long enough to know that there can be a life after cancer that is both productive and happy.

My point of view as a caregiver and wife is that my husband would never be a burden to me no matter what. I know that if I was to get sick that he would be there for me no matter what. We have been married for 10 years and together for 17. I thought I loved him before his diagnosis but going through all we have been through together has definitely deepened our love and commitment for each other. We don't take one day together for granted.

My husband owns his own business and I work at a hospital and cover our health insurance. My husband was totally unable to work for a few months and had to cut back his work schedule after he recovered from treatment which greatly affected us financially. We had to tap into our IRA and are still faced with owing the IRS a lot of money. I DON'T CARE. As long as he is here we will get through it together. You need to give your family more credit. Be honest with your wife about your fears. I know it is hard to open up about all of it but she deserves to know how you are feeling. John had a hard time opening up to me about his fears etc. and that was very hard for me. I felt like he was shutting me out and I wanted us to be in this fight together! He eventually let his walls down and opened up to me about what his concerns and fears were and we worked through it together.

Get a second opinion and don't throw in the towel. You have found a great place to come and be honest about your feelings and gain tons of information and support.

Not that everyone will admit it but I'm sure many here have felt the same way you do about not wanting to go "through it all". Half way through treatment my husband told me "if it wasn't for you and my mom (82 years old), I would stop treatments." That was very hard to hear but I told him "well good, keep fighting for me and your mom".

Life is good and worth living! Sorry for rambling. Just wanted to give you my perspective as a wife who can't imagine life without my husband.

HGT,

Take all the advice above. I truly believe in Cancer Center's please get yourself to one. They may do things differently they have the latest in technology.

I never knew anything about Cancer Centers I was going from Doctor to Doctor,an ENT Surgeon and a Radiation Oncologist. My favorite of all the RO who suggested I needed a Cancer Center I took his advice and am so glad I did.

As far as your family you need to be up-front with them I'm sure they'll help you through it.

Take care, keep us posted.

Connie

HGT - I hope you take all the advice above and get yourself to a Cancer Center. Christine gave you a link above. The changes that we go through in life can be pretty stressful especially when so many come all at once. Cancer can really put a big dent in one's lifestyle and financial means, and can force us to make drastic changes in future plans, and reconsider options. But all that becomes small stuff when compared with the love of family and friends. I am so glad that my son chose to fight the biggest fight of his life and that he allowed me and the rest of his family to be part of his recovery. His beautiful little 5-year old daughter was a big reason my son kept going and now, four years later, when I see the love that radiates between them, my heart just bursts with love and pride for the two of them. Life is good. Believe it!

Thank you Anne-Marie, My daughter is 6 years old, and I share a similar bond. She has no idea what is going on, but said to me yesterday out of the blue that she wants me to live forever. It tore at my heart and along with all the posts encourages me to give it my all and fight this as best a I can.

Thanks again for sharing.

HGT

Thanks Anita for your words of wisdom and a push in the right direction.