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New member here -- Father diagnosed with tongue cancer

Sepanian
Posts: 7
Joined: Jul 2009

Hello everyone!

I really need some feedback for some peace of mind.

I'm actually on here on behalf of my father because he barely knows how to speak English, let alone use a computer.

Fourteen years ago he had sinus cancer which they were able to remove with chemotherapy and radiation. Despite of how many times the doctors told him to quit smoking, my dad's stubborn mind didn't take this advice. He continued smoking and now got diagnosed with oral cancer. Seven months ago he was diagnosed with cancer at the base of his tongue.

I understand that the families of cancer patients suffer a lot of psychological trauma; however, mine is starting to get out of control due to the news we recently received. The doctors wanted to perform surgery a few months back and completely remove his tongue; however, they also gave him the option for chemotherapy and radiation. My dad didn't want his entire tongue removed so he went with the latter. Well, it's 7 months now and the chemo as well as radiation has not helped and he also has a PEG tube for feeding. Recently, the tumor started bleeding excessively into his stomach and he kept throwing up blood. He was in the hospital for a week now and they burned the wound on the tongue to temporarily stop the bleeding. Since they were worried that the blood spilling into his lungs, they performed tracheotomy on him. Now the doctors are working together claiming that the tongue, the larynx, and the vocal chords all need to come out (Claiming Stage IV). The surgeon who is known for doing this is even iffy about it and claims it's a very high risk surgery. She doesn't know if she's going to perform the surgery and says that if we don't do it, your father only has max 3-4 weeks to live. If we do the surgery and everything goes well, along with recovery, he has max 1-2 yrs to live. I guess these are numbers based on statistics she has seen being a Head/Neck surgeon at City of Hope for many years. She told us that she will need to consult a few other surgeons (Plastic, etc.) in order to see if they can perform this surgery or not.

I'm in fear for my dads life and I can tell he's stressing and depressed because he knows these numbers as well and wants to proceed with the surgery but now finding the right person to do it has become the delay; we're also afraid of the cancer spreading elsewhere while waiting for these consultation results to come back to us. I read stories all the time of people having oral cancer and getting their tongues removed completely with great survival rates thereafter; I'm not sure what's going to happen but I'm very nervous and just need some feedback in regards to information, stories, etc. you guys can provide to give me for some peace of mind; or not so great stories but the truth will work a lot better for me.

Thank you all very much and I apologize for the extremely long story but I tend to type on and on once I begin.

Best Regards,

Chris Sepanian

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Your dad does indeed have it bad. Stage IV of any cancer is not going to be much fun, to put it mildly, and from what you describe, even the experts in the surgical field are suspect about successful results. That is not good news and there is no way to sugarcoat that.

It does no good now however, Chris, to 'what if' the past. The past is behind us and dad's choices probably seemed reasonable to him at the time. Even the continuation of smoking is understandable, I suppose, although I would like for someone to study the percentages of smokers who quit following surgery and other treatment versus those who quit while avoiding surgery. I would suspect that the surgery recipients' percentages would be much higher, although I have no evidence.

The aside aside, dad is not in a good place at the moment, so depression is quite understandable. He has a tube in his stomach, a hole in this throat, and the prospect of impending death if the doctors do not do something surgically for him: what's to like about that?

Even so, if he is still smoking, he can choose to quit right now. If he is consuming alcohol, he can choose to quit right now. These actions on his part can only help him.

If he is of a mind to, he can seek therapy for his depression. It can often be obtained through various charitable organizations free of charge. Based on the doctor's somewhat surprising prognosis of 2-4 weeks, that may not be a viable option at this point. I am not sitting there next to your dad, so I don't know.

Regardless, it is true that squamous cell carcinoma survivors have a really great chance these days of getting to that 95% rate, particularly if they cut out the smoking and the boozing.

First, however, the cancer has to be removed.

In your dad's case, there are many complications, as the cancer has spread. His history of smoking may even impact his ability to survive surgery, which may also play a part in the decision about whether surgery can be safely performed.

Cutting out the tongue, by the way, is not the end of life. It is, for sure, the beginning of a new, but I know several folks via this site who lead new normal lives without most or all of their tongues. In fact, any ONE of the items you describe as now being cancerous can be removed without gravely affecting the ability to lead a NEW normal life.

It is the combination, as dad's doctors have advised, that is seriously problematic.

Best wishes to dad and his family.

Take care,

Joe

Sepanian
Posts: 7
Joined: Jul 2009

Joe,

People on this discussion board do not lie when they say that you truly give great advice. Good thing about my father is that once he was diagnosed with the cancer, he immediately quit smoking as well as drinking so it's been about 7 months he hasn't touched a single cigarette or taken a sip of an alcoholic beverage. He properly feeds himself every single day on schedule and he's a very brave, yet stubborn person. He's the kind of person who will take on any challenge presented with a positive attitude but I just feel that this challenge has definitely put up one heck of a fight and has overwhelmed him. You're very correct about the fact that it's quite understandable to be depressed in a situation like this; however, we're all keeping a positive attitude and an environment around him until further notice from the doctors regarding what we're going to do about all this.

Again, thank you so much for your response regarding this; you truly did put a little more confidence in me so we'll just keep our fingers crossed and hope for a positive outcome.

Best regards,

Chris

Lukedog
Posts: 6
Joined: Jul 2009

Hi Chris,
I am scheduled to have tongue cancer surgery on Monday. I also have had radiation treatments and chemotherapy with limited results. Now surgery to remove part to most of my tongue, some cheek area and 2 lymph nodes is the next step.
I have found that you have to trust in the doctors opinions and then trust in your decision to do what you think is right. For me surgery is the next logical step.
I know it is hard on you and your father and the rest of the family. But there have been many success stories and you have to hope for the best.
I also want to thank Joe-Soccerfreaks for his comments here and in other messages. He gives good advice and seems to be positive.
I am going to go into my surgery with the positive attitude that I will be able to give other cancer patients hope in the future.
At this point, just give your dad all the positive support you can and try to hang in there.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Luke:

Make the nurses smile and they will treat you well. Make them laugh, and they will treat you very well (not THAT well!). Get a doctor to laugh ... well, I've done it, but it's very hard to do ... don't aim that high :).

You will be in my thoughts next Monday.

Best wishes. Your attitude is right and that is first.

Take care,

Joe

Sepanian
Posts: 7
Joined: Jul 2009

Lukedog,

You seem to be quite positive and confident about your surgery and treatment which is definitely a good sign. We have put our trust in the doctors for we have no other people to put our trust into but ourselves and our decisions.

Surgery seems to be the logical step for a lot of people with oral cancer and I'm glad you have your date scheduled and ready to go so that you're not playing this waiting game like we kind of are. My entire family is here for my dad and we're going to provide him all the positive support we can. I also wish and hope the best for you on behalf of myself and my family for you; I'm sure everything will be fine. Good luck with your surgery! Do let us know how everything goes once you're out.

Thanks again!

Best regards,

Chris

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