My Dad, 65 today, will have a total glossectomy left neck dissection, free flap, trach and PEG on April 6th. This is a reoccurrance of SCC on his tongue and after the 1st surgery he had radiation and chemo. I understand life is never going to be the same for him again and now I am panicking. He lives alone, 1 and 1/2 hours from me and has always been completely self sufficient. For the past week he has been living with us and can't even get his pain meds. right! He went from being vice-president of a bank to a confused weary couch potato! Is he going to die???? Well, of course he is, and probably from this, but is he going to recover enough to enjoy life again? I am so scared...the thing I am afraid of the most is my Dad being depressed. This has happened so fast and he is such a vain man.......oh dear God, I am terrified! I feel like we are sitting on a time bomb. I really feel like the last day of my Dad's life is just 1 week away! Please help in anyway you can!

Dear Jill
Please calm down... you are going to give yourself a coronary, then you won`t be of any help to anyone! Ok Breathe.....
Pain meds cause confusion, lethargy and tiredness unfortunately..but thats better than leaving him in excrutiating pain, right?
If you are afraid of him becoming depressed that can be resolved with Zoloft..... he is also afraid and probably trying not to show you his fear.

This is not the end of your dad`s life Jill..if the Doc`s thought that they could not help him any more they would not reccomend further treatment but send him to hospice.

We all went through these feelings and terrors and made it ...you will too.
Your Dad is going to need your help for a little while, you can do it. We who have been through all this will help walk you through .

Marica

Jill,
I have to ask are you more scared for you or for him? It sounds to me like they are pulling out the stops to treat the disease - very agressive treatment and by no means palliative. Yes his life will be different, almost all of out lives are different after this - even those who got away fairly unscathed.

This is a gift for you to give back to your parents who gave so freely to you. That doesn't necessarily mean that you personally have to be the primary caregiver but you must certainly make sure that he has a good one. I am sure that he would rather be in his own environment rather than burdening you.

I had to manage my fathers meds and it was so confusing I put together a schedule in .xls (Excel) database to keep track of it all.

Treatment is very tough at any age and he will need a lot of time resting while going through an extensive healing process. We patients almost always all suffer depression - there's meds for that.

Like Marica said, take a deep breath. There's anti-anxiety meds for too if you need them.

Hi Jill,

Marcia and Gary are right on and my wife knows how you feel, but she would tell you not to show it to your father. It is important you are there for him and you are strong. Treat this as just something he has to do, with your help of course. We know it is tough, but as Marcia says, the Doc's wouldn't be taking the course they are if he didn't have a future. I suspect it will be tough for a while, but take things one at a time. Get his meds under control and make sure he understands what is happening and how must participate.

If we can help in any way, we will.

Steve Daib

Marcia, Steve and Gary -
You are all right, I do need to take a deep breath...and try to calm down. It is SO HARD to see your parents like this, he has always been the one in control and now he is loosing ground. I know that there is a killer lurking in his body, we can SEE IT, so it has to come out, but I am terrified...for me and for him. I really do think that my biggest fear is that he will feel abandoned if it ends up that he needs constant care and I can't take care of him at home. I work full time, I have a husband and 3 kids, one just 1 and 1/2, and we are constantly on the move. I feel like my Dad is just watching us run around right in front of him and he is just trying like hell to keep up with the pace of my house. I don't think it is fair, to him or us. I know he wants to be in his own house, but that is too far from here for me to be of any real help to him. Maybe we really need to consider selling his house and getting him a place close by me? I am also scared that even with the surgery, he may only have about a year to live. One of the nurses in palliative care, (that used to work as a head and neck RN,) told me that he would have 3-6 months without surgery and probably about 1 year with. I understand that the Dr. would not be doing something so radical if he did not feel that he would survive, if only for a little while since his surgery was dependant on his PET/CT coming back clean for metastasis, which it did, but the palliative nurse also said that head and neck surgeons also tend to paint a more rosy picture as far as life expectancy when surgery is involved. Who do we trust, whom do we believe???? My Dad does not necessarily want to know how long he has, but I need to know. I need to plan - he is total self-reliant right now and I need to take over most if not all of his daily responsibilities like cleaning, paying the bills, shopping, laundry, etc. Wow, what do I do.... I don't want to pull a dying man out of his home - if in fact he is dying - but I also don't want to leave him there alone to battle pain, fatigue and fear all by himself.
Thanks for listening, this is such a great place to vent and get great advice.

Jill

Jill,

Something that really burns me up is when a nurse or tech tells someone something they should hear from a physician. Did this nurse have your dad's chart in front of her for review or rely on your description of his condition? No offense to you or the nurse, but we aren't physicians. Unless she was instructed by a physician to give you that information or your dad has been referred to palliative care, she was out of line. I have worked in the medical field since I was 16, actively with physicians and that isn't the way it is supposed to work.

Sincerely,
Lisa

Jill, I agree with Lisa that isn't how it should work, but it also sounds to me like this nurse has some experience and MAY have given you some information worth asking more about. Espeically soince you feel you need to know in terms of care decisions (and that seems like a very legit reason to need to know to me).

Have you (or your father) asked this question directly of his doctor? That doctor should be able to give you some idea, specifically,of the chances that this surgery will send the cancer into remission, and what the odds are that it will come back (and how long the remission might be). Is there a chance (even a small one) it won't come back for several years? Or ever? Can she or he point you to any research on the succes of this sort of surgery in cases like your father's case?

Beware of what you ask, though. Are you sure hearing the answer would help? Remember whatever answer you hear, that you will be hearing statistics--what happens to the average patient--it won't necessarilly be what will happen for your father which could be much better or much worse than what the doctor tells you. So there is a limit on how much helpful information you'll get.

My dad had a really serious heart attack several years ago and, since it was a silent heart attack, it killed a lot of heart tissue before he could have some kind of bypass. When he finally was diagnosed, a young intern who looked at the results of his tests told him that unless he could get a bypass, he would have no longer than a year or two to live. He was later told he wouldn't be able to have the bypass (too high risk) but with the help of new drugs on the market and a heart that has managed to compensate for the main arteries that arent' working right, has lived a good healthy life for four and 1/2 years since that doctor told him his days were numbered. And he doesn't appear to be ready to leave it anytime soon! I know this isn;t cancer but I know cancer stories like that too (this one is just on my mind right now ebcause you are also dealing with your father) so I have to say that I think what anyone tells you, doctor, nurse or whoever, can be misleading and scare you unecessarilly.

Nelie

Dear Jill
Hope that I can try to ease your fears a little bit, my husband 52yrs underwent a total glossectomy and radical neck dissection etc a year ago after a reoccurence. I was so petrified and really didn't expect him to survive the operation but he did. We got to meet somebody before hand who had also had a complete glossectomy and she looked so well two years after her surgery, her speech was understandable as well. My husbands speech is also very good, he has a lot of problems with swallowing but has a peg tube so we manage to cope with that. Doctors manage amazing reconstruction these days. I will be thinking of your dad and your family and hope his surgery is successful
Take care
charm xx

Hi Jill and Dad,

Since I only had a partial glossectomy and a neck dissection, I can't offer you any advice on the rest of the surgery that is planned for next Thursday. Please know that I will be thinking of you all day with special prayers and good vibes going your way.

That day, April 6th, will be the one year anniversary of my surgery. It was a good day for me and it will be a good day for you. The road to recovery begins that day.

Jerry

Hi Jill and Dad,

I may have posted to you before in another section. Your dad's situation sounds the same as mine. I had a quick recurrence ( no time or chance for rad) after a T1 SCC rt. lateral tongue in Nov 03 that resulted in a near total glossectomy on the first of Feb 04 among other things. 36 rads after that. I was 68 at the time they took over 85% of my tongue. Recurrence was extremely fast growing and aggressive cancer that also involved my pharynx.

Yes, this operation does change your life but I'm two years out now and hanging on thanks to a supportive spouse and family. I hope your dad knows how to use a computer and e-mail as this has been vital. I use the computer in place of a telephone a lot of times. Also begin speech and swallowing therapy as soon as can and stay MODERATELY busy. Yes, it DOES impact speech. I have gotten used to my PEG tube but now take 10-15 oz. per day of fruit juices, coffee, and thicker (pureed soups) orally via a 2 ounce syringe. The syringe is necessary for me since my new "tongue" (actually a flap from my forearm) is stationary at the floor of my mouth.

I also saw a maxillofacial prosthodontist who fitted me with a palatal drop mouth prosthesis that lowers the roof of the mouth and helps with speech intelligibility. Although most people understand me if I speak slow, using the telephone can be a problem.

Also, I twice daily use bite blocks to stretch my mouth, massage my neck about 20 minutes daily with cocoa butter to help with neck stiffness, and do other exercises a speech therapist will show you to strengthen swallowing muscles in the throat. Your mouth will feel "different" but one eventually gets used to it. Get regular physical checkups. Keep physically active. Keep your oral cavity very clean with brushing and a tongue cleaner (I use Biotene mouthwash & toothpaste).

Sorry to ramble on but I just want to pass on some things I found out in my journey. My thoughts and prayers are with you as you prepare for your surgery. God Bless!

Jim Haucke
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SCC rt lat tongue dx Sep 03 (T2N0M0); surg Nov 03; recur dx 1/04, surg 2/04 (subtot glossectomy, radial forearm free flap, pharyngectomy, trach (out 3/04)& PEG); 36 rad (3-5/04) cellulitis infection of neck dissection area 6/04 and 10/04 -- clear as of 3/06