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Help! Dad just diagnosed with squamus cell - need some information!

samsmom
Posts: 2
Joined: Jul 2005

My dad was diagnosed with squamus cell on the left side of neck - primary we think is right below it in the throat. He is having a PET scan on Friday. He is a very special case - he had Hodgkins Disease in the late seventies and went through radiation for that which got it. Since then he has had tons of medical issues the latest of which was a quadruple bypass that went wrong and paralyzed his diaphragm making it very hard to breathe. He is on oxygen pretty much all of the time. So now we get this diagnosis (this poor man is only 57!) and they tell us radiation is not an option b/c of his prior radiation and so surgery is the only way - they want to do a neck resectioning and take out anything that is not vital for survival, including muscles, lymph nodes etc. I have never heard of any of this and we are all so scared. There is a very good chance he might not come off the ventilator with his breathing problems or might not make it through at all but if he does what is life going to be like for him afterward? Will he be disfigured? Will he have taste buds? Will he be able to hold his head up on his own if they take neck muscles? The doctors seem so vague about all of that after stuff only focusing on getting the cancer out and like I said they are saying this is his only option for survival. Please help.. I don't want to lose my dad - I am just desperate.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Dear samsmom: First, I'm so sorry for the health problems that your Dad is experiencing. I know this is a scary time for all concerned. But I'm very glad that he is scheduled for a PET scan as this is about the best technology available these days to find cancerous growths and tumors in our body and to help the doctors develop a proper diagnosis and treatment plan.

I had a radical neck dissection two years ago after my second bout with squamous cell carcinoma. My first surgery was in 2001 when it occurred on the left side of my tongue. In July 2003 I woke up with a nosebleed and a big lump in my left neck and found through an MRI that it had returned.

After the radical neck dissection in Aug 03 (where they took out muscle, nerves, 79 lymph nodes in the left neck area, my left internal jugular vein, and a bunch of other stuff), I had 33 radiation treatments to my neck which ended in Dec 03.

It's now been almost two years since my surgery and I'm doing well. I've had some slight facial disfigurement from the surgery (looks like I have a big dimple in the left side of my chin), some weakness in the left side of my face, numbness from my left ear down to about the middle of my chest (front and back), a scar from behind my left ear around my neck almost to my right ear (which is becoming less and less noticeable with time) and some weakness and limitation in lifting my left arm up over my head. I lost my taste during radiation but it's gradually returned for the most part. I can hold my head up just fine although it did get a little tiring right after surgery. I didn't need any physical therapy (PT) after surgery but it's my understanding that some people do benefit from some PT. I do try to keep my arm muscles strengthed by doing pullups using the doorframe in my bedroom and that has helped me regain some strength in my left arm.

I'll be 54 this October and having cancer has changed my life in a very positive way. It is so important to let those who love you help you during these difficult times - no matter how tough you think you may be. I hope you and your Dad have a stong network of family and friends.

Get educated about your Dad's illness and treatment and ask his doctor and nurses questions. Write them down as you think of them so you won't forget when you meet with his doctors.

And don't forget the "Serenity Prayer". It's been my most comforting prayer during times when I've felt down and out about my cancer and other things in my life.

Good luck to you and your Dad! I'll keep him in my prayers! Kathy

The Serenity Prayer

GOD, grant me the Serenity
to accept the things
I cannot change,
Courage to change the
things I can,
and the Wisdom
to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardship as the
pathway to peace.

Taking, as He did, this
sinful world as it is,
not as I would have it.

Trusting that He will make
all things right if I
surrender to His Will;

That I may be reasonably happy
in this life, and supremely
happy with Him forever in
the next.

Amen

Christmas
Posts: 91
Joined: May 2005

Dear Kathy:
I want to let you know that you've helped me with your postings about your experience. I recently went through a "panic" period when I contracted some health difficulties - congested ears, ringing in my ears, some aches and pains, etc. I didn't know if the symtoms were side effects of my treatment for nasopharyngeal cancer or if the symtoms were an indication of a recurrence. I have things under control now. Thanks for sharing your prayer. Really helps.

Samsmom - Take it one day at a time. There will be better days ahead. Going through my treatment was like traveling through a tunnel, but there is an end and you will be in sunlight again.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Dear Christmas: I'm glad my posting was able to help you. I know that I sometimes get worried when I have aches, pains, and weird sensations in my body thinking "Oh no, now what"! But I try to remember to "let go and let God". I hope you continue to do well and enjoy life!

samsmom
Posts: 2
Joined: Jul 2005

Oh Kathy - thank you so much for your wonderful post. Honestly - you are the first person that has said anything positive about this terrible type of cancer. I am so pleased to know that you are doing ok and have such a positive outlook on your experience and life in general. Thank you for your prayer - it is my absolute favorite and have turned to it many times. Thank you for being a positive light among all of this negativity... you'll never know how much that has helped. God bless you..
Lisa

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Lisa: You're very welcome! My daughter's name is Lisa too. Sometimes it's very hard to keep a positive attitude but it's so important to be able to do so - for you and your Dad. None of us have any guarantees in life and it can end at a moments' notice - whether we have cancer or not. So try not to waste precious time dwelling on the negative. May God continue to watch over you and your Dad and keep y'all in His care!

tracy_csn
Posts: 15
Joined: Jul 2005

I am male, 55, and had the radical neck dissection in Nov 04. Then radiation and chemo. In this surgery they go after all the lymph nodes on one side, the left side in my case. To take those lymph nodes out, they have to take out a specific neck muscle (sternocleido-mastoid muscle), jugular vein, also in my case the lower left salivary gland. I don't believe I would call my new look "disfigured", but certainly asymetrical... My wife joked that I should have had them take a matching "tuck" on the right side too. I have been doing physical therapy and exercises and now have full range of motion back for my shoulder, although it is necessary to train some new muscles to compensate for the one that's now gone. I lost taste as a result of the radiation, but after 3 months or so after the last treatment, I had taste back. I had a feeding tube, but had trouble at first getting enough nutrition, and lost about 30+ lbs. Once I started pumping in enough calories a day, I was able to keep my weight steady. It is now 4 months since the end of my radiation and chemo, and I am back to work full-time. I still have dry mouth, but expect that to continue to get better. Good luck and also prayers for your dad.
Tracy

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