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#20689 07-12-2006 08:09 PM
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Hello my name is Karen and my dad was just diagnosed with cancer. We just found out about a week and a half ago. I think he has had it for some time now. He had been having some trouble with his teeth-dentures, and was recommended to an ear nose and throat specialist. This doctor did some tests and told him he had cancer. He went to the VA hospital in West Palm Beach Fla.(he is a (56yr old) retired Vietnam veteran with agent orange). They did some scans and told him that he would have to have his lower jaw, half of his tounge, the nodes in his neck removed, and then radiation. It was like a shotgun went off in my entire family's face.

He has gone to Altanta Georgia to the VA hospital there. His sister-my aunt- is living there just outside of Atlanta and she will be his primary care giver before ,during, and after his treatments. I am living in California(with five children) and will be going back and forth. His next appointment- we don't know what comes next- is tomarrow.

My dad is a smoker and always liked a few beers around 5pm. We all know that this doesn't help and could definately be the cause of his cancer along with the agent orange and chance. I have been praying, reading, talking with people, and everyday I get more knowledgable about cancer.

I still cry uncontrollably.

Our journey has just begun and I now know what cancer is. I could never have known. I have many questions about the surgery, disfigurement, speech, etc. I am very worried because my dad has lost alot of weight already. He has dentures and says with or without them it is painful to eat. He also does not have very much of an appetite.

When I get more info I will have the name and stage. I am hoping that this cancer is the begining of the rest of his life. Maybe he will stop smoking and drinking and take control. This has been the biggest wake up call on many things for us as a family. Good and not so good.

I wanted to give you a little idea of where we are coming from and I want to say what a wonderful site this is and wanted to say that I pray for everyone . Thank you for letting me share. Karen


karen and dad
#20690 07-13-2006 12:50 AM
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Karen,

I am so sorry. You will find that the people you meet on this board have gone through the same emotions as you and your dad. My husband was diagnosed with stage III SCC in November of last year. He was 39 years old and I was pregnant with our second child. He is doing great at the moment. For right now all I can say is do your research...and this is a great place for that. I took ownership, learned everything I possibly could on this horrible disease, and questioned the doctors. Keep us posted on his diagnoses and treatment.

Caregiver to husband Mike diagnosed with Stage III SCC on Nov 05 no primary 1 lymph node pos 6 Taxol/Carbo 2 cisplatin/5 FUs 39xrad


Caregiver to husband Mike SCC Stage 3 no primary/Carbo/Taxol 2 Cisplatin/C5FUS/39rad/finished 3/15/06
#20691 07-13-2006 04:18 AM
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Hi Karen:

The first step is that your dad's cancer has been found and that he has you for support during the treatment process. The second step, and equally important, is that you have found OCF for support. The people here understand what you are feeling and going through. When my husband was diagnosed with tonsil cancer in 2002, I found OCF accidentally (or maybe not) and besides cutting edge treatment information, I was given a feeling of never being alone and you aren't either.

Welcome...

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
#20692 07-13-2006 04:52 AM
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Hi Karen,

Ditto what Kim and Jessica have said. Scour this site. It has more information in one place then you will find elsewhere. I found the site after my treatmetn was finished and it has helped me cope with what I and your father will go through. Ask any questions you want, no matter how trivial they may seem. Lots of Doc's don't like to talk about stages because of possibly scaring someone too much.
We are all here for you and will help in any way we can.

Your father may need a peg tube to keep up his nutrition. Wonderfully ugly device, but they work .

Keep us posted.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#20693 07-13-2006 05:06 AM
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Welcome Karen
I went through all of the same emotions you are describing when my Dad was diagnosed in January of this year. I actually wondered at times if I would ever stop crying. For the first couple of months I would just start crying out of the blue anywhere and didn't feel like I had control of it.
Don't worry it will get better with time but it is still very hard. The OCF forum has been an invaluable resource for me. Just know you are never alone. Keep asking questions and again welcome to the group -
Kim S.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
#20694 07-19-2006 06:21 AM
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welcome karen, bless you we have all gone through these emotions they will be light at the end of the tunnell but at the moment its natural that you and the family will be gutted at the very thought of this BEASTLY DISEASE prayers and hugs your way stay strong ...regards maz

#20695 07-19-2006 09:36 AM
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Hi Karen, I too had a Dad with this tough diagnosis. All I can tell you is this: My Dad has now moved on from this world and I know he is at peace. It was not an enjoyable 11 months, for any of us, and yes, I too cried at times like I did when I was a baby, but my Dad and I grew so much together in the last 11 months.....
I can't help but say that cancer may have a bright side if we are able to stand back, take a deep breath and jump into the battle with our hearts, hands and our heads. I did so much traveling back and forth between my home and my Dad's over the last year, (only about 2 hours, but with a new baby in tow.) I was totally exhausted all the time, would cry at the drop of a hat, and irritable with my husband and children not to mention terrified and frustrated and trying to hide it all from my over-protective Father. But, long story short, we bucked up, faced this F**KER!!!!! Sorry, but sometimes you have to get mad!!!!! My Dad lost this battle in the end but he gained so much respect and so much love from me, my husband, my sister, her family, his girlfriend....the list goes on and on. I know that he died knowing he has never been more loved in his life.
I guess what I am trying to say is hold on tight for a bumpy, terrifying, and emotional yet somehow fulfilling ride. Cancer cannot take the best of you, not even close. It may take your life, it took my Dad's, but it did not take his essence and the love that we all had for him, and him for us. THAT LIVES FOREVER!
If you need to talk, ever, please don't hesitate to email me.
Take care,
Jill, daughter to Bob who bravely fought for 11 months and then passed with me in his arms.

#20696 07-19-2006 09:54 AM
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Hi Karen and welcome to the site.

Jill shared her story with you and it's a sad one, her fathers life was taken by this cancer. But, know that there are MANY of us here that completed treatments and are here many years later to tell our stories. I had a stage 4 cancer three years ago and am doing fine. I had half of my lower jaw removed, neck nodes taken out, and radiation..............I live a wonderful, normal, full life. Few minor adjustments had to be made along the way because of some side effects, but, very manageable. We are constantly having to make adjustment as we go along the road of life, so this is just one more for us cancer patients. Support your father and help him believe he will have a positive outcome. Ask questions here and let us help you.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#20697 07-23-2006 04:52 AM
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Hello to all of you angles, I am having a bit of a crying spell after reading all of yor replys. I am away from home,the Orient, which had been planned and paid for for some time (before I found out about my dad). I am on the cancer roller coaster. I feel guilty for leaving, my dad insisted. I am trying to stay cool for him, he has always lived vicariously through me and my kids, eventhough he has done his share of traveling, he loves my stories and pictures and souviniers. He wasn't going to have surgery until August 15 and now it has been moved up to July 31. He doesn't want me to come back because he says he will be "out of it" and won't know the difference.(My aunt and uncle will be there pre-op, post care etc.) He says for me to finish my trip, put the kids in school hen I get back August 15 and then come. I am ready to vomit when I think about then surgery and if something goes wrong. When do you ignore what your dad says and do what you feel is right? Am I always going to think every second is his last? I try to do the mantra over and over-"living with cancer, no dying from cancer" Why does it feel the same? I am still new to the game. It hasn't even been a mont. It feels like tens years. I am though flabergashted when I read the stories on here. I laugh and cry, sometimes at the same time. You are all so truely god sent to me I treasure every story and person and loved one of you all. It is the old saying knowledge is power, and also the best education you can get is through everyday life and its experiences.

One last thing, the nodes on my dads neck are to be removed and the one is close to the main artery in the neck. If it is to close, will the doctor just leave the part they can't get to without hiting that artery and do radiation or will they try to get it and if they hit someting that is just a risk they have to take? Has anyone been through through this?

Thank you all, Karen


karen and dad
#20698 07-24-2006 12:48 AM
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Karen: My brother was sitting in a chair reading the paper the next morning following surgery. When I walked in, it had been just a bit more than 12 hours since the surgery. He was grumpy (his usual self) and wanted to go home. The doctors wouldn't let him. We were all amazed at how seemingly easy the surgery was for him. While all people are different, the surgery will probably be fine. The radiation & chemo (or whatever treatment is next) will probably be tougher and that is when he will need you the most. Enjoy your trip, your time to be a care taker will come soon enough.

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