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HAVE OROPHARYNGEAL CANCER, DESPERATELY NEED HELP AND ADVICE

richg60
Posts: 1
Joined: Jan 2009

i have an ENT doc here, but no oncologist. i have Medicare Parts A,B and D. i have a case worker, however, i am confused about who she actually represents. i will find this out tomorrow.

i am in severe pain and it is getting more painful and difficult to eat. i started drinking Ensure and high calorie smoothies. I am losing weight and am afraid that i will die before i can get the surgery and treatments i desperately need.

thank you for any help and advice anyone can give me.

Richard

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

You did not mention staging, Richard, so I do not know the severity of your cancer, but it seems from your post that they have not discovered it elsewhere, and if that is the case, that is a very good thing. So...be thankful for that to begin with.

As for the waiting, it is painful but seems to be the plight of all of us who have had cancer.

I am a tongue/neck cancer survivor, later a lung cancer survivor as well. I am here to tell you that it does get better.

I am not saying it will be easy. But it will get better. It will get pretty darned good, in fact, if you give it a chance to, and if you show determination and patience and a positive attitude.

Having an ENT that you trust is a good first step. If cancer is confirmed, as I assume from your post that it has been, he/she should be recommending an oncologist that he/she thinks highly of, rather quickly, we hope.

The ENT will do the surgery if it comes to that, and, in my case, was really the point man for the first parts of my initial treatment. However, in the end, Onco Man is the guy who has ruled the roost.

I suspect you will end up with surgery, and probably chemo and/or rads (I had both) to eradicate any straggling cancer cells. If those options are available, I would recommend them, at least if the docs do as well.

My stance is Hey, let's get rid of it! If that means cutting me up a bit, let's get after it. If it means drowning me in poison (chemo) then let's do it. If it means nuking my face and neck (radiation), then what are we waiting for?

I am not saying that I was happy at any stage of that process, and some were more worrisome than others, I assure you. But I dealt with it, and you will too, Richard.

Your position, right now, should be that you want to know the best way to get rid of this junk.

And then: let's do it.

That is just my opinion and the way I dealt with it.

I am now cancer-free.

In the meantime, (now that I am done preaching :)), you need to line up an oncologist AND a nutritionist, at the very least. Your ENT should be helping you with this, as should your caseworker (I would rely on the ENT's advice, however, since he/she knows the other docs and knows their reputations.)

When you talk to these people, advise them that you also want a social worker (to help with finances and working out travel arrangements) and a psychologist/counselor, to help with the mental trauma you are obviously already experiencing. Maybe you will get these folks, maybe not. But it doesn't hurt to ask.

Keep doing the Ensure. Try yogurt, which is probably even better for you than the Ensure. The smoothies are good, too! Keep at that. Try blending stuff. Try creamy soups. I was surprised to find that I actually enjoyed cream of broccoli! And I was able to eat potato soup pretty early on.

I had half of my tongue replaced with stuff from my left arm, Richard, along with a radical neck dissection. I still have a peg tube (for liquid protein nourishment) but I am now eating food orally regularly. You will too.

You are worried, and scared, and you should be. The C word scares the heck out of all of us. I think, however, that your cancer has a good survival rate if handled correctly and if you are up for it.

Hope this helps.

Hope and Humor!

Take care,

Joe

joolivermesplay
Posts: 21
Joined: Oct 2008

When my husband was first diagnosed it took us over 2 months before he was getting ready for radiation and Rad Plat Chemo , he was stage 4 with Squamous Cell in his r tonsil, soft palet , and 2 lymphnodes on r of neck , after 35 radiation and 3 rad plat he was cancer free for almost 4 years , he has had surgery now because it came back in his tongue , but they say he is cancer free again ..hang in there , bargain for Doctors that will accept what medicare pays which is usually 80% , the main thing is get treatments if that is your option and don't worry about anything but getting well , the road ahead will get easier for you and you just put one foot in front of the other one AND JUST DO IT . Good Luck to you and God Bless.Jo

mono5
Posts: 98
Joined: Jan 2009

Some information i discovered off one of the Ovarian threads about the AHCC Mushrooms from Monika ... the thread about Breuss diet. Anyhow i had also heard about this supplement from a homeopathic physican that uses it in his clinic. I decided to research it further and what i found out about it blew my socks off. It said that it works with most cancers. Further i found this women at amazon.com that had, or has, head and neck cancer... this is what she had to say...
1 of 1 people found the following review helpful:
Cancer is just the dirty C word!, August 26, 2006
By C. Cain Jr. - See all my reviews

Dr David Williams sent me a medical review of a product a couple of years ago. I read the review about a Japanese cancer fighting supplement, with mild interest and filed it away. Little did I know that what I read would pertain to me. On July 10th I was diagosed with Head and Neck Cancer. When I received the news, my world came crashing down upon me. I was numb, fighting to hold back tears and hollow inside. For a brief time, I failed to live, thinking only of getting my life in order to prepare to die. Then my Irish came to the front and I had to know what happened to me and why. I searched the files and found the article from Dr. Williams. AHCC is being used in Japan to fight cancer and the success of this product has been documented. I did more research and purchased AHCC supplement from Immpower. Expensive, but what price tag do you place on your life? I have been taking the maximum dosage for the past 12 days and I am starting to feel different. My energy level is up, I am sleeping better, the emotions are coming under control and I am working out everyday. The greatest thing, the tumor on my neck is getting smaller. Dr. Kenner recommends a three week maximum dosage and I have 9 days to go. I will win. This is a small book that can be read in an hour or so. Then you need to read it at least 5 more times to make it a part of your life. God has given us the will to live and the will to fight. Just because we have cancer does not mean that we are doomed to die. We do everything within our power to overcome this dreaded disease. AHCC and the fantastic book written by Dr Kenner has given me hope and a way to fight back and bring cancer to its knees! Every cancer patient in the world should be required to read this small book and get hope and direction. Dr Kenner, I thank you for confirming my direction and giving me the strenth to go on. We will win! Anything less than complete remission is not an option! God bless you all!

I profit in no way from this information i give freely.. the booklet, AHCC: The Japanese Medicinal Mushroom Immune Enhancer is available free at www.iherb.com. Search for AHCC.
Caution.. you need to be under the care of a licensed healthcare physican. Don't attempt to treat cancer on your own. I got my booklet in 3 days.
Take care... God Bless all.

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