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Pete Got the News He Didn't Want to Hear
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posted
I got the dreaded phone call when the doc said "i don't have good news"..... the cancer is back.

Surgery is the best option which is a laryngectomy (take out the voice box).

Radiation is not a good option since it didn't work and chemo is not a good option for squemasel tumors since it will just melt it and it will not be permanent.

Talked about a 4 hour surgery and 2 weeks recovery in the hospital. Will get a peg until the throat heals. Then another 2 week recovery at home.

Has to look at my records again, but is probably stage 1 or stage 2.

Success rate is 75% for 5 years, so I have dropped 5% since my first go around last year.

Will meet with a speech pathologist to discuss speech options. I am really worried about this part.

Also talked about a tracheoesophageal puncture I think.

I asked about clinical studies and he is not aware of anything, but told me he would help me get a second opinion if I wanted one. I have loads of health insurance, so that is no problem and I have my dad's house in Houston where I stay when I visit him in the nursing home. His house is about 30 minutes from the M.D. Anderson Cancer Center.

Any thoughts or advice are always welcome. Remember, I may have a mistake or two in what my doc said, but it was very clear about his recommendation. Take it out!
 
Posts: 124 | Location: united states | Registered: 25 July 2007Reply With QuoteReport This Post
Picture of Trev
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Hi! pete228,
I am sorry I can't give any advice but my thoughts are with you at this time. I have been given 2 - 3 years and I am going to give the years a kick along and push for gold.
As I said "my thoughts are with you"
Stay Strong
TREV
 
Posts: 393 | Location: Willaston Sth Australia Australia | Registered: 09 July 2007Reply With QuoteReport This Post
Picture of Mimi McC
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Ah, Pete, am so sorry to hear the news. I'm unfamiliar with the laryngectomy procedure but will do some homework to find out what you'll be encountering. Please let us know what the speech pathologist has to say.

As you can see, I have no advice but I'm rooting for you. A post of mine was in the top spot but this message should bump yours to the top where it belongs.

Best of luck to you buddy (or 'mate' in deference to Trev),

Mimi
 
Posts: 593 | Location: Sacramento, California | Registered: 16 January 2008Reply With QuoteReport This Post
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Hello Pete ,sorry to hear this news ,it really takes the wind out of you and the feeling of doom racks it way right through you ,I think a lot of us here have been through this .

I am not up to speed with this type of proceedure but my only advice to you is at this moment in time I would not dwell on the percentage rates at all .

When Paul's cancer returned and we went to London the top man there said that there were options to deal with it and once they were discussed as to which was the safest I asked him the question ."If this was you what would you do"? take the palliative care or opt for the treatment that is on offer .?

He said the cancer cells WILL grow and kill you, this treatment can hopefully deal with it .Every person is different and the results in a lot of cases do work so I would be taking the treatment .That answer did reassure Paul and I.

Ultimately the decision has to be yours Pete but where there is a treatment to posibly cure it can't be ignored .

I understand your feelings about post treatment and your speech .Pauls concerns this time were loosing his eyesight and also concrns about the aortic artery so there has to be an element of trust on both sides and also clear advice as about what the problems coud be post surgery how they would be dealt with and what to expect .

It would maybe be beneficial if you could have another meeting with your team and write down all your questions so that u get the answers to all the posible sonarios ,then I think you would feel more able .Also ask them to explain in full the whole proceedure and treatment again .
Please keep us updated Pete .

Thinking about you ,

Love Bell and Paul.
 
Posts: 338 | Location: Scotland | Registered: 11 September 2005Reply With QuoteReport This Post
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Pete, I just want to wish you the very best progress and a speedy recovery. Stay strong, all the best from Wales, Nigel
 
Posts: 74 | Location: Wales | Registered: 08 March 2008Reply With QuoteReport This Post
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Pete

So sorry you got bad news. Sounds like you have a lot to face, so this is just to wish you all the best and to let you know we are thinking of you.

Regards
Gwyn
 
Posts: 336 | Location: Leicester, UK | Registered: 02 December 2007Reply With QuoteReport This Post
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Again sorry to hear your news Pete Frowner Thinking of you.

Love Chloex


***Keep the faith***
Grow old disgracefully ;-)
 
Posts: 236 | Location: Milton Keynes UK | Registered: 27 May 2008Reply With QuoteReport This Post
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Hi Pete

Really sorry to hear read your news and wish you well.

I read an article a while back and have just dug it out don't know if it will be of help.

Article was about advancements in photo dynamic therapy (PDT).

A woman of 64 had a return of tongue cancer and it had spread to near or on to her voice box. She had already been treated with R/T and chemotherapy so they were no longer option, surgery was the only alternative with a very poor prognosis.

She luckily had read an article and asked to be referred to the National Medical Laser Centre at University College Hospital in London. The advanced treatment is a hollow needle allowing the laser to be shone down deeper into the tumour, allowing a deeper penetration of the PDT treatment.

The procedures are carried out under a Professor Stephen Brown and Consultant Colin Hopper, it goes on to say that it of course cannot be used to treat all types of tumours etc. The article also goes on to say the following

" So why is it still not widely available?

The answer from Hopper. Oncologist are used to giving drugs, radiologists have invested heavily in expensive equipment and surgeons are skilled in surgery".

I guess what he meant was they all have vested interests.

I don't know if this kind of treatment would help you, you could if you wish google the hospital and check more into it or if I can help in anyway please let me know.

The lady who had the treatment is still alive and doing well with little or no side effects.

Take care.

Tony
 
Posts: 222 | Location: Barton upon Humber | Registered: 26 March 2007Reply With QuoteReport This Post
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Really sorry to hear that Pete. Cant really add much to what has been said already. All the best, kick some cancer ass. Hagg.


Hagg.

16 years and still kicking it. Never give up your fight.
 
Posts: 1181 | Location: Devon,UK | Registered: 27 March 2007Reply With QuoteReport This Post
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Really appreciate the thoughts and good vibes about my situation. I guess I should change my profile to read "vocal cord" cancer.

Since my biopsy on monday, my voice is a steady whisper which is a lot better than a sometimes whisper.

I will be seeing a speech pathologist this coming week to give me some recommendations on the type of device i should try to replace my voice box which will be coming out. In the meantime I will continue checking around a bit.

later, pete
 
Posts: 124 | Location: united states | Registered: 25 July 2007Reply With QuoteReport This Post
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Pete,

There's a thread about the photo dynamic therapy that Kathleen (Tony) refers to:

Photo Dynamic Therapy

And another from the National Cancer Institute:

NCI

A Wiki link:

Wiki Link - Photodynamic Therapy

Lots of info, some controversy, definitely something to look into. According to one of the articles above, it has been around since the Eighties so perhaps if it were that good, our docs would be prescribing it more often. I know I can't second-guess them.

Good luck!

Mimi
 
Posts: 593 | Location: Sacramento, California | Registered: 16 January 2008Reply With QuoteReport This Post
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Hello Pete ,been reading the updates on your posts .Paul and I contacted Colin Hopper regarding PDT last year in search of another treatment to avoid more RT or surgery .This treatment has come a long way and in a lot of cases has been extremely successful .

He is a charming man and very thorough .In Paul's case his area was too deep for the PDT to very beneficial and all depends on size and depth .

Here is his personal e mail and I am sure if you e mail him he will get back to you .

Colin Hopper . c.hopper@ucl.ac.uk
This is also his secretaries number
TEL: 0207380 9862.

Sorry i am not sure what your telephone code would be .
I e mailed him regarding Paul and we was very helpful .Finally our ENT specialist contacted him as he had to send relevant MRI scans etc to find out if Pauls recurrence would be suitable for PDT .Unfortunately it was too deep for the light to penetrate as the facial bones etc and position was not easy to access .

It is definately worth looking into as the treatment is pain free mainly and the only draw back is to remain in a dark room till the injected or orally taken solution which activates with the PDT light leaves the body, this can take a few weeks depending on dosage .

Hope this has been of some help .

Paul and Bell .
 
Posts: 338 | Location: Scotland | Registered: 11 September 2005Reply With QuoteReport This Post
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Thanks so much Bell for passing this info on to me..... being in a dark room for 2 weeks would sure give me a case of the willies.... LOL...

however, what i am now facing causes me much concern. the reality of it has yet to sink in.

one of the things which is so crazy is that after i had my biopsy on monday, i have lost 5 or 6 pounds. i have been maintaining 178 to 179 and occassionaly 180-181 since May of this year. i weigh myself every morning and also check sugar & blood pressure. This is my routine..... whatever i weigh determines what and how much i will eat that day. this way i have been able to maintain my weight.

I am going to have my wife work on an email to Colin and see if there are any possibilities.
 
Posts: 124 | Location: united states | Registered: 25 July 2007Reply With QuoteReport This Post
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Hi Pete
You're doing things pretty tough at the moment. Sorry to hear that and just want you to know that we are thinking of you way down here.
Love to your wife as well, she must be worried sick for you.
All the best from Down Under
Deborah
 
Posts: 743 | Location: Willaston, South Australia, Australia | Registered: 09 July 2007Reply With QuoteReport This Post
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Really sorry to hear the bad news, Pete. I know how devastated I was when my cancer recurred in my cheek 15 months after major surgery on my lower jaw. All I can say is, I did trust the doctors on this one and here I am nearly three years later without a recurrence - fingers firmly crossed as I write this!!

I'm afraid I don't have much info on the laryngectomy procedure but just wanted to wish you all the very best and send you some positive thoughts.

Take care and best wishes
Sue
 
Posts: 43 | Location: Surrey | Registered: 09 January 2006Reply With QuoteReport This Post
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