Please help.
I am scheduled for a hemiglossectomy/neck dissection/peg/+\- trachy\radical forearm/free flap procedure on Tuesday next.
However I understand that others have been successfully treated with a course of Radiotherapy.
I was not given a choice but would like to know if I should persue the therapy alternative?
Any views?
Many thanks for reading this.
Gerald

Gerald, I've completed all that you have mentioned as your upcoming treatment.

The rule of thumb with the doctors Ive worked with was.... "If it is operable, cut it out and treat the margins for residual cells"

I like you visited every option prior to agreeing to the surgery, but have found that even with radiation treating the margins, the cells are too small to ensure a CLEAN or THOROUGH job by radiation alone. The cells may be outside of the radiated zone in which case the therapy is not effective.

Agreeing to the surgery is a daunting task as mentally (emotionally). But know that I have no tongue today and I'm able to conduct business on the phone every day of the week.

The other thing about having the surgery first and confirming no cancer in the lymph nodes of the neck, allows the radiated portion to be smaller in scope. Radiation is NOT the easier of the two treatments. Surgery is something you recover from in a few weeks,.....the radiation is something that will put you down for months....not the easier or more effective way to go.

Sorry if I"m sharing too much...but I wanted to share my experience without sounding like a "know it all". I've been on this road for over four years now and wanted to share.

Best wishes,

Bob

Bob,
I much appreciate your time and comments and feel somewhat better about the procedure now.

I'll probably stay with that course of action unless Ihear otherwise.

Good to know that you're doing well.

How do you talk with no tongue?
Best regards
Gerald

The flap they provide from the arm helps to allow swallowing and I suppose articulate words.. I have trouble with "k's" and hard sounds where the tongue would go to the roof of the mouth,....but in general I'm 90% understood and repeat major points....I tend to get lazy at the end of the day and not so well understood then....so it takes an effort...as well as I must slow down from my normal rate of speech....the brain is racing, but everything must slow down to enunciate well......so technically,...I don't know how it's done...but it's happening...!! thankfully.

The road ahead is a tough one, you'll need to "rise up" to meet the challenge. Just know you are not alone, nor the first to make the trip. So be encouraged and provide updates on your progress when you can.

Bob

thanks again Bob for your reply.

Can I ask whether you smoked before or after the operation?
Gerald

never have..... as a teen a tasted a couple of smokes....as a young adult...tasted a cigar....

but as a rule...never smoked.

Hi Gerald

I too went through the same op as you are about too, 18 months ago, however I did not have a peg and my free flap was taken from my leg.

When I look back I still find it hard to believe how easy getting over the op seemed. OK the first couple of days I didn't know much about cos they tend to keep you dosed up with morphine but the recovery was good and in my opinion quick when you bear in mind how long the op takes and what they have to do.

The tongue was great until I had the radiotherapy and it was that, that made it very sore. My consultant only gave me the radiotherapy because they could not get a clear enough margin round the area because it was at the base of my tongue, although they did warn me before the op of this possibility.

Is your consultant fairly confident that you will not need RT or has he not said anything about it. Bob is right getting over RT takes far longer.

I wish you all the best for your op - will be thinking of you. Keep us updated.

Sue

P.S Bob, I think you are amazing and I know what you mean when you say you get lazy at the end of the day. My speech goes downhill after lunch and I have problems with C's S's Th's and several more, but nevermind. Also a lot of my work is done over the phone.

Sue,
God bles you, thanks for your text. and well done.

Most reassuring.

I'm committed to the procedure now but am glad to have had an alternative to think about and make a decision myself.

Consultant said the RT MAY be needed. I suppose on the results of the lymph nodes analysis.

Am feeling good about this aqnd can't wait to get it over and then get on with the enxt phase of my life.

I play sax. in a small jazz band, pretty badly, and hope that I will still be able to do this. I'll have to wait and see. Its not the end of the world if I can't ... will have to find another amusement.

Love to yu both.
G

What great positive posts, pembo and Sue. Well done to you both.

Gerald how good for you to hear from two people who have been where you are who are getting on so well with their lives.
It's tough but you'll get there. I wish you well.
Cheers from Down Under
Deborah

Many thanks Deborah.

I look forward to the next Test, at Edgbaston!
G

Gerald,

I have been in your shoes actually within the last year!

I was diagnosed in November 08. I had the hemiglossectomy and the neck dissection December 4 2008. One lymphnode positive therefore radiation therapy. I did 32 treatments. The surgery was much easier than the radiation.

I was good until the third week of it. That is when the blisters started in my mouth. Word of advise this helped me so much during radiation I used an after sun lotion with aloe and vitamin e after treatments and I didn't burn on my neck at all! no blister, no weeping and just one little dry area. But nothing on the skin during treatment.

I didm't have to have a flap my tumout was on the left edge of my tongue.

I went back to work in April, have had follow up CT and PET scan which they say was clear!

So just as a helpful story I have been thru it and I am now back to work my only speech issue is my s's sound kinda slurred. But that's it and when my mouth is really dry I don't speak well but water helps with that.

I hope my story helps and if you have questions or need advise feel free to ask.

They made me decide the day before surgery if I wanted to do the neck dissection. Being a woman the thought of my neck cut open was hard to take but my scar is already barely noticable. If they pucker your incision massage it after the staples and or stitches are out it will help the skin relax and flatten. Just a tip a nurse at my pediatrician told me.

Good luck and stay strong!

Pam

Hi Pam,
thank you so much for your input.

You seem to have done really well.

I'm prepared for a rough ride and beleive all will be OK.
Thanks
G

hi gerald
i can't offer an opinion here as i had chemo and radiotherapy but you have been given some very good input from our members who have been there.i just wanted to wish you all the best. kindest regards shirl xxx

Now, now Gerald. Here I was being nice, friendly and wishing you well and you have to go and bring up the cricket! Not the best way to get our friendship up and running. Tee hee.
No, honestly I'm really happy that the Poms are having a moment in the sun. Afterall, it's taken 75 years to get there.
All the best (personally and with the next test)
Cheers
Deborah

Hi Gerald

I had pretty much the same operation four and a half years ago that you're facing now (except I had a nasogastric tube instead of the peg) and the outcome has been wonderful. RT was never an option for me--but that might also depend on the stage of cancer.

I don't know how your docs are planning to do the procedure, but mine was done all in one go; this surgical marathon was probably not their idea of a good time, but I didn't mind (I was asleep, after all). The left side of my tongue was replaced with a piece of my right forearm. I don't have any actual complications, but from time to time my flap cramps up (the only way I can describe it) and I have to cough hard to get rid of it. Eating, unfortunately, is not a problem. My sense of taste has not been affected, although spicy food makes my flap tingle.

Like Pam, my dissection scar is barely noticeable--it looks like a natural fold in my neck.

Welcome, and please know that you're not alone in this.

Julia