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#19820 03-02-2006 01:15 PM
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pauljo Offline OP
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Hi I'm Paul from liverpool england age 53 and married to a beautiful supportive wife called Brenda.
It's nice to meet you all.

Brenda and I have been together for 25 years but having a busy country pub and restaurant we just never got around to getting married. Last year however we decided to make it legal. The wedding day was set for the 25th november and a carribean cruise booked for 26th november for 18 days.

I visited my dentist on 7th november 2005 (national oral cancer week) in the uk to get the teeth polished for the wedding. He spotted some white lesions under my tongue of which i wasnt aware. referred for small biopsy then a simple op on Dec 19th to remove the lump from front floor of mouth and that would be it.

2 weeks after the op i saw the consultant and expected the good news.

I was told there was more than at first thought.

I would be having a full neck dissection both sides and lymph node removal both sides. the entire floor of mouth to be removed and replaced with a radial flap from the forearm. the forearm tissue to be replaced with stomach tissue.Part of lower jaw and all lower teeth removed. 6 upper teeth removed. Titanium implants fitted. tracheostomy and stomach peg fitted. Peg still in place. reconstructive surgery to begin approx 6 months after the op.

Now had the op and all seems well.

Cant talk properly and cant eat solids but alive and happy to be so. the good news is that i might be escaping radiotherapy. Will know soon enough.
the first op took about 1 and a half hours the second op took 11 hours.

i had a million and one questions to ask before the ops but forgot them whenever i was with the consultant, i was too taken aback with what he had to say so if anyone has any questions i can help with or is facing a similar ordeal and i can be of help then ask away.
its great to know that a forum like this exists. i hope i can have some small input in times to come.

I have a scar running from ear to ear, my neck is like a car tyre, i sound like the elephant man and i feed myself through a peg tube in my stomach.

But I am aware that there are people worse off than me.

My perspective on life has changed, things that were so important are not now.

I was told that i have one lymph node that is positive and that it was one of the ones taken out so i feel that i have a lot to look forward to. I hope to be contributing something to this forum whenever I can. it really is good to be able to write things down and also to read about other peoples experiences.

kindest regards to all,

Paul

aged 53 SCC stage III surgery but probably no radio or chemo therapy. Alive and happy.


SCC. floor of mouth part tongue. Radial forearm flap, 1 node pos. radical neck sec both sides. surgery jan19th. Stage III. Alive happy and smiling, just realised what life really is about.
#19821 03-02-2006 01:34 PM
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Paul,

As others on this site say, "welcome to the club that nobody wants to join."

Your experience sounds a lot like others that I have read on this site. Your positive attitude is to be commended.

Since I found this site a few months ago, I can tell you that you that I have found the people who participate on this forum to be some of the most sincere, compassionate, knowledgible people that I've had the privilige to encounter anywhere.

I wish I would have found this site much earlier in my treatment.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19822 03-02-2006 03:35 PM
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hello paul,
welcome to this unique club that we all find ourselves in. You have found your way to a very cool site, cool in the way that there are a ton of helpful, knowledgeable, supportive and kind people here, you are now one of them. I have found this site to be so helpful for my own questions, but unfortunatly there will others behind us, that is where we all come in. Since you have this illness glad you found us.
lenny

#19823 03-02-2006 03:44 PM
Joined: Apr 2005
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Paul, I too hope you will stay with us here. Your experience and courage will help many people. I have a question. If I read the above right, you were fitted for titanium implants during the 2nd surgery. Is that a standard procedure in Endgland? We keep asking John's surgeon about the possibility of implants down the road, and all we get is "lets wait and see" Hope you and Brenda are still planning that cruise smile Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#19824 03-02-2006 09:16 PM
Joined: Mar 2006
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pauljo Offline OP
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Hi All many thanks for your kind welcome,

Hi Amy, yes you read right, on my second op there was apart from others, a dental reconstruction consultant and he removed the teeth and put in 6 ( i believe) titanium implants. the idea is to do everything at once. also the titanium implants fuse in to the jaw bone. then in a few months they will sculpt the floor of the mouth flap and shape the gum and jaw then prepare and fit the new teeth. they clip on to the hopefully imbedded implants.

The hospital that performed my surgery is a University hospital and they had to apply for special funding for the implants. i was told it cost about


SCC. floor of mouth part tongue. Radial forearm flap, 1 node pos. radical neck sec both sides. surgery jan19th. Stage III. Alive happy and smiling, just realised what life really is about.
#19825 03-03-2006 05:37 AM
Joined: Mar 2004
Posts: 417
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Paul, a hearty welcome to you...
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#19826 03-03-2006 01:25 PM
Joined: Nov 2002
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Paul,
welcome to the forum, in the US, Stage III would almost always include adjunctive chemo and radiation, especially with a nodal involvment. If it were me, I am not so sure that I would want to "escape" radiation and chemo. Recurrences can be very unforgiving.

Here is a link to the NCCN oncology practice guidelines which are pretty much the US standards of care. http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Definitely a choice you have to make and very carefully consider. I would get second opinions.

If you do choose radiation you should be recovered enough to still make your cruise.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#19827 03-04-2006 09:56 AM
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Hello Paul
My Hubby is also from Liverpool, Anfield Rd,
( Guess who he supports!) although we have lived in the States for about 25 years.
Are you getting your treatment thru National Health Paul, or are you going private?
The reason I ask is , like Gary , I would have some questions regarding your treatment protocol. I cannot imagine that you would not be having Chemo/radiation. Especially considering your staging.
I know getting a second opinion is not easy with NH but, if you can arrange for one privately I would do so post-haste.

Apart from that welcome Paul, nice to meet you.

Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#19828 03-04-2006 11:28 AM
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pauljo Offline OP
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Hi Gary, Hi Marica,

I am having my treatment thru the national health.

On the subject of " To radiate or not to radiate" there seems to be a change in attitude over here regarding surgery/chemo/radio. The recent norm was to do a belt and braces job i.e. surgery follwed by radio or chemo or all three. however, because oral cancer SCC has a high reoccurence rate the feeling is now that there has to be a bullet kept back.

in my case i was told i would be having quite major surgery ( 11 hours) and there is no way they would attempt any other treatment for some time but then i would be having radio therapy for approx 4 to 6 weeks. the number of sessions wasn't mentioned at that time.

I was discharged from the hospital one week after surgery and on the day of discharge the consultant told me i might not be having radiotherapy if the pathologist confirmed his opinion.

He then told me i wouldnt be having r/therapy as the tumour on the floor of mouth was removed with a large clear margin and the only positive node that they could find out of 34 nodes removed contained only single encapsulated cells, this had been confirmed in pathology.

This then, he said, gives the radiographer nothing to aim at. He also said that the opinion at the hospital is that sometimes radiotherapy causes more problems than it solves, especially when , as in my case part of the tongue is involved.

At this moment my speech isnt right but i can be understood if I speak slowly, i can drink but cannot eat solids (still feeding thru peg), my consultant believes that both of those could be affected using radiotherapy.

Also If i were to have radiotherapy now then it would be a long time till i could have it again if it was subsequently needed through reoccurence, if on the other hand it is not given now then it is another string to the bow.

Also r/therapy in the oral cavity rules out any surgery in the near future on that site if it was needed. there is only so much even a healthy body can take.

I have in no way tried to influence their decision on further therapy but i can see the sense in not trying to fix something that is not evidently broken.

Anyways, thank you both for your comments and kind welcome. by the way Marica Liverpool football club could only manage a draw today but if thats all i have to worry about, ah well.

Good luck to you

and kindest regards

Paul


SCC. floor of mouth part tongue. Radial forearm flap, 1 node pos. radical neck sec both sides. surgery jan19th. Stage III. Alive happy and smiling, just realised what life really is about.
#19829 03-04-2006 01:21 PM
Joined: Nov 2002
Posts: 3,552
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With a socialized medical system I am not surprised. RT over here is around 300K US.

When I orginally Dx'd they told me a 14 hour surgery and after three weeks or so they would have to raqdiate everything anyway. My odds were actually slightly better, due to infection risks, etc., so we went with radiation and chemo only. It's worked good for over 3 years now...


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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