| | Joined: May 2010 Posts: 2 Member | OP  Member
Joined: May 2010 Posts: 2 | Hi -
I'm here for my boyfriend: he's 51, recovering alcoholic (three years plus sober); living with Wernicke Korsakoff syndrome, which affects his walking but not his very sharp mind, former heavy smoker, now light smoker, about to become (hypnosis etc) ex-smoker, due to diagnosis these past weeks of a SCC based on his tonsil. We don't do stages as such in the UK, but the treatment we're being offered by a really good hospital in London is the mandibulectomy and fibial reconstruction, followed by radiotherapy if need be, so I suppose it's quite far along. Hasn't metastasised though.
Questions:
1) They say they can operate within a month - I'm fretting about how much worse it could become in that time. He's in considerable pain, and taking loads of stuff for it.
2) Has anyone here any experience of WK syndrome and cancer as a combination? It would be so good to know if there is anything we should watch out for.
3) Anyone know if there's an AA cancer group? Though as we're not in the US, perhaps we should be looking for that over here.
4) This five-year survival period that people talk about. It seems to have a big significance, but I don't know what that is... ??
Thanks - and just looking through the posts I've already found so much that is helpful and supportive.
LouK -
I'll fill this in when I've learned the lingo.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You will hear from one of your countrymen or should I say a very smart lady. She will have ansers for you I bet. Her name is Liz.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | If the cancer is located in his tonsil then why so much surgery?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. There is lots of info not just here on the forum, but also on the main pages as well. While things are different there, it still is a good idea for a second opinion and to be treated at a cancer center.
I have never heard of WK before. I put it into the search bar here and on the main pages and nothing came up so it doesnt seem to be anything related to oral cancer.
My question mirrors Davids. Why is your boyfriend having such a big surgery if the cancer is in the tonsil area? A mandibulectomy with using the fibia bone for the jaw is for people who have cancer in their jaw area and have a piece of their jawbone removed. Ive been thru this operation due to OC in the jawbone.
Although you are in the UK, there are several members here who are from there and may be of help. Maybe searching on the UK AA's website would give you some info.
The 5 year mark is significant for any type of cancer. It means there is less of a chance for recurrance. Its a statistic, it isnt anything to be concerned about now. Also statistics are just numbers.
No one should have to suffer in pain. Many patients here use the fentanyl patch which give continuous medication and needs to be changed every 72 hours. Its the strongest pain med out there.
Best of luck with everything.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2010 Posts: 2 Member | | OP Member
Joined: May 2010 Posts: 2 | Probably I didn't express that right: it is *based* in the tonsil, but is big - into the palette, oropharynx, tongue and so on, and as the doctors put it 'nibbling into' the bone. They want to remove a section both because the bone is cancerous (not, they say, a separate cancer, but the same SCC) and for access to the tumour. All the surgeons (three) and two oncologists agreed it was necessary... But you've made me think yes, we can check with them how much they intend to take out.
Wernicke Korsakoff is a syndrome of nerve and brain damage resulting from malnutrition, in particular vitamin B deficiency, usually associated with alcoholism, so there can be an overlap with alcohol-related oral cancer, though there is no specific connection. The reason it is so little known is that mostly people who get it die of it; there's no survivors' forum that I can find on the web. My young man seems very unusual in being a pretty-much fully functioning WK survivor, and we're always looking out for another somewhere out there....
Thanks for the tip about fentanyl. I'll enquire about that.
all the best from London -
LouK
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
