Previous Thread
Next Thread
Print Thread
Joined: May 2015
Posts: 4
Jan123 Offline OP
Member
OP Offline
Member

Joined: May 2015
Posts: 4
Hi My name is Janet. Sorry this is a bit long - I am not known for my brevity �.

Had laser treatment for dysplasia sub-tongue 2008. Autumn 2010 I noticed changes in the white scar tissue - they biopsied but found nothing. May 2012 there was a definite 1cm diam changed patch - they biopsied again and found it. SCC floor of mouth. Surgery July 3 2012; took 3 cm diameter area including 3 teeth RHS and a sliver of jaw bone RHS; bulky sub-tongue skin graft from my left arm. Right neck dissection. No radio- or chemo-therapy. There were 2 metastases starting to move off which hadn't; the excised teeth, jaw and lymph nodes were all clear.

I think the surgeons were OK though I wish I had found this website and realised here might be other surgical possibilities but so far it does seem to be gone which I am grateful for (MRI May 2015). My experience in hospital at the time of surgery was not so great; I think a few medical mistakes were made including with my tube feed - the dietician hadn't believed I had a milk allergy (she said so) and maybe hadn't prepared properly; she gave me a fat-free vitamin and mineral supplement - only - which stated clearly "Not for sole nutrition" when I couldn't keep down the first tube feed. My tongue seems to have got bigger in the 2 yr 9 mth since the surgery but maybe that is because it is now quite numb; the new teeth and overlays don't really work well (I think my jaw shrunk before I got the implants Sept 2013, my teeth don't meet up on the RHS and the teeth levels seem to stop my jaw moving side to side so I crush rather than chew) but with the help of a slow cooker and a good small blender which manages well with nuts and raw veg I am coping fine now after spending some time on nutrition because of my changed food abilities and tastes.

Really my biggest problem is my C- shaped scoliosis (twisted spine) which I first noticed Oct 2012 and which I think might be linked to the "tube feed" which had only around 360 mg daily calcium but as it was fat free presumably no vitamin D and virtually no calcium would have been absorbed. The scoliosis was 59.7 degrees at diagnosis Feb 2014; by reassessment March 2015 was 59.9 degrees so hopefully is now stabilised. This is quite high and causes me problems especially later in the day but no intense pain (I exercise daily) so it could be worse. Osteopenia was diagnosed June 12 but it had moved to osteoporosis by June 14 despite a good diet (lots of fruit and veg and no junk) normally - I hope the next Dexa scan in 2 yr will show the osteoporosis is at least no worse. I also have (unrelated) atrial fibrillation but it is well controlled if I have a fruit breakfast and plenty of water through the day, starting with 500ml on waking, and avoid concentrated carbs; if that fails I use a liquid calcium-channel blocker which stops it within 1 hr if I rest until it's gone. I have a fairly severe milk protein allergy and wheat intolerance (not gluten - the Array 3 test for gluten was -ve). I have no dependents and no real money worries so am lucky - I have one adult daughter who lives 3 hours away but who rings daily and 2 younger friends sharing my house who are very kind. I was a clinical biochemist/toxicologist until age 25 which helps a lot with medical info etc. and which is how I think I survived hospital though I did end up in the HDU at one point. However despite the mainly positive situation I have been irrationally depressed because of the effects of the scoliosis.

I have found the postings on this site so interesting and thought I should say something about myself rather than just reading the posts anonymously. If the scoliosis tale is uninteresting maybe it makes a cautionary tale - choose your hospital with care and not just your surgeon! If my cancer were to return I would definitely look at having robotic surgery, or the Mohs technique if that is possible, neither of which I knew about previously. At another hospital and in London where my daughter could visit daily and speak for me if I couldn't. It is so hard when you are confined to bed, your communication pad has been placed out of reach and you are being given treatment which you think is wrong but can't tell anyone until a crisis has developed. Though our UK NHS is good in that we pay for it via taxation and not insurance and everyone has access to it irrespective of means.

Last edited by Jan123; 05-29-2015 03:52 PM.

3 Jul 2012 aged 66 Stage 1 sub-tongue SCC excised (cancer 1cm diam. + 1 cm margin + 3 teeth + sliver of jaw bone; right neck dissection 19 lymph nodes; sub-tongue skin graft from left arm). No RT or chemo but pur�e most food, esp. recently. MRI tongue May 2015 - clear. High raw diet but not fully vegetarian. Scoliosis (first noticed Oct 2012, now stabilised I hope at 59.9 degrees; this is my main problem). Also well-controlled atrial fibrillation. Ex clinical biochemist/toxicologist.
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
It's not pleasant having other health problems on top of the after-effects of cancer surgery. Yes, it is hard to communicate when a trache is in place and to think the wrong nutrition might have caused the spine problems makes it worse. Good on you for exercising each day. And commiserations. We are all in this together:)

Maureen


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Jan, welcome to OCF! Its always great having another OC survivor join our group. Im glad you decided to post and make yourself known. We are like a gigantic online family. Ive made many life-long friends from all around the world.

You have been thru alot and explained it very thoroughly. Ive been here for close to 8 years but cant remember hearing about scoliosis occurring or being associated with oral cancer. Thank you for sharing this with us.




Christine
SCC 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 smile
Joined: May 2015
Posts: 4
Jan123 Offline OP
Member
OP Offline
Member

Joined: May 2015
Posts: 4
Hi Maureen,

Thanks for your sympathy.

It was the wrong meds that I couldn�t communicate about; the nutrition was because the right nutrition had to be ordered and hadn�t been. But luckily the damage done by the meds seems to have been temporary, thanks to the insistence of my daughter and my friends in getting them stopped in time. And the care on the HDU was as good as the care on the ward had been bad.

It�s so nice that you say we are all in this together smile When I read other postings I realise how lucky I have been so far with the cancer. But everyone is so cheerful - I need to learn from that !

Last edited by Jan123; 05-30-2015 01:22 PM.

3 Jul 2012 aged 66 Stage 1 sub-tongue SCC excised (cancer 1cm diam. + 1 cm margin + 3 teeth + sliver of jaw bone; right neck dissection 19 lymph nodes; sub-tongue skin graft from left arm). No RT or chemo but pur�e most food, esp. recently. MRI tongue May 2015 - clear. High raw diet but not fully vegetarian. Scoliosis (first noticed Oct 2012, now stabilised I hope at 59.9 degrees; this is my main problem). Also well-controlled atrial fibrillation. Ex clinical biochemist/toxicologist.
Joined: May 2015
Posts: 4
Jan123 Offline OP
Member
OP Offline
Member

Joined: May 2015
Posts: 4
Hi Christine,

Thank so much for your welcome.It�s lovely that you call it a gigantic online family. The internet is a great thing, uniting people who could otherwise never meet.

I think my scoliosis was just bad luck - the combination of my milk allergy and the right tube feed not having been ordered. I must also have had a predisposition towards scoliosis as otherwise I don�t think it would have happened. I eventually found a preventive Canadian brace but got it too late as my breathing is affected a little and I couldn�t breathe in the brace - I think if I had got it immediately I realised my back was changing it might have stopped the progression.

You seem to be quite a fighter to have bounced back the way you seem to have - well done smile


3 Jul 2012 aged 66 Stage 1 sub-tongue SCC excised (cancer 1cm diam. + 1 cm margin + 3 teeth + sliver of jaw bone; right neck dissection 19 lymph nodes; sub-tongue skin graft from left arm). No RT or chemo but pur�e most food, esp. recently. MRI tongue May 2015 - clear. High raw diet but not fully vegetarian. Scoliosis (first noticed Oct 2012, now stabilised I hope at 59.9 degrees; this is my main problem). Also well-controlled atrial fibrillation. Ex clinical biochemist/toxicologist.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi... welcome... despite it all you sound like you are doing well. I would ask maybe if there are any adjustments that could be made to your teeth. Jaws etc are hard as the muscles involved could atrophy a bit. Maybe keep stretching and working it. As for tongue swelling it could be a number of things... the tongue is a muscle to so you should maybe see physio about exercises to get the blood flowing and such. that may help reduce the swelling. Hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5