Hi sub-tongue SCC 3 yr post op also scoliosis - 05-29-2015 10:42 PM
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.
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.
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 !