| Joined: Mar 2011 Posts: 4 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Mar 2011 Posts: 4 | Hi I'm new to the forum, I had my op. 25 days ago, half my tonge removed,all my teeth 22,the whole base of my mouth,part of my jaw bone, and some lymph nodes from my neck, they took a flap of skin and some artery from my left wrist to form part of my tongue and gum and fitted a titanium rod to form my new jaw bone, I have gone through the surgery really well and was back home after just 14 days the swelling has gone down in my face and apart from having no teeth i don't look much different to before I had the op. but i know that there is a long way to go, I will be seeing the surgeons for the first time as an out patiant on Thursday next. I would just like to link up with one or two people that are going through similar so hopefully we can help each other along, thank you for reading this. | | | | 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 | Hi Dusty! You have found a great site for assistance. What you have gone thru isnt something too many have had to do. I have some similarities to you but I had my big surgery 18 months ago. My teeth were removed 2 years ago. To me, it sounds like you are doing absolutely fantastic!!!! I had alot of complications and was in the hospital for 2 months after my surgery. I was kept in a medically induced coma for 3 weeks. One huge difference is that I also had previously gone thru 2 rounds of oral cancer already. After such a big operation, it can take months for the swelling to go down completely. It sounds like everything has turned out very well with your surgery! Will you be having radiation?
Keep up good nutrition and try to get extra protein in your diet to help with the healing. I use high protein powder found in any drug store or grocery store. It mixes easily with any liquid. Best of luck with your continued recovery. 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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Dusty - welcome, and wow. You have really been through the ringer. But you've come out with your brain and optimism intact! We'll all be interested to hear what the surgeon has to say. Will you be doing any chemo or rads?
If you get a chance, for future posting you might think about making yourself a signature with a brief description of what you've been through. Christine's is a model example.
Hang in there, buddy.
From (way) across the pond, David2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Dusty, I had some my teeth taken 3 1/2 yrs or so ago for rads, chemo and rad seed implants. One thing for sure is that your nose will get to know your chin as friends in a few months. LOL You are doing good for what you have been thru. Just keep that attitude and you'll do fine. I lost a part of my tongue on both sides after a reoccurence, had the neck dissection with a few nodes taken. The worst thing I have is the severe rad and chemo burns and scarring. About to lose ,my lower left jaw after another major surgery and a feeding tube. Good luck man and my best to ya.
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: Mar 2011 Posts: 4 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Mar 2011 Posts: 4 | Thank you all for your kind words and warm welcome, I will add my signature as you suggested David as soon as I can work out the abbreviations thanks once again. | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | [quote=Dusty146]Thank you all for your kind words and warm welcome, I will add my signature as you suggested David as soon as I can work out the abbreviations thanks once again. [/quote]
Dusty, there's a thread that explains them right here in the introduce yourself forum.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2010 Posts: 17 "OCF across the pond" Member | "OCF across the pond" Member Joined: Nov 2010 Posts: 17 | Hi Dusty, I had a slightly easier time than you but I'm guessing at the same hospital (Manchester Royal Infirmary). My op was almost a year ago and I am amazed at how well the scars have healed. I'm guessing you will be getting a decision on whether radio-therapy and/or chemo is required at your appointment. If you do need it, it will give you an unpleasant few weeks but its a temporary phase which will pass. Feel free to get in touch.
Diagnosed Early April 2010 SCC left tongue t3n1 PEG insertion 26th April 2010 Patial glossectomy with flap from arm and left neck dissection 28th April 20 sessions of radiotherapy in June PEG removal Today - yippee! 19th Nov
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Wow a sudden influx of Brits .How wonderful.As the token Brit on OCF for the last five years i would like to say welcome to you both.I am also a member of the Bradford based Mouth Cancer Foundation which is a smaller support group,but i have to say information,knowledge and support on this site is second to none,once you have got your head around the differences in our respective health services.
once again welcome and i hope all goes well for you xx
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Mar 2011 Posts: 4 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Mar 2011 Posts: 4 | Hi Martin Yes your correct i was treated at the MRI (a lot better than Stepping Hill in my opinion) My OP was 5 weeks ago today I attended Christie's yesterday to see Dr Yap then I go on Friday to have my Mask fitted for 6 weeks of Radiotherapy, I'm glad your scars have healed well, I only have a bit of doubt with one of the scars on my neck as I got an infection in it and it seemed to have healed with a strip of internal flesh sticking out from the main scar. I am amazed how quick things have happened since I went to the MRI. as proceeding despite me being in total agony for three and a half years, Stepping Hill discharged me as fit.Its always nice to talk to someone who has been through the same thing Thank you for contacting me, I cant put a signature on here because I still don't know how lol Regards Bob. | | | | Joined: Mar 2011 Posts: 4 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Mar 2011 Posts: 4 | Thank you for your welcome, If it did hit me in the mouth just now I don't think I would feel it lol. | | |
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