Pathology Results from Operation
Everything completely cancer free. 35 nodes levels I to V, all the soft tissue from my neck, tonsil and BOT all completely clean. This was a really good outcome. Firstly this means the outside chance that I am one of these rare cases in which the primary never shows becomes a genuine possibility. Having had a completely clean PET scan, MRI, CT scans - the tonsil and BOT are areas which can be missed by PET; there tends to be activity around them where the cancer can hide. As I have MEC the number of places it can show up is limited to where salivary glands reside. He said that the only real place that it is likely to turn up now is the major parotid gland - however he said it is unusual for PET to miss it in there as there is no activity to fool it.
Another major plus about this outcome is that the delays I had in diagnosis, they didn't cost me. It didn't spread to any other nodes and was walled off nicely by my immune system. Mentally that's a big thing for me too. And the final major plus is that I don't have to have any treatment - no rads or chemo as there is nowhere to aim the rads and chemo would be 'totally overtreating me' based on the type and grade I have. If it turns up it moves so slowly they can probably remove it clean with surgery by taking the parotid out before it does much, so chances are this cancer may never lead to treatment. The plan going forward is for me to have 4 monthly ultrasound MRI scans with particular attention to the parotid for a total of 12 months. Then regular check ups after that.
So there is still an element of uncertainty - but tell the truth, this feels pretty bloody good to me. No treatment, no spread, a very manageable situation even if it does show. When I have healed from the operation I csn go back to leading a normal life for awhile. It will of course be in my thoughts, but the professor said there comes a point now in a situation like mine with a slow moving, indolent cancer which if it exists is so small it can't be seen on any form of scan and I'm under surveillance - that my chances of being killed in a car crash or falling down the stairs are greater than this doing so. Instinctively I think he believes that may be it for me although he didn't come right out and say it of course; he said the idea has been 'reinforced'.
What my plan is for the next 12 months is to eat incredibly healthy, and perhaps try some herbal / alternative options to see if I can give my body a chance to get rid of it if something's is still hiding away in there. I certainly don't see the harm and it will make me feel like I am doing something to help things in the right direction. So I am kind of getting off the bus, at least for a little while. However I am going to be on here every day supporting my fellow newbies, especially phrannie, ditto and mrs sarge.
I'd also like to say thanks to some of the more experienced posters - tommyodavey as a fellow MEC sufferer has been fantastic, and the likes of Kent, Tonsil Dad and skiffin have always been along with positive words and encouragement. This board is an amazing place full of amazing people and I may of course be back on the bus at some point in the future, but for now I just wanted to say thanks for everything and very best of luck to those still moving forward. I will be here every day without fail even in this period of not much happening at my end.
All the very best
Leo
Comments
-
thanks fornthe reminder
that not all luck is bad. Keep the faith, bro.
Pat0 -
terrific news!
Thank you for sharing, Leo.0 -
fantastic news!!!Noellesmom said:terrific news!
Thank you for sharing, Leo.
Great news Leo, like I said on your first post you will live to take your grandkids
Let alone your kids to Anfield one day.
Im very, very happy for you, now go and enjoy life once more.
Read my profile about alternatives.
God bless
Tonsil Dad,
Dan.0 -
I'm sitting here all choked up....
with HAPPINESS!! Oh Leo, what incredible, WONDERFUL news!! If you were here, this would be worth a polka around the kitchen!
YES YES YES....to your plans of looking into holistic/alternative means to boost your immune system, to build up your body for anything lurking but unknown. I would do the exact same thing....the whole experience will bring you to a new normal, too...about your health, how you view life in general...Gawd, I am so happy for you!!
I'm glad you're sticking around, too...there's always cheerleaders on the players bus, ya know....
p0 -
Leo
This news is great to hear for all of us. Something about us unknowns? Oh yeah, Leo- hope this scare will bring any changes you can make to lessen the risk going forward, like most of us have done post-tx, like eating healthier, better hygene, and looking for the first signs/symptoms, along with appreciating life a whole lot more...Life with forward movement really is a great thing, Leo- and you just a priceless ticket, my friend. Know for a fact you are most welcome to hang around and put in your $.02, like we all do, and every one of us is truly happy for you and the results. Awesome.
kcass0 -
Congratulations!Kent Cass said:Leo
This news is great to hear for all of us. Something about us unknowns? Oh yeah, Leo- hope this scare will bring any changes you can make to lessen the risk going forward, like most of us have done post-tx, like eating healthier, better hygene, and looking for the first signs/symptoms, along with appreciating life a whole lot more...Life with forward movement really is a great thing, Leo- and you just a priceless ticket, my friend. Know for a fact you are most welcome to hang around and put in your $.02, like we all do, and every one of us is truly happy for you and the results. Awesome.
kcass
That's just the kind of thing I needed to hear. Thank you for coming and posting!
BTW, have you read Anti-Cancer? It's a very moving book by a doctor who had brain cancer. He did a ton of research on dietary and environmental factors. It's an easy read that hopefully can help us steer away from future encounters with the ten-ton truck of cancer.
http://www.amazon.com/Anticancer-New-Life-Edition-ebook/dp/B002YER008/ref=tmm_kin_title_0?ie=UTF8&m=AG56TWVU5XWC20 -
This says a lot
First, congratulations on your clean scans and biopsy, and I hope your healing from the operation is fast and uneventful. It says a lot about the strength of community when someone gets his 'ticket' to get off the bus and could leave this all behind, but makes a commitment to check in and see how others are doing--especially the many newbies who've come on board recently. While we all need the support that's given here, the newbies need it the most.
Mike0 -
Bus-stopsMikemetz said:This says a lot
First, congratulations on your clean scans and biopsy, and I hope your healing from the operation is fast and uneventful. It says a lot about the strength of community when someone gets his 'ticket' to get off the bus and could leave this all behind, but makes a commitment to check in and see how others are doing--especially the many newbies who've come on board recently. While we all need the support that's given here, the newbies need it the most.
Mike
I found your post uplifting and you and your doctor have a fantastic open line of communication. Wishing you fewer bus stops in the future!0 -
Thanks Allratface said:Bus-stops
I found your post uplifting and you and your doctor have a fantastic open line of communication. Wishing you fewer bus stops in the future!
Thank you so much for the kind words everyone, good news is very nice to share. Laralyn thanks I will make sure I pick that book up.
And Ratface - my doctor is amazing. He's like a 6"4 tall, giant shaven headed angel - blessed not only with genius (awarded professor both for achievement in H&N surgery and learning) but amazing people skills and presence. Not once did he end a meeting with us, he let me and 4 of my family into the meeting the day I was diagnosed and let us ask every question we all had until we had finished. Everything - we basically said ok that's all we've got at the end. It was after 6pm and he still had many people to see - he was giving that time to everyone.
As for his skills. He took out 35 nodes - literally everything on one side of my neck and I didn't lose a single ounce of function, practically nothing at all aside from the most vague of stiff shoulders. I lifted an 8kg free weight with my left shoulder a week after the op, it's completely normal. Having read other stories about dissections I told him I realised just how good a job he had done for me yesterday - his reply was a very modest 'probably more luck than judgement'. Right yeah I'm sure. He is also driving national policy in the UK including pushing the government to introduce more of the accurate beam radiotherapy machines across the uk, and is the founder of the largest centre for the use of transoral laser treatment of head and neck patients to save function. He did my tonsil and tongue with the laser beam and the tonsil had healed after 7 days.
The guy exudes positivity and presence, he is an amazing man and I have been truly blessed by him treating me. With him looking after me and finding this place for moral support and practical advice I feel like I have been incredibly lucky. I just wish everyone else here the very best and want to give some back. I hope I can help people with pending dissections, tonsillectomy or BOT biopsies or anyone arriving with MEC trying to understand it. One of the benefits I can pass on here is what knowledge I have gained from him.
Most of all I want some of my fortune so far to rub off on my fellow newbies. Phrannie I've got my Pom poms and I'm on the bus. Give me a P - give me an H! :-)
All the best
Leo0 -
YesLeoS2323 said:Thanks All
Thank you so much for the kind words everyone, good news is very nice to share. Laralyn thanks I will make sure I pick that book up.
And Ratface - my doctor is amazing. He's like a 6"4 tall, giant shaven headed angel - blessed not only with genius (awarded professor both for achievement in H&N surgery and learning) but amazing people skills and presence. Not once did he end a meeting with us, he let me and 4 of my family into the meeting the day I was diagnosed and let us ask every question we all had until we had finished. Everything - we basically said ok that's all we've got at the end. It was after 6pm and he still had many people to see - he was giving that time to everyone.
As for his skills. He took out 35 nodes - literally everything on one side of my neck and I didn't lose a single ounce of function, practically nothing at all aside from the most vague of stiff shoulders. I lifted an 8kg free weight with my left shoulder a week after the op, it's completely normal. Having read other stories about dissections I told him I realised just how good a job he had done for me yesterday - his reply was a very modest 'probably more luck than judgement'. Right yeah I'm sure. He is also driving national policy in the UK including pushing the government to introduce more of the accurate beam radiotherapy machines across the uk, and is the founder of the largest centre for the use of transoral laser treatment of head and neck patients to save function. He did my tonsil and tongue with the laser beam and the tonsil had healed after 7 days.
The guy exudes positivity and presence, he is an amazing man and I have been truly blessed by him treating me. With him looking after me and finding this place for moral support and practical advice I feel like I have been incredibly lucky. I just wish everyone else here the very best and want to give some back. I hope I can help people with pending dissections, tonsillectomy or BOT biopsies or anyone arriving with MEC trying to understand it. One of the benefits I can pass on here is what knowledge I have gained from him.
Most of all I want some of my fortune so far to rub off on my fellow newbies. Phrannie I've got my Pom poms and I'm on the bus. Give me a P - give me an H! :-)
All the best
Leo
Great news!0 -
WowKareGiver said:Yes
Great news!
Great to hear!0 -
Great Newskimmygarland said:Wow
Great to hear!
Good to hear Leo. God Bless you, now get on with your life enjoy your family, and the Bus although prefers you never need a ride again, it will be here if you do.0 -
Well, well, well,ditto1 said:Great News
Good to hear Leo. God Bless you, now get on with your life enjoy your family, and the Bus although prefers you never need a ride again, it will be here if you do.
All that worry for nothing. Leo, your diagnosis could not have turned out any better and I'm so happy for you for not having to go the Chemo-Rad route. You really dodged a bullet on this one.
Since I've been here I've felt a little bad for everyone here. Meaning, my case was not an aggressive cancer and the tumor was clearly defined. Luckily I too didn't need to have Chemo but did have to suffer through the RT only because I had two positive nodes in my neck so they had to make sure. And even that wasn't too bad because it was a lower dose. Others suffered so much more than I although it surely wasn't pleasant and even today my throat is still sore.
To be honest, your case had me baffled. There didn't seem to be a clear diagnosis and no primary tumor to be found. Who cares? What matters is you are just about done and can get on with your life a lot sooner than most.
And I'm not surprised you didn't suffer any problems from the neck dissection. The reason I am having trouble is because one of the positive nodes was right under a major nerve so he had to keep moving it from side to side and stretching it too. But it will heal I'm sure.
Your post made my day and it looks like many others here too. Don't just up and leave us now buddy. MEC is very rare and we need people like us to tell our experiences to those who newly join and need answers.
You are home now, right?
Tommy0 -
great newstommyodavey said:Well, well, well,
All that worry for nothing. Leo, your diagnosis could not have turned out any better and I'm so happy for you for not having to go the Chemo-Rad route. You really dodged a bullet on this one.
Since I've been here I've felt a little bad for everyone here. Meaning, my case was not an aggressive cancer and the tumor was clearly defined. Luckily I too didn't need to have Chemo but did have to suffer through the RT only because I had two positive nodes in my neck so they had to make sure. And even that wasn't too bad because it was a lower dose. Others suffered so much more than I although it surely wasn't pleasant and even today my throat is still sore.
To be honest, your case had me baffled. There didn't seem to be a clear diagnosis and no primary tumor to be found. Who cares? What matters is you are just about done and can get on with your life a lot sooner than most.
And I'm not surprised you didn't suffer any problems from the neck dissection. The reason I am having trouble is because one of the positive nodes was right under a major nerve so he had to keep moving it from side to side and stretching it too. But it will heal I'm sure.
Your post made my day and it looks like many others here too. Don't just up and leave us now buddy. MEC is very rare and we need people like us to tell our experiences to those who newly join and need answers.
You are home now, right?
Tommy
That is just the best news ever.... so sorry you had to endure all that up front worry time... that seems to just be part of the whole ordeal. My best to you and stopping back in once in a while is definitely allowed !0 -
DoggyIngrid K said:great news
That is just the best news ever.... so sorry you had to endure all that up front worry time... that seems to just be part of the whole ordeal. My best to you and stopping back in once in a while is definitely allowed !
Thanks Ingrid - I love your dog by the way, great pic.
We have two Lhasa Apsos - we did have a big bearded collie, but whilst previously an incredbly good natured dog she reacted very badly to my wife being pregnant with our first and we couldn't keep her.
We found her a fantastic home through the breeders club on a farm out in the country and still visit her 4 years on. The Lhasas are wonderful with the kids - very even tempered and calm little dogs who complete our family.
All the best
Leo0 -
that's my boyLeoS2323 said:Doggy
Thanks Ingrid - I love your dog by the way, great pic.
We have two Lhasa Apsos - we did have a big bearded collie, but whilst previously an incredbly good natured dog she reacted very badly to my wife being pregnant with our first and we couldn't keep her.
We found her a fantastic home through the breeders club on a farm out in the country and still visit her 4 years on. The Lhasas are wonderful with the kids - very even tempered and calm little dogs who complete our family.
All the best
Leo
Leo, thanks, that's our golden, Barney. We've always had only four-legged "kids" and they mean the world to us. We are down to one now and he has been my bud thru thick and thin. He was a great source of calm to me when I was at my worst; and he forced my hubby to get out of the house and away from the worrying for a while. He is 5 and still a pup. Don't think goldens ever grow up really. He keeps us young. Will look forward to your continued contributions on here. Thank You.0 -
Tommytommyodavey said:Well, well, well,
All that worry for nothing. Leo, your diagnosis could not have turned out any better and I'm so happy for you for not having to go the Chemo-Rad route. You really dodged a bullet on this one.
Since I've been here I've felt a little bad for everyone here. Meaning, my case was not an aggressive cancer and the tumor was clearly defined. Luckily I too didn't need to have Chemo but did have to suffer through the RT only because I had two positive nodes in my neck so they had to make sure. And even that wasn't too bad because it was a lower dose. Others suffered so much more than I although it surely wasn't pleasant and even today my throat is still sore.
To be honest, your case had me baffled. There didn't seem to be a clear diagnosis and no primary tumor to be found. Who cares? What matters is you are just about done and can get on with your life a lot sooner than most.
And I'm not surprised you didn't suffer any problems from the neck dissection. The reason I am having trouble is because one of the positive nodes was right under a major nerve so he had to keep moving it from side to side and stretching it too. But it will heal I'm sure.
Your post made my day and it looks like many others here too. Don't just up and leave us now buddy. MEC is very rare and we need people like us to tell our experiences to those who newly join and need answers.
You are home now, right?
Tommy
I am indeed home - got back on Monday evening. As for this place - I'm going nowhere! As I said before I am part of something now and my story is intertwined with those of everyone else on here. Just because I got an early ticket off the bus (for now at least) doesn't mean I'm not going to be here supporting my fellow newbies.
I have already formed a bond with many people on here, it will be part of my life now - 'for better or for worse' in relation to my own situation.
Also as you quite rightly say MEC is a rare cancer and I have learned a lot about it since diagnosis so hopefully can help those joining with the same type understand how it works. Mine has been a strange case to say the least - but fortunately for me strange in a good way.
I have had scan after scan, test after test come back completely clear. Even the lump which was eventually diagnosed as cancerous didn't react to the PET scan despite being a reasonable size. Mine seems to be the quietest, shyest cancer in history - I just hope it stays that way!
I feel blessed to have found this site and the people on it.
I have this really positive feeling that maybe that might be it for me for now - its interesting because when I had the lump and I was being told by everyone it was benign I had a strong feeling it wasn't, so kind of felt the opposite. I was very sorry to be wrong that time, but I hope my this time more positve instinct proves to be right again. I'm certainly not taking anything from granted however, and will still be worrying when the scans come about, but also taking measures to try to help my body if there is still something there.
From the first day I arrived here Tommy you were a real source of calm and of information to me. I cant begin to tell you how inportant that was post diagnosis when everything was up in the air. I hope to be able to do what you did for me, for others arriving here new. As my case is a bit odd, I perhaps can't relate exactly what I've been through - but I think I have plenty of information I can offer.
Thanks again for all you have done, and you can be sure I will be here every day at some point. Not least to celebrate when you get your first NED , because there's no question in my mind you will when that first post rads scan is done.
All the best
Leo0
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