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Clear Scans

LeoS2323
Posts: 143
Joined: Mar 2012

Hi All - good news today, so wanted to share as I remember in my darker days seeing good news posts always cheered me up.

I was most active on here in April 2012, I had what was believed a cyst surgically removed, which despite lots of clear tests (including PET) came back from the labs as being MEC (salivary gland cancer). I had left sided neck dissection, BOT biopsy and left sided tonsilectomy - they sent all my junk off to the labs which came back completely clear, so I have been having 4 monthly scans of the head and neck and specifically parotid glands since.

I have had two clear MRI scans so far, so to mix it up a bit with the scan types I had ultrasound of the parotid and neck today which was done by a consultant who advised me on the spot that everything was completely clear. So fantastic news, my wife and I had a big hug straight after and we don't have to worry about cancer too much again until later in the summer. I think in the grand scheme of things low / intermediate grade MEC is one of the 'better' ones to have.

There is a little bit of uncertainty involved here about possible primary, but my doctors seem to think that the most likely outcome is that this was a bit of salivary tissue which happened to be in my neck, or perhaps my immune system saw off the primary but not before a few cells escaped. The other factor is if something is there, it is so small and slow growing that hopefully we should be able to deal with it through treatment if it does show itself at some point in the future.

Although getting cancer at 33 years old with two little ones (one and three at the time) and having to have a neck dissection wasn't exactly a dream, I feel extremely lucky to have got away with what I've gone through so far. I was fortunate enough also purely by chance of my geographical location in the NHS to have a professor of surgery do the work who is one of the best in the UK, and I was actually back playing soccer again for my team around 5 weeks after my 6 hour operation. Getting back to my sports and training was a real boost in getting back to health both physically and mentally, it feels like doing something to fight.

This site was so supportive of me - particularly people like Skiffin, Tommyodavey, Phrannie and Ditto during my darkest hours. Having not been through radio and chemotherapy I can't give any advice on that side. But I think the people on here are an absolute inspiration - its incredible some of the things I read about people going through on here and who don't give up fighting. I wish everyone on here who is going through so much all the strength and courage in the world, I admire you greatly.

Hopefully I won't ever have to go through radiotherapy or chemotherapy, but if I do I know that this will be a fantastic place for support. In the meantime I am definitely going to keep calling in and saying hello. I'm ready to fight with every last ounce of strength that I have if I have to, seeing my two little ones grow up and being able to provide for them as their Dad and be there when they need me is all the motivation I need, and all that really matters to me now.

If there's one thing this damned disease gives you - its perspective! Lots of love particularly to all my fellow bus riders who had to stay on the bus when I got to jump off early, and to everyone on here fighting the good fight with such incredible courage.

All the best

Leo

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

You got that right brother....

Glad everything is going good, and great to hear from you.

All my best for many long years to share with your family and hearing from you on occasion...

Best ~ John

ditto1
Posts: 634
Joined: Mar 2012

GLAD TO KNOW YOU ARE DOING OK, MISSED HEARING FROM YOU.  KEEP UP THE GOOD WORK OF STAYING WELL.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Congratulations and thank you for sharing your news with us all. It's great to see/hear some postive vibes on this forum. I, too, have found this forum to be incredibly helpful and feel so lucky that so many have stuck around to help us and others as we travel this journey. We are 10 wks post this week and things are improving each week. Our scan is at the end of the month and looking forward to some good news ourselves. I want to be able to give back to any new folks that get that beast of a dx and need some help along the way.

I hope you continue to keep us informed of your journey and best wishes to you. Now go enjoy your family!

~Cureitall

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

I always wonder about those who were on the bus with us....where'd they go?  What are they doing now?  So hearing wonderful news is inspiring and gives me the old "whoop" feeling!!  Knowing that you're doing so well makes my day...THANK YOU!!

p

LeoS2323
Posts: 143
Joined: Mar 2012

Thanks for the replies all. Great to see some familiar faces!

John - you are an absolute gentleman and deserve a medal for all the good advice and support you offer on here. You must have helped countless people like me in their darkest hours, that you take so much of your own time to do that is very special.

Cureitall66 - fingers crossed you have the same good feelings we had after our scan today, here's to a great big NED!

Ditto - great to hear from you, your transformation on this site was a thing to behold. From lost and ready to give up to a warrior!

Phrannie - love the new 'do', you look great! Lovely to see you with that big smile and doing so well.

Love to you all, and I will keep in touch. I have offered a little bit of advice and hopefully comfort to people having neck dissections here and there as my experiences have been pretty good overall, or people who come on with MEC (pretty rare we see them but now and again) and will keep my eye out for when the opportunities to assist with my much more limited experience arise!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Good to hear it!  Glad you came back by - you know how great it is for us all to hear that one of ours is doing well.

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