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The Roy Castle Lung Cancer Foundation
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Neck dissection - results

I have had my results following my neck dissection in December. One node was malignant and there was microscopic disease in another node. I am due back next Tuesday to see if there is any further treatment that will be needed. I am thinking that I will go back to regular scanning.

The downside of the results means that the lobectomy I had two and a half years ago didn’t ‘cure’ me but at least this latest recurrence has no been removed. Hopefully I will be clear of the disease again following this surgery for a good while.

Hope everyone had a good Christmas and New Year and best wishes for a healthy 2018!

Janey x

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Wishing you all the best. In case you do need further treatment have they tested you for mutations? Just a thought as it really could affect treatment options if you need further treatment x

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Thanks very much. Originally my Lung tumour tested as having no mutations. Following chemo, radio and subsequent removal if the tumour they found EGFR mutation.

I then have had two years free of treatment. I have emailed my Onc following this neck dissection to see if the malignant node is also being tested for mutation. He is back in office on Monday.

Thanks for the heads up on mutations. I haven’t tried any targeted chemo as had no mutation at time of original chemo. Not sure if they test again or just assume I will still be EGFR after it was found two years ago! Soon find out!

Thanks Jx

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Hi Janey, suggest you ask for retesting if they don't do it automatically as recurrence (the same as with breast) can often be different from the original tumour and systemic treatments may have changed the mutation. Has it been confirmed this is a LC recurrence rather than a separate neck cancer? There are more targeted therapies around now so whereas LC testing for EGFR has been done for some years, ALK slightly less, KRAS, ROS1, and PDL1 can now be tested for. Some areas have access to Lung Matrix trial in UK which has other agents in development for other mutations/biomarkers and the cost of sequencing DNA has significantly reduced which is why targeted therapies and immunotherapy are proving so popular to develop for market. good luck.

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Thanks very much - will find out some more when I go back on Tuesday but good questions to be asking, I know my oncologist does have access to the Matrix. I think I will get another PET done at the very least just to make sure that I am back to NED after surgery and nothing else has cropped up in the meantime.

I presumed it was a LC recurrence as is in similar area where I had treatment before but will check. They hadn’t had all the testing back in when I saw them last week hence going back this coming week.

Your post is very helpful though - thank you

Xx

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Glad that they have found a mutation as should you ever need treatment in the future it could prove useful. Wishing you all the best for your next appointment and the future x

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Thank you very much xx

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Hi Janey sorry to hear your news ,no one wants any recurrence hopefully you will have a good treatment plan regarding anything new required other than its immediate removal .This cancer journey is a difficult one .

I had a bad year last year but I am feeling a lot more positive now ,not perfect but ok planning life again hopefully after my next MRI if its ok planning a sunshine holiday before the end of our winter weather.

Thinking about you and hopefully this blip is a manageable and you can get back to running and enjoying the outdoors .Diane x

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Thanks very much.

Yes, pulled my trainers back on on Wednesday and did a three mile run which was lovely. Due back on Tuesday to find out what the next plan is for me.

Pleased to hear things have got a bit better for you and fingers crossed you get good MRI results and have a nice holiday!

Xxx

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Janey, do you find the running helps clear your mind? I swim and enjoy having the physical effort to help my lungs as well as rest my mind. well done on your 3 mile run.

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Hi Janette - yes, I love the fresh air and always feel better after a run (even if I sometimes find it hard to get out there!). We have dogs so go running with them as well. Just feel it keeps me strong and as healthy as I can be.

Well done on your swimming - I grew up by the coast and love swimming but am not near any pools / sea here - only a weedy lake!!

Xx

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Hi Janey

Sorry to hear your setback and all of this. Can you explain to me regular scanning? As oposed to what. I'm really interested.

Thanks Hoggy x

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Hi Hoggy

The comment about regular scanning was as the alternative to having any further treatment (chemo / radio as a mop up). Am thinking that I won’t have any further treatment and that I will go back to my routine regular scans and then treat if, as and when anything else crops up.

Hope all is okay with you xxx

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hello Jane

just to let you know we will be thinking about you tomorrow. Hope the appointment goes well and they come up with some treatment options,

best

Lorraine and all at Roy Castle Lung Cancer Foundation

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Thanks very much xx will let you know how things go xx

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All the best Janey. Thinking of you.

Hoggy x

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Thanks very much x

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Hi all,

Back from seeing surgeon again today. Plan is to have some radiotherapy to the area where they removed the malignant node (1cm field). The node showed malignancy in the outer part of the capsule and apparently this makes it more likely to recur - so best to blast it again.

He did say he thought the malignancy had been there since my last treatment and lying dormant (rather than travelling to that area recently /circulated). I am taking this to mean that hopefully it is isolated and by removing it and blasting the area, I may enjoy another period of NED.... hopefully for a very long time!

Xx

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Hi all

Just to update, I am starting radiotherapy on 5 Feb and it is a six week course so will take me through to mid March. It is a four hour round trip for me driving but will be worth it hopefully!

I have got back running and had a lovely 5 mile run with the dogs the other day. Hopefully will keep my fitness and strength up through treatment. Will keep you all posted.

Best wishes to you all xxxx

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Hi Janey, how are you doing ? Diane

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Hi Diane

Thanks for asking - all good here. Surgery healed up well and due to start radiotherapy on monday for six weeks.

Travelling will be a bit of a pain but by the time mid March comes around it will be spring and a nice time of year so can just look forward to that!

How are things with you? Hope all okay xxx

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Hi Janey, Good luck with the radiotherapy hopefully it won't be too tiring and I know you live in a pretty part of the world so something nice to look at least .Take it easy rest and get some good calma going positive thoughts etc .Breathe in the light let out out the dark stuff .What ever makes you feel good a.Thoughts are with you on that one .

I am doing so much better at the moment I so pleased to be here frankly after last year and I at least feel things are currently stable .I am awaiting a MRI of my head scan on 16th Feb if the cerebral oedema has reduced I am packing a bag and going on a sunshine holiday with my long sufferering hubby with or without insurance .I limp a bit as the oedema or tumour has effected my mobility somewhat using a stick or a trolley ,but I have got my head around that now as long as I can get out and about I don't care.The physio department have been brilliant down here really supportive and useful ,even got a simple daily exercise routine worked out which helps.The pacemaker has also improved everything no longer feeling faint and wobbly .When the NHS works well it is a brilliant system .so all is good off down to a beach café for breakfast in a moment with hubby its nice even this time of year .There is a little sun in the sky, good luck with everything .Diane

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Great to hear that things are sounding so positive with you and love the getting out and about attitude! Hope you had a nice brekkie at your beach cafe. We have had friends down all wend and they have just left so we are slumped in front of the fire with the dogs and about to watch the rugby! Lots of food still in the house!!

I agree that the NHS is brilliant when you get to the right people. They have been fabulous with me and I am sure I wouldn’t have been doing anywhere as well without them. Good luck for your next scan and have a fab holiday - bit of sunshine and downtime with hubbie is good medicine in itself!!

Sending you lots of love and continue enjoying each day and the joys of spring to come! Xxx

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