New - Kind of (neck dissection)

Hi Maya,  I had a neck dissection  eighteen months ago now.  Apart from a bit of Lymphoedema and some numbness of my ear and a tingling sensation of my neck (it feels rather like a stinging nettle rash) everything is fine.  You can bearly notice my scar as I have shoulder length hair, so it's mostly hidden.  I have found that the chemo/radiation was worse than the neck dissection in terms of after effects.  I  found recovery fairly rapid after the staples were removed.  I hope that helps.

Hugs, Hazel x

Thank you Hazel. I really appreciate your reply. I am only 10 weeks post surgery but I still have a lot of pain, swelling and some hard lumps. I'm not too worried about the scar, because I'm grateful...you know what I mean! They told me the ear would be dead forever but it is coming back. I originally had very bad scalp pain and on the back of my shoulder but that is receding too. I say this just because they never warned me about that and others might be getting that and want to know that it goes.

Thank you again for replying to me.

M x

I had 2 neck dissections one in late 2019 and the other just as we locked down in 2020.  The second was more extensive taking most of the lymph nodes from the RHS although they did not have to touch the jugular.

Initial recovery was quick and relatively painless.  About 20 days after the first one I flew to the USA for a holiday in Orlando - theme parks etc!!  Recovery was much the same for the second one although I combined that with a second tonsillectomy.  I don't do it the easy way.

In my case the most obvious side effect was in moving the accessory nerve which controls shoulder/arm movement.  We are all different but I was able to lift significant weights close to my body, but I could not reach out for a glass at arms length.  That took around 18 months and physio exercises to get back to near normal.

Time is the great healer and although I still do have some side effects like occasional neck cramps almost everything else is more amusing that annoying (I can scratch my neck and it feels like I am scratching the top of my ear!).  Hopefully you will be in the same position of minimal issues once recovered.

Hi Peter. Thank you so much for replying! I have read your profile and your posts and they have really helped me. Thank you for your story. There are probably a lot of people like me who read you, and you help them, but you never know it. Like you, I spent months trying to find a diagnosis. It took them a very long time to get a biopsy on my neck lump (the first was inconclusive), and meanwhile the PET scan showed hot on tonsils so they took them out. Fortunately this was a false alarm - I am saying this because if others are in this position they might want to know that this does happen.  Obviously, I did still have cancer, but the process of diagnosis is very distressing.

You are obviously a traveller - any advice on insurance?

Thanks again,

Maya

There are a lot of things they don't tell you Maya, but I suppose there is so much that if they tried to tell us everything we'd be there a week   I couldn't work out why my hearing aid wouldn't cone out the other night, until I realised it was my ear I was pulling on.    That's another thing I had to find out, my hearing aid is courtesy of the radiotherapy apparently.  Never mind, I'm just grateful to still be here and in a way I am glad I didn't know everything at the begining.  Take care.

Hugs Hazel x

Hi Maya. Over time I have had 2 neck dissections one in 2013 as part of a mandibulectomy for jaw cancer and one in 2018 as a stand alone op as a preventive measure as there was a high chance of getting more jaw cancer in my upper jaw this time. (This did happen and was successfully treated later)

With both ops I had similar results. Same as the others I have altered sensation from my lower ear to my collar bone where the cut is. I still have this but it did improve somewhat over time although initially was rather annoying. There is also a feeling of tightness and I have had occasional cramping but this hardly ever happens now. All things that I have got used to. I also had issues for a short time with being able to raise my arm above my head as a result of the accessory nerve being bruised during the op. For me this came good by itself over a few months and I did not need physio for it. 

I was only in the hospital for a couple of days for the stand alone op and was discharged when the drain was removed. It was quite easy compared to the other ops I have had. 

Best wishes for the op and I hope you have a quick recovery.

Lyn

Many thanks Hazel. I guess you are right...there is so much information and everyone is different.

I still have a hard swollen painful area below my ear. Please does anyone know if I am supposed to be massaging this, or whether it is too late or pointless?!

Thanks in advance...

Maya

Many thanks for replying Lyn and for the good wishes. It's good to know that things improved for you over time. I hope you are doing okay now.

All best,

Maya

Hi Maya. 

Fellow Papillary Thyroid cancer patient here although I am a bit of a rare case. 

Anyway in 2022 I've had total thyroidectomy with central and left neck dissection. Cancer found in few lymph nodes, not massive amount however we know now that is rather aggressive (again rare so don't worry about it). Original tumour was 11 mm. 

What I remember is that I was feeling poorly after the surgery (it was 9 hours long).

For 2 weeks after I was literally on a sofa resting,my mum took care of my family for me. 

I have some permanent side effects from that surgery. Left arm - I cannot rise it higher than the shoulder height. Then the area from my left ear going down to my neck - nerve damage, I cannot feel it like before, skin is very sensitive to the touch. Nothing changed in 4 years, I don't expect to go back to normal. 

I've had RAI in June 2022. 

It didn't work in my case but we only found out when I had first recurrence, 8 months later. One small lymph node removed, that surgery was 40 mins and I could drive by myself next morning. 

Then another recurrence, in 2024,again one lymph node removed, this surgery was much longer, as part of that lymph node was attached to my artery. Recovery was much worse than second surgery. But I did it again. 

Had check ups every 6 months, now I know my oncologist was suspicious of something all the way as in March 2026 another lymph node 2as found, this time inoperable. Top of it was very high in my neck. I was devastated. 

Where's the easy cancer, I thought. 

In April 2026 I have started external beam radiotherapy, and OMG, none of the surgeries made me so poorly! 

On 12th of June after radiotherapy no 33 I went straight to cancer ward with malnutrition and pain not under control at all. I have lost more than a stone in 2 weeks then. I couldn't even bear the ensure drinks. Was very poorly. 

Left the hospital 2.5 weeks later with nasogastric tube for feeding. My throat took a battering like I never saw before. 

I am now 6.5 weeks after radiotherapy finished. NG tube was removed 2 weeks after I left the hospital as I had all ensure drinks and meds by mouth. There was no point in having the tube anymore so I asked for early removal. 

I am on a mend now. Planning to go back to work in 2 weeks.

We will see how radiotherapy worked in few months, when I will have PET scan. 

Reason why I am on this forum is that thyroid cancer one is not relevant to me anymore. I needed advice on radiotherapy and side effects and there's hardly anyone with thyroid cancer that had it. 

All the best. 

Izzy. 

Thank you

We use the Nationwide Flex account.  They will not cover me for the cancer and other issues such as the now underactive thyroid, but I am happy to take the risk of booking late to minimise the risk of losing a holiday due to another scare and I feel that if the cancer does make a new appearance during the holiday I will not be in a desperate situation of having to cut the holiday short.  It is always a balance of risk.