Hello all, new here! F37 in Scotland

Wow, I feel like such a imposter in comparison, or maybe this is just the start of my journey... 

I did google it as soon as I was out of the clinic and it looked like the butcher's. 

I know I can still get unlucky but this is valuable information and thank you for sharing. 

I like your statement that you are happy with your choices, it shows so much maturity and strength. 

Thank you for sharing. 

I think it is a good point, always being worried. I have been driving myself up the walls the past months but with a kid in the house kept it under the lid. 

I wish you a smooth recovery, thank you for sharing!

Hi Lyn, thank you for sharing. 

I think I was told 5 days in the hospital, probably to manage expectations. Then came the long list of side effects and in a format of "can and does happen" which sounded very daunting. 

I am working a desk job, I do wonder how this will be impacted with reduced arm movements. Financial issues are also of concern. 

The neck dissection is also highly recommended in my case. May I ask what type of dissection was it? 

This is very reassuring yes. I am starting to lean on this direction for sure, just need to get over myself. I am still post op on my tongue and due to be back to work in 2 days so really anxious

Hi and welcome to the forum.

I’m 39, also in Scotland, and earlier this year I found a lump on my neck. Long story short, it was cancer and had spread from my right tonsil to a lymph node on the right side of my neck. 

I had two operations. The first was a tonsillectomy and mucosectomy of the tongue base. The reason for both was because it was cancer of the unknown primary at first and this op identified it as in the right tonsil. I stayed in the QEUH for 1 night following this and was released.

The second was the neck dissection and oropharyngectomy to give pathology the 5mm margin they wanted. I stayed in the QEUH for 3 nights after this. 

In my view, the neck dissection was the easier of the two operations in terms of pain management. I was only in hospital longer with the neck dissection due to the requirement for the chest drain. I’m now 2.5 months on from the dissection and it’s a very faint scar, barely noticeable. I still have shoulder pain from them cutting the nerves to get at the lymph nodes and I’ve been told to expect this discomfort for approximately 1.5yrs.

Just my experience but if I’m honest, the neck dissection went nearly as bad as I had thought it would be and I’m not left with any horrendous scarring. I was T1N1M0 and I’m now into week 5 of RT (RT required as the lymph node tumour was 45mm. Anything above 30mm means RT). 

best of luck  

Hi RowanBerry

Glad to hear that our real stories are much less alarming than the ones shown on Google. Please don't spend time on it as it will just reinforce your anxiety. My first neck dissection was part of a mandibulectomy that I had in 2013 but my second one in 2018 was a stand alone op in relation to a watch and wait I was on for a potential maxillectomy for left upper jaw cancer as they were not sure how things would develop but were fairly sure that it was cancer. I did end up having the maxillectomy in the end when there was definite confirmation of the cancer. I never regretted having the neck dissection as I wanted to reduce the possible risk of any cancer spreading. I do not know what type of neck dissection it was, sorry.  However with the stand alone op I was able to go back to work within a week and it did not impact greatly on my work. I could raise my arm to just under shoulder level at that stage so I could work around it. I was able to drive and type on the computer with no real issues. The biggest issue at that stage was the sensitivity on my neck and I had to pad up the seat belt on my car to protect my neck. Over time the sensitivity has receded although not completely and I still have the padding on my seat belt. The scars on my neck are hardly noticeable now.

Lyn

Hi. All I can add is now yiuve found us stick in here and put dr Google away. You’ll scare yourself even more. Trust in your team they are the experts they do this daily. 

the waiting’s the worst part you’ll get there. 

hugs 

Hazel 

Hi Chris_2024,

My procedure would also be at the QEUH. Sorry for ignorant questions, do nerves grow back and that is why it gets better or is it just getting used to it? 

I hope you will keep getting better. 

Nobody has ever said anything about swelling in nymph nodes and I think this is a precaution. I also got an ultrasound on my neck in October and there was nothing but my impression is that there could be something by now and ultrasound cannot see single cell deposits. 

I am however making conclusions from pieces of information I get, usually while I am and paralysed by the news. I feel so useless but I will get out of this pit. 

I can't say how much all these replies make me feel I am not alone. Thank you. 

Yes, you are very right. All this worrying drives me to bed. 

I have asked Macmillan nurse a lot of follow up questions now and they have arranged a follow up meeting next week so they can tell me more details. 

This is very reassuring. I don't drive but do a lot of usual household things plus desk work.

It does sound like it's best to trust the team and they don't make recommendations they don't believe in. 

I think I am too used to running around as as the start of the discovery if the lesion I jad to push a lot for everything because the wait was long and the biopsy results were inconclusive after 6 weeks of waiting so this has given me the feeling I must advocate for myself constantly and look for options. Now I am just rambling! 

That’s a good plan take a notebook or ask if you can record the meeting. Don’t leave until you’re happy with info. A good Macmillan nurse is priceless in 6.5 years out and my Macmillan nurse contacted me yesterday asking about my blog. So fingers x you get a good one. 

Hazel