Selective neck dissection - share experiences on recovery

Many thanks Nat and Dani for your responses.

Nat, I'll always push for help for my fella and aren't afraid to ask questions on his behalf, so thank you for that.  I'm so glad therapy helped you my lovely - I hate to think of others feeling lonely or isolated when they're already in an awful place.

Take good care of yourself xxx

Dani, I'll deffo look on that site, so thank to you, too xxx

People on here are Uber kind and I often weep quietly at the abundance of bravery.

Much love  

Gill H said:

People on here are Uber kind and I often weep quietly at the abundance of bravery.

Don't be so daft........Hugs

Had a meeting today with the NHS clinical oncologist (my first ever in over one year as I have only ever been dealt with by the surgeon). It was a world of difference to the meeting with the surgeon last week, where he completely threw me with his prediction on my chances of mortality. She said “we sometimes forget the impact of what we say”. 

Anyway, she agreed there could be an issue with my neck. I have this worsening and constant feeling of almost suffocation and intense discomfort in my neck, above the scar, which is rock hard. Talking is difficult…it’s like a strangulated sound and I find it exhausting. Apparently it is quite possibly fluid collection - stuff which would normally be mopped up by the lymph nodes, but as I don’t have any there now the fluid is instead impacting on all the tissues and bearing down on my voice box and other organs. They are requesting an ultrasound scan as soon as possible and, if necessary, a procedure to take out the fluid or allow it to resolve by itself in time.

There was little point at this stage to talk about next steps as this needs to be resolved first. I wouldn’t even be able to lie down flat as the crushing feeling on my neck is worse when I do and makes me panic. For now, she has insisted I take morphine and rest as much as possible. They are going to have a meeting on Friday to determine treatment after this examination, but the detail of that will be explained at another meeting, after the results from the scan. They have to decide if the radiation would be one side or both sides of neck - the side effects would be worse if done on both sides and it wasn’t something I even thought likely. They are perfectly clear on my feelings about having it at all, but want to provide me with their determined assessment and honest explanation of expectations. 

She said the main thing is that the primary goal of a cure is always the surgery first and foremost. Anything else is a just in case.

I have received my appointment for a second opinion at The Royal Marsden Hospital and have found out that they can offer more treatments than perhaps can be provided by your local NHS Trust. So it was a good call to ask for a referral from my GP. 

Further to my surgery, I was fortunate to get a GP referral to see an oncologist at The Royal Marsden (which has a worldwide reputation for its cancer treatment).

As confirmed by them, the side effects from the selective neck dissection a month ago have (in my case) been quite severe. I have extreme pain, tightness and stiffness around the whole of the right side of my neck and ear, lymphoedema above the scar, mandible palsy and muscle tension dysphonia. I’m on Amitriptyline for severe nerve pain from my previous oral surgery a year ago. 

I am being pressured to make a decision regarding RT next week to start before mid May. Despite the rationale, the truth is I can’t even lie flat as I have an overwhelming feeling of strangulation, so doing RT fills me with extreme dread. It doesn’t help that I dislocated my right shoulder just before surgery and have full tears in the tendons around the shoulder and a glenoid fracture, which is also agony when I lay flat! I wish I had time to get the appropriate treatment for all my symptoms, heal and then be in a better position to face RT. 6 weeks after surgery seems to be the magic number and after that you are condemned to having a 50% chance of systemic failure.

There are no other treatment options available and so it’s a case of three monthly full body CT scans whilst they do an Immunotherapy test (PD-L1 test), which is a medical test used to determine if I am a good candidate for certain types of cancer treatments should that failure occur. That’s it.

I’m in my twilight years, have had an amazing life, and want quality of life in my time left here. Pray that I get it and that I confound the cancer team’s expectations and don’t experience disease reoccurrence. 

Raewyn said:

There are no other treatment options available and so it’s a case of three monthly full body CT scans whilst they do an Immunotherapy test (PD-L1 test),

The NHS has just released nivolumab by subcutaneous injection instead of IV drip drastically shortening treatment time. The standard IT for our cancer is Pembrolizumab but I have a contact who has been on Nivolumab for five years and is well, so maybe ask your oncologist if you might qualify

If your PD-L1 scores are ok maybe you could even start straightaway rather than waiting for a recurrence? 

Raewyn said:

I’m in my twilight years, have had an amazing life, and want quality of life in my time left here

I totally agree with that and don’t blame you. What price cure if it leaves you badly disabled? 
I hope you get an answer from your oncologist 

I asked but was advised I am only eligible for other cancer treatments if I have a diagnosis of recurrent disease through the 3 monthly scans. Once that happens I will be considered for first line clinical trials of immunotherapy.

Fingers crossed you stay clear. Hugs 

Through my oncologist, I had an ultrasound and blood test last week to determine why I’m still getting a lot of pain in my neck. Apparently I have significant swelling and fluid build up in the soft tissues where I had surgery, particularly in the sternocleidomastoid muscle. This may explain why I feel like I’m being strangled (very scary at times) and difficulty swallowing as the swollen muscle pushes against my neck larynx and thorax. Blood test ruled out infection but may be inflammation as certainly the area is not healing normally. Have decided to see a H&N ENT specialist privately next week and get his view on this and my muscle tension dysphonia as recommended by The Royal Marsden ENT.

Would love to get on top of this as it’s quite debilitating. I don’t read on here that others have had these problems so assuming it’s rare. On the upside, the ultrasound didn’t show up any cancer in the remaining neck lymph nodes. 

Raewyn said:

Would love to get on top of this as it’s quite debilitating. I don’t read on here that others have had these problems so assuming it’s rare. On the upside, the ultrasound didn’t show up any cancer in the remaining neck lymph nodes. 

At least you have an answer and it’s not cancer. 
I hope you can get a programme going to reduce the swelling and make yourself more comfortable. 

Hi Dani, do you think acupuncture will help my symptoms, particularly this feeling of strangulation? I’ve also booked to see an oncology physical therapist who specialises with these types of side effects.