Husband has secondary squamous cell cancer found in lymph node primary tonsil he has had 3 operations last one neck dissection where they found the lymph node capsule had erupted he’s at the end of 35 days radiotherapy and 2 chemotherapy sessions

Hi Cashmore and welcome to this little community.

I am Dani and I am 2 years out of treatment for base of tongue squamous cell carcinoma and living well.

Well done to both of you getting through this brutal treatment for an equally brutal disease. Retired GP...Phew I know how you must feel but take heart, there are a few more weeks of this rubbish with his throat and he will feel better by six weeks and would have turned a corner by Twelve.

Don't worry too much about the chemo. Cisplatin is used as a rediosensitiser to make the radiotherapy more effective and adds maybe 5% to the success of treatment so you see there won't be much effect if one is missed.

PET/CT is to check response. A lot are still done at 12 weeks, I had mine at 16. They are veering towards later monitoring these days as early scanning picks up too much RT damage and leads to unnecessary follow up on the false positives they throw up.

I am in remission rather than cure ( what the Americans call No Evidence of Disease NED) and will continue to be so for the rest of my life., this is why oncologists don't talk about cure in that respect though they do talk of Radical Radiotherapy being curative......Confusing, yes. The longer you remain in remission the better your chances of disease not coming back but we are at greater risk of another primary  cancer appearing, as we are of thyroid damage leading to hypothyroidism and stroke due to carotid artery damage. It's sensible to monitor thyroid, take statins and keep blood pressure down.

Does your husband know his HPV status? HPV driven head and neck  cancer is much more susceptible to RT 

Try not to worry. We all think after treatment ends that everything is cancer but the feeling eases.

This article by Dr Peter Harvey is really worth reading AFTER TREATMENT ENDS

I hope your husband recovers well and please do pop back as more questions arise

Hi Cashmore

Welcome.  We are here to support you and your husband with advice and our own personal thoughts on what has worked for us and may help you both.

Like your husband they found my cancer via a secondary in my lymph node.  Eventually removing the tonsils and  my RHS lymph nodes 13 months ago.  I was Primary Site Unknown.  In the end I did not go into radiotherapy or chemo.  Just surgery.

My follow-up PET was at around 6-7 months post surgery and quite clear aside from showing an infected tooth - so they do need to weigh up when they do the PET so they don't pick up other rather more trivial things that are going on and mask any cancer. 

I am, like so many people on the 5 year series of reviews.  In my case I probably get more regular reviews as the never found my primary.  In fact I've just been back in for an operation and biopsy as they think they may have found it.  Awaiting results.

The key is to keep up with those checks.  Don't let them slip as it is then that a cancer may return and if not detected early can cause more problems than it should.

My personal belief is that I will never be free of this cancer.  It's the way I cope with keeping on top of the checks, the watching and the alarm bells going off in my head.  I may have knocked it into a corner, but unless I keep a beady eye on it then it may surprise me.  That does not mean live in fear of it, just live with it.

I am sure it is particularly difficult being married to a GP as he probably has more idea than most what his journey is all about...  I am sure he will take the pain medication as he feels he needs it.  I tend to come off it quite quickly and reduce it to the occasional dose when things are a little tough.  Otherwise I just get on with it.  As a result of my neck dissections I am similar with thick and reduced saliva and a little difficulty swallowing so I do understand his determination to get through this!

My wife is similar to you and hates it when I go to the hospital on my own.  I think many of us eventually come to realise that often the harder journey through cancer is our spouses and other loved ones as they are really "just along for the ride" whilst the patient has much more control over what is going on and the choices they make.

A bit of a waffle, but I hope you realise that you are not alone nor unique in where you find yourself and your feelings.

Hi Casmere welcome to our small community. I had tonsil cancer with several affected lymph nodes. I too was planned for 3 chemo treatments but the 3 rd was cancelled. Beesuit has explained the process so won’t repeat. The next few weeks can be hard your husbands body has the full course of radiotherapy working away plus chemo. It does get better honestly. I am now 30 month post treatment and living practically s normally. My pet ct scan was at 18 weeks tge response I got which is as good as it gets was I had had a complete metabolic response to treatment. 
I have a blog with links to other sites it may help you going forward to see that life does continue. 
keep in touch 

Hazel

Hi Cashmore and welcome.

I was diagnosed with base of tongue cancer in May 2018 and had robotic surgery to remove the tumour plus a neck dissection followed a few weeks later with radiotherapy.

Some really good and informative replies to your post to which I can't really add any more at the moment other than to say now and the next couple of weeks will probably be the most difficult time for your husaband.  After that he should very slowly start to feel some signs of recovery from the treatment. 

It is important that your husband stays on top of his medication for pain relief rather than taking it when he feels he needs to.  I'm sure being a GP he knows all this but it's amazing how professionals aren't always very good at taking their own advice.

There are products available on prescription to help ease the pain when swallowing.  Difflam comes in a mouthwash and spray form which you can use to anaesthetise the mouth before eating.  For pain in swallowing there is a product called Antacid and Oxetocaine Oral Suspension which you swallow 5 minutes before eating which anaesthetises the throat.

My father in law suffered terribly with mucous and the hospital lent him a nebuliser to help.

I'm sure your husband will have been allocated a clinical nurse so if you feel you need to speak to someone about his treatment or to ask questions you could give him/her a ring.

I wish you and your husband all the best.  There are many of us on the forum who have been through similar treatment so lots of first hand experience for support and advice should you require it.

Linda x

Hi cashmore, welcome to the forum.

Your husband has had the same as me (tonsil cancer with 1 lymph node affected) although i did not have surgery

Glad he got through the treatment, but wow at just taking paracetamol!, i had every pain relief i could for a month or two after treatment.

I am sure as a GP he knows the importance of staying well hydrated- and the role sufficient calories have in healing.

I had my PET scan at 14 weeks, my consultant said the same as Dani, that they do them later now to avoid false positives.

It will check for presence of cancer in the body and the whole body will probably be scanned (a CT scan will be carried out at the same time)

The consultant also said that its remission not a cure, he put my own chances (after a complete response) at about 10% for recurrence in the first year.

Trev

Thank you good luck for your results, I feel better now I don’t feel so alone xx

Thank you for the great tips, unfortunately his neck wound has broken down so having to have dressings changed every few hours  but still pushing through

Thanks  

Thank you so much yes HPV+ having read through all the responses I feel so much better. Only two days of treatment to go thank goodness but realise it doesn’t end here but I don’t feel so alone xx

Just come back when you need a little help or a shoulder to lean on. There’s somebody here most of the  time.
Carers are the forgotten ones here. All the care is aimed at the patient and the carer has to carry their own pain as well as their partner’s. I couldn’t have managed without my husband who largely kept me going physically and certainly mentally. He is a stoic Yorkshireman and he has had enough hard times in his life before we married but he had told me that though his heart was breaking for both of us there wasn’t a moment when he despaired at losing me. He put his head down and got on with it. Not all carers can do that. Plenty get to a point when they  need as much support as those they are caring for 

Keep up the good work and stay in touch