Struggling waiting diagnosis

Thank you so much for your reply to my message. That has really helped. It all feels very overwhelming at the moment and I think I’m scared of what’s to come. Do you mind me asking did you continue to work or did you take time off to support your husband? I’m due back at work in September in a classroom ( so germs galore) and I’m worried that that might be when he’s at his most vulnerable to infection and in need of more support. X

I wonder has anyone come across a situation, where the MRI showed a suspicious lump, bloods are fine, needle biopsy came back negative & seemed to take mostly fluid, lump has shrunk significantly after needle biopsy to such a degree that I can still feel it when I rub it but its smaller for sure & no longer noticeable when I turn my neck sideways (I know this could be just the associated inflamation reducing but based on research it does seem to lean toward HPV+ if cancer is found as HPV negative are normally hard & don't shrink), scope found no tumour but still cancer gets diagnosed at ultrasound biopsy or CT scan stage? Doctor yesterday said that it doesn't look like a normal cyst. Sorry just trying to make sense of it all & reassure myself that the outcome could still be good. Don't understand why they didn't just do the ultrasound biopsy & CT scan first off. Sorry my head is running through all scenarios yet again. It feels so weird when overall you feel healthy except for having a lump & now you might need to face 1 year of treatment. Sorry rant over.

I know this is awful for you

The thing is that needle biopsies quite often do not get a proper representative sample. The biopsy has to be repeated using a punch which takes a bigger sample, called a core sample. That’s what you’ve been lined up for. They want a sample of the cyst wall not what’s inside it. 
I hope that they find nothing. You’ve been through the mill over this. 

Thank for the response Dani, that's makes sense, it is all very confusing. Obviously perfect scenario is that they find nothing but at the very least I'm also hoping that the fact no primary has been found yet & the lump has shrunk significantly means that if it is found its HPV positive & since no primary visible yet means its a small tumour. 

I must say that in the six plus years I’ve been here I can’t recall anybody who has reported a metastatic node filled with fluid, they tend to be solid, filled with tumour cells, so that’s hopeful. 
Your consultant is making absolutely sure because he doesn’t know and won’t guess. That would be unfair. 

Thanks Dani, thats what I'm at least holding onto as a major positive. Based on my lovely research apparently it is pretty common for HPV+ type cancer to have cystic nodes but rare in HPV negative. I mean the lump is still very much there just considerably smaller, although if I kept at it it will probably swell again. Sorry I know no one here is a doctor & can give me the answers so just talking it out really & getting it out of my head if that makes sense.

Thanks so much Gill. You are your husband are often in my thoughts. Take care and hugs to you both xx 

Hi Sandy,

I managed to work for the first 3.5 months as Andy got through all the tests and prep for treatment starting, and even managed to work the first 3 weeks of his treatment (although I'd book Mondays - his chemo days - off as holiday to accompany him).  As I said he dropped off a cliff at the end of week 3 and he cried and asked me not to leave his side for the rest of it and so I took time out of work for the rest of his treatment and for a couple more months after that. We've been together 32 years and apart from bereavements it's the only time I've seen him cry. 

The two weeks after treatment ends they will tell you things can get worse before they start gradually getting better and so it's important to be around to care & nurse during then as well if at all possible. 

If I've worked it out correctly your husband will be 2 weeks post treatment at the start of Sept when you're due to return to work. All patients are different and so you'll have to see how he is then & potentially delay your return by a couple of weeks if at all possible. Take the advice of his Oncologist and MDT re infection control - they will be able to advise accordingly, especially given you work in a school. 

You are both in my thoughts at Week 3 for you. That's nearly half way through treatment though. Well done to your husband and to you too! Keep ticking it off - we had a big chart & i'd make my husband tick it off rather than me as it was him going through it. Tell your husband there is light at the end of tunnel as bad as it seems now and as our 1st chemo nurse told both us - remember - this is temporary. I remember in those darkest most difficult days back in March, April & May for us I never thought it would end and that this was our life now - but here we are 3.5 months post treatment with a clear scan and heading off to France on holiday next week. 

Best to you both. xx

Hi Mack,

I’ve just been down the same road, mate. I had a cystic lump on the side of my neck — no other symptoms, felt totally fine. But after some scans, my MRI showed an enlarged tonsil. I ended up having a full tonsillectomy and it came back as HPV-positive.

Just this Monday, I had transoral laser microsurgery (TLM) and a neck dissection to remove lymph nodes. So I really do know exactly where you are now — it was me just a few weeks ago.

The best advice I can give you is this: take it one day at a time. Don’t get too far ahead of yourself with worry. Try to live life as normally as you can while you wait. Whatever comes next, you’ll deal with it, step by step — and you won’t be doing it alone.

You've got this, Mack.

It does get harder from week 3, my wife drove me to hospital for chemo and radiotherapy, an hour+ each way, very tiring and stressful for both of us. Unfortunately low moods go hand in hand with the treatment, distressing for partners, my advice would be to make sure you give yourself some respite time, a fit and mentally strong partner is essential to patient recovery (though not everyone has a partner to rely on).

When going through the treatment I could be an extremely annoying patient, moaned a lot, my wife was very patient.