This is my 1st post.
A month ago my husband noticed a golf ball size lump in his neck.
He had a week of antibiotics….
Then saw an ENT consultant….
Then had ultrasound guided fine needle biopsy.
We are awaiting the biopsy results (it’s been 9 days).
The lump is now tennis ball size & is affecting his swallowing & pulling the back of his neck muscle. He has a constant high temperature & soaks the bed every night with really bad hot flushes.
Do we just keep on waiting until the hospital contact us, or do we go back to the GP in light of the temperature & how big the lump has grown?
Any advice very greatfully received.
Dear Angela @Houghton,
That sounds very worrying for you both.
Unfortunately these days I think we really have to advocate for ourselves. It’s no good standing back and being polite and just thinking everything will happen in a timely manner because the poor NHS is under so much strain.
From what you are saying, the rapid changes including the sudden increase in size of the lump in your husband’s neck and the effect it is having on his swallowing would absolutely justify chasing up your biopsy results and also getting new advice on what to do about the swallowing problem. Plus making your GP aware of the high temperature and night sweats that your husband is experiencing.
It’s hard when you can feel there’s enough that’s difficult going on and that you shouldn’t have to do this but it seems to be the only way.
I really hope you will get a response very soon with helpful advice and treatment.
Hi @Houghton and welcome to the forum.
It must be a really worrying time.
I would definitely suggest reporting any changes to your GP, especially as it sounds as though this has become quite uncomfortable, is affecting his swallowing and symptoms are more consistent. You can never be to careful.
Waiting is just the hardest part isn’t it!
Please keep us updated on how things are x
Hi @Houghton a great big welcome to our forum and it must be a very worrying time for you both.
I have found that biopsy results take varying times however I definitely think that he needs to see his GP about the change in his symptoms and their severity.
I find it also helps to write down all the questions I want to ask before an appointment.
Please do let us know how he gets on.
Look after yourselves and be very kind to yourselves.
I hope you are both doing okay this morning? I am so sorry to read that your husband is undergoing investigations. I hope you are both coping okay?
Can i ask have you been given any indication of a follow up appointment or indeed been able to chase things up with his haematology team?
I also wanted to let you know that should you need to talk anything through our support service team are very much here for you both in any way we can be- 0808 2080 888.
Take Care, Lauran
Thank you for your welcoming response.
Can I ask… is this normal?
Since the biopsy 11 days ago…We have had no notification of an appointment of any kind, but this morning Dave received a handwritten note with a blood bag asking him to get bloods done (doesn’t say where). He’s going to go to the gp on Monday to see if he can get one squeezed in next week.
The paper section of the blood bag has requested kidney profile, and that it’s for ‘pre-scan’.
This is the first we know anything
about him having a scan. It’s been 11 days since the biopsy & I am literally losing my mind.
I’m sorry how stressful this feels for you both. There is unfortunately not a ’ normal as such’ but yes biopsies can take a number of weeks to have results returned.
It sounds like wheels are working well in the background with plans being put in place for further tests however i appreciate the lack of communication must be really difficult for you both. It is likely you will receive an appointment through once the biopsy results are back.
We understand that the wait and feeling in limbo can be really challenging and it’s no wonder you feel like you are losing your mind. Do be kind to yourself over the next few days and try to keep yourself busy where possible.
Would it help to perhaps talk things through with us at any point?
If so please just let me know and we can arrange a call for you. It may help just to better understand the process and timeline of events, but please feel no pressure to do so at this stage. We are happy to be here for you in any way that feels right for you.
You are right in asking the GP practice to take these bloods, it looks like all information is noted on the form for what is needed. It’s then likely you may receive an appointment for a CT scan or similar, which is often done in order to help confirm or eliminate a diagnosis.
Look after each other, Lauran
Thank you so very much for your message.
I will book a call as soon as we know what Dave’s dealing with.
A quick update……
Daves booked in for an MRI this week, he’s waiting on a call for the CAT Scan & is back to see the ENT consultant next week.
We’re praying it’s not Lymphoma, but with the tiredness, night sweats, paleness & occasional breathlessness I really am genuinely frightened that my usually exceptionally healthy husband might be quite poorly.
By Monday we should know x
Hi @Houghton. It sounds as though things have really got moving quickly and I can imagine it’s
really tough at the moment.
The waiting so hard. Just take each day as it comes and remember we are here for you and Dave.
Try and keep busy (easier said than done I know) and if you need to talk anything through remember the support line is always there.
It’s so hard for Dave but for you as well so I’m sending lots of love. Please keep posting so we know how you are doing X
Hi @Houghton thanks for the update.
I often say it but all tests are to rule conditions out as much as in.
It must be frightening for you (well both of you) seeing your husband so poorly.
It must be horrible for both of you not knowing and waiting, but perhaps have a talk and see what you both want to do to distract each other till then.
Please do let us know how Monday’s appointment goes.
Be kind to yourselves
Hi, I feel your panic. Same thing happened to me, it felt as though I had a potato stuck in my throat, I could hardly swallow anything and my speech became totally different too. When I saw my Doctor he sent me A&E immediately. I was given a major dose of steroids which relieved the throat problems within hours. My biopsy took three weeks to be analysed, for some reason it had to be sent to Germany. I saw my Consultant yesterday who ordered a blood test, this was done by phlebotomy at the hospital immediately. Don’t be afraid to kick-up a fuss, your hubby shouldn’t be having to wait for a biopsy before action on his throat. I shall probably be dragged over the coals for this as obviously not every condition is the same. Good luck both x
Well…. Today’s the day we see the ENT consultant for diagnosis.
I say ‘we’ - I know this is all happening to Dave, but it’s affected the whole family.
As Dave keeps saying…. Hopefully it will just be a big boil (that’s just his way of keeping optimistic).
Does anyone have any tips or advice on things to ask that I might not have thought of already. I have looked at the list on this website & taken some things from there.
Many thanks in advance
It sounds as if you and Dave are as prepared as you can be @Houghton
I would say every question in your minds are valid
Thinking about you both.
Please do let us know how you get on
I hope you are both doing okay? I would imagine irrespective of Dave’s diagnosis, today will have likely been a difficult day, but I do hope you were able to have some answers and a way forward to Dave feeling much better.
Remember our helpline is very much here for you both should you have any questions r wish to talk things through at any time- 0808 2080 888.
Take Care, Lauran
Will be thinking of you today. Please - when you’re ready - let us know how you get on.
Ask every question you have and take good care of yourself X
Thank you for all your support.
The lump in Dave’s neck is actually secondary cancer (Squamous Cell). The problem is - they can’t find the primary source of cancer.
He will have a PET scan in a few weeks to try & find this, and we have been told that Surgery chemotherapy & radiotherapy will commence immediately after they know where to treat.
We are in shock.
Thank you so much for letting us know how you got on.
Off course you are all in shock and still not having the full picture must make it very difficult. I expect your emotions are all over the place as it is so much for you all to process.
Take good care of yourself and each other and please remember the support line is there to support you al X