I'm sorry the results came back inconclusive Roger. It must be very frustrating but fingers crossed the biopsy will be more successful.

Do keep us updated when you can and we'll have our fingers crossed for good news.

All the best,

Steph, Cancer Chat Moderator

Thanks Steph for your kind words. I'll keep reporting back, since others who find themselves in a similar situation in the future may find it helpful.

This morning I had my neck biopsy. The plan was to take a core sample from an enlarged lymph node which had shown up on my CT scan (the node is 10mm by 25mm). The sonographer took a look at the node by ultrasound, then said that it was too close to my jugular vein to safely take a core sample.

Instead, they took a "fine needle aspiration", which involves sticking a needle into the lymph node several times and sucking out some of its contents. Unfortunately, this lymph node was hard and rubbery, just like the ones in my lungs, and the doctor said that there was very little sample obtained, and therefore very little chance of a diagnosis. I should know the result within a week, but it's rather discouraging since the only way to get a better lymph node sample would be under general anaesthetic.

Hmm, now this is an odd development. My results, good or bad, were due to be conveyed to me at a phone appointment next Tuesday.

Today the hospital's Appointments Department phoned and asked to change that to an in-person appointment on Monday.

This makes me think that they probably managed to get a usable sample from the fine needle aspiration, despite the doubts that the specialist expressed at the time. The switch to an in-person appointment might mean it's bad news - although the switch might also be due to an easing of Covid-related restrictions on in-person appointments. Or maybe they just had a convenient cancellation and wanted someone to fill it (I tell myself).

Five days to wait...

Hi Roger, I understand you anxiety, i have a brocoscopy next Tueaday and am petrified. Hopefully It will pass ok, please keep us informed  las I will be looking out for your posts. I hope it's good news but even if bad we are here for  you to rant, cry or even celebrate . 

Hello PJLQueen, thanks for your kind words. Good luck with your broncoscopy tomorrow. At least it will be one less thing that you are waiting on, once it has been done. My broncoscopy (a few weeks ago) was a little uncomfortable but not painful during the procedure or afterwards.

My in-person appointment today turned out to be just to tell me that no clear result was obtained from my neck biopsy, which apparently is quite common.

To work out what is going on, they are now recommending a mediastinoscopy, which means pushing a flexible tube into my mediastinum (where my lymph nodes, oesophagus, and heart are located) and snipping off a piece of the biggest lymph node. It will be done under general anaesthetic, and is a more major investigation that what I've been having so far.

Nevertheless, I need to get it done to obtain a diagnosis. Now for the waiting - to get an appointment, and then for the procedure, and then for the results.

So here's an update. I've had the mediastinoscopy, but there are so many steps that it took over a month despite being marked as 2-week-wait.

First I attended a pre-admission clinic where they took another chest Xray, an electrocardiogram of my heart, a bunch of blood tests, and a groin swab to check for MRSA.

Then I had to self-isolate for two weeks, prior to the procedure. Because my wife works, we had to partition the house. I lived in the attic, which has a small carpeted area where I could sleep on a mattress that I hauled up. I brought up a microwave oven. There was a small basin where I could pee while I left the tap running to flush it down the basin.

I came downstairs each morning between 5.30am and 7am, before my wife and children were awake and when all the doors were closed. During this time I had a shower, used the toilet, and raided the fridge and pantry for food that I could take up to the loft for the day. Apart from my trips to hospital, and occasional exercise in the garden, I did not leave my attic cave. I was glad when the isolation was over.

Later I had nasal swab for a Covid test which was negative. I hate these. They put the swab up your nose into your sinuses, then twist it around and it feels awful, but I tell myself to relax, knowing that it will be over in ten seconds.

This was so that I could go for a full lung function test three days later. I think this is so that they can check that I'm fit for general anaesthetic. Anyway, they said my results were "within the normal range for my age", although I spent much of the time coughing into the mouthpiece.

A few days later I had another Covid test, again negative, so three days after that I was able to be admitted to a hospital in Blackpool for the mediastinoscopy, which I will describe in the next post.

I was admitted to hospital the day before the mediastinoscopy. They were very thorough, checking all sorts of things about my health so that they could tailor the anaesthetic and other treatments to my needs.

The operation the next day was to be carried out in the cardiac operating theatre by a cardio-thoracic surgeon. I was scheduled to be after someone's heart valve replacement, and they didn't know how long that operation would take, so I was waiting for hours in the ward knowing that at any moment I could be whisked away. I found that uncertainty made the wait quite unsettling.

The surgeon and the anaesthetist were absolutely fantastic. They made me feel at ease, and within a few minutes the anaesthetic was working and I was unconscious. The first words I heard after I became conscious again were "You're awake, the operation is complete and it was successful". Very good words to hear upon waking.

There was a dressing at the top of my chest, just below my throat, and it was uncomfortable, but only painful if I moved. The only pain relief I needed was one dose of paracetamol, after that things improved. The surgeon came down for a brief chat, and told me that he obtained several good tissue samples and it would be plenty for the lab to analyse. He said I could go home the next morning.

They kept me in overnight, and by next morning I felt fit, alert, and ready to go home. However, the discharge doctor didn't come to check me out until mid-afternoon. It's now the day after that and I'm at home, and tomorrow I can peel off the dressing and see what the incision in my chest looks like and how it's healing.

I've been told to expect results in ten to fourteen days.

As has often been the case, "results in ten to fourteen days" didn't happen, but in this case it was only 16 days. The biopsy tissue yielded a clear diagnosis: no lymphoma or other cancer detected, and it was not TB or fungal infection or a few other things that they tested for. There is no specific lab test for sarcoidosis, but the histology was consistent with sarcoidosis so they reached that diagnosis by excluding other possibilities.

The consultant thinks it's probably inactive sarcoidosis, and is not proposing any treatment. There isn't any cure for sarcoidosis. If it's severe enough they will try to alleviate the symptoms, but the consultant was clearly of the opinion that the side-effects of the drugs would not be worth it in my case.

So I'm stuck with my symptoms, including my annoying long-term cough and some shortness of breath. Things might improve on their own over one or two years, or they might get worse in which case symptomatic treatment might be worth it. It's not a really great outcome, but better than a diagnosis of lymphoma or other cancer.

They will put me on the waiting list for an eye check and a heart scan, just to check that the sarcoidosis is not more widespread. I won't be on the "2-week-wait" pathway, so the waiting list will be long and I can tell that the consultant thinks his work with me is completed.

This respiratory clinic was running almost two hours late, and I saw all the earlier patients going in before me. Without exception, the other patients either had someone to assist them or had obvious difficulty walking the 10 metres from the waiting area to the consulting room. It made me feel quite out-of-place being able to walk briskly and comfortably to the consulting room when it was my turn.

Thanks for the support, encouragement and conversation that I received on this forum. I will post again if my heart and eye investigations yield anything interesting.

Best wishes to everyone, whether you are diagnosed, awaiting investigations or awaiting results.

Roger.