MGUS and a Branchial cyst

On the 13th January I discovered a lump on my neck. Eventually had an ultrasound and a fine needle aspiration. The lump was 4.2cms long and consistent with an inflamed/infected branchial cyst. But I also had a blood test to rule out cancer, and it turns out I have this condition called MGUS!  I actually feel more worried about my cyst on my neck, but the MGUS is surely of vastly greater concern. Apparently, I have a 1-2% chance a year of developing waldenström macroglobulinemia, which is a type of cancer (the same cancer that Louis Walsh has). I'm hoping that maybe my abnormal blood reading is somehow related to my cyst or that it's temporary. The haematologist will be ringing me on the 21st to discuss the results.

It's now June and my cyst is now huge! Considerably bigger than the original 4.2cm, I've been taking antibiotics, and I'm now on the 5th day of taking them. Far from arresting or reducing the size of the cyst, it continues to grow and is notably bigger than yesterday.

I'm due to see an ear, nose and throat doctor in about 3-4 weeks or so, but at this rate of growth I think I need to be seen somewhat sooner.

Anyway, I have a blood test on Monday (2 days time) to see if this MGUS has progressed. Hopefully not. I don't fancy dying anytime soon. 

9/7/24  UPDATE  I finally went to see an ENT specialist today. Here's what I put elsewhere (slightly added to):

I'm back from my consultation with the ENT specialist. And it was a nightmare…

My Expectation: A one to one chat discussing the options I had to get rid of this cyst. 

The Reality: There were 3 people there in the room. The actual specialist was a Muslim lady, and I had extreme difficulty understanding what she was saying. And that was mutual.

But that made communication tortuous. Anyway, far from discussing any options, it seemed to be a given from the get-go that some sort of surgical removal is required (that I can’t remember the name of). And they want to send the removed cyst off to see if it is cancerous. Also, mention of the removal of a node was mentioned (lymph node?).

Obviously, I found this very alarming. It’s supposed to be a branchial cyst, and it is very rarely associated with cancer. So I asked about this, but she just point-blank refused to enlighten me about how likely that it’s cancer and why they think it might be cancer anyway. Also, removal of a lymph node as well is worrying. It may be that they are extra cautious given my age, hope that's the explanation, anyway.

Oh yes, and a huge long tube was poked right up my nose, which was utterly horrific! What they found, if anything, I have no idea. I couldn’t really understand much of what she was saying at all.

Apparently, this surgical removal has various possible side effects like a drooping shoulder and lip. I asked about any alternatives. She said none apart from regular ultrasound scans.

So that’s the situation, and I have no idea what to do, least of all why they might think it’s cancer in the first place. She did mention “40” and I asked are you saying it’s standard protocol to test for cancer for these type of cysts after the age of 40. I wanted a yes or no answer, but could make head nor tail of her response. So maybe “40” refers to something else (she mentioned that 40 twice).

My blood test was the same as before. Fine, apart from these very faint monoclonal bands. I asked the haematologist whether this cyst might be somehow precipitating these monoclonal bands. He hummed and hawed a bit, but then said that's very unlikely (this was over the phone). However, I read in a paper: "[i]t is unknown whether the TFS bands identified represent a pre-malignant state at all or some other immunological process entirely, such as a targeted immune response". So there will certainly be a targetted immune response from my body in regards to my cyst. I need to get rid of this cyst first and see if this MGUS also resolves.

My cyst from the 23rd May to the 10th June was increasing in size ferociously. However, I then started soaking tea towels in warm water and holding against the cyst for 20 mins or so 4 or 5 times a day. This seems to have virtually stopped its growth. I'm not sure if that suggests it's just a normal cyst? A warm wet towel wouldn't have any effect on a malignant cyst, would it? But it didn't change the ENT lady's mind (although, medical doctors appear to have an all-consuming fixation on testing regardless of the reports I provide).

Anyway, I haven't agreed to this surgical removal yet. I want to wait until I have scans. Actually, the lady said she wanted me to have an MRI scan. I already have a PET scan due in 10 days time, although she wasn't aware of this. So anyway, my intention now is to get these scans, see what the results are, and take it from there. There is no other way apart from surgery to resolve this cyst (I have no idea why).

I'm freaking out. Have I got cancer? I guess they are simply being very cautious given I am quite old rather than having found something suspicious, but I can't be sure. This is awful. And there seems to be no way of contacting these people. I want to know the name of this exact surgical procedure so I can Google it, but I can't remember what she said, and there is no way to contact them.

11/07/24 Update: I question here whether it is actually a branchial cyst.