Persistent Swollen Lymph Node

[Fishmanpa]

That's great news and frankly as expected A cyst sounds much more reasonable and likely. The scan will determine what to do about it.

FMP

[Punky789]

Gosh things move slowly in this new town I live in in terms of medicine!

I *finally* got the order for my CT and had that done last week.

The doctors office just called me and, very brusquely, said "you have an appointment next Tuesday at 10am". When I asked what for the secretary said, "to follow up from your CT." In a very annoyed tone, and then hung up the phone.

I tried to call back but apparently it was outside of their phone call accepting hours and they don't have a voicemail to leave messages.

So now I am left, once again, feeling anxious and scared. Because why would they need to call me in to discuss the results instead of just calling me and telling me? They gave me the results of the biopsy over the phone, which makes me think that there is something bad they have to tell me.

My partner is trying to say that maybe they just want to discuss it and cut it out in the same day. Or check to make sure it hasn't changed.

I so not feel so hopeful and now just feel so worried and scared all over again. And have to wait another week to even learn if it is something bad or not. I could just cry.

[Punky789]

A timeline to recap:

April 6th: noticed a spot near ear felt sore when wearing over-ear headphones

April 7th: area felt more tender. Tender to the touch and side of face looked somewhat swollen. I would say it was an area the size of a gumball if not larger. Very sore.

April 9: spot stopped hurting just in general and now only hurt to the touch.

April 25: Spot no longer really tender but definitely a lump compared to the other side. Bigger than a pencil eraser. dr just keeps saying it's TMJ. The spot, to me, felt hard and immobile.

May 12: Went to doctor again who said probably just a lymph node but that one's in that location aren't anything to worry about. She said it felt about the size of a Lima bean or marble.

May 19: spot feeling more tender again.

May 29: spot very painful and side of face in that area got swollen again. Using hot compressed and taking pain relievers to help. Side of face is swollen up to the size of a golf ball.

June 22: asked doctor for a referral to an ENT. They said they would send me to the public health nurse first.

June 25: appointment with nurse. She felt the lump. Said it felt firm but mobile. She estimated it to be about 1cm and oval shaped. Said she didn't think it was anything sinister but would order an ultrasound. Also mentioned that the sinus CT I had done in March scanned that area and didn't pick up anything but I did have a cyst in my one sinus.

July 5th: ultrasound

July 9: results in. Spoke to a new nurse who was not as nice. She said it was a "complex situation but could be a cancerous mass." Cue meltdown and panic. At that time I said it was about the size of a jumbo black cherry. Ultrasound said it was half an inch. A biopsy was ordered.

July 12: spoke to my doctor to have her translate the results after the very scary call from the nurse. Doctor said "results were indeterminate, which is why more testing was ordered. It says it could be a cyst, abcess, lymph node, or possibly tumor but that the emphasis should not have been placed on it being a tumor or mass.

July 27: biopsy done. Some white chunky stuff came out of the spot (gross) which help ease some of my fears.

August 9: biopsy results were in and doctor called me. Said the test did not show anything sisniter but it was still some what indeterminate. She said she was pretty certain it is just a cyst but we will do the CT to see if it is superficial or subcutaneous but that in the office it felt superficial. She repeated that it showed nothing nefarious.

Sept 9: Had CT with contrast.

Sept 14: CT results in and doctor called to book an appointment for the following week to discuss. Spot, to me, feels about 3/4 of an inch. It is firm and oval shaped but sometimes I feel like it has a small bit of squish to it (though you have to press pretty hard to feel that.) It is sometimes tender off and on. It is very easy to move around in any direction. It is not visibly swollen or protruding.

[Punky789]

Another update, more to get it out of my head than anything else.

I called the doctor's office to ask if the appointment could be made over the phone since I didn't have childcare. They said yes. So I felt some relief.

Well, they just called and the secretary said she spoke with the doctor who said that no, I do need to be seen in person and that they are going to scope me.

I asked why and the secretary said she didn't know.

So I am now, once again, left wondering until Tuesday why I need to have this done and freaking out. I don't know why they need to do a scope of my throat when the issue is a lump by my ear. I am just so tired of all of this. And so scared.

[Peridot10]

Hey, did you find out anything yesterday?

[Punky789]

Well I was a nervous wreck. I drove to the appointment and was seen very quickly. The doctor asked if we had had a follow up appointment to discuss the results and I said no. She said that was an oversight on her office and they were supposed to give me a phone appointment to discuss the CT scan instead of leaving me in the dark.

The , she went over the biopsy again and examined it showed nothing bad and just cystic cells. She said the CT showed the same. A 1.6cm cystic nodule. She said I also have a cyst in my right cheek sinus and a cyst on the left side of my face, though those two are small and 0.6cm and under. So I guess I just have a face full of cysts (doesn't bear thinking about really. Blech!)

She said she had meant to do a scope at the first appointment but forgot and wanted to do it now to "close the case". That was the worst part. They use a numbing spray up your nose that is vile. I almost vomited several times and my nose and throat were numb for half an hour, which was weird. The scope itself was like getting a Covid swab done...but instead of just probing the back of your nose it goes down your nose and down your throat.

She said the scope was all clear, too. She says right now she won't recommend removal because I would be waiting an age to get an appointment anyway due to the overburdened health care system currently. So, she is referring me back to my GP with instructions to check it again in a year. If it had become several cm larger by then we can remove it.

So hopefully that's the end of that. Its funny how the irrational mind works, through, because I still find myself thinking, "well what if they missed something? What if it's not actually a cyst? What if...what if..."

But logically I am trying to remind myself that 1) I am not a doctor. I don't have any of the training they do. If they say it's fine they would know. 2) Doctors don't want to risk lawsuits by telling someone something is fine when it's not! 3) I had several tests done and none of them showed anything ultra worrying. Multiple tests can't be wrong otherwise doctors wouldn't use them 4) My anxiety does not play for the same team as my brain. Its goal is not to make me feel safe or to let me "win", its goal is to bring me down and be the *winner*.

Thank you for checking in. This entire process has been very isolating for me and made me feel very scared and alone.

[Punky789]

Guess who's back...back again... Lol

I had a follow up call with my GP today about my last appointment with the ENT in September. In the discussion I mentioned that the cyst seemed to have gotten a little larger since I was last seen. She told me to call the ENT.

So I did and am now headed back for another biopsy next week. The doctor seemed a bit confused, to be honest. I understand she sees lots of patients and it's been two months so obviously she's not going to remember little old me. She didnt remember that I had already had a CT with contrast or a biopsy. So she rechecked those results.

She said my biopsy was indeterminate. Which I knew, she told me that the first time. She said the report said it was squamous or squamae or something like that and not atypical but that there wasn't enough of a sample to say for sure what it was. After my first biopsy she told me that but said she was confident that it was benign and nothing sinister. I don't know if her opinion on that has changed or not.

She said the CT showed that the cyst is in my auperfici parotid gland so removing it (which is what I said I would want to do) is not as easy as one, two, three CHOP. It would likely require a removal of part of my parotid gland. So that is why I think she wants to redo the biopsy, to see if removing the cyst (let's hope it's still just a cyst) is necessary.

I asked what happens if the biopsy is again indeterminate. She said that she would refer me to a head and neck surgeon for a second opinion.

So I feel a bit back to square one. I feel worried. And scared. She again mentioned that parotid tumors are benign 80% of the time. I said, well that still leaves 20% that aren't. She said you don't really get better odds when it comes to lumps and bumps.

So yeah. Feeling scared. Feeling angry and frustrated. I mean, she cleared me and said all was good, we can look at it in a year and then again the year after. Now it seems less good.

She said that the cyst growing a bit is common, especially if you have an infection or illness. Mine seemed to grow a bit after my darling children brought home he cold from hell in late September/early October. First cold in almost two years and it knocked me flat.

So trying to look on the bright side. But did I mention I am scared and anxious?

I said in a previous post around Sep. 14 that the spot is not visibly protruding. Well it is now. So that doesn't make me feel confident. Most people say they don't notice it, only from certain angles or if I point it out. I don't know if they're just being kind or not. But again, maybe it just grew after I got ill with that horrible, rotten cold in September. Fingers crossed, eh.

It still feels hard to me. But if I press I feel some give. Maybe that's just skin or something. I don't know. It is entirely mobile though. I can move it up, down, sideways. I would compare it to maybe a large green grape in terms of length and also width. Feels bloody massive to me, really.

[Sparky16]

I'm sorry this cyst is making trouble for you again, Punky. Cysts do commonly come back, unless they are completely removed. They refill with whatever contents they contain (yuck). Hopefully they can get a more clear result this time and you won't have to have it removed to settle the issue.

If it makes you feel better, I have a friend who had parotid gland surgery for a similar issue, and although it wasn't fun, everything turned out fine.

[Careful1]

It’s awesome that they did a biopsy for you. When I went through this the two ENTS I saw told me they don’t perform biopsy in that gland for certain reasons and that my only two options were to have my entire gland removed and sent for pathology or wait 6 months and have another CT scan.
You have had a decent work up and everything points to a cyst, those can and do grow bigger. I have one on my back that started out tiny and grew pretty big. I have had it removed twice because it kept getting infected and it keeps coming back. Unfortunately with cyst if anything is left behind no matter how small it will likely come back.

I know it’s easier said then done but try not to worry.

[Punky789]

Thank you for the encouragement and rational words. Its hard not to spiral when it feels like the doctor wants to start all over. I am still holding out hope it's a branchial cleft cyst and will revisit that topic with the ENT on Tuesday (apparently they can be hard to diagnose). I fell into a spiral of analysing symptoms and thought, "they kept asking if I had unintentional weight loss....and I have lost a good 20-30lbs in the last almost 6 months" But then my rational husband reminds me that I have been walking 8km a day and sticking to a strict calorie defefit in that time 🤷

But still. Feeling worried but trying not to think of it too much.