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Thought Branchial Cyst for Months - Turned out Cancer

LeoS2323
Posts: 147
Joined: Mar 2012

Hello all - I am 34 years old, from Liverpool in England and have just been diagnosed with cancer this week after many months of tests having strongly suggested otherwise. Bit of a shock but I'm up for the fight!

I had quite an unusual presentation of what will be an oral cancer (of unknown primary) and was wondering if anyone had shared a similar experience?

Just over 7 months ago I had a big lump appear in my neck overnight. I went to the doctor and went through what I'm sure many others went through - antibiotics, blood tests (all normal), ENT investigation (thought cyst), FNA biopsy with ultrasound (inconclusive, dead cells), CT scan (normal), TB test (negative), even a PET scan which hardly lit up at all around my neck (it lit up in my duodenum so I had to have a gastroscopy but it was inflammation due to reflux). All pointed to a branchial cyst it seemed, the lump was mostly fluid.

So they removed it from my neck just over 3 weeks ago, said 'good news its a branchial cyst', packed me off home and scheduled a follow up for 3 weeks later. Then came a worrying phone call two days before the scheduled appointment asking to bring it forward by 2 days after a second opinion had been sought.

It turned out to be a salivery gland tumour which had presented in a very unusual way giving the appearance of a cyst, and is a very rare type which is why it has been missed for so long. So although I had an operation to remove a few weeks ago, it’s more complicated than that unfortunately! This type of cancer is a secondary one, so basically it has moved from somewhere else in my body. From the analysis of the tumour they know it is a salivary gland one so they know the original is somewhere in my mouth, neck or throat – could be on a tonsil, the base of my tongue etc. The problem is it is so small it is hiding even from the PET scan.

The good news is that the reasons it has been so hard to diagnose are it seems to be fairly slow growing (was described as intermediate but the oncologist said they would go for the highest grade and this may be low) and the original cancer is very small wherever it is which makes it more treatable. It also seems is also in an area of the body which tends to me more curable. The doctor described what I have to his knowledge so far as ‘eminently curable’ so I seem to have a really good chance of fighting it. It’s a hell of a sting in the tail having got through so many tests with the all clear, but I’m ready to take it on and looking at it as positively as I can.

I’m sure there must be many people get worse news on how developed their cancer is, the Professor of Oncology gave me a very positive prognosis as things stand.

I have to have an MRI scan within 2 weeks (as it is the only one I haven't had) then he will operate on me on the 23rd April to remove all the other glands on the left side of my neck where the secondary cancer was to ensure it hasn’t spread to them - and my tonsil on that side, as well as doing biopsies of my throat and base of my tongue.

The aim is to try to find the primary cancer so they can treat it and cure it. Apparently there are some very rare cases when the primary never turns up (initial tumour was so small the immune system deals with it, but not before a few cells have escaped) but it seems that is too rare to actually be something to hope for realistically.

So I was wondering if anyone else had been through a similar journey to me? Hoped to have the opportunity to share experiences and understand what lies ahead...

All the best of luck to everyone here. Leo

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Leo,

Welcome to the exclusive club! By invitation only. ;)

I'm a little kid as you are (I'm 31) and like you
I'm just at the beginning of the journey.

In my case it was pretty clear where the primary
tumor was, but I remember the wait before getting
the results of the initial scans. Not knowing what
and how many are where is just tough. I feel for you.

Also, I've had a little cut on my tongue for a few
months before getting it checked and my dignosis was
somehow delayed too (and this one was not doctors'
fault, just me being stupid).

This is a bit gratuitous but I tend not to like
doctors who make strong statements like "eminently
curable". I tend to prefer the ones who are able to
say "I don't know" or "I don't know yet". It makes
me trust more what they actually tell me and it gives
me a feeling that they are thinking about my case
instead of giving me some pre-packaged speech.
Make sure you see some other doctors as well. In the
worst case you'll realize how good your first doctor
is by comparison..

Anyways, here we are my friend, and we'll face it as
well as we can.

:)

Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Hi Leo,
Welcome to the board, I'm sorry you find yourself here but
There are some fantastic and knowledgeable people here who
Will definitely give you some great information and some moral
support as you go through your treatment. I think you are the
First scouser on the board, I'm originally from Manchester
but I've lived in fort Lauderdale for 24 years. I'm half way
Through treatment for stage II tonsil cancer, I've got the usual
Side effects but as most of the people here will tell you it is
Doable. The people on this board have been so supportive
It make thing's feel much better.

I will talk more later as I have to go to treatment now,

God bless,
Tonsil Dad.

Dan.

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

had a squamous cancer arising in a branchial cyst 20 years ago. He was treated with surgery and radiation, and is doing fine all these many years later. Your case, though unusual, is heard quite often on this board. I'm curious to know the exact tissue type. You suggest that it is not the common squamous variety, but I'm unable to tell from your post exactly what tissue this malignancy is derived from. In any event, it sounds like you've got a reasonable plan, under the circumstances. None of this is much fun, but it can be accomplished. Welcome to the board. Keep coming back.

Pat

LeoS2323
Posts: 147
Joined: Mar 2012

Firstly thanks for all the replies all and kind words, really are greatly appreciated! Nice to know I am the first Scouser, although I'm sure people will forgive me for wishing I wasn't!

The exact type is a 'mucoepidermoid carcinoma' if that makes any more sense to you longtermsurvivor (you seem to be a knowledgable type!). Think the more common one with this type of presentation seems to be a squamous cell - the ENT nurse said it was the first time she had seen this.

Although in my case it gave the appearance of a cyst, unlike an actual cystic metastasis this was in fact a tumour of the type described above which had moved into the gland - but because of its makeup (fluid filled, necrotic centre) gave the appearance of a cyst.

As I said I'm kind of a step ahead as usually after this discovery I would be getting my first PET scan, but I have already had a clear PET scan (which was of course ultimately wrong) but I think it at least gives the doctors encouragement in terms of the primary being very small at present, and the secondary one which has been removed having been seemingly inactive or 'sealed away' enough to hardly react at all to the PET.

All the best

Leo

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

OK, I got it. It will be interesting, in the usual unfunny kind of way, to see what else they advise you to do, if this was a met and not the primary. You know, there was someone who posted here just last week who had a met from an SCC to a neck node, with no primary every found. They chose to not do any additional treatment beyond removal of the node, and a number of years later, no primary ever surfaced. That was a gutsy call. But it goes to show you, no one has all the answers. It is unsettling to not have all the answers spelled out in bold print, and that's what your situation is. But honestly, that's really what we all have, and just putting one foot in front of the other is the best we can do. others with MEC will join in when they see your post. It isn't the common cancer, but this board tends to collect a bunch of wierdo's and misfits, ya know.

Pat

LeoS2323
Posts: 147
Joined: Mar 2012

Yes waiting seemed to be kind of an option, but not the favoured one of the oncologist.

I think the unusual aspects of my presentation are usually this shows up as a sore or a growth or whatever, and for MEC to present as a met with no known primary is what makes it unusual (think its more common with SCC etc.) He seemed to think (single figure chances he said) that is was unlikely to have moved to any of the other nodes around it.

I think it seems strange that I had this metastatic tumour in a gland in my neck of a decent size, but it hardly registered on the PET scan after it had beeen there for 4 months. I thought PET was supposed to only be fallible on size (the tiniest ones don't show up)?

Also the primary was nowhere to be seen at all - I guess this all counts in my favour, it has to be a good thing that nothing was showing enough activity for even a PET scan to light up and I am going with the belief that this has to give me a better chance. The PET was done about 2.5 months before it was eventually removed nearly 4 weeks ago.

The oncologist seemed to be very positive anyway, that we had something I had a good chance of beating. I guess they have to give you the real picture, I'm hoping so anyway! This guy has just about the highest UK accolades you can achieve in head & neck / oncology surgery in the UK (personal chair etc) and sits on boards dictating national policy so I guess I am fortune enough to be in good hands (bit of luck in it over here - national health!).

I suppose the worst thing about it is the unknown - everything seems to be hiding away with me, which is why I had so many clear scans. The oncologist said he would rather take preventative action than sit and wait, so he plans to remove the other nodes on the side of my neck where the met was just to make sure, and also the tonsil on that side as well as some biopsies of throat, base of tongue etc. His aim is to try to find the primary if he can.

If they don't find it then we have a bit of a watch and wait after that - he wants to try to avoid radio / chemo if he can he said (especially as they don''t actually know where to target it). It would be a bit difficult waiting for something to turn up for who knows how long, but I suppose if we are on top of it then that has to be good.

I have two beautiful and very little ones of one and three years old, Horrible though this road will be I'm sure I'm not at all scared of the surgery or the treatments or whatever I have to do to see them grow up. Thats the thing that scares me - missing out! But I won't, I know it.

Thanks so much for the responses and the wise words Pat, its a massive help for someone very new to this in my first week of getting my head around it all.

phrannie51's picture
phrannie51
Posts: 4031
Joined: Mar 2012

You will find much support and knowledge here...

Like ooo, I'm just beginning this journey, myself...and my story is the same as so many others. Lymph node in my neck swelled...got the "wait and see", then the antibiotics, then finally a referral to an ENT. I have Stage III NPC. I haven't started treatment yet.

Just want to give you a warm welcome tho I'm sorry you had to join this club.

p

LeoS2323
Posts: 147
Joined: Mar 2012

Thanks Phrannie, all the very best of luck going forward.

tommyodavey's picture
tommyodavey
Posts: 405
Joined: Nov 2011

Which one I am no one can tell. ;>) Welcome to the forum Leo, you will find this place to be a wealth of information for you.

I am one of those with MEC. My right lymph node was swollen for almost a year. Showed it to four different doctors and none were concerned. Had a recurring sinus infection that drove me to see an Ear, Nose, and Throat specialist. (ENT) She scoped me and found a tumor on the base of my tongue.

From that appointment I've had: a biopsy, partial tongue removal to take out the tumor, radical right neck dissection that found two positive nodes. The doctor removed roughly 45-60 nodes. Six weeks of healing from that and right now I am at #28 out of 30 radiation treatments. (low dose) April will be a recovery month for me.

Like you, my tumor was a low grade, clearly defined tumor. He sliced down one layer more and found no more cancer. So it was a stage 3 because of the spreading to my neck. T2N2M0

Why the other doctors didn't question my swollen node is beyond my understanding. Mine should have been discovered a year earlier. But considering it grew so slow I probably had it for over 5 years. I felt no symptoms at all.

I don't really understand your case where they keep looking for another tumor. This cancer tends to stay in minor and major salivary glands. They also checked other glands like my breast to make sure it hadn't spread. My PET only showed the tongue and lymph nodes so that's all they did. And like you, I was told it most likely won't come back due to me getting the low dose radiation.

Keep us updated on what you find out. I am very interested as we share a very uncommon cancer. My surgeon said he has only seen three MEC's in 25 years of practice. None on the tongue. At least we can say we are unique!

Heal well,

Tommy

LeoS2323
Posts: 147
Joined: Mar 2012

Hey Tommy, thanks for the reply - we do seem a rare bunch! The ENT nurse said she had worked in ENT for many years and never ever seen a case of MEC. It's great that you seem to be nearing the end of your journey, and I wish you all the best in finally seeing the little bugger off!

I think they are still looking for my primary because it is so small it doesn't even show on a PET scan. They know it will be somewhere there is a salivary gland but they physically cannot see it which is the reason for the operation, tonsil removal and biopsies of tongue, throat etc.

The PET showed no distant metastasis but that is my only big fear - that in the 2 months or so from the PET when the primary was invisible and the much bigger met was doing so little on the PET scan it hardly registered to it being removed it may have got somewhere else which would put me in a totally different situation. The other unusual thing is the met which showed has already been removed in my case - there were no visible signs of it having spread when they did the operation which is s good sign too. The doctor said 'single figure' chances of spread to other nodes based on all this.

It would be massive if it hasn't spread to other nodes as that will be the secondary gone and we can concentrate on the primary which as of 2.5 months ago is too small to find. I just hope that having had it there for 4 months before the PET and it have not done anything much, that the extra time won't have changed the picture. If the situation is as it stood on the PET the doctors think I have a great chance of cure and I am ready to do what it takes!

There is a chance of the primary never showing in a case like mine, but I think that is a small one. They say in rare cases the immune system beats the primary as it is very small, bug not before a few cells escaped. It is certainly something to hope for though, it would mean I was cured already if there was no other spread to surrounding glands! Very unlikely though so I will park that one...:)

My operation to remove what they thought was a cyst was actually cancelled 3 times for different reasons - my fear is that having cost me. But I guess you felt the same after all those doctors sent you away? Mine is actually graded intermediate but the oncologist said its behaviour is more towards low and the lab always grade it to the high end of possibility.

My next step is an MRI scan as that is the only one I haven't had, as the different type of scan may reveal the primary. It's kind of mixed feelings - the doctor wants to find the primary before it goes and treat it so I guess we want it to show up. But it seems strange having a scan and wanting cancer to appear! Good luck with finishing the radio Tommy, and please let's keep in touch as you seem towards the end of a tough road which I am starting to tread. It will be nice to read that yours is gone for good at the end of this treatment! Then I can start with the same aim...

One practical question - how was the radical neck dissection? My surgeon is going to do that on the 23rd April.

All the very best

Leo

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Leo,

I'm almost 4 weeks out of a modified neck dissection (only on one side, lymphnodes level I, II and III removed). Even if yours will probably be more extensive, what I can tell you is that right now I'm back to do pretty much whatever I want. The area around the scar, up to my cheek and ear are still a bit numb and slightly painful, but only when I touch them and constantly improving.

The first couple of days after surgery the neck is really weak and stiff (more than I imagined.. but don't freak out, you'll see yourself improving day after day). For the night I had a recliner so that I could get up and go back to sleep (at 45 degrees :) with some independence.

Good luck!

Dre.

LeoS2323
Posts: 147
Joined: Mar 2012

Hi Dre.

Thanks for the response, maybe mine isn't in fact a 'radical neck dissection' actually I just thought that just meant all the glands on one side of your neck.

He didn't describe it in exact terms, but said it would be the nodes on one side of the neck where my met was. I have actually already had the secondary tumor removed and the surgeon seemed to think it was clean and said it didn't penetrate the blood vessels.

He also didn't see any evidence of cancer in my neck when he was in there, but then he thought it was a branchial cyst so I suppose he could be wrong about any of the above!

My MEC has been a really elusive one - the primary was too small to show up on a PET scan, the secondary although a good size hardly lit it up at all to the extent they were really sure it wasn't cancer. Even when they took it out my neck they still didn't think it was.

But here I am, and advice from good people like yourself makes the road ahead clearer and helps no end. Thanks again, and good luck to you too.

Leo

tommyodavey's picture
tommyodavey
Posts: 405
Joined: Nov 2011

I was told up front that it wouldn't be too painful and it wasn't. Lots of swelling and it looks worse than it is. My surgeon cut me on one of my wrinkle lines so it should almost be invisible a year or two from now. If not, who cares?

The only problem I've had with it is nerve pain. My Dr. had to stretch a couple of nerves to get to the cancer and now I'm paying the price. I have a little paralysis on my right bottom lip. I keep biting it when eating. And I have to use my hand to move it to open my mouth to eat. But it should go away in 9 months to a year. (I hope) The other nerve is my right arm and shoulder. He had me raise my arm up to my ear in the hospital and I couldn't do it. So he gave me some exercises to do to help. That too should go away in time. If not, I'll start taking Lyrica as I've heard it really helps with nerve pain.

I was having a tough time shaving the area around my neck incision. No more. After radiation, I only have thinned out side burn hair and a little on my chin. Luckily I didn't lose my moustache. At least I'll save some money on razor blades.

The most painful surgery was the removal of the tumor on my tongue. Couldn't swallow for a week or more. Ended up back in the ER where I got IV fluids. After that it healed well enough to eat after a total of three weeks. Getting your tonsils out may be similar so don't be surprised if they keep you in the hospital for a few days to stay hydrated. It'll hurt, but not for too long. Just grin and bear it. Not much of a choice, eh?

My Dr. actually told me in the very beginning that this treatment will be the worst walk through hell I'll every face. So at least he was honest but it wasn't as bad as he said. A lot of it is my attitude. I've stayed very positive throughout and I think that helped me heal faster.

Keep the Faith Leo! Once this is all over you'll be glad you did what you did and can call yourself a cancer survivor. All the odds are in your favor.

Tommy

LeoS2323
Posts: 147
Joined: Mar 2012

Tommy your approach and positive words are an inspiration!

We do share a very rare cancer and the sharing, especially with someone like yourself who is coming towards a positive end of this very tough road is helping massively.

I have always been a very optimistic and very positive person, and hopefully that will stand me in good stead as it has you. Hopefully you can be a mentor to me...:)

Not only have I a rare cancer, I have it at a rare age for this (more prevalent either much younger or in 50s) and with a rare presentation (fluid filled gland, sizeable but didn't light up on PET scan, unknown primary even after PET scan looked like a cyst).

I guess I am a case study!

But there is no point in looking back or feeling sorry for myself is there, we've got to take it on and win and I guess all the above is now in my favour - the fact that my cancer didn't even light a PET scan up it was that quiet, and the primary is too small to show at all has to be good.

I really appreciate the practical advice too. As my primary is still in an unknown location somewhere in a salivary gland, I don't know what the practical results will be of my eventual surgery. If it turns up on the base of my tongue, my oncologist suggested laser treatment may be an option. Professor Jones is actually a pioneer in the UK in the use of laser surgery to preserve function in head and neck surgery and has opened the biggest centre specialising in this in the UK.

So if it turns up there and he can zap it with a laser - that sounds pretty cool to me!

I understand the road ahead will be tough - invasive surgery, good possibility of radiotherapy etc. But I can handle all that I hope, we don't really have much choice anyway do we? I hope I can handle it as well as possible. I am a big bloke; 6"3 225 lbs, semi professional footballer until the kids came along (or I should say soccer player on here!) so I guess I have the size and strength to take some weight loss.

If they find it and it comes down to me having the option to have the radio to ensure it is eradicated for good after surgery then I will take it without question. I can take the suffering and pain for the time being as long as it means I can see my kids grow up and grow old with my wife. That really is all that matters to me right now.

I am going to keep exercising as long as I can, on the treadmill doing 3-5 miles every couple of days and going to yoga with my wife. I think the exercise will keep me well mentally and hopefully help in some small way physically - there seems to be some tentative evidence to suggest it does help in that way, but very strong evidence it is good for wellbeing after diagnosis.

Thanks so much for all the advice and kind words Tommy, it really means a great deal to me and I hope you don't mind me adding you as my first friend here! I guess perhaps you have finished your radio now or very nearly? Good luck getting over that finish line!

All the very best

Leo

rikster519
Posts: 2
Joined: Mar 2012

Hi there. welcome to the world of it could be this, ity could be that. I'm a 54 yr old male with the same beginning s you. 2yrs ago woke up with a lump on my right neck. small at first but grew gradually. went to doctor right away and sent to a head and neck specialist. don't worry he says its just a branchial cleft cyst. non cancerous, less than less than, thats right two less thans 1 % chance of cancer. followed by a fine needle aspiration which showed neg. don't worry it dosen't have to be removed right away as it is only cosmetic. no pain no worry. sometimes cutting around the neck can cause more damaged than its worth. if it gets bigger we will remove it if necessary. at a follow up 18 months later he decides to operate. one week before operation guess what a more agressive second lump on my right neck, my doctors excited. very rare to have a bi-lateral brancial cleft cyst. less than less than thats right two less thans 1% chance of this. very rare, and his first double excision, hence the earlier excitement. operation goes smoothly. at follow-up to remove staples, my surgeon says don't not worry its less than less than, thats right two less thans 1% that its cancerous. pathology not in yet. 2 days later that dreaded phone call to come in and talk. i`m sorry but i should have removed it sooner. its not a bi-lateral branchial cleft cyst but stage four base of tonge cancer. heres the timeline. 2yrs ago lump, jan.2012 second lump. jan. 23,2012 removal. feb.2012 bad news. feb.12,2012 secound operation for more tissue samples to confirm.mar.2012 ct scan, mir scan, peg scan, bone density scan, ultrasound. 3r,operation to insert feeding tube in stomach due to agressive first round of chemo and 2 weeks of daily radiation . I now have a wonderful oncology team cleaning up this mess. am i optimistic, sure i am. they are hitting me hard and fast and hoping for success. am i bitter, no hence the earlier humour. one day at a time for the next two months. so hang in there its not that bad. i`m in treatment and without a positive attitude i`ll get nowwhere. will keep in touch. good luck.

tommyodavey's picture
tommyodavey
Posts: 405
Joined: Nov 2011

Hey Rikster and Welcome to the forum. There is so much good information here that most all questions can be answered.

So what type of cancer did it end up being? It sure sounds like mine. But my doctors didn't send me to a specialist. The lump on my right neck was there for 9 months to a year until I saw an ENT for sinus infection that wouldn't go away. She scoped me and saw the tumor right away. It was fairly large and surprised her that I didn't feel anything. If not for the sinus infection I may have had it grow for another couple of years.

Hope you stick around and join the group,

Tommy

nimishbhatia88
Posts: 1
Joined: Sep 2013

Hi Leo, I read your comment on the neck cyst. I hope you find this in good health. My cousin is experiencing the exact sequence of events as yours. It would be great if you could share your status on the disease as on date. Also if you could guide me on the treatment. My email id is nimishbhatia88@gmail.com

 

 

phrannie51's picture
phrannie51
Posts: 4031
Joined: Mar 2012

It's been quite a while since we have heard from Leo.....why not start a new thread telling us about yourself and what's going on....I'm sure you'll get answers from others....and you will find that many of us are still here.

p

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