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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Sinister Neck Lump and Mutant Tonsil

PamelaJ
Posted by

Hi

2 months ago I developed a large lymph node on my left neck, I had night sweats and ear pain but nothing on tonsils, then 6 weeks later developed a small lump on my tonsil, over a week it quadrupled in size and is still growing.  Ive had a scan, core biopsy and MRI, the radiologist said at the time, it did not look good but would have to wait for histology on the biopsy for full diagnosis but considering the tonsil mutant, the possibility was they were related.  Im hoping to have a face to face with ENT on Thursday to discuss, radiology said on the way out, we will likely see you soon for CT.  So I'm expecting more detailed bad news on Thursday.  She said none of the other nodes on my neck were enlarged and my thyroid looked fine, but since then I have felt pain under my arms, like a burning and Ive convinced my self that its spreading, Ive also had a lot of chest pain. (I had pleurisy last year and for a few hours I thought this was back, however this got better and left me with a dull constant ache in the middle of my chest, which is probably, hopefully stress).  Im absolutely terrified as I have 2 young children and a dog with no one else to look after them.  Did anyone have any experience of the cancer spreading, could you feel it?  ENT have thus far only seen pictures of my tonsil due to Covid, but have been very good over the phone and trying to organise face to face appointments.  Are there any questions I should be asking on Thursday as Im not allowed to take anyone in with me, so just me, my paper and pen.

Thanks

Pamela

Beesuit
Posted by

Oh Pamela

So sorry you've got yourself in a state. It's not surprising as waiting for results is the most stressful thing and all the symptoms you are seeing seem to reflect that stress

I'm afraid there's nothing to do till you get those results. 

Some cancers do spread and some don't so there is no way to tell till you know what's wrong

Questions to ask. 

Do I have cancer and if I do what sort is it?

What will the treatment be and how long will it last.

Are there different treatment options and can you explain them? When will it start? Is the treatment aimed for a cure?

What side effects can I expect during and after treatment?

Is there support available?Can I have a contact number so that I can seek advice or help?

Those will probably do for a start

I hope you find out soon what is wrong

If you do have cancer once a treatment plan is in place the stress is much less

There are lots of us here, young and old, who have recovered well and are living a good life.

I myself am 16 months out of radiotherapy for base of tongue cancer and although I do suffer from a dry mouth I can eat most things and function fairly normally. It's a new normal. I'm 69 and today I was out in the spring sunshine on a 5K jog. 

There's light at the end of the tunnel

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

RadioactiveRaz
Posted by

Hi Pamela

This is Hazel aka radioactiveraz I am now 21 month post radiotherapy for tonsil cancer with several effected lymph nodes. Only thing I can add to Dani’s list is anything you don’t understand ssk then to explain again quite often medics forget they are dealing with general public. There are plenty of us on here who have been there done it got the t shirt I was 61 when diagnosed today I’ve done a 24 km cycle ride and helped hubby decorate. Please keep off dr google the facts on there are out of date and so much wrong info. Stick to this site and both Dani and I have blogs if you are unfortunate to join our club give the blogs a read. The waiting is definitely the worst if you get a cancer diagnosis once you get treatment plans things fall in to place. 

Come back and let us know the outcome. 

Sending hugs Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz.wordpress.com

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can  

PamelaJ
Posted by

Thank you Hazel and Dani, I will print out the questions and take with me.  I know it won't be good news but just hope its not the worst of the worst, you guys have really lived it and are inspirational, Im just praying it is curable and I can one day write my own blog.  Ive had precancerous cells on smear test a few times and had colposcopy, my HPV has been negative for past 10 years but I know it can reactivate to give positives again.  Generally I am a really positive person, I've been through so much in the past which normally makes me think if I can survive that I can survive anything but this is different, I think because of the kids.  

As well as the toothbrushes and humidifier from amazon I'm looking at ordering some kind of bell or buzzer, my kids are only 4 and 5, when they are playing they are so intense, I have to shout to get their attention, don't think thats going to work for a while, just trying to think of anything thats going to help, Ive already decided my son is definitely not going back to school 1June.  Any practical hints or tips are greatly appreciated.  I will definitely let you know how it goes.

Thanks again, I may be back over next few days as Im so scared

Pamela x

Riotsupervisor
Posted by

Pamela

sorry for interfering but humidifier could probably wait you need to talk to doctor first

if it is tumor there are many treatment scenarios but given your age and mass growth location you are likely to have surgery first

so getting nanny for your kids would be P1 as in case of neck dissection you won’t be home for a while 

follow up therapy could be hard to combine with parenting as well so you will need help

PamelaJ
Posted by

Not interfering at all, any input is useful, Im new to this. In mid covid, getting a nanny is very difficult, I have a friend that can come up for a few days at a time so surgery can be covered but if Im incapacitated for the whole treatment they will need to go into foster care, this is something that I have thought about and is on my list of things to do, ring social services. Though I was hoping it wouldn't come to that as Ive read some blogs of people still able to work during treatment, was hoping to do that too so I don't lose my job.  Managed to keep it through lockdown as were very busy at the moment, Im training ITU staff how to use some new equipment (virtual training of course).

PFJTHS
Posted by

Hi Pamela

My advice is don't overthink everything at the moment.  Take some very positive steps - and I feel considering how the children will be looked after is one of those, because there will be times when you need some help if you need treatment (cancer or otherwise).  Nannies can work now, but are finding it difficult to get parents to trust then re infection...

As has been said, don't Google it - you'll find your "symptoms" meet the condition you think you have - its just human nature. Take it step by step and take control of the situation rather than letting it control you.  You will find your own way of coping.  We are here to help you.  We will not "diagnose" but we each have a different route through our cancer treatment and can let you know what worked for us.

I think you are entirely right to have questions for your appointment.  Also write down everything that concerns you about your body and what has driven you to seek treatment.  During an appointment it is difficult to remember every last bit; so having a list helps - you and your clinical team.

Even if you don't have a defined diagnosis at this stage it is worth asking for the contact details of the head and neck Cancer Nurse Specialist.  They are a mine of sensible and pragmatic information so could be a useful sounding board during the waiting period.

Good luck, and here's hoping that you can rescind membership of this particular club very soon!  If you do need us; just shout.

Peter
Piya10
Posted by

I agree with PFJTHS. I forgot lots when in the room with the consultant and that was with a list and a husband !! But, literally burst into tears when the specialist MacMillan nurse made herself known to me (back in August) and gave me contact details and instructions to ring whenever I had an issue. They were (still are) my lifeline. They may even have suggestions to help you with the children? You probably aren't the only person to find yourself in this potential dilemma.

I managed to function throughout treatment (6 months post surgery/chemo/radiotherapy), a little tired after chemo session but, on the whole, not too bad.

Wishing you all the best.

Tricia

Piya10
PamelaJ
Posted by

Thanks Peter I am definitely overthinking but Im a firm believer in knowledge is a good thing.  Im only reading a few high impact factor journals and forums like this.   Ive had a quick look at nannies but its way out of my price range unfortunately and I don't have a spare room, so unfortunately it will be foster care. Childrens social care will not help to pay for a nanny they will only go with fostering (I have experience of this when I was in hospital previously).

Im still hoping and praying that I can rescind membership, hopefully Thursday will give more information

Pamela

Riotsupervisor
Posted by

Well, it all depends on the scope, but in general the younger you are the better

at 42 I had some issues after surgery so I spent 3 weeks at the ward

but managed to go through radio and chemo as an out patient without bloody tubes

been working all the time except time at hospital even there actually

no walk in the park though did my best to avoid video conferencing for as long as I could to avoid shocking those unprepared 

PamelaJ
Posted by

Im 46 and already have a registered disability - postural orthostatic tachycardia syndrome - POTS, many people are in a wheelchair with this but i am so determined to stay fit, my neurologist nearly had kittens when I told him I was going up Mt Everest 10 years ago, made me take lots of drugs with me.  I have to say I didn't summit, got to just over 6000m which Im happy with and didn't need any of the drugs, got dysentry on the way back to Katmandu though which has caused me gut issues for years since, but all worthwhile.

I am so stubborn and determined, a bit of a control freak and this has knocked me well out of my comfort zone.

Once I have a plan I will try to figure where the "worst" times will be and have a care plan for the kids as I don't think it will do my recovery any good to be apart for so long (even if they do drive me nuts - lockdown fever).

Video conferencing is awful and am sure is responsible for a lot of my neck and back pain (trying to hide my chin lol). I have 3 colleagues that do same as me and they are being really supportive, Im trying to work as  normal, but they're not having it, which I'm very grateful  for.  Im still looking into whether I can claim sick leave as my contract is under German law, but will sort something out

Riotsupervisor
Posted by

German law is on your side btw

we had team members in Germany and couple of them were sick for up to 6 months which is a challenge in public US IT company

there is absolutely no way to fire you under German law if you are sick so no worries here

PamelaJ
Posted by

WOW that is amazing news, thank you so much for that, my boss knows and is very supportive but she is in Switzerland so wasn't sure either, so we decided not to tell HR for the moment.

I think its a good idea to keep working for as long as possible, even if its just to try to maintain some normality, and maybe a bit of distraction.  I have said that once I'm well I will do the on call for a month to make up for everything, think that will go down well

Riotsupervisor
Posted by

You are right work helps not to fall apart

good luck with your appointment tomorrow!

PamelaJ
Posted by

So unfortunately as expected I don't get to rescind my membership to the SCC club, confirmed yesterday that its T2N1 at the moment, HPV+ thankfully, pet scan not done yet so don't know about mets, though they have said unlikely, fingers crossed.

They have forwarded my case to Oxford for the PATHOS study, so first step is surgery in a few weeks, then after randomisation of study I will find out the radio/chemo regimen.

So now that I know I feel a little more relaxed, had a little G&T last night and managed a whole 6 hours sleep, my weight has dropped to 50Kg so now going to try put on a few kgs before we get underway.  Started with a huge plate of sticky toffee pudding for dinner last night, will make a fry up for breakfast and bake some cakes today.

My biggest concern for treatment is my fluid levels, as I have a neurological condition, if I become dehydrated I fall unconscious by reading blogs it sounds like this could be a major issue, I have asked that they consider fitting a PEG from the beginning to keep on top of this, if anyone has any other ideas or advice would be greatly appreciated.

They have reassured me it is curable so the fight is on now

Pamela