Sinister Neck Lump and Mutant Tonsil

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

  • 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

  • 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

  • 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

  • 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

  • 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).

  • 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.

  • 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

  • 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

  • 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 

  • 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

  • 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

  • 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

  • You are right work helps not to fall apart

    good luck with your appointment tomorrow!

  • 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

  • Pamela

    sorry to hear this but unfortunately the probability was high based on your symptoms 

    at least it is t2 and hpv positive makes a big difference you can search for new HNC staging in US they see t2-3 hpv+ as t1 now

    treatment is standard, but with your weight food is a challenge as well tube is a good choice from the very beginning as I lost 20+% of body weight by the end of therapy 

    you should really try to gain as much as you can beforehand 

  • Hi Pamela. Welcome to our small and exclusive little club. Sorry you’ve found yourself here but as your consultant says it’s highly curable ok won’t lie The treatments pretty tough and recovery can be long but hey look at me. I was  61 pretty fit  had just cycled 1100 km ok was taken to a pretty low point but am back now 21 month post radiotherapy living my life pretty much as before with a few exemptions meat bring the biggest one but small price to pay. I managed to put spot 11 lb on due to eating things I would usually eat got quite psryislbto double chocolate magnums. Yes hydration is vital and I would hope that they do give you s peg on health grounds if nothing else. I had n g tube for 45 days in total from week 4. I still drink st least 3 litres of water a day. 

    Anyway here if you need anything or just a rant 

    onwards n upwards Hazel x

  • Morning

    I’m so sorry you’ve found yourself in the club nobody ever wants to join!

    My hubby finished his treatment for SCC tonsil cancer mid Jan 2020.

    Please shout up if there is anything I can help you with.

    Ken had a PEG tube fitted before he started treatment. He initially hated it but it became a lifesaver. Everything went in the tube including all medication and loads of water to remain hydrated.

    Good luck.

  • Thanks Sharon

    Im glad your husband finished his treatment before the lockdown and I hope he's doing well now.  I will definitely be asking for a PEG, doesn't sound like the most pleasant experience but if it keeps me conscious will be a lifesaver too.

    Pamela

  • Feeling a little bit deflated now, had my MDT, which consisted of the ENT surgeon only, telling me that they now are not going to do surgery but go straight for chemoradiation.  Also the letter they sent out was different to what they told me at the time, Im now T2N2a instead of T2N1, tumour is apparently now 2.8cm instead of 2.1cm and with extra capsular spread of the lymph node. There were no further tests between diagnosis and MDT so a bit baffled. Had my PET scan today and apparently the oncologist, whoever he/she might be, don't have a name will be in contact when we have results.  Feeling a bit abandoned and scared of what new things the PET will show, Im sure I shouldn't be in this much pain when I haven't had any treatment. Haven't been told any next steps or timeframes and don't know if i will be able to see a dentist.  Sorry for the negative post

    Pamela

  • Hi Pamela 

    dont be down chemo radiation is the way to go one way to look at it is how my oncologist explained if after all treatment was done and I was one of the rare times  when further stuff needed doing surgery could be then done on lymph nodes. Plus going straight into treatment you won’t have to wait for any scarring to heal. Thr numbers it’s quite a delicate balance I went from t2n2 nm to the n2 being  several poorly differential ones including one near top of spine which ruled any surgery out straight away. Look at me know 21 month later living my life riding my bike. Don’t get down it’s a mere blip in your life there’s lots in here with no surgery . You will get more info soon there’s a protocol that they follow that's a tried n tested one albeit for us the patients not quick enough. I was 63 days from first referral to first day of treatment which is NHS guidelines 

    hope this helps Hazel xx