Scared I might have tonsil cancer??

I'm sorry for the long post, but thank you to anyone who takes their time to read through it.

 

So all of this started about 5 years ago! I got really sick (I don't know if it was viral tonsillitis or what), but my throat was very sore, right tonsil super swollen, right lymph node super swollen, etc. Eventually, I recovered, and my tonsil/lymph node decreased some, but they remained a bit enlarged. I was concerned about it but didn't have insurance to get it checked out, and so I just let it be. From that point on, whenever I would get a sore throat from a cold or whatever, it would always only be on my right side. However, as far as the size of the tonsil/lymphnode they never really got bigger so I tried not to worry about it.

Fast forward to a couple months ago, I have healthcare now, so I decided to get the lymphnode checked out (for some reason, the tonsil never was a concern for me, it was always the enlarged lymphode). My GP referred me to get an ultrasound of my neck, and it came back that the lymphnode lump was just fluid build up. Fast forward to a couple weeks ago, I noticed that my tonsil had become a bit larger. Not "huge," by any means, but big enough to where I can feel it when I swallow with a dry mouth (if I'm drinking something or eating something I can't feel it.) I've also been having some ear pain/feeling of a blocked ear on the right side as well. I contacted my GP, and they prescribed antibiotics, but the tonsil doesn't hurt and the antibiotics didn't help, so they referred me to an ENT.

Given our current circumstances, I wasn't able to get an appt with the ENT until May 7, and even then it's only through a video call, so I don't know what she will even be able to examine over video.

Keep in mind, I'm 22 years old, don't smoke, rarely drink, had my HPV vaccine. This all started back when I was 18.

I'm just really scared, and it's all I think about. It doesn't help that the appointment is so far off. I guess I'm just looking for some support, and perhaps stories from people who have had the same symptoms, but it wasn't cancer? Of course, looking up my symptoms on Mr Google was an awful idea, because everthing on their is a sign of cancer. 

Idk, but thank you to anyone who has taken the time to read this and respond, I really appreciate it so much, and I wish you all the best during these scary times.

  • Hi , similarly to yourself I spent weeks knowing not to google but just couldn't help myself and absolutely terrified myself .   My situation is different , I am twice your age for starters    I don't normally write on these things but my recent experience over the last six weeks means I've felt a lot of what you are going through 
     

    the main thing I've learnt is that most of these lymph node infections genuinely are due to infection but if like me you just have that feeling then please force someone to see you.    it's worth me pointing out that my outcome is cancerous albeit completely treatable so DO NOT let that scare you more but DO use it as inspiration. To go and DEMAND someone looks at you .

    having tonsil infections most of my teenage years , it was never something I'd paid much attention to.  Had a family bereavement in Feb so put the ear infection , throat infection and swollen glands down to stress ( as did the doc ).  Ultra sound on glands ( had to pay £300 private ) showed swelling so got some antibiotics that didnt work 

    six weeks later swelling increasing at a significant scale.  Still struggling to get face to face ENT help due to corona. ( and I pay for private medical ).   In the end a radiologist had a quiet word with me ....  "don't let anyone stop you being seen , this needs looking at " 

    the next day I rocked up at a&e , ( and these are empty at the moment with corona !)  I told them the lump in my throat was stopping me swallowing and I urgently needed to see someone in ENT .   
    I got an MRI that day , and it still took a couple of weeks of outpatient appointments with diff ENT people but thank goodness I did.    I have a high grade lymphoma - which is really unusual under 65 but because I turned up at a&e that day I am now having treatment for something which is over 90% curable as I caught it early 

     

    statistically you really have nothing to worry about and need to tell yourself that - but my god go and fight to be seen. - getting to be seen is the hardest bit but you won't feel better until you do.     Either way you will feel so much better!   Good luck.   Please do it.  Fighting to be seen saved my life       

     

  • [@newbieC]‍ 

    i am so sorry to hear if your diagnosis but thrilled you got it diagnosed in time especially with what's going on at the moment. I'm having similar issues and just wondering what your symptoms were?

     

    becky x

  • Hey!!

    i have similar symptoms I'm 24 though! I also got sick but 8 years ago so sick that I had sepsis and pneumonia and ARDS and was placed on a ventilator for just under two weeks. I mention this because I wonder if maybe it could be responsible like you mention for swollen nodes. I have what I feel swollen nodes although apparently just palpable. I had an ultrasound on my neck which said no lymphadenopathy detected but measured a cervical lymph node (mid neck) and supraclavicular node (collarbone) and said my submandibular (under jaw) ones were okay. Even though my lump is definitely palpable the doctors have felt it but I'd say it's under a cm just ! Although I can feel loads under my jaw.. some tender some hurt when I move my neck, some not so tender only if I poke them! I also have some in both armpits one I'd say is 1cm-1.5cm ish but when scanned the lady said she wasn't concerned and that it's because I shave... I'm not convinced  

     

    bloods are fine, they want me to do a chest x-ray. However I'm calling the doctors Monday because I don't feel comfortable with just a chest X-ray I first noticed the first lump in November. It's been 6 months and none of them have gone down, my ear pain is still bad, my throat constantly feels swollen, my left rib cage is sticking out noticeably, a cough that comes and goes and my tonsils are enlarged (with white spots but not tonsillitis and also a blister looking thing) so I'm super worried and I wanna relax and enjoy the time with my son who's 17 months but I'm just worried all the time now with this virus which apparently is really bad if you have lymphoma etc and my fiancé works in the fire brigade so likely to be around it I'm honestly so stressed so I feel your pain and worry but they've told me it's nothing so maybe it is! Just keep pushing them for an answer x  

  • [@newbieC]‍ 

    I am sorry to hear about your diagnosis, but I am so glad that it will be easily treatable. Thank you for your input and support, I wish you the very best.

  • [@Becksxxx]‍ 

    I am sorry to hear that you are going through this as well. It's super frustrating not being able to get any answers, especially during this time when answers are vital.

    Thank you for sharing your experience. I have heard that a bad infection can cause tonsils/lymphnodes to swell permanently, and that it's not much to worry about, so I hope that is the case for both of us. Please keep us updated on your process, I wish you the very best <3

  •  

    @Becksxxx ​​​​​​key thing defo keeping the reality in mind that the likelihood is that it's just infection but still push hard for proper investigation just in case.    Id still be waiting if I hadn't really chased and forced myself on them via a&e

     

     

    symptoms that I had ( although I don't know what is coincidence , or a result of my low immune system)

     

    dec 19 - bad tooth infection and bad emergency root canal 

    jan 19 - bad cold ( mum terminally ill so zero sleep didn't help ) 

    feb 19 - lost mum and got sick with tonsillitis , ear infection , and bad flu.   Antibiotics given for ear and throat infection .   Mid Feb gland on neck popped out on the same day I had bad ear pain and felt my ear pop .

    antibiotics helped throat But still ear pain .   Doc said bad infection but I got a bupa scan anyway - they said likely infection come again  in four weeks   Lympthnode felt like golf ball 

    5 weeks later scAn again - just swollen lympthnodes but much bigger   Still nothing suspect on scan  but the lump felt like an half tennis ball and uncomfortable giving me panic attacks     I was told to go to nhs neck clinic and force ENT to see me ( spent hours on phone trying to get someone to see me ) 

    in the end I went to A&e at 9am abd that's where I finally got help 

    MRI showed a mass in tonsil and node in neck 

    Needle biopsy then done which was inconclusive 

    bigger biopsy done which showed non Hodgkin high grade lymphoma   , started  chemo 6 days later 

    I got dismissed so many times it scares me ..  with young children my priority is being here for them and now I'm having treatment there is no reason I won't be 

    good luck , my case is really rare but always fight to get things rules out !    

     


     

  • Hi there

    I understand the worries and frustration of not knowing but would advise anyone to stay off Google if they can and stick to NHS based sites or this site/Macmillan who have plenty of support from other peoples experience. There is so much misinformation and out of date as well and you can guarantee to get any illness from Google.

    Many reasons why people have symtoms and are referred to ENT to have checked and not automatic anything sinister and often can be and is something minor.

    I was disgnosed with tonsil cancer around 2 years ago and after treatment and recovery am absolutely fine again. I was told by my consultant that this type of cancer brings addttional challenges due to location but is one of the most treatable and statistically one of the highest success rates of complete cure.

    It's unusual for young people to be diagnosed and normally over 50 but thats generalising.

    The other myth is on tonsils itself as I had mine removed when I was 4 so thought it coudnt be tonsilitus. I was informed that due to the tonsillitus removal procedure years ago it was still possible to have them re grow as mine did and I had to have right one removed as well before other treatment.

    Although it's difficult, try and stay as positive as you can and hopefully you will be seen sooner rather than later and with good outcome.

    I kept a blog from the get go and happily share my journey to anyone who is going through actual treatment.

    Best wishes

    ian

     

     

  • [@newbieC]‍ 

     

    thsnk you so much for sharing your story! I am so sorry to hear if your ordeal and the loss of your mum. It's so hard isn't it when you have your children to think about too! It's just me and my son at home he's 17 months, I'm 24 and you just want to make sure everything is fine for them. My fiancé works for London emergency services and has been away for a while but back Tuesday I'm so nervous because of this virus and ultimately my worry has been lymphoma. Bloods have suggested no infection and the ear pain, swollen throat and glands (multiple including neck, armpits, collarbone) haven't gone since at least December where I found my first lump nine of them appear huge except the ones under my jaw which have always been bigger in size I think. Ultrasound said no lymphadenopathy and now with this virus it's difficult to get anything looked at especially when I've been home alone with my son for past 4 weeks! 
     

    thsnks so much, hope your recovery is as quick and easy as possible for you x

  • Good luck to you and everyone !  You will he pushed away as there really is a good chance it's nothing 

     

    Don't give up x