Lymphoma scare due to right tonsil being larger!

Hey Everyone, 

I'm Alice and I'm 20 years old. I recently thought that I might have cancer but it's been confirmed that I don't! I wanted to write this post after I knew for sure to help anyone out there who is currently paranoid because coming to this cancer chat when I was feeling freaked out helped me a lot. I will say though, if you're having symptoms that you suspect might be cancer related and you haven't gone to the doctors, please do so asap. Nothing on the internet can accurately diagnose you, it will only make you more scared and anxiety in itself can make you feel ***. Everyone is different, please do the best you can to avoid googling anymore than you already are. 

Two months ago I had a lymphoma scare due to my tonsils being extremely swollen, with my right tonsil being twice the size of my left. They did not hurt at all, in fact, I didn't even realize they were swollen until I went to the doctors for a persistent cold. The doctor was very surprised at their size, especially the fact that the right side was a lot bigger and immediately started asking me questions relating to cancer symptoms like whether or not I was having night sweats or losing weight. While I didn't have any cancer symptoms, I did feel extremely fatigued most days and I did have the risk factor of having had mononucleosis two years ago. I was pretty paranoid at this point because my GP gave me an urgent referral to an ENT specialist through the NHS. The hospital contacted me telling me that I would need to wait two entire months to even see an ENT. Because I am a study abroad student from the US, I had private travel insurance so I took advantage of that and found a private ENT specialist on my own. 

After the ENT especialist examined me, he said that there is a small chance it could be lymphoma but it's more likely to be chronic tonsillitis. He told me that there is no way to know for sure unless I got a tonsillectomy to have my tonsils out and biopsied. 

As I waited to get my tonsillectomy, I was growing increasingly anxious and could barely sleep. I was constantly googling my symptoms and started feeling around my lymph nodes to see if any were swollen. I actually started feeling a hard lump on the right side of my neck and I genuinely started to think that there was no way that I didn't have lymphoma. I was coming up with all these theories in my head about how because I have lymphoma that spread to my tonsils, that's why I was having such a persistent cold that won't go away. 

Eventually, I finally got my tonsils (and adenoids) taken out and the recovery was quite literally the most painful experience. However, it didn't last forever and I pulled through. If you're about to get a tonsillectomy for whatever reason, I don't want to scare you but definitely be prepared and take your pain meds. During the recovery, I did bleed several times which was really scary but it didn't end up being anything too serious. I'm now more than two weeks into my recovery and my throat is pretty much back to normal. I got my biopsy results a few days ago and they definitively diagnosed my condition as chronic tonsillitis. I did also have several doctors check out the lump I felt on my neck and all of them have said that it's nothing to worry about. I'm still a bit worried but in a few weeks when I go back for another check up, I'll ask my doctor to check on the lump again. 

All in all, even though this has been a really exhausting and tough experience, I will say that getting my tonsils removed was definitely worth it. I understand how some of you who have similar experiences might be feeling right now but really trust me, it's way more likely than not that it is not cancer. If it does end up being cancer, know that it is not the end of the world and you CAN put up a fight and win. I have had several close family members and friends who have dealt with cancer, they all survived, even some that had later stage cancer. Again, as I said before, everyone is different so please go visit your doctor. 

Feel free to ask me any questions regarding my experience if I haven't covered something. 

Sending all the best wishes to everyone! You are strong and will get through whatever it is you're dealing with! 

Alice

  • Hi 

    just wondering if anyone has been through or is currently going through this, I have about 4 enlarged lymph nodes in my neck that I know of , from what I can feel the one on the left side of my neck Beneath my ear is around 2cm firm but not rock hard and not moveable , I have 2 pea sized moveable ones and one grape size moveable one . I have had them that I know of around about 2 years with no change is size, I went to the doctors a couple of months ago and she said it was because of my acne (which I have had untreated for 5 years) so she changed my pill and that has really cleared up my acne but the lymph nodes still persist with no change? I am going back to the doctors tomorrow as they are worrying and if you couldn't already tell I have severe health anxiety , is it true that lymph nodes can just stay permanently enlarged after infection ps. I have had no weight loss, night sweats or anything just a little tiredness as I have been iron deficient , overalls feel fine apart from this anxiety taking over my life

    I would really appreciate and comments thank you xx

  • I personally think that if they haven't changed in size and you don't have cancer symptoms, you should reasonably be fine. I know that lymph nodes can stay enlarged after an infection but I'm not sure about permanently. It's probably good that you're going back to the doctors though to be safe! I also have health anxiety, totally get it. 

    Hope all goes well! 

    Alice 

  • Hello Alice, I found your experience very helpful. I got the all clear from non hodgkins lymphoma but after a pet scan there is activity in my tonsil. I have an appointment in 2 weeks to have them out. Christmas seems to get in the way. It is a very anxious time and you start to think the worst and all that horrid treatment again.I don't have a sore throat just a bit of cold. You have given me hope and strength.xx

  • Hi Alice,

    I am going through the same thing right now but it is my left tonsil I will be having a tonsillectomy very soon and it's honestly horrible being in the unknown. I just want to know how you kept yourself going without freaking out ? I'm in the middle of my deadlines in my final year of university and I'm struggling to keep myself motivated and not worry about it. I would also appricitae any tips for the recovery after having your tonsils removed I've seen my friend go through it and it was a very awful experience for her so I'm a little scared and want to know what was helping you ease the pain. Thank you for sharing your experience it means a lot. Zuzanna 

  • Hi Zuzanna, 

    I'm so sorry to hear that you are going through a tough time right now. I'm happy that you reached out. 

    It was pretty difficult for me as someone who is a bit of a hypochondriac to keep calm but I think the biggest thing you can do is to avoid Googling as much as possible. I know it can be difficult because all you want is reassurance but trust me when I decided to stop googling around, I started to feel a bit better because it allowed me to focus on staying as healthy as possible at that moment. You are already doing great by having gone to the doctors and scheduling a tonsillectomy. I'm proud of you for that. 

    It's funny that you mention your uni deadlines because when I was getting my tonsillectomy, it was also during my first term deadlines, I actually spend a fair amount of time in the hospital bed typing away at my essays haha. If you haven't already, I highly recommend contacting your uni and making sure they know your circumstances. Before my surgery, I applied to have mitigating circumstances which allowed me to get longer extensions for my work.

    In terms of the pain, I'm not going to sugar coat it, it hurt a lot for me. However, it may be different because I actually ended up receiving my surgery in China (my home country) where the restrictions on painkillers are stricter so I didn't get as much prescribed to me. In the UK, they probably will give you stronger painkillers than they gave me in China. The first five days are the worst but after that, it should slowly start to get better. Don't make the same mistake I did and eat ice cream that is frozen too hard because I think it may have dislodged part of my scab and made me bleed which prolonged my recovery. Make sure to really take the soft liquid diet seriously and not test it at all until you are recovered. 

    Beyond easing the physical pain through painkillers and taking proper care of your wound, make sure to try your best to stay in a positive mindset. That's going to be easier said than done but have things around that's going to help you take your mind off of things is important, be it your favorite show or a person that you enjoy. 

    I hope this was helpful. The surgery will be a challenging experience but it won't be anything that you can't conquer. Afterward, you will feel like a stronger person and your anxieties will be eased. If at any point, you still feel anxious and need to talk, feel free to post here again. I will definitely respond because I just graduated and have no life anyway haha. 

    I wish all the best to you! Remember that you are strong! Keep me posted! 

    Alice

  • Hi! 

    It means so much to me to hear you say that! I'm also so happy that you got an all clear, CONGRATS! I hope your surgery went well and that you're all recovered now. 

    Alice

  • Thanks for sharing your experience - I'm in the same boat right now I have a tonsil that is larger than the other and have lost quite a bit of weight (but I also had a little boy 18 months ago and it's been quite intense)

     

    The ENT has referred me for a tonsillectomy and panendoscopy and I'm finding it really difficult right now to have to wait. It's been scheduled a while ago now and it's due to take place in a 9 days! 

     

    I'm really scared of the surgery and recovery and keep thinking maybe a biopsy could be done instead as it would be less painful. I am due to speak to the surgeon tuesday and planning to ask him

     

    I'm also really scared to be given bad news - for now he did not mention anything about lymphoma he is trying to rule out tonsil cancer. It is a trying time for sure so it's nice to hear it was all clear for you. I'm hoping for the same outcome although really dreading the tonsillectomy especially in the midst of covid

  • Hello,

    I am in remission with Non Hodgkin  Lymphoma and have an enlarged large tonsil.

     

    How did yours turn out?

  • Hi, 

    I know this is a while after, but im due to have my tonsils out due to one being bigger than the other. I have no other symptoms but he did say thwre is a chance of lymphoma, which has paniked me so much. I have never had tonsillitis..not that i can remember anyway so i dont tjink it wpuld be chronic tonsillits. O suffer with anxiety so bad, im so scared for the op and then waiting for the reaults. I have a constant lump feeling in my throat. 

    Thanks.

  • Hi 

    I know it has been a while but was wondering how you got on with your tonsils and if you got the all clear? I am waiting to hear from ENT myself but not sure on how long I will have to wait. 
     

    kind regards