Lymphoma diagnosis - the story so far

Hello All - I'm new here please bare with me as I explain what's been happening

29 year old, physically active non drinking, non smoking male.

a couple of months ago I woke up to find a very sudden but large lump in my gum, on the bottom row of my teeth, which very rapidly over the course of a few days got larger to the point where my entire cheek was swollen and I could barely open my mouth

an emergency trip to the dentist ended up being very worrying, as they were very concerned that one of my lymph nodes under my chin was also raised, and as my teeth were feeling fine they were really not sure what this issue was. I was referred to the hospital to see a maxillofacial surgeon on a 2 week referral

Once with the hospital I very quickly received a head & neck CT, blood tests, MRI scans and a biopsy of the lump in my gum, and the surgeon reassured me that there were '1001 things it could be' and they had to wait for the biopsy to find out

Unfortunately last week I was called into the office with my father and given the news that I had infect developed a cancer called a lymphoma in my neck, which had materialised in my mouth very quickly. Truly devastating news 

I cannot fault the NHS, since that meeting I have had countless scans, tests and meetings with my specialist, leader of the MDT meetings for cancer in my area. I'm currently waiting on a PET scan tomorrow, to find out the type, extent, severity of this lymphoma as the doctors have said it's hard to have a definitive answer until the PET scan

to say im Extremely worried is an understatement. My specialist has said that this kind of cancer is 'emminently treatable' and 'in most cases curable', but this is all depending on the results of the PET scan, and at what stage my particular form of cancer is at

if anyone has any lymphoma stories, or any advice on how I can possibly navigate this utter nightmare, I'd be pleased to speak to you

  • Welcome to Cancer Chat MrUnlucky91 although I'm sorry to hear you have been diagnosed with Lymphoma.

    I know this must be rather scary and possibly a tad overwhelming at the moment but I'm glad you've joined us as our community will understand what you're going through and hopefully you will receive some support and advice from them soon.

    I hope this section we have on coping with cancer and Lymphoma will prove useful but if you feel it may help to talk things through with one of our cancer nurses then do be sure to give them a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very supportive and will do all they can to help you at this time.

    I will have my fingers crossed it doesn't take too long for your PET scan results to come through and you can start taking your first steps towards treating your cancer.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi my 23 year old son has just finished his treatment for stage 2 hodgkin's lymphoma and his latest pet ct scan has shown he is now in remission and will have regular check ups to make sure it doesn't come back. The treatment for lymphoma is generally very successful so that's really positive. Good luck with everything and hopefully you will get a good diagnosis xx

  • Hi Jingle I'm so pleased to hear about your son that must be such a relief.

    to be honest having to sit in a room with my father and watch him react to me having cancer was far harder for me than my own reaction.. so I'm really pleased your son and yourself have had some positive news

    im waiting on my PET scan results any day now, then my specialist will talk me through the plan to move forward. To say I'm terrified is an understatement.

     

    best of luck to your son moving forward and congratulations to him

  • Hi 

     

    Thank-you for your kind words. I know exactly how your dad must be feeling it is so hard to deal with. 

     

    I hope your scan results are as good as they can be and that you will soon have a treatment plan in place. I won't pretend it's been easy for myself or my son but we got each other through it as best as we could and you will come out the other side a different person but myself and my son have become closer and more appreciative of everything. 

     

    Take it one day at a time and best of luck with everything. If you have any questions or just want to chat just get in touch. 

     

    Take care and hugs to you and your family 

     

  • Hi Jingle I just thought I'd pop on here with an update - I've actually been diagnosed with a rare type of NHL called Burkitt Lymphoma. Very rare however my consultant seems convinced just as treatable and hopefully curable.

    i had my first round of R-CHOP chemotherapy yesterday, and it's quite remarkable but the tumour in my mouth, along with the swollen lymph node in my neck, have almost completely vanished - almost.

    I was told if that were to happen not to get too ahead of myself as far as results - but I'd like to think that's a positive sign

     

    i hope you and your son are both well

  • Hi

     

    Pleased to hear that you have a firm diagnosis and have already started treatment hope the chemotherapy will be kind to you. Good to hear that your prognosis is very positive. 

    Hopefully in a few months time you too will be receiving the good news that my son did. Please let me know how everything goes. 

    Wishing you and you family the best Christmas possible in the circumstances and most importantly a happy healthy 2022.

    Best wishes 

     

    Alison 

  • Hi - I'm a Burkitts Lymphoma survivor (5 years now) and went through the R-CODOX M treatment which was intense to say the least.  Very similar to you, I had a fast growing tumor in my throat and I had surgery to remove it before going through treatment.

    I hope you are doing well and recovering.