Lymphoma tests

Hi I was wondering if anything who has been diagnosed with lymphoma or had tests to check could offer some advice.

For around 4/5 months I have been wakening up in the night drenched in sweat whether my room is cold or warm. I have enlarged lymph nodes I can feel hard lumps on my voice box and around my neck, behind ears, armpit and possibly groin and tummy area. My white blood cell count was a little on the low side, I am exhausted beyond belief my throat is very dry and a tickly cough. I’ve lost over half a stone in a short period of time and I have really sore achy muscles/bones mainly in neck/shoulders/back.

My doctor prescribed antibiotics incase of infection and stated if they never worked could be possibly lymphoma. All symptoms stuck around after antibiotic and I was scheduled for an x-ray at ENT. The consultant asked me my symptoms and had a feel only around my neck she sent me for an X-ray on only my neck also. Came back lymph nodes in neck appeared “healthy”. To go back under care of GP and recommends another blood test to check cell count.

My worry is that maybe the X-ray on just my neck wasn’t enough to confirm as it could possibly be in another area? I’m just extremely worried due to my symptoms I also have a 9 month old baby and I would hate to think anything may have been missed.

Any opinions, advice or experiences would be greatly appreciated.

Many thanks 

  • I have just had my first Chemo treatment for stage 2 Non hodgkins Lymphoma and to reach the treatment stage you need to know what type of lymphoma you have, 

    My journey went like this

    I noticed a lump in my groin and went to doctors who within two weeks had a ultrasound and biopsy which detected cancer cells. I then had another byopsy which was sent to Leeds to find out exactly the best treatment.

    In two weeks had a Ct scan and a further week a pet scan

    These showed up where the cancer cells are and within another week I have had r chop treatment that was on the 13th Dec 2019 

    Hope this helps

  • Hi there how big or small was the lump in your groin if you don't mind me asking? 

     

     

  • Dont mind you asking at all it grew to L40mm W30 and shaped liked an egg wasnt sore and didnt ache plus they found another small lump on the PET scan. 

  • I’m sorry to hear of your diagnosis I hope things are going as well as possible and your feeling ok.

    thank you for sharing your journey so far. Did you have any other symptoms other than the lump in your groin? 

    I’m quite worried as I had no biopsy and only an X-ray on my neck when I have swollen lymph nodes in other parts of my body. I think I may need to go back to the doc and express my concern. 

  • I understand your worry but your health is important so I would definately go back and explain you think it may be lymphoma and should you be having any specific tests and Im sure they will give you the correct advice. 

    I had no other symptoms but the cancer was in another part of me near the original lympnode which only showed up after the scans....but there are around 60 different lymphomas and before any treatment they need to be sure they do the correct test etc.

    Try to get in with another doctor to be sure they have 100% looked at all your symtoms. My opinion from experience only I think you needed a CET scan and later a PET scan.

    Its hard not to worry and take each day as it comes book to see a doctor

    I didnt want to research to much as its depressing without the full facts im sure a oncologist at the hospital should give the best  advice not a GP. 

    Hope this helps

  • Thank you very much for the advice, I shall speak to my GP and ask to be referred to oncology rather than ENt this time. I think I’m more worried because the mentioned lymphoma to me would’ve been the last thing I thought of.

    60? Wow I can see why it can take so long to get all the facts together to provide best treatment. I really sincerely hope your treatment goes well and wish you all the best. Have a nice Christmas also, you’ve got this!  

  • At least you have a plan of action take each day as it comes and also it may not be lymphoma and I wish you all the best Im fairly sure I will be okay, after 1st chemo lump as gone down a lot. 

    Thanks for best wishes and have a good Christmas yourself

  • I do hope all went well with your visit back to doctor 

  • Hi, I hope you are doing well. May I ask, what kind of biopsy did you have? Did you have a whole node removed? 

  • Hi John They took a sample of the lump and sent it to Leeds for testing and to find out what treatment was best. Hope this helps you.