Stage 3 Hodgkin’s lymphoma

it all started around July time. I started to experience extreme itching with no rash on my chest neck and arms. I went to the doctor and was told it was eczema even though my skin was clearly not dry. I went back again and was prescribed a different cream. Went back again and was prescribe antihistamines. Went back again and was prescribed steroid tablets. Went back again and was prescribed antidepressants. Went back again and was prescribed more steroids and more antihistamines. At this point the itching was all I’ve and unbearable to the point I could no longer wear a bra of long sleeves and it was just so so itchy. I couldn’t go out or go to uni. Work was absolute hell. But I didn’t feel I could take time off because I was itchy? Eventually, at the end of December just before Christmas my doctor arranged a blood test. The results came back that my white blood cell count was extremely high as well as  as my inflammation levels. He arranged a non urgent CT scan. In the time I was waiting for the scan I started to experience night sweats and also shivers (one extreme to the other). I ended up going to hospital at the beginning of January this year as I was in complete agony in my neck and my armpit and 5 lymph nodes had swollen up. The hospital adviced I go back to my GP and arrange and urgent referral to the haematologist (blood cancer specialist) which scared us. This was done. When I saw him he said I looked very helpful and he could only feel one lymph node (the others had gone down). He explained he wasn’t worried and it could be glandular fever but to have a CT scan and ultra sound. I had my scans and a few days after the severe pain returned. My dad called the hospital and spoke to a cancer nurse, she reassured him that when the lymph nodes are hurting it is very unlikely that it is cancer and more likely to be an infection so this made us feel better. The haematologist received my scan results and said a lot of my lymph nodes were swollen internally so arranged a biopsy. I had this and two weeks later went for my results. They weighed me and I had gained a stone! A massive symptom of lymphoma is weight loss so this made me feel better. I went into the doctors room with my parents and he said he Is very shocked at my results because even now I still look really well. He explained that I definitely have stage 3 Hodgkin’s lymphoma but I am having a PET scan tomorrow in case it is stage 4. Then we can discuss treatment. I think people need to be made aware of these symptoms especially itching and do not hesitate to push your doctor into running tests. At the end of the day doctors are only human and they clearly aren’t as aware on symptoms of uncommon cancers a maybe they should be. I am not blaming them because I am extremely grateful for all they have done to help and the care some of them have shown. However I know that if my skin had been examined and itching taken more seriously from the start, my lymphoma may not be advanced and that is the thing that is upsetting me the most 

  • Hi, sorry to hear you're feeling like this, completely normal to worry! I know when I had my bloods taken the thing that worried them was the high white blood cell count and high inflammation levels. I think that they really should take you seriously, you have itching and swollen lymph nodes which are symptoms of lymphoma. However, it could be something completely different so please try not to worry! My doctor gave me a list of things that could have caused the itching and I was prescribed all sorts! You should definitely see your doctor again though to be on the safe side, and even mention lymphoma! As it didn't cross any of their minds until my Mum Mentioned it!

    Hope you're ok!

  • This is true, I was prescribed b12 to help with the itching as they thought thats what it was!

  • Did you get your results I found a lump on neck only small around 10 weeks ago around same time I experienced really itchy skin iv been to my gp 3 times last time they did blood tests and had markers come up for inflammation and said to have bloods done again in 4 weeks and a scan I'm 33 weeks pregnant so there not really taking me seriously but my symptoms am giving me anxiety about Hodkins lymphoma I'm trying to take doctors advise and wait for bloods to be re done and wait till after iv had baby for a scan but I'm so worried having young children scares me thinking there is something seriously wrong with me the doctors put the lump to infection but iv not been ill and they advised it can take 3 weeks for the lump to go but iv had it 10 weeks for what I know of and I believe the itchy skin and inflammation is all linked to this lump in my neck I'm hoping to phone again tomorrow and see if theres further tests they can do as longer iv left it worse I feel with neck pain and now in the back of my neck spreading towards my shoulder blades and reading some of these comments with same symptoms is making me believe maybe I have cancer it's just the doctors ain't really taking me serious due to my age and being pregnant 

  • Hi Hi I found a small lump on my neck around 10 weeks ago and also at same time have experienced really itchy skin iv been to my gp 3 times last time they did blood tests and had markers come up for inflammation and said to have bloods done again in 4 weeks and a scan I'm 33 weeks pregnant so there not really taking me seriously but my symptoms am giving me anxiety about Hodkins lymphoma I'm trying to take doctors advise and wait for bloods to be re done and wait till after iv had baby for a scan but I'm so worried having young children scares me thinking there is something seriously wrong with me the doctors put the lump to infection but iv not been ill and they advised it can take 3 weeks for the lump to go but iv had it 10 weeks for what I know of and I believe the itchy skin and inflammation is all linked to this lump in my neck I'm hoping to phone again tomorrow and see if theres further tests they can do as longer iv left it worse I feel with neck pain and now in the back of my neck spreading towards my shoulder blades and reading some of these comments with same symptoms is making me believe maybe I have cancer it's just the doctors ain't really taking me serious due to my age and being pregnant 

  • Itchy skin in pregnancy can be a symptom of something dangerous and pregnancy related. My sister had it and had to be induced early. Talk to a midwife x 

  • So sorry to hear this I hope you are doing well. I've got raised lymph nodes in my neck and groin. Ina. Totally unrelated episode I had to go to the hospital and it showed my inflammatory markers are raised and my white blood count is 13.8. I don't know what counts as high but I aren't unwell. It doesn't seem drastically high however they've never been raised before. These lumps I've had for a while now. What where you blood results like? 

  • Hi, thank you I'm absolutely fine now! You've done the right thing going to the doctors. In terms of my bloods, I don't know what the figures were but my doctor told me my white blood cell count and inflammation markers were high and that's what pushed them to send me for further tests. If I were you keep pushing them for a referral to haematology because it's better to be safe and rule it out! Hope this helps x

  • Hi, I know this post is old so I'm unsure if you'll respond. 
     

    im so sorry you had to go back and to and sorry what the outcome was! I'm really worried at the moment, I do suffer with health anxiety which doesn't help. I thought the back of my neck on the right side felt more swelled than the other and I keep itching a lot, especially at night! I don't have any other symptoms. But being anxious I googled‍♀️! I did have a full blood count in December would something have shown off on those? I noticed you said your white blood cells were high,  All it shown was a b12 deficiency. I am just really worried it's something to be concerned about! 
     

    I hope your okay also! 

  • Hello I am also 20 

    mans I'm suffering bad health anxiety, 

    I noticed a week ago that one of my glands has flared up you can't see it only when you press down on the neck under the right jaw line you can feel it, I also have a sore throat on one side and my tonsil is slightly and I mean tiny bit bigger than the other I was wondering what symptoms you have or where they the same I don't mean to come across rude just want to know as I'm so scared I'm gonna die young :( 

     

    thank you for reading

  • I would just contact your GP to be on the safe side and say you would really like a blood test. I've been back to my doctors recently as some of my symptoms had returned slightly and they've arranged a blood test as they can detect a lot of abnormalities!