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 Scones, I was wondering how your treatment for lymphoma is doing? I have red patches all over my skin and have done for around 3 years and now this has progressed to a swollen lymph node and itchy scalp. 
     

    So I am fairly certain I have the same thing (tests are currently being done now). 

  • Hi, all my appointments have been cancelled because of Covid, I'm still on watch and wait but more wait than watch. I've not had any B symptoms this time which is good. I have an appointment in October but waiting for that to be cancelled. It will have been nearly a year since I've seen my haematologist so I'm a tad concerned. I hope eventually I get a Ct scan as you can't always feel the lymph nodes as mine were at side of my lungs and kidneys. I still have the small lump in my neck but I don't think it has got bigger. It does concern me as I've lost a friend during Covid who had an agressive form of lymphoma and I just keep thinking he might still be here if it wasn't for this pandemic. Wish you all the best with your tests. Take care x

  • Scones, thank you for the reply. I hope you find out sooner than later. Do you mind me asking how old you are as I am 23 and am concerned about my age? 
     

    Thank you and will update when I have results back. 

  • Hi, I was 64 when first diagnosed, it seemed to be common in my age group. Most of the people I see at the hospital were all in the older bracket as well. Fingers crossed for you that it is ok and you get a good outcome. You have age on your side.

  • Thank you very much extremely helpful !

  • Hey scones If you don't mind be asking did the itching of the scalp start mild and become worse and if so how long did it take to become so intense that it bleed I have mild scalp itching and a swollen lymph node and I'm concerned just wondering what your experience was xx hope you are doing well I'm 17 xx

  • Hi sorry to butt in! I found when I had this that the itching got worse over time. I'd advise you to see your doctor and ask for a referral to the haematology department just to be on the safe side! I wish I had taken these early symptoms more seriously than I did. I'm sure you are fine but it's definitely best to

    check xx

  • When the scalp itching started was it constant or was it on and of in random patches and also when it started mild how mild was it just a itch you could ignore xx

  • Hi, I don't Think I really noticed it till I became conscious that I was scratching a lot, especially my head, it did worry me, I tried loads of different shampoos but nothing worked, it did get worse over time, but it magically disappeared after a couple of chemo treatments and I've not had it again. Not everyone gets this and there are probably loads of other things that can cause itching. My own GP dismissed my complaints of losing weight, itching, feeling fatiqued, it was only when the lump appeared on my neck did she do something.