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 

Parents
  • Reading this is like reading my own life story these last 3+ years. I have experienced everything that you have. The itching, the hot and cold flushes, the disturbed sleep. Also the numerous lotions potions and creams. I tried homeopathic remedies and vitamin pills. Nothing works! I see three 'specialists' and had three separate diagnoses. Eczema, allergy and neurological. I had yet another appointment but couldn't go due to covid restrictions. When the hospital finally rang me to re-arrange my rash had gone so I cancelled but it came back worse that ever about 3 or four weeks ago. I just can't take it any more. I am lying awake now at 2.30 in the morning scratching my arms until they bleed. 

  • I can totally remember the pain and discomfort you're feeling at the moment and I can't believe how long it's been going on for! My advice would be to ask for a blood test as it can detect your white blood crlk

    count and inflammation markers (both of mine were very high). From this they would hopefully strange scans if something doesn't look right in the blood test results. Failing that, I would ask your gp for an urgent referral to heomotology. This is what I did and I was seen my the heomotologist within a couple of weeks. Sorry to hear you are going through this 

  • Hi Helen Ann I am worried I have had a swallon lymph node under my jaw for 2 and a half months now I have been to several doctors and they aren't concerned but recently I have a new one in the side of my neck on my muscle, I have had night sweats but I am on anti depressants the doctor is saying it's caused by them I also have some itching that comes and goes over my body and pins and needles only had it for 2 days, I'm going for an appointment with the doctor for a private session so hopefully will push for a scan, My bloods were normal when last taken but I've heard that even with normal results you can still have lymphoma is that true

  • Hi, really sorry to hear you're experiencing these symptoms and naturally it's normal to worry. I cannot express how much you should push this with your gp, it's absolutely disgusting how many people they say nothing is wrong because they don't know enough about the symptoms to look out for or we're 'too young for cancer'. It's good that you are having a private gp to discuss, hopefully they will run some scans. I just remember demanding to have scans and a referral to haematology. I'm sure you are fine but you definitely need to be sure. I have no idea about the bloods to be honest, mine came back with high inflammation markers and high white blood cells when I had it, but mine was stage 4 in the end so that might be why. Let me know if yku ever want to chat about anything, I hope your appointments go ok x

  • Helen Ann even though my bloods are coming back fine and my ultrasound came back normal I'm still feeling itchy and still convinced it's lymphoma 

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