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 All, I'm sorry to see how many people are suffering with these symptoms. I got diagnosed with Hodgkins in August 2016 after 8 months of itching and several diagnoses from eczema to allergies to depression. It was only when a lump was found that I was sent for blood tests. I had 6 months of chemo and the itching stopped after the first session.

    This experience has left me extremely anxious about the hodgkins returning. I am currently 36 weeks pregnant and also have started itching in the last 3 weeks. All over same as before. I'm so panicked I don't know how to cope. The doctors have said my bloods are normal except low iron (this can also cause itching) i cant find any new lumps but as many of you sadly know they can be internal also. 

    I don't know if anyone will respond due to the age of this post but wondered if anyone has had similar. Am I over reacting? Apparently it can be hormones which cause itching in pregnancy, I've been tested for other things but came back negative. I'm struggling to get hold of my consultant and my gp said there is no way of knowing until the baby is born.

    I'm very scared its returned, and am 33 years old. 

    I hope you are all doing ok and managing in these strange times. Xx

  • Hi, I finished my treatment for lymphoma in December 2018, the scan showed I was all clear. Unfortunately 4 weeks later I felt a small pea sized lump in my neck again, biopsy showed it had returned. X-ray also showed small nodes at side of my lungs. I was so disappointed and worried. Nearly two years on I am still on watch and wait, they seemingly won't do treatment till I start having B symptoms like the last time. My weight is stable or actually gone up during lockdown. I guess this is a good sign. It could be your pregnancy making you itch again. It was my scalp that was itchy and like you disappeared after one chemo. Try not to worry, just check all the usual places for lumps to put you at ease. I get my neck, under arms and groin area checked when I go the see my consultant although it's been a year since I've seen her due to covid. I get a call every 6 months now. Just be vigilant. Take care xx

  • Following this post as I'm also scared I have cancer if you don't mind me asking what was Your white cells like when they done bloods ? How high were they I am honestly so terrified as I have a young baby at home 

  • Hi, sorry I don't know what my white cells were, they went straight to the biopsy when my consultant felt the lump. I was getting bloods done the first time round every month and no one picked up that the white blood cells were high so I don't think the blood test showed anything wrong. I've been under a rheumatologist for years getting loads of bloods tested and nothing ever seems to show in my bloods apart from a kidney prob, strangely enough my doctor checking me again for same problem, more bloods getting done tomorrow. The miracle was after one round of chemo my levels went back to normal as my haematologist was looking out for that. never had any problems with my bloods during chemo either. Do you have any other symptoms of lymphoma?

  • I posted on here last night about my situation I will attach what I posted let me know if there's any resemblemces 

     

    Hey my names Emily I'm 23 I had a baby 7 months ago ( baby number 2) pregnancy number 4. I have always had very big boobs and my bmi is high, recently I noticed my boobs were a lot lower and my nipple was lower to. I keep getting this itchy feeling on the top of boobs which has been driving mad intense itching I'm so terrified I have cancer I have no pain or lumps just breast tissue is non existent like no fullness whatsoever very loose skin

    what is a typical white blood cell reading in early stages of cancer ? And do they typically keep getting higher? Also my inflammatory test came back slightly elevated but nothing to crazy 

  • Sorry I can't answer you as my bloods never showed anything wrong. If you are worried, you should see your doctor. Cancer has a lot of other symptoms, my doctor didn't take my itching seriously so maybe it's not a big symptom. Lumps seem to be the main symptom. Take care 

  • Hi scones I hope you're well :)

    im in the same boat myself. Have an abnormal lymph node on ultrasound and itching etc and having fine needle biopsy done. Does a fine needle biopsy detect lymphoma? Did you have this? Thank you 

  • Hi, yes the biopsy tells them what kind of lymphoma you have, after that a ct scan will be done if it's positive and tells them what stage it's at. The biopsy also tells them if it slow growing or aggressive. I hope this helps. I also had a bone marrow biopsy as well. 

  • Thank you so much for getting back to me :) 

    My consultant told me the fine needle biopsy can find cancer spread to lymph nodes but isn't great for detecting lymphoma and he may need to surgically remove the lymph node.. I'm assuming you didn't have any lymph nodes removed? Just confused whether to go ahead with removing my lymph node if I don't get any result from the fna or would I be best getting a CT scan done first? Thanks so much 

  • Hi, I'm not a doctor but just relaying my experience to you. It was the ENT doctor that called me to say the biopsy showed I had nodal marginal zone lymphoma and I didn't need surgery. Maybe if the biopsy didn't show anything and they were still worried it being sinister they might remove it, I'm not sure. I know they did another biopsy on another lump which was under my arm, this was to check if it was aggressive or not. Mine was indolent. I then had a bone marrow biopsy. This was all before my ct scan which showed what stage I was at. All these tests took the best part of 3 months before they decided I needed chemo. It was agony waiting all this time but I guess they have to make sure what they are dealing with and to make sure the right treatment is given.