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
  • Hi, sorry to hear all you have been going through. I had stage 3b NHL, finished my chemo in November. Strangely enough I had also been to my doctors about losing weight, fatigue and a terrible itch on my scalp. It was awful scratching all the time, I had my husband checking my scalp but he cudnt see anything. Doctor said my scalp was dry, probably because I was scratching it all the time. She prescribed a coconut oil shampoo which didn’t help, also my bloods were normal. A lump appeared on my neck weeks later and she sent me to an Ent consultant. Many tests later I have a rare form of lymphoma. It’s very strange about the itching as I mentioned this to my consultant and she said it was unusual, the minute I started chemo, the itch went away. Maybe the scalp itch was unusual but I will be watching out for this in the future. I wish you well with your treatment. X

  • Hi, I know this post is months old and not sure you'll see the reply, just curious about the scalp itch you experienced. I've had a very intense itch on my scalp since the beginning of August, worse at night as has had me awake, so bad it's bled where I've been scratching it. A pharmacist suggested an anti fungal cream, but that did nothing and said try my GP if it persisted. I didn't until a couple of weeks ago as it was driving me insane and felt like it was never going to stop! It feels like it's burning sensation sometimes. I also noticed a hard lump on my neck, so mentioned that at the GP appointment thinking he'd say it was nothing to worry about but he wants to refer to ultrasound if lump is still there at a follow up appointment on 30th.. he prescribed a steroid shampoo for a scalp but it's not helped.. so now my mind is in overdrive and concern about lymphoma! How bad was your itchy scalp and did you ever scratch it so much it bled etc? Hopefully I'll get some answers for my situation at some point in the not too distant future but for now just researching all I can!

    I hope you are both well,

    Thanks for reading x

  • 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.

  • Hi I am 17 ans was recently diagnosed with iron deficiency anaemia , low b12 , low folate and low vitamin d and I'm terrified it's a sign of cancer going unnoticed. I have been on supplements for almost 4 months for all things listed but 2 weeks ago I went through about 7 days of feeling nauseas and not wanting to really eat but my appetite is back to normal now and have also developed a dark patch on my stomach kind of in a cluster but the doctor wouldn't look at it when I went in because I thought I had swollen nodes . She tested me for glandular fever and something else which I am still yet to know I am just so worried it's cancer and they aren't taking me seriously 

Reply
  • Hi I am 17 ans was recently diagnosed with iron deficiency anaemia , low b12 , low folate and low vitamin d and I'm terrified it's a sign of cancer going unnoticed. I have been on supplements for almost 4 months for all things listed but 2 weeks ago I went through about 7 days of feeling nauseas and not wanting to really eat but my appetite is back to normal now and have also developed a dark patch on my stomach kind of in a cluster but the doctor wouldn't look at it when I went in because I thought I had swollen nodes . She tested me for glandular fever and something else which I am still yet to know I am just so worried it's cancer and they aren't taking me seriously 

Children
  • Hi, it's a worrying time but you have to have faith in your doctors. They are experienced in diagnosing these illnesses. Your symptoms don't relate to lymphoma, maybe once you give your supplements time to work, you will feel ok again. All I can say if you still feel the same in a few months, go back to your doctors and let them know how you are feeling. Take care xx