Hi,

I’m in similar situation. My neck glands came up in June I went to the GP got referred under the 2 week process to ENT they did an ultrasound and downgraded the referral back to GP care. By August they were still up so went to the GP for bloods, they tested for HIV, Glandular fever all clear! Had one slightly raised protein which they did a second check on but it went down so again was left. By Oct glands were still up and I could feel my auxiliary (armpit) gland was up now. So back to GP, they did a chest x Ray this time which confirmed some glands on my chest were up. At this point I went private, they did a ct scan last week which is listed as abnormal as all glands are up, I went back to the ENT in the mean time they did an ultrasound and confirmed my gut feeling, which is that the glands I originally went to the doctor for in June, had gone down, my GP said that was inconsistent with cancer, which I’m clinging on to However as the ct was abnormal I have a biopsy on Thursday. I have not experienced any type b symptoms such as night sweats, weight loss etc. I play netball every week and do a weekly HIT training session, yet here I am. It’s terrifying and a constant mental battle whichfor me ranges from me visualising  my funeral to visualising getting the all clear. From other things I have read on here I think glands diseases etc are difficult to diagnose. My advice is to stay on top of your GP/specialists and ask them to rule out as much as possible as quickly as possible. Have you experienced any other symptoms? It is a very difficult experience so also make sure you have some good people around you to support you if possible xxx

Thanks for your reply. The quickness of everything has nearly terrified me more but so glad they have taken me seriously. 

Ive had tiredness but im a community carer so very active job plus early morning and 2 wee young kids so hard to know what would be normal. Slight weight loss but as im slender already i loose weight extremly easily- slightest big of stress or worry. No night sweats.

I hate this unknown ita driving me insane i feel like its taking over everything. I too keep thinking that im juat going to be diagnosed and not be able to get cured. Its horrendous and trying to keep a brave face. 

I hope you get some answers soon. The not knowing is the worst. I dont think unless your in this situation ypu can understand that fear 

Xx

Hi, I’ve just finished my treatment for grade 3 lymphoma. My story started like yours, the FNA biopsy will confirm if you have lymphoma and what kind you have. This unfortunately took three weeks for my results to come in. The waiting is the worst bit. After that I had to have a ct scan, this tells them what grade of cancer you have, again this took a few weeks for results to get back to consultant. I also had a bone marrow biopsy but not everyone has this. When all results are in the consultant has a multi disciplinary meeting with other cancer doctors and they all decide what the best treatment would be. A lot of people with low grade lymphoma don’t get treatment straight away and go on watch and wait. I was told I am in remission and pleased to say treatment wasn’t too bad. I just followed doctors orders and took all the medication they gave me. I have another ct scan next week and I’m hoping it’s still gone. I was told my lymphoma is not curable but treatable which shocks you when you hear that but I’m hoping it stays away for a while. Only time will tell. I also had practically every B symptom in the book but never even gave lymphoma a thought as I have auto immune problems and thought it was that. I wish you well with your biopsy which isn’t too bad, I had two taken from my neck then another 13 taken from under my arm, I think they were worried that it was aggressive but turned out it wasn’t. Let us know how you get on. 

Thanks for your reply

Since your treatment had your lymph nodes went away or down any? I hope you stay in your remission period aa long time. I have been reading up about low grade and alot of people can spend years in remission. 

Im very nervous about everything amd wprry to the point i feel unwell. I know i shouldnt as what will be will be whether i worry or not x

Hi, when I first went to my gp, after she examined me told me she was referring me to ENT and told me to still go even if it went down. I think she had a good idea it was abnormal then. When I went for my biopsy it was really large but went back down a bit a week later. When I started my treatment it started to get smaller. I had enlarged lymph nodes under my arm and the biggest concern was at side of my lungs. After my third treatment and ct scan most of them had went. Honestly I am the biggest wimp out and even told my husband I cudnt go through with chemo. My doctor was really nice and supportive and by the time I started my treatment I was up for it. The drugs they give you are so much better than years ago, I had minor problems but every time I saw the doctors or nurses they fixed them. If the anti sickness doesn’t work they want to know as they don’t want you being sick and they will give you a stronger one. Try not to worry, if I can do it anyone can. If I can be of any more help through this journey please get in touch. You May be lucky, but even if you are not, stay positive, take support from friends and family, I honestly think they feel worse than you. Take care x

hello,

im currently waiting for my biopsy results to come back, I’m being tested for lymphoma. Just wondering what sort of treatment you had and how long for? Wishing you all the best xx

How did your biopsy go? My appointment is for next Monday im so anxious about it.

Hope your keeping well xx

Hi, I had 6 treatments of RCVP, it usually took about roughly 4 hours, they put the retuximab in very slowly at first as that’s usually the one you can have a reaction with but they give you paracetamol, steroids, anti sickness and I had the antihistamine intravenously before the infusion starts. The retuximab takes hours to go in, when that’s finished they put the rest of the chemo drugs in. It’s honestly not too bad, nurses are wonderful and help you every step of the wAy. My next worry is my ct scan on Wednesday, just hope it’s ok. The waiting is honestly the worst bit of this journey. I hope all your biopsies are the correct result for you, fingers crossed x

how did your ct scan go? I get my biopsy results tomorrow xx