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

Thanks scones i just cant wait to get this biopsy done and dusted. The thought of it terrifies me but I'll just have to get on with it lol 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

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

Hope your keeping well xx

Hi,

How did your biopsy go? Mine was unbelievably quick and painless. Results tomorrow so no sleep for me tonight xx

Mine is on Monday so will be a lomg weekend!!

Glad it went well good luck with results keep us updated xx

Good luck for your results, try your best to enjoy the weekend x

hey, 

so so I got my results and unfortunately I have grade 1, classic modular Hodgkin’s disease (ie Lymphoma). I’ve waited 6 months for an outcome and had to go private to get one but at least now I know. I need a PET scan and chemo starts after Christmas. The specialist was very positive and optimistic and states that is curable so I’m putting all my faith in that. Difficult times ahead but I’m made of strong stuff! Hope you get a more positive outcome than I have. Xx

Sorry to hear bout your results, can I ask if you are going private for your treatment? My first appointment with my haematologist told me if it was grade one it would probably be radiotherapy but because mine was grade three I had to have chemo. Your ct scan usually tells them them the grade of cancer. Grade one is good, means it’s only in one place.  I wish you well, it’s really not too bad, let us know how you get on. 

Hi Rufus, sorry to hear about your diagnosis but great to see you’re keeping a positive attitude. 

Can you tell me what exactly you had done privately? 

I have an ongoing investigation with Haemotology (I have a swollen lymph node in groin and have had some night sweats)  but I feel like it’s progressing so slowly. Haemotologist told me

my lump feels more like a cyst so I guess that means I will be even less of a priority. I would be willing to get some tests done privately if it speeds things up a bit because I’m about loosing my mind waiting for an appointment to get an ultrasound and worry that after that I may need to wait and wait for further investigations depending how that goes. 

Hi,

I had an initial consultation,CT scan and Biopsy, I was diagnosed within 3 weeks. 5 months in and NHS hadn’t even referred me to a Haematologist or thought about a biopsy. If private is an option for you I wouldn’t hesitate- wish I had done it sooner!

hi,

yes im having the treatment privately, ABVD chemo. It’s stage 2A, so classed as early. So will have 2-4 cycles and a PET scan. 

Thanks for getting back to me and best of luck with everything that’s to come. 

If you don’t mind me asking, how big were your lumps?

the one in my groin is about 2cm x 1cm, it doesn’t seem to have grown much since I first noticed it, maybe a title thicker but that’s about it. I don’t seem to have any other palpable nodes but who knows what is underneath. 

My GP referred me to Haemotology when I went back a second time, after being told to watch it for a few weeks and if it hadn’t gone down to get back to him. At the time I was so busy fixing up my house and preparing for a baby coming I almost completely forgot about it untill my partner pointed it out again in Late September. I had bloods taken which were “satisfactory” then an inspection by the Haemotologist said he was convinced it was nothing to worry about and most likely a cyst. I was still referred for an ultrasound which I should get by the end of January.. the waiting certainly is tough.. like you I find myself worrying about all matter of scenarios. 

I totally understand your worry!

My lumps in my neck were 1-2cm. I was informed by my GP and Specialist that the only way to rule Lymphoma out, is by having a biopsy so don’t be afraid to push for one if you’re concerned. Hopefully it is just a cyst and you can forget all about it. I had two ultrasounds via the NHS one in July and one in October neither provided a diagnosis unfortunately. I also had 3 batches of ‘normal’ blood tests before diagnosis. I’m being really honest about my journey because I want to help others avoid what I went through, which was 6 months of back and forth, stress etc. I had and still have no type b symptoms so it can be lurking without anything really evident going on apart from lumps X