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

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

Thanks again for he Reply Rufus.

Im getting my ultrasound next Tuesday so at least it is some progress. 

Could you tell me what happened with your ultrasounds which provided no diagnosis? (Just in case I find myself in the same situation) did they just tell you it was inconclusive and to wait and see or? Sorry to ask so many questions but I’m desperately nervous and lucky to have contact someone who has been through this already.  

Hey,

unfortunately I can’t remember the exact wording used by the GP, but she read out a report to me over the phone (after I phoned and chased for the results) provided to her by the specialist following the first ultrasound, which happened in July. It said that nothing of concern was raised.  At the second ultrasound in Nov they only looked at the glands in my neck but by that stage I’d had an NHS chest X-ray which showed up swelling of other glands in my diaphragm (again another classic symptom). I was told my case would be referred to a MDT meeting a week later. However by that time I was under private care and only attended the appointment to ‘stay in the system’. Simultaneously to this, the private specialist had already put me in for a CT scan and organised the biopsy, he seemed to know immediately  upon physical examination that the chances of Lymphoma were pretty high.  The out come the first NHS ultrasound prompted my GP to do more bloods to rule out other conditions such as Glandular Fever, HIV and Sarcoidosis all of which were negative. In hindsight and knowing what I know now about Lymphoma, I actually had all the classic symptoms (multiple lumps, right age demographic, no other symptoms, no other conditions) so a biopsy was a proportionate next step for NHS in July and def in Nov, but it wasn’t done. My specialist told me it can be a very difficult cancer to diagnose and some people need multiple biopsies to identify it. Some of my glands which were originally inflamed went down over time by themselves, so it would be easy to presume it was an Infection but I now know those symptoms are consistent with early stages, I.e there can be some fluctuation and movement in the early cancer cells.......hope this is of some help and not overwhelming/daunting?!

Everyone’s journey is unique to them so there is nothing to say that what’s happened to me will repeat itself. The lesson I’ve learnt is that you definitely need to persevere with lumps and bumps until you get a definite diagnosis not a ‘could be’ or ‘might be’.

Everything crossed for you! X

Thanks again Rufus, I really do appreciate you taking the time to respond to me so thoroughly.

ive been told by the Haemotology department who referred me for the scan that following the scan I will receive a letter outlining a report of everything I’ve had done so far. This would be the blood test I had (I think this included tests for HIV etc as well as a fbc) the chest X-ray and the ultrasound once it is done. I’ve been harassing the haematology department almost every other week since my intial app to ask questions about my blood, chest X-ray etc and they haven’t seen anything untoward in either but the Dr did say they had nothing to compare my chest X-ray to.. whatever that means.. I called them again today asking for a copy of my blood tests because a couple have people said I have looked pale at work so I started freaking out about anemia/bone metastasis only to be told I would be aswell wait till after the scan or I have to pay patient liaison for a copy of everything. However the paleness may actually be bags under my eyes considering I’ve only had about 5 hours sleep each night if I’m lucky since the start of December between stressing myself out and looking after a new born. 

I guess il just have to wait and see what comes of Tuesday. If it’s inconclusive I think Il go private for peace of mind.. my family have been kidding that even if I get good news I won’t beleive it judging by how concerned I’ve been the last couple of months and if I wind up getting a private consultation I know they will definitely say that but i can’t take any chances. 

When does your treatment start? 

Thanks again Rufus, I really do appreciate you taking the time to respond to me so thoroughly.

ive been told by the Haemotology department who referred me for the scan that following the scan I will receive a letter outlining a report of everything I’ve had done so far. This would be the blood test I had (I think this included tests for HIV etc as well as a fbc) the chest X-ray and the ultrasound once it is done. I’ve been harassing the haematology department almost every other week since my intial app to ask questions about my blood, chest X-ray etc and they haven’t seen anything untoward in either but the Dr did say they had nothing to compare my chest X-ray to.. whatever that means.. I called them again today asking for a copy of my blood tests because a couple have people said I have looked pale at work so I started freaking out about anemia/bone metastasis only to be told I would be aswell wait till after the scan or I have to pay patient liaison for a copy of everything. However the paleness may actually be bags under my eyes considering I’ve only had about 5 hours sleep each night if I’m lucky since the start of December between stressing myself out and looking after a new born. 

I guess il just have to wait and see what comes of Tuesday. If it’s inconclusive I think Il go private for peace of mind.. my family have been kidding that even if I get good news I won’t beleive it judging by how concerned I’ve been the last couple of months and if I wind up getting a private consultation I know they will definitely say that but i can’t take any chances. 

When does your treatment start? 

Had my ultrasound and it’s been determined my lump is a Lipoma and not a lymph node.

To say I’m relieved is an understatement!

i do also feel a little silly for getting so worried and worked up that I took time of work due to stress but when you hear you’re being tested to rule out cancer is pretty tough.

guess I’ve learned a few lessons here.