I was diagnosed with lymphoma around a month ago,and I had a biopsy and pet scan. I had the results of the sub type yesterday by phone, I have a low grade marginal zone lymphoma, with quite a large area on my thigh, and much smaller areas in my stomach,chest and collar bone, my thigh is going to be treated with radiotherapy and the other areas are going to be “watch and wait” I have an appointment next Wednesday with the haematologist to discuss the results, I feel strangely calmer now I have a diagnosis, my mind has stopped wandering to the worst case scenario.although I do feel a bit apprehensive about watch and wait, does anyone have any advice
Hi @Lesley1 and a huge welcome to the forum.
It really does make a
difference once you have that diagnosis. Like you, I like to know what I’m dealing with.
I have follicular lymphoma, treated with radiotherapy 7 years ago and active monitoring since then.
Now, if I’m honest, I hated active monitoring. I didn’t know how to handle it and was on constant high alert, even though I knew this was the best course of treatment, and I do now see it as a treatment.
It has got easier as time as gone on and I think about it less. However, there are days when I have low days and my biggest bit of advice is that it’s ok to have bad days. We don’t have to be positive all of the time!
I could ramble on and on but I’m sure there will be many others who will share there experiences.
Make sure to write down any questions you have at any point. That’s what your medical team are there for. Please keep us updated
on how you are doing and remember, the support line is there is you need it X
Here is a link to info on active monitoring
Hi @Lesley1 welcome to our forum and now you are not alone with your diagnosis.
A lot has happened to you in a short space of time, I would say just take your time to come to terms with your diagnosis…
@Nichola75 has given you a great response which I cannot better.
Originally I could not get my head round why I was not immediately treated, made better and we would all go back to normal, neither could my work.
Watch and wait or active monitoring is a weird concept, I have been on it for 19 yrs.
I still get anxious before and during tests, results and appointments.
I think that is natural, so I just go with it.
Please do let us know how you get on next Wednesday and you rightly use the word ‘discuss’, appointments are a 2 way process. Be pleasantly assertive and ensure you get the answers you need.
Really look after and be very kind to yourself.
Hi, thank you both for your replies, and very useful information, ( I’m not sure how to tag you) it really has all happened in a whirlwind, I think I’m still trying to wrap my head and emotions around it, it’s quite difficult for me to understand the watch and wait, the link on active monitoring will certainly help, I’ll update you once I’ve seen the haematologist on Wednesday
It’s still such early days. I remember my emotions being all over the place and so much was going through my mind. Just be kind to yourself.
Yes, please update us after your appointment on Wednesday X
If ever you want to tag anybody type @ and our names should appear x
@Nichola75, Thanks Nichola, I can really relate to that my emotions are all over the place, it’s such a lot of news to take in.and this forum has helped massively, although I do feel better for knowing the sub type, hopefully on Wednesday I’ll be given a treatment schedule
Be thinking of you tomorrow @Lesley1 X
@Nichola75 thanks, I’ll let you know how I get on
I had my appointment with my haematologist this morning, she really put my mind at rest, i don’t think I realised just how stressed I was, I’m going to be having radiotherapy on my thigh everyday for 10 days, then watch and wait with a check up every 3 months, I’ve got my new patient radiology appointment next Thursday to discuss when treatment will start
I am so glad that your haematologist really put your mind at rest @Lesley1, I never realise how stressed I was until I feel relieved either.
I also like to know the way forward too.
Please do let us know how you get on next Thursday.
Perhaps really look after yourself now.
@Erica , thanks for your support, yes it’s amazing how much stress we are under without realising it. I feel so much better after speaking with her today. I also like to know the way forward as it gives me something to focus on, now to see what the radiologist says next week
I also have a maggie centre near me, so I popped in there after the hospital and they are really amazing
@Lesley1 I have heard good things about Maggie Centres too.
Yes they are amazing and so supportive, you can just pop in and chat to them, they are very calming or you can just sit in there quietly if you prefer, I will certainly use it lots
I’m glad your appointment went well and your mind has been put at rest.
Take care of yourself during radiotherapy. It’s exhausting going to the hospital every day so plan some treats X
Thanks @Nichola75 that’s very useful to know it’s exhausting, I’ll plan plenty if treats and rest time
Hi @Lesley1 . As @Erica and @Nichola75 have already said at first active monitoring can seem a little scary. Like whoa hold on a moment you have just told me I have lymphoma but you are not doing anything! Especially like you I was seen regularly at the hospital for treatment so when you are then left alone it can feel very scary. BUT believe me there is no better place to be than in active monitoring, there is no waiting around for a referral, no waiting around for an initial diagnosis. You will be seen every 3 months and that is very reassuring. I was seen even during the pandemic.
In the weeks in between if you have any concerns it’s easy to pick up the phone and have direct access to your team. That would not be possible in any other medical situation. You would have to go to your GP and wait to be referred which would take weeks. I have made many calls in my six years of active monitoring and been seen within days.
I have only just yesterday been put back into active monitoring after a period of treatment having asked my team to seem me in November last year , in that time I’ve had more scans than hot dinners and two lymph nodes removed , but all through active monitoring.
Do keep us informed how you are feeling and warm welcome to the forum and to the world of active monitoring.
@Jules thank you so much, everything you said makes perfect sense, it is quite daunting knowing I have this and I’m not receiving treatment, I’m telling myself active monitoring is a good place to be but it’s taking some getting used too, i’m so pleased you have been put back on active monitoring, look after yourself