Hi all
I recently had a diagnosis of follicular lymphoma… i am petrified absolutely devastated. Is anyone else on watch and wait what does this mean ?
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Hello there @mumma.bear, welcome to the forum. I’m glad you found us.
While I’m diagnosed with Polycythaemia vera (PV), a different blood cancer to follicular lymphoma, I recognise and empathise with your feelings of devastation. It’s gutting getting a diagnosis like these, isn’t it?!
There are others here who live with the same diagnosis as you and I’m sure they’ll be able to offer more specific tips and advice, but for now here’s the Blood Cancer UK information about follicular lymphoma. Maybe try not to randomly google your diagnosis as there’s a lot of out-of-date nonsense online, so stick to official blood cancer sources for information.
Watch and wait is also known as active monitoring and is usually a good sign that your doctors are keeping an eye on your blood disorder but that no further treatment is necessary just yet. There are folks on here with diagnoses from decades ago who have been on wait and watch that whole time with minimal medical intervention, if that helps.
I’d say for now your feelings are of course totally valid and perhaps, if it feels safe to do so, let yourself feel all the feelings. I felt like I was grieving after my diagnosis, and so angry about it, but have since grown to tolerate it thanks to loved ones and the support of folks on this forum. If you have loved ones with whom you can share how you’re feeling that might help right now. Maybe they can attend appointments with you to help keep notes?
You might find certain questions come up about your diagnosis, and what it could mean for you, so make note of them and ask away on here. Take your queries to your doctors too as they’ll get a better sense of how you’re dealing with it all and they can adjust accordingly.
You’re not alone with this @mumma.bear and I hope you come to feel supported here with your diagnosis and its aftermath.
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It’s always scary when you are first diagnosed. It’s entirely normal to be put on watch and wait - or active monitoring as it’s also called (so blood tests every 3 to 6 months to see if your condition remains stable). Some people are on watch and wait for many years. Lymphoma is very different to solid cancers like breast cancer and the doctors tend avoid active treatment (eg radiotherapy or chemo/immunotherapy) for as long as possible , until the lymphoma starts to produce challenging symptoms or affect organs . This is when the benefits of treatment outweigh the downsides of it. (I have a different type of slow growing lymphoma, I needed treatment back in 2020 but now in remission and back on active monitoring).
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I cannot better @Duncan and @CaroleCW’s replies apart from saying that I have another blood cancer and I have been a very lucky girl and been on watch and wait for 20 yrs.
I haver answered your other post and reiterate just give yourself time to get your head round things and be ever so kind to yourself.
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Some people with blood cancer don’t need treatment straight away – and some never need it. If you don’t need treatment, right away you are often you are monitored with regular check-ups and blood tests. This may this called “active monitoring” or “watch and wait.
There is lots of information available from the @BloodCancerUK-SupportTeam or on the website
I have had treatment and I am now back on active monitoring, I also have FL. It can feel a little scary at first and takes a little getting used to. But actually it’s a great situation to be in no treatment but regular checkups. No waiting around for referrals you have a team at the end of the phone and when anything is a worry they are there for you - quickly and efficiently.
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Hi @mumma.bear.
I am on active monitoring for follicular lymphoma and have been on active monitoring for 6 years.
It’s a very frightening thing isn’t it. Getting a diagnosis but no treatment.
I can honestly say that it has got easier as time has gone on. I’m not saying it ever goes away but I think about it less.
I had counselling and found this support group, both of which helped and still help so much.
I hope you feel less alone X
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Thank you so much for you’re reply,
im sorry to hear you have this as well , i cant get my head around it , just leaving it waiting for it to get worse. I just want it out , i didn’t realise the wait could be that long i thought thats it in 3/4 years. I will be really bad get 1 shot at chemo then thats it … ive had 1 appointment which I received my diagnosis and nothing since, hence being left with my thoughts… im sorry if this dosnt make sense i have so much going round my head and no one to talk to … thank you for you’re time and advice i really appreciate it X
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Hi Duncan
Thank you so much for you’re reply, wow that was like a weight lifted, when being given my diagnosis i herd the doctor say maybe in 3 /4 /5 years i might need treatment i thought that means thats how long i have left !!
The nurse answered a phone call which completely took my attention i dont remember much else he said … you actually made me laugh saying try not to randomly Google my diagnosis, as thats what i have been doing in the middle of the night when my children aren’t around , so thanks for that … i think im coming to terms with it a bit and feel so much better knowing people can be on watch and wait for so long i had no idea…
Thank you so much for you’re kind words and support. X
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You’re most welcome, @mumma.bear.
I really feel for you. It can really seem like we’re being left to our own devices after diagnosis, but you’d be called in if any treatments were needed now. When you have questions and concerns it may seem more like inactive monitoring, but from what others here on the forum say about their experiences of watch and wait it can be the best worst case scenario, if you know what I mean. Rather watch and wait than unnecessary treatments, right?
Something that helps me during stressful appointments is taking notes of what is said. It’s understandably difficult to take it all in though, like you said, so maybe you have a loved one to help take notes at these times and attend appointments with you? My diagnosis was a bit of a blur but the notes I took helped afterwards, and my other half was there too and confirmed what I’d written down.
It’s also really helpful to keep notes in between appointments of how you’re doing, what questions come up, your worries, what you need clarifying… Then when you have appointments you’ll have a bunch of stuff to talk about with your specialists. Keeping these sorts of notes can help show you your own progress in tolerating what you’re living with. Looking back over the notes I’ve kept shows how I was super angry at first at being diagnosed with Polycythaemia vera (PV) and worried about treatments (for me it’s daily chemotherapy and regular phlebotomy), but now I’ve become sort of resigned to living with blood cancer.
Something that helps me personally is speaking to the nurses I see fairly regularly as they are also experts in our care. I’ve been able to learn so much about my blood cancer from showing interest in my nurse’s work and asking them about the procedures they’re so well-trained to help us through. Like you, I’ve only seen my haematologist once, so for me it’s my lovely nurses who keep me going. I actually look forward to seeing them when I need to go into hospital! Never would have imagined that!
To help you avoid Dr Google nonsense, here are a couple of other cancer organisations that have great clinically researched information; Macmillan and LLS.org.
Keep us posted about how you get on, @mumma.bear. You’re part of the forum family now!
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Being left with your own thoughts can be so hard. It’s those quiet times and when I’m trying to sleep when my thoughts run wild.
I will share the link for counselling that I had through MacMillan, just in case you want to talk things through.
Please take good care of yourself and keep posting. We are all here for you X
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Hello ive just been diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL and im on watch and wait still waiting on results of pet scan and bone marrow not had any symptoms and basicaly after that i will have appointments to monitor my condition every four months if i do get any symptoms in-between i can contact my nurse.
Havent see immunity yet end of month had a lot of colds and flu.
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Hi @Riddler63 a great big welcome to our forum, I am so glad that you have found us.
How are you coming to terms with your diagnosis?
It sounds as if you have a good support with your medical team and do contact your nurse if you need to.
Also the blood Cancer UK support team is there for you on 0808 2080 888.
There is a lot of information on the Blood Cancer UK website.
We are also here for you and other people on here are on watch and wait (or active monitoring) on here although we might have other blood cancers.
You have entered a world that speaks another medical language.
Please do keep posting and I find it is a lot quicker to get run down than to build myself back up, especially at this time of year…
Look after yourself and I look forward to hearing more about so please do keep posting
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Hello erica
Im 60 years old and my biggest love is running.If it wasnt for running i may not have known i had blood cancer at this time.
The races i run are ultra marathons and i run anywhere from 50 miles to 100 miles.
Last year though i would get terrible stomach aches during the races.
Went to my doctor who sent me for blood tests and we discovered i had a poor immune system.
I was referred to haematology who sent me for a ct scan my consultant was sure we would not find anything.
Unfortunately they found some lyphmnodes under my arms but very small insize.
So i had a biopsy and that was when i was diagnosed with hodgkin lymphoma NLPHL.
i believe is rare as it is very slow growing.
So at the moment ive been put on watch and wait and will be screened every four months.
I feel like a fake when i tell people as im in good health although i have suffered from flu and colds.
At the moment i cant stop thinking about it ive struggled sleeping its hard to get it out of my head.
I work for the COOP they have been amazing putting my mind at rest financially and making adjustments to my work.
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Thanks for your response @Riddler63 telling us all about yourself.
Wow, those are some some ultra marathons.
I was diagnosed at 53 years old and I could not explain to others, especially work, what I did not understand myself.
My logic said that if I had leukaemia I would be treated and cured, little did I know how wrong I was and it certainly isn’t a logical condition.
Yes, I felt a fraud especially when I read some stories on our forum.
It did take me a long time to get my head round it and I could not stop thinking about it and the ‘what if’s’ etc.
I think it was worse at night because my thoughts and feelings could go into overdrive as it had other diversions like work and life during the day. They always say that the darkest hour is just before dawn.
Be kind to yourself, give yourself time, everything you say sounds very natural to me.
Please do keep posting how you are.
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