Hi everyone. I feel like I know you all already as I think I have stalked every single post in the last 72 hours. I was told 3 days ago I have low grade follicular lymphoma. The news was a complete shock to me as I had a biopsy for a possible soft tissue sarcoma. So at the moment I am under the wrong department but they are moving me over to Hematology . The nurse who told me their findings said I will be expecting a PET scan once I’m with Hematology. I am literally going out of my mind. It’s been the longest 3 days of my life. I don’t have any of the symptoms they asked me about… night sweats, weight loss etc. but I do seem to be having noticeable joint pain. Is this linked or this me now being irrational and picking at anything that isn’t my normal? this has only been found as I have a 3cm lump in my thigh which had an ultrasound then mri and then biopsy and now I’m here . As I haven’t been staged yet is there anything anyone can tell me? I hope some of this makes some sense and I’m not just rambling on x
Hi @Rainbow1 and a big welcome to the forum.
I was diagnosed with follicular lymphoma 8 years ago and like you, had no noticeable symptoms apart from a lump on my cheekbone. It came as a complete shock.
I know you must be very worried and the waiting is so difficult isn’t it. Everything seems to take forever which gives you time to think more, google more and worry that any pain of discomfort is related.
It’s hard to comment on individual symptoms as each journey can be very different. What I would say is use this time to write down any questions you have ready for your appointment. This will be helpful for you when you go.
The helpline is amazing if you want to talk things through.
How to contact Blood Cancer UK | Blood Cancer UK.
This website, Lymphoma Action and the Follicular Lymphoma Foundation have all the information you need if you want to find out more.
Like I said. It’s such a difficult time waiting for results and appointments and we all understand how difficult it is, I drove myself crazy but was helped so much by the forum as I felt less alone.
Please keep posting. There will be lots of us who can share experiences and support you through this.
Lots of love
Nichola X
Hi @Rainbow1 a great big welcome, I can feel your thoughts and emotions going all over the place, perhaps that also has your shock mixed in.
You are certainly not rambling on, but if you feel like a ramble you have come to the right place. You are now part of our forum family.
I was diagnosed with another blood cancer, but I remember feeling very like you, you are making perfect sense..
@Nichola75 has given you a great reply and it is that waiting and not knowing which is the worst.
Please do let us know how you get on and really look after and be kind to yourself
Hi @Rainbow1
I am sorry you’re having to go through this difficult time. I was diagnosed with stage 2 low burden follicular lymphoma and have been on active monitoring since September.
I found it extremely difficult waiting for appointments and results and anxiety also made it worse. The information @Nichola75 and @Erica has given you is great advice, be kind to yourself and thinking of you.
Hi I can imagine how incredibly overwhelming and scary these past few days must have been for you. It’s completely understandable to feel like you’re spiralling and scrutinising every little ache and pain when you’ve just received such unexpected news.
I’m a forum volunteer, and I also have follicular lymphoma, so I genuinely understand a lot of what you’re going through right now. Mine was found incidentally, and I remember that initial shock very clearly.
It’s absolutely natural to start noticing every little thing in your body after a diagnosis like this I get a pain in my big toe and I think uh oh !!!. It’s impossible for anyone here to say definitively if it’s linked to your lymphoma or not. What I can tell you is that it’s really important to mention this to your new haematology team. They will take a full medical history and consider all your symptoms, no matter how minor they might seem to you now. They are the best people to assess if your joint pain is relevant to your diagnosis or something else entirely. Its good that they’ve made the correct diagnosis and are moving you to the haematology team, who are the specialists in lymphomas. This is a positive step forward, even though the wait feels agonising.
You mentioned you haven’t been staged yet, and that’s precisely what the PET scan is for. The PET scan, along with any other tests your haematology team will order, will help them determine if there is lymphoma anywhere else in your body.
When I was diagnosed, my lymphoma was quite extensive, and I went through chemotherapy and immunotherapy back in 2018. It was a tough road, but I’ve been in active monitoring for the last few years, and I’m doing well. This is something important to remember: follicular lymphoma is often a very treatable and manageable cancer. It’s often described as an “indolent” or slow-growing lymphoma, meaning it can progress slowly over many years.
I know it feels incredibly scary right now, but please try to hold onto a few things:
- You’re in the process of getting to the right specialists. The move to Haematology is a good sign that things are progressing.
- A PET scan is a standard and very effective tool for staging follicular lymphoma. It will give your doctors the information they need
- There are so many different and new treatments available now for follicular lymphoma. Even if treatment is needed, options are constantly improving. Many people with follicular lymphoma live long, full lives, often with periods of active monitoring before any treatment is needed.
The waiting game is truly one of the hardest parts. Lean on your support system if you have one. Talk to friends, family, or even consider joining a support group once you’re ready – sometimes just hearing from others who have walked this path can be incredibly reassuring.
Hang in there. You’re taking the first steps on this journey, and while it’s scary, you’re not alone. Please keep communicating with your medical team about all your symptoms and concerns. Sending you so much strength for the days ahead.