Recently diagnosed with follicular lymphoma

Recent diagnosis
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Hello this is my first post in the forum. I’ve been reading in the background for a couple of months.

In November I was referred for biopsies due to swollen lymph nodes.

My lymphocytes have been above high reference since 2021. I have monthly bloods due to medication for another health condition.

I was told in January that i have stage 1 possibly 2 follicular lymphoma.
My first MacMillan appointment i was told it was low grade. I wasn’t overly confident in the doctor i saw, he had to call me back into the room after my appointment because he forgot to ask me about symptoms.
I had filled in the symptom leaflet from BCUK and handed it to him but he didn’t read it and handed it back to me.

I’ve since had an MRI on a suspected tumour of the nerve sheath in my arm and a CT scan from head to pelvis and i am awaiting the results of these which I assume i will receive at my next appointment on 12th March.

I have had a lot of trauma for the last three years and so when I was diagnosed it didn’t really have any effect as i am still numb from previous trauma.

Once i received a letter for my first MacMillan appointment it hit me hard that I have cancer and although they have said its low grade I’m worrying that they are wrong because I have all of the symptoms and I’m chronically fatigued.

I have spoken to my CNS and she told me to see my GP to get help for the itching and dry raised scaley patches appearing. I now have swollen ear canals that are weeping, my hearing has been affected, the sweats are beyond ridiculous and my body hurts, I’m breathless and chronically fatigued.

I’ve been prescribed antibiotics, antibiotic cream, antibiotic ear spray, a preventative inhaler and I’m also taking a biologic injection for rheumatoid arthritis and antidepressants for PTSD.

I feel so overwhelmed by everything going on and just needed to let it all out somewhere.

I have huge support from my husband but live a long way from other family and I don’t want to lean on him too hard as he has his own cancer journey going on too.

I’m just concerned about the diagnosis being accurate more than anything.

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Oh @Dolly I am so glad firstly that you have found us and secondly had the courage to post.
It really comes over what a really challenging few years you have had in so many ways.
We are here for you to just say how it is for you when you feel so overwhelmed.
I am not a medical but if your fears and questions are not answered soon and they are all hospital related you could contact the hospital PALS (Patient Advice and Liasion Service) for assistance.
You might consider asking for a 2nd opinion or, if it were possible financially, looking for a private 2nd opinion yourself.
Please do let us know how you get on

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@Erica thank you for responding.

My problem is that I don’t like making a fuss and then stress myself out because I haven’t spoken out about my concerns.

Im seeing a different doctor to the one i had at the last appointment so I’m hopeful they will be more engaging and listen to my concerns.

I’m trying not to worry about the results of the scans but it’s not easy. If i don’t feel any differently after my next appointment i think I will be requesting a second opinion.

My GP has already let me down by marking my questionable blood results as normal and no further action for three years. Had it not been for the swollen lymph nodes I don’t think I would have been diagnosed at all.

I’m relieved i have somewhere i can come for support without having to involve my family or friends. Thank you

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Well I’m none the wiser.

They said its in all of my lymph nodes but hasn’t spread to any organs. They gave me information on rituximab but said I can also go on watch and wait.

It’s clear as mud and I have no idea what to do.

My next appointment is in June. The haematologist seemed to think my symptoms were not connected.

I have

Unexplained bruising.
Swollen nodes
Drenching night sweats.
Itchy skin.
Bone, joint and abdominal pain.
Chronic fatigue.
Breathlessness.
A persistent cough without production.

I also have rheumatoid arthritis, osteoporosis, osteogenesis imperfecta, and EDS. I worry I’m not being taken seriously.

I’m at a loss as to what to do.

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Hi @Dolly have you got a nurse specialist that you can talk to about you not knowing what to do and your worry about feelings that you were not being taken seriously.
You have shown that you have a complex medical history and perhaps it might mean going back to your GP with your symptoms and tell them what your haematologist has said and ask if they might be attributed to something else.
Look after yourself and please do keep posting.