Hi all,
I'm sure, like everyone, I still can't quite believe I'm finding myself here. I'm in the middle of a sea of unexpected tests.
God where do I start? 2 years ago I was referred to haematology for mildly low (0.6) lymphocytes (found after some routine bloods to rule out psoriatic arthritis). They've done 6 monthly bloods, other than low b12 and static lymphocytes nil has come of it.
I've had some bloating and saw gp unsure if it was food related or gynae (really bad period pain for 20+ years). Had pelvic ultrasound and ca125. Clear scan but raised ca125 (65), thus referred to gynae (rejected as a 2ww) and ca125 repeated by haematology which came back at 55.
Finally saw gynae out of area and he gave me the options of exploratory op, just diagnose endometriosis on symptoms or do a ct to be on the safe side. I chose the ct.
Shock!!! Results came back, everything OK but multiple lesions on spleen and 2 very small, inconclusive nodules on liver.
They discussed me in the mdt and think its likely lymphoma. So I've had a completion ct scan, mri liver and spleen and yesterday I had a spleen biopsy.
I am freaking out, I have a 12 year old who has lost his grandad and step dad in the last year. I'm so scared of leaving him.
I keep going to worst case scenario and can't find anyone who's even had a spleen biopsy.
Sorry I'm waffling so much, its just been such a shock after such a tough 2 years.
Hi WhatFreshHell and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your ongoing diagnosis.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.
The first thing you need to understand that although Lymphoma is the 5th most common cancer in the UK it is very very treatable with great results........ I turned 68 last week and I am 24 years out from my first diagnosis and I am living a great life.
Until you know 'exactly' what 'type' you have do keep chatting on this thread as if you go into the groups you may find that you are in the wrong place......... Lymphomas are often treated differently so no one size fits all when it comes to Lymphoma.
I have had many biopsies and a spleen biopsy is just one of the many that are done....... Biopsies are an important part of the Diagnosis of Lymphoma as it's the main way to find the exact type of Lymphoma.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type so one you know exactly what type of Lymphoma this is you can join one of the groups below:
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
((hugs))
