Hi! I am new here and i apologise if I shouldn’t be here yet. I am awaiting a biopsy to confirm if I have lymphoma or not. I know the only definitive way of knowing is a biopsy but I cannot stop going over everything in my mind wondering if it will be cancerous or not. I’m wondering if anyone has any similar stories to mine.
My maternal grandmother had rheumatoid arthritis. Two years ago, I noticed that anytime I had been drinking alcohol I would be horribly hungover the next day and terrible pain. So much so that I just avoided going out with friends drinking or would have to plan for a good few days recovery. One time, I noticed that my wrist joints had big ball lumps on them. Had no idea what they were. Google had me thinking ganglion cyst ( looked similar ). I went to the gp to explain I was having some pain and swelling and stiffness in my joints and was worried about early onset rheumatoid arthritis (knowing my gran had passed away at only 57 from RA). Bloods were taken and these were my results -
Extractable nuclear antigen level Negative for many auto immune.
Ro, La, Sm, RNP-70, JO-1 and SCL-70
However, ANTI-NUCLEAR ABS
Anti-nuclear factor level was Positive nucleoli pattern
I was referred to a rheumatologist. An ultrasound was done on my hands and the imaging came back fine and just to have pain management. For the next two years I thought I was having “flare ups” anytime I felt really run down and in pain. I then started losing weight really fast without trying and sweating excessively especially night sweats. In the last couple of weeks I’ve noticed palpitations and came to hospital with tachycardia. Whilst connecting dots I’ve realised I have had persistent swollen inguinal lymph nodes for years, and a follicular/keratosis looking spotty rash on my bum/legs for years also.
I am now in hospital having lost over a stone in weight in under 10 weeks, having terrible night sweats and excessively sweating throughout the day, I had a low grade fever and palpitations every time I move around. Pressure on my chest constantly and a painful feeling behind my bone. So many tests were done for “infectious diseases” nothing coming back. Had a full body ct scan which came back clear just some enlarged lymph nodes. I am now waiting to have a lymph node biopsy (hopefully on Monday) & I am pretty sure lymphoma is a big possible outcome. I don’t know if i am trying to hard to connect the dots or it could all make sense that it has been lymphoma all along. I am a mum to 3 young boys and for the last 5 months I have had no energy whatsoever. I just want to finally know what has been wrong with my body but am absolutely terrified of what might be yet to come. Has anyone ever had anything similar? I have drove myself crazy on Google when I know I just have to wait for the biopsy. It is just so hard having to wait and wonder. :(
Hi Ccxox93cbb7 and warm welcome to the Macmillan 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 (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
There are over 60 types and sub-types of Lymphoma so Diagnosis of Lymphoma can take time with the 2 main tools being biopsy and scan.
The symptoms you are having do indeed point towards Lymphoma…… but also other health conditions.
Back in 1999 I had no symptoms apart from a developing rash on my back…… it still took a full year, 6 biopsies and a few CTs to eventually get a clear diagnosis,
Should you be diagnosed with Lymphoma you can join one of our Lymphoma support groups.
General Non Hodgkin's Lymphoma
These groups will be safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Until you get that diagnosis do stick around on this post and I will help you out further.
Lymphoma is a very unusual type of cancer, often found accidentally due to someone being investigated for something else, others can have lots of symptoms and yet it takes time to join the dots.
But there is also a group of people who, as you say, get all the tests done and get no clear answers…… let’s look first clear answers for you.
Should you be diagnosed with one of the 60 types of Lymphoma, compared to most other cancers Lymphoma is very treatable with encouraging results.
Due to me having to be treated for my 2 very rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am doing great…. 10 years out from my last treatment, I turn 70 in a few weeks and am living a great life.
