Hi all,
I’m Claire, I’m 36 and have there young children. I’ve been developing increasingly worrying symptoms which started around 5 months ago and are now daily. I’m having nightly drenching night sweats, I get chills, fatigue, I have 6 swollen lymph nodes in my groin (3 on either side) I also have a swollen lymph node in my neck and a breast lump/swollen lymph node. Additionally, I’ve experienced breathlessness for some time.
Ive had various tests done by my GP for routine bloods, they ruled out infection and anaemia etc, thyroid is fine, not menopausal but convinced myself I was… for months! I’ve had a clear chest X-ray in February although my ECG still shows I have partial RBBB (not a problem) I have had recurrent urine infections and antibiotics, including a 3 month dose to try and shift a possible grumbling infection. Was also given citalopram for ‘anxiety’ related breathlessness… still, all of my symptoms remain.
Long story short - I have various red flag symptoms, I lost weight but I seem to be gaining some now. I’ve been referred under the 2ww to the breast clinic and had some additional bloods taken but awaiting further results. This is not the first time I have had a concerning breast lump, scans came back okay but this doesn’t feel like a breast lump - it’s not painful, it feels like a rather large lymph node. The nodes in my groin as increasingly growing, again not painful.
I have been concerned that I was sent down the wrong pathway but looking at the guidance where I live, they have referred me to the breast clinic who will review me and take the appropriate steps. I have had three doctors now tell me this could be lymphoma but my routine bloods are reassuring - apparently!
I am exhausted and I am terrified. I have a gut feeling that this is going to be diagnosed as a high grade lymphoma and have spent weeks worrying and trying to identify ANYTHING other than lymphoma that are causing all of these symptoms. I can’t find anything to reassure me and wonder if anyone else had the same experience and it turned out to be a false alarm?
How did you eventually get a confirmed diagnosis?
Lots of love
Claire X
Hi Claire CCG2025 and a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups.
For some context 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.
Your story is unfortunately rather normal….. the majority of GPs can take a long time to go through everything under the sun before putting folks to the right experts……. But it will be interesting to see what the breast team say.
As for bloods…. In all my 24+ years on this journey I have had 100s of blood tests and not one has every highlighted Lymphoma but can indicate that further tests needs to be done.
The Symptoms are often very noticeable but apart from a small rash on my back I had no symptoms.
The Diagnosis of Lymphoma needs two things to be done…… a biopsy of an area….. like a raised lymph-node and scans to see where in the body it is presenting……. but diagnosis can take time due to there being 60 types and sub-types of Lymphoma some very hard to identify…… I had 2 of them.
But as you have been having these problems for 5 month…… if it was a High-Grade things would most likely have developed far more quickly…… when my second NHL appeared the mass in my neck grew to the size of a brick within a few weeks.
Keep pushing the doors and let’s look for answers soon ((hugs))
