Hello

Thank you for letting me join this group. I hope it’s okay to post here. I’m feeling very lost and honestly quite scared at the moment.

I wanted to ask whether anyone here was initially thought to have sarcoidosis and it later turned out to be lymphoma?

I recently discovered that I’ve had nine years’ worth of chest X-rays showing persistent, bulky bilateral hilar enlargement. I was never informed, and it was never followed up in line with recommended guidance. I had to piece this together myself.

More recently, I developed pain and a large lump in my abdomen. My GP initially dismissed my concerns and suggested it was anxiety. I ended up arranging a private ultrasound, which showed several enlarged abdominal lymph nodes. After I took those results back, I was finally referred — but this time on a suspected lymphoma pathway.

I’m now well over the two-week referral threshold and still haven’t been seen. My GP is reluctant to engage further. I’ve had to attend A&E multiple times for pain relief and oxygen, as my oxygen saturations have dropped as low as 54% at times. I’ve tried contacting the haematology booking line, emailed, spoken to PALS, raised complaints — and I just can’t seem to get any response or support.

I feel like I’m not being heard, and I’m becoming increasingly frightened. At this point, I feel like I’m having to advocate and investigate everything myself.

If anyone has experienced something similar — particularly around confusion between sarcoidosis and lymphoma — I would really appreciate hearing your experience.

I have a toddler and 2 autistic older children and just worried for them all

Thank you for reading