Signs of a relapse?

Hi Rowena, I am sorry to see you back posting on the forum again. I was just starting my treatment for NHL in 2013 but some of the folks who were around in 2013 are still on the forum so I am sure they wi get back to you.

My treatment journey was rather different but over two years post my chemo, radiotherapy and two Stem Cell Transplants I found a pea sized lump on my neck on the opposite side from where my brick sized growth was. It was all checked out and turned out not to be a problem but every now and then I think it’s getting bigger, but once my wife rebranded me “don’t touch the lump” it actually goes back to its normal size.

Lets look for this not to be an issue.

Thanks Mike,

Chemo damaged my body a lot, so I never really know what's going on with it. But, this is my first lump scare! It's in such an inconvenient place... it's hard to find. Well, for me it's easy now but for other people, it's apparently not so easy. The groin is full of ligaments and bones and whatnot, and I'm quite slim, so it's like "Nope... not that lump. That's just the ligament". A neck node is far simpler and far less awkward. Fortunately, I have my first ever female haematologist. Not that dignity really matters in these things. That was lost a long time ago...

I remember my haematologist at Bath telling me that because I'd only had 3 cycles of ABVD, that he would bet money it would come back. It would annoy me if he was proven right, because that was such an arse thing to say. And I'm in the middle of a PhD... and it's hard enough haha. I haven't been able to really focus recently, worrying about this. I've been trying but my brain isn't cooperating.  

I will keep my fingers and toes crossed for this to go in a good direction ((hugs))

Hi Rowena,

i too will keep everything crossed for you, but IF it should have returned there are more treatments available now.....

hugs xxx

Thanks Moomy,

We moved house, so I'm at a University Hospital now and they do all the trials there. So, if there is something new, they'll be doing it. They have a whole centre full of PET-CT scanners, so they can learn the best ways to identify new cancers. I remember when I had HL in 2013, having to travel across the country to find a PET scan, because no one had one. So, this is a novelty. Not that they'll likely give me one... I'd like to have one. But I will settle for a normal CT scan. 

Luckily, I do my PhD at the same university that owns the hospitals. So, I managed to get in touch directly with a haematologist, and am seeing an expert in lymphoma and lymphoma research. I am hoping if anyone will know what my lump is, she will. I had a really terrible experience last Monday with the GP referred haematologist, who clearly wasn't a lymphoma specialist and told me "soft lumps tend to be cancerous, hard lumps tend to be fine" - which is the opposite of the truth. And then he refused to feel my lump, as it was in my groin, so booked me an ultra-sound for 4 weeks time to "make me feel better". Despite the fact that last time I had HL it was in my chest, so a CT would be more appropriate. We aren't going back to him. The hospital was horrible too. No reception. No waiting room. Just a chair in a corridor. I had the first appointment of the day, and he didn't turn up for work till 25 mins past my appointment time and then stood around chatting to nurses etc. 

Hopefully the new haematologist tomorrow will be better. Fortunately, I am wised up to what should be done and what's not normal, but I worry how many unknowing people that haematologist has dismissed.