NHL

Hi, after 8 rounds of rchop for dlbc I had a ct scan as this was 2009 and not many PET scanners about, I had what turned out to be a false positive, I then had 2 PET scans 3 months apart and was told I was in remission, the scan was probably showing the scar tissue as a hot spot as I had a large mass in my abdomen. So its very possible it could be similar for you and fingers crossed it is. I just got on with things whilst waiting for that final scan and decided I would deal with more treatment if and when it was needed, which it was not, as they had wanted to give me radiotherapy when that CT scan showed activity. Its happened to many others too over the years.

John 

Hi John,

Thank you for the reply. 

Thats reassuring to read. I'm very grateful that it's only 2 tiny spots after a stage 4 diagnosis but at the same time, as I'm sure we all do, wished it was completely gone! 

I have a few things to keep me going over the next few weeks e.g. a wedding, many birthdays & a staycation but that anxiety is always lurking, probably will do for the rest of my life! 

With your scar tissue, did you ever have any aches? If you don't mind me asking?

Thanks,

Carys 

Hi Carys CarysW I am 7 years on from the treatment on my brick sized neck mass (I did go on to have other treatments as my low grade NHL just comes back) and any subsequent scans always show up suspicious areas but we know it’s scan tissue. So let hope it’s the same for you.

Carys, I was stage 4 as well and yes the scar tissue caused some pain for a long time, I also had to have a couple more scans in the 5 year monitoring period and they showed the scar tissue continued to reduce, I knew though it would never vanish completely as my mass was classed as bulky and the consultant said I would always have some scar tissue. 

As for the worry and anxiety linked to relapse, it does go, how long varies from person to person, for me once I hit the 5 years clear point I knew I was going to be ok and at 10 years clear I am classed as cured. 

If you have not read Dr Peter Harveys paper here is a link it will help you with life post treatment http://www.livingwell-cancer-support.org.uk/docs/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf

John 

Thank you both for the replies. 

Good to know the pain is valid & could be shrinking tissue. Didn't realise it would cause pains! Dr hasn't mentioned anything previously about scar tissue to me nor my nurse. I don't really have a good connection with my CSN & find it hard to talk to her. Plus I don't know a soul going through or has gone through lymohoma! 

I've started taking amitriptyline for anxiety so hoping that will chill me out! 

Thanks for the reading material, will check that out!

I had a lot of pain in my growth area but this was mainly down to my mass encompassing muscle and nerves, as the mass reduced the muscle and nerves started to stretch back into the new found space….. the pain lasted for a good two years

As the paper John posted says it takes time to regain trust in your body and in yourself.