Hi. Im 32 and was diagnosed mid 2019 with low grade marginal zone lymphoma. This was discovered by fluke. I qas on a workimg holiday in Australia and came down with some sort of virus around the end of Sept 2018. After 3weeks and about 11 tubes of blood later it was noticed that my liver count was low and after an ultrasound they spotted a tumour within my liver. 5 days and a longggg flight home later, I was in my GP surgery who were in no rush to refer me. During this time i was questioned by a liver specialist why i thought i had a tumour and why i came home to investige the tumour that was found on a scan in Australia. Anyway, also during this time i noticed i had a raised lump behind my ear and a smaller on on the back of my neck. I was referred ro ENT who decided to remove the lymph no behind my ear. The liver tumour came back as benign and not harmful in the slightest. The biopsy came back my nodes were cancerous. I am on a watch and wait with the mention of being discharged and to get in touch if i start to develop symptoms. I really struggled to get my head around the fact I have a form of cancer that i have to keep until it may or may not get worse. Having to return to the uk, total change of lifestyle and diagnosis, amongst other factors, it has severely affected me mentally. Although i am very very thankful as it could have a lot worse, i am really struggling and am now on long term sick from work. I have also just got the devistating news that my Mum has a incurable lung cancer. I am looking for some support or how to go about alternative therapies. If anyone has any info or can point me in the right direction id be truly grateful.
Hi again , having a low grade incurable Non Hodgkin’s Lymphoma is a battle between the ears. It is so counter intuitive to be told you have a blood cancer but there is no need to do anything about it…… at the moment?
Many people live a long and happy life with these types of NHLs and some never have treatments. But those who eventually go on to have treatment find that there are some very effective treatments.
For me it took 14 years on Active Monitoring before I needed full on treatment and I am now over 3 years out from being discharged by my team.
So sorry to hear about your mum and when it comes to the practical challenges of supporting someone going through this journey you may benefit from talking with others caring for family and friends so do check out our Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, nurse team support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
