Hello, I'm new to this. I was diagnosed in Dec with low grade non hodgkins lymphoma. I had a pet scan 23rd Dec and results 24th. My doctor wants me to have radiotherapy. I'm now waiting for an appointment. Can anyone give me an idea how long is it before I get treatment. I'm really anxious and nervous.
Hi Seaton12 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I was diagnosed in 1999 with a rare, incurable but treatable type of low grade NHL Stage 4a so I know this journey rather well.
Not sure how long things are taking during these crazy times but a quick call to your consultants office may help get an answer or at least keep the system on its toes.
I have had 3 sets of Radiotherapy (45 zaps) over my years and it normally took a few weeks for the system to get me an appointment to see the consultant radiologist then a week or so before treatment started but you do have to allow more time especially as Christmas and New Year happens very quickly after your diagnosis.
On the whole Radiotherapy is actually not that bad abd for most far more straightforward than chemo.
What type of Low Grade NHL do you have as there are a few?
Good morning Seaton12, so from my very long experience dealing with various NHS departments not just Heamatology is you do have at times to be your own advocate so you need to use every name and contact number you have or can find and get your pointy elbows into the system.
This is important (1) for your own wellbeing and reduces the stress but (2) it keeps the system honest and picks up the times that appointments fall through the gaps in the system...... and believe me its has happened a few time to me.
Follicular Lymphoma (FL) like my Cutaneous T-Cell Lymphoma (CTCL) fall into the general group of Low Grade, Slow Growing NHLs. At this point in time they are life long conditions as there are no treatments that will definitely cure them...... but they are all very treatable - so see it as a life long chronic health condition.
In way of some encouragement when I was diagnosed in 1999 I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in any long term remission”...... but after years of various treatments (hit my community name for the full story) in September 2016 I was told I was in my first long term remission for 17 years, until then I only had 6-9 months periods of remission, so I am living the dream
FL is one of the most common types of NHL and we actually do have a dedicated Follicular lymphoma so worth joining the group and having a look through the posts.
Get on the phone and give the system a rattle - always around to chat.
Louise, same name as our oldest daughter
I was the same growing up, the problem is that these 'bad' stories stay around...... but things have moved on so far. Actually never told my mum about my diagnosis for over 14 years for this very region and when I did she was checking her black cloths......
You will see from my profile I have had a massive amount of treatment, this was all down to my condition being so rare but I am 6 years into remission and living as good a life that any 66 year old could be living - getting the smile 
When I was diagnosed in 1999 I have/had friends who were also diagnosed. Some with cancer (Lung and Kidney) and others with MS, Parkinson's and a few other chronic conditions.
The two with the cancer are unfortunately long gone and the ones with the chronic conditions are still around but they are very quickly deteriorating in from of my eyes...... with no treatments that can stop this.
Get that phone working and see if you can make doors open ((hugs))
