Just Diagnosed with Follicular non Hodgkin lymphoma

Hello Hallconnie, 

It's not unusual for the tests to take ages when the disease presents a bit like all sorts of other things.  I went from dental to ENT to orthopaedics over 6 months and finally got a diagnosis just in time for Xmas.  Sounds like you're in the midst of a busy life and wondering how to fit this new reality into your days.

Your positive attitude will help, plus knowing that it's a treatable condition.  I'm in remission now and hope it'll last for years!  I have a friend who's just been diagnosed and it can feel quite scary not knowing what will happen.  I found my treatment wasn't too bad.  I had my chemo alongside patients with solid tumours and many had had major surgery, and grateful that at least that wasn't planned for me. 

Best wishes for your PET scan today!

Cecren

Thank you so much. 
Had another call this morning about a bone marrow biopsy next week then hopefully discuss the next step with consultant.

I am definitely staying away from google as that’s not doing me any favours.

So pleased that your all good and fingers crossed everything stays that way.

I am a busy working mum so it’s hit us all quite hard. 
Rachel x

Hi Rachel

I’m sorry that you’ve had to join this group but having said that you have come to the right place to get support and help with even the smallest of concerns that you may have.

12 months ago I was in exactly the same situation as you are now. I was diagnosed with low grade Follicular Lymphoma just as the country went into first lockdown last March. I’d not been poorly but had a problem with my left ear which kept blocking. During a ENT appointment they discovered a tumour in my nasopharyngeal area.  A biopsy was done mid February and the results came back at the beginning of March. My care was then transferred to the Haematology consultant 
   
I couldn’t get my head around the fact that I was being told that I had cancer but that they weren’t rushing me into hospital to deal with it, instead I was told that it was a case of watch and wait. Due to Covid I was contacted by telephone monthly by my consultant and didn’t actually get to see him until August which was when they felt it was safe enough to attend for a scan. One other tumour was found in my groin. 

12 months on and other than having to work from home, most things in my life are back to normal although due to Covid I and my family are still taking extra measures to protect me.

The nasopharyngeal tumour has unfortunately blocked my ear totally and so I’m about to have radiotherapy to clear it. I’m told that the hearing will return. After my initial shock of being diagnosed I’ve come to realise that this is a a chronic illness and if and when problems arise through the years, I will be given treatment. After this round of treatment, hopefully I will go for many years without  the need for further treatment.

As Highlander has suggested Lymphoma Action has lots of information, booklets and videos and I found them extremely helpful.

Take care

Teresa x

Hi Teresa,

Can I ask why you call the raised lymph nodes "tumours"? I was told that it's a blood cancer and the lymph nodes swell to fight off the "invader". Tumour hasn't been mentioned at all by anyone I've spoken to, thank goodness because I think I would have gone into a major depression.

Hi ,

It was what I was told they’d found right at the beginning and it’s what It was called  by the the surgeon who did the biopsy. I think he could see how upset I was and he explained that any abnormal growth of tissue is classed as a tumour whether benign or malignant. 

Following my scan, my  Haematologist just told me I had another affected lymph node in my groin.

ps I did go into major depression. Couldn’t eat and couldn’t sleep. 

Teresa x

Hi again ..... indeed our Lymph-nodes are part of the bodies safety system and its role is to fights off ‘invaders’ but once blood cancer cells start to congregate and have a party  that is when it is classed as a tumour.

In the early days of a low grade NHL your Lymphatic system may well have been dealing with these cells before the part got going.

Blood cancer tumours are a collection of cancer cells that once these areas get big they need to be dealt with, basically melting them away with treatment.

It is very usually that a NHL tumour is removed by surgery unless it’s endangering life..... but in removing the mass some of the bad cells will most like escape and find a new party.

Blood cancer is completely different from solid tumour cancers as it can appear anywhere in the body... think a small cell flowing through our blood and lymphatic system looking for a friend to start a gathering.

You want to read up on the subject so again this is the the link to Lymphoma Action, as there information is great.

I had a rare skin NHL and the tumours where on my skin but it was not skin cancer (hit me community name for my story) ((hugs))

Mike, your reply feels like a lecture! I HAVE read up on it, I HAVE spoken to others and I HAVE looked on LA, watched videos, sent for books etc. Not one person I have spoken to in connection to my lymphoma has called what I have a tumour. So NOT I do NOT need to read up on it thank you!

It's so weird, maybe it's because mine has been caught extremely early, but not one person has said tumour in connection to mine. I was diagnosed in March this year and it's been hard to get my head around watch and wait; I have cancer, why aren't they treating it? It's so hard to understand... x

Hi again  so sorry that my post came across as a lecture, that was not what it many be, so sorry for that.

What I put down was the words that were used by my Haematologist to describe the process to me a number of years back 

Sorry if I came across in any way that offended ((hugs))

Oh dear

My post seems to have caused a few problems. I can only reiterate what I was told. As Mike says, I’m sure he didn’t mean it to come across as a lecture. He is very knowledgable and has always answered my concerns in the past. If tumours have not been mentioned to you perhaps it is because you have been diagnosed very early. I really can’t say. I have to say I like Mike’s party analogy though.

As I previously said I was diagnosed last March and got myself into a right state about it. I too wondered why they weren’t rushing me into hospital to get rid of it. 12 months down the line and I’m a little more accepting of my situation and realise that it’s a chronic illness that I have to live with and it will be treated if and when it starts causing problems which is now the case with my nasopharyngeal tumour. My consultant has said if it wasn’t causing problems (like the one in my groin isn’t ) they would leave it to rumble on. Unfortunately it’s blocked my left ear causing complete deafness on that side.

A diagnosis of any cancer is horrendous and it’s natural to be upset. It’s very early days since your diagnosis and we all understand what you are going through as we’ve all been there. One bit of advice that I can give right now is to stay away from Dr Google as some of the information that you get is way out of date.

Take care

Teresa x