Follicular lymphoma

Hi Ruth, sorry to see you having to join us, scans are used to help inform where the disease is and how its shaping up, some use an MRI for the benefits that has over a PET or CT and others use it because it reduces thee amount of radioactive you will receive over your lifetime. Where in you body is your disease presenting as that could be the reason why a MRI may be better than a PET scan, if you let us know then it may help answer your question, did you ask the consultant or nurse why they wanted the scan? may be worth a call if you did not so you know why.

John 

Hi

It's in my breast and groin area.  I had to have the dexa svan because I fell down one step and shattered my foot.  Resulted in having 3 plates and 2 screws.  I'm on sick pay at the moment and worrying myself stupid over hospital tests etc.

I don't fully understand the watch and wait.

Ruth here is a quick guide to lymphoma, first the is B cell or T cell disease, yours is B cell, then the is indolent and aggressive, yours in indolent, mine was aggressive I had DLBC. With indolent and aggressive the are then different sub types and thats where FNHL comes in, its an indolent B cell, bloodwise and lymphoma action have some good info on it as does here at Mac.

Your type will be given a grade and a stage, and these are used to inform treatment plans, here is a link with lots for you to read

https://lymphoma-action.org.uk/about-lymphoma-tests-diagnosis-and-staging/stages-lymphoma

Your type can also wax and wane which is why watch and wait is often the first choice as the longer treatment is delayed its thought to be better, the are a range of treatments and once each has been used it cannot be used again and your type currently has no cure. That said some people can go years between treatments and some ten plus years.

It can be hard to get your head around having cancer and then being told we won't treat it yet, some people manage to think of it as a chronic disease which is treated when it flares up, other struggle and feel better once they have had their first treatment. Chatting to other here should help you find which approach works best for you. 

Ask any questions and someone will be around to answer, also have a look at some of the other posts if you think it may help

regards

John 

Hi and a second welcome to this corner of the Community. Sorry for not getting back to you sooner but I am on holiday but great to see John is on the ball.

I have a different type of Non Hodgkins Lymphoma  but understand full well the issues you are facing. Between my GP and my Dermatologist (I had a skin Lymphoma) it took 21 months with lots of blood tests, 6 biopsies and a few scans to eventually be diagnosed. This started back on 1999 and I was basically on Watch and Wait for over 14 years before I required full on treatment.

When watch and wait is suggested for you, it means it is in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

You can see our stories by hitting our forum names - keep posting as we will do our best to help you through this.

Thanks for the great advice.  I'm all over the place at the moment.  It feels like I'm brain mushed with all the information and hospital visits.  I'm on sick leave from work with a smashed foot so have too much time on my hands.

Between the fracture clinic and hemotology department and psarious im having a tough time.

Just make sure you are going to your appointments with all the questions that are running round your head put down in a note book and take time to get answers to your questions as this does help get the brain in order.

You can not control the medical side of this as this is where your medical team take control. But the battle that you have to deal with is the one that is going on between your ears.

Clear information make the journey more clear.

Hi Ruth.

I have the same, diagnosed 2 years ago this December, in my boob first found then in my groin on the scan,

I'm also watch n wait, but I decided I'm not waiting for nothing, I've had no treatment from professionals but I decided to cleanse my body of chemicals, healthy eating, chemical free products,  good food supplimemts n vitamins,   I am doing really well with amazing blood results, I've list Alot of weight but feel fine,

I find it all very scarey so I have severe anziety which I meditate n do stuff like that,     it's so nice to meet some one who has the same as me, this is the first time I've spoken on a site like this x

Hi Topnan and as it’s your first post welcome.

I don’t know if Ruth is still looking in as her post is over 2 years old now but let’s see.

I have a different type of Low Grade NHL and like FL it’s incurable but very treatable if and when required.

Many people can live years without treatment as FL is a slow growing type of Lymphoma.

Keep well.

Thanks so much, I'll make sure I check dates next time, lol thanks.

It's nice to read about people like yourself,   I'm trying holistically,  one can only try xxx

We all do what we need to do.

When you get a moment you may want to put some info in your profile Click to see how to do this and as always you can have a look at members profiles (if they have done one) by hitting their community names.