Lymphoma diagnosis

Hi again, now you have your update it helps a little but its still hard to give clear advice as you don't know the type of NHL and when you sub divide them the are 80 differing types, but they do fall into some clear categories mines was DLBC which is a B cell type lymphoma whilst Mike had a T cell lymphoma, after that the is aggressive - fast growing my type or indolent - slow growing which was Mike's type. 

So the stage informs the treatment plan ie the number of treatments needed, as for treatment options that very much depends on the type of NHL and as for success rates, I think we have said earlier don't think about that as we are all individuals and these days due to all the advances, most people respond well to treatment and whilst many treatments are chemo based not all are these days and the drugs are very clever and can help the immune system fight the disease as well.

Thee is a separate NHL group that you might want to consider joining once you know the type.

regards

John 

Hi again , so a little more further along the road.

I was careful in my first post not to make the assumption as to what of the 80 Lymphomas this could be.

I was diagnosed with my type of Non Hodgkins Lymphoma in 1999 and was eventually classed as stage 4a2 and I am still around. Remember that in Lymphoma, stage numbers are nothing like in solid tumour cancers and there are lots of treatments depending on what type it is and how it is presenting.

Due to my growth on my neck (rather like your wife) my biopsy had to be done under a general anaesthetic due to some of my main veins being trapped in the mass. 

Once you have a clear picture as to the type we also have a few dedicated forums:

General Non-Hodgkin lymphoma

T-Cell Lymphoma (my type)

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

Hang in there, this will improve. 

Hi

My son has Hodgkin Lymphoma (but they are all lymphoma), when we took him to GP he had just one lump under his arm, specialist at hospital checked him over thoroughly and didn't think it anything to worry about, but arranged a follow up scan 6 weeks later, by which time they found lumps in both sides of his neck, his collarbone ((these are common areas for lymphoma), and in his spleen (also common location). So by the time he was diagnosed he had 5 areas (though one on one side of the neck was very small). He was classed as stage 3 as he has lymphoma either side of the diaphragm.

It is stage 4 if it has gone outside the lymph system to other organs, so stage 1 and 2 generally have better success rates but they are all good rates these days. The mediastinum (around the chest) is a very common area for lymphomas.

My son has had two lots of treatment & an interim scan and virtually all has gone (if not all). So don't be alarmed, the lymph system is like petrol or oil going round a car, so it is often the case that it can be found in different locations of the lymph system. Around half of cases are classed as advanced (stage 3 or 4 in Hodgkin Lymphoma) where it is in several locations, though I am talking about HL, I'm not sure about Non-HL, but I wouldn't be surprised if it is very similar. Its hard to diagnose as there are often few symptoms until its established in more than one place.

I'm just a lay person so these questions should be directed to them, but the chemo basically goes round the lymph system targeting it all, so don't be too alarmed that it is in several locations.

Stay as calm as you can (says the man who has spent 3 months panicking :-), because they do know what they are doing, your specialist team will sit down and discuss your wife's case as they do with everyone, to ensure they get the very best treatment.

Hi anxious76

sorry to hear about what you and your wife are going through.

And like many other members have said things will look up, it seems impossible now but you will get through this together. Try and focus on getting through one day at a time.

im mum to a 13 y/o with Hodgkin’s lymphoma stage 4 but prior to my son being diagnosed my mother in law was diagnosed with Non Hodgkin’s lymphoma last year.

so a lot has been going on in this past year, it’s been a real tough time but things have slowly got better and we’re getting some kind of normality and routine back in our lives.

With my mum in laws non Hodgkin’s lymphoma she too had to wait for biopsies and results and it was terrifying, however once a treatment plan was made (6 cycles of r-chop chemotherapy) our focus was on getting through it one cycle at a time, one day at a time.

fast forward 6-8 months she completed all her chemo and radiotherapy and is near enough back to her normal self.

my son was an emergency admission and things happened very fast but he’d been poorly for ages before diagnosis and just getting the diagnosis helped us understand why he was feeling the way he was and we looked ahead at focusing on his treatment and getting him better. 

Hopefully things will be clearer to you soon and as unreal as it sounds now it ‘will’ get easier for you both.

all the best 

x