Just in process of biopsies for my husband

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I was diagnosed in 1999 with a rare, incurable but treatable type of T-Cell NHL Stage 4a so I know this journey well.

Unknown said:

everything is taking so long. We went yesterday after waiting over 2 weeks for results only to be told it was suspicious of NHL type b but not definitive

This is Lymphoma for you. when I was diagnosed back in 1999/2000 it took a year, a few CT scans and 6 biopsy to eventually find out what type of NHL I had.

There are over 60 types and sub types of Lymphoma and this means there are many different types of treatments that can be used. So getting a clear diagnosis is important as at times it is counterproductive using the wrong treatment.

This LINK is from the Lymphoma Action website - it goes through the diagnosis process used. As I said there are many types of Lymphomas and this LINK unpacks them....... you will see there are a few different B - Cell types.

I am sorry to hear about your husbands brother and the feelings left by this experience........ some blood cancers like Leukaemia's can indeed be very aggressive.

Many people will say that this seating period is the hardest as you are not in control. You can encourage your husband that when ti comes to Lymphomas these are very treatable with great results........ but the information has to be spot on as there is a limit as to the amount of different treatments the body can take so getting this correct is very important.

My journey is rather long but make a cup of tea and hit my Community name Thehighlander and have a look........ the main thing to get from my story is that even when being diagnosed with a rare, incurable and hard to treat type of Lymphoma there is always a way forward.

Always around to help more or just to chat ((hugs))

Hi Mike

Thank you so much for your reply. It's huge to have this information and know there's people out there who can add to what the consultant has said with real life experiences. A big part of the worry is that delay means inevitable progression of the disease. So having an informed reassurance from someone like yourself that it is vital to get the right treatment and why means the earth. We know the NHS is under pressure and specialists are completely overwhelmed but you can't get rid of the feeling that you are maybe being fobbed off and not being told the whole truth. Many thanks again from both of us.

Hi again , good that you found my post helpful.

Yes the NHS is under pressure but on the whole, the people I talk with who are 'in' the diagnosis then 'into' treatment process are being diagnosed and treated more or less in the normal time frames.

Unknown said:

delay means inevitable progression of the disease

In some respects this is true with all cancers...... but with Lymphoma there is a difference. I went from Stage 2 to 4 in a few months. In most types sold tumour cancers like Breast, Lung, Kidney........ stage 4 is not good news...... but in Lymphomas where the tumour mass is made up of cancer cells having a party....... it's a guide to where the Lymphoma is presenting, what is the best treatment and for how long.

It's important to try and get an understanding as to what Lymphoma is all about and this LINK will help.

If you have looked at my story you will see back in late 2013 just before I had my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating, I was living on a liquid diet, my breathing was starting to be restricted and the pain was off the scale.

My team had to make sure that they used the best treatment so I had to "hang in there" for a month while a new biopsy was done, pathology results were in and my case sent for review by specialist in London.

But when I had my initial 15min blast of chemo (13th Dec) we could actually see my teeth appearing as the chemo started to clear the cancer growth from my gums..... to the point that this got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner...... going back in for my first 5 day/night cycles on the 27th Dec........ the rest of the story you can read.

So the waiting is an unfortunate necessity in this process..... it's time to hold the nerve and trust his clinical team.

Always around to chat and answer questions.

Hi

Its very difficult when you are at the stage you are and the waiting seems to take for ever

The analysis of biopsies can be a slow prosses it is not that they are sitting on a shelf somewhere waiting for someone to have a look at them. 

While counselling will not get the answers any quicker it could help with understanding the path your are starting on and what to expect. A big part of what the individual can do is learning to control the noise in their head.

It gets easier as the various milestones are past but there is a lot of waiting involved, not much can happen quickly when dealing with lymphoma but as Mike says it is very treatable, 

Thanks for this. It's good to hear other people's perspectives at the beginning of our journey. When you hear the word cancer,  especially when you've lost 2 siblings to the disease in the really horrible quick way we both did, its inevitable I suppose that you see the worst picture. To hear the fact that it's treatable and the waiting does end up with a specific treatment, from you guys,  helps a lot.