Diagnosed with NHL today! Feeling scared...

Hi Parm and welcome to our corner but sorry to hear you are on the Lymphoma journey and understand you being anxious but “how to stay positive?”

I was diagnosed way back in 1999 and I am still around doing great. Lymphoma is very treatable with great results so take a breath.

This diagnostic part is often the hardest but once your team know your type of Lymphoma and stage a plan can be put together.

There are over 60 types and subtypes of Lymphoma so great care needs to be taken to get a clear diagnosis as this then pinpoints the type of treatment and for how long...... but this will take a few weeks to be done.

Please do understand that in a blood cancers like Lymphoma the stage number is used as information to select the best treatment - it is not the same as in solid tumour cancers like Breast, Kidney... as the higher the stage number in these cancers can be a bad prognosis.

Good information is important so no random Google searches. A good place to find safe and accurate information is on the Lymphoma Action Site - use the link below.

We are here to help as best as we can so no question is silly.

lymphoma-action.org.uk/about-lymphoma

Hi Mike,

Thank you so much for replying. I feel a weird sense of relieve reading your message. 

I’m sure everyone in this situation always thinks of worse case scenarios and you’ve help me put things in perspective.

I’ll look at the link you’ve kindly provided and definitely stay away from google!!

Thank you so much! 

P x

Good to hear that the noise between your ears is slightly less prominent.

There is no one size fits all when it comes to Lymphoma Diagnosis and treatments so best not jump to any conclusions until you have all the facts.

The Lymphoma Action information is very good and the link below explains the diagnostic process.

You can see my journey by hitting some of the members journeys by hitting our names.

Always around to help.

lymphoma-action.org.uk/.../tests-diagnosis-and-staging

Hi Parm

Started my chemo A year ago yesterday 1/4/2020. Its doable and is now becoming just something else that's happened in life.

Personal we decided that we would let our friends and family know about it and that turned out to be the correct move for me. There was a significant number of friends of friends that have been through NHL in the past and are still doing fine years after.

A year on feeling fine. I was out on the hills today and fitness may not be quite back to 100% but it's not far off. If someone had been able to tell me when I was going through the investigations  that I would be feeling like this 12 months on I'm not sure I would have believed them.

As Mike says getting things sorted in your head is a big step on the road. Once you know the type, the treatment and get that started things will start to become manageable. 

Hi Garfields,

Thank you for your message.

It’s so much comfort hearing about inspiring people as your self who have been through this and can confirm there is light at the end of the tunnel. 

I am trying to take each step as it comes. Honestly feel a bit anxious and just want to start my treatment. The lump in my neck is compressing my throat so I’m always feeling uncomfortable.

As yourself, I decided to inform close family and friends and feel blessed to have such supportive people around me.

Thank you once again for your message.

P x

Hello. 
im so similar to you, Parm. My diagnosis came like a bolt out of the blue. I thought I was seeing a dental specialist about impacted wisdom tooth, came out having lump on my palate  biopsied and a diagnosis that has scared the bejeebies out of me and I’m really struggling to come to terms with it. The waiting is horrendous & because I can’t find any info on this, I’m going absolutely out of my mind. 
How’s things for you now, further down the line?

Hi Maam and see it’s your first post so welcome.

The pre-diagnosis time can be challenging.... what information do you know so far - let’s see if we can help you more.

Thank you.

So far, all I know is that I have NHL. The lump is on my palate, next to my teeth which feel rough now as do my gums. I have an awful droning sound in the back of my head which I’ve been told is tinnitus but I’m scared stiff now that it’s something sinister also.

As yet, support hasn’t been brilliant so anything you can let me know to help settle my nerves would be helpful. I’m so scared!

Hi Maam,

I completely understand how you are feeling. The main reason for my sheer fear was the unknown...the highlander and Garfields experience and knowledge was a source of major comfort. I made sure my consultant knew exact what type of lymphoma I have and I have a treatment plan for it. 

I decided to go through private treatment instead of NHS as I didn’t want a long wait in treating the cancer. 

I was diagnosed on 1 April and had my first chemo session this Tuesday gone. I can’t say it’s plain sailing but you have to stay positive...all you have to remember no matter what happens you will over come this and get better.

p xxx

Hi again Maam and thanks for this, as a biopsy was done and they say it’s a type of NHL they should know what of the 60 types and subtypes of NHL this is.

Have you received any written confirmation of diagnosis or given a contact number for a Specialist Cancer Nurse?..... you need to get to the bottom of this and get the truth so call any number you have and ask.

Where your NHL is presenting tinnitus can happen but once treatment starts it will normally reduce and hopefully go..... I say hopefully as one of the drugs used during my 21 years journey damaged my hearing permanently but safe to say I don’t think you will be getting this drug..... hit my name for my journey with a rather rare NHL.

What if any treatment has been mentioned?