Hi everyone,
Pretty woeful with introductions, so hey! The last month has been a rollercoaster of emotion. Bit of a back story, had a lump on my throat for around 18 months. Multiple trips to the doctors and was told to keep an eye on it.
4 months ago a biopsy was done on the lump (finally) alongside an ultrasound and MRI. Results came back clear of cancers and tumors (phew, huge weight lifted)! The consultant was not happy that the lump was still visible and we both elected to have an operation to remove the lump and investigate further, a few days over a month ago I had the operation and the lump was removed.
A little under 2 weeks later I receive a dreaded phone call to attend the hospital the day after first thing. Well it was confirmed and re-confirmed that I had been diagnosed with Nodular lymphocyte-predominant Hodgkin lymphoma. Absolute right hook to the face when I was told since I did have an all clear of cancer earlier.
Since then I have had a lot of bloods taken, had a PET scan, CT scan and further pokes and prods, I'm at a situation where all my tests are done and I'm just waiting for a phone call for my appointment to discuss severity and treatment options. The last test was Friday just gone.
Being 30 years old I thought I was pretty invincible, relitivly fit, hike most weekends and my dog demands a ton of walks! My family has a terrible history of multiple different cancers but non along these lines. It's safe to say I'm terrified, I'm trying to be as positive as I can around my family and fiancé but there is a constant dark cloud following me. Unfortunately the family members that I could talk to that have direct dealings with cancers are no longer here.
So I guess that's why I signed up here to hopefully speak to people and possibly settle my mind a little if someone has been in the same situation as me one way or another or are currently in the limbo stage of knowing what's up but not knowing the next steps.
Thanks
Hi Andy Andy H and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Nodular lymphocyte-predominant Hodgkin lymphoma or NLPHL for short but I was diagnosed way back in 1999 at 43 with another rare (Incurable) but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
NLPHL is actually more rare than my CTCL..... with about 200 people are diagnosed with it in the UK every year...... my type is about 350 diagnosed every year........ but 23+ year on I am still living a great life so be encouraged (you can see my story through the link below)
As I said my type of Lymphoma is incurable but I am in remission at the moment....... many people with NLPHL do go into complete remission although some do relapse and need further treatment.
You use the word "severity"..... and I can understand your concerns in light of your families unfortunate history of cancer..... but Lymphoma is a completely different type of cancer. In most solid tumour cancers like Lung, Kidney, Prostate..... being told you are Stage 4 is a very poor prognosis..... but in Lymphoma Staging is completely different.
Remember I said I reached stage 4a in late 2013....... well it made no real difference to my outcomes. Staging in Lymphoma is used to identify where your Lymphoma is presenting, what is the best treatment and for how long...... so take a big breath.
I am not saying that the journey will be a walk in the park but the treatments used are very effective and are all do-able.
There have been a few members over the years with NLPHL so let's see if they are still using the site. You can do a site word search so do put in Nodular lymphocyte-predominant Hodgkin Lymphoma or NLPHL into the Search Tool 
near the top, hit ‘anywhere’ and this will bring up the older posts and as always you can hit reply to see if the members are still using the site.
Information is key so this link Questions to ask your medical team about Lymphoma will help you set out your top questions you need answers for at your next appointment
Always around to help more or just to chat
Hi again Andy Andy H ...... your initial story about arriving at a diagnosis and subsequent turmoil 'between the ears' is ever so familiar as I have read it so often but clear understanding and information brings control and power to navigate this journey...... on the medical side of stuff you are basically a passenger..... but you are able to take full control of what goes on between your ear.
It actually took me 14 years to work through all the stages to eventually reach stage 4. There is actually a massive lack of understanding about Lymphoma despite it being the 5th most common type of cancer in the UK.
I did not cover all your points in your first post as it's best to drip feed...... as for walking your dog this will be one of the best ways of overcoming the inevitable Fatigue that will develop. You will see from my story that during my main chemo I walked the corridors of the unit with my trolly and 2 IV units pumping away and this did make a difference to my recovery...... the less you do the longer the recovery.
My journey was more complicated as my main chemo was only a stepping stone to get me into the position for further life saving treatment but I am over 7 years out from my last treatment and doing great.... living the dream in fact.
All the links are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
This group is here to help out at any time.
