Please help

Hi Ali8 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your partners MCL diagnosis. 

A cancer diagnosis in the family can be ever so challenging but I do hope I can help you out and help you understand the world of Lymphoma.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The first most important thing to understand is that lymphoma is rather different in many ways from sold tumour cancers…… so take a big breath….. and another.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) and every 26mins someone in the UK is being diagnosed with one of the 60+ types of Lymphoma.

But and it’s a big BUT……. compared to most other cancers Lymphoma is very treatable with great results.

Staging in Lymphoma is also rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis….. in Lymphoma it’s just not.

Remember I said I was stage 4a back in late 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

I assume that he has still some tests/scan to get?……

Has he been seen by a Haematologist yet?

Tell me a little more of the back story that has got him to this point.

As an encouragement….. our 2 daughters were 14 and 18 when I was first diagnosed with my first type of Lymphoma……. But I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 my second more aggressive type of Lymphoma came along taking me to stage 4……. but this was still all very very treatable.

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9+ years since my last treatment.

I am living a great life and we continue to look forward to what else life has in store first us to enjoy…….. this can be done ((hugs))

Thank you so much I so appreciate your reply, its given me some hope which is what I need right now. Reading the prognosis stats for MCL was scaring me so much. I'm so glad that you're continuing to do well. 

To answer your questions, hes been given the diagnosis but hasn't been staged yet. His PET scan is on Tuesday. And then the haematologist consultant appointment is Wednesday. From there they will decide what to start treatment with. His back story is that he hasn't been completely well for years - stomach problems, low energy, bad infections. They only did a lymph node biopsy last month after his kidneys started failing after a bad infection in December. It seems that this is all linked to the lymphoma, which is worrying as its probably been growing for years. He also now has back and chest pain. 

So we dont have all answers yet. I really want to be as positive as I can so that I can function and keep everything going for our family.

Hi again and great that my reply has given you hope…… but in Lymphoma there is significant hope…… we most likely would be having a completely different conversation if his cancer was a sold tumour cancer.

Statistics are dangerous….. in reality everyone is a statistic of one…. it is important to remember that they don’t tell you what an individual outlook is like.

They only tell you how a group of people with the same diagnosis did over a period of time.

They are usually measured 5 years or more after treatment, so they only tell you how people did in the past.

Statistics tend to not be up to date and with the ever developing treatment options the stats of today are going to be superseded in the future.

I just got travel insurance the other day…. I still have one incurable type of Lymphoma but my last treatment was back in Oct 2015……. So there were no questions to answer about my Lymphoma as it instantly classed it as being cured….. but it is obvious not…… this is the mystery of Lymphoma.

His route to diagnosis is actually not that unusual… I have talked with many people who have had symptoms for years and by chance get a Lymphoma diagnosis…….

But on the whole the road ahead still results in good outcomes….. this is Lymphoma…. not a solid tumour cancer

Getting clear information is important as it helps reduce the noise between the ears… so these 2 links will help you start a lot of questions you need to ask at future appointments…,,,

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

All the links I put up are taken from the Lymphoma Action website.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey both as a patient and a caregiver.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to help out and answer questions ((hugs))

Hi Ali just a couple of points to add to Mikes advice, if the mantel cell has been there for a while causing some of his illnesses that would indicate he has a slow growing type of mantle cell. This is often referred to as an indolent type. People with this type do not always receive treatment and sometimes go on active monitoring or watch and wait until treatment is needed. The consultant should explain all of this when explaining the full diagnosis. The other point to share is that most of what you will see and read about will be referring to the more aggressive type of mantle cell lymphoma an as Mike has shared that is all historic. Better treatments and new drugs are now being used and many mantle cell patients are benefiting from them. Hopefully they will have all the answers and can share a plan for what comes next.