I’m scared

Hi Lisa’s and a warm welcome to this corner of the Community although I am sorry hear about your FL diagnosis.

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

I don’t have Follicular Lymphoma……. (but I have 2 of the rare types of the over 60 types and sub-types of Lymphoma)

FL is the most common type of slow growing Low-grade non-Hodgkin lymphoma UK…….. good new us, it’s very treatable when required.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available.

Every 26mins someone in the UK is being diagnosed with one of the 60+ types of Lymphoma.

Some of this will sound crazy…… but Lymphoma being a cancer of the blood, Lymphatic-System and sometimes in the Bone Marrow you would think it would show up in a blood test…… I have been on my journey (see below) for over 25 years and not one blood test pointed to Lymphomas.

As for the Staging in Lymphoma, it is very different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.

I was stage 4a back in 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.

If you have the letter ‘S’ after your stage (lymphoma in the spleen and thymus) 

Even with stage 4 FL don’t be surprised if you are put on what is called Active Monitoring (Watch and Wait) …… this means that your FL has not progressed to a point where treatment would be most effective!!!

You need to get clear information so the 2 links below will help…..

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

I was officially diagnosed way back in 1999 at 44 - stage 2a…..… although I now realise I had most likely been living with. it for years.

My rare (8 in a million) incurable but treatable is a type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma)…… your FL falls in the low-grade NHL group and at this moment it’s see as a life long, treatable chronic health condition.

Our daughters were 14 and 18 when I was first diagnosed……. I continued to work for 12 years in a demanding teaching job, yes had various skin treatments treatments over these first 14 years but none of the big gun treatments like chemo, radiotherapy, immunotherapy….. etc.

This rhythm could have continued for years but in late 2013…..

I eventually reached Stage 4a when a second, vert rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘types’ is different I most definitely appreciate the challenges of this journey rather well.

So I had some intensive treatment between late 2013 to late 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. 

…… and now eventually, the real encouraging part.

We went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 a few weeks ago and I am 10 years since my last treatment.

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

Once you have read through my post including the links you will have questions so do put them up in a reply.((hugs))

I found out I had FL in the same way you did, a lump in the neck. That was my only sign.

Because an ultrasound showed nothing to start with, I had to wait for a second lump to appear before a biopsy found cancer. 

I was given the option of waiting, because FL is SOO slow growing. But I decided to opt for treatment, which got rid of it. That was six years ago. I am now absolutely fine.

Waiting for staging is scary. But this is not one of the scary cancers. Try to think of it as an irritation to be dealt with, but nothing more. 

Thank you for replying to me and for telling me your story, I really appreciate it. It’s very encouraging and comforting reading this and knowing that you’re now absolutely fine, that’s really great and I’m so happy for you. I really hope to have a similar story. Thank you xx 

Wow! Hello Mike, I hope you are well. Thank you so much for taking the time to go into so much detail about FL and your story. That’s very kind of you and what a story you have. I’m so happy for you that you have gone on to live such a long happy life with your family, that makes me very happy to read that, and also fills me with so much hope. So thank you for that. I don’t even know if I have questions at this point because I’m still waiting to find out what stage I have, and then when I know that, I’ll probably have some questions. I think what makes me sad is that even though there’s never a ‘good’ age to get something like this, it just feels incredibly unfair to get it at such a young age, when I have such a young baby and I am a very healthy/fit person, I don’t smoke I don’t drink or anything like that . I know they told me it isn’t based on lifestyle why I have got this, but it just feels incredibly unfair. I really hope one day I am able to tell a positive story similar to yourself, to somebody else to give them some courage and strength that you’ve given me, and most of all I really hope I do get to watch my daughter grow up.

Thank you again for your kind message - I appreciate it more than you’ll ever know xx

Hi Lisa’s, the more you talk with others who have navigated the same (ish) journey the more you will appreciate that there is most certainly ‘life’ while you live with this uninvited squatter that has take up residence in your body.

Yes it’s pants (oldest granddaughter favourite word) that you have had an FL diagnosis at 31……. but take a moment to look at the wider picture.

Given the choice of what cancers I have I am more than happy that it’s Lymphoma…… I have had a few friends who were diagnosed with their types of cancer…..  (Oesophagus and Pancreatic)…… they lasted 4-6 months.

Back in 1999 when I was first diagnosed and as my condition progressed quickly the then median survival was set at 3-5 years was on the information I was given.

But the fact I am still here living a great life is testament to the developments in treatments.

If you are in the UK you may want to check out….. Lymphoma Action.

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.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… you may want to widen your support and information base by checking them out

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……

Their Closed FB group alone has over 6000 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you and/or your ?????? can be linked up with someone who has walked the same support/treatment journey.

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.