Recently diagnosed

Hi Pippa PippaJ and a warm welcome to the Macmillan Community but I am sorry to hear you find yourself on the Lymphoma rollercoaster.

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

I don’t have Follicular Lymphoma (FL) but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.

As I said my first type of NHL is a Low-grade non-Hodgkin lymphoma and like your FL……. these types of NHLs are seen as life long, incurable but very treatable Lymphomas where required.

As an encouragement, back in 1999 our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various skin treatments (as my Lymphoma was on my skin) over these first 14 years then in late 2013 my second rare more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4……. but this was all remained 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 turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.

As FL is the most common type of low-grade NHL…… we do actually have a specific group just for FL……. This link >>>>Follicular Lymphoma will take you to that group.

So have you been told the direction your treatment will take?…… are you starting treatment or have you been put on Active Monitoring (Watch and Wait)……. often the first step with FL.

Always around to chat ((hugs))

Hi Mike,

Thanks (again) for taking the time to reply, and for the detail and positive words. I will take comfort from your experience, in particular with work. I too have a pretty full on job, as an IT Manager, and navigating work whilst going through treatment has been weighing on my mind. 

I've just had a full body PET scan and should be getting the results this morning, when I see my haematologist. We will know then what stage I am, and what treatment is recommended. 

Thanks for the link to the FL group too. I'll have some time over the weekend to read through the forum in more detail. 

Pippa. 

Good morning Pippa….. getting results and a plan….. be it Active Monitoring (Watch and Wait)  or actual treatment helps the space between the ears calm down.

You may find a quick look through these links will help you navigate appointments…

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

As for staging…. Staging in Lymphoma is rather 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 and many people with FL can be initially told they are stage 4….. but still don’t have treatment immediately…. It’s crazy but this is Lymphoma for you.

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.

All the best with your appointment.

Great advice, thank you, Mike. I'm very likely going onto watchful waiting, which is good news. My haematologist thinks I'm stage 2a, however we need the PET scan results to confirm and they weren't ready. Will know for sure in 2 weeks when I get to see him again. 

From speaking with my haematologist yesterday, I feel much calmer about it all. It's most definitely not like other cancers in the traditional staging and treatment sense, and I've got some literature to read about potential treatment, should I need it.

Despite me having what I thought are B symptoms, and a week stay in hospital, where a CT scan found my swollen lymph nodes in my abdomen, he believes my symptoms are not related, and this is an incidental finding of FL. That is definitely a good prognosis for treatment. 

Wishing you a great weekend and thank you again for taking the time to reply and for the advice. 

P. 

Hi PippaJ  good to hear that you feel in a better place…… information is power and helps control the noise in the space between your ears.

If you are in the UK the literature you received my well be produced by Lymphoma Action.

Lymphoma Action is the main Lymphoma Charity in the UK and their website has 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 about as long as I have with Macmillan……

You may want to widen your support and information base by checking them out

Lymphoma Action 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…… do especially check out their monthly Active Monitoring Zoom Support group - A great place to talk with others on the same pathway.

Their Closed FB group alone has over 6300 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you 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.

I am always around on here to chat…… the sun is out up in Inverness so away out for a walk and coffee ((hugs))