New Diagnosis and seeking advice

Hi 

I can imagine what you are going through. I was diagnosed in 2024 and told not might need treatment as it was found in three places around the stomach area. As it was not causing me any problems I didn’t need treatment. Depending on the stage and symptoms you can go through life without any treatment but they will closely monitor you and check for any changes   Sometimes called watch and wait 

just keep a little book for anything that crops up between your appointments and go through it with them 

The hardest part is living with the cancer and getting the head around it that you will never been cancer free. But this is not like the general breast cancer and the stages are different. there is a great page on the macmillan cancer support for questions to ask. 
I found d reading about it all before my appointment meant I could ask the right questions and have a better understanding 

good luck. 

louise 

Hi Louise, 

Thank you for the advice! Mine was actually found from a lump in my groin which I went to the doctor about last August. It has taken just under 12 months to get the diagnosis however nothing has drastically changed in that time so I'm grateful and lucky. 

I wasn't aware that this was something you couldn't cure, I found that out through the booklet the I was given. That said, the haematologist has been very reassuring that I will be okay. 

thanks, 

KT 

Hi there I was diagnosed last year I had 8 cycles of chemotherapy and am currently undergoing 2 years of maintenance I was very lucky as had no side effects other than fatigue I even worked all the way through my chemo albeit on reduced hours (i am a postman)all I can tell you is that everyone reacts differently you could line up 20 people and get 20 different responses, however the positives are this type of cancer is easily treated there are many different ways to do it.i strongly advise you to talk to your family you will need there support I honestly believe it's was harder for them than it was me going through it lol but the best advice I can give? Take time to get your head round the word remember it's just a word then stick two fingers up at it stay positive bon Jovi said it best keep the faith! You've got this! Take care

Hi KT Zitrone_Dachs and a very warm welcome to this corner of the Community but I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I have been on my Lymphoma journey for over 26 years first diagnosed way back in 1999 at 43……. 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 Oct 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.

Lymphomas like your Follicular Lymphoma and indeed my first type of NHL fall into the Low-grade non-Hodgkin lymphoma category…….  slow growing and often people end up on Active Monitoring (Watch and Wait) ….. for weeks, months and indeed years.

It’s a mindset you will have to develop in that although you have cancer you may not need treatment as treating immediately would not be a good use of treatment options…… you will be regularly monitored and if required, may have treatment at some point in time.

It took 14 years before I needed full on treatment…… my NHL is very unusual as it looks like bad Psoriasis…… so I did have UV skin treatment but I still worked full time in a demand teaching job, on a full timetable in Further Education for 12 years until I retired.

Our daughters were 14 and 18 when I was diagnosed in 1999 and back then the median life expectancy was 3 - 5 years for my type of NHL…… but the developments in treatments has ment that I have 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 8 months since my last treatment and I am living a great life.

So although you have a cancer diagnosis….. in the Lymphoma world….. there this is great hope.

Are you in the UK KT?

Thank you all for your replies and sharing your own stories. 

For Mike - Yes, I do live in the UK. 

I do intend on telling family but in person as I live far away from them. I want them to see that I am okay to prevent unnecessary panic and worry. The plan is to tell them once I know what my next steps are. Right now the support from my husband and my manager is enough. 

It's reassuring to read others experience in terms of how long they have had this form of Lymphoma and the treatment they have had. I also found the reassurance when reading the booklet given to me by the Haematologist in that this is more of a chronic disease needing to be managed by treatment and that you can live a reasonable normal life. 

I intend to carry on working as I luckily work from the comfort of my own home however will happily take a step back if it makes my life less stressful and gather my thoughts. 

KT x

Good morning KT Zitrone_Dachs  you are approaching this in a sensible way.

Many consultants do now use the term Chronic Health Condition….  After my first 5+ years living with my rare CTCL and the significant developments in treatment….. I had surpassed the then Median survival to the point that my consultant used the term Chronic Condition,,,,, liking it to say diabetes…. the main difference being that diabetes is monitored and treated daily and if things go wrong they can go wrong quickly…… Lymphoma's like FL are ever so different and will be treated as and when required…… a great way to look forward without looking over your shoulder 24/7

This little area in the community is great but as you are in the UK you may also want to check out…… Lymphoma Action the UKs main Lymphoma charity.

The Lymphoma Action 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……

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 6500 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.

Thank you for the guidance and the links. I shall check those out. 

I'm willing to take any advice at the moment while I get to grips with this new way of life to make sure I do what is right for me, my husband and our families x