I am really struggling after my accidentally found diagnosis of follicular lymphoma. I am symptom free and only in my 40s. Looking for any advice how I come to terms with this condition and if anyone else diagnosed young without symptoms?
Thanks in advance
Hi @Cakey2025 I am so, so glad that you have found us.
As I read your post it really brought back to me the thoughts and feelings I had at diagnosis.
I was diagnosed at 53 yrs old, by a gynaecologist, again, perfectly healthily with no symptoms that I realised with another blood cancer.
I was in shock for a long time and my thoughts and emotions were all over the place, logical/illogical, sometimes conflicting etc.
You ask about how you come to terms with your diagnosis and I would say just give yourself time and it does take time,
If you have not got any symptoms just try and live your life as before, I know, easier said than done.
I hope others will be able to share their experiences for you.
You might well be actively monitored (commonly called watch and wait) at regular intervals.
I was diagnosed 21 yrs ago and I am being actively monitored.
My diagnosis gave me the opportunity to assess my life and what I wanted to do and with whom. My conclusion was that family and friends are priceless and the best things in life are free.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Really look after and be very kind to yourself, give yourself time and please do keep posting.
Thank you so much, your post brought me to tears. It all feels so overwhelming and active monitoring a new level of anxiety but 21 years with FL brings me hope xx
Hi @Cakey2025 sorry if I misled you but I actually have Chronic lymphocytic leukaemia (CLL).
I reckon active monitoring is good because it means we are being checked on a regular basis.
Just be very kind to yourself and give yourself some time.
Hi @Cakey2025.
I was diagnosed with follicular lymphoma 8 years ago when I was 42. I was happily getting on with work and family life and it hit me like a ton of bricks! I had a random lump appear on my face but no other symptoms.
Itâs really tough hearing those words and there were times when I felt it would never get easier. However, itâs always on my mind but doesnât overtake me anymore. I realise Iâll have bad days and thatâs ok.
I can imagine your emotions are all over the place and you must have so many questions. Can I ask, are you going to receive treatment or will you be on active monitoring?
Iâm really glad you have found the forum as we all understand that feeling at diagnosis. Itâs so overwhelming. Have you got a good support system around you?
There are a few of us on here with follicular lymphoma which may help in sharing experiences.
Please remember, itâs going to take time to process things and thatâs ok. Donât push yourself to hard, write down any questions you have and just be kind to yourself.
I can see @erica has given you the support line details. Itâs sometimes really helpful to talk things through.
Please keep posting, it really is a place of support which I wish Iâd had at the beginning of my journey x
Hello there @Cakey2025, welcome to the forum. Iâm so sorry to read of your diagnosis with follicular lymphoma, and the surprise of it. My own diagnosis with Polycythaemia vera (PV), a different blood cancer, was somewhat out of the blue as I also had no symptoms.
Perhaps youâd like to read the Blood Cancer UK information about follicular lymphoma: Follicular lymphoma - what is it, symptoms and treatment | Blood Cancer UK
Although Iâm not a doctor, I note that weâve been diagnosed with different cancers that are both considered chronic, as in slowly developing. Having no symptoms and a chronic form of blood cancer may hopefully come to feel less of a struggle for you as it can mean that you may never have symptoms, nor need to make any great changes to how you live.
Being diagnosed young, as I was, means science has a chance to catch up with our illnesses and find treatments that can bring about cures and/or remission. But in the meantime we have our âyouthfulâ energy and long lives ahead of us.
Perhaps you could note your concerns and any questions that come up for you about your diagnosis and ask your specialists? They should be able to explain any risks and what potential symptoms to look out for as you settle into your life ahead.
My own haematologist has been helpful in reminding me that I am likely to live a long life and die with Polycythaemia vera (PV) rather than from it. Perhaps your specialists can share similar comforting information?
If you feel that talking this through might help, the lovely specialist Blood Cancer UK nurses are available on 0808 2080 888. If talking it over with a therapist is something youâd want, MacMillan offers free therapy, and Iâm sure your GP could refer you to NHS therapy (although waits tend to be long).
Have a look around the forum @Cakey2025 and youâll find many others living well with follicular lymphoma and Non-Hodgkin lymphoma (NHL). Perhaps seeing that there is life after diagnosis might help right now, I really empathise. Do please let us know how you get on, youâre not alone with this!
Welcome @Cakey2025
Although it would be nicer if we didnât have to meet I am sure.
I was diagnosed in 2018 - a very incidental diagnosis. I am in active monitoring and keeping well.
I had a 9 rounds of rchop and 2 years of maintenance and now I see my consultant for regular review every 4 months.
I was advised whilst I have an incurable cancer it is a chronic condition much like some other chronic illnesses. I do try to think of it as such.
Thinking of you remember we are all here to support you.
Thank you all for taking the time to reply. Sharing your personal stories have helped me greatly to not feel as alone. I have seen haematology consultant today and awaiting PET scan for staging and plan. Active monitoring or ritxamub infusions have been discussed. I am sick of investigations but hoping after this one will have all the information we need to complete the picture.
It is so difficult at the moment to process cancer can be a chronic condition but I am sure in time a new normal will form. The specialist nurses have been calling me to support and this is helping answering my questions.
I am healthy and active and I need to try to focus on this in the present rather than escalating thoughts to what might happen. Itâs all early days to accept. I am finding it hard and tiring telling my loved ones and closest friends, I donât know how I will share it openly with work as I find it overwhelming if too many people are contacting me. Did you find it took time to talk about blood cancer openly or share it as a chronic health condition?
Kind regards
Hello @Cakey2025, Iâm really glad you reached out and donât feel quite so alone with all this. It is a lot though, isnât it?! It really can feel very isolating. I think being younger at diagnosis with something chronic can bring up feelings of how will I tolerate this for years?!
Really glad youâve been in contact with specialist nurses and have a treatment plan ahead. Joining this forum is another great way to feel less alone. Finding others here living with the same and similar blood cancers has helped me loads since diagnosis, and hopefully it will continue to for you too. Do keep looking around the forum.
Remember that you can tell people at your own pace and that actually you donât need to tell anyone if youâre not ready to. The same can apply at work. Keep in mind that having any type of cancer means you can legally expect provisions to be made at work so itâs easier to manage your workload. You can call the lovely specialist nurses at BCUK and theyâll have information about this.
I found initially after diagnosis that I could feel bombarded by questions and assumptions from others, and actually it wasnât until I understood my blood cancer better that I felt confident to talk to others about it. Still to this day Iâll have people try to tell me all about their unrelated experience of someone elseâs cancer and Iâll politely point out that we all react differently to our diagnoses and treatments, and in fact some people donât need treatment at all except being under âactive monitoringâ AKA watch and wait.
Just wanted to say that being physically active and healthy are some of the best ways to tolerate this. Keeping active can help your energy levels, moods, and work any anxiety out of your system. I read some cancer research after my diagnosis that showed doing exercise like yoga, Pilates or tai chi can really improve our energy. I hike and try to walk every day which keeps my blood flowing! Youâll know what kind of activities youâll enjoy doing.
But donât forget to treat yourself after appointments! They can get a bit much at times, what with all the blood testing and awaiting results and so on, so try to offset those with treats of some kind.
Do keep us posted about how you get on @Cakey2025.
Hi @Cakey2025.
I took me a while to tell everybody. Firstly close family and friends and key people at work. I didnât tell my children until a while after. I needed somebody to know at work as my emotional wellbeing was affected more than my physical.
I did print off some of the Blood Cancer Uk information for people to read as I just cried when I tried to explain it. People were really kind.
You need to do things at your own pace. There is no right or wrong way - just the way thatâs best for you and you may not know what that is yet. Just take each day or hour as it comes.
Itâs great that your CNS nurse is keeping in touch and they are great at explaining things and answering questions X
Yes we have nt told our adult children as they all have issues going on and we donât even know enough detail yet of type , I also have told couple friends at work but I donât like to hear anyone say im so sorry you have had this diagnosis , itâs just something I donât think helps , , sounds bad that I donât like that response but that just the truth ! Itâs just very negative . Anyone else feel like that .
Hi @Lindy1 I know what you mean about people saying âsorryâ, but in retrospect nobody knows what to say or how to be, we do not have manuals to help us.
My pet hate is people saying to me âoh, you do look wellâ, when I was feeling lousy inside.
Nobody could understand (including me) why I just did not have an operation and get cured and we would all get back to normal, so how could I explain it to others.
Some people avoided me, some just did not look me in the eye, some want to talk about it, others avoided the subject.
I can remember feeling I was looked at as âErica with Leukaemiaâ, for a while and not just âEricaâ, but it passes.
I attach the details from the Blood Cancer UK website on money and work for you in case you need it
Blood cancer: money and work | Blood Cancer UK
The main thing is you tell people when it feels right for you and they do not find out from someone else.
There is information on the Blood Cancer UK website that might be useful.
Really look after and be kind to yourself
I think itâs so difficult for people to know what to say and you only really understand that when itâs being said to you.
Like @Erica, people reacted in different ways when I told them. Lots used the word brave which I really didnât like. I didnât feel brave, I was petrified and just had to get on with it. However, they were being kind and supportive and had no idea on things they should or shouldnât say. To be quite honest neither did I!
I agree in making sure your children know before they find out from somebody else - I know this will be a tough conversation but youâll be ok and sometimes, itâs a relief when people know and you donât have to worry about telling them.
Please keep us updated on how you are doing X
Thank you Erica . 
Yes thatâs very true , the worry of telling family is always on our minds but we re just waiting on further info re which lymphoma it is , ANP said to wait on final diagnosis ,
The more information you have the better. This then limits the questions x
Yes very true because I know there will questions lol