I was told yesterday over the phone and it still doesn’t feel real. I never expected such a thing at a young age, I had told my mother that I noticed my lymph nodes had been swollen for a little while*months) but it could have been far longer. She told me I should go to the doctor to check it out, he checked it out and referred me just in case, spoke to a consultant, he remarked how tiny they were and he would be very surprised if it was anything bad and nearly 4 weeks later after a biopsy I am told this. That I have a low grade lymphoma and they will need to do a PET scan and blood test to find out more about it.
I feel all hope has left my body, all hope of a normal and long life gone. I feel tainted and disgusted that I have this in my body. I just don’t know how to cope, is it realistic for me to even make it to 50? Is it normal for people my age diagnosed with this to make it later in life? I have so many questions and too much to write but I guess really the only thing I care about right now is knowing how long I potentially could live for, I wanted kids, I wanted a wife….this is too cruel. I feel in part some denial, denial hoping they somehow got it wrong and misdiagnosed me but I don’t think that is possible in this case.
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Hi there @overbeforeitstarted
I am sorry to learn of your diagnosis. What a huge shock for you. It is positive that you have found your way here to this supportive community.
I would imagine you will have loads of questions, thoughts and emotions running through your head right now. Perhaps try to write them down so you can ask your medical team. They may not have all the answers right now but it can help to have them out of your head.
The @BloodCancerUK-SupportTeam are also a great source of support on this page.
I have a thread here as Mum to my beautiful daughter who was diagnosed with Acute Myeloid leukaemia (Acute myeloid leukaemia (AML)) in her early 20s so can empathise with the shock of diagnosis.
Do take care of yourself and use this space to share whatever you want.
Sending positive thoughts for now
Sarah
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Thank you Sarah
I find it quite touching looking at your profile seeing how much you care for your daughter, I have had moments this morning crying and hugging my own Mother. I don’t quite know when this will fully sink in.
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Hi @overbeforeitstarted and welcome to the forum.
As I read your post I recognised all of those feelings following diagnosis. It is such a huge shock, especially when it comes completely out of the blue.
I was diagnosed with follicular non Hodgkins lymphoma when I was 40, just over 9 years ago. Obviously even harder when you are so young.
I think so many of us on here will relate to those thoughts and fears. It’s just so much to process and often we go to those thoughts about what the future holds.
One bit of advice I would give, is please try not to Google. Every journey is different. You can get all of the information you need from here along with the helpline. If you think it would help talking things through give them a call, they are amazing!
Can I ask, when is your next appointment? It will be useful to write down all of your questions, and if you can, take somebody to the appointment with you as often, it can all be a blur.
You will find so many on here who understand. For the moment, take it a day at a time. Your emotions will be all over the place but we are all here to support you. 9 years on and I’m the healthiest I’ve ever been.
I hope these over you have a face a face appointment and give sour about next steps, that will help. The waiting is really difficult.
Take care
Nichola x
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Thank you Nichola for the info. I’m finding I FEEL suddenly very sick after the news, before I felt some minor fatigue but after the news my whole body has reacted from the anxiety and now I truly am feeling like a huge weight is on me.
Thank you for providing the hotline, I may give them a call before my appointment.
My next appointment will probably be in 4 weeks, they said a PET scan will be in a few weeks and then a week after that I will have an appointment to discuss the results.
When you say you were diagnosed 9 years ago, have you needed treatment in that time? The only hope I’m telling myself right now is that I’m one of those people who don’t need treatment for a long long time.
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Awww I don’t know that it ever really‘ sinks in’ @overbeforeitstarted . But you will find a new ‘norm’ and I am sure you will also discover qualities like resilience and strength that you perhaps weren’t aware you had.
I hope you have a face to face appointment soon to be able to ask the questions you have. Do keep us posted when you have some time.
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I hope so Sarah. They need more blood tests and a scan before I can next talk to someone in person.
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Hello @overbeforeitstarted
I’m glad you felt able to start a thread and reach out on the forum.
I can see that SarahMum and Nichola75 have given some personal experience and great advice, which I hope is reassuring and helpful for you.
I am sure at your next appointment you’ll be able to get the answers you need, that are specific to you. The waiting time in between appointments and tests is always the hardest part for many people.
As mentioned, try not to google anything (easier said than done), do use trusted websites and sources if you do want to read more.
A good source of support and help for young adults is Shine Cancer Support they’re such a great charity, providing information for those aged in 20s, 30s and 40s. You can connect with others in person and virtually via them, they also run events.
I’m sorry you feel tainted and disgusted by the Small lymphocytic lymphoma (SLL), but please know that these cells are supposed to be there, they aren’t something that has invaded your body. Sadly the cells haven’t matured due to a genetic fault, which means they don’t function properly. The body tries hard to make cells that do function properly, so it will keep making more not realising that the genetic change is causing the cells to not reach mature phase. The ‘abnormal/immature/Small lymphocytic lymphoma (SLL)’ cells aren’t recognised by the body as ‘foreign’ so your body/immune system doesn’t try to get rid of them and because they are immature they aren’t at a natural phase to die out. (This is what causes the lymph nodes to enlarge, too many cells gathering inside).
Try not to see them as something that doesn’t belong in your body. They are your cells, that have left the bone marrow and gone to mature in your lymph nodes too soon, which is not what is supposed to happen but does when genes go wrong. For some people treatment is needed to help control the numbers of immature cells being produced and/or help reduce the size of the lymph nodes. Hopefully this makes some sense without being patronising to you, it’s difficult to word what I am trying to say well.
This website may be helpful if you’d like to have a to read about emotional responses with a cancer diagnosis: Can-Empower/feelings
If it would help to talk any of this through, you’d be welcome to call our support line, 0808 2080 888, you don’t have to wait until your appointment.
Do keep in touch, let us know how things are for you.
Take care, Heidi.
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Thank you Heidi for your long and detailed reply and thank you for providing sources for support.
Your explanation was great, I feel much more clear on it now.
The hospital called me about an hour ago and arranged my blood test then PET scan is booked both days for early next week so the appointment should be sooner than I thought. I hope it is good news? or makes me feel better than I currently do?
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Hi again.
I had to have an operation followed by radiotherapy in the first year but no treatment for eight years.
It sounds like your hospital are on top of things and I’m glad you don’t have to wait too long.
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Oh I see. Are you expected to need treatment again at some point?
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Maybe, maybe not. No guarantees but as time goes on I’m more confident that if things do start to change, I will know what the symptoms are. I have regular checks and can call at anytime in between.
It was really tough at the beginning but it has got a little easier each year. This forum, and counselling, was something that really helped me.
I found I was always better when I had all the info and had a plan X
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Just checking in in to see how you are doing? X
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Hi Nichola. Appreciate you checking in on me.
I had my blood test on Monday that is meant to be sent to Kings college hospital for some kind of genetic testing I believe?(can’t quite remember what they said).
And on Tuesday I had a full body PET/CT scan, every time I go to the hospital the realization that this is my new reality sets in.
Waiting to be contacted regarding the results of the scan and blood test to see what happens next.
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Good to hear from you and to hear everything went as planned.
I know what you mean. The hospital visits are a lot to take in aren’t they and they make everything feel more real each time you go. It’s emotionally exhausting
Please take good care of yourself and keep us updated when you feel ready 
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