Recently diagnosed with low-grade follicular lymphoma and struggling to make a decision wether to start treatment now
Or wait
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Hi @kirbym8, thank you for posting and a very warm welcome to the forum. May I ask how you’re doing since the diagnosis? Understandably this can be a difficult time for people, and treatment decisions can be tough to make. Have you had a chance to talk this through with your team, for example via your Clinical Nurse Specialist? May I ask if they’ve made any recommendations on their end? We’d encourage you to share your concerns with them, if you haven’t already, as it’s important for you to be appropriately supported in your decision-making. I’m sure others will share their experiences here, too.
We’re here for you if you’d like to talk this over, so please don’t hesitate to reach out if we can support you at all (0808 2080 888 or support@bloodcancer.org.uk).
Best wishes,
Tanya.
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Hi @kirbym8 and a huge welcome to the forum.
I to have follicular lymphoma so understand how you must be feeling. I needed radiotherapy straight away and if I’d had to make a decision I know I would have found it really difficult so really feel for you. As @TanyaBloodCancerUK has asked, wondered what your medical team had advised.
The support line is amazing so it might be giving them a call to
Talk things through X
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I am having the treatment through my health insurance therefore the only person I have had contact with is the consultant and secretary
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Has your consultant given his opinion on the two options?
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Hi @kirbym8 I am so glad that you have found us and you have had brilliant responses from @TanyaBloodCancerUK and @Nichola75.
I have a different blood cancer, but what I can remember vividly is the shock of my diagnosis and I was suddenly plunged into a world of medical speak which I did not understand and then I think of you also having to make a decision whether to start treatment or not.
Consider giving yourself time before you make a decision.
Perhaps write down all your fears, thoughts, questions and practicalities to ask at your next appointment and then you will have more information, and then you can feel that you are more able to make a balanced decision.
Do you have any support or someone that might be helpful to go with you to your next appointment.
Be ever so kind to yourself and really look after yourself and please do keep posting
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Hi @kirbym8
First a huge welcome to the forum. I am guessing as you mention health insurance that you might not based in the UK. Therefore treatment protocols might be a little different than what the NHS guidance (NICE) here is in the UK which is what our treatment plans are guided by.
I also have low grade follicular lymphoma and mine was treated at the time it was found because it was bulky ie large in my abdomen. There are many factors that determine when is the optimum time to intervene - the stage , the size , your symptoms,your age, how well you are and these can be supported with medical decisions like your blood count and your scans to help inform the decision.
I am currently on active monitoring I still have lymphoma in my abdomen and we are currently waying up the options if we treat it again now or wait a while.
It’s a hard decision I get it . I feel well right now so I think I am going to leave mine for a while and continue with the active monitoring. I know I am in safe hands and that they will respond if anything changes and treatment can start at anytime.
Do let us know what you decide and how you are getting on.
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