I have recently started watch and wait with follicular lymphoma. After a pet scan I was told that some activity showed up in my parotid. I have since had two ultrasounds and they have told me it’s nothing to worry about it’s just a reactive lymph node. I asked was it to do with the lymphoma and was told it was not. I don’t mean to ask a stupid question but isn’t a reactive lymph node more likely to be the lymphoma? I’m finding it hard to deal with watch and wait as it is without feeling every query is dismissed and all in my head.
Hi @Mike_69 no question is stupid.
As for watch and wait I prefer to call it active monitoring
I will copy the Blood Cancer UK information for you Active monitoring (watch and wait) | Blood Cancer UK
I have found writing my fears, questions and practicalities down before an appointment helps me and I have learnt to be pleasantly assertive and ask for responses to be in plain language.
You might find your nurse contact more approachable, if you have one
You might consider a second opinion if you are not satisfied and all NHS hospitals have a PALS service (Patient advice and Liasion Service)
I will also copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Be kind to yourself it takes time to get our heads round things
Sorry to hear about your diagnosis of follicular lymphoma. Active monitoring can be difficult to deal with and you not alone in feeling this way. I am sorry if you feel like your queries are being dismissed. Do you have a Clinical Nurse Specialist? If might be a good idea to talk to them about how you are feeling?
Your question about reactive lymph node is definitely not stupid and one that I have been asked many times. Reactive lymph nodes are a natural immune response of the body to things like infection and inflammation, it shows the immune system is actively responding and this can sometimes cause lymph glands to enlarge. This activity will show up on a pet scan because it is a very sensitive scan.
If it would be helpful to talk , please don’t hesitate to give our Support Line a call. I have linked our details here for you Nurses Support Line