Questions for the doctor / waiting times

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A couple of months ago I had surgery on one of my lungs to grab what was initially thought of as breast cancer mets. Turned out most of the findings were just unrelated rubbish but one of them was flagged as NHL, likely follicular b cell. They were sure about the NHL part but seem to be unable to confirm the rest of it all the way, so my diagnosis at the moment is along the lines of, "we are pretty sure" rather than, "yep, that's definitely what it is." Now, my blood values are beautiful and I am not symptomatic so the message from the lymphoma team is that this is not urgent. However, a referral was made by my breast cancer oncologist sometime in late September. 

Ideally I would like to get some definite answers (one of the answers I would like to get is, "we are putting you on wait and watch") but for that an appointment needs to happen. I am aware that waiting time would vary from area to area but it would still be good to get some approximation by hearing how long people here had to wait for their own first appointments.

Additionally, I have started a list of questions that I want to ask during that first appointment. Please tell me if I am missing anything:

  1. Pathology are saying that the BCL2 gene is not rearranged, is there another way to confirm follicular b cell?

  2. What tests and scans are needed?

  3. Stage? (Risk score?)

  4. How can we verify this is primary pulmonary lymphoma?

  5. What is the treatment?

  6. Prognosis?

  7. Coordination with breast team?

  8. What should I watch out for?

  9. Could this mutate to another type of lymphoma? If so, what are the chances of this happening? How do we find out?

Lastly, if there is anything anyone thinks I need to know as a newcomer to this corner of Cancer World, I am listening, and thanks in advance!

  • Hi  and welcome across to this corner of the Community although always sorry to see folks joining us and sorry to hear about your double cancer hit.

    I am Mike  and I help out around our blood cancer groups.

    I don’t have FL but was diagnosed way back in 1999 with another type of low grade, rare incurable but treatable type of skin NHL Stage 4a and although my Lymphoma ‘type’ is different I have experienced many types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

    so my diagnosis at the moment is along the lines of, "we are pretty sure" rather than, "yep, that's definitely what it is."

    This sounds oh so familiar. With 60 types and subtypes of Lymphomas sometimes getting all the ducks to line up for a clear diagnosis takes time.

    Although my Dermatologist was 99% convinced about my type it took a year, a few CTs and 6 biopsies to eventually find the truth.

    Unlike high grade NHLs low grade NHLs tend to be  slow growing and folks can go years on Active Monitoring, I find this term more helpful then Watch and Worry….. sorry Wait ;)

    It took 14 years before I had to have any big gun treatments although my skin was being treated as though I had very bad Psoriasis (hit my name for my full story)

    It’s rather ironic that blood tests for someone with a blood cancer like NHL can always be more or less perfect….. it was only once I started my main treatments that my bloods went wonky but it was nothing to do with my NHL and all to do with the treatments.

    As for seeing a consultant, things are very different across health boards let alone the UK. I have talked with others both on here and on another support platform where people have been diagnosed and as yet not seen a consultant for months, yes talked with them but not face to face. But in the same breath where folks have been experiencing B symptoms face to face appointments have been made rather quickly. 

    Your list of questions are great.

    Stage is an odd thing in Lymphoma and is seen totally different from solid tumour cancers like breast.

    The Stage number identifies where the Lymphoma is presenting in the body, what treatment is needed and for how longer. I was stage 4a for a number of years and made no real difference to the outcomes until my condition became aggressive.

    FL like my CTCL is incurable and is seen as a life long chronic illness but unlike other chronic  illnesses it is very treatable resulting in long term remission.

    Good reliable information is important so do check out Lymphoma Action a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups a great Lymphoma Buddy Service and Lymphoma support line.

    The link below is from the LA site and it is a comprehensive list of questions to ask your medical team.

     https://lymphoma-action.org.uk/about-lymphoma-tests-diagnosis-and-staging-your-medical-team/questions-ask-your-medical-team

    I have said enough, but always around to chat and help as best as I can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hello Mike and thank you for the comprehensive reply. I'll check the list of questions, and now that I know which lymphoma it likely is, I can dig a bit more deeply for information if it becomes necessary. 

    By the way, your Nelson Mandela quote reminded me of this one from Robert A Heinlein: "Always listen to experts. They'll tell you what can't be done, and why. Then do it."

    Slight smile