Hello All (and hello again Highlander.) My diagnosis was the result of an accidental finding while they were digging for what they thought was a completely different cancer. Pathology report identified it as a low grade lymphoma and at first they thought it was follicular.
First appointment with the haematologist was annoying, as she kept avoiding and challenging my questions, ("why do you want to know?" "why is this important?") and told me she couldn't be sure what type of lymphoma it was, had no idea what stage it was, and wasn't even able to tell me if they had found it inside a lymph node or in the surrounding tissue.
I raised hell, and the second appointment was a little better. Current diagnosis is extranodal marginal zone lymphoma. It was only ever found in one area so designated stage 1E, and according to the haematologist has an even lesser chance of transforming than the previous diagnosis of follicular. I would like to think that this is going to stay dormant for years, but obviously there is no way to know.
The whole thing feels a little weird. I am at the moment also dealing with breast cancer, but that one is something I am able to sink my teeth into and I know exactly what I am dealing with. With the lymphoma, it's like trying to shake hands with a hologram.
Hi again , you have definitely had an ‘adventure’ navigating a diagnosis but as I have said before, at times Heamatology is not that straightforward with me being told my ‘type’ was different a few times.
Unlike solid tumour cancers like your BC, blood cancers can’t be cut out…… and like my type, now in remission, its just asleep and could wake up again anytime.
I am fortunate that I have had 22 years to get a handle on this and have developed a way of pigeonholing the various facets of living with my invisible friend.
It’s all about understanding the condition and then not letting the Lymphoma diagnosis define you and your life. More controlling how much you allow ‘it’ to invade your life.
As always you will get great information on the Lymphoma Action website and you may also want to consider their Lymphoma Buddy Service where they can match you up with someone who is living with the same ’type’ as you so you can pick their brains.
((Hugs))
Trust is important as this builds confidence and sometimes decisions like this needs to be taken. Have a word with the nurse and talk it through.
I have to say that the Consultant Dermatologist I had for 14 years then I moved onto my Consultant Haematologist and Consultant Stem Cell Transplant consultants for 4 years (all 3 head of departments) were all the most frustrating, obnoxious, matter of fact, poor communicators, talked down a people……… and a few other words I can’t use on the community as the system will flag them 
……….. but they all knew their stuff and combined to save my life.
We had to quickly quickly set ‘our’ expectations with regards to communication, manners and professionalism and it worked.
Our various Specialist Cancer Nurses thought we had been very brave but were impressed that the consultants accepted our view and did step up to our expectations……. did to help change them for others - I am not sure 
I remember you telling that story, Mike. 
Made me smile then, makes me smile now. The fuss I made after the first appointment did make a difference, but not enough for me to feel I can work with that woman if things go downhill. I certainly have no time to sit in her office and listen to explanations I don't need while having a hard time getting her to answer questions I do need to know about. I wish my breast cancer oncologist could do haematology too. He meets me where I am, so to speak, rather than try to force me to meet him where he is, and in spite of the mis-diagnosis at the start of that course, he is someone I feel I can trust, partly because in over a year of treatment and frequent face to face appointment, he never tried to hide anything from me that I know about.
