Hi everyone I have had my consultation with a different specialist at the Northern Centre for Cancer Care regarding above. The meeting went well My family and I were given 1.5 hours to discuss and help clarify my clinical position and ongoing consultation needs following the previous 2 meetings with one of the centres CLL specialists which had gone badly wrong for me cited in my previous postings.
Clinically I am still at stage A indolent/non aggressive CLL/ SLL. The reason for considering early intervention with chemo is due to the fact that the trajectory of my bloods wbc 111 Hg 11.7 and platelets 104 suggests that I may becoming anaemiac and may have problems with blood clotting etc in the future. Under these circumstances my bone marrow would be struggling to keep me fit and well despite the fact I am fit and well at present. The analogy of a garden was given the unhealthy cells the weeds wbc may begin to stop my bone marrow from growing healthy ones the flowers rbc. But I am not there yet.
I asked have I moved from may never need treatment to will need treatment and was told not yet just more likely than we first thought but it is nothing to do with your cancer becoming active or aggressive.
With regard to future consultations I will never need to meet up with the doctor who disclosed these uncertainties to me too soon and without no other explanation than you may be becoming anaemiac. I am not anaemiac yet, I will get testing to rule out any reasons other the CLL for anaemia but they do know it is not due to B12 deficiencies now.
I will also get prognostic testing for suitability for chemo etc if and when the need arises and will be included in and treatment decision making process.
It seems the doctor I have seen did speak her thoughts out loud to soon and without certainty. She also failed to provide justifiable reasons at both sessions thereby riasing my anxieties to early and hopefully unnecessarily. we have agreed I will not see here again and any consultations with my new doctor will be monitored to repair my trust and confidence in the team.
However they have been raised and it seems it may be necessary for me to have chemo in the future maybe even in the next year. On the brighter side I am informed my prognosis for suitability with a good outcome is good given what my blood monitoring has told them over the past 6 years And the fact I have coped without without treatment. Again not a certainty as prognostic testing is still required before treatment.
So guys still a lot of uncertainty around but looking more likely for me. For me now the way ahead seems to be to gather any information I can on treatments and to get an external second opinion. I will contact Prof. Hillman's secretary to guide me on the second opinion front. I have over the past 6 years watched read and save all the treatment videos from health unlocked on CLL. Unfortunately my computer crashed and my back up systemsaved only documents not videos.
Can anyone send me copies of up to date treatment videos/ advice and provide me with any comments on my current position as well as where to get second opinions should Prof Hillman be unable to help.