Wednesday, 22 June 2011

Oncology visit

Well today I had my first appointment with the oncologist, after three months of waiting (only 6 weeks since diagnosis) today was finally here.  The folks at the cancer agency were all very fabulous!  Friendly and very respectful.  First came some very basic work, filling out forms, blood pressure temperature etc... then a medical intern came in as expected and checked me for swollen lymph nodes took some notes on my condition and went to get the oncologist.  He too gave me the once over and then started to let me know the options for treatment. There is a slight correction in my diagnosis what I have is as follows...
Follicular non-Hodgkin lymphoma (no change there) here is the different part, I have grade 1 which has to do with the maturity level of the cancer cells, grade 1 being early in development.  This was news to us; the next bit cleared up some questions I have been asking and have been asked by many of you.  I thought you said stage 1 and that meant only one lymph region was impacted but you said the CT scan showed multiple areas???  Yes both are correct, I have a couple of lymph areas impacted by the cancer one in my right groin and a second region in my centre abdomen.  So I have grade 1 stage 2 lymphoma with no strong symptoms and one more test coming next week that will confirm the phasing of the cancer, next week I get the pleasure of a bone marrow biopsy; yippee!!!
This test will let us know if my bone marrow also has been impacted, I am lead to expect a short uncomfortable procedure with about a minute of real strong discomfort; given my form of cancer there is a relatively strong chance that it will be there but either way it will not change the plan for treatment.

Speaking of treatment plan, here is how the discussion went (more or less) first option is chemo and at my current stage (2) and given my general health and fitness along with lifestyle the side effects are too severe for this to be a viable option at this time.  Second option is radiation treatment, this is what I was expecting to be told was our go protocol; unfortunately, because of the second cluster of nodes down the centre of my abdomen again the side effects would not justify the outcome since this would not cure the cancer only minimise it and the damage to my abdomen could be permanent radiation is also out for the time being.  So option three is my option. I call it the ticking bomb but officially it is called watch and wait... great I am tired of waiting and frustrated by the lack of any effective action.  Don't get me wrong I do understand the reasoning behind the direction but will need some time to digest it and get my head around it.
So the plan is a GP appointment tomorrow with a marrow biopsy next week and a follow-up oncologist appointment the following week.  To day the long-term plan is for regular quarterly follow-up appointments but not regular CT scans due to the radiation exposure so it will be regular blood work and monitoring how I feel (we all know how good I am with feelings).  It could flare-up in a few weeks, a few months or even 30 years or more before I "need" treatment; this is a normal practise and I am told and have read that the results of waiting are not any different than if it were treated in the early stages with the exception of only having to go through the physical illness once.
So for now I can dust off the bike pick-up the shovel and get back to my normalish life, sorry Jim no regular western afternoons here :-(
We will watch and wait and wait...

More to come as this soaks in.

Thanks for watching
:-)

3 comments:

  1. sorry to hear that there will be "no action", but good to hear that there is a decision and a plan. I'm always much better if I know the plan and know the why...
    thanks for sharing Don.

    ReplyDelete
  2. Hey Don, I read this as positive news! Despite the frustration of not actively hammering this cancer into submission, the upside is that the doctors have discovered the cancer cells very early AND they are aware that it is there AND you will get the very best attention. I think Marguerite nailed it... there is a decision and a plan. Thanks for keeping us posted.

    ReplyDelete
  3. Well, let's hope it's 30+ years before you need any treatment!
    Thanks for keeping everyone up to date this way!

    Thanks and keeping you in our thoughts

    Ken and Sue

    ReplyDelete