I would like to start by saying that everyone has been amazing and I am genuinely bowled over by the responses to my blog. I have had so many nice posts and couldn’t reply to everyone even if I wanted to. Thank you.
I have also had one person who was going through something similar say the blog has helped them. To me that’s a real win. I’ve also had people as far away as Ghana and Cuba reading it (too many travelling friends). Feel free to put it out to anyone you think might be interested.
I went to see the Professor again on Wednesday July 10th at 9am. Just to mix things up a bit I got a white americano before I went in instead of a chai latte. You don’t want to get typecast. He was running about 15 minutes late but at 9am in the morning the appointment room is a lot quieter, which was relaxing.
He ushered us into the consultation room once more and then we had a chat for about an hour, with a lot more information for us on the diagnosis. We discussed treatment options, prognosis and whether I should continue running. I think I might summarise briefly and then go into the interesting bits.
He showed me the CT pictures of my body. Fascinating! They carved up the pictures into segments and you could see all of my organs. The really good news is that other than my blood, bone marrow and spleen, the lymphoma hadn’t spread to any other organs yet, a bit of a win. It was also funny because for the first ten pictures there was a black circular hole leading up from my buttocks. I thought it was… you know the centre of the bottom… but it turned out it was my spine. That could have been an embarrassing if I hadn’t worked out what it was before asking…
One thing he did say was that my lungs are really big, possibly from all my endurance running. This is why I noticed my spleen was hurting when really it shouldn’t be discernible yet, as my lungs push into it more. He said it may have been another 5 years until I was diagnosed if it hadn’t been for that and the tiredness. I was in two minds about this. Which is better, to know sooner or , on the other hand, have 5 more years of ignorance? Still you can’t put the genie back in the bottle.
I may have had he condition for years already and not known about it. If so, and if it progresses in an orderly fashion there is no benefit to getting chemotherapy at this stage as prognosis is the same whenever you treat it.
The really good news it the median watch and wait time before chemotherapy for this condition is 7-10 years. That said some people need treatment after a year, but equally others can wait as long as 15 years (where do I sign?). You can see exactly what I mean from this short piece by Stephen Jay Gould which I found helpful (thanks Aaron). http://cancerguide.org/median_not_msg.html
Chemotherapy can then put the lymphoma into remission (80-90% or so of the time) for 5-10 years. Unfortunately then it can come back and be immune to chemotherapy so there is a real benefit in waiting and seeing because then you start the process that bit later.
Finally there is always the option of bone marrow transplants (I’m blood type A negative if anyone is game) but that’s much further down the line.
So taking chemotherapy off the table I have two options. Watch and wait or have a splenectomy (taking out my spleen.) I suspect many of you don’t know what a spleen does (I certainly didn’t), so…
‘it acts primarily as a blood filter—so it is possible to remove the spleen without jeopardizing life. The spleen plays important roles in regard to red blood cells and the immune system. It removes old red blood cells and holds a reserve of blood in case of hemorrhagic shock and also recycles iron. It also protects against certain infections.’
There are three benefits to removing my spleen.
1) It may slow the disease (there is no hard evidence on this but it is possible that this could slow growth).
2) It would stop my spleen hurting. As it grows it will hurt more and more so at some point this is likely to happen.
3) They could then tell exactly what the condition is by cutting up the spleen (at the moment they are 98% sure it is Splenic Lymphoma, but it could be another lymphoma, although treatment would be the same).
On the other hand there are three downsides.
1) Any operation has an inherent risk.
2) I would have to take antibiotics every day for the rest of my life. (note to self, check if allergic to antibiotics…)
3) I would be more prone to major infections like salmonella and Pneumonia
So, as you can see it’s a bit of a tough decision. The Professor suggested we watch and wait but also pointed out that a splenectomy was a real option but that it was entirely my decision. So I am going to have a think about it over the next three months until my next appointment and make the call.
It’s weird being asked to make decisions like this as
So anyway, that’s what we left it as. It’s up to me. I have to decide if I want my spleen (which I have taken to affectionately calling the blob) ‘to stay or to go’. I’ll keep you posted on how I get on with the decision, who knows, maybe we can have a poll on what people think….