Yesterday I went for my second opinion at The Macmillan Cancer Centre in Euston Square. The first thing that struck me was how different it was to St Barts! It was much swankier, with new technology everywhere and a very modern fit out. The ceilings were high and the architectural pieces were all well thought out and in keeping with the modern feel. The appointments were even shown on screen dotted around the room, with a beep occurring every time one was updated. There was a costa inside (like Scrubs and Coffee Bucks, if anyone remembers that, only less free muffins!)
Contrasting this with the slightly shabby looking but efficient Barts, I booked into my appointment for 11:30 and sat down to wait.
And wait some more.
In the end I had to wait an hour and 45 minutes to be seen. I pointed out to Jo that being that late for a meeting with a client was unacceptable in any other line of business. She responded by saying that whilst this is the case, the Doctors couldn’t cut short meetings with people who were emotionally troubled by their diagnosis, or indeed if they had a premium on time. I took her point, but still, the wait was boring and I felt it was my British duty to complain! J
I sat down with the Doctor at 1:15. He mentioned he had seen the results of the tests and had come to the same conclusion as the Prof. Whilst there were a number of similar things it could be, most were ruled out by one type of result or another. I also had a spike in a Para protein which was consistent with Splenic Marginal Zone Lymphoma, meaning that because all of the white cells I have (far too many, want to borrow some?) were clones they all produced the same Para proteins, and this was raised. He also said that in medicine 98% accuracy was a very good indicator as no two bodies respond exactly the same.
I asked him the same things as the Prof and got similar answers. He varied a couple of times but not by much. We did talk about other patients he had with this condition. He said he had personally not seen anyone younger than 40 with it. Even so these patients at 40 could still expect 10-15 years without intervention, unless the cancer became higher grade. I asked how this would happen, apparently it’s just completely random, so on the plus side he didn’t tell me to steer clear of flying or anything (see https://spleniclymphoma.com/2013/07/01/the-not-so-small-cat-scan/ and radiation from flying). Still good news that most of the younger people he saw had about 10-20 years before chemo. Interestingly he mentioned that because most people get Splenic Marginal Zone Lymphoma at 65 they tend to die of something else before it kills them. On the other hand if they didn’t they could live as long as 30 years with it (Which would place them at 95….) and is well within my ball park of getting to 60.
The other interesting chat we had was about the spleen. He was initially slightly more pro spleenectomy because of my running and jarring of the spleen and how it affected my routine. However when we discussed travel and I mentioned our trip to India and other parts of Asia in the next year he suddenly got a lot keener for me to keep it in until the discomfort got too much to bear. His conclusion was that he would be much more worried about malaria and other infections if I didn’t have a spleen, especially in places like India with its very populated cities and hot climate.
So this was also food for thought, especially as he had begun by saying whip it out if it stops you exercising.
I will come to my decision over the weekend and blog it next week in a shock, hold the press issue. Don’t go anywhere! J
George Samuel said:
Your courage and good-humour in the way you’re approaching this is nothing short of fantastic.
When I recently found out about your condition, curiosity and ignorance prompted me to Google it and I surprised how little information there was out there. This blog is a great thing and will no doubt provide 1000s of people out there, whether directly or indirectly affected by this condition, with a reservoir of information, where there might currently be unawareness.
I’m glad you seem to be in good spirits and have managed to retain your positive outlook!
I know I’m but one of 100s of well-wishers and realistically there is little I can do, but if there ever was anything (short of cold calling for your business! :p ) you know where I am.
George (and the Samuel family)
ps: Regarding your spleen I wouldn’t want to advise you on the best course of action when not knowing all the facts and nuances of your situation. I guess the most compelling arguments seem to be that it’s removal might potentially slow the illness down and prevent any discomfort when exercising, but on the other hand, I know how much you love to travel and I guess there’s a degree of risk when you visit foreign climes. I’m sure, given time and a chance to reflect and weigh up the pros and cons, you’ll come to the right decision for you.
I stumbled across your blog in what seems to be my never ending search for information on splenic marginal zone lymphoma. I was recently diagnosed and like you, was devastated and confused as to how someone as healthy as I could have this disease.
As you contemplate your options, I wanted to ask if any of your doctors have offered rituximab as a form of treatment. See below link.
I have seen several doctors in New York, and all agreed that this highly effective drug in Non Hodgkins Lymphoma should be the first line of treatment once watch & wait fails. Of course splenectomy could always be an option down the road, if necessary. It’s definitely worth a conversation.
It sounds like you have a lot of living to do, so take the time to get second and third opinions. Fortunately the low grade, indolent nature of this disease allows time to do your homework. I wish you all the best and have enjoyed your blog.