Recently a friend of mine was diagnosed with breast cancer. Her diagnosis is remarkably similar to my own: lobular, a large (4-5cm) tumour in one breast, hormone receptive.
She lives in the Netherlands while I am next door in Belgium.
And yet her treatment plan is radically different from mine.
When I was diagnosed, I thought that the only reason for giving chemo before surgery (neoadjuvant therapy) was to shrink the tumour and so make surgery easier in cases where lumpectomy was an option. So, when I was told that I would definitely need a mastectomy due to the size of my tumour, it seemed obvious that they would operate as soon as possible and give chemo later. My chemo is simply intended to mop up any stray cancer cells that might have escaped round my body.
So I was rather surprised to hear that my friend will also definitely need a mastectomy and yet will start with chemo before the operation. It turns out that there is another reason for neoadjuvant therapy - to keep an eye on whether the tumour is shrinking so that they can tell whether the chemo is working or not. In my case, my tumour has already been taken out so we don't have the faintest idea whether FEC-T has been effective or not. Presumably that is why they use a combination of drugs and prescribe a longer period of chemo....because they figure that some of it has to work eventually.
There doesn't seem to be any definitive research showing that one way is better than the other. But the interesting thing is that I didn't even know there was another way. There was no discussion of options when I went into the hospital. Perhaps this is a good thing because, truthfully, I'm not sure I could have coped with options in those terrible weeks and I probably needed someone to take charge and tell me what was going to happen.
But now we come to another difference in our treatment plans, where experts simply seem to disagree on what is the best option.
I was told that mastectomy with reconstructive surgery was not an option as I will need radiotherapy which causes too many problems with the new breast.
My friend in the Netherlands has been told that this is nonsense, with modern methods the radiotherapy will not cause any problems.
A quick Google seems to suggest that there are experts on both sides of this debate. And some experts that argue that even if the radiotherapy does damage the new implant, it still produces better cosmetic results to have reconstructive surgery at the same time as the mastectomy and then remove the 'cooked' implant later and replace it.
I can't help wondering if my oncologist should have explained to me that there were other options, even if they weren't offered at my particular hospital. Would I have switched hospital to benefit from reconstructive surgery at the same time as the mastectomy? Probably not. But now that the mastectomy is done, it's too late to even consider it. I understand that my experts have taken a particular view on this issue and there is evidence to support them. But if there is also considerable evidence on the other side of the argument, shouldn't they have been obliged to make sure I was aware of that?
I can't really regret the decisions that were made. Chemo before or chemo after - probably it doesn't matter. And, truthfully, I'm not sure that I will take the reconstruction road at all, and almost certainly wouldn't have risked problems with a fake breast that'd been over-radiated. I guess I just feel uncomfortable that they weren't my decisions.
On the other hand, a little Googling doesn't make me an oncologist. Is that the point, that I just have to put my trust in the man who has spent years studying this field and is now making these decisions on my behalf?
I suspect that might have been the best way in those crazy, early days when the diagnosis turned my brain to quivering jelly. But I think I will do my own research and ask more questions before any decisions are made on the next phase of my treatment. After all, he may be the expert... but it's my body.
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