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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