Breast Reconstruction: It's OK To Say No

Now that the active part of my breast cancer treatment is finished and my mastectomy scar has healed, several friends have asked when I will start reconstruction of my breast. 

I shrug and tell them that I will meet the surgeon in due course and explore options.  But I'm not in a hurry because I don't think I will follow that route.  I think I will leave my lopsided, scarred chest exactly the way it is.

I've been surprised by how shocked many people are by this response.  It seems that most of my friends didn't even think about whether I would undergo reconstruction.  They try and reassure me, thinking that I'm either afraid of the surgery itself or worried that the end result will not be what I'd hope.  Give her a bit of time, they seem to be thinking, and then she'll see sense. 

But I've had time to think about this.  Yes, I am afraid that the surgery would be a long and painful process.  Yes, I do worry about the end result because it will never be quite the way was before.  But this isn't just a negative 'I can't face any more procedures' kind of response - even if I could wave a wand and have my old breast back I might have to think about it (I have mixed views about breasts these days).  I completely respect women who decide that reconstruction is for them, but I also worry that society and the medical profession have a tendency to simply assume that reconstruction is just the next, inevitable step in the process of treating cancer. 

From my point of view, I am now as healthy as medicine can make me.  Surgery will not affect my chances of cancer recurring one way or the other and my scar has healed up nicely and doesn't need any medical intervention for health reasons.  So why would I undergo more surgery?

To be comfortable in public?  I can understand that a silicon prosthesis might simply not be a practical solution for larger breasted women: it can be heavy and uncomfortable and it's never going to offer a cleavage.  But for me, an A-cup girl, it works really well.  I have the best fitting bra I have ever had, it's comfortable and gives me a great shape and I never had a cleavage anyway.  I admit that it's a fairly solid bra so it limits evening dress a bit but I can live with that.  Even my swimming costume looks good.

So should I do it for my husband?  Well, maybe if he was seriously disturbed by my new shape and didn't find me attractive any more I'd have to give it more thought.  No doubt, if you ask him, he might confess that he'd prefer my old body.  But we're both getting a bit saggy and baggy and padded round the edges in middle age - I'd rather he still had the body he had ten or twenty years ago too but that's okay.  Our scars and extra baggage are reminders of the life we have shared together and that's not a bad thing.

And what about my kids?  We're pretty relaxed about nakedness in my immediate family so inevitably the kids have walked in on me coming out the shower and seen my new shape.  They've got used to it and don't really care one way or the other.  And I can't help feeling that it is a good message for my pre-teen daughter: yes, my body is not conventional but I'm comfortable in it and that's just fine.

So that just leaves me to strip away everything else and take a good long look at myself at the mirror.  I have to ask honestly, am I really happy with the way I look?  Can I live with the scars or will I always feel uncomfortable, however well I disguise them?  For some of us, the answer will be no.  And to them I say, that's just fine - surgery is, I hear, really great and will result in a shape that you can be proud of and enjoy.  Go for it! 

But for others, like me, we'll think we look just fine the way we are.  I don't mind looking in the mirror and seeing my scar.  More than that, I'm proud of it.  It marks a journey that I have made.  When I look at the space where my breast once was, I don't see that I am less, I am reminded that I have learnt more about what matters in my life and the blessings that I had all along but didn't always recognise.  

When the time comes, I will meet the surgeon, get all the information and make a final decision.  But I doubt she'll change my mind and I'm happy that I'm making a good, positive, informed choice for me.

So don't ask me when I will start reconstruction - ask me whether I will reconstruct.  There are good, positive reasons for either answer.  The most important thing is that society and the medical profession remembers that this is the question that needs to be asked first.

Same diagnosis...different treatment plan

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.