Looking forward to a “much more symmetrical overall shape”

At my latest meeting with the consultant plastic surgeon, we more or less concluded that if the various ongoing issues relating to my reconstructed boob resolve as well as she hopes over the coming months, there may well be no need for further surgery.

That would indeed be a result. Don’t take it personally, I said, but I’d be perfectly happy for you not to operate on me again. In fact, in the run-up to the appointment, I’d pretty much come round to thinking that, regardless of how things “resolve”, I’d really rather not have any surgery that’s not entirely medically necessary. I might change my mind, but that’s how I feel at the moment.

With the procedure I had, a DIEP flap reconstruction, the surgeon(s) build a new breast from skin and fat taken from your abdomen and transferred to your chest using complex microsurgery. In my case it was done immediately following my mastectomy, last December. It’s not usually a case of “one and done” (nice phrase); there is nearly always a later surgery to make adjustments.

Here’s the state of play. There’s swelling caused by lymphoedema in the right breast and right “flank”. (Flank? It makes me sound like a horse.) There are dents caused by skin tethering in a couple of places and there’s scar tissue where the lymph nodes were removed. The plastic surgeon and I compared how things are now with how they looked in the photos she took at our previous appointment at the beginning of March (It’s not over ’til it’s over). There are definite improvements on the tethering and scarring front, but things aren’t exactly a great match, if you get my drift. In the words of the consultant who’s managing the lymphoedema treatment I’m about to start – and I’m aware this might be too much information for some of you, but hey ho – the right breast is “elevated and very swollen”. Things even up a bit if I hold my right shoulder down and my left shoulder up, but you can’t exactly walk around like that all day, can you? Seriously though, when I’m dressed, you don’t notice the lopsidedness (or perhaps you do and people are just too polite to say).

Re the swelling, some of my more fitted tops are so tight across the chest on the right side that they’re pretty much unwearable. Add to the mix the god-awful bras (The least sexy washing line ever) that I still have to wear. These are so huge and cover so much flesh that if I wear anything more than the most modest of tops, I risk flashing what has to be the ugliest lingerie ever. All in all, my above-the-waist clothing options are currently rather limited.

This probably sounds a lot worse than it is. Even with the various issues, the reconstruction is amazing.

On 5th May, I’m starting an intensive course of lymphoedema treatment – daily one-hour sessions for 15 consecutive working days of a specialised, gentle type of skin massage or manipulation that’s aimed at reducing the swelling. It’s hoped this manual lymphatic drainage will lead to the tethering releasing and the dents filling out, to whatever degree; it might also help with the tight scar tissue. The ongoing physiotherapy I’m having should also help. If this all happens, the plastic surgeon reckons “the overall shape will be much more symmetrical and it is likely you won’t need any further surgery”. Yay!

And if things don’t resolve as well as we hope? Well, if the swelling goes and I’m still lopsided and dented, I could have two procedures, a lift on the left (yes, really) to make it match the new one on the right and fat grafting on the right to get rid of the dents. This latter procedure would involve taking fat tissue from my thighs or buttocks (either way, ouch) by liposuction, processing the tissue into liquid and injecting it into the reconstruction. And women have this done voluntarily?

If the swelling and dents don’t go? Let’s just wait and see.

On the breast lift front, I have to say I still feel much as I did when I was considering whether to have reconstruction in the first place (“Are you happy with the size?”), ie that I really don’t feel comfortable messing with the good one. I think I could live with them being less than a perfect match. If my various scars needed tidying up or there were lumps (of dead fat tissue) in the reconstruction that needed removing, I’m sure I’d be keener to go ahead with a Phase II. The scars have healed really well and there are no lumps in the reconstruction. So as things stand, I’m hoping I end with Phase I. That has to be a good result for the surgeons too, to have done such a good job in one go – a “one and done”.

It’s not just about appearance, though. How you feel about it emotionally is also massively important, as is how it feels physically and how you recover from the operation. The latter two points obviously influence the first. I’m kind of surprised that I’ve given over so many column inches on this blog to how it looks. It think it’s partly because my mind boggles at the complexity of the medical procedure and the skill of the operating surgeons. I look at it and think what an amazing piece of human engineering. Importantly, it’s also a reminder of how well my cancer treatment went (A busy week with welcome news – “no mass identified” and “no further surgery necessary”). Also, I remember just how good it looked in the weeks immediately after the operation; whatever my expectations were, they were far exceeded.

I’m very happy with things and don’t regret my decision to go down the reconstruction route. It was a tough choice (Decisions you never dreamt you’d have to make). There’s no sensation at all in the breast or nipple. This was always going to be the case, but it takes a lot of getting used to, believe me*. As for recovery, well four months on and – removing the lymphoedema from the equation – things are good. There’s still a slight ache inside where the breast meets my chest when I wake in the mornings but it soon goes away. I feel a pulling inside when I make certain movements, and that feels strange (that could be the cording, though, rather than have to do with the reconstruction or mastectomy).  The area surrounding the reconstruction is still a strange mix of tender, numb, tingly and achy. That all causes more or less constant low-level pain and discomfort and while it’s annoying, it’s bearable. That’s not to say I wouldn’t love it all to go away. Hopefully it will. It’s much better than it was.

Yesterday, I met the therapists who’ll be doing the MLD and had a bit of a taster session – I can’t wait to write about that! They seem confident they’ll get results. I next see the plastic surgeon in early July. We’ll see how things look – and feel – then.

*This lack of sensation – most of the nerves are cut during mastectomy and reconstruction and the area becomes numb – is very bizarre. When you touch the reconstruction with your own hand, it feels much like your other boob (at least it did before all the swelling). If someone else touches it – no sniggering now, we’re all adults! 😉 – you feel absolutely nothing. Now the following info is new to me and I just have to share. The nerves have the potential to regrow as the nerves in the flap that was transferred from your tummy regenerate within the chest. If sensation is going to come back, though, it’s likely to take a year or two. Interestingly, it seems that if you have no sensation in your breast, you may get feeling back in the area next to your breast. Now check this, folks, “some women find that the armpit next to the reconstructed breast becomes tremendously sensitive to touch and is a new erogenous zone”. Come back in a couple of years and I’ll let you know how it’s been for me.

Same run, but no tears this time

That’s two Saturdays in a row I’ve done the 5k Parkrun on Tooting Common here in south London. Last Saturday there were tears as I crossed the finish line; yesterday there weren’t.

I’d run 5k round the common once on my own (Passing the Velux window test and “running” 5k) since finishing seven months of treatment for breast cancer at the end of February. So as I set off last Saturday at 9am with around 250 other runners and with my husband Andy running beside me, I was confident I’d be fine. But I couldn’t hold back the tears as I crossed the finish line. I guess running the same route at the same time as all these other people – and knowing thousands others were doing exactly the same thing in Parkruns up and down the country – in some way made me feel I was back in the real world after having been in some sort of parallel universe since I was diagnosed last July. Andy – for the millionth time over these past months, it seems – provided a shoulder to cry on. Thanks also to our friend and neighbour Steve, who finished just before me and ended up with me crying on his shoulder too. Seconds later, I was fine again.

Yesterday there were no tears. I finished – two minutes faster than last week – with a smile and a feeling I was moving forward on the road towards my “new normal”, whatever that ends up being.

#iloveparkrun #keepitfree

Fear of lymphoedema

OK, so I’m worried I’ll develop lymphoedema at some point after my operation.

Now I’m willing to bet that most of you have never even heard of this “devastating disorder” and “dreaded complication” of breast cancer treatment. I’m not sure I had before my diagnosis, but I certainly have now. I’ve been told I have up to a 25% chance of developing the condition.

Any woman whose lymph nodes are affected by breast cancer treatment (ie through surgery or radiation) can get lymphoedema. It affects the arm on the side you had surgery. For me that’d be the right arm and I’m right-handed.

Patients with the condition can have “chronic, progressive swelling, pain, recurrent infections, and significantly decreased quality of life”. In most cases, lymphoedema develops slowly over time, and the swelling can range from mild to severe. It can develop at any time – even decades – after you’ve had breast cancer treatment; you can’t predict who’ll get it; it’s not clear if it can be prevented; and, once you’ve got it, it can be managed but it can’t be cured. It’s been said that it’s “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment”.

There are lots of precautions you’re advised to take that might lower your risk of developing lymphoedema or delay its onset, or reduce its impact once you’ve got it. Note that it’s might, not will. No wonder women worry about it. In medical speak: “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” As lymphoedema can develop years after treatment, it’s suggested you take the precautions FOR THE REST OF YOUR LIFE. It’s known that certain things definitely increase your risk, including putting too much strain on your arm too early, infection in a cut or graze and insect bites. So you’re advised to:

• not use your arm for anything heavy until you are told you can.
• wear gloves for gardening and washing up.
• use an electric razor rather than a manual one if you shave under your arms.
• take particular care with any cuts or scratches you get on your arm, however small. If you see any redness or swelling around the cuts or scratches, you’ve to see your GP straight away as you may need antibiotics.

There’s more. For example, use nail clippers rather than scissors and don’t push your cuticles back (does that mean no more salon manicures?); avoid anything that increases the temperature of your skin, such as hot tubs, saunas, steam rooms (not that I ever went to that many, but I guess that means goodbye spas); and use insect repellent (what, even in south London?). You’re also advised never again to have injections in the arm on the side you had surgery. Same goes for having your blood pressure taken and for having blood taken. There’s lots more, but I’m sure you get the picture.

And that’s all just to stop you getting it. You don’t want to hear about what you have to do to manage it if you do in fact get it.

And what about exercise? Well wouldn’t you know, more uncertainty.  There are risks to both exercising and not exercising. I’ll definitely be exercising, but where does that leave my beloved tennis and skiing? At this stage, I just don’t know.

Let’s take tennis. You can begin to go back to the activities you did before your surgery about four to six weeks after surgery or radiation, ie once you are fully healed. That for me, assuming all goes well, would be some time in April. However, you’ve to take care not to over-tire your shoulder and arm and you’ve to avoid “vigorous, repeated activities”. Isn’t that pretty much what tennis is? As for skiing, well lymphoedema can develop even decades after surgery “after seemingly trivial trauma”. Now I’m a pretty good skier, but I still fall (someone once told me if you don’t fall, you’re not trying hard enough!). There’s no way of guaranteeing I won’t fall on my right-hand side. So does that mean I stop going skiing? Or that I go but stick to beginners’ slopes? As I said, at this stage I just don’t know.

Medical advances will result in fewer women getting lymphoedema in the future. But this is now, so I guess I’ll just have to be careful and hope for the best. I’m sure a lot of the precautions eventually become second nature and that, as long as you can keep the condition at bay, taking them won’t seem the big deal it seems now. I really would like to still be able to play tennis and ski, though. Keep your fingers crossed for me.

I accept I’m perhaps worrying too much over this, and that perhaps I’ve transferred a lot of my anxiety over this whole breast cancer thing into a fear of developing lymphoedema. That said, up to 30% of women who have the surgical procedure I’m having – axillary lymph node dissection or axillary clearance –  do develop the condition. That’s quite a high percentage, is it not?