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.

Just putting this out there

I recently came across the results of a survey about how women feel in the aftermath of their breast cancer treatment. Of those that responded:

  • 48% reported feeling low or depressed
  • 60% said they needed support to manage worries about recurrence
  • 39% felt isolated by the ongoing side effects of treatment
  • 61% felt those around them expect them to move on before they were ready.

I don’t know how scientific the survey was but, based on my own experience and the experiences of many of the women I’ve spoken to or come across, I’m surprised some of the figures aren’t higher.

Just putting this out there on this lovely sunny Spring morning.

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 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. My husband 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

Side effects you really don’t want to think about (Radiotherapy Part 3)

I know it’s seven weeks since I finished my course of radiotherapy but I really feel I need to get this off my chest. The potential long-term side effects of breast cancer radiotherapy are something else. There, I’ve said it.

At my first appointment with her, the consultant oncologist in charge of my radiotherapy explained why this treatment was being recommended for me. She talked me through the proposed treatment plan, the practicalities involved in planning treatment and the treatment itself, and, of course, the potential short- and long-term side effects. She then offered me a consent form for signing… or not. I did ask if people refused treatment. Yes, the consultant replied, but not in cases such as yours where radiotherapy has such a clear benefit in terms of reducing the risk of recurrence and improving overall prognosis. There was never any doubt that I would sign.

As with other breast cancer treatments I’ve had – chemo, surgery – or am continuing to have – hormone therapy – radiotherapy has lots of potential nasty side effects. Some are immediate, and some are more long-term and can occur months or years after treatment. If you’re familiar with this blog, you’ll be aware of some of the short-term ones: skin redness, tiredness, swelling and tenderness of the reconstructed breast, swelling from fluid build-up in the treated area, etc. The potential longer-term side effects are much scarier. That said, they’re less likely – in some cases much less likely – to occur than the short-term ones. They include shrinkage and firmness of the reconstructed breast, increased risk of second malignancy, rib fracture, lung scarring and a 10-15% risk of lymphoedema.

Let’s go through them. Around one in ten women who have radiotherapy following reconstruction experience shrinkage and hardening months or years after treatment. What a nightmare that must be. I agonised over whether to have a reconstruction or not and in the end decided to go ahead with one that involved transplanting abdominal fat and required major surgery. It was a massive deal. Nearly four months on, there are some “issues”, but it looks like the result will be good in the end. You really don’t want to wake up one day in five years’ time to find it’s shrunk and feels like concrete. The plastic surgeons, too, must hate seeing what radiotherapy does to their lovely artwork. It’s no wonder then that “with a view to improving cosmetic outcomes“, clinical trials are under way to determine whether it’s safe to do things the other way round, ie to give radiotherapy before surgery.

As for the other potential long-term side effects, well everyone knows radiation can cause cancer as well as treat it, so the warning about a “minimal risk of second malignancy” was no surprise. But rib fracture? And lung scarring? Well it seems a rare potential late side effect of radiotherapy to the breast is “weakening of the underlying ribs on the treated side“, which may “increase the risk of a fracture in later years”. I’d better be extra careful when I go skiing.

An equally rare or even rarer side effect than rib fracture is lung scarring, aka pulmonary fibrosis, which can result in serious breathing problems (guess there wouldn’t be much skiing at all then). If you’re having radiotherapy to the breast and chest wall, it’s impossible to avoid the lung. The reason I had to hold my breath during treatment was to lift the treatment area away from the lung and so minimise exposure.

Finally, with regard to lymphoedema, well I was already at risk of that anyway as a result of having had the axillary lymph nodes removed during surgery. And yes, I have developed it, in and around the breast area, but I’m hoping it can be resolved, to some extent at least.

So what else do I need to look out for now that I’ve had radiotherapy? Well, swelling caused by treatment can persist for months or even years. Also, irradiated skin may burn more easily from sun exposure and be prone to infection and breakdown, so you need to be extra careful in the sun. And here’s a nice one to finish. Breasts that have been irradiated may not grow or shrink in size as much as untreated breasts, or indeed at all. Radiotherapy seemingly freezes own-tissue reconstructions at the size they were before radiation treatment. Again, this is pretty annoying as one of the benefits of this type of reconstruction over an implant is that the new boob changes with you as you gain or lose weight. One of the main causes of asymmetry between the “treated” and “untreated” breast is, apparently, weight gain. While that’s a clear incentive to keep to a steady weight, it’s not much consolation to those women who put on weight as a result of the hormone treatment they may end up taking for as long as ten years after they’ve had chemo, surgery and radiation (or combination thereof) in an effort to guard against the cancer coming back.

I’m aware I’m not doing a very good job here of “selling” radiotherapy. Radiation treatment reduces the risk of recurrence and that is, of course, the main concern. But it doesn’t half add to the baggage that comes with having or having had breast cancer.

 

Starting to feel free again

The consultants who’ve essentially been in control of my life for the past seven months have done what they needed to do in terms of treating me and are now starting to sign me off. I’m beginning to feel independent again. It’s a good feeling.

I was at the clinic this past Monday for physio but before that I hadn’t been there for a whole two weeks. A fortnight is not so long in the broader scheme of things, but I don’t think I’d had such a long period without an appointment or treatment related to my breast cancer since July last year.

I also saw the consultant breast surgeon this week for a three-month follow-up so I did in fact have two appointments this week. Nonetheless, I no longer feel I’m tied to the place.

People are warned that they may feel abandoned when their hospital-based treatment (chemotherapy, surgery and radiotherapy) finishes as they’ve got used to all the appointments and treatment and to having people caring for them. I haven’t any sense of abandonment – yet? – perhaps because for me there was no sudden end to things. Most people walk out of their final radiotherapy session and that’s it, but not me. I finished radiotherapy on the last Friday in February (“…3, 2, 1 and relax. Congratulations!”) but was back almost every day the following week (It’s not over ’til it’s over) as I’d had a bad skin reaction to treatment and was having the dressings changed on an almost daily basis. And there have been plenty of other appointments since then.

I’m still having physiotherapy on my operated side and there will be various other appointments over the next few weeks and months, but it’s good that things are tailing off. Feeling free again has its own challenges but, grateful as I am to everyone who’s been and who continues to be involved in my treatment and care, I can safely say I’m happy finally to feel no longer tethered to what has sometimes over the past seven months felt like a second home.

 

 

 

 

 

Post-op progress report No 4: Passing the Velux window test and “running” 5k

I’m delighted to report two massive achievements in terms of my physical recovery from my operation and more broadly from my breast cancer treatment in general.

Firstly, on a beautiful, sunny Spring morning a little over a week ago, I managed to open the Velux window in our bedroom in the loft for the first time since my surgery last December. Secondly, just this morning, I ran five kilometres round Tooting Common. This was the first time I’d been out running since finishing chemo last November (and even then I’d only really gone running two or three times since starting chemo in August).

If someone had told me a year ago that I’d get excited about something as trivial as opening a window, I’d have said they were having a laugh. But here we are. We didn’t know then that I’d be recovering now from six months of breast cancer treatment that involved chemotherapy, major surgery (a mastectomy, full lymph node clearance and immediate reconstruction using blood vessels and tissue from my abdomen) and radiotherapy. We also wouldn’t have known that I’d develop something called “cording” in my right arm following surgery that would mean I was simply unable to grasp anything tightly with my right hand or indeed to straighten my arm and exert any level of pressure. This time last year I hadn’t even heard of cording.

Anyway, the fact is that I’d tried and failed to open the Velux window on many occasions since my operation three-and-a-half months ago, on 19th December, so I was delighted when I finally managed it the week before last. It hurt but I’d done it. It meant the cording was loosening up. It still hurts to do it now, but it’s easier every time.

As for my jaunt round the common today, it was very slow but I think it just about qualifies as running*. I’d asked the plastic and reconstructive surgeon at my most recent appointment with her whether I could start running again. She’d said yes so I kind of felt I had to get out there and put my money where my mouth was before I meet her again, on 12th April, for my next six-weekly review. Also, the Saturday morning 5k running phenomenon that is Parkrun has come to Tooting Common and I’ve been gearing myself up to do that. The plastic surgeon had said to double up on the upholstery front if I did go running (It’s not over ’til it’s over) so, this morning, supported by the Sweaty Betty crop top that I bought for my sailing trip across the Atlantic at the end of 2014 (What a difference a year makes) and a sports bra, I set off.

When I look back on those first few days and weeks after the operation when I could hardly move (Post-op progress report No 1: Biting off more than I can chew), I find myself totally in awe of the capacity of the human body to repair itself. (Yes, I know the human body is equally “good” at destroying itself but we’ll set that aside for the moment.)

I knew I was getting stronger as I’d caught myself running up the stairs in the house a few times in recent days. That’s how I went up the stairs as a matter of course before I started treatment but at some point towards the end of chemo, I’d started walking instead. I’d also at some stage gone back to getting out of bed the right way without thinking about it but I’ve gone backwards somewhat on that front recently. The swelling and tenderness in and around the breast area (Breast cancer “reminders”) means that when I wake up now I have to work out which way to move that will cause least discomfort. Also, I have to confess that I’m already stiffening up after my run and am feeling a like an old lady sitting here on the sofa. All in all, though, I’d have to say things are looking up.

*To illustrate just how slowly I ran, I should tell  you that Andy, not the world’s fastest runner, accompanied me round the common and said he’d to make a real effort to keep down (is that the opposite of keep up?) with me!