A good news update

Now this is the kind of update I like to post. Yesterday’s re-excision went really well; they managed to close the new wound on my right calf directly so I got away without having to have a skin graft. Now that is what I call a result.

This second procedure involved as a precautionary measure cutting out a chunk of healthy skin and tissue from around the site of the original, very early-stage melanoma that I had removed at the end of August (Melanoma? You’ve got to be kidding). The margin of healthy tissue around the cancer that we got first time round fell short of that recommended in the treatment guidelines for melanoma and so a second re-excision was needed. A skin graft had been on the cards since I was told in early September that I might need a re-excision. It was later confirmed this would be the case (Bish, bash, bosh? No such luck). However, I got an email just last week saying the plastic surgeon would in fact try and close the wound directly and would only do a skin graft if that didn’t work.

I knew there were no guarantees. Having heard that, however, it was impossible not to get my hopes up. I was marked up before surgery to have the donor skin taken from my outer right thigh in case a graft were needed (the photo on the left shows the arrow pointing to the donor site) and it was pretty weird going under the anaesthetic not knowing what the outcome would be. I’m delighted to say the non-graft option worked. Twenty-four hours later, I’m sitting here at home on the sofa with my leg up feeling very relieved and happy.

I was told the good news as soon as I came to after the op; I don’t know whether I’d already started moving my hand down to feel my right thigh to find out for myself or whether I did that as I heard! You’re a bit groggy when you first wake up but I’m pretty sure the person who told me said the wound “closed beautifully” – although later, as he was warning me that I had to take it really easy for a while to give the wound a good chance of healing well, the plastic surgeon said it was “tight”. I’m taking no chances. Rest has been ordered and rest is what I’ll do. I see the surgeon in a week’s time and he’ll check the wound. In the meantime, I’ve to keep the dressing dry, so no showers but I can have a bath with my leg hanging over the side. I can do that.

So, I’ve been spared a skin graft. It doesn’t sound much and I know a great many people have far more serious things in their own lives to worry about. But it’s like a weight’s been lifted from me. I feel like I’ve been given a bit of a break after what’s been a stressful few months – which included, mind you, the very welcome distraction of a fortnight’s holiday in Cambodia. It sounds ungrateful but if I’m honest, with this hanging over me, I was ambivalent about going right up until I left. It was, of course, amazing. A massive thanks to Peter, my brother, for the company and for sharing the adventure.

I know that if there are problems with healing, we may still have to go down the skin graft route, but this is a good position to be in. I’m trying – not very successfully, it has to be said – not to look too far ahead, but here’s to a speedy and successful recovery.

A funny thing happened in the hospital. There I was, lying on the bed in my 1st-floor room before surgery, when I heard some strange noises outside, seemingly very close.  I turned my head… to find a window cleaner hard at work! We had a nice little chat through the glass. He said how cold it was; I asked if I could take his photo as this was one of the most amusing things that had happened to me. His unexpected visit certainly took some of the pre-surgery tension away.

Another thing, the anti-DVT stockings you have to wear after surgery were white when I was last here. They’re green now but they’re as unflattering as ever. It seems longer but it’s only two years since I had major breast cancer surgery at this same hospital. I had to sport the white stockings for quite some time afterwards (The least sexy washing line ever). Now I wasn’t planning on ending this upbeat post on a morose note but I have to say I really hope I never get to find out if those stockings change colour again.

On with the healing.

Defying gravity – well, one of them is

I need to say at the outset that this seems such a crazy thing to be writing about. I never thought in a million years that I’d be considering having a breast lift. On just one side. You are allowed to laugh. Believe me, I have, lots. That in itself, I guess, is something to be thankful for.

OK, background first. After finishing four months of chemotherapy for breast cancer, I had a right-side mastectomy last December followed by an immediate “own-tissue” reconstruction known as a DIEP flap reconstruction. This is a major operation involving complex microsurgery in which skin and fat is taken from your abdominal area and used to build a natural-looking breast after mastectomy.

A key benefit of an own-tissue, or autologous, reconstruction over an implant is that it changes with the rest of your body – in particular your healthy breast – as you gain or lose weight and as you get older.

At least that’s the idea, but here’s the rub. It seems that the radiotherapy I had after surgery to reduce the risk of my cancer coming back has robbed the reconstruction of at least some of the elasticity it otherwise would have had. Don’t get me wrong, I’m really happy with it and it looks great. Don’t just take my word for it. I had an ultrasound scan on it recently and the doctor performing the procedure remarked admiringly as she rolled the probe over it that it looked “just like a real breast”. I almost said “Thanks” but stopped myself. After all, the credit’s not mine. The doctor asked who’d done it and we agreed they’d done an amazing job.

It does indeed look “real”, but the radiotherapy damage means it may not change very much from here on in. I met with the consultant plastic surgeon earlier this month, three months after our previous appointment, and she said what I’d already pretty much worked out for myself, that the symmetry that we hoped would come with time (Looking forward to a “much more symmetrical overall shape”) was not now going to happen… at least not without surgical intervention.

Things have undoubtedly continued to improve since I last saw the surgeon. The skin tethering of around an inch long down the right-hand side of the reconstruction and the scar tissue where the underarm lymph nodes were removed are less pronounced. And there’s very little – if any – swelling left in the reconstruction. But I’m pretty lopsided. And let’s face it, that’s only going to get worse. I’m 53 and I breast-fed my two children. The reconstruction may be defying gravity but the real boob on the left is most certainly not!

I wrote back in April about the potential side effects of radiotherapy on reconstructed breasts (Side effects you really don’t want to think about) so I can’t say I didn’t know this could happen.

I’m quite conflicted about the whole thing. I know I said before that I could live with less than a perfect match. The practical side of me knows the main thing was getting rid of my breast cancer and that there’s more to life than having symmetrical boobs. There’s no denying, however, that it would be nice to be matching once again. Also, the inquisitive side of me would love to see what is in fact possible. As I said to the plastic surgeon, one part of me says why bother doing anything at all, but another part of me is tempted to give you free rein to do whatever you think would be appropriate. That would be a lift on the left and some fat grafting on the right, with fat taken from my hips, to try and even out the area on the reconstruction with the tethering and the scar tissue nearer my underarm.

The pull to be like you were before is quite strong. I know that sounds strange coming from me, given that I really did very seriously consider choosing the “flat” option. I have nothing but admiration for those women who actively make the choice to go flat and stay flat and who are, as it were, “flat and proud”. I totally get the explanation that American comedian Tig Notaro gave when she decided against reconstruction after her double mastectomy. Why on earth would you go through such intense procedures just to have fake boobs, she said. I know there’s a lot more to it than that – and I mean a lot – but I get what she means.

My own decision on whether to have revision surgery or not would be a bit easier if I didn’t have what’s known in the business as wait for it… “good in-bra symmetry”.

It would also be easier – and this is key – if they hadn’t made such a good job of the reconstruction in the first place. That is so clearly not a complaint but it helps explain my dilemma. For example, there are no visible scars on the reconstruction. The scars are in the “intrammary fold”, where the breast and chest meet, so you can’t normally see them. With a breast lift, or mastopexy to give it its proper name, you inevitably have visible scars. It depends on the type of lift you have, but if you want to know exactly where they can be, click here.

I know I heal well – if you saw how faint the horizontal hip-to-hip scar I have from the original reconstruction operation is now, almost 11 months on, you’d see what I mean. The scars following a breast lift would fade in time too, but they’re unlikely ever to disappear completely. So do I really want to disfigure my good boob in the first place? Especially when there are no scars visible on the reconstruction. Then again, I have scars in lots of other places and I’m quite fond of them. They all tell a story – from the two big circular burn scars on my lower left leg from a childhood run-in with a radiator to the one under my chin from just a few years ago when the dry cleaning I’d just picked up got caught in the front wheel of my bike and I flew off over the handlebars in spectacular fashion.

To add to those I now have the hip-to-hip scar and a scar under in my right underarm where they removed some cancerous lymph nodes.

One of the big things revision surgery can be for is nipple reconstruction. Since I had a nipple-sparing mastectomy, that’s not relevant in my case. Also, sometimes the abdominal scar needs revising; mine doesn’t. Or lumps of dead fat tissue develop in the reconstruction that need removing; I have none of those either.

But there’s more in the against camp. With a breast lift, there’s a small risk of reduced or complete loss of sensation in the nipple/areola, often temporary, sometimes permanent. Given that there’s no sensation at all in any part of the whole reconstruction (On very intimate terms with three new people), I do wonder if that’s a risk too far. In addition there’s the recovery period to consider, and the inherent complications of surgery. You’ve also got to bear in mind that nature will again take its course once you’ve had the lift; that lifted breast ain’t gonna stay lifted forever.

Anyway, I don’t have to decide any time soon. Part of me says wait a while and go for a lift when the good breast really has gone south! Or perhaps I’ll end up not doing anything at all. In the meantime I think I’ll park this particular issue and just get on with living life. And on this particular Sunday morning, that means a league match down at the tennis club. Wish me luck!

 

It’s not over ’til it’s over

The hospital-based phase of my breast cancer treatment has finished but there’s still lots going on. My final radiotherapy session was a week ago now (Bike 8 – Car 7. Victory is mine) but by tomorrow afternoon I’ll have been back at the centre every day this week except today. Given that I started radiotherapy on 4th February, that means I’ll have been there every weekday – including two days as an in-patient – for precisely a month. No wonder I’m tired. And there’s more to come.

On Monday, I had my post-radiotherapy appointment with the consultant oncologist who organised the radiotherapy treatment. Also on Monday, I had to have new dressings put on those parts of the irradiated area that are worst affected by the radiation. On Tuesday, I had a six-week check-up with the plastic and reconstructive surgeon. On Wednesday, I was back at the radiotherapy department to be checked over and to have fresh dressings applied. I’ll be there again tomorrow for the same.

Let’s start with the “radiotherapy-induced skin reaction”. This is really common in people receiving radiotherapy (Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)) and can involve redness (yes), dryness (yes), itchiness (yes) and skin breakdown, ie cracking or weeping (not quite, although one or two areas are still at risk). The reason they’re keeping a close eye on things is that radiotherapy side effects can continue to develop after treatment ends and indeed can be at their most severe around 7-10 days after your final session. While the radiographers don’t think the skin will break down now (if it did, I’d be at increased risk of infection), they’re continuing to take precautions until the 10 days are up. Better safe than sorry, especially with my record on infections.

On to Monday’s meeting with the oncologist. She examined the irradiated area and said she was “hopeful” the infection that had me in hospital for two days on iv antibiotics was resolved (It went downhill from there). I finished my course of antibiotics later on Monday and there’s been no flare-up, so it’s good news on that front.

There’s still swelling/fluid build-up in the reconstruction and under my arm and the cording  (where the lymph vessels have hardened following the removal of the axillary lymph nodes) there has got worse. The cording now stretches from where the reconstruction meets my chest to past the crook of my arm. The oncologist suggested that a massage treatment called manual lymphatic drainage or MLD might help with the swelling. From what I can tell, this could require sessions three times a week or more for up to three weeks. So much for finishing treatment. Except now, of course, instead of treating the cancer, we’re treating the side effects of cancer treatment. Major difference. The physiotherapy I was having – and loving – for the cording is on hold until the skin reactions from the radiotherapy clear up. The MLD wouldn’t start until then either.

As for the plastic surgeon, there’s good news there in that she didn’t seem overly concerned at the appearance of the reconstruction and surrounds… despite the swelling, redness, inflamed scars and indentations. She did agree it was not the “lovely” – my word, not hers – thing that it was in the aftermath of the operation. However, she said reassuringly that while it might take six months (yes, six months!) for everything to settle down and will likely require a second round of surgery to tidy things up, “I don’t think you’ll have any problems” in the longer term. Phew. My claim to fame is that she took a couple of photos for her collection. She didn’t often get to see her reconstructions like this, she said, ie in their full, immediate post-radiation, scarlet glory! I’m really not used to having this part of my anatomy photographed but I was happy to oblige.

The abdominal scar has healed really well. I got some advice on how best to massage the area above the scar to loosen it off (it’s still quite tight) and on scar care in general. Also, not that I did that that much of it before, but I can start running again. I’ve to wear two bras, though, a regular sports bra and a crop top!

Next week is shaping up to be a lot quieter on the appointments front. Hopefully the radiographers will sign me off at the beginning of the week and then I’ll have nothing until the following week when I’ve got appointments with the two consultant oncologists involved in my care. The oncologist responsible for the radiotherapy – a clinical oncologist – will review how the skin reactions and swelling are looking and perhaps I’ll get an idea of when I can restart physio and perhaps start this new MLD treatment. The oncologist who’s been responsible for all my drug treatment to date – a medical oncologist – will arrange a date for me to come in to the chemo unit for my next cycle of the bone-hardening drug, zoledronic acid (Breast cancer does indeed “come with baggage”). I’m to have this initially every three months and then every six months during the five years I’m on letrozole hormone therapy. I had the first cycle with my final chemo session last November. It’s hard to believe that was only three months ago. It seems like an absolute age.

 

 

 

 

 

 

 

The basics

I could write a book about the last 36 hours alone but instead I’ll just give you basics.

I have been out of intensive care since around two o’clock this afternoon. The plastic surgeon came in the morning and declared herself happy with things, saying it had all gone “very smoothly”. There’s a lot of bruising but the reconstruction looks quite amazing. The breast surgeon managed to spare the nipple, at least for the time being. I’ll get the results on whether that can stay or not, on how much cancer was left in the original breast and how much was in the lymph nodes in one to two weeks’ time.

Andy came to visit this morning just as I was about to try and get out of bed for the first time. They let him see me for two minutes then shooed him off to the waiting area so they could get on with things.

It took a massive effort just to get into a sitting position on the edge of the bed. I was sweating buckets within seconds. Standing up was ok, as was shuffling four steps sideways to the chair and sitting down. However, I started to feel dizzy within seconds of sitting down, closed my eyes and started taking deep breaths… then fainted. It was just for a few seconds. I came round to see the outstretched hands of three intensive care nurses who would have made sure I didn’t fall off the chair.

I managed to sit in the chair for the designated ten minutes and then retraced my steps and get back into bed; there was no fainting on the return journey. It wasn’t easy and it wasn’t pretty, but that’s another hurdle passed. Andy said when he came back, I’d changed colour.

I had been warned it would be hard. The plastic surgeon had told me twice “you’ll feel like you’re 105 the first time you get out of bed” but explained it was important to do it on the first day. Tomorrow apparently I’ll be up and walking. Great, but hard to believe at the moment.

I’m still on loads of painkillers but I’m taking all of these by mouth now, except the morphine, which I still self administer via a drip as and when needed. To be honest, I haven’t used it that much today. I did of course use as much as I was allowed for the getting out of bed event.

What else?

Well Andy came back earlier this evening, this time with the boys, which was lovely.

My potassium levels are low so I’ve been given Nutrisip “oral nutritional supplements” to drink. They’re seriously revolting.

The physio’s been round, and has given me lots of exercises to do.

I’m now on two-hourly checks. Luxury! Night, night.

 

Saturday’s op – a daunting prospect but a key step on the road to wellness

I’m finally starting to feel more positive about the operation I’m to have on Saturday. It’s what the past four months or so have been building up to and I’m trying to focus on the fact that it is, as a friend from work put it, a key step on the road to wellness. It’s not easy, though, when I’d so much rather none of this were happening at all.

I know with the mastectomy we’re getting rid of however much is left of the breast tumour after the eight rounds of chemo (An “excellent response to treatment”) I’ve had since 19 August. I’ve accepted the axillary lymph nodes have to come out, although I can’t help worrying that I’ll develop lymphoedema (Fear of lymphoedema) at some point in the future. And I’m completely happy with my decision to have the immediate reconstruction that involves using a flap of tissue and skin from the tummy area to create the shape of a breast.

I have to be at the hospital at 6am on Saturday morning. The operation itself will start at around 9am and, according to the plastic surgeon, it should be over by 3 or 4pm. The op is a pretty daunting prospect, not least because it lasts so long. The longest part is the reconstruction, during which the tissue and its blood vessels are completely detached from the tummy and reconnected using microsurgery to a new blood supply in the chest area. Amazing.

After the op, I’ll be taken to the high dependency unit where I’ll have one-to-one care with the breast wound being checked every 30 minutes for the following 12 hours. I’ll be covered in a heated blanket to keep me warm and so increase the blood flow to the tissue that’s been moved from my tummy to my chest. There will be huge amounts of painkillers involved, not least morphine on demand. I’ll be hooked up to lots of monitoring machines. There will be a few “lines” for drips – for painkillers, antibiotics, fluids, taking blood. I’ll have a urinary catheter in. I’ll have four lots of surgical drains in place to drain blood and fluid from my various wounds. I will also be linked up to a “sequential compression device” that will massage my lower legs to guard against my developing DVT.

It sounds silly, but I’m wondering what I’ll wear on my head during surgery. I guess not the wig. A good friend who used to be an anaesthetist has said to ask for a theatre cap to wear if I don’t want to go “naked”.

I’ve got my compression bras and knickers for post-op wear at the ready. They’ll hold everything in place that needs holding in place after the deeds are done. I think the support is needed for at least a month. The plastic surgeon has warned me that “you feel like everything’s going to fall out” down where the hip-to-hip scar is. It won’t, she added reassuringly, it just feels like it will.

The plastic surgeon will phone my husband once the op’s over to let him know how it all went and how I am. He’ll come and see me that evening. I don’t imagine I’ll be much company :-). But then I don’t imagine he will be either, given how squeamish he is. What he will be being is extremely brave. I’ll ask him to put something on the blog so that anyone who wants an update can get one.

If things go well, it seems I could indeed be discharged on Christmas Eve or even on Christmas Day itself. The drains will have to be out and I’ll need to be able to dress myself and have a shower unaided before I can go home.

Step one on the road back to wellness – the chemo – is over. I can’t quite bring myself to say “bring it on”, but step two here we come.

 

“Are you happy with the size?”

“Are you happy with the size?” Of all the questions I’ve been asked by the various healthcare professionals I’ve seen since I was first diagnosed with breast cancer in the middle of July, this has to be the best. It came from the consultant plastic surgeon who, in less than a week’s time, immediately after I’ve had my mastectomy and the lymph nodes in and around the right armpit removed, is going to reconstruct my right boob out of my own tummy fat.

So, am I happy with the size? Well, yes. I’ve always taken the view that they are what they are so there was no point worrying about whether I’d like them bigger or smaller. I’m quite fond of them as they are. In fact, I like them so damn much, I’d happily keep both forever. But that’s not possible. For obvious reasons, the right one has to go. I’m sure I’ll miss it when it does.

“Don’t even think about touching the good one” was my initial thought when the plastic surgeon put the question to me during my first appointment with her a couple of weeks ago. I didn’t say that, though. I just said something like “yes, I think so”, and left it at that. I was intrigued, though, and asked about it when I met the surgeon again last Tuesday to go over any remaining questions I had about the operation (19 December – it’s official & Immediate reconstruction – the decision is made) and recovery. It seems some women take the opportunity to have the healthy one made bigger or smaller and then the reconstructed one is made to match. Others, like me, just want the healthy breast left alone.

Thinking about it during the drive home, I realised that while the plastic surgeon mentioned the possibility of breast reduction and augmentation, she didn’t make any mention of a lift – or if she did it didn’t click. Now there’s a thought…

 

An “excellent response to treatment”

I got some very good news at the consultation I had with the oncologist on Monday in advance of today’s chemo session. The MRI scan I had on 3 November – to review any effect that the chemotherapy drug I’d had two sessions of at that point was having on the breast cancer – shows there has been “an excellent response to treatment”.

The chemo is continuing to do its job, so much so that the “primary lesion is no longer clearly identifiable”, the much bigger suspect area that extended from the nipple back towards the chest wall “is now no longer distinguishable”, and there is no longer any sign of the cancerous lymph node there had been in the right axillary or armpit. This doesn’t mean the cancer is “gone “- you wouldn’t expect that anyway in cancers that are oestrogen positive like mine – and it doesn’t mean I need any less surgery than I was told I’d need initially. However, it’s good news in that it has positive implications in terms of my prognosis.

Regardless of the effect of the chemo on the tumour, for various reasons I was always going to have a mastectomy and also, it seems, lymph node clearance. The main aim of chemo was always to lower the risk of the cancer coming back in the future by killing off any cancer cells that had broken away from the main tumour and were on their way to a new site somewhere in the body but that that couldn’t be detected. Breast cancer cells spread through the lymphatic or blood system. As the oncologist explained at the start of the treatment, although I might be paraphrasing here, “We’re good at finding [breast cancer cells that have broken away] once they’ve got to where they’re going but not so good at finding them when they’re on their way there”. The fact that the chemo is working so well on something we can see (ie the tumour) implies it’ll be having much the same effect on any stray cells that may be out there but can’t be seen.

Importantly, the MRI scan report makes it clear that the scan “alone cannot predict the absence of disease”, that “the presence of residual tumour” within the breast cannot be excluded, and indeed that there are areas that are “presumed to relate to residual disease”.

I had a consultation with the breast surgeon too on Monday, straight after after I’d seen the oncologist, and he made it clear that mastectomy and lymph node clearance were the only safe options when it comes to surgery, again paraphrasing, “given that we’re looking to cure this”. They’ll do tests on the breast tissue and the lymph nodes they’ve removed post surgery to determine how much cancer is there. Clearly there will be less than there would have been had they done the mastectomy and nodal clearance in August before I’d had chemo. The lower your “residual tumour burden” at the time of surgery, the better your long-term prognosis.

There’s been a bit of a glitch with regard to chemo side-effects. I have developed in the ball and toes of my right foot some degree of chemotherapy induced peripheral neuropathy, a known side effect of paclitaxel, the chemo drug I’ve now had three sessions of after today. It’s a very strange type of pain, like a mixture of numbness and pins and needles and throbbing that comes and goes. It’s been enough to wake me up a few times in the middle of the night. The oncologist did a test whereby I’d to say whether she was touching my toes with a sharp object or a non-sharp object. I felt the touch, but pretty much “consistently failed” on whether it was from the sharp or non-sharp object. The oncologist therefore reduced the dose of the drug for the chemo session I had today by 25%.

I’ve to report back at my consultation with the oncologist in two weeks’ time – before my fourth paclitaxel session, which is my eighth and final chemo session (yippee!) – on whether this problem has got worse. The aim is to see the chemo regimen through as it’s having such a positive effect on the cancer, but not at the expense of long-term nerve damage that won’t get better. If the neuropathy continues to worsen – it started after the first round of paclitaxel – we won’t do the final round of chemo.

Lastly, the effect the chemo has had may also have positive implications for the reconstruction I’m having done at the same time as the mastectomy and lymph node clearance. Yes, I’ve decided in the end to go for an immediate reconstruction and indeed first thing yesterday morning met with the plastic surgeon who’ll be doing the procedure. It looks like the operation could be on 19 December. More on this at some point. It’s been a busy few days.

PS I’ve preferred to go to most of the consultations on my own but my husband was there on Monday when I met the oncologist and breast surgeon. This whole thing has been a massive education for me. Think what it’s been like for a man who claims not to have known until after I started chemo that we had white as well as red blood cells! When I told him I was adding this to the blog, he said he wanted to know first whether I was holding any other colours back from him. I think he was joking on this last point. Either way, our consultant haematologist friend is going to despair when she reads this.