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.

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. And, of course, damage to the heart, especially if you’re having radiotherapy on your left side.

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.

 

Decisions you never dreamt you’d have to make

One of the things that makes this “journey” so difficult is that you’re forced into making lots of decisions you never dreamt you’d have to make. And some of those decisions are really big.

One of the first things I had to decide following my breast cancer diagnosis in mid-July was whether to cancel our summer holiday or not. We decided to go ahead with it (It’s ok to cry). At the time that seemed like a big decision but it was nothing compared with what was to come.

Then I had to decide whether to have chemotherapy before or after surgery. At the time I essentially viewed this a choice over what to lose first, my hair or my right boob. I said as much to the consultant breast surgeon. I think I was still in shock. I can’t remember whether he found it funny. Unlikely, I would have thought. Anyway, I went with the recommendation of the surgeon and the oncologist and opted to have chemo before surgery. So I’m bald but very happy to have held on to (not literally) my breast for these extra few months.

I really didn’t have much choice over whether to have chemo or not. I was an obvious candidate, given among other factors the size of the tumour, the fact it had spread to the lymph nodes and was fast growing. For lots of women, it’s far less clear-cut. That must be a really tough decision.

Much the same factors make me an obvious choice for radiotherapy, which I’m to have after surgery. Lastly, the fact that the tumour is oestrogen-receptor positive means it should respond well to hormone therapy. So again, the decision on whether to take hormone treatment on a daily basis for the next ten years has really been made for me.

While some decisions were essentially out of my hands, there are plenty of others that weren’t. Many of these had to do with hair loss:

• Whether to try the scalp cooling in an effort to stop my hair falling out. I did (You couldn’t make it up & The torture of scalp cooling).
• Whether to have my hair cut short in advance of it falling out. I did (Long hair – vastly overrated?).
• Whether to stop the scalp cooling when my hair started falling out anyway or to persevere. I stopped (The moulting has begun).
• Whether to just bite the bullet once it did start falling out and shave my head. I did (Thanks, baby bro!).

Now I’m in the process of deciding whether to have breast reconstruction at the same time as my mastectomy and lymph node removal or whether to “go flat” first and see how that goes.

Some women seem to know almost instinctvely what they want. I thought I was one of them but it turns out I wasn’t. In the end, this has turned out to be a really hard choice. I started off determined to try the flat route, but the more time has gone on the more I’m coming round to thinking I should go ahead and have the immediate reconstruction. Believe me, I have spent a lot of time working this one through, quite often while lying awake in bed at 3, 4 or 5 am. Indeed sometimes at 3, 4 and 5 am on the same night. I can find plenty of arguments for and against both options.

The reconstruction that I’m being recommended is a DIEP flap reconstruction – DO NOT CLICK ON ANY OF THOSE LINKS IF YOU ARE AT ALL SQUEAMISH. Yes, it’s the one that involves moving skin, fat, and blood vessels from your abdomen to your chest and so it means that post-op “your belly will be flatter and tighter — as if you had a tummy tuck”. Strange as it might seem, I can honestly say that really does not figure at all in the debate I’ve been having with myself over this.

Crunch time for this big decision is fast approaching. I have an appointment with the breast surgeon to discuss my mastectomy in just a few days’ time, on 9 November. That’s just a couple of weeks before my final chemo session, which is on 25 November. It’s quite possible I could have the operation before Christmas.