The oncoplastic gods

I just came back from seeing the tissue viability consultant (confusing title - nice lady) and had a phone call. It was my oncoplastic surgeon, Mr A. After three months, I'm still having a few complications related to my mastectomy and reconstruction. Past highlights include a blood transfusion (five pints worth, thank you blood donors) and a necrotic breast (from which a giant gobstopper of dead tissue had to be removed and muscle/skin regrown). Now I have a hole in my back that refuses to heal. Mr A was sitting in a cafe in Harrods, treating himself during some rare time off, but he wanted to know how my meeting with the tissue consultant went.

Can we really be talking about the NHS? Over the last three months, every time I have had a worry or a question, I've been able to text Mr A directly. And he always, always texts me back, sometimes immediately. I imagine him about to go into theatre with the team, his phone beeping with my text and him saying "ooh, hold on a sec, it's Kelly, won't be a mo!" Well. Of course that doesn't happen. But the thought of being important to my surgeon, who makes all the big decisions about my care, is a really comforting one. And I know that all of the surgeons at the Mermaid care deeply about their patients, and vice-versa. "They're gods, aren't they?" said M, a lovely ward housekeeper, when I was in hospital. All of the ladies agreed between mouthfuls of lukewarm shepherd's pie. M went on to regale us with a story about a woman who'd had the name of both her surgeon and oncologist tattooed at the base of her spine. We cooed in admiration and wonder.

So, despite sitting in Harrods eating mango cheesecake (and definitely not shepherd's pie), Mr A rang me, like any friend would, to ask me how I was doing. It's heartwarming.  I feel I must honour and celebrate you, Mr A, but to make sure you don't get a big head, here is my final homage: a card I received from my friend Rach while I was recovering from surgery. She drew arrows pointing to our husbands, but there is also one (second from left) that says "this is your surgeon".  I laughed until my new breast hurt.

High anxiety, you win

When I was waiting for my first round of results, Mel Brooks would pop into my head from time to time with High Anxiety. Songs often come into my mind when I'm having a crisis. Fortunately this one would make me laugh, which was a welcome reprieve during a fear-ridden time. As I mull over different aspects of DCIS, I'm trying to figure out how to talk about that engulfing feeling of anxiety - because when people have DCIS, they often feel so much fear (as I did), despite being told that it may never turn into invasive cancer. Martina Navratilova described her DCIS diagnosis as her "personal 9/11", which shows how evocative that fear can be. 

The difficulty is exactly this: it may never turn into invasive cancer. But it might. People are enduring mastectomies, lumpectomies and radiation, hormone therapy - just in case. Articles about over-treatment abound, and yet few are discussing the ramifications of under-treating DCIS. We still don't know which cases of DCIS are going to turn into invasive cancer, or when. Surely a proactive approach is better than waiting until even more aggressive therapies like chemo are needed or, heaven forbid, when it is potentially too late? The act of waiting takes its toll. Not knowing what you are dealing with is a mind-fuck. Sorry, but I can't think of a better word to describe the turmoil. All very well for researchers to say don't treat the disease unnecessarily because the statistics are on our side, but what of the anxiety? 

How to prepare for a mammogram

A friend sent me this advice regarding mammograms.

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following exercises, you will be totally prepared for the test and best of all, you can do these simple exercises right in and around your home.

EXERCISE ONE:

Open your refrigerator door and insert one breast in door. Shut the door as hard as possible and lean on the door for good measure. Hold that position for five seconds. Repeat again in case the first time wasn't effective enough.

EXERCISE TWO:

Visit your garage at 3AM when the temperature of the cement floor is just perfect. Take off all your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat with the other breast.

EXERCISE THREE:

Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your  breasts. Smash the bookends together as  hard as you can. Set up an  appointment with the stranger to meet next year and do it again.

You are now totally prepared.

(Thanks, Lindsay.)

The Cornish Mermaid roadshow

I wouldn't want to holiday in one, but the other day I walked past the latest in Cornish fancy caravans - a new breast screening unit - and it made me glad. It was sparkly NHS-blue and white, and proclaimed its ability to bring "care closer to your home". It was sitting outside the Mermaid Centre, Cornwall's wonderful breast screening clinic.

I like the idea of the Mermaid Roadshow. Instead of traipsing in to Truro, sometimes on rural buses that turn a half hour journey into three, women will be able to have their mammograms (and results) on their doorstep. I hope they remember to take the tea urn and the custard creams that we get at the Mermaid. Music would be good too - when I went for my first mammogram, the music ranged from Ella Fitzgerald to Neil Diamond. It took my mind off things. I suppose it would be a bit much to expect them to install an aquarium and a few paintings here and there. Oh well. What the roadshow's got that the Mermaid hasn't is proximity to your bed: you'll be able to leave the screening unit and know that in a relatively shorter time you can roll into bed and throw the covers over your head, leaving Neil Diamond, Ella Fitzgerald and the custard creams behind you.

The melon spoon myth

I have to hold my hands up in the air and admit to perpetuating the Melon Spoon Myth. Before my mastectomy and reconstruction, I had tried to make sense of the oncoplastic jargon in my breast surgery handbook but to no avail. Because I knew the tissue in my breast had been removed via my areola (TMI? Leave now),  I invented my own theory: they must have scooped it out using a melon spoon. Once again, my surgeon has put me straight. 

Apparently the skin is so amazingly stretchy that, yes, in my case they cut out the areola, but then they make flaps in the skin (think peeling an orange with a nice sharp knife) and peel it back to make a sizeable hole so they can easily cut the tissue away from the breast wall.  I had what’s known in the trade as an extended LD flap reconstruction. Apparently LD stands for the latissimus dorsi (back) muscle that's used to replace the old breast tissue. Flap is the key word here though: I know because my surgeon drew me a picture on a paper towel. 

I didn’t want any silicon or foreign objects to form my new breast, which is why I opted for using my own raw materials. During my surgery, they cut into my back and wrestled out my latissimus dorsi, swung it under my armpit using the blood vessels as a pivot and – ta da! – my new breast was born. It might have been a bit more complicated than that. But at least they didn’t scoop up the back muscle with the melon spoon and squish it back through the tiny hole of an areola, as I had imagined they did. Phew.

DCIS by tweet

I started documenting my experience with DCIS on Twitter in January this year. It was good for a while: when my brain was like jelly, I could just about manage 140 characters to nail what was important to me at the time. Now I'm ready to start writing about it in full, I've decided to bring the DCIS experience to my blog, and keep my tweeting DCIS-free. Of course, my experience is far from over: I look down at my breast today and it's not pretty; I see an angry, red, scar-ridden chest and, while I feel fortunate to have had my particular shade of breast disease caught early, I struggle with feeling grateful when I look at it. I thought I'd share those diary tweets here, because they show an emotional transition, even in those few entries, and it's important to me to to capture the emotional side of DCIS in the article I'm researching.

11:14 AM Jan 20th via web
Face like clay. Red and grey stripes from the neck down. 3 red fleshy buttons on my chest. Radioactive blue pee. Lymph node culling.

9:29 AM Jan 25th via web
Going to take my bandages to the practice nurse so she can inspect my lymph surgery wound and re-dress it. This is the life!

11:17 AM Jan 25th via web
I love the NHS. Got co-codamol and gastro protective tabs & a pre-op blood test to check for infection. Wouldn't have been better in the US.

8:23 PM Jan 26th via web
Notes from a DCIS patient #3: Lovely lump the size of a ping-pong ball under my arm. Senoma? Seroma? Sedona? Hmm - no, that's Arizona.

10:33 PM Feb 6th via web
Notes from a mastectomy patient #4: Tangerine Dream: the name of the cloth bag in which I carry my blue plastic blood-draining concertina.

8:52 AM Feb 17th via web
Notes from a mastectomy patient #5: swapping mobile numbers with your oncoplastic surgeon exacerbates the Florence Nightingale effect.

9:36 PM Feb 17th via web
Mastectomy Notes #6: strange to see a scalpel coming towards your necrotic breast and feel - nothing, despite the enormous hole left behind.

1:05 AM Feb 18th via web
Mastectomy Notes#7: Shouldn't have looked up my breast necrosis on wikipedia. Thankfully, the therapy involves manuka honey, not maggots.


4:21 PM Feb 27th via web
Mastectomy Notes #8: Busy persuading pharmacists that manuka honey is prescribable via a call to the British Pharmacalogical Society.


10:25 PM Mar 27th via web
Mastectomy Notes #9: It ain't over till the surgeon sings.

9:04 AM Mar 28th via web
Mastectomy Notes #10: Sometimes the twee pink grates, but no-one can say it doesn't do its job: http://bit.ly/ci05ZU (Thanks #aboutthegirl)

11:27 AM Mar 28th via web
Mastectomy Notes #11: What do men with breast cancer think of the pink ribbon?

7:06 PM Apr 13th via web
Mastectomy Notes #12: Two months in, I'm starting to feel the trauma - a bit like getting sensation back in the skin, only it's my brain.

9:21 AM Apr 24th via web
More Mastectomy Notes, #13: as the dressings come off, there's no denying the facts. Having a rebuilt breast is emotionally weird.

Ready to pick over the breast cancer minefield?

Here we are, four months or so since my last post. I am writing an article about my DCIS, because I think there are important things to say about it that would help other women. There are so many different angles I could take, however, and I'm having trouble getting started. There seems so much to say, and I don't know how to say it. I'm going to start with a little bit at a time, here, and see where the writing takes me.

Picture this: you've got your Sunday paper. You've pulled out the magazine to browse through while you drink your coffee. The headline is something like: Do you feel lucky? (Dirty Harry somehow doesn't seem appropriate when talking about breasts, I know. I'm working on it.) 

In December 2009, I was diagnosed with DCIS: ductal carcinoma in situ, an early form of breast cancer. The same form, as it happens, as Martina Navratilova, although there I stop making comparisons. There is an incredible range of diagnoses and individual risk factors affecting the likelihood of it turning into full-blown invasive disease. In many women, it never does. In others, it’s highly likely. The key here is that we have an opportunity to prevent (for some) later stage breast cancer, to catch it nice and early before it’s had a chance to eat away at our bodies. Hurrah! The problem is, we don’t know which cases are going to mutate, and when. Bollocks.

DCIS, let alone the whole category of breast cancer, is dreadfully misunderstood. DCIS isn’t a one-size-fits-all disease. There are three different grades, for starters. 1 is low, 3 is high. If you have grade 1 DCIS, and you’re getting on in years, there’s a minimal chance of it turning invasive. My surgeon puts it like this: if you're an older woman with grade 1 DCIS, you may not need to have breast surgery. You may not need any treatment at all. You're more likely to die of old age first. If you have grade 3 (which mine was), if it’s extensive (mine was 9 cm) and you’re pretty young (I was 38), your chances of getting invasive cancer, and soon, skyrocket. I had a mastectomy. Every doctor must make an assessment of risk and advise on appropriate treatment based on the individual patient. So don't hit the panic button. Well, not without being informed properly. Unfortunately, some people aren't - but it's not necessarily anyone's fault. The subject is a minefield and difficult to navigate, even for doctors...

You still here? More soon!

(Photo by "joxin" at http://www.flickr.com; creative commons)