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)

Taking a break

I'm doing a Marian Keyes. I'm taking a break from my blog because I can't think of anything except my armpit and my left breast. I've been diagnosed with DCIS - Ductal Carcinoma In Situ - an early (and treatable, thankfully) form of breast cancer. Abnormal cells are sitting in the milk ducts, ready to pounce. I've come to think of it as "on the fence" cancer, since the pathology is not at all clear cut. But because my DCIS is widespread and at the high grade stage, a mastectomy is looming. I am waiting for results of tests on my axillary lymph nodes to see if the cancer has become invasive. While this is all going on, I can't imagine writing about anything else and I am not sure I am ready to do so publicly, so I'm reverting to an old fashioned bedside diary. Back soon x