invasive lobular cancer

Breast cancer lesson number 53: There is a time and a place for playing the cancer card

Every patient facing a cancer diagnosis gets a card (I like to think of it as the cancer equivalent of Monopoly’s ‘get out of jail free card’). It’s a card that when played too often can all too quickly become meaningless and frustrating. But, it’s also a card that, when played tactically, can open doors and make things that otherwise seemed impossible, suddenly very possible.

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Up until now, I have been reluctant to call in the card. I don’t want to scream and shout and parade my illness in a way that makes people uncomfortable. I just want to be me. While there have been a few notable exceptions – 95% of which involve couriers and delivery drivers, absurd delivery windows and strange demands ­(the thought that someone might actually dismantle my new kitchen table if it wasn’t delivered on the day of an important hospital appointment being one) –­ my card is pretty clean (and my conscience too).

That is, until today. Today I needed the card and I was more than happy to play it. Having had another steroid high of a day (yes, beyond a constant morning mouth feeling and strange taste sensations, I am doing pretty well after my first bout of chemo), mum and I decided to catch the boat from Greenwich into the city for a lovely long walk along the river. The sun was shining and it was wonderful being carried along by the crowds. It felt normal and we felt normal. It wasn’t long, however, before we realised there was something missing. Two little white anti-sickness pills!

Having experienced a nasty helping of nausea on Wednesday night, these were two pills I wasn’t going to miss. The trouble was, time wasn’t on our side. When we arrived at the jetty to catch the next boat back we were told the boats were fully booked for the next hour. With the memory of Wednesday still firmly imprinted in my mind, we aborted plan a) (quietly sit and wait) and opted for a more assertive (while still pleasant) plan b).

As soon as the words ‘cancer’, ‘chemo’ and ‘pills’ passed my lips, we were escorted to the nearest seats and looked after my a lovely chap in a bright orange high-vis jacket. He squeezed us on the next boat as a ‘priority case’ and we got back just in time for me to take the drugs. I will be forever thankful to this tall, dark, bright-orange clothed man and am now looking forward to – rather than dreading – the smell of sausage casserole filling the kitchen.

It may seem like a small incident, but that moment taught me the real power of ‘playing the card’. I felt weirdly untouchable and important. When I had actually got over the guilt of knowing it was my own fault for forgetting the pills, however, I also felt a little sad. It’s rare that I am reminded of the seriousness of the cancer that tried to take my life. The truth is, you don’t have to be being treated for the illness to know just how scary the whole thing is. When cancer comes into play, everything feels like a race against time. Trust me, it’s a powerful card, and it’s one I hope you’ll never have to play.

There was another reminder waiting for me at home of the doormat – confirmation of my histology results. For the first time, printed in black and white were the words: ‘multifocal grade 3 invasive pleomorphic lobular carcinoma with admixed LCIS’. As well as my dominant tumour, my naughty breast was also filling up with LCIS (lobular carcinoma in situ). With the LCIS and the invasive mass, the total tumour measurement came to a total of 60mm. Add in the lymph node involvement and that puts me in the stage 3 camp. High-grade, aggressive, and not very fun. The good news? It was stage 3 (click here for the science) and not 4 and it’s out. I have a life – and a wedding – to look forward to and my fight will end. I am lucky. But, I know there are many people who are not so and, for that, I am very sorry indeed.

It was a letter packed with medical terminology. But, it still made me smile. Tagged on the end, after talk of ‘macrometastic disease’ and ‘adjuvant therapy’, was the phrase: ‘On examination her wounds have healed well with good cosmesis’. Thanks to the wonders of Wikipedia, I looked up the word ‘cosmesis’ and discovered it to mean: ‘the preservation, restoration, or bestowing of bodily beauty’. In short, the new boob is pretty good looking. I’ll take that. It’s in a medical letter. It must be true. It may not have a nipple, but the shape is there.

Of course, fuelled by my steroid high and no longer fearing the nausea I didn’t dwell on the letter or the boat trip. Mum and I proceeded to clean the kitchen floor (until I cut a finger on my right hand and went racing for the Savlon), do the washing, hang out the washing, change some lightbulbs, do some composting and cook up some Turkish delight. The dinner is now on. Let’s hope when the steroids wear off tomorrow, the positivity and productivity continue. There’s publishing work to get back to next week!

Cancer doesn’t do days off. In most cases, a pill or a layering of antiseptic cream will bury it in the background for a moment, but it never goes away. At some point, you will need that card. Hold it safe and play it wisely ­­– and dream about the day when you won’t need to play it again.

Breast cancer lesson number six: If Dr Google really had the answers, we’d all be camping out at A&E on a regular basis

Dr Google should be struck off! Far from reassuring us with his wit and his wisdom, one session on the computer is enough to make us run a mile – preferably in the direction of a general anaesthetic! (Please note, I have nothing against Google the colourful brand and the usefulness of its search functionality, just the medical company it keeps.)

In the fight against cancer, however, it doesn’t take long to learn that knowledge is power. And I’m a big fan of power. I walked into the hospital on diagnosis day thinking about my latest publishing deadlines and whether or not I had enough chorizo left to make a risotto for dinner. I came out armed with a small forest worth of paperwork and the determination to read and understand every word.

As far as I am concerned, cancer is just another client – albeit a rather impatient and demanding one that doesn’t seem to like my scheduling! It has its very own notebook, to-do list and meetings calendar. It also has its own agenda – which currently doesn’t quite match mine!

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So, having discharged myself from Dr Google’s rather unsteady hands, I took it upon myself to plough through more than 400 pages on the subject in just one day (it was a particularly fun day!) I am at last learning the language of breast cancer – and fertility for that matter. From lobules to lymph nodes and stages to systemic treatments, my brain is now a giant glossary of specialist terms that sound like they belong in a science fiction movie. I am also comfortable talking openly about boobs (hence the name of this blog), which has been a little alarming for the men in my life. 

Knowing that you feel well, but also knowing that there is something inside you trying to take your life away, is a hard thing to process. For the first few days after my diagnosis, I found it so hard to sleep. As irrational as it may sound, I thought that if I shut my eyes and let my body take charge, the cancer would take me. That’s why I quickly realised, it is so important to stick to what you know and what makes you feel like you are in control. For me, that’s hard work – and lots of it.

If you’re as interested as me about the little battle going on inside my angry right breast, here are the facts (as I currently know them). I must add here that two weeks does not a cancer surgeon make. I have a degree in English, not medicine, and this is my take on the information provided to me.

The Scully guide to Stage 2, invasive lobular carcinoma

1)   It wants to make friends: invasive (rather than ‘in situ’ or non-invasive cancer) means it has the ability to spread. It has already teamed up with the lymph nodes under my arm, so they’ve all got to come out on surgery day. I can assure you this is one invasion that won’t make the history books.

2)   It all started in the dairy: the lobular bit in the name means that cells started to divide and grow abnormally in my milk-producing glands or lobules (rather than my ducts – tubes that carry milk to the nipple). 

3)   It knows the score: whether you like it or not, your cancer gets a grade (and trust me, this is not the time to be top of the class!). The scoring system used grades the cancer (from 1 to 4) by looking at the size of the tumour, whether the lymph nodes are affected and whether there is any spread to other body parts. I have a tumour that is around 40mm (there are two other suspicious areas and I get the biopsy results tomorrow) and there is evidence of cancer in my lymph nodes. That puts me at stage 2. I’ll take that thanks.

4)   Oestrogen is keeping the cancer well fed: this is actually one of the hardest parts of the diagnosis to take in many ways. It feels like my own femininity is leading the charge. The only good thing is that there are more hormone drugs available to join my side of the battle.

There will always be more to learn but, for now, I think I know my enemy. Cancer, it’s time for you to be afraid, not me! 

Dear breast cancer cells, you’ve picked the wrong person if you want an easy fight

I’m Jackie and I’m a statistical anomaly. Even if I were an extra in the Hunger Games films, I have no doubt I’d somehow make it into the arena! In 2007, I had pelvic surgery to help me walk again because my hip socket couldn’t support my leg. I was 25.  Fast forward six years, and I am back in hospital with stage 2, invasive lobular breast cancer. It affects just 10 to 15 per cent of all women with breast cancer and is commonly found in those aged between 45 and 55. I am just 32. And, if we are to believe e-Harmony.com, it takes around 2.8 years for a couple to go from first date to engagement. I got engaged on Christmas Day, just over a month ago. We’ve been together 13 years!

Sat surrounded by tissues in front of my breast care nurse on 17 January 2014, I found myself steering the conversation towards numbers and probability. And it was then that I realised, I am not a statistic. I am a person – albeit with a wonky leg and unhappy right breast. It’s not scientific probability that’s going to get me through this challenge. It’s a positive attitude and a desire to get better – whatever it takes.

Diagnosis day over and I’ve read the fact sheets, made my question lists and signed up to everything I can think of to keep me positive and focused on the challenge ahead. And, you know what? I do feel positive. I know there will be dark days to come, but, as anyone who has read The Happiness Project by Gretchen Rubin will know (it’s an inspiring book for anyone looking to find happiness in daily life), the time for storing up memories, positive thoughts and ‘banking’ happiness is right now. I’ve made my 2014 resolutions and I am not going to let some over-excited cancer cells get in the way.

What keeps me going? Firstly, it’s the knowledge that the champagne that’s still arriving – to celebrate that long-awaited engagement – will one day get used (although there is now so much I might just have a bath in it). Secondly, it’s the knowledge that the bikini I bought for the first time in a decade in the January sales will be worn (my friend believes the only issue is finding good weather). And finally, it’s the knowledge that one day soon, I will walk down the aisle with a full head of hair and a healthy body. I didn’t wait 13 years to fall at the final hurdle!

I have decided to write this blog for a number of reasons:

1)   I was only diagnosed two weeks ago and I have already had so many hilarious (if you, like me, have a rather dark sense of humour), life-enhancing and inspiring (I defy anyone to spend an hour at Guy’s hospital and not feel humbled) moments that I want to capture, share and remember forever.

2)   I have been overwhelmed by the kindness of those around me. My breast cancer notebook (yes, I have a dedicated bright pink moleskin and a to-do list) is already filling up with great bits of practical advice that I am keen to share. My house is also filling up with kind gifts from friends (everything from dark nail varnish for chemo and pampering treats to my very own pink post-surgery boob pillow). I’m not the only one trying to stay positive and arm myself with every tip in the book. I want to share these practical tips to both inspire those diagnosed in the future and thank those kind enough to join me on this journey.

3)   As an open person, I find it difficult to hide my emotions and details of my experiences. I don’t think people mind discussing my latest baking experiment or magazine schedule. Breast cancer, however, is a bit different. It was the point at which I was discussing breast sizes with a client that I realised it might be better to write it down and let people seek it out – rather than fill their heads with talk of tumours and tummy tucks.

4)   I love writing and I am determined to do more of what I love this year! It’s about time.

Why ‘small boobs, big smiles’? When you’ve spent the best part of two weeks with your top off in front of surgeons and nurses, it doesn’t take long to work out that having ‘not much there’ is not an advantage. But, even when they were sizing up my tummy fat and cupping my less-than-ample breasts, I still managed a smile. That’s what this blog is about – finding happiness in unusual places.

The one positive thing about having had major surgery once before is that I know what I need to do to get through this. Last time, I feared the surgery, the hospitals and the pain. What I should have feared was my mind and the way the experience would make me feel. This time I am focused on keeping my mind positive – and letting the experts get on with fighting the cancer.

I know cancer is a frightening and debilitating illness, but I am determined to take what life-enhancing and enriching moments I can from it, while I can. I am already starting to ressemble a human pin cushion, but, you know what, I am still smiling. And I hope, that through this blog, I can help you find the smile that will help you keep fighting too.