Tagged: genetics

Angelina is a brave woman

Is it old news to do a post responding to Angelina’s brave announcement last week?

You can imagine how many people have asked me my thoughts on this. I appreciate your interest, and I think it’s great how much dialogue Angelina’s words have sparked. I could have done without the narrow-minded, withering and smarmy responses to Angelina’s announcement that popped up periodically on Facebook, but then, the haters will always hate, won’t they?

So what do I think?

That Angelina is a brave and strong woman, and that she deserves our respect. Bringing this complicated subject in to the public eye can only be a good thing.

But…

(There’s always a but…).

What worries me, coming at this from the less fortunate side of the bilateral mastectomy debate, is that a good news story like this can over-simplify the subject matter a little.

Just in case you’ve only recently started reading my blog, a quick refresher on my experiences thus far.

Last June, after a woefully slow diagnosis process, I was found to have an invasive ductal carcinoma underneath my right nipple. It was roughly the size of a twenty-cent coin (that’s a bit bigger than a quarter, my USA friends…). At my doctor’s advice, I underwent genetic testing, and found that I carried the BRCA2 gene mutation.

After some consideration, I decided to undergo a bilateral mastectomy – prophylactic on my left, removing the cancer on my right. I had no choice but to lose my nipples – one was already affected by the cancer, and from my perspective, any remaining breast tissue wasn’t worth the risk. I didn’t have enough spare tissue (eg a tubby tummy) for a natural tissue reconstruction, so I had the first stage of my breast reconstruction along with my initial surgery, just as Angelina did.

In the weeks following the surgery, I was really quite happy with the aesthetic result. Sure, I didn’t have nipples, but I did have rapidly expanding breasts, which was good fun. They were also gravity defying. Bonus.

Unfortunately, there were also tiny amounts of cancer found in my right lymph node. This meant that I had to start chemo before my final reconstructive surgery (the point where the expanders are replaced by silicon implants). I was assured that it was fine to keep the expanders in for the six months or so of chemo.

Sadly, it was not the case. My left breast developed a bad infection. It took months before it was correctly diagnosed as cellulitis (the bug responsible was called Pseudomonis) and by that point, the infection had also spread across my chest wall to my right breast. I was in terrible pain, and it took three additional surgeries, three week-long hospital stays, and five weeks of IV antibiotics (and the end of chemo) before the infection was finally banished.

The day they removed my left implant was absolutely heart-breaking. Ditto the day they removed my right implant. For months following I couldn’t look at my naked body in the mirror. I couldn’t bear to see the long ragged scars, the loose flab where my beautiful breasts used to be.

It’s still really hard. While I’ve now grown accustomed to my breast-less torso, at certain moments I’m suddenly abruptly reminded of how different I am from other women. I’m too scared to get a massage or a spa treatment because I don’t want to have to explain why I have no breasts. At the gym and the swimming pool, I now get changed in a toilet cubicle because I don’t want myself or anyone else feeling uncomfortable or awkward. For months I even tried hiding my scars from my own partner. It’s still many months before I can start again and embark on two more major surgeries to hopefully get my breasts back.

But what does this have to do with Angelina?

What she’s proposing avoids most of this nastiness. By having the bilateral mastectomy preventatively, you can usually keep the nipples. They go a good way towards hiding the nasty scars. And being healthy throughout the reconstruction (rather than immune suppressed while undergoing chemo) means that the chance of infection is very small.

However.

Here’s the interesting part. When I was debating the bilateral mastectomy, I was debating it on largely aesthetic grounds. It’s human nature to view it that way. But the thing is that having a bilateral mastectomy has a much, much deeper impact than purely aesthetic.

Let’s not beat around the bush here. Mastectomy is a pretty word for what is actually an amputation. Along with the breast tissue that is scraped out from the chest area go the nerves as well.

Over the months, the nerve endings try to repair themselves. A lack of sensation turns to strange dull pins-and-needles. Sometimes it feels like two phantom breasts are hanging off my chest. The lack of sensation extends right around to the start of my back, which feels quite painful to the touch.

It’s easy to say so what, you don’t need breasts. But actually, psychologically, I say you do. Without going into gory detail, breasts form an important part of a woman’s sexual physiology. It’s in this context that I miss them the most. I actually feel like less of a woman without them.

Will having fake, reconstructed breasts help reduce this? Maybe. But it won’t bring the sensation back. Those new breasts will never be completely part of me.

Looking back on those difficult days leading up to my mastectomy, I wish that someone had told me to really feel how it was to have breasts, and to remember that feeling. But everyone was too busy telling me how great my new breasts would look.

Right now, with my ravaged flat chest, do I most want the appearance of my breasts to return? No. I want the sensation to return. I want my chest to feel like it belongs to me again. I would be interested to know whether in six months time, Angelina feels the same way.

I’m not saying bilateral mastectomies are a bad thing. They’re a life saver. And I commend any woman with the strength to go through with it, particularly prophylactically.

But I just want the dialogue to go deeper than it was three months of discomfort but then I popped out the other end with great breasts – the end.

It’s just not that simple.

And we’re doing women a disservice if we make it out to be that simple.

This is my honest opinion. Please respect it for what it is – an opinion. I don’t know if my experience is typical, good, bad, middling, but it’s worth sharing. I hope it may prove of assistance to someone making what is possibly the hardest decision of a lifetime.

All my love, as always.

__

Postscript: As per always, Scorchy has posted some incredibly insightful comments on this topic. Definitely worth a read.

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Waiting for Chemo

When devising this blog post I toyed with going all high-brow-lit on you and doing a spin on Waiting for Godot where two protagonists talk back and forth beneath a tree and Chemo never shows up. Confused much?

I think it could be a hard read so I’ll give you the Readers Digest version instead.

So, the two protagonists are Charlie and I and, naturally enough, we have Chemo filling in for Godot. While we didn’t stay beneath a tree, talking back and forth, we did talk in a wide variety of other locations.

Location 1: The bus
Where Niccola declares that everything is terrible and the world is mocking her and look at all the shiny happy people on the beautiful spring day and why oh why do I have to do bloody chemo how unfair is that??? (Lack of punctuation more accurately recreates Niccola’s mono-whinge style).

Location 2: The IVF clinic
Where Charles gets his back up about the three remaining Judes. (Oops… update… there are now three very healthy SuperJude embryos safely frozen. Sadly the the other three Judes weren’t made of such stern stuff. We salute them all for their efforts.). We prepare to wage war on the IVF clinic but find that we’ve created sufficient waves within the clinic that the clinic has announced special dispensation for us. If all SuperJudes are found to carry the bad gene we now have permission to use them regardless. Small cheer!

Location 3: David Jones
Where Charles and Niccola pretend to be normal people for half an hour, seamlessly integrating back into the non-medical community and buying pants for Charles. They talk pants.

Location 4: The Wig Shop
Where Charles and Niccola seamlessly integrate back into the medical community and continue shopping, this time for a wig for Niccola. Niccola has a delightful time trying on wigs that enable her to fluidly move between personas including Jewish Princess, Double Bay Lady Who Lunches, and  Tuckshop Lady. Luckily it just so happens that there is a Niccola wig just hanging out looking cool, knowing it’ll get there in the end. And the moment it finds its way on to Niccola’s head it’s the one. The best possible Niccola wig that a Niccola could have. I think you’ll love it. But I won’t ruin the surprise – let’s see if you can tell my new wig apart from my (soon to happen) new haircut… I’m hoping to get a lot of “what a great haircut!” comments…

Location 5: Back at home
Where Niccola freaks out again “I don’t want to eat I need to sleep I don’t want to eat I’m not allowed to sleep I’d better eat huh???”

Location 6: The Hospital Pharmacy
Where Niccola and Charles make their second failed attempt at picking up the suppositories Niccola was prescribed for nausea. Apparently there’s been a real run on suppositories. A real run on suppositories? Niccola figures that if everyone else is so damn excited about suppositories they’re welcome to them and decides to try again tomorrow.
Suppositories? Really?

Location 7: HOAC (AKA Home of Chemo)
Where Niccola pops her first three chemo pills, erring on the generous side dose-wise with the one with anti-anxiety properties (Good idea! Clever girl!). She briefly wonders if these are Alice kind of pills and that perhaps she might get very big or very small? She doesn’t. Niccola is escorted to her EZ Boy recliner and everyone admires the Port (ah yes, the Port… must post about that!). They plug Niccola in and give her more anti-nausea meds, this time straight into her chest. So streamlined and futuristic! (Must experiment with attempting to contact the Mothership via the Port later.).

But seriously where the hell is Chemo?

Location 8: Still HOAC
Ah. Just as protagonist Charles has left the building to go and do some real work, Chemo shows up. Ha ha, Charles may not believe me when I tell him Chemo really does exist. I thought that Chemo was some freaky robotic type guy who gave you brain freeze and made everything taste metallic but I was wrong! Who knew? It turns out that Mr Chemo number 1 (we in the cancer business call him “A”) actually looks like red cordial and hangs around in a really big syringe. In he goes. Niccola waits for another Alice moment – will she meet the smoking caterpillar? No, she will not. She will meet Mr Chemo number 2 instead (we call him “C”). “C” doesn’t look like anything at all. He just hangs, all cool and standoffish on the drip stand. No Alice moments this time either. Not even singing daisies? Seriously?

Location 9: Still HOAC
Charles returns, and there is no remaining evidence that “A” and “C” even existed. Still quite possibly a figment of Niccola’s imagination. They leave.

Location 10: Back at home
Niccola waits expectantly for signs of the Chemo, entertaining herself by writing a very poor Readers Digest version of Waiting For Godot. The only sign? Aha. Niccola’s urine is now red cordial coloured. Aren’t you glad I shared? Yep. I know. Don’t thank me…

So… yep… that’s about it really. Return to your regular programming, people… Let’s hope it continues to be this non-eventful over the next three days…
x

Out of the petri dish and into the freezer

I’d like to introduce you to another mythical creature I’ve become acquainted with over the past few months. He’s called a Dilemma. He’s got shaggy brown wavy hair, long curled horns and wears a perpetually bemused expression. He sort of looks like a yak crossed with a bear, if you can imagine such a thing.

The Dilemma has been following me around since this whole business started. We chatted a lot when I was waiting to hear whether I carried the nasty breast cancer gene. “I think I’ll get both breasts off…” I would begin. “But is that really necessary?” the Dilemma would reply. “After all, you might really miss that breast… you could use it for breast feeding!”. “Yes, but I’d always be scared the cancer would come back!” I’d protest. “But what if you got a pair of Frankenboobs and they never felt like yours?” the Dilemma would thoughtfully reply.

When I found I had The Gene, the Dilemma politely stepped aside. “I stand corrected”, he declared. The Dilemma is nothing if not a gentlemen.

I was a little surprised that when we first visited the IVF clinic, the Dilemma was waiting there as well, thumbing through issues of Men’s Health magazines and eating too many complimentary biscuits.

“Hello Dilemma. It’s been a while. What brings you to these parts?”. “Oh, I thought I’d drop by. You weren’t planning on freezing any embryos behind my back, were you?”.

The Dilemma had a point. With all of science and technology at our disposal, we were hardly going to take the old-fashioned approach with this IVF business. If we had just one crack at getting some healthy embryos happening pre- my extremely premature chemo-related menopause, we had might as well know whether they carried the Bad Cancer Gene while we were at it. It all sounded pretty straightforward. Expensive, but straightforward.

The plan was that at the five-day mark (give or take), the clever IVF scientists would take a few cells from the placentas of Judes 1-6 and test them, both at a chromosonal level, and also at a DNA level for the Bad Cancer Gene. In a year or two we’d come along and pluck whichever Jude was considered healthiest and Bad Cancer Gene free from the freezer and introduce them to my post-chemo uterus.

Sounds simple, huh? “Ask the Clever Scientist about what happens to the embryos that have the Bad Cancer Gene…” whispers the Dilemma to Charlie. “What happens to the embryos that carry the Bad Cancer Gene?” asks Charlie.

“We can’t let you implant any embryo that is found to carry a bad mutation.”. The Clever Scientist’s response feels a little glib given the circumstances. “But given that I have no other chance at IVF – that these embryos are quite possibly the only children I’ll ever have… It sort of feels like I’m limiting my chances rather if I can’t implant any embryo that carries the gene…”. “Then maybe you shouldn’t test for the gene…” the Clever Scientist replies. The Dilemma nods sagely.

We leave the clinic with the Dilemma sauntering along behind us, sniffing garbage bins and tripping over passers-by.

Over the next few weeks, the Dilemma is with me 24/7. “But there’s a 50% chance that I’ll pass on the gene! What if there are only three embryos?” I whine. “That’s not good odds…”. The Dilemma is not an optimist, it seems.

We discuss every possible alternative. Not testing the embryos for the gene at all. Testing half the embryos for the gene. Only implanting the male embryos so that even if they carry the gene it’s not so life-threatening. I hate the thought of knowingly endangering my unborn children with a renegade gene. I feel worse about the thought of not having any children at all for fear of a renegade gene.

Then the Dilemma, Charlie and I get mutinous. “If there’s no legislation the Big Bad Paternalistic IVF Clinic can’t stop us from implanting our Bad Gene carrying embryos…” “We’ll fight them on the beaches…” “You can take our DNA but you’ll never take our freedom!!!”.

We attend a lecture by a couple of Genetics heavyweights and hijack the debate for our own means. Australia’s finest minds confirm that the Clinic have no right to dictate what we can and can’t do with our unborn children. We warn the Clinic that there’s a fight on their hands.

And through all of this, in a quiet lab, Judes 1-6 continue to grow in their petri dishes.

After much mental unrest, I feel ready to make my position clear. I will never, ever, knowingly implant a Jude that carries the Bad Cancer Gene if there is a healthy Bad Gene free Jude available. But I will not be told by a profit-making organisation what I can and cannot do with my embryos. And if the choice is between implanting a Jude with a Bad Gene and not having a Jude at all, I’ll be having my Jude. The Bad Cancer Gene is not a death sentence and it’s not a childhood disorder. It’s simply not a strong enough reason not to bring a life into a world.

And with that, I show the Dilemma the door. He ties up his possessions in a red spotted handkerchief and hits the road. When he reaches the corner he looks back and says “You’re doing the right thing, you know”.

“Thank you, Dilemma, I believe I am”.

Three Judes have now been successfully biopsied and are safe in the freezer, and three more continue to grow. Regardless of their genetic outcome, I promise faithfully that none will be discriminated against because of an organisation’s arbitrary interpretation of a non-law.

An open letter to my Bad Cancer Gene

Dear Bad Cancer Gene,

You have lurked in my genome and tortured my family for generations. You gave my grandmother breast cancer in her 30s, and again in her 80s. You gave my father prostate cancer. And now you’ve come knocking at my door.

You’ve taken away my breasts. You’ve instilled in me a deep fear of my own mortality that I doubt I’ll ever be able to shake. You’ll take away my hair and my health within weeks.

You’re forcing me, age 30, to pay $15,000* to undergo IVF when I’ve never even had the chance to conceive a child naturally. And IVF sucks, by the way.

Well, Bad Cancer Gene, the buck stops here and now.

You’ve pissed me off, and you’ve taken over my life, and I will now do everything in my power to make sure that no future generation will ever have to deal with you.

Despite massive ethical reservations, I will fork out the cash to throw every possible genetic test at my future unborn children so that they will be born free of you and the curse you bring.

I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy my children.

And you will know I am Niccola when I lay my vengeance upon you.**

It’s on, Bad Cancer Gene. Oh, it’s on…

*Another big shout out to Medicare, who’ll give me about $7,000 back, theoretically. And by me I mean us, I’m not alone in this investment…

** Apologies Ezekiel 25:17 and Pulp Fiction.

Email: Boob shopping…

July 17 2012

In the next instalment of this highly-paced melodrama, we get to talk genetic testing and boob shopping!

Now I know what you’re thinking… “Boo to the genetic testing – I want to hear about the boob shopping!” but bear with me, I think that the genetic factor is quite interesting too.

Yesterday I met with Professor S, the resident expert on all things gene-related, and a lovely counsellor named Louise. We were there to talk about whether I qualified for a government-sponsored gene test, something which normally costs in the region of $5000. Louise drew an amazing family tree (reminiscent of Year 8 Biology, for those who remember drawing hereditary trees… or whatever they’re called) as Anna and I rattled off the plethora of exciting things my relatives and ancestors had died of over the years.

It seemed that on sheer number of cancer cases in the family alone I qualified for the gene test (well… whoopee!). Louise was there to provide counselling for what I am sure is a troubling time for many. The thing is, normally the people who come for gene testing don’t actually have cancer yet. They’re people who are worried about cancer striking, often because of a strong family history. It’s a big decision… because even if you find you have The Breast Cancer Genes (catchily named BRCA1 and BRCA2) it doesn’t mean you’ll necessarily get cancer. And plus apparently only about 10% of the people tested are found to have the gene (and many people who get breast cancer don’t have the gene). And if you do have the gene, the booby prize (ho ho) is a bilateral mastectomy, possibly with the bonus removal of your ovaries (more on that later). Personally, if it were me, and things were normal… I wouldn’t have that test.

From my perspective, by contrast, just two weeks post-breast cancer diagnosis, the genetic testing was interesting but not stressful. After all, I already know I have to lose a breast, possibly two, and possibly my ovaries to boot. So I think I surprised the counsellor with my zen reaction to the whole thing. I was pretty delighted just to be in a medical appointment where they didn’t shoot my nipple with a biopsy gun… or inject me with radioactive dye… or make me drink a litre of iodine… or cut off my breast!

So it was with a song in my heart and a spring in my step (OK, slight exaggeration) that I took my Very Expensive $5000 Genetic Testing Cardboard Box off to the blood donation guys and gave up a few more vials of the precious red stuff.

Results come in a fortnight, which is very fast by genetic testing standards. It normally would take five to six weeks.

OK, now the boob shopping. “Hooray!!!” says everyone.

This morning, Charlie and I met with Dr M the plastic surgeon. When I think plastic surgeon I imagine some greasy gel-haired snake oil salesman, dripping in gold and leering at my breasts, possibly mouthing “sweetheart, you can do so much better”. Dr M was nothing like this. Phew.

7:30am is a strange time to shop for new boobs, but we soon got into the swing of it. We talked implants. We felt implants. We talked doing two breasts versus one. He checked out my stomach and back for possible tissue harvesting. We established that I am too thin to be harvested for more than the smallest single breast reconstruction. I don’t know whether to be gratified or disappointed in myself, actually.

I am reassured that at the end of this, I might just have a very nice pair of breasts to remember it all by. The finest that the medical fraternity can offer me in fact. As to my final decision as to whether I go two breasts, or just one, you’ll just have to wait for another email to find out.

And now we wait again. We wait for the results of the gene tests. We wait to speak with Dr S again. And we wait for Dr S and Dr M to find a nice long time-slot when they can operate together.

And… oh yes, ovaries… It turns out that if I have the breast cancer genes, I may be a high risk factor for ovarian cancer as well. But fear not, even if that’s the case, I don’t need to start worrying for another ten years or so… by which point I’ll have had the opportunity to pop out a kid or two, with any luck. Strangely enough, this rates very low on my list of concerns right now.

And that, friends, is the state of the nation.

I’m sorry if I’ve been slow to answer your texts or emails, it’s been more due to a case of the flu than a case of cancer! You’ve all been so attentive that I’m beginning to feel like some D-List celebrity.

Lots of love…
x

Email: Keeping abreast of it (pun fully intended)

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July 7 2012

Hi everyone,

I’ve got to say that it feels awfully strange sending a group email on a topic such as this. I must apologise if this feels insufficiently personal or tailored to each one of you very special people, but I’ve decided that this is the best way to keep all my nearests and dearests updated on the goings on.

I’d also like to apologise for the very dreadful pun in the email subject. I have a feeling that it’s the first of many. Anything remotely humorous around this subject is appealing to me greatly right now. I think I’m finally beginning to understand black humour.

If you don’t enjoy long medical-related emails, just ask me to unsubscribe you and I’ll try not to get offended! (And obviously, please no “reply alls”!).

So here we go then.

Yesterday I met with the breast surgeon Dr S for the first time. He’s a really lovely man. Very warm, open and good at explaining everything in a refreshingly unmedical way. After a quick physical examination (oh, how quickly my right breast has ceased to feel like mine, I think it already belongs to the medical profession!) he sat me down and told me very simply and thoroughly where we are today and what is to come from here.

Basically, I have a malignant tumour sitting beneath my right nipple. Unfortunately because of its location, my right nipple’s days are numbered. Good surgery is all about getting clean margins (10mm minimum on all sides of the tumour) and that’s just not possible given the location of my nipple. On the surgery front, I have three options.

– The first is what they call a “lumpectomy” – where they remove the lump, nipple and another 10mm on all sides. This would need to be followed by radiotherapy – 5 minutes of radiation, 5 days a week for 6 weeks (30 treatments in total). I could do this before or after work. The main side effect is a bit like sunburn. Apparently my breast will/would feel like a medium steak for about five years afterwards. This surgery is pretty low-key, I’d only be in hospital for one night.

– The second is a mastectomy, where they remove the complete breast, which means they can basically guarantee clean margins, something that they can’t do with a lumpectomy. This option removes the need for radiotherapy. For a mastectomy, I’ll be in hospital five days.

– The third option is what they call a hybrid option. It’s a mastectomy with a breast reconstruction, nipple reconstruction with areola tattooing optional!

Personally, I don’t quite see the second option as an option. No breast, no way.

However having just googled “nipple reconstruction” (and don’t by the way, it’s gross) I’m not 100% convinced by nipple reconstruction either.

Anyway, early days. I have time to weigh the options up. Currently I’m leaning towards option 3.

Now here’s where we get all scientific. Apparently because I have Ashkenazi heritage there are two genes that give a massively increased risk of breast cancer. At some point I’ll need to get genetic testing to see if I fall into that territory. If I do, my poor left breast may be for the high jump as well. But let’s not worry about that right now – I’m putting that into the “later” category.

In the “now” category, I need to get checked out for secondaries. On Monday I get a Bone Scan, CT scan and blood tests. It’s very unlikely that the cancer has spread, but this is due diligence because if it has, I will need chemo before surgery. They will also test whether the cancer has spread to my lymph nodes prior to surgery.

Assuming that this is not the case (and let’s go with that… I’m very much an optimist) I will probably go for surgery in the few weeks. The lump will be sent to a lab and they’ll see if the margins are all clear.

Then we need to consider chemo. Unfortunately (or perhaps fortunately) because I’m relatively young, it seems that chemo is pretty much recommended. It’s just too much of a risk that nasty cancer cells could be floating around inside of me plotting their next attack, and my surgeon is trying to promise me a good 55 years more living from here so it pays to think aggressively. I can’t argue with this approach!

Chemo is a whole other ball game, and thankfully not something that needs to be front and centre of mind right now. Once again, it’s been filed in the “later” category.

Now… this is a whole lot to take in. Writing this email feels like good therapy, it makes everything clearer in my head when I write it down. Thanks to every one of you for being so supportive already. I’ve really appreciated the company, flowers, emails, texts and calls. It’s a very great comfort knowing that I’m surrounded by such lovely people.

I’m also really, really grateful that I live in an age where cancer research and treatment is so advanced and sophisticated, and in a country where excellent medical care is accessible and available. There was a rainbow over Darlinghurst yesterday morning and I have selfishly claimed it all for myself. It’s definitely my omen.

Lots of love.