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Apr 14, 2019 11:05PM
Apr 15, 2019 07:50AM
Was just going to introduce myself but then ended up writing a whole essay so if you don't want to read it all, in summary: I'm 31, just diagnosed de novo stage IV through routine staging scans even though my lymph nodes appear clear: diffuse sclerotic mets all through my spine, ribs and more than a dozen spots on my liver. I've gone from randomly thinking I noticed a small lump on the side just over a month ago to a breast that is so big and hard and sore with a nipple gone from normal to flat to fully retracted and I absolutely can't wait for chemo to start tomorrow. Cancer is HER2+ and hormone negative, hence the rapid growth I guess.
Just over a month ago in my hotel room in Bangkok after a week jaunting carefree around Thailand and Laos, mostly in various bikinis (I would have noticed if something was weird with my breast!), something possessed me to feel the side of my breast and I noticed a small lump. I was returning to Australia a couple of days later and my GP only works Wednesdays and Fridays anyway so I made an appointment to see her as soon as I would have even if I'd been in Australia. She couldn't even feel the lump but did notice a 'thickening' compared with the other one. She gave me an ultrasound referral but said 'it's probably hormonal, wait a couple of weeks until after your period to see if it goes down before getting the ultrasound and then you probably don't even need to go if it goes away. In the 2% chance it's not just fibrocystic changes, it's 98% a cyst'.
Five days later, a few days into my period it was not going down and I couldn't deny how different and hard the breast now seemed compared to the other one. I Googled symptoms of breast cancer and the horror rushed through me when I realised the nipple was flatter than the other one. (I was fearing inflammatory breast cancer). The next morning I called and got an appointment for the ultrasound appointment the same day.
That day of the ultrasound was the worst - worse than any of the days that followed. It was the day I realised I had cancer even though they hadn't told me yet. I had previously had two ultrasounds on my uterus (all good) so I could tell something was wrong this time. I could tell by the subtle look on the sonographer's face. She was meant to only ultrasound my left breast but then measured something she had found with a ruler, did to the right breast too and then did both sets of lymph nodes. She told me not to get dressed while she went to consult with the radiologist. They said I need a mammogram (which was not ordered). While I was preparing for the mammogram in shock and tears (I knew full well this was not 'routine for dense breasts' - quite the opposite as ultrasound is better for dense breasts) the sonographer asked when I was seeing my doctor for the results. I said 'tomorrow morning at 11'. I saw her face and asked with horror 'should I bring it forward'? I knew from her face I had cancer. She suggested I call the clinic that very day.
After the mammogram they gave me the scan images and even though I knew I probably shouldn't, I sat in the glaring sun outside theultrasound clinic and looked at them. The starry mass/s were highlighted for me to see. I'd read enough to know that a benign mass didn't have 'spiculated' margins like that. i sat in shock at the tram stop.
My mum, who's not a big drinker, had always warned me not to drink too much alcohol because I might get breast cancer. When I said this to others they always scoffed: 'breast cancer, come on!'. Needless to say I was afraid to tell her. But I'm single and was suddenly terrified so I did decide to call her as I got off my tram stop because I was scared. She calmly said "OK, we're coming to get you" and they did. This evening was the worst of all, even as my parents picked me up in peak hour traffic and we slowly drove to my childhood home. I already strongly suspected (basically knew) it was cancer but didn't know 'for sure' yet. And I had just gone into the utlrasound expecting fibrocystic breasts, or nothing.
The next day (Wednesday) my mum came with me to the GP, who said "yes, you have cancer" (you know how you never forget that moment and the look they give you or how they say it?). They had found two tumours and other suspicious areas. Biopsy would be the next day just to get more information, but the scans were enough to confirm the diagnosis and refer me straight away to the cancer clinic (so I knew the scans were bad). Thank you to Australia's universal healthcare system, the fact that I have no health insurance was not a problem as I was directly referred to Peter MacCallum Cancer Centre: one of the world's leading cancer treatment and research centres and a PUBLIC hospital dedicated entirely to cancer. All my treatment will be free.
At the biopsy the next day the sonographers were obviously surprised to hear me say 'it hurts because I have cancer' because presumably most people don't get told they have cancer until after biopsy...
I got into the see the surgeon at Peter Mac the very next Wednesday (nice and quick) and she explained that being HER2+ I should respond well to treatment, and confirmed that they didn't find it in my lymph nodes. Also, the ultrasound had showed the tumours were only 1.6cm each (much smaller than they felt). She said "don't worry we'll get this". I would have four months of neoadjuvant chemo and Herceptin to shrink down before surgery. She was even talking lumpectomy! I felt more optimistic.
I had to cancel my trip to Thailand for when chemo was to start so after routine CT and bone scans I went to Byron Bay for a chemo-moon, ticking off my last Australia bucket list destination and thinking I wouldn't be able to drink alcohol for a year on Herceptin (I've since learned that's not true). I wish i hadn't spent much of that weekend blaming myself for causing my cancer with alcohol (I since discovered alcohol is not linked to HER2+, hormone negative cancer), thinking it was my last chance to drink alcohol for a year but also feeling guilty for drinking in case it was bad for the cancer, and worrying about losing sensation in my breasts and nipples following my ultimate mastectomy. Those concerns are now all irrelevant.
The next day, a week ago, I was to meet with the medical oncologist (MO) to receive the chemo regime my upbeat nurse had already told me I would get. That morning I got a call saying the surgeon wanted to see me first. I texted Mum saying 'it's not good, they must have found something on the scans - there's no reason for me to see the surgeon now and not at the last minute'. She said 'don't worry I'm bringing the lucky family wedding ring'. We went in to see the surgeon who had with her a different very serious and sympathetic-looking nurse (it turns out she's the one who specialises in stage four cases). I knew it was bad. The surgeon told me the scans showed that despite no lymph node involvement the cancer has spread through my bones and liver. Stage IV de novo. I don't think the wedding ring works.
So I saw the oncologist afterwards as planned but now the treatment was different, of course. Six months instead of four months of chemo, a different chemo and surgeryis off the table. PS: The MRI showed it was not two tumours but one 2.6cm tumour and at last 8cm of DCIS - no wonder my breast feels like a giant rock and I bet it's bigger now. Not that any of that matters now.
My workmates were all so worried and nice when I sent them my first email sounding so upbeat and everyone was glad that I had 'caught it early' and also that I could still go Thailand (which I briefly thought I could). Although I've told my bosses and HR about the stage 4 diagnosis, I now have to tell them all that it's already spread and is basically the worst possible situation. I didn't catch it early.
On Saturday night I broke down again because in just the last week ALONE my nipple has gone from flat to retracted and the whole breast is extremely dense. In Byron Bay I was comfortably wearing an underwire bikini top and now I can no longer comfortably wear a bra. I don't need a medical degree to know how fast this thing is growing.
I met with my MO again today and I asked where the mets was and probably shouldn't have: it's a significant amount of diffuse sclerotic mets all through my spine and ribs and more than a dozen spots on my liver (they didn't count them all).
I said how fast it is growing and he just said "yes, let's get you started". I know, I wish we could have started weeks ago! (but realistically couldn't have gone any faster because it's taken a month just for all the scans and diagnostic appointments). He is at least somewhat optimistic that being HR- and HER2+that the cancer could respond well to targeted therapy but as you ladies know, it's the way the cells have had to mutate to move around the body that's the terrifying part I have to explain to people. I've decided to tell the rest of my work team now and explain this to them. I already had my CEO (who my boss must have told) come and say well-meaning but awkward things to me in the middle of our open-plan place office so that other people definitely would have overheard, and I had to explain to him all the usual stuff that treatment never ends and why it's so hard to treat and why it becomes resistant to treatment (this isn't info from my oncologist but from the extensive research I've done myself as I'm a researcher by nature). So I've decided to email at least my team with all this stuff to pre-empt the frustrating and ignorant questions.
I'm really glad that I don't have kids to worry about, and having been single for a Guinness World Record-breaking eight years I've been doing nothing but travel, travel, travel on many short trips (because being single I have nothing to keep me around at home and noone to coordinate with!) with no thought for saving for retirement. I was feeling a bit guilty about that last year (travelling instead of saving for retirement) but imagine how glad I am about that now! I always jokingly thought 'life is too short' to worry about saving for retirement instead of living for now (e.g. my mum's best friend's 24 year old son died in a motorbike accident) but I never seriously thought it would be true in my case. And now I can't even get travel insurance!
PS it's all a cosmic joke because there's no breast or ovarian cancer in my family and barely any other cancer. All my grandparents lived to be at least 93 and my parents are 70. We're not telling my 90-something-year-old Nan: imagine outliving your granddaughter whom you are over 60 years older than?
As you guys probably know it's frustrating thinking I couldn't possibly have gotten this any earlier because they don't exactly mammogram you at 30, and I never checked my breasts because that's just not a thing at my age. None of my friends do either, I asked them. I still don't know what possessed me to find that lump in Bangkok but the cancer was almost certainly already stage 4 by then.
So I know i should be dreading the side effects of chemo but I can't can't wait for it (and the targeted therapy) to start. I can't wait for tomorrow.
PS: not many HER2+ HR- ladies on this forum so would like to connect with any of you. Seems like most people here are HR+ which gives you lots of hormonal treatments that are not available to me.
3/20/2019, DCIS/ILC/IDC, Left, 2cm, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+
4/16/2019 Perjeta (pertuzumab)
4/16/2019 Herceptin (trastuzumab)
4/16/2019 Taxotere (docetaxel)