Get Out Gertrude
Weird title to a Breast Cancer story - right?
Gertrude was the name we gave to my cancerous breast - I had to keep my breast through chemo and radiation due to the nature of Inflammatory Breast Cancer - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of separating it from myself.
Get Out Gertrude is the name of a blog I started to tell my family and friends about my journey. Along the way it has also become the repository of all my thoughts and feelings as well. You can read more here http://getoutgertrude.wordpress.com
Before breast cancer actively entered my life - I thought I was doing every thing right, I'd paid for a mammogram when I was 42 (2005) as both me and my doctor believed in being proactive, and I did regular self examination looking for lumps in my rather large breasts. I'd catch anything before it had progressed too far, right?
My story begins in July 2008. I developed an insanely itchy breast which I put down to washing powder residue in my bra. Two weeks later (18th July) it developed a mild ache but as it was 'that time of the month' I dismissed it as hormonal. On the 21st of July although my breast had looked completely normal in the morning when I took my bra off that night as well as aching it had ballooned (up a whole cup size we were to find out) and was 'big, red and funny looking' OK this doesn't look right.
I managed to get a doctors appointment two days later and was put on antibiotics, as both myself and my GP thought it must be some sort of infection. When it didn't respond to antibiotics after a week, even though he still thought it was an infection , my GP was worried enough to refer me to a private breast clinic and told me he wanted them to see me within the next couple of days.
I managed to get an appointment the next day, and with my husband in tow, went to see the breast physician. After having a mammogram, which only showed my breast was denser throughout but did show that the skin layer itself was much thicker than usual (4mm). They did an ultrasound which also showed no lump but did show a small collection of fluid. (At this point I am thinking burst cyst causing infection) they then wanted to do first a fine needle biopsy and then a core biopsy. I was not expecting it to show cancer - big red boobs aren't a sign of cancer are they? So I was quite relaxed about them doing it, and even when they told us to come back four days later (Monday 4th of August 2008) I wasn't really prepared for what I heard.
Here's what they told me: "You have 'Inflammatory Breast Cancer. Be careful what you read on the internet. You will need to have a complete mastectomy and auxillary nodes removed as well but first we need to do chemo to get it under control enough to do surgery. Also, there would be no reconstruction for a few years."
"OH Shit!!!" were the first words I said to my husband.
Of course I went home and googled "inflammatory breast cancer" - I read that 10 years ago the survival rate was poor and you were usually given 18 months to live. Even now only 40per cent survival to 5 years. "Death sentence" was how my mind worked when first reading. But within a few days and before we saw the oncologist, it had switched to "Ok what do we have to do to beat this thing".
They referred me to a private medical oncologist straight away so that I could get into treatment faster. I had my CT scans and first appointment with him within a week. The CT scans showed threads of cancer all through my breast and that it had spread to both my auxillary nodes (underarm) and supraclavicular nodes ( the ones just above the collarbone).
He advised that our medical insurance would not cover my treatment in the private sector and that now we had all the diagnostic work done - that I was going to get treatment just as fast in the public health sector. Two weeks later I started chemo. Six cycles of taxotere and herceptin every three weeks. I shaved my head - well, actually took it down to a number two buzz cut, a few days before my long brown ringletty hair fell out.
After chemo there was still some concern as to whether the cancer in the skin of my breast was under control enough so they decided to do five weeks of radiation before surgery. I found the radiation quite easy compared to the chemo.
My surgery finally arrived in April 2009, by then I was glad to see the back of 'Gertrude'. The date of the surgery was exactly nine months from the day my breast had 'blown up'.
The pathology results came back showing no residual malignant cancer in either breast or nodes. I've got a chance to beat this - we all thought.
I remained on Herceptin until August 2009 - I had been one of the lucky ones, due to the lobbying of BCAC, the National government brought in herceptin funded for a year just when I needed it.
Coming up to the year anniversary was the hardest time for me psychologically - with the recurrence rate of Inflammatory Breast Cancer being so high how did I deal with the threat of recurrence and get on with my life at the same time. I did counselling through the Cancer Society which helped me get to a mind set of 'if it comes back it just means more treatment'. I was going to do one of their 'Moving forward' courses but ...
Gertrude came back....In October 2009 we got the results of a CT scan that showed it had recurred in my internal mammary nodes behind my ribcage. Too close to the previous radiation fields so that meant that our only option was more chemo. At the beginning of December 2009 I started back on Herceptin but this time in combination with an intravenous weekly chemo called vinorelbine. No hair loss this time YAY!!
During this time I had also applied to go back to university to do a degree in Social Work. I had been a stay-at-home mother for a lot of years as my youngest had a part of her 12th chromosome missing (rare - no syndrome name) which had caused her developmental difficulties, but I had done voluntary work with supporting other parents of kids with special needs so knew this was something I wanted to pursue.
With going back into treatment I had to decide whether to still pursue this course of action, and I decided I needed to for my own sanity. I couldn't just be a 'cancer patient'.
So for half the first semester 2010 I was at Uni Monday, Tuesday, Wednesday and Friday and at the hospital on Thursdays getting my vinorelbine chemo with a 'dash' of herceptin thrown in every three weeks. In May we got the news that the node had shrunk as to be invisible and that I could just continue with Herceptin. Of course now that it had recurred once the chances of it recurring or metastasing were high so they implemented a schedule of regular CT scans. August, December....
Unfortunately the December 2010 scan showed something suspicious and my oncologist ordered another urgent CT scan to be done. The less than 1cm suspicious 'something' on my liver had grown to a more than 4cm obvious tumour by March. Oh joy!!! more chemo!!
This time I am on a oral chemo called xeloda - we have stopped the herceptin because it isn't working and the other Her2+ targetted treatment "Lapatinib" commonly known as "Tykerb" is not publically funded and would cost us $5000 a month indefinitely. Not a viable option. So I take five tablets every morning and every night along with panadol and anti-nausea and anti-diarrhoea tablets as well. I have two weeks on the tablets and one week off for six cycles and possibly longer if it is effective. We are now looking at control rather than cure and I have been warned that each chemo we try will probably only control effectively for about 15 months and eventually we will run out of things to try.
I know that is my reality and I have faced the fear and I am carrying on living my life and making the most out of it.