I was diagnosed with invasive ductal carcinoma of the left breast on January 23rd, and I will be having a mastectomy and secondary lymph node clearance on Thursday in Launceston.
I had bone scans, CT, biopsies, and MRIs done in Melbourne last week, and it's a relief to know that my bones and other organs are clear. It's likely that I will have chemo, radio, and hormonal therapy to get rid of these traitorous cells, and I'll work out some way to provide updates as I move through the treatment phases. My doctors say the prognosis is looking good, and my friends and family have rallied around to help.
I was worried about textural changes in my breast 12 months ago. I had a mammogram, which showed very dense tissue, and an ultrasound, which was normal. I continued to be concerned, but had been reassured by every doctor who palpated me over the last 8 years that I had very dense breasts, which is "common in younger women." My GP referred me to a breast surgeon for an opinion in June after there were further changes in breast appearance - the surgeon did a fine needle aspiration, which only showed fibrocystic changes. I went back to the surgeon in October, feeling like a hypochondriac, and asked if I should have another ultrasound or an MRI, which I'd read was more sensitive than mammogram in cases like mine. The surgeon said I should just repeat the ultrasound and mammogram in January, which I did, and here I am. The mammogram was still normal, the ultrasound picked up one lesion. The MRI detected 3. (nice symmetrical distribution at the 10 o'clock, 12 o'clock, and 2 o'clock positions).
Turns out, MRI is recommended for very dense breasts, and it's not covered by Medicare. But $405 out of pocket for images showing the location and size of my tumours is worth it - there's 4cm between the chest wall and the closest lesion, so my radiation oncologist says there will be a good surgical margin to the resection.
I had a range of blood tests yesterday, haven't got the results back yet, but if I'm still anaemic after last year's horror menorrhagia, I may be having an iron tranfusion before surgery tomorrow. I also met a lovely plastics and reconstructive surgeon who talked about reconstruction options, which will be about 12 months after radiotherapy, if I need it.
It's all so surreal, the thought of having polyurethene-coated silicon mounds implanted under muscle in my chest - never knew that you don't need to wear a bra after breast reconstruction (the muscles make an inbuilt pocket to hold the implants), or that they'll need to be replaced every 8-10 years. Given the risks of cognitive decline after anaesthesia after age 65, I may go for the flat-chested flapper look at 64, rather than have another general anaesthetic! The surgeon reassured me that women in their 60's like their breasts as much as younger women do, and that there may be fat implants by then - the latter sounds better, I hope climate change doesn't disrupt medical progress.
And to add to the joy of this complex picture, I may need to have an endometrial ablation during the surgery. I'm seeing my gynaecologist today to talk about options. The path results on my biopsy showed the tumour has oestrogen and progesterone receptors, which means it may be good to remove my progesterone-emitting Mirena coil and do something to make sure I don't have heavy periods during chemo. Of course, I'm told, the chemo will kill off my ovaries, so I won't have periods after the chemo, but becoming anaemic again during chemo won't help my recovery. I guess an ablation will heal quicker than a hysterectomy - but I don't want to have either. I don't want to have cancer either - but you often get what you don't want, it seems.
Aarghh! So much info to assimilate! I just wanted a quiet year, de-cluttering and renovating the house, doing the garden, focussing on my kids, family, and friends, going overseas... Looks like I'll be spending a lot of time at home... but won't be doing much in the garden because I'm not allowed to get an infection from the rose thorns.... really? I need to wrap myself in cotton wool? That will take a lot of getting used to
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
