I had a few appointments last week - saw my breast surgeon about the area of micro calcification identified on the mammogram in January. I asked what their advice would be if I hadn't had a brain tumour. They said that the brain tumour needed to be taken into account. I said the brain tumour was stable or shrinking on the MRI evidence. I asked what would be the plan if I'd never had a brain tumour. They said a stereotactic biopsy (i.e., a biopsy done in a mammogram - two painful procedures in one). I said that I'd read evidence that biopsies could produce false negative results. Eventually we agreed that the area of abnormality could be ductal carcinoma in situ, or invasive ductal carcinoma. The first would conventionally be treated with a lumpectomy, chemotherapy, and radiotherapy. The second would be treated with a mastectomy, chemotherapy, and radiotherapy. My weakened bone marrow will not tolerate any further chemotherapy. My surgeon felt I'd already "had enough" radiotherapy.
I said I did not want to find that I had invasive breast cancer after doing my best to recover from an aggressive brain tumour. My surgeon was willing to offer me a prophylactic mastectomy if it will help give me peace of mind. We've scheduled it for the 7th of August.
In the meantime, I need to see my gynaecologist for a pelvic ultrasound of a "large pedunculated fibroid mass" next to my uterus. A fibroid was identified on a CT of my abdomen last year, and it was found to be normal when they did an ultrasound. It seems to have grown since then. I'm not aware of any specific symptoms, apart from a certain tenderness on the left. The CT also showed a fatty liver, which I didn't have last year. My GP and gastroenterologist weren't concerned about it, my LFTs have been okay-ish.
I sometimes feel like my body has been enlisted in some absurd black comedy. I have to maintain my hope that it will be alright in the end, and that sharing the insights gained from my experiences will benefit others in some way.
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.
