I rang my surgeon's rooms today to make an appointment to see her. The first available was in two weeks' time. I rang back and asked them to tell her that I want to have a prophylactic mastectomy on the other breast as soon as possible. We'd discussed it in hospital a couple of weeks ago, and seemed reserved, despite listening to my reasoning, (there was a suspicious area on the last mammogram, and the MRI also showed an area of contrast uptake; doing a biopsy on the area under mammography will be painful and technically difficult, and may miss any cancerous cells; if there's something there, whether its ductal carcinoma in situ or invasive breast cancer, I'd still want it out; I can't tolerate any more chemotherapy due to my bone marrow suppression; I was going to have the other breast removed anyway, for peace of mind). She chuckled when I said I wasn't going to beat the brain tumours only to be snookered by metastatic breast disease…
I may be over-interpreting, but I increasingly think the radiologist who rang me after looking at all my MRI scans when we returned from Hobart was advising me against having a stereotactic breast biopsy the next day because her impression, from seeing the scans, was "here is a 46 yo mother with two children who has an aggressive brain cancer that is likely to kill her very soon". She even said words to the effect of "it wouldn't be fair to put you through a painful biopsy and another operation that would take you away from your family". She insisted that the MRI didn't show any areas of enhancement that would suggest invasive disease, but her report said there was an "area of increased contrast uptake." I know how radiologists speak. That means enhancement. I am probably overgeneralising when I suspect that my surgeon's colleagues who advised her to "wait and see" were thinking along the same lines. They can't help it. It's the way they're trained.
I understand this line of reasoning, but the radiologist and other surgeons have never met me, and can't assume they know what is best for me. While GBM was rapidly progressive in the past, the use of Valcyte has been shown to dramatically slow down progression, and to improve survival odds. I had the horrid realisation today that I was put on valacyclovir, used to prevent herpes simplex infection, in January, and went off Valcyte until I looked them up and realised they were different drugs. That might be why there appeared to be two extra lesions on the second-last scan, and why they had decreased in size on the next scan in March, when I'd restarted the Valcyte. I feel rather shaken, it shows me just what I'm dealing with, and bloody happy that we checked and took the Valcyte again.
Clinicians can sometimes be overly pessimistic and morbid when faced with difficult diagnoses. They sometimes jump to conclusions that further treatment is futile, based on the seriousness of the person's condition, without considering the person's wishes. Clinicians are human, after-all, and aren't immune from shying away from dreaded diagnoses, or from having their reasoning clouded by the awfulness of patients' plights.
If I wasn't motivated to get the best possible outcome in this, if I wasn't informed and able to advocate for myself, if I wasn't health literate, if I was depressed or lacking in hope, I might just give up trying and accept the overriding impression I get from some people that it's all just too hard, that my situation is hopeless, that it's not worth going through another mastectomy because it will put me in hospital for another week, and I'll probably die from the brain tumours anyway.
I'm not dying at the moment. I'm recovering well from the surgery, the pain is getting less, and a medically-trained friend says I'm looking very well. I was 96kg at the end of last year, thanks to the steroids, I'm now 77kg thanks to my 3 weeks in hospital with the twisted bowel. Being closer to my healthy weight range is good for my health and recovery.
With the kids being at school, hospital isn't a bad place to be, especially if it's ridding my body of an unwelcome visitor that could. Ben brings the boys to visit in the morning and evening, and they've got into a good routine with school and homework. I won't have to worry about that breast again, and they'll hopefully catch anything before it spreads. If the lump (which I can't feel) is cancerous, I'll need radiotherapy to that breast, but if it's not cancerous, I won't.
I'm feeling like swearing at the moment. I can see how some cancer patients die because pessimistic clinicians think that some treatments are futile. Though I've also heard of some dying patients being treated beyond what is possible - care for people with life-threatening illnesses is obviously a very difficult area, personally, emotionally, ethically, and clinically. I'm not meaning to judge anyone here. But I'm alive and kicking, and am not going to give up anytime soon.
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.
