Trying to read up on things before my second craniotomy. Found an interesting series of cases of women who developed GBMs after a prior history of breast cancer (in most cases, more than 10 years later). None were as lucky as me to get both dignoses in the same year. The authors speculated that reproductive hormones may have been involved.
The "exit" times aren't that long, but all these women were older than me, and had worse presenting symptoms (eg seizures, drowsiness). A few refused treatment. I have my relative health, youth, resectable lesion, excellent surgeon, beauty, and the love of many people in my side. So this article shows that GBM after breast CA isn't unheard of, they just don't know the association.
Another link gives soberly factual information about brain tumours.
I like this quote from one of their pages :
Not everyone wants to know if their tumour is likely to cause their death or how long they are likely to live (their prognosis). If you do, (and you know what type of brain tumour you have) there is a page on the likely outcome of brain tumours in our treatment section that may help to give you an idea of what to expect. It can only ever be a guide. No statistics can tell you exactly what will happen to you. If you do want to know about your likely prognosis, the best person to discuss this with is your cancer specialist.Interesting to note that they don't keep long survival data on adults in the UK. Given the high attrition rate, I guess that would be difficult. But its heartening that a small proportion survive more than 10 years. As long as I do my best to not die of an infection or pulmonary embolus, I have resectable tumours, will receive adjuvant chemotherapy and radiotherapy, and I'll get to lie in an MRI scanner every two months for more brain images. I never thought my love of neuroanatomy and neuroimaging would see me ending up as a case study in myself. Bloody ironic!
I love the words on this page, they lessen the power of glioblastoma multiform as the glioma equivalent of Avada Kevada (the famous Harry Potter killing curse, which is how GBM affected me at a very basic level).
http://www.treatingglioblastoma.com/survivor_stories.htm
They say:
While a brain tumor diagnosis can be shocking and demoralizing, many people survive brain tumors, including glioblastoma. Statistics paint a poor survival picture for glioblastoma patients in general, however treatment choices and quality of care can have a direct impact on those statistics..I was thinking today on how the breast cancer diagnosis in January was initially shocking and fear-provoking. All I knew was that the ultrasound had found a lump, and a possible lymph node. I was afraid I was going to die, but knew we had to wait for the biopsy, scans, and staging to get an idea of prognosis. Once all that was out of the way, I was relieved to know it was a large but early tumour, stage IIB, with no nodes or metastases, and estrogen and progesterone receptors. The prognostic outlook is good for that kind of breast cancer. The treatment wasn't fun for me, and is preserved in monotony in this blog, but I managed to get though with my sense of humour intact, and a growing love and appreciation of my family and friends. The breast cancer was a nuisance, but not enough to cower me into submission, or completely transform my life.
Waiting for the pathology results after my brain surgery on the 4th was stressful. We knew the frozen section showed a glioma, but not the grade. I knew, from seeing the scans (which I may put up on the blog one day), that it was a biggie. The kind of tumour that makes you swear and prey for the patient when you call it up on your work computer. The kind that makes surgeons go quiet, and mutter silently to each other. It was growing in MY head. I didn't like the surrounding oedema, mild midline shift, encapsulated appearance. I didn't like the realization that I'd been feeling its effects for some time - only masked in my left arm by the ongoing post-mastectomy changes to sensation. Or was it there many years in my sinus headaches? In hindsight, as well as the facial asymmetry and loss of sensation on the left of my mouth, I'd been biting my left lip when eating, and had become more clumsy with my left hand, breaking one cup, dropping my phone several times. I'd attributed the increasing fatigue to radiotherapy, and it would be impossible to separate it out. I had experienced one or two strange episodes where the kids were being noisy and rambunctious despite my pleas for peace, and I found myself getting unusually agitated with them, almost in a slow-motion way. It reminded me of when my father would sometimes get overwhelmed with his normal pressure hydrocephalus, and wouldn't be able to calm himself down without being removed from the situation. When it happened to me, I thought it was just fatigue, a sign that I needed more rest. I had been having a rather tiresome year...
Now, after talking with my surgeon and radiation oncologist, the fear of dying quickly from this thing has abated. They've got the big one out, they'll get the little one on Wednesday, and then they'll plan my treatment. It might not be curable, but it's treatable, and I keep hearing more and more stories of people who are surviving years after these nasty, aggressive tumours.
I'm finally feeing tired after a long day which was marked by a profound feeling of peace and love (see the trippy SMS I sent in the post before this one). We managed to help David deal with his grief over our 15yo dog dying on Saturday after cutaneous and cns lymphoma - the poor thing had been declining before we left, saving his terminal tonic state for the last few days. I'm glad we didn't have to see him suffer more, that our last memories of him are of him sleeping on his sheepskin rug, like a floppy teddy bear. It's hard to lose a pet, probably harder when you're 11, your mum has just had he cancer, and now has another kind. It's hard to be a grownup as the mum as well, when you're just so glad to be alive, and to know that you won't be dead within one year because your tumour was inoperable or too progressed for them to save you..
This recent event has turned me upside down, and has slid me smoothly into my own skin of the first time in my life. I feel loved and at peace with myself. I know that love is eternal and that we exist as beings of light and love across all dimensions. I know that all will be well. And I finally understand the intersection of my life line and career line on my palm (thus destroying any illusions that I'm a pure logical positivist!). The life line is strong along its course, as is the career line, but then they join, for a while, life colliding with the career while a protective life line shadows at the side, then the lifeline leaves the career and travels on by itself.
I longed for a year off, to focus on my family. Breast cancer provided it. I have been longing to focus on advocacy for brain disorders rather than working as a clinician. Getting a brain tumour creates an opportunity to advocate from another perspective. I wanted our family to have a holiday together, just have fun. Coming to Hobart has given that to us, despite the stress. I want, most of all, to spend many, many more years loving my family and friends, and this wonderful life we are given.
