Tuesday, April 20, 2010

Off to the familial cancer clinic

G'day all!

Today I visited the familial cancer clinic at Monash Medical Centre, Clayton. It is only 15 minutes drive away, less really, but of course I caught every major set of lights on the way. Then I drove around and around and around and around and AROUND the carpark, a paying carpark, looking for a carpark! (It would've taken less time if I could take the train but I am supposed to avoid crowded places and the train is often busy and usually has people with colds on board. Blighters!)

Eventually I grumped at the car park attendant and he let me out. Then I drove into the familial cancer clinic car park, double parked the car and told them I'd be even later cos I had just spent 15 minutes looking for a carpark and now had to go park out on the streets somewhere.

I found a carpark on the street very easily. I know where to look. But I was 20 minutes late and rather crabby.

So I met with one of the doctors and an intern. Some people are very "private" about their cancer stuff but I've turned into a hussy. Yet another doctor wants to examine me? Fine! Go ahead! Everyone else has. You want to help an intern get through their degree by sitting in? Fine! Go ahead! I've got nothing to hide. (Though I did keep my cap on, even though I was frying.)

So we discussed my cancer. My family background is apparently not a big issue (Mum died of bowel cancer, her only sibling, a sister, died of breast cancer). They both died at an age that is not an issue (unless of course other members of the family also died around the same age. But there are no other rellos on that side of the family that we know of who have had cancer).

The biggest issue is my cancer is triple negative. Triple negative means that it does not express hormone receptors and is HER2 negative. Oestrogen and progesterone can drive some cancers, so women who are have cancers that are hormone receptive are given tamoxifen (or other anti-oestrogenic chemicals). HER2 is a cell receptor that gets stuck on in some cancers and helps the tumour cells grow rapidly. Herceptin is given to treat HER2 positive tumours. My cancer doesn't express either of those so I am not going on tamoxifen or herceptin.

The reason for the familial cancer testing is because of my triple negative cancer. A high percentage of women with a mutated breast cancer gene BRCA1 have triple negative cancers. But having triple negative cancer doesn't mean I carry BRCA1. It means I have a small chance of carrying the gene. However that chance is high enough that I am getting government sponsored testing.

If I do carry a mutated BRCA1 it is almost certainly a new mutation because of the lack of a strong family history of breast cancer. Also if I carry it, I am much more likely to have more go rounds of cancer, which may make me consider a prophylactic bilateral mastectomy (and oophrectomy/hysterectomy since ovarian cancer is also on the cards). So I need to know if I have a mutated BRCA1 (or 2) gene before I have surgery - why not kill two birds with one stone, so to speak. But if I don't have a mutated BRCA1 gene then this current cancer is likely to be an isolated event of unknown origin. Anyway, they are arranging expedited testing as it usually takes 8 months to get a result back. If I got the testing done today, then they were hoping to get a result back in 6 weeks. Then i go back for the result.

So I toddled off to the pathology lab, waited for 45 minutes in a public waiting area (I'm terrified of crowds now cos of the low immunity - this is the week where I basically have little in the way of an immune system), knitted frantically on a shawl and then had to have one of my poor right arm's veins skewered. My right arm has one vein in particular that will hurt for some time after I finish chemo - one of the chemo nurses says the epirubicin may have leaked from the vein, causing tissue damage. It's been seven weeks so far and I can still tell you exactly where the vein runs. Touching the affected areas can feel like chinese rope burn or an electric shock, especially if I am not expecting it. My wrist is not as flexible as it was and if I have not moved it for a while, movement again feels like a shock. If I lift too much heavy stuff with it, it is sore the next day. However, I am not allowed to lift more than two kilos with my left arm (the dominant one!), though I often do without thinking. So poor Mr Right Arm cops a lot now. Makes things interesting!

After doing the clinic, I came home, made lunch and then sewed the binding onto my new quilt. Alas I have to hand sew the binding down on the back of the quilt and I can't find the fine sharp needles that I know are somewhere, only the thicker ones that are sooooo hard to push through the fabric and batting.... Pathetic isn't it that I whine that one of my fingernails now hurts from supporting my finger's attempts to push the needle through the quilt. It is more annoying than the phlebitis in my arm. Or the remaining vague sensation of indigestion...

Did I share this pic with you?

2303_gumflowerbeebots
I love the bee bottoms sticking up out of the gum blossoms.

And we've had a few dragonfly visitors recently. I only saw this one because Cheshire was transfixed by something on the conifer...
1704_dragonfly

anon!

5 comments:

  1. I am so with you on the car parking situation. They are making a new Radiotherapy blcok here and a new carpark, so oc course they ahve dug up and cordoned off all lots of parking spaces. I drove around fro 25 minutes till I found a spot today. It costs $2-50 or 70 for an hour, regardless of whether you need the whole hour or not. I don't think sick people should have to pay to have doctoring inflicted upon them.
    Oh yes, willy-nilly I let interns, nurses etc practice on me. I am a medical hussy!!! Hope your bits are all feeling better and that your results are back quickly.
    I think complaining about the little things takes one's mind off the big things and I don't remember the lovely photos!! So they are very nice to see!!

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  2. The medical hussy bit makes me laugh - you get like when having a baby - you want to see up my hospital gown - be my guest - oh you are just here to fix the TV? - who cares! Parking at MMC is a nightmare. There is good street parking nearby if you know where to look.

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  3. Parking is such a pill no matter where really, there's always a good spot but you just have to know where it is! Your arm pain sounds like nerve damage rather than tissue damage have you had them check? Hoping like heck that your genes are behaving themselves and stay that way.

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  4. Sorry, I can offer no solutions for your parking/chemo situation, but I do have an idea for the pushing the needle through the thick fabric and batting: a thimble?!

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  5. I have a suggestion for your parking woes. It might be worth trying. If there are private houses nearby, drop off a note asking them if you can rent their driveway for a nominal fee for all the times you think you will be needing it. Include contact info and you might hear back from someone who is gone during the day who would be happy to let you use their driveway for your appointments especially with prior arrangement before each appointment.
    My hubby used to live in Queens, New York City and he used to rent a garage from a private household in his neighborhood (they didn't have a car at that household)which worked very well for him except for inconsiderate people who used to park illegally across the driveway :-/

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