Networking and the power of people

Found another social networking site (Ning strikes again!) on prostate cancer, but got involved as they have a group section on younger men which they clealy see as starting anywhere from 65, or 55 or 50 and on down.

I am clearly so detatched from my situation – the main thing I took from this group is that there are people younger than me (e.g. 39) and in much worse shape than me with more aggressive (gleason 9), more advance cancer than me. Having said that, there are other people who have struggled with trying to make a treatment decision like me.

It would have been good to find this site earlier as there are people whose experience it might have been good to build on – like the guy who is 58 and been on active surveillance for 6 years. I wouldn’t call it full blown “purchase regret” but it feels like I am continually having to defend my decision to get treatment and remind myself why I am doing this.

In the meantime, I should put this stuff to one side and get on with some work. Feels like I have a mistress who is constantly trying to distract me from my real life, family, friends …

Men, Women and Emotional Blackmail

The cover story in the New Scientist distracted me at work yesterday, throwing doubt on my treatment decision and reminding me of a gender issue which came up when seeing dK.

The (nano) second of doubt came from the idea that genetic tests could be used to tell “tigers” (i.e. aggressive cancers) from “pussycats”. If this test were available, then perhaps I could ultimately avoid treatment – so perhaps active surveillance is not such a bad idea if there is something worth waiting for. But then again, how long would I have to wait for this kind of test – and would it then just tell me I had a tiger anyway?

So the doubt didn’t linger and when I spoke to nO I confirmed that I definitely wanted the brachytherapy – although something else I read raised the prospect of a different type of (High dose) brachy – but again this seemed to have its own issue. So we are all systems (almost) go – just waiting for those dates.

As for the gender issue, the New Scientist issue was discussing the fact that the same type of cancer might occur in different places in different people. So one woman’s breast cancer might be the same as another man’s prostate cancer. Which brought back memories of dK trying to persuade (brow-beat?) us into having treatment by saying wouldn’t we want treatment is Mp had breast cancer?

Talk about (attempted) emotional blackmail – this felt like a really low blow. While treatment seems to be easier for (at least for some) women now, with the advent of lumpectomies and less impact, I am sure those women faced with full/double mastecomies (particularly preventative ones for genetic reasons) take an equally long time to decide if and when to treat. I also read something somewhere (lost the link) in a research paper suggesting that the side effects of prostate treatment (i.e. impotence/incontinence) were not major – I’d like to see the authors of that study live with either.

So while I could comment (i.e. ramble on) some more about gender differences in cancer I don’t a particular axe to grind (unlike some other bloggers I have seen) – for me the key thing is don’t you just love the sensitivity of the medical profession some times!

Wait or not wait – active surveillance (again)

Saw surgeon today who would operate (i.e. perform the radical(?) prostatectomy) on me if that was the option we decided to take. Adding his opinion into the mix, we get the updated leader board (except its not – and this isn’t strictly come dancing, aka dancing with the stars) as follows:

	AS	S	EB	B
1	Y	Y	Y	-
2	-	Y	Y	-
3	Y	Y	Y	Y
4	-	Y	Y	Y
5	Y	Y	Y	Y

Thinking about active surveillance as an option (and the preferred option for low risk prostate cancer according to NICE – apart from my age – and whether or not you agree with the NICE guidelines like dK) I can see the following pros and cons to waiting:

• it might avoid treatment altogether – although the Royal Marsden study suggests the chance of unnecessary treatment is likely to be less than 30%
• it would allow us to schedule treatment for a more convenient time – but when would that be and what’s more important than your health?
• the delay might allow the development of new treatments with less bad side effects – although what treatments would these be? I guess HIFU and cryotherapy may become more accepted but we have not seen/heard positive reports on these treatments
• by delaying treatment, would this push back the time when the cancer might reoccur – but this is a rubbish argument as I am sure if I live to 75, what difference would it make if cancer reoccurred at 55 versus 65 – and this assumes a 10 year wait before treatment

All in all, while I am not in a hurry to treat, I am coming round to the view that the some treatment is much more likely to be needed than not. Who knows what the chance of avoiding treatment altogether is, but I am sure it is a lot less than the chance of having side effect free treament, particularly given the Sheffield and Malmo studies. Tried to talk about these studies with dB today but he didn’t seem that interested and like dO and dB seemed to be relying more on gut instinct. But if it works for them …

Still need to decide if formal second opinion (from outside the MDT) would be a good idea and then what kind of treatment to go for. But this is something for after Xmas I think.