Fight the good fight?

Have been dipping into some online support groups (e.g. a US one, and at Cancer UK.

Interesting to see how often the “war on cancer” analogy comes up (a point made by others elsewhere too), although for me its more about reaching an accommodation – how do I live my life around this at the moment. The current phase is quite time intensive, but I am looking forward to the time when this is all behind me and I can (hopefully, assuming no persistent side effects) get on with a “normal” life, much as others have done – like the guy in the US who was diagnosed aged 30 and had laproscopic surgery. Note to self: must stop each good news story from making me think “did I make the right decision?”.

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 …

D-day+1 – the decision (delayed)

First day back at work (in the bed + laptop home office) after Xmas and took five muinutes out to try and contact nO to let her know about the decision to have brachytherapy (i.e. internal radiation treatment)- but there was no response from e-mail or voice mail. So we shall have to wait to hear back, and see when we can schedule treatment for.

The decision in the end was pretty clear cut as soon as dK said he thought my LUTS did not preclude the brachytherapy. The risk of impotence seems much lower (must ask nO about the preventive use of viagra) than surgery, and while there is a chance of on-going LUTS (which may be made worse by the radiation, at least initially) it seems the risk of stress incontinence (or worse) is minimal.

The brachytherapy also seems to be much more managable compared to external beam radiation. There won’t be daily trips to Southend, and the side effects seem (with brachy) should be much more localised as the radiation won’t have to travel through the surrounding flesh. Even dO (who you might expect would bat for his own specialism) thought brachy better than external radiation.

Anyway, the bedtime cup of tea has arrived (Mp having returned from choir) and its time to turn in and hope tomorrow brings some news of what to expect and when.

Too many cooks …

So we are off tomorrow for our fifth post diagnosis opinion and another insight into the world of prostate cancer opinions. Nc at work said its good to get a second opinion but this is going a bit beyond that.

In terms of options, we have (in no particular order as they like to say in reality show count-downs to a kicking off …) active surveillance (AS), surgery (S), external beam radiotherapy (EB) and brachytherapy (B) and in terms of opinions we have the following opinions:

        AS       S       EB       B
1       Y        Y        Y        n
2       n        Y        Y        n
3       Y        Y        Y        Y
4       n        Y        Y        Y
5       ?        ?         ?        ?

A fair few people (e.g. Ic and Nm) have said wouldn’t it be nice if doctors just told you what was for the best, although it doesn’t appear to work that way. Ic’s theory was it was about fear of getting sued, although I am not that cynical and think its down to not knowing, or not wanting to impose – given the fine and personal balance between side effects, effectiveness and personal views. Although I do wonder how much dK was struggling last last week between patient choice, and professional judgement – maybe its just a surgeon/confidence thing!

Anyway, after tomorrow we will have completed the first round of opinions – and then we have to decide whether we want even more cooks at the feast and go for a sixth second opnion!