Monday, March 10, 2008

Preparation for consultation

This could be a boring post to anyone who is not battling breast cancer. I had researched what treatment was available in readiness to discuss with the surgeon. On reflection it was a complete waste of time, he didn't turn up. Skip forward a day unless such preparation is of interest. Don't expect the UK NHS to have time to discuss such matters!

I guess one could just sit back and trust the doctor to give one the best possible treatment. I am 90% sure he would, but prefer to understand what is happening. Look up proceedings of the St Gallen 2007 conference on "primary therapy for early breast cancer" for good information on what current best practice is. I do not attach a link as I believe the medical staff restrict access to this information to medical professionals.

To review the possible outcomes I expect we will be told on Wednesday in ascending order of risk:

1) we could be told all clear, no need for extra treatment - highly unlikely
2) could be told all clear, we need radiotherapy and hormone therapy - expected result.
3) could be told we need a second lumpectomy to get adequate cancer clear margins - 10% risk
4) could be told cancer found in lymph system, needing further radio or chemo therapy - 10% risk
5) could be told the impossible has happened, there is more extensive cancer than expected, immediate chemo needed....should be impossible after what we have been told already, but lets prepare to handle the worst. The aim is to remove the cancer without disturbing it to minimise risk of spread around the body via blood or lymph systems. However every biopsy, guide wire etc. raises this risk and Jan's two guide wires were a bloody shambolic mess. Sorry, I am not swearing here, the ultrasound was covered in her blood, and what the nurse assured us was impossible happened to Jan.

Option 1: possible, see http://www.cancerhelp.org.uk/help/default.asp?page=10250#prime

Option 2:
To prepare for option 2, one needs to know whether cancer is estrogen receptor positive. 80% are, and in these cases Tamoxifen is effective for the first five years, expect to take Tamoxifen for at least 5 years, and worry about recurrence once that is stopped unless replaced by aromatase inhibitors.

In 15 - 20% cases the cancer is HER2 receptor positiive, where herceptin may be a wonder drug. Is this cancer HER2 positive? http://www.cancerhelp.org.uk/help/default.asp?page=19867
If so will NHS pay for it? It believe it costs up to £25,000 per patient and many NHS trusts refuse to pay for such expensive treatment. http://www.bmj.com/cgi/content/short/333/7578/1118?ehom= The BBC ran a report http://news.bbc.co.uk/1/hi/health/6176008.stm It also has nasty effects on the heart.

If radiotherapy is given, the doctor has already stated he favours hypofractionation (the use of fewer, higher fractional radiotherapy doses. This eases our transport to hospital, cuts cost to NHS, increases risk of cosmetic damage to skin, yet seems to have same effectiveness in preventing cancer recurrence.

I would like to discuss a safer option in research http://www.cancerhelp.org.uk/help/default.asp?page=10250#targit

Option 3: I want to know how they find site for next incision, after the previous shambles in using wire guidance that needed two wires. I presume the scar tissue shows up easily, but want re-assurance

Option 4: I would hope we just need radio therapy, without chemo. This link supports this view
http://annonc.oxfordjournals.org/cgi/content/full/16/3/383

To get a Christian perspective, let me quote John Piper "you will waste your cancer if you take comfort from your odds rather than from God." In 2 Corinthians chapter 1 verse 9 Paul says "in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead." We need to trust solely on God.

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