Met second surgeon (S2) on Thursday. I thought I was just going for a discussion and maybe to re-schedule date planned with Surgeon 1 (S1) in order to fit S2’s diary. And that’s how it started out. S2 had read my article, and said that she and her colleagues followed the screening programme closely, and suggested that now we should focus on me as an individual rather than on the population. B said afterwards that he did not feel she was any more open or questioning than S1. He could be right; maybe all she has over S1 is the fact that she’s a woman (and I do think that counts for something). She was certainly direct and rather impassive, and she didn’t have any alternative approach to suggest other than surgery. I wasn’t really holding out for much else. So we agreed on one day’s delay, and she asked to examine me and did take some measurements and offer to remove my mole, neither of which S1 did. Then she said she would like to have further ultrasounds done just to check my cysts (harmless). I had no problem with that, as I perceive ultrasound as non-invasive. But when I eventually got into to the u/s room, the radiologist looked at the pictures from Bradford for a long time, and then said she thought she’d like the senior radiologist to do this one. Another wait, a lovely radiologist, a scan, and then she said she thought I should have a further mammogram as there was another area to check. I raised an objection when I got into the x-ray room (3 x-rays in 3 months, plus chest x ray as part of pre-op!), but did consent – how hard is it to take a good decision with your clothes half off –. And that mammogram led to a further meeting with S2, with the recommendation of a further biopsy (9 samples this time), and the suggestion that this area could be more IDC, or DCIS, for both of which the recommended surgery would be a mastectomy. S2 said that no bc surgeon would do a lumpectomy on the original lump and just leave the DCIS. So bang goes my posturing about not going near a bc surgeon for DCIS. Results on Monday 11th.
Never has the tired phrase, “The road to hell is paved with good intentions” ever seemed so apposite. Only, it’s not my intentions, but those of the medical community. All the people I have dealt with have been kind and with good interpersonal skills (bar the two surgeons – just not on a par with everyone else). I have to give them all credit for the efforts they made to accommodate me during this long afternoon, during which S2 saw me no less than three times, and did, I noticed, go into the radiology room to look at my pictures with the radiologist. I know no harm is intended; but I feel I have been hunted down and cornered, starting with that bloody screening invitation which I did not ask for and which did not tell me all I needed to know. I did not go looking for help, They came looking for me. As Hazel Thornton points out, this is a reversal of the usual doctor-patient relationship. As a consequence, I am not grateful; I feel each test and intervention as an imposition, not a response to my need. Many women writing on the bc forums describe the cancer as the enemy. I have yet to see it like that – my enemy at the moment is the medical establishment. I did not know I was so anti-authoritarian and paranoid. The cancer, to me, is a condition that has the potential to do me serious harm – but may not do so, even if it is in two sites, not one (prognosis is apparently no worse).
However, if the results show a further growth (or actually, even if they don’t), I know I have not the psychological strength to go against the standard advice (I am worn out already, 8 or 9 weeks into this whole sorry saga). This is despite the fact that Michael Baum, towards the end of his book, suggests that dormant metatastic cancers may actually be activated by surgery (he suggests that there is evidence that cancer is not linear in progression, spreading out from one site, but actually quite chaotic, and that someone with a primary cancer may actually already have growths in other places in the body, but that these also may never come to anything). So I could end up being killed by cancer treatment, or I could end up being killed by cancer. Only nobody will ever know which was the case. Or I could end up being cured. In any event, I will be butchered in the process. The outcomes I am closing down are the possibility of the disease progressing because I do nothing, and the possibility that my body (in which, I now realise, I have to date had considerable confidence, despite my notable lack of sporting prowess!) could heal itself – if left well alone. But I just can’t do that. Not quite brave enough.
I said to B a few weeks ago, that I have been brought hard up against the reality that there is no certainty. We all have to live our lives as if there were. Otherwise we would be paralysed. We learn to trust probabilities, but actually, that’s all they are. I must, somehow, learn to trust the medics again. I do trust their skill, their kindness (on the whole) and their intention. But I would actually trust them more if they would acknowledge the provisional nature of their knowledge base – if they would say to me, “Look, the treatment we offer in 10 years time will be different. Yes, we can only do what we think is best, here and now. We have reason to be humble.” We all do.