Met with my new oncologist this morning.
First of all I have to say that Ana is fabulous. Very patient, very straightforward, very clear … in fact, I spent over an hour talking things over with her. Given that she is the “sub-directora” (what’s that in English?) of the oncology department at my hospital, part of me felt a bit guilty about taking up so much of her time. But if I hadn’t kept asking questions we would never have got to the place we are now with my treatment. Which is still very confusing but, as Ana said, at least I will feel like I am doing everything possible…
Susan (Pip) is out of town today and Pablo was unavailable, so Nog came with me to the hospital. He’s not the best “back-up” to have with me simply because he doesn’t understand Spanish very well, but at least I had company getting there and back, as well as in the dreaded waiting room. We played hangman on the iPhone while we waited and I also checked my email, blog and twitter (even sent a tweet!). And after about an hour I finally got in to see Ana.
We started off by going over my case from the beginning. Talked about the first emergency operation, the liver mets and post-op chemo, the “open & shut” op in September and then the last operation in November. And much like Ricardo (head of nuclear medicine and my friend) has told me, Ana said there is nothing “typical” about my case. Basically, it was considered that after the stage 4 colon tumour diagnosis last May, with metastasis to the liver (2 tumours were found by PET scan), my prognosis was not very good for surviving beyond five years. So after two months of chemo, when the surgeon opened me up in September to remove the liver tumours, he was aghast to see my peritoneum covered in “lesions” (apparently scattered like buckshot), assumed the worst and closed me back up again without touching my liver. And at my next oncology appointment I was told I was inoperable and that chemo might slow down the inevitable, but there was no chance of a cure. When I asked how long I might have without chemo I was told “maybe a year”. Remember that one? Goddamm Idiot woman hadn’t even seen my biopsy results when she told me that!
Of course, now we all know that the biopsy reports all came back negative and the peritoneum lesions turned out to be scar tissue, but a third operation was recommended to remove and retest some of the lesions on the peritoneum, as well as do some “clean up” work on my liver, using laparoscopic surgery. Still meant I had to be sliced wide open again though, to get at the peritoneum lesions, but at least my liver didn’t have to get hacked to pieces.
Which brings me to the oncology appointment I had with the Idiot mid-January. She said “oh hey, good news, you have no evidence of disease and so you won’t need any more chemo!”. And I thought … wtf? So I frankly told her that, not only did this go against everything I’ve read about stage 4 colon cancer, including the experiences of people I’ve met on the Colon Club forum, but that after she had given me a death sentence without even checking my test results, I was not inclined to trust her opinion any further. At which point she said – and I quote! – “Well, you can always have more chemo, if you want to”.
If I want to??? What sort of fucking medical advice is that?
In the end we agreed that I would have another CT scan and blood work done, after which we would decide what to do next. But no way no day was I going to leave things like that, so I arranged to talk with Ricardo one day at the hospital (Susan was with me for that one) and after that it seemed okay to be doing the “wait and watch” thing, with a CT scan and blood work to test my “markers” every three months. As Ricardo very plainly put it, the question wasn’t if I was going to have a recurrence, it was about how to deal with it when it happened. Later Ricardo called me and told me that all my results came back normal. And so I felt like I had been given the “all clear” at least for three months.
Fast forward to this morning … Ana and I were discussing my file in front of her and she said that according to the report filed by the Idiot, she and I had agreed to do three more rounds of chemo, and that she had also arranged for me to have a colonoscopy. Huh? A colonoscopy was never even mentioned. And no way we had decided on further chemo. Aaargh. I said as much to Ana, trying not to explode with anger & frustration and then she asked if I’d had the CT scan done. Turned out my last CT scan and blood results were missing from Ana’s file, so she got right on the computer and printed copies for both of us.
Well, imagine my surprise when Ana told me that although my blood test results for cancer markers were normal it didn’t actually mean anything because, upon comparing them to previous tests, they have always been normal, even when I had two tumours in my liver!!! So she basically said that this test was pretty much useless in my case. And she reckoned that the CT scan results were probably not very reliable either. Two seconds later she was on the phone to Ricardo saying that I needed to have another PET scan done asap, and he said they could probably fit me in next Thursday (he’ll call me on Monday to confirm). And I’m also to have a colonoscopy done asap … will know more about that next week.
You see, at first Ana thought that maybe doing three more rounds of “just in case” chemo might be the best way for me to go because, as she said, I seemed like someone who wanted to feel sure they were doing everything possible to ensure a positive outcome. Though she also admitted that there was no scientific evidence to show that doing “just in case” chemo after having been pronounced NED (no evidence of disease) for five months would actually make any difference at all in terms of the chance of a recurrence. And she was also clearly in agreement with Ricardo that I would most likely have a recurrence (and even more likely, recurrences), which is something I’ve more or less come to accept.
The difference is that at least Ana will answer my questions. I told her I wasn’t interested in false hope and that, although there are often no clear answers regarding cancer treatments, I at least wanted to have enough information to make my own decisions. I told her that I am willing to listen to medical advice but it is ultimately my decision about which treatment (if any) I agree to, and that I want to be as informed as possible before making these decisions. And I think she respected that.
So here I am back in limbo! But that “wait & watch” thing really felt too passive, somehow. It just didn’t seem like there was enough being done to make sure they’d catch a recurrence in time to treat it effectively. Which actually turned out to be the case. So I may now end up having PET scans every three months and die of radiation poisoning … but you know, if I just get ten more years I’ll be happy. Especially as I have no pension plan.
Going to go snibble cats now. Thanks for listening.