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.
Wandering Coyote said:
Oh my God, Az, what a ridiculous hassle! I am glad to read, however, that at least you seem to have found a doctor who is on the ball and respectful of your wishes. I’m only sorry you had to go through so much in order to find her…
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Teuchter said:
Good grief! It’s all so bloody complicated. Is your head spinning with it all?
The positives I can see from what you wrote are that you now have an oncologist you can trust and have sensible conversations with – and they’re willing to keep you under fairly close monitoring which should mean that if there is any further recurrence, it can be dealt with pronto.
I suppose the other side of that coin is that, every three months, you have to think about it again, and getting away from it will not be easy.
You’re not alone in this. You have wonderful friends in Sevilla – and you have us internet wierdo types too.
*hug*
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azahar said:
Hi WC. Yeah, it’s a shame I had to go through so much crap before finding an oncologist I could trust, but hey, at least I have one now!
The three-month monitoring thing was decided back in January, Teuchter. Which is something I think I’m dealing with okay. But I was very surprised to find out today that it was useless to carry on with just blood marker tests and CT scans … damn good thing I found out!
Yes, head is spinning.
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bigbadjohnnyp said:
Hellfire!
I’m not surprised, I think my head would have unscrewed!
Frequent, appropriate, checks should mean that if and when there are recurrences they get picked up and dealt with. I think that is a key to hang on to. If you didn’t have that reassurance, then not only might you be wondering what was going on inside you, but also having to deal with the “what if they find something and it’s too late to deal with it” scenario.
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noggin said:
I was a bit surprised by that, too, since they seem to be the main monitoring tools, and presumably work reasonably well in most cases.
But nothing standard bout our az.
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G Eagle Esq said:
Courage, ma Brave, courage
AND
All the Best
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mudhooks said:
Hell’s bells…
It’s just as well you have someone coming to appointments with you, if only so that down the line, when the doctor writes the complete opposite of what they said, the other person can corroborate that what you heard was what the doctor said…
Honestly!
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Beth said:
Weird about the blood marker tests and CT scans. It’s hard getting such different information from different people and trying to figure out what to trust. You sound like you’re processing it all rather well. As usual.
Keep yer chin up, girl.
Also, take your damned lexulous turn.
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healingmagichands said:
Well. I’m SO glad you have an oncologist that is sensible, intelligent, respectful and takes the time to answer all of your concerns. The Idiot should be at the least fired, and also put in the stocks in the public square so people can pelt her with rotten fruit. I can’t quite suggest that she be shot at dawn. . . rather against my principles and all. But she should CERTAINLY have to experience some negatives, especially since she put things in your chart that were NOT true.
That being said, I am QUITE busy now visualizing you stumping all them experts for the rest of your life by NEVER EVER having a recurrence.
So there. And Blessed Be.
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healingmagichands said:
Oh. And keep exercising and thinking positively and eating anti-oxidant foods and letting go of stress and all that other good stuff that supports your immune system.
And feel blessed every day for the fact that all the experts that predicted your demise were so very very WRONG.
And by the way, Happy Pi Day tomorrow. (I explain this in my blog today.)
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silverstar98121 said:
Glad to hear all this. Hey, some of us have to be on the tail ends of the bell curve. Hope all goes well, and I reiterate Beth, take your lexulous turn. Should have done it while you were twiddling your thumbs at the hospital.
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zoomer said:
I too take all this as positive. Too bad you’ve had to deal with the crap end of the medical stick but now you are the one with your hand firmly holding the clean end.
Speaking of crap, I’ve had the colonoscopy thing done- twice! I know it won’t be as bad as the other things you’ve been through, but after all it is perhaps the definition of a pain in the ass. I especially fondly recall the chemical enema, where you feel like your head is caving in from the force out your rectum. And as I mentioned to the ‘inspector’- I work in the business and I KNOW they make smaller cameras!! And he never kept in touch….. not even a phone call. 🙂
This too shall pass, however and I know you’ll survive more than ten years, lack of pension or not. Hell, I’ve got less than a decade before federal law makes me retire and I need someone to come visit when I finally have some time on my hands!!!
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dragonqueen said:
Well, tests are a help, an idea, a hint – but never the indisputable truth. Something I’ve spent ages to tell my students (and colleagues too).
None of us can be sure about waking up tomorrow- and we’re all going to die. The latter is after all the only thing you can be sure of.
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Kim said:
Holy moly. So I have to ask, are you confident in the initial diagnosis? So much of this seems to be … I don’t know … inconsistent? I might even consider going for a third opinion in this case just to have a tie breaker – of course you could also end up with a third plan, which would send me leaping from the nearest bridge. The bright side, your new oncologist seems like a gem and if you’re comfortable with her, I know that’s worth so much.
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azahar said:
As my Colon Club buddy Gaelen pointed out (when I posted a slightly edited version of this post over there) …
And I think I agree with that. And so, although things have seemed quite inconsistent at times, as you pointed out Kim, the treatment process does feel like it’s finally been taken into good hands.
The stage IV with liver mets? Seems to be no doubt about that one, Kim. What everyone can’t seem to figure out is how all my tumours disappeared after only three rounds (two months) of chemo.
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raincoaster said:
Wow. I really don’t think it’s possible for you to have experienced more of a runaround, even if it wasn’t deliberate on everyone’s part. Thank god you’re an active, enaged patient and you push for answers. You’re saving your own life when you do that; it’s just a shame you have to do it over and over!
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B'Elana said:
Sorry, az, haven’t caught up here for ages now (due to a few things going on here). I’m glad you’ll now have an oncologist who listens and seems to know what she’s talking about. For everything else, I’ll keep my fingers crossed, as always.
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Linda aka Beatrice said:
Yes, I’m only catching up on this now, as I had ‘pooter problems at home.
Wot they said – thank goodness you have Ana to try to help make sense of it all.
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Jenny said:
You sound like my niece … same story, different cancer. No one really ‘knows’ what to do, do they. You’re smart. You will do what is best for your body. Cancer sucks.
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Timothy (TRiG) said:
What a rigmarole!
One would have thought that a doctor willing to answer questions would be less hard to find.
Do well, az.
TRiG.
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