I have no idea what to think or how to feel.
Went to see the oncologist with Pablo yesterday and really had no idea what to expect. Though I assumed (because I’d been told this by the surgeons after the last op) that I would be put on “clean up” chemo again, probably for 5-6 months. Wrong!
The first thing the oncologist said to me was that she had GOOD NEWS! Given that this is the same woman who told me last October that I only had a year to live before she’d even seen my biopsy results, I was understandably wary. And so, she started off by telling me that all the biopsy results from the November operation had come back negative (which of course I already knew) and then said that no further chemo would be necessary. To which I replied … WTF??? As you can imagine, quite a long discussion ensued after that bomb was dropped. But seriously … WTF???
In short, this woman told me that I could have chemo again for a couple of months “if I really wanted to” (I kid you not, that’s what she said) or I could get a second opinion. So basically, second and third opinions shall be forthcoming later on today. I have a follow-up appointment with my surgical group this morning and afterwards Ricardo (of The Team) will be waiting to have a talk with me. I’ll also be getting a blood test done today and a CT scan is scheduled for January 29th.
Trust me, I want all this to be true. I want to be officially NED (No Evidence of Disease) and I really really don’t want to have to go through chemo again. You can’t imagine how much I am aching to have my life back. But I also want to feel confident that my doctor is making the best decision for both my present and future, and I just do not have any confidence in this woman, nor in any of the doctors in my oncology group.
Anyhow, I wasn’t going to post anything here until I saw the surgeons and talked to Ricardo, but I just had to vent a little.
I mean, did this woman think I was just going to smile and say “oh what wonderful news!” and walk away with no further questions or treatment? Don’t get me wrong … of course I am very happy that the biopsies all came back negative, but I’ve known about that now for a few weeks. What I want and need to know now is that I am going to get appropriate treatment and not just have my doctor babble on about how she’s never seen a case like mine in her life as well as get all defensive about the time she told me I was going to die (she actually tried to blame that on the surgeons – *spit*).
Whatever happens, I know that I’m going to be tested every three months for the next five years, and I also know that at any time the cancer might reappear. But dammit, if going through “clean-up” chemo now would help reduce the risk of recurrence, then I’ll do it no matter how awful it is. And yes, I understand that even doing that might not prevent further metastasis. But what I really don’t want to have to deal with is bad advice right now. I have to make a really tough decision in the next few days and I damn well want – NEED – to feel like I’m working with the best information possible.
Okay, rant over. Stay tuned for further developments…
(and thanks for listening!)
casa azahar 
Well, I have no advice to give you and it sounds like you have everything under control. I don’t blame you at all for wanting other opinions. I’d be getting second & third opinions, too, if I were you, after that experience. You sound very rational and logical and are totally within your rights!
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Sounds like they’ve thrown some extra corkscrew turns into that roller-coaster ride.
Given your understandable lack of confidence in the oncology person, second and third opinions seem like a very sensible way to go. Would you be able to see a different oncologist for their take on it?
Bon chance, cherie.
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Wow. That is…huh. I can totally understand the need to vent. I hope you can find an oncologist you can trust.
(In other news, I nominated you for a “2008 bloggie” award in the “best European Blog” category. )
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Wow, don’t know what to say to that.
az, please get those other opinions, and if they suggest that further chemo may lessen shocks in the future, I hope you consider it!
{{{hugs}}}
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I wouldn’t trust that woman, either. Not even if she said the sun rose in the east. Definitely get more opinions. And it’s OK to vent here.
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Yep, get those second and third opinions, definitely.
*slaps bad oncologist*
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I think it is pretty clear that, as good a prognosis she gave you, you can’t put any serious weight in what she says to you.
Definitely 2nd a 3rds are needed.
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geez, wtf!! im wondering what cracker jack box she pulled her degree out of! isn’t there any place where u can go to make a formal complaint against her? i mean seriously, she’s an idiot playing with people’s lives! as for getting more opinions, i say for sure, definately!! and even then i would be wary. i hope u get all the answers you need and everything turns out good. on a happier note, @least u’ve got warm weather on ur side. over here on this side of the pond…it’s -47!!
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Hi everyone, just sitting here jonesing for a coffee (can’t eat or drink before this morning’s blood test) and waiting until it’s time to meet Pipocas, who will be coming with me to the surgeon’s appointment, and maybe also to see Ricardo if she has time.
I also posted something about this on the Colon Club forum last night and – so far – the response has been that post-op chemo (approx 6 rounds) is the best way of reducing the risk of recurrence. Someone has offered to email me a report written by a John Hopkins doctor that specifically deals with this subject.
Ever since I joined that forum I have not read about one person there who wasn’t put on adjuvant therapy (post-op chemo), usually 10 rounds. And it’s also been quite frightening at times to read about how frequent recurrence is, though I suppose people who have ended up “cured” are probably no longer posting there. But the fact remains that recurrence does happen and, as far as I can see, is greatly reduced by having proper treatment.
Anyhow, I am hoping that the surgeons and Ricardo can help me decide what to do. Going to see another oncologist will take time – who knows when I could even get an appointment? – and I already feel like I’ve been without treatment for too long (since the beginning of September) due to the two operations.
Ooooo … Nog just made toast! As if smelling his coffee wasn’t bad enough. Such a cruel cruel guy…
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Hard to know what to add, really. Post-op chemo seems to be standard practice, so it seems odd that they wouldn’t be advocating that. Second opinions would definitely be useful.
Hope today’s meetings help to clear your mind.
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Can’t add any more really – such a shame that the roller-coaster had to do one of those “move inside into the dark and flip you over” things, just to disorient you still further – like you need that.
Still wishing you all the best, as ever.
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The sentence that stands out for me is: I just do not have any confidence in this woman, nor in any of the doctors in my oncology group.
I hope you act on this feeling. Her track record is already poor.
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I’m so proud of you. This is a perfect example of an informed patient acting in her own best interests. Not only get those second and third opinions, if at all possible get them from doctors at another hospital. Because doctors who work together are loathe to say “Why no, Alice, your track record here sucks and I’ve gotta disagree with you.”
I would do the followup chemo no matter what, but that’s just me. It’s not as if your oncologist is an obvious genius.
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My first reaction to no more chemo would be “Yoo Hoo!” but you know why. My second reaction, probably would follow the same path you just did. Do you what you need to do to feel comfortable with your treatment and prognosis.
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Hi Az,
Let’s hope the second opinion is the same as the first! Or at least that a second doctor can give you a bit more of an explanation of *why* you seem to be the exception to the rule…
Gif
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It sounds like a second opinion is most appropriate.
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Hi Az,
Wow, I think mostly you are in a better place than you were a few months ago – that’s got to be good. More than good 🙂
As to whether to do the follow up – probably best – especially if someone has a readable proper research paper outlining the pros and cons – and that reckons so. Make as informed a decision as you can – that’s all you can do. And it’s obvious that’s what you’re doing. So all the best with the decision and may the side-effects be minimal should you decide to go with it.
Orcus
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I want you to be Ned too!
http://www.bbc.co.uk/dna/h2g2/alabaster/U200838
🙂
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Ooops, I mean-
I want you to be Ned too!
🙂
(It’s damn early here…)
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🙄
Well, just back from the hospital and have lots to report. But first … must have a glass of wine and some leftover roasted chicken and veg. It’s been pissing down all day and I’m freezing and in need of comfort food.
Back soon!
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Great news az. Fingers crossed that the second and third opinions are as optimistic.
I’m not surprised the doctor had nothing to say about her previous statement – what could she say that wouldn’t completely undermine her?
It’s incredible that there are still so many bad/ignorant doctors out there. I blame the deference they used to get in the old days – gives them inflated opinions of themselves.
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Whew. Second and Third opinions very important here, given your level of distrust of this doctor. Well, and her track record.
All that aside, it is very good news indeed and I am happy to visualize your continued good health, your life back, no metasteses, and enough chemotherapy to ensure all that with as few side effects as possible.
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Oh, my, it took a good 15 minutes for me to get the Ned Flanders reference. But I did… eventually… har-har.
Today was so INFORMATIVE! I felt like I was in a cancer seminar. Among other things, I noticed that Ricardo called in SEE instead of NED (sin evidenica de enfermedad). SEE?
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(spelling compromised to to new fancy american keyboard. not used to it yet. there are keys in all the wrong places.)
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Keeping my fingers crossed, az.
…but you can never ever be sure of being a NED… but actually you can’t spend the rest of your life worrying and asking yourself “if” or “might”
Life’s for living!
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Presumably there are keys in all the right places, but not necessarily (I’ll give you that sunshine) all the right keys!
You may need someone (British?)with a Morecambe & Wise background to explain that one!
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Hey Pip, nobody expects engineers to be fast! Actually have a look here;
http://www.bbc.co.uk/dna/h2g2/alabaster/F16034?thread=76493&latest=1
Post number 13727. I especially like-
“To the optimist, the glass is half-full.
To the pessimist, the glass is half-empty.
To the engineer, the glass is twice as big as it needs to be.”
Cheers!
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