Please vote.

Dear Cancer Bitch readers,
I will relate a scenario to you and I'd like you to vote on my response.

Today I went to a town hall sponsored by Fancy Hospital. My oncologists (past and present) were there, as well as my surgeon, and they all spoke and the audience asked questions.
I went to the mic and asked two:
1. For chemo, I took Adriamycin and Taxol, but not Cytoxan, which usually goes with them, because of the fear of blood clots. Is there any research on the effect of using just Adriamycin and Taxol?
2. What is the research about drinking milk with Bovine Growth Hormones?

I'm going to 2. first. The only person with a clear answer was the nutritionist on the panel, and she said she recommends that you avoid milk with BGH. My surgeon said that organic milk is expensive.

Now for 1. My erstwhile oncologist said that he doesn't know why someone wouldn't prescribe Cytoxan, but he thought that a chemo regime without it would probably be effective. (I wanted to ask, Then why do you include Cytoxan, if you can do without it?) So here's the question. I really wanted to say, You prescribed the chemo regime without Cytoxan. (Because it's true.) But I didn't say that.
Should I have? Please vote in the Comments area. I have a blood disease that gives me, in essence, "thick blood," which makes me more likely than the average person to get a blood clot.

15 comments:

Erie said...

Might you have asked whether a condition would thicker blood lead to a different conclusion? Or, might you have asked him privately? If your goal was to get the information, I'd I've resorted to one of those options. If you were feeling violated or mistreated in some way and your goal was to call him/her on the carpet and perhaps shame them, then -by all means - ask. My answer to what "should" one do depends on one's goal - in my rulebook.

Erie said...

oops...condition *with thicker blood

Jonah said...

Here's the key question: What was the goal of the town hall meeting?

If the point was a Q and A about medicine in general and not about these doctors' credentials, or about this hospital's credentials and expertise, then no, there was no point in pointing out that it was him who prescribed it.

I've been to Q and A sessions with medical people- at my last one, which had my doctor in it, they let me answer a lot of the questions (lots of fun for me). In general, these are meant to be a less formal space in which patients can ask questions that aren't all that specific and others can hear the answers and doctors can answer without having to think about specific patients, or having to do anything else at the time.

You could still have asked, Why do you use Cytoxan? (my guess is that they use multiple drugs with very similar purposes so that they get only a third the side effects of each).

On the other hand, if this was more what I think about when I think town hall meeting- which is to say, a meeting more about the official rules, procedures, and plans of an instititution- then you would be well within the structure of the meeting if you:
1. Asked for the reasons behind a policy such as giving a specific cocktail of drugs.
2. Made a complaint about treatment given to you.

Just my thoughts.

Susan M said...

In an ideal world, I would say, yes, you should have asked. The idea being that (1) patients are driven crazy by these gaps and illogical-isms in their medical care, (2) patients are intelligent enough to recognize these inconsistencies and confusions, and (3) patients' bodies are on the line in the midst of this confusion. I know there's a 4 and 5. Okay, 4 would be that politeness/respect-for-authority thing that may not restrain you, CB, but I know does still somewhat restrain me from asking such questions, based on the suspicion that the doctor really does not have an answer and would be bumbling around and perhaps forced to come up with something that did not hold water, and there would be something humiliating and scary about it.

Probably your other commenters are correct that it depends on the purpose of the meeting. But still, there is a good reason to call out an inconsistency, to be assured that the doctor has really, truly thought this through with the patient's best interests in mind. That is, if you can overcome #4, the situation in which we're taking care of the other person better than we are ourselves. I suppose there are a whole range of ways to ask the question, too--from "what the hell were you thinking, asshole?" to "would thicker blood lead to a different conclusion?"

Cancer Bitch said...

Maybe i wasn't clear. I wanted to know whether there were any recent studies that looked at the effectiveness of using Adriamycin with Taxol but NOT Cytoxin. At the time of my chemo, there hadn't been any studies. The question about why they use Cytoxan at all was more rhetorical--if not using it is OK, then why use it with other patients?
C. Bitch

Lovemonger said...

I vote no. I don't think you should have said, "Um, YOU prescribed the chemo regime without Cytoxan." But I do think you should have asked a follow-up question about whether or not 'thick blood' might enter into the equation at all (because it's really frustrating that you were prescribed a particular regime and then later told my the SAME doctor that he doesn't know why someone would prescribe it that way). I might have even said, "Well, my understanding from what my doctor was telling me at the time was that it was because of risk of blood clots that I wasn't prescribed the Cytoxan."

Just curious - he did remember you, right? He just didn't remember making the specific decision to not prescribe Cytoxan in your case?

Cancer Bitch said...

I don't think he recognized me. There were hundreds of people at the meeting and I was at the microphone about 20? feet away from him.

Jonah said...

http://www.ncbi.nlm.nih.gov/pubmed/19745590?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

At the least, the above study shows that Taxol and Adriamycin are used together without Cytoxan on a fairly regular basis somewhere.

Cancer Bitch said...

Thanks, Jonah. But that's for metastatic cancer.

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Sam said...

There is that question of motive, isn't there.

On one hand, in your position I would have loved to ask, "Then why did you do it, you jerk?" But that question could only be asked by the part of me that knows that I'm in the right, that I have been wronged, and that the 'other' is the person responsible.

After all, I'm the patient, I had to go through the whole process, I know how worried I am, and I've done a lot of research on the question. That has to out-weigh your degree in medicine, your internship, and your residency in this particular speciality.

The other side is, of course, that he may have missed something, and it may be beneficial both to you and to his future patients, to have it brought to his attention. If that's the reason for asking, I believe the better course of action would be to ask privately.

A private conversation may also give both of you a chance to reach a better understanding of all the factors that were taken into consideration and led to your specific treatment plan - which is probably a much more complicated discussion, and something that a general answer in a public forum wouldn't have time to explain.

Then there is the kind of doctor who personifies teh old joke, "Those who think they know everything are particularly annoying to those of us who do." If that's how the doctor feels a question in eather forum won't be oberly satisfying.

Anonymous said...

Hey CB
I was there too... didn't ask a question, tho. I am premenapausal, presented with mets, so no chemo.... yet. (Yet, my dumbass FORMER oncologist had me get a port...no problem jamming the Tamoxifin down it, thanks doc.)
Your doc did say in his ground rules he wouldn't discuss specific treatment, so probably would not have responded.
Here's one for you... some studies have shown Ashkenazi Jewish women are more suceptible to breast cancer. My mom was Jewish and had breast cancer. I tested negative for BCRA 1/2. My surname is very Irish and I favor that side. Have never been asked re my ethnic background and find many, many people don't know what Askenazi is... Did any of your docs ever mention being Jewish as a BC risk factor? (I started to include it "Askenazi Jewish descent" in my medical summary... doing so prompted my doc to order the BRCA test.) Just wondering....

Cancer Bitch said...
This comment has been removed by the author.
Cancer Bitch said...

I know that Ashkenazi women are more likely to have the BRCA gene mutations that almost always lead to breast and ovarian cancer. Some people will tell you that Ashkenazim are East European Jews. That's partly right. Ashkenazim are Jews from Europe west of Bulgaria and Greece. Most Sephardi Jews came from Spain and Portugal but were kicked out and killed in the Inquisition. Jews who are from anywhere and who have Yiddish backgrounds are Ashkenazim.
C. Bitch

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