Speaking Frankly to your Dad's Oncologist

[Mike 03]

Thankfully, my parents finally accepted my offer and will allow me to participate in the next meeting with my father's oncologist regarding his relapse.

I'm very nervous about this. The doctor is very highly respected and well known in his field and his work involves relatively intricate chromosomal issues and how they relate to prognosis, and this is the area I want to question him about, as it pertains to clinical trials. This is a critical issue for my father because he has very bad genetics so far it as it comes to battling his kind of cancer.

The questions I want to ask him are fairly technical in nature, and I am guessing he is used to getting these sorts of questions from his patients.

Is it a good idea to ask him these questions? I don't want to put him under any sort of pressure that might embarrass him or put him on the spot, but by the same token I feel these are legitimate and important questions in terms of my father's future course of therapy for his particular cancer.

I think my question is, "How assertive can/should I be" when it comes to serving as my father's health advocate under these circumstances?

This is just such new terrain for me. Any advice or guidance would be very much appreciated.

[JVS]

1. If it's a technical question, you might want to email it to him so that he can put together the...

answer.

[Mike 03]

5. That's a really good idea. Maybe this is the answer.

I'll meet him and just get a sense of the situation and save the technical questions for later.

[patrice]

2. My family found the priorities of clinical trials to be different from therapeutic treatment.

They are working against time and there are things they want to know.

[Mike 03]

6. I'm not sure what your situation is/was, but you are right. Clinical Trials are complicated

and it's important to stay alert and figure out what is going on.

I hope your situation is a good one. You sound like you have been through some situations.

Be well.

[patrice]

7. The Nurses made up for the differences.

The doctors did well; my sister's white cell count back up when she died, so it wasn't the cancer that killed her. The damage from 3 years of beating the cancer down is what killed her. So the relevant question is: which would kill her first, the untreatable multiple myeloma? or the clinical trial treatment?

My family thinks, without the clinical trial, the cancer would have got her earlier and her going may have been harder. As it was, even though the treatments WERE difficult, overall she had a very good quality of life up until the last month of it, when she just crashed. There's also the point that she contributed to the research. She CHOSE to do that, so that was a Good thing.

The other experiences were my husband and another sister both with lung cancer, about 10 years apart. There's probably not much comparison and I don't want to talk about that except to say the doctors gave up quickly and their ends were peaceful (one with morphine, the other without) and relatively quick.

P.S. My sister was 51 when she died. She was extremely pro-active and involved throughout her entire treatment. In regards to the other two experiences, we were completely over our heads and hardly able to ask any questions at all. I do remember asking about whether vitamin therapy was advisable for my husband. The oncologist said he could think of no reason not to, so I embarked on a routine involving several kinds of vitamins and wheatgrass and other things. Later I read that combining chemo and vitamin therapies is not very recommended as it is thought that they may cancel each other out. So asking questions is a good thing, but don't be toooooo accepting of answers.

[tabatha]

16. For the multiple myeloma

was Thalidomide involved?

[GCP]

3. Be calm. phrase your questions in a polite, professional way

And try not to make him/her defensive. They can get like that if they think you're questioning their professional judgment. If necessary write everything down you want to ask and write down the answers. If the guy's so good, he shouldn't mind this.

[Mike 03]

4. He's someone whose work I respect enormously, and I would NEVER be rude.

I'm just nervous as hell.

Thank you for the advice. I already I my questions worded fairly well, I think.

[BlooInBloo]

8. Ask away.

[NashVegas]

9. Never Be Afraid To Ask Questions

You're a good kid.

[mnhtnbb]

10. The best thing to do is write your questions down. Don't be afraid

to stop him if you don't understand his answers and ask him to explain something again.
Be sure to get him to connect treatment plans and how your father is likely to respond physically
to the treatment and how it affects the chances for recovery or extended life.

Good luck.

[ColbertWatcher]

11. "How assertive can/should I be"

As the advocate, be respectful, but persistent.

Maybe start the session out by explaining why you're there and apologizing in advance for seeming like you'll be stepping on toes.

Remember: you're the health advocate; you do not mean to question the doctor's credibility, but no one else is going to look out for your father like his son will.

And google is always your friend; seek out support groups, who can help you with intelligent questions.

[stubtoe]

12. From personal experience, be a respectful, informed, assertive warrior for your Dad's health

care treatment plans. He needs just such an advocate, which is why you made the decision to step in, for which I congratulate you.

Hang in there Mike.

[Tangerine LaBamba]

13. Something to keep in mind

Far too many patients forget a basic fact - that the physician is your employee. He is working for you. He gets paid because of you (in this case, your father).

So shake those querulous sensations, make a list of questions, do it all in a straightforward, business-like manner, and get your answers. If you don't understand something, don't be afraid to say so. Physicians are there to answer your questions. It's part of their job.

Good luck.

[riderinthestorm]

14. Have your parents found the doc to be defensive?

You sound as though they have already experienced defensiveness and hostility.... Sorry if I'm mis-reading your post.

My husband's involvement in clinical trials (now in remission for Stage IV lymphoma and loving every day) at the U of Chicago showed us that the doctors LOVED to have the most technical questions since it showed we were (are) pro-active, involved and actively invested in treatment. We brought our list of questions to his "team" and you could see them rev up in anticipation of answering. This is "their thing". This is what they love to do. The clinical trial means they are considered so competent in their field that big pharma trusts them to know their shit. And they do. Treat them with respect but pull out every question you have. In our experience you will instantly win their respect. Our doctor was/is one of the best in his field for lymphoma treatment which meant we gave him no mercy on our questions. And I think he loved (loves?) us for it.

When my husband would sit in the chemo chair, and we were waiting for the doc to come by to check on him, we noticed that the entire "team" - interns and all - came to his check up. Nobody else in the entire chemo treatment room (a wide open space at U of C) ever got nearly the same level of interest and involvement.

We loved it and I suspect they loved it judging by the way everyone acted. It was fantastic. When my husband went back for his 1 year check up, the doc knew us - really knew us based upon personal conversations we'd had that wouldn't have been included in his file. And I know that's because we were so damn inquisitive.

As is typical in most situations, start out with a compliment. I know it's hard with the relapse not to feel angry but you already know your dad has a tough genetic lottery number. If you are open and truly only interested in seeking answers - and not nailing his ass to the wall - then, imho, fire away.

Good luck. We came away from our sessions with the doc(s) empowered. Although the news was never great, at least we always came away better informed. That's never a bad thing when making tough decisions.

Peace and hugs all around during your difficult times. :hug:

[TZ]

15. Most good doctors will be more than happy to answer those

kind of questions for you...Both my hematologists local and my Mayo doc are really really good about answering technical questions for me...Alot of them really enjoy sharing scientific knowledge, it also makes it easier in the long run if the patient or patients advocate understand exactly whats going on...