20 % of women overwhelmed by cancer treatment options

I would really prefer knowing all of my options, and also asking my physician which option s/he thinks is best for me.  At that point, if I have reasons why I think that option isn't the best one, we can discuss my reasons and discuss another option. 

In other words, I want to make the final decision, but I'm not sure I want all the cards laid out on the table while my physician says "pick one." 

Actually, the most difficult treatment choice I've had to make so far was deciding between LX and MX and that was hard because I felt I had too little information, not too much. I can understand how women with an Oncotype score right in the middle of the gray area could be frustrated by the onc saying it's their decision, but I've come to the conclusion that in many cases doctors say that because they are as much in the dark as the patient. There is simply so much about cancer that is still unknown that the doctor may not have enough solid facts to be comfortable making a recommendation one way or the other. The answers to our questions may be as unknown to the doctor as they are to the patient. When I don't have enough facts to make a decision on that basis alone, I revert to what someone told me in my early days on bco: make the choice least likely to lead to regret, no matter what the outcome is.

@lago, I agree, there is some benefit to having the doctor suggest something, even if only that your reaction to the suggestion reveals that you really don't want to do what s/he advises. That's what happened to me with reconstruction. I didn't realize how much I disliked the idea of an implant until the first PS I consulted told me I was too thin for any kind of flap surgery.

I don't know how much that would help the 21% who feel over-burdened with responsibility already. Would someone who feels she isn't getting enough guidance be confident enough in her own view of the situation to go against the doctor's first recommendation, or even to ask for a second opinion or what the other treatment options are?

I guess the positive view of the survey is: if 21% felt they had too much responsibility and 7% felt they had too little, that means the other 72%, almost 3/4 of those surveyed, felt they had about the right amount.

I want a doctor who presents me with a game plan (which I will research and question), but for goodness sakes, he/she is the expert and the one who has gone to years and years of medical school, is in a medical practice, has had access to medical journals, conferences, research, colleagues etc. etc. He/She BETTER know more about cancer and cancer treatments than me, the new and scared to death, patient!!!! I don't want to go back to the days when 'doctors were gods', but we are paying a large amount of money (not to mention, potentially with our lives) for their knowledge and guidance!

Personally I think in many cases it's harder for the patient when the doctor makes a recommendation. And I also worry in some cases where the patient gets a treatment recommendation from a doctor, and then follows that recommendation without understanding the implications and the risks.  

coraleliz, I agree with you completely. We each have a different risk tolerance.  How we see risk might be different from how our doctor sees risk. I hang out a lot in the DCIS forum.  I've seen some women who choose to take Tamoxifen after a BMX, even through the BC risk is at most 2% and the benefit from Tamox is at most 1%. But I've also seen other women who opt out of taking Tamoxifen after a lumpectomy when they have a recurrence risk in the range of 15% - 20% and Tamox could cut that in half. Similarly, we are each scared of different things. Some are more scared of the cancer; others are more scared of the risks from some of the treatments such as rads or chemo or hormone therapy.  So someone who isn't very risk tolerant and who knows that she needs rads might choose instead to have a MX in order to avoid rads. On the other hand, someone who is more risk tolerant and who has the came fears of rads might have the lumpectomy and simply skip rads.

The really concerning problem that I've seen is when women disagree with or are uncomfortable with the treatment plan that their doctors have suggested for them, or they just don't understand the reasons for the recommendation, but they are afraid to either question the doctor (since he or she is the "expert") or scared to say that they really would prefer to do something different ("well, he's the expert so he must have a reason"). Everyone here is saying that they would ask their doctors questions, but so many of the posts we see on this broad with questions about treatment options are being asked by women who don't feel comfortable asking their doctors those same questions. 

For me, it all comes down to communications and providing patients with the facts they need so that they can make the decision that's right for them. When I read this article, that seems to be what it's saying. The doctor can't abdicate all responsibility - the doctor needs to provide patients with all the information they need to make the decision.  They should explain each of the options, discuss the patient's risks from the cancer as well as the benefits, risks and side effects of the treatments.  And the doctor needs to be open and available to the patient so that the patient is comfortable asking questions, voicing concerns and stating preferences. 

In most cases I think a good approach would be for the doctor to explain what the treatment standards are for a diagnosis such as the one that the patient has, explain why those treatments standards are in place, but then also present other options that the patient could consider, the reasons they might choose (or not choose) those other options and how that would affect their risk.

There are of course some cases where the diagnosis or pathology clearly points in one direction, and in those cases, I would agree that it's the responsibility of the doctor to explain this to the patient. And there are other cases where there is no clear answer or guideline (the middle ground Oncotype score); in those cases, since the choice is so subjective and so personal, I don't think it's right for the doctor to give a recommendation. That might make it more difficult for the patient, but it's her life and she's the one who has to live with the consequences of the treatment choices that are made.  

I guess I have two conclusions from this report.  The first is the same as what curveball said, which is that the study suggests that 72% appear to be happy with the decision making process they went through.  I think that's pretty good.  The second is that we are talking about a cancer diagnosis and cancer treatment, and nothing about that is easy, so why would we expect the decisions to be easy?  So yes, we have to make some hard decisions, choosing between one unappealing option vs. another, or one risk vs. another. That's what happens when you are diagnosed with cancer.  

On the other hand (to you ruth,) I have always felt the "what I'd tell my wife/mother/daughter" statements were highly manipulative; and who knows what sensibilities the docs family members have?

Personally, I like the approach where the doctor shares his thought process with me allowing me to understand how he has arrived at certain conclusions.  They almost never do this, so I end up giving them something of an interrogetion on why they are recommending "this" over "that."  I do a lot of "homework" for the very purpose that I can have and comprehend these talks with the doc.  I think this is known as the "team player" approach, and I feel this gives the patient the most amount of respect.  I think it is the doctor's responibility to talk and listen to the patient and determine if the patient is comfortable with this approach, or if the patient is looking for a more "paternalistic" approach.  Is it really that difficult for a doctor to tailor their responses to best suit OUR needs?  Who's paying whom?

Considering what we all have said so far, I have found that virtually all doctors want you to have treatment that is the "standard of care" at the moment.  This will be their recommendation.  Unless you are in a clinical trial, or at one of the preeminent cancers centers, the doc is unlikely to stray from the tried and true because if he did there would be insufficient coverage for his a$$.

Sorry if my post is a little rambling.  I guess what I am saying, bottom line, is that if 20% feel that way, then the doctors are falling short in providing the service we are paying them to perform.

I was given a number of treatment options; each was explained thoroughly- and in detail - advantages and disadvantages - and, then, everyone sat back and looked at me expectantly.  Say, what?  Aren't you guys the experts?  I had to really dig to get at my oncologist's thought process.