A Very Difficult Patient: Better Prognosis?

[Starr13]

So, a few weeks ago, my radiation oncologist told me that I am a very difficult, frustrating patient.

I told her, well, hmmm, sorry, I've never been a cancer patient before, I suppose I'm not very good at it. Actually, I've never been a "patient" of consequence of any kind before: the last time I needed a doctor for anything was for a sinus infection like 10 years ago, and, 10 days of antibiotics fixed the problem. And since extensive sclc isn't a 10 day, $25 fix, please pardon the confusion while I get adjusted to this...

Actually, I'm not a terrible patient - but I absolutely DO ask a lot of questions, verify all information, refuse medications that I do not believe are appropriate, and I also inquire about items of research etc. I am always very respectful and courteous and I bracket everything in "please" and "thank you", but, I am very aggressive and demanding in terms of my health care. I will also ask the same question ten times and ten different ways to make sure the answer comes out the same. And, I happily pay the $22 to download complete articles from the Journal of Clinical Oncology or other periodicals (the abstract never tells the complete story) and bring them to my appointments and ask questions. And I have no problem breaking or bending rules, if common sense and circumstances warrant it.

As an aside, the appointment with my radiation oncologist ended with her hugging me, so, we did part on good terms in spite of the trouble I tend to cause for her. And I do have good relationships with my doctors, but, I take a sort of "trust but verify" position that probably drives them a little nuts.

So anyway, following the "difficult patient" indictment, I spoke with a psychiatrist who specializes in cancer patients and shared this experience with her, and she cheered. She said patients who are "difficult" have the very best prognosis and tend to live a lot longer. She said PLEASE continue being who I am, it's a VERY good sign.

Then, I found some studies on pubmed.gov that measure "free child" vs. "adaptive child" specific to sclc, and, it turns out that studies support the concept that the difficult patient does indeed have a far better prognosis and typically such persons live far longer than the more compliant, agreeable patients.

I am curious to know if anyone else has noticed this more "difficult" patient behavior on the part of long term survivors? Are long term survivors more iconoclastic? Or is this isolated speculation on my part?

[Kasey]

Starr........you are preaching to the choir as far as I am concerned. My story is WAY to lengthy to relate here, but I do believe I have DIFFICULT PATIENT stamped across the top of EVERY report in my file.

Like you, it was always 'please' and thank you' each time I presented my thoughts. It was well over a month and none of the docs were even telling me exactly what type of lc I had. So I asked the rad onc to see my file. His eyes flew up, but I read the words that no one would say. Later upon reading his assessment of me he said I presented myself in an anxious state. Well, HELLO!!!!!!!!!! I have a rare form of lc!!!! And no one was telling me!!!!

I visited an expert on MY type of lc at a CCC. He wanted me to get LOADS more rad. In a most respectful manner I mentioned that I believed that that much rad would make me ineligible for surgery. His reply was something like this.....well, mmmmmm, on occasion I have been able to do surgery. Well that wasn't good enough for me.

I'll just finish with this one. When I did not hop on the local surgeon's bandwagon with all his recommendations, he actually hung up the phone on me.

So Starr, I went on to find the help I needed and it wasn't with any of these howdy doodies I just told you about. YES, I am a difficult patient. And YES ~ I am still here!!!!! I am not an oppositional type........more reluctant actually. But for this, I guess you could say, I really came out of my shell.

I say GOOD FOR YOU!!!! And definitely keep it up.

Best of luck.

Kasey

[Muriel]

Keep it up! I'm difficult and time-consuming and alive.

Muriel

[recce101]

Hi, Starr:

I absolutely agree, and I would never stick with a doctor who didn't accept me as a major partner in my own medical care. The best of them probably enjoy the exchange with challenging (better word than difficult?) patients and try to anticipate what questions and articles will be brought to the next appointment. I think it also helps to be a little bit detached and try to team up with the doctor to address the problem, rather than expecting the doctor to contend not only with the medical issue but with my personality quirks at the same time.

By the way, your use of "iconoclastic" compelled me to look up the word. Previously I'd relied on the context for meaning whenever it came up, but this time the "icon" part intrigued me. So if we're image breakers, what image are we breaking -- the image of passive patients who say "yes, doctor, whatever you say, doctor"?

Best wishes and Aloha,

Ned

[lc46]

My Mom and I are definitely difficult patients. I go in there telling them what I have researched-I think they want to know where I got my Medical Degree...ha ha!!

I'll say well so and so on this site is doing great and taking this and that..... I'm sure they hate it!!! They are the ones who paid 200K to go to med school not me!!!

Our Radiologist (whom we love) Flat out said we were a pain in the A--!! That's right!!! This is my Mom's life we are talking about-We Will do everything possible to keep her alive.

Dar

[Starr13]

Oh, good, then I don't feel so all alone. I haven't noticed it or experienced it at all on this site, but I have on two other sites (and subsequently I don't visit those sites any more) where there is a dominating attitude that the "good" patient is valued and admired, and, specific to extensive sclc, we are supposed to cooperate, and die on schedule, and, we are supposed to help our medical teams and caregivers have an easier time of it by dying when the stats say we're supposed to.

On those other sites, I have actually read a post from a caregiver that said "my spouse is such a GOOD patient!"; from a nurse that said "dying patients make it very difficult for their caregivers when they do not know when to let go when their time is up; hanging on and fighting makes it hard on the rest of us"; from a patient with sclc limited that said "I've already made the decision that if my cancer should spread and I am extensive, I will not fight it"; and so on.

I find such attitudes completely appalling and horrible, and therefore am not surprised at the low survival rate.

Fortunately, my oncologist couldn't offer an attitude that is VERY far removed from this sort of thing - he is very, very positive, but without being silly, or making false promises.

The long term survivors I have spoken to have all been very difficult patients, based on their descriptions of their various experiences. They are very naturally in the category of "free child" vs. "adaptive child"; surely that is why they are survivors (in addition to excellent medical care and other factors).

They're not rude or disrespectful in any way, but, they are very firm, proactive, outspoken, etc., and at least one of them that I know well won't hesitate to break rules, and go completely against doctors orders, if the decision is logical and based on something he believes in very strongly (and so far he's been right every time).

[Nova]

Have they done a study about "problem caregivers"?

I too, always have extremely good manners when I'm asking Harry's doctor questions, but sometimes I think he wishes I would be quiet and let him hurry thru with the visit.

Harry is the type of person that says he's "Fine", no matter what he really feels like, and he would never think to ask a question. He has never researched SC cancer, he doesn't remember any of the names of the Chemo meds he's received, he doesn't remember when he was diagnosed, etc. (That's okay... it's his way of handling things).

But on the other hand, "I" want to know about every possible means of a cure there is, so I ask loads of questions, and ask them to check things twice, etc.

It's YOUR life. It's VERY important, so phooey on them. Keep being stubborn. Shoot, go down in history as the biggest "Problem Patient" they've ever had!! I'd count it as an honor!

Continued good luck to you.

Nova