What's the Difference Between God and A Doctor?

The punch line to that joke is "God does not think he's a doctor." I heard it last week and it's pretty apropos here.

Wednesday June 4th was my appointment at Georgetown with second of the Lombardi docs who I had asked to take my case. I guess I went into it hoping for more than I should.

Setting the stage for this visit my mind was a mass of questions and my family doctor felt that the case was complex enough that a comprehensive cancer clinic was the place to go for answers. She suggested Georgetown’s Lombardi Cancer Center and now after two months of trying to get seen there I was just a few hours away from my appointment as I started writing about the impending visit.

It was 3:30 AM Wednesday morning and I was awake in spite of taking an ambien at 11:30 and a valium at 1AM.

My mind was swirling with the questions of a curious sick person.

• What do my symptoms have to do with pain in my breast then other areas that I thought were fibromyalgia?  Were many of them cancer symptoms all the while? My reading via well respected cancer websites seems to indicate they might be. Neither my surgeon nor my GP thought that these ideas were out of the question.

There were funky areas in a bone scan;

• did the intense sternum and spine/hip pain I had dismissed as something else mean the cancer has spread to bone or is something else is wrong? How would this impact completing reconstruction on the removed breast and reduction on the other at George Washington University Hospital this coming Wednesday?  Has cancer spread somewhere else? Is it responsible for new symptoms and old symptoms or just new ones - or none.

• How might my heart problems and a small stroke diagnosed in late summer 2007 tie into the picture and how they might affect my treatment options? I‘d read about the concerns with some therapies so which applied to me?

• Did any of my issues have anything to do with the unknown lymph system problems that landed me in the hospital in isolation at age 12 and persisted for over a decade? Does being allergic to everything play a part?

I was uneasy but hopeful about how this doctor would suggest I proceed. I wondered if Georgetown has a comprehensive team that deals with complex medical histories. In order to make sure I understood what the recommendations would be and what a program of treatment would entail I enlisted my husband Bill and daughter Kate to accompany me. Both were super in assisting me to clarify questions and providing moral support.

I did in one way get answers

And indeed I was seen. The bad news is that none of these questions were really addressed in a way I felt was helpful. Some I never brought up when it was clear that this was not a match made in heaven.

Within minutes after Doctor Liu entered the examining room with an assortment of four residents, fellows and nurses in tow I had been dismissed in more ways than one.

She stayed a few minutes, conveyed what shed decided to convey then exited without wishing me well and without shaking hands as she left. While I hope the Residents don't learn that this was the way one treats patients, there’s a lot I learned from the visit:

A.) Doctor Liu stated that cancer has nothing to do with other physical problems. She made it very clear in her answers and in her tone that she treats cancer as an entity without a comprehensive approach. How the whole person reacts to the disease or their current physical health is not really her concern.

B.) She believes that breast cancer, when removed, is “in some petri dish somewhere” thus unable to cause any symptoms, in spite of mountains of evidence to the contrary that has turned up from everyplace from NIH to UCLA to MD Anderson.

C.) From her examination of tests she says there is “No evidence that the cancer has spread” to the bone but these areas should be closely followed. When asked how she knew this she said “I’ve seen the x-rays” Period. She gave no explanation for why I was having such serious rib pain or what questionable areas on the bone scan were other than possible degenerative changes. This is not cancer related - end of story and without asking any questions of me about symptoms, why I felt they were related, etc.

D.) Although she does not like charts and statistics she strongly implied that I was foolish for going ahead with surgery to finally finish my breast reconstruction this week, rattling off options for various forms of chemotherapy but using initials to discuss regimens and neither slowing down to seriously discuss the merits of each nor giving a hand-out of the options nor discernible justification for her rationale that chemotherapy was the wise choice other than an implied “because I say so” (not her words - but her attitude)

E.) Her dismissal of the relationship of trust between my surgeon Doctor Chang and me, and my desire that he complete my surgery before he left GW in July was disrespectful to both him and to me.

F.) She disagreed with Doctor Kaltman’s use of statistics and percentage of risk as well as her view that Aromatase inhibitors rather than Tamoxifen would be the right choice for hormone therapy, and expressed this in a fairly dismissive tone.

G.) “We know everything about Tamoxifen there is to know”  pretty much sums up her end of much of the conversation.

H.) When asked at the very end what she thought my next step should be given that I was unwilling to cancel surgery in less than a week she mentioned Doctor Kaltman. It’s clear she prefers I have my cancer treated pretty much anyplace other than at Georgetown but she covered her bases and saw me with plenty of witnesses present. End of story.

I.) Her view is that if have pain since it has nothing to do with cancer (back to items A. and B.) a rheumatologist needs to address that. But she is too busy to coordinate any cancer treatment with the treatment of any other doctor. She told me bluntly that it is my job to find specialists in multiple other areas and coordinate care among them.

So I’m left with the questions I walked in the door with . . . and others.

If a teaching hospital is not where one goes for helping get to the bottom of  my questions who could possibly tackle the combination of cancer, osteo-arthritic and immune system and other glitches? 

It is possible that there are answers to any of this in any cancer center? Maybe not. Doctor Liu reinforced my growing fear that there simply ARE no answers and the problems are too daunting to attempt to find solutions for.  But I keep believing in the possibility.

There’s good news too though.

I left without one question occupying any place in my mind. There is no doubt that Georgetown could never help me find the answers I seek - even the most basic ones. 

My favorite analogy again surfaces as it does regularly in my life: Many times we find ourselves in front of what looks like a bowl of spaghetti. Each single strand not easily identifiable as individual challenges and not easy to separate from one another, much less find one end or another.

Six months post diagnosis I know it’s only the beginning of many years with no guarantees and no easy answers.

But this really is good news in a way. I know Georgetown is not for me and i know what kind of doctor - and what kind of approach - is not workable in this situation and for this patient. For every door that closes another opens.

In the meantime

What I need to do now is get through the week.

• Monday more testing at George Washington in preparation for surgery.
• Tuesday rest and tie up loose ends.
• Wednesday removal of the tissue expander in my chest wall and insertion of a  breast form in the pocket created by the tissue expander plus reduction of the other breast to more or less match the reconstruction.
• Thursday discharge from hospital if all goes well; returning home to put mounds of bags of frozen peas on my chest.
• Friday lots of sleep, measuring drainage tube output, and more peas.
• The following seven to ten days of much the same.

Doing my best to keep positive even though answers are few and far between, I’ll tackle the next steps when this incline has leveled off to a nice plateau. if we lose power or I'm disconnected from the net during my recovery period I may threaten to jump out the window. Instead I'll probably check into a hotel.

--

And that's the end of that.

However before Georgetown complains about my characterization of this event: I was very impressed with the rest of the staff of the Lombardi center, from the intake to the last interaction before leaving the facility: the lab technician, who I found both charming and skilled.

I was treated well at every point of the process except for the meeting with Doctor Liu with which I was very disappointed.

This is my opinion only and represents how I experienced this meeting. How Doctor Liu or anyone else experienced it or interprets it I'm unable to say and has no bearings on my case.

No harm and if we all behave like adults all ahould go well for Me, Doctor Liu and Georgetown (taught my my favorites, the Jesuits - - well, unless one counts the Paulists (HI Father Frank!))

Comments

[drt]

Did I ever send you a link to the article on AARP site? I know you trust your doctor who think they are God, but what if those doctors mentioned in AARP site have other options that may help you? Just a thought before going to bed. Good luck for your coming week.

[suzymiller]

You have real guts not just letting people fob you off because they wear a white coat and for continuing to ask questions. Medical science seems to forget sometimes that asking questions is what science is all about.

In the UK our medics are trained by pharmaceutical companies (they kinda wrote the manuals as I understand it) and know nothing about health. For example, a weak and compromised immune system (as expressed by allergies, cancer and other auto immune disorders) are treated by drugs which in themselves further compromise the immune system.

Drugs carefully used, like surgery, can be a valuable tool, but if your body doesn't get the right nutritional weapons to heal itself, you don't need to be a doctor to know you are going to have trouble recovering.

I have just had intolerance testing the results of which are now themselves being tested by me excluding certain foods for 3 weeks, then reintroducing and seeing what happens. By not burdening my body with food it doesn't like my immune system is less compromised. Simple - yet only available through private practitioners.

Diet and reducing stress are probably the most beneficial medicines around which support conventional treatments, yet most doctors haven't a clue about the direct impact of what they eat on their own immune systems. Crazy, isn't it?

Thank you for sharing your experiences and being such a fantastic mentor to others who might otherwise allow themselves to be bullied by the guys in the white coats.

[GeekMommy]

There's a reason we must shop around for doctors more carefully than we do for auto mechanics or any other professional... Because you can't just go out and get a new body to replace this one if you let someone work on it who isn't going to approach it with the level of care and competence you need to fix it.

((hug))

She might be the greatest oncologist since sliced bread - but you aren't a loaf of bread.
Hang in there - keep looking!! :)

(((hug)))

[Connie Reece]

One of the best posts I've read about the necessity of finding the right doctor, and kudos to you for calling out Dr. Liu as an example of how NOT to treat patients. Unfortunately, there are a bunch of Dr. Lius out there. However, there are also a lot of Dr. Changs, who care about their patients as individuals and are genuinely interested in helping them find the answers THEY (not some amorphous universe of cancer patients) need.

Now, let's get busy finding that oncologist who IS the right match for you. He or she is out there waiting for your file to cross their desk.

[Marie1960]

After reading your article I can't help but to wonder about you! I have been a patient of Dr. Liu's and quite frankly I do't believe that she acted in the manner that you claim. If anything I would say that she is one of my most caring and skilled doctor's. Could it possible be that you wanted someone to hold your hand and console you? You don't want the honest truth? I would rather for a doctor to be honest and not take my case if he or she feels as though they cannot treat my cancer. Or maybe she just did not have the availability. You are intitled to your opinion but I believe that because you could not get your way, you want to label her as a bad doctor. When maybe you are a terrible and over demanding patient.

[Susan Reynolds]

As I said in my addendum,
"This is my opinion only and represents how I experienced this meeting. How Doctor Liu or anyone else experienced it or interprets it I'm unable to say and has no bearings on my case."

Marie, it's not that I could not "get my way." I had no "way" to get. I wanted to know what the connections were between these weird symptoms and I got nothing but a standard line as if she'd been pushed to go through the formality of seeing me. So that she did.

And we won't be seeing each other again no matter how great a doc she is for hundreds of other people including the friend who referred me. This case is simply not right for her and she and I both know it.

[bob marley]

It's all the same really... as long as you don't decide that the doctor should give you the biggest breasts in the world.. then you just look like a freak.. but as long as it's reasonable for your frame there is really no difference