The Doctor Who Will Not Take You as a Patient Will See You In June

There's both a lot and really only a little to update - the good news is that something will happen in June. Thanks to sharing what was happening with Allyson Kapin from Women Who Tech who'd told me her sister's experience at Georgetown it gave me an opportunity to think through where I am.

So here it is

Suddenly Georgetown at least seems interested in providing what looks on paper at least like a good intitial screening. WHY and how did they suddenly decide they want to do this? I don't know.

Considering that both Oncologists that I wanted to see have declined to take this case it's amazing that the latest I've contacted now has faxed an Rx for CT scans of multiple areas - which I've looked at and the order seem to be very comprehensive.

Dr Liu want test results before I meet with her sometime in June. As she told me before - this meeting is just to give her recommendations and to pass me on to the newest oncologist because Liu has a full practice. I'm glad to do the testing and get at least ONE opinion on my options - especially to take a step forward and to get some answers that the testing may give us.

My plan: to flat out ask about concerns

First: I need someone who is eager to take on and solve complex problems. This is not a simple case as I see it.

Second: Is cancer spread to bone or elsewhere responsible for symptoms I've been having that I was blaming on other things? Which symptoms are caused by other chronic illness and which are caused by cancer? Is creative treatment based on unique needs something Georgetown does well or is it a case of: "we give you standard treatment for breast cancer after mastectomy."

Third: The proposed doctor they were referring me to was one whose interest was in cancer prevention. She is not a specialist in any of my challenges. That just seems so naive that it alone almost makes me hesitant to commit to Georgetown as a treatment facility.

Fourth: Will care be comprehensive; decisions made by an oncologist, orthopedist, neurologist, cardiologist, psychologist etc or would that be only a special case or if a special need arose?

Since managed care insurance makes it difficult to get hospitals to involve multiple specialists unless that is their standard of care, how will this affect me? I accept that I'm not dealing with M.D. Anderson Cancer Center but how close to that standard can they come?  Since I had a TIA last August and other chronic illness I need to know that my cancer care is not going to make other problems worse.

Fifth: What's their approach to pain management? Does this mean yet another Doctor to try to get in to see? How would they immediately improve my pain situation?

Sixth: Will they go to bat for the care they want with my insurance company or simply fold to guidelines?

Do or die

If I don't get good answers I'll supposedly keep meeting with docs until I either do or die. The only problem with this is that the clock is ticking and I'm not having the anti-hormone treatment that looks on paper to give me the best shot at beating any recurrence that hasn't already begun.

Will that be Georgetown's recommended treatment? Will Liu agree with the prognosis which will change obviously for the worse if the bone scans do turn out to indicate even more cancer? All more questions.

At least right now some things are clear

1. I'll do multiple CT scans and xrays at Sibley Hospital in DC Thurs May 29,
2. I'll meet Liu at Georgetown around June 12th to go over tests and be passed off to someone else if they can convince me to do so
3. I'll try to see if I can see Wells at Hopkins with the results of the CT scans and other bone results I'll have after I meet with Liu.
4. On the 18th at George Washington U Hospital I'll have my second breast surgery with Doctor Chang - this time cleaning out the expansion capsule and adding a breast form on one side in the pocket created in my chest wall and then have the other breast matched to the new and improved model. And yes, again I go home with drains in place.
   
5. And talk about something to get ballistic about, this is only allowed as a 23 hour hospitalization by my insurance company just like my mastectomy was. No, I'm not ballistic, just really makes me sad that there would be a standard of care so low.
   

Goals

At the end of surgery I'd like to recuperate knowing for the most part what I'm facing as far as other therapy. I'm not sure that's possible, but I can hope.

Sitting around on a rock on the coast of Nova Scotia for the Month of August would be nice too. I just don't see that happening either.

Comments

[Eden Spodek]

Susan, Why don't you make an appointment with another cancer center as well? I realize it's expensive in the U.S. but in these situations, you've got to do whatever you can to give you the best care and peace of mind.

When I had my exchange surgery, I was in and out the same day. Granted yours sounds a bit more complex but you may be okay to go home after 23 hours. Personally, I preferred home to the hospital especially since my little guy's birthday was the next day.

I'm heading to Nova Scotia for a few days in July. I'll make sure to sit on some ocean-side rocks for you. It's the least I can do. ;)

[GeekMommy]

Susan - I'm glad Dr. Liu is at least seeing you - let's hope that her response is "make room for Susan in the practice".

That said, I do have to second the 'look elsewhere too' post above.
Have you looked into Cancer Treatment Centers of America? http://www.cancercenter.com/

(((hug)))