What if my new doctor hates me?

seatown

I posted the following on my Caring Bridge blog a few days ago, so a few of you may have seen this already. But I was just wondering if anyone else ever dealt with a situation where you felt your doctor somehow got alienated. Does it matter?

Feeling very low…wishing I could find the spirit in others that enables them to tell their doctors what’s what. I have just come thru a harrowing week which I fear jeopardizes my treatment. I realize I’m being overdramatic, but I can’t help myself.

To try to summarize briefly: My original oncologist, a wonderful guy known for being very caring, has told me all along he’s been consulting with a gynecologic oncology surgeon in the same practice but in a different location. In fact this surgeon operated on me nearly two years ago, so I’m familiar with him. Recently my original oncologist said that since the gyn-onc surgeon is more of a specialist in ovarian cancer, he was suggesting I get treated for my 2nd recurrence (6 new tumors found in Oct.) from the gyn-onc guy instead. This was fine with me.

 

So I’m starting a new chemo drug which I’m supposed to get from the gyn-onc doc at his location. That’s where the trouble arose. Nobody told me there’s no lab at the gyn-onc doc’s location. This means I’m to make an 80-mi round trip to his office for blood draws the day BEFORE chemo, followed by another 80-mi round trip the day of chemo. I found this out by accident. It may not seem like a big deal—but to me, it is. The last time I drove to my original oncologist, I could hardly hold on to the steering wheel because my hands & wrists hurt so badly from rheumatoid arthritis. Plus, all my ailments & my advanced age mean I’m perpetually fatigued.  For me, a day of rest follows every trip into Tucson. 

 

I proposed, in an e-mail message via the patient web portal that purports to serve all the many locations of these doctors’ practice, that I get blood tests at whatever lab they recommend & then proceed immediately to the gyn-onc’s office for my chemo, allowing me to cut out the day-before-chemo trip into Tucson. What a firestorm that unleashed. Who knew? I thought it was a simple enough solution. But it turned out that half a dozen people, each apparently with a tiny piece of info, tried to address the situation. Some people thought I only wanted chemo from the 1st oncologist, some people thought I wanted to skip the blood tests, some people kept trying to re-confirm an appointment that had been cancelled 4 times, etc., etc., etc. Almost every day brought phone calls wherein we went over the same ground, with me trying to explain that I only want to avoid the 2 trips into Tucson if possible. Of COURSE  it’s possible—that’s what I’ve been doing for the last 2+ years—but it’s been nearly impossible to get everyone on the same page.

 

The whole thing culminated with an angry-sounding phone call from the gyn-onc on Wed. (It’s the 1st time he’s ever called me, while the original oncologist calls me regularly with test results, to see how a new med is affecting me, etc. He also called in the midst of this flap to say, “You don’t need this. You have enough stress in your life.” Amen!) After I had a chance to give the gyn-onc a more complete version of the facts, he calmed down. But he said I should not have used his practice’s patient portal to make my request. WHAT? What’s it there for? Why is “Send a message to your doctor” the 1st thing you see on the home page? Why are they encouraging sign-ups for the patient portal every time you visit?

 

The gyn-onc guy complained that he & others from his practice had wasted hours trying to accommodate my request. If they did, it was unnecessary, since the original oncologist’s P.A. & I had earlier resolved the entire matter . But who knew the 2 offices didn’t communicate with each other? Not me. The gyn-onc’s diatribe made me dissolve in tears & I had to hang up, so I’ve written a short letter of apology which also outlines the WHOLE matter for him—if he bothers to read it.

 

I think I know the source of the problem. A nurse in the gyn-onc’s office is, I’m convinced, suffering from early Alzheimer’s. She was the original contact when the confusion began; & she can’t understand or remember much, or even anything, of what I say. I once knew a woman who acted just like this nurse does. Sure enough, it wasn’t long before this other woman was totally mentally incapacitated. I just hope someone figures out what’s wrong with this nurse before she starts pumping chemo drugs into my veins.

 

So now I go on Tues. for chemo & have to deal with some of these people. Those I’ll see on Tues. are entirely sympathetic & understanding of my viewpoint. But I’m hoping I won’t have to rehash the whole matter again. Time to move on. And time for me to hope all concerned still are willing to provide the best care. 

 

Here I go, in TMI mode again. Just had to vent. Doug sympathizes, but I can see he’s very weary of the whole thing. The good news--have I buried the lead?--is that I think after just one dose in what was supposed to be a temporary arrangement, the new chemo drug appears to be working! I was told I'd have to wait 2-3 months to see any results, but the abdominal pains/twinges I had before the 1st dose are gone.

 

Thank you for reading this far, & enjoy your turkey!

 

anner1017

Vent away!

Hey Seatown,

I just wanted check in and see how your appt went!  

I've only (mostly)been reading posts, and briefly visiting the chat, but I have to tell you, your story hits so close to home it's scary.  

My mom is currently in Arizona for her winters, but was orginally in CT when she was diagnosed, and has since sold her home there to spend summers here in Vermont to be near family and friends.  Talk about a nightmare with organizing doctors, medication, chemo and labs!

It almost sounds like your walk and hers are parallel, 3rd reccurrence, more tumors in her upper abdomen, but she can't even pronounce the new chemo cocktail she's on.  

I look forward to hearing good news from you!

Keep the faith and pass the leftover turkey!

A-

seatown

anner1017 said:

Vent away!

Hey Seatown,

I just wanted check in and see how your appt went!  

I've only (mostly)been reading posts, and briefly visiting the chat, but I have to tell you, your story hits so close to home it's scary.  

My mom is currently in Arizona for her winters, but was orginally in CT when she was diagnosed, and has since sold her home there to spend summers here in Vermont to be near family and friends.  Talk about a nightmare with organizing doctors, medication, chemo and labs!

It almost sounds like your walk and hers are parallel, 3rd reccurrence, more tumors in her upper abdomen, but she can't even pronounce the new chemo cocktail she's on.  

I look forward to hearing good news from you!

Keep the faith and pass the leftover turkey!

A-

A-OK!

Hi, Anner1017--thanks so much for your interest. My chemo appointment on Tues., 11/25, went fine. I knew it would, since it was with my original oncologist--the ultra-nice guy. We briefly discussed the misunderstandings about appointments/labs/etc & agreed--"We're moving on!" 

Only disappointment is that I don't yet have a CA125 result from last Tues. The oncologist said he would call me as soon as he had it, so I was awaiting a phone call all day Wed. which never came. I think there may be another little mix-up. All my other lab results are posted online on the infamous website, the one I'm "not supposed to use to contact my doctor," according to the OTHER doc (the surgeon).  But no CA125 there, so the lab must not have run it although I know the oncologist expected them to. No matter--I can wait. 

BTW, the new chemo is brand name Doxil, but I don't always get the generic name right. I think it's liposomal doxirubicin.

I'll be posting again soon on my cancer blog at http://www.CaringBridge.org/visit/CaroleSeaton

Thanks again for your interest!

Carole