What if my new doctor hates me?

seatown

I posted what's below on my Caring Bridge blog a few days ago, so some of you may already have seen it. But I was just wondering if anyone else found themselves in a situation where a doctor was apparently alienated. Does it matter?

I don't have ovarian cancer, but this same doctor I've described below once told me I should tell people I have ovarian cancer because nobody ever heard of my cancer: primary peritoneal cancer, which I understand is less than 1/10 of 1% of all cancers. But PPC is treated the same as OC.

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.

 

Thanks for reading this far, & enjoy your turkey!

 

Kaleena

Hang in there!

I had the same trouble with using the portal to send messages.  It says clearly on the portal if you want to ask your doctor a question, you can email him.   So I did regarding a recent scan that I had and I had some questions.   It was a Friday and I assumed anyway that I wouldn't hear back until after the weekend.  However, I did get a response.  First to say that they got my email.  Then from a nurse or someone who indicated that both my doctor and the PA were out of the office and that if that type of question, I should call the office.  Go figure!   Also, I don't use it to make appointments anymore either.

I also have this 3 strike rule.   Because my original doctor retired, and I had to find a new one, I have been through several physicians.    I find out now that I dont even wait for "3 strikes".   If we don't click, then I will find another physician.    Its hard and scary thing to do, but it is better to find someone that you are compatiable with then to worry about every time you call or if the staff is so messed up that they are not relaying questions to the doctors or they are not taking the information down right, both of which has happened to me.

Having to feel the need to apologize you should not have to do.    It should be the other way around.   You should never be made to feel uncomfortable by asking quetions and if you do then that phsycians office is not the place for you.   It doesn't get better by staying there and then you are always wondering if they are relaying the right information to you.   Way too much stress!   IF you think they were having a bad day, then just let it go, and don't bring it up to them again.  They probably already forgot about it.

But since the treatment seems to be working and if you can get past the mumbo jumbo of the staff (as long as you are proactive with everything), then take a breath and just be on guard and you will get through it.   Hang in there.    Glad you can vent.

Have a Happy Thanksgiving!

Kathy

NoTimeForCancer

Wow!  I don't think you are

Wow!  I don't think you are the bad guy here, the problem that two offices can't communicate sounds more like it AND the doctor should step in and tell everyone - STOP!  He should remind them that their JOB is to care for everyone he treats and if you don't like that - then please don't hesitate to find a place where patients are not first.

Your cancer is very rare, and that has to be very isolating as it is, and then to be in this merry-go-round ride is so sad to hear.

I would probably just walk in, smile, and ask how everyone is doing the day of treatment.  Peace to you.

kimberly sue 63

Sorry to hear of your

Sorry to hear of your troubles. It is so frustrating when you are misunderstood. Glad your pains are gone and I hope treatments continue to go well. Kim

seatown

You made my day!

Ladies, thanks so much for your comments. Just hearing from others who can relate to what happened helps immeasurably. I know this snafu is really not my fault & I shouldn't have to apologize. A part of me wanted to write the "letter of apology" to set the record straight, so that the offending doc would realize he was way off base. Originally I made my living as a writer, & if I do say so myself I'm still pretty good at it. So that letter was couched in very amicable terms, but it outlines clearly (from my point of view at least) that it was his office staff that screwed up. If the doc reads it, I'm pretty sure he will be apologizing to me.

Part of the reason that this upset me is that I don't have unlimited options. As you all know, you want the best treatment from a gyn-onc specialist, & there aren't that many of them here in Tucson. I do have the option of the AZ Cancer Ctr at the U of AZ med school. I have already been treated there by the head of the women's cancer program for an earlier tumor that turned out benign, & I saw her early this year for a 2nd opinion. And there may be other options locally, I just don't know.

Again, thanks for your comments. If anyone who hasn't seen my "cancer blog" is interested, it's at http://www.CaringBridge.org/visit/CaroleSeaton

Stay tuned!

Carole

Alexandra

I am a "difficult" patient

The most important thing is that the drug is working. It's great Carole. Everything else could be filed under "$**t happens".

I had my share of scheduling and communication problems with my cancer center, where voice mails went un-answered, I was put on hold or transfered to clueless people, asked for the same information multiple times, told to come back tomorrow, etc. It has all been complicated by the fact that every month I saw a different resident-doctor, most of them are from foreign countries and speak little English.

At the other Cancer Center where I had hysterectomy and chemo they had an awesome online portal where all medical records, doctors' progress reports, CT scan results, appointments were stored in pdf format. I would review my records online before I saw the ONC, so I could prepare questions and intelligently discuss alternatives.

At my current cancer center their data management is relatively low tech. Early on my new ONC tried to patronize and rush me. I quickly put an end to that. We have a great equal relationship now.

I found a nice nurse who agreed to communicate with me by email. I send her concise bullet point instructions of what I need done / scheduled / faxed / communicated to the doctors / pharmacy. I always end emails with "please confirm to me in writing by end of business day". I trained her to text me my CA125 the day of the blood test. It never fails. Once she texted me the result at 6am the next day and apologized for being late.

In the past I used to beg for special contrast before CT scan that doesn't cause nausea. I got all kinds of run-around, told to get a letter from the doctor. I get CT scan every 8 weeks. Now I phrase it like that: "You will bring me XXX contrast". They do, no questions asked.

3 weeks ago when I came back from Jamaica and had some strange foot pain, I complained to the ONC and he said to get my family doctor to send me to X-Ray. I said no, I'm at the cancer center and it is more convenient for me to get the X-Rays here and now. Half-hour later it was done.

My advice: in relationship with medical staff (or anyone else) clearly state what you need done and when and do not take no for an answer. Dominate without being rude or difficult. You are not a victim, you are a paying customer. They will respect you more for it.

poopergirl14052

Alexandra said:

I am a "difficult" patient

The most important thing is that the drug is working. It's great Carole. Everything else could be filed under "$**t happens".

I had my share of scheduling and communication problems with my cancer center, where voice mails went un-answered, I was put on hold or transfered to clueless people, asked for the same information multiple times, told to come back tomorrow, etc. It has all been complicated by the fact that every month I saw a different resident-doctor, most of them are from foreign countries and speak little English.

At the other Cancer Center where I had hysterectomy and chemo they had an awesome online portal where all medical records, doctors' progress reports, CT scan results, appointments were stored in pdf format. I would review my records online before I saw the ONC, so I could prepare questions and intelligently discuss alternatives.

At my current cancer center their data management is relatively low tech. Early on my new ONC tried to patronize and rush me. I quickly put an end to that. We have a great equal relationship now.

I found a nice nurse who agreed to communicate with me by email. I send her concise bullet point instructions of what I need done / scheduled / faxed / communicated to the doctors / pharmacy. I always end emails with "please confirm to me in writing by end of business day". I trained her to text me my CA125 the day of the blood test. It never fails. Once she texted me the result at 6am the next day and apologized for being late.

In the past I used to beg for special contrast before CT scan that doesn't cause nausea. I got all kinds of run-around, told to get a letter from the doctor. I get CT scan every 8 weeks. Now I phrase it like that: "You will bring me XXX contrast". They do, no questions asked.

3 weeks ago when I came back from Jamaica and had some strange foot pain, I complained to the ONC and he said to get my family doctor to send me to X-Ray. I said no, I'm at the cancer center and it is more convenient for me to get the X-Rays here and now. Half-hour later it was done.

My advice: in relationship with medical staff (or anyone else) clearly state what you need done and when and do not take no for an answer. Dominate without being rude or difficult. You are not a victim, you are a paying customer. They will respect you more for it.

I am sure your new Dr. won't hate you

offices and staff need to get their acts together and communicate with each other. You should not be expected to drive so far for blood draws. Ask if they can fax script to lab near you a few days before chemo...and the lab will get to dr. Hope your chemo goes well  and gets you to remission. Cancer stinks.....stay strong...val

kate1313

Hello Seatown Hope things are better

Hi Seatown

I hope things are going better for you and that your doctors' offices have gotten this relatively simple problem resolved.  It is so difficult when you have to go two days in a row for long drives, esp if one is just for labs.  That seems so silly.  Best wishes for you, praying that things get straightened out.  I feel for you - I'm not supposed to drive - the chemo I'm on makes me dizzy and my vision is blurry so have to try to get transportation from other sources.  I hate to keep asking friends, it gets old for them.  The ACS does provide transportation, voluteer drivers, but they are hard to find.  The ACE will also provide a taxi if they can't find a volunteer driver - that saves a lot, one way is about $60 and I just can't afford the two way fare.  Try them- the number is 1-888-2227-6333 - you have to call at least 4 business days in advance to register and request a driver.  Good luck and best wishes!  Kate

 

seatown

kate1313 said:

Hello Seatown Hope things are better

Hi Seatown

I hope things are going better for you and that your doctors' offices have gotten this relatively simple problem resolved.  It is so difficult when you have to go two days in a row for long drives, esp if one is just for labs.  That seems so silly.  Best wishes for you, praying that things get straightened out.  I feel for you - I'm not supposed to drive - the chemo I'm on makes me dizzy and my vision is blurry so have to try to get transportation from other sources.  I hate to keep asking friends, it gets old for them.  The ACS does provide transportation, voluteer drivers, but they are hard to find.  The ACE will also provide a taxi if they can't find a volunteer driver - that saves a lot, one way is about $60 and I just can't afford the two way fare.  Try them- the number is 1-888-2227-6333 - you have to call at least 4 business days in advance to register and request a driver.  Good luck and best wishes!  Kate

 

Thanks to all!

Thanks so much, Kate, for your suggestions. And thanks to everyone for your thoughtful replies. I think my little tempest in a teapot is resolved. I'm going to receive chemo at my original oncologist's office until there's sufficient evidence that my new course of Doxil chemo is effective (or not). That will solve the lab problem for now, since the lab right there on the premises can do the required blood tests in 90 seconds. Afterwards, if I get chemo at the gyn/onc's office instead, I'll go to another location of his practice--AZ Oncology--which is less than a mile away & also has a lab that can do the testing stat.

There was a suggestion that I should just have the lab tests at a lab in my neighborhood. I should have made it clearer--there are NO labs in my neighborhood; that was the problem. We live in the boondocks, 40 miles from the docs & 40 miles from any lab. 

After one infusion of Doxil, my CA125 number was up again, to 407 from 242 in Oct. I've been told I must wait thru at least 2, maybe 3, infusions before I can expect to see the CA125 drop. Fingers still crossed!

Latest details are at http://www.CaringBridge.org/visit/CaroleSeaton

Thanks to everyone . . . 

Carole