Have not found the right doctor
I am on my 5th oncologist. He is an asshole (medical gaslighting). Good thing he left to practice at another facility. I am hoping the one to replace him won't gaslight me or would at least give a fuck about my wishes. To those who found the right one, how many oncologists did it took to find the right doctor?
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Lotus, very frustrating not to have confidence in your MO. I switched to a regional cancer center when I was diagnosed stage 4. Tried the initial MO, but I did not feel that she fully comprehended the complications or variations in stage 4 versus stage 1. Not gaslighting , just "go by the book" , standard treatment . Requires a 3-hour drive and normally an overnight stay, but my DH is fully supportive. And being a regional center they are used to out of town patients and group the appointments together to limit inconvenience for the patient.
But we are all different in what we need. I like their empathy, listening skills and explanations. I rely on their advice medically, don't do initial research, don't recommend which drug I should try next. But I do ask questions about what they are proposing as next treatment. I consider my responsibility to manage and alert regarding side effects which I might do in excessive detail sometimes.
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I’ve only had one, the MO from the original team assigned to me when I went to MDA for my initial visit. At first I had concerns about her being so young and lacking experience. She also seemed somewhat cold and dismissive. After a couple months, I approached her with a deal on how we could work together better and 6 years later, it’s still a great partnership. Maybe a discussion upfront would help, if you haven’t already tried that.
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I'm on my second MO through no fault of anyone. My first one I loved. She was there through my initial diagnosis and the first year of stage IV diagnosis before retiring. The one I have now is okay. I've worked with him for about a year now I think. He's knowledgeable and I trust his expertise and recommendations. He just doesn't have the same laid back friendliness that my first MO had. He is very reserved and says "uh huh" after all my sentences. That may be a communication style to let me know he's listening but it can make me feel tense or rushed. That said, I don't feel care is substandard or that I'm not being heard so I am content to keep working with him. I'm interested to know if others have had to switch providers and how that works with insurance and providers within the same clinic.
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I’m on my 4th. Lost the first because my insurance and his statewide practice had $$$ disagreements. 2nd just didn’t like her, or the office. 3rd retired. I liked him. #4 I’ve been with since my reoccurrence. I like him, he doesn’t talk down to me, answers my questions in a way I understand. I’ll keep him.
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Second. I had three meetings with the first. Dr. R/ Once for an overall check-up. The second was to have her walk into the room and say "I'm sorry but it is Stage IV with mets to the liver" then handed me a box of tissues and left the room. She returned a while later with a sketch of what I guess was my boob with a circle showing where the mass was and it as HER? H? ER? ---- it was a blur. The she said the treatment would be taxol for 6- 9 months with H&P, then H&P until it stopped working. The centre would call me when a chair was available.
That was it. Not exactly an encouraging or remotely hopeful/helpful appointment. Then I waited and waited for the call. I called the booking desk repeatedly and kept getting the same answer. "We'll call you" This was Vancouver Coastal Health's BCCA. Five weeks passed.
In the meantime my DH was at a ukulele group and one of the women there mentioned Dr S who was attached to Fraser Health. Our healtch care is divided into regions which can literally be separated by a major road. But it is not a network and a person can live in one health authority area and still see medical personnel at another. I asked my GP to send a referral for me to see him. That was on a Thursday of a long weekend, Friday being the holiday. Monday his office called me to come see him the following week on Tuesday..
THEN - I got a call from BCCA saying come in that Friday to start treatment. Of course I went.
I showed up on the Tuesday to see him. OMG. He was warm, encouraging, felt terrible that I had to wait so long. He said they always try to get someone in within two weeks. He accepted me as a new patient and sent for my records from Dr R.
She had me come in because I was changing MO's and wanted to say she hoped I might come back to her. Not hardly.
All I can say is if you can find a MO you dislike, for any reason, try to find another where possible. As my DH says "All MO's are doctors but Dr S is a healer"
I am sorry for you ladies who have to deal with networks and insurance. That sucks
edited to add: four years in May (I hope!)
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threetree,
I did go to Mayo in person in 2016 when I was first dx stage1A, but it is a 3 hour drive, so decided to do video visits and have been satisfied.
Since my last visit was in 2016 I had to re-register as a new patient. I did all this last fall, so I don't remember every step, but I did write a few notes.
I started by calling their Clinical Trials office - Lisa at 507-284-1072. On the Mayo website the number is 855-776-0015 (toll-free). I explained I was interested in "A Fresh set of eyes, discussion of any and all treatment options including clinical trials". That got the ball rolling, but there could other good ways to make first contact with Mayo. They of course have a good website.
As I recall the person I talked with in Clinic Trials (Lisa) collected basic information like diagnosis and said my records would be collected and evaluated by the Oncology Team and a decision made about setting up an appointment.
Mayo did all the work of collecting my medical records. Mayo uses EPIC as does my local provider. This was a huge benefit over Dana Farber's on-line second opinion program, which I started but then back out of because of all the rigmarole and cost.
I did spend a lot of time on the phone with Mayo....often on hold....but when I would finally talk with someone they were always helpful and got whatever the issue was taken care of.
Here are the phone numbers from my notes:
Mayo Oncology - 507-284-4237 - New Registration
Release of Information Dept - Katie or Alex 507-284-1072
Customer Service 1-877-858-0398 - to set up Patient Portal
Breast Secretaries - 507-293-0526
On-line Service for computer issues 1-877-858-0398 - option #5
I really like the doctor I was assigned to. Not only is she a good clinician, very thorough, but she is warm, wholistic in her advice, and a good communicator. My first video visit was an hour and it was clear she had read over my records. I've had two follow up video appts (about 20-30 minutes each) with her that coincided with my local scans. I have sent her several questions through my Mayo portal and she had answered them all. She has agreed with my local MO's plan of care, but I feel "better cared for" by her, compared to my local MO. I'd transfer my care to Mayo, but I don't want to make the drive for the scans, etc.
Medicare and my secondary insurance. have paid for all these second opinion appts so far. Recently Mayo asked that I send my scan images in addition to the radiology reports, which I did. The doctor brought the scans up on the screen at my last visit and we talked about them. But because Mayo radiologists also read the images, I'm guessing there may be an additional charge this for, so I may ask my medical records to stop sending the images. I know my Mayo MO would prefer to look at images rather than just read a report, but I don't want to pay for this.
Mayo's video visits are well managed by them and fairly easy to follow, even for me at age 74. They call you about 3 days ahead of your appt to get ready for the visit and then you log onto your account the day of the visit to open the link.
Based on my experience, I'd recommend Mayo.
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The first MO I saw was because my DH thought he recognized his name- my surgeon was skeptical, but, I saw him once. He was awful- left the room 5 times and then just talked statistics. Then I got advice from my GYN at the same hospital and he recommended my second MO- a great MO who I loved, he shepherded me through chemo and other treatments and then retired at 60 (said it was an intense job and people work too long)
Now I see his colleague for the last 7 years and I love her. She is conservative in her approach I guess, although I have learned to love that- (she did work at MD Anderson in Houston for 10 years after her fellowship there and did lots of consults, second opinions etc) I see her with video visits since the pandemic and she answers emails within hours. I can make suggestions and we go back and forth- she is upbeat and very interested in me thriving, going traveling, flexible re many things and always asks if her suggestions make sense etc
I have gotten a few second opinions from UCSF which is near me and they haven't recommended anything different from my MO. I somehow thought that I could be in cutting edge trials and avoid IV chemo- but, bone only mets pretty much excludes you from trials- you need a non-bony biopsy- nothing to biopsy but bone for me.
I try to keep myself informed and that helps me feel comfortable with care- I know what she suggests makes sense and not just trust blindly.
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