How do I fire and replace my oncologist?

October 7, 2019 9:05 AM

I know that theoretically I can change oncologists for any reason whatsoever, but the circumstances I'm in make it seem awkward and impossible. I could really use some help navigating this.

I have multiple myeloma, and I don't like or trust my oncologist. I haven't trusted her since she tried to convince me to take a bone-strengthening medication with horrific potential side effects by telling me about one study that showed it has anti-myeloma properties, while not mentioning the other study, which showed no such thing. She admitted to knowing about the second study when I brought it up.

Since then, she just has seemed to not pay a lot of attention. More than once, I've gone in and she's said everything seems fine and no changes are necessary, only to decide everything was not fine when I pointed out blood tests that were kind of wonky (I see all my tests before I see her). When I had a bone marrow biopsy recently, she gave me instructions for a drug I no longer take. I wanted to ask the nurse if she pays attention to anything. I also just wish she were more encouraging in general. I don't think it's impossible for a doctor to make you feel like there's hope.

There have been a number of drugs to minimize side effects that I only found out about online. When I brought them up (yes, I'd asked about the side effects previously, and she was no help), she said that she does prescribe them. I asked numerous times about an alternative to giving myself a Lovenox shot every single day and she could only come up with warfarin, which I like even less. When I found another drug that has the same properties, she said that she does give it to people and I can change to it.

The one thing I do like about her is that she respects my desire to minimize blood tests as much as possible (I have horrible veins). When I first went into remission, she said I needed tests once a month. When I asked why, she said we could go to every three months. (I don't want a port because I fence.) She never said why she wanted once a month in the first place. (Sometimes I feel like I'm at "bitch eating crackers" with her.)

So here's the awkward part. I have an HMO. I'm stuck with one cancer hospital. Myeloma is a rare cancer, and there aren't a lot of specialists. There are three others at my cancer hospital. I don't know anything about the other doctors. I don't know if I'll like them even less than I like her, though there's one in particular I'd like to try, based on things I've found out about him online.

I think that as a cancer patient, I should be able to have a doctor I actually like and trust. But how do I handle this? How can I change doctors? What if it turns out to be a mistake? If I could just walk out the door and go to a different hospital, that would seem manageable to me, but changing within a department seems different. One friend thinks that it might be good to talk to my PCP. I've also thought about just sending an email through the portal. But I'm still afraid that I'll end up with a doctor I like even less.

I have an appointment with the oncologist Thursday.

Any thoughts or ideas about how to navigate this would be very welcome.

posted by FencingGal to Health & Fitness (17 answers total)

Can you see another specialist for a "second opinion"? I had similar problems with a doctor I was seeing and I went to see someone else to try them on. They had a different approach, fewer patients, seemed to be able to keep track of things I told them, and be proactive. You are not the first person to change doctors. I'm about to cancel my next appointment with the old doctor and make the transition permanent. (If it had not worked out, I would have just kept my old appointment and not gone to see the new doctor again.) With all you are going through, you need to have confidence in your oncologist.
posted by *s at 9:14 AM on October 7, 2019 [11 favorites]

Hi! I work at a cancer treatment center, specifically with insurance. You're absolutely able to have a second opinion. If you express this to your primary care provider, they should issue an additional referral for you to have a consult with the other oncologist you're interested in seeing. It's essential that you trust your physician. It shouldn't be a problem for your to switch if you end up really liking the other oncologist.
posted by Sara_NOT_Sarah at 9:38 AM on October 7, 2019 [11 favorites]

When I go to a medical or orthodontist practice, I often ask for appointments with specific practitioners. At the pedi, the issue and which child determines who I wish to see or if the PA is okay that day. At the orthodontist, I prefer that we see a smaller subset of practitioners for consistency. I do agree that you should preserve the relationship with your current doctor. But couldn't you simply make an appointment with another doctor because maybe you want another set of eyes on your charts just in case? Or maybe the other doctor's schedule works better with yours that week? There could be many reasons why you want to be seeing more than one of them.
posted by RoadScholar at 9:41 AM on October 7, 2019

Some friends of mine went through this (an oncologist they were unimpressed with) with their son and found out later that the first doctor's case load was so high that dropping a patient was a blessing.

I don't know how they found their new doctor, but in any case you may find that switching is less of an awkward situation and more of a favor.
posted by Tell Me No Lies at 9:42 AM on October 7, 2019 [2 favorites]

IIRC you've already had a second opinion, and in my experience if the second opinion agrees with the first opinion in the broad strokes, it won't necessarily lead to a change in your care team.

I think you need to find out more about the other three doctors before you act. If those are your only realistic options, you want to make sure they're worth it before you stir anything up (I mean, it's possible that your current oncologist wouldn't care at all if you left and went to one of the other practices - it sounds she's pretty careless about you and might not miss you all that much as a patient, but doctors can be as weird as anyone else). Any way to get a consult with one of them? Maybe on something specific, or maybe you just *need* an appointment on a day your current oncologist doesn't take appointments?

Also I totally get wanting to stay at your current center, but are there other options? And how often are your appointments? Even if you were only willing to consider one center when you were initially diagnsed, maybe there's another worth considering now that you're in remission (*no* idea whether this would actually be the possible for you, just spitballing).
posted by mskyle at 9:45 AM on October 7, 2019

Switch. Please switch. Even at that same center. My bestie had cancer and had a situation similar to yours, and to make it even more awkward, she switched to a different doctor in the very same practice. Like, right there in the same office where she'd sometimes pass Dr. #1 in the hall. But once she was over that tiny little hump -- "I'm going to be switching to Dr. X, thank you for your help so far" -- everything was SO MUCH BETTER. Doctor listening to her. Doctor taking the time to suss out the best treatments, the best plan moving forward, how to change the plan if/when it wasn't working, etc.

Here's the thing: if you're a regular poster here you might recognize me as a person who posts a lot about "my best friend with cancer" and you may even already know that my best friend did indeed die of her cancer. But she and I were both totally convinced that she lived much, much longer because of her new doc's treatment. We loved that doctor, and he cared for her so much he actually came to her memorial service. I'm convinced that he was giving everything he had, professionally, for her cure, her remission, even just more years living with cancer. She didn't get it, ultimately, but you deserve a doctor like that too.
posted by BlahLaLa at 9:56 AM on October 7, 2019 [12 favorites]

Response by poster: Thanks everyone who has answered so far. A few things:

I'm in the process of getting a second opinion tonight with an out-of-state doctor (paying out of pocket). When I asked my oncologist about a second opinion, she only recommended other cancer centers, not another doctor at her center. The doctor I'm interested in is very new - he's replacing someone I had previously wanted to change to, but who left the center.

I'm actually just coming out of remission and about to need a treatment change.

There is another hospital that might take my HMO. However, that would mean traveling an hour rather than ten minutes, which wouldn't be bad for appointments, but would be a problem for emergencies and tests that require a driver. I know of one person who likes the specialist there, but I'm sure lots of people like my oncologist too.

In case you can't tell, I'm very conflict avoidant.
posted by FencingGal at 9:56 AM on October 7, 2019 [1 favorite]

Like you, I am very conflict avoidant.
I have been through cancer treatment and saw who I believe to be the best oncologist in the world while I lived in Seattle. I moved to Arizona and had to look for a new oncologist. I saw one, who I had no personal connection and little trust when he asked an odd question about a prescription that I use. I wanted to drop him right then, but felt bad about it. When my next appointment rolled around, I made the decision to see someone else. YOU are the most important person in the doctor patient relationship. You need to have trust and belief in your team. Personally, the extra drive time, is worth everything if it means that you feel better about treatment and your provider.
posted by jennstra at 10:21 AM on October 7, 2019 [3 favorites]

I won't speak to other issues you've mentioned (as I don't know the specifics) but I can tell you that lots of oncology practices have a policy against switching to other providers in the same office. The rationale behind this is that if you switch to another doctor in the practice (which happens - often for the reasons you've cited), and the physician you switched from is covering for your new doctor in the office, or in the hospital if hospitalized, it can be problematic.

I am an oncologist and I often encourage people to get second opinions. This is important stuff, and you deserve to see someone who you feel comfortable with, who listens to you, and who validates your concerns. I have had a number of patients who have seen other doctors (typically out of concern for my age) who come back because they see a difference in how I practice - I spend lots of time with my patients and always want them to feel confident in the action plan. But I'm never offended if they choose to go another way - I don't know everything, there are treatment considerations that I might not have, and sometimes, you just don't click with a patient.

Get a second opinion. Don't feel badly about it.
posted by honeybee413 at 10:24 AM on October 7, 2019 [7 favorites]

I'm someone who doesn't feel much social awkwardness, so I'm often the go-to person for taking coffee back that hasn't been made properly, talking to customer service reps about unsatisfactory service, or having other more serious negative conversations. People almost invariably respond really well to me. I think the key to success here is to be calm, matter-of-fact, cheerful, determined, and not go down rabbit holes of explaining things (in fact, typically don't explain at all, because then you give your interlocutor a foothold to argue with you - a Miss Manners tip). Also, I've found that often, the person you're engaging with interprets the situation from your own response. So you just need to believe that what you're asking for is totally reasonable, and you need to present it without blame or negative emotion, with the assumption that your listener is on your side and wants to work with you constructively to find a solution. In your case, that might go something like this:

You: "Doctor X, I've decided I'd like a second opinion with Doctor Y [at the same center]. I'm going to go ahead and schedule that with the front desk after we're done today."

If she asks why, don't give substance beyond saying something like "Well, I think it's always good to have a second opinion/get a second pair of eyes on my chart". Smile, be cheerful and pleasant and don't give particulars, don't be negative, don't give criticisms of her, and don't allow yourself to be led into extended discussion about this. If she tries to get you to to elaborate, just basically repeat what you said initially (again, the Miss Manners technique of "I'm sorry but I'm afraid that won't be possible"). Couching it as a second opinion softens the blow, it allows you to come back to Doctor X if you end up not liking Doctor Y, and it's factually accurate at this juncture.

I'd try switching within the same center - it's totally unnecessary to do a two-hour round trip to avoid awkwardness! But if, as honeybee413 says, they have a policy against it, I'd still recommend seeing if a doctor at the further-away center is better. You deserve to have a doctor you trust and feel comfortable with!
posted by ClaireBear at 10:28 AM on October 7, 2019 [8 favorites]

So I've had this with another specialist (happily I really liked my oncologists!). I asked two people, an office manager and a nurse, which doctor they would see at the practice, stating it was off the record of course. Both said the same thing, and I just called and asked if I could see that doctor the next time. It wasn't a big deal, they said yes, and that was it. YMMV, but I'd try asking anyone else you talk to - scheduler, receptionist, etc. if they had to go or their spouse had to go, who would they pick? See if there are consistent answers and if so, ask to see that provider.

Adding that I did the hour drive to see doctors I liked rather than get care I had questions about at home...so yes, that can be a worthwhile alternative if needed, too.
posted by OneSmartMonkey at 10:31 AM on October 7, 2019 [3 favorites]

if a dear friend or family member was in this situation what would you reccomend?
I do not know you but, I know you deserve better. Trust your gut and switch, you got this!
posted by TRUELOTUS at 10:42 AM on October 7, 2019 [2 favorites]

I think you should look at this like fencing. You have been playing defense. Now is the time to make a lunge. You're about to go into remission. Now is the time to take the chance to change. Not liking a doctor's bedside manners or especially their course of action is fine grounds for changing. If your current doctor does not like it or appreciate it, that is their problem, not yours. Do what is right for you. You are your biggest advocate.

Good luck.
posted by AugustWest at 11:27 AM on October 7, 2019

i was in this situation with heart failure. patient at the heart failure clinic, but did NOT like the doc i was assigned to. i asked the nurse practitioner if i could see other doctor instead. she said i'd have to wait to fit in to his schedule as a "new patient" but otherwise no prob. i did this asking via the patient portal. so, do it! and it is fine if you take the anxious person's way out :)
posted by misanthropicsarah at 11:31 AM on October 7, 2019

Does your hospital have a hospitalist? It might be a good idea to bring up these questions with one and see what they can do within the institution.
posted by late afternoon dreaming hotel at 11:34 AM on October 7, 2019 [1 favorite]

Oh my god, as someone who has lymphoma, please, please switch! She really won't care, and if she does, who gives a shit? Try one doctor and then try another one, and then try the last one if you don't like that one. She's not home thinking about you or writing metafilter questions about you; it sounds like she's not even thinking about you when you're in the room with her. This doesn't make her a bad person, but it makes her a bad doctor for you. Stand up for yourself, especially if you're coming out of remission, and switch. You can probably do this without even a face to face conversation. Memail me if you need a pep talk!
posted by heavenknows at 12:19 PM on October 7, 2019 [7 favorites]

Switch.

We (for someone else, not me) drove an hour each way -- often with long waits! -- for an awesome oncologist, and it was totally worth it. We met with two specialist oncologists very close to home, but ultimately the Awesome Lady Doctor in the big city was the best fit in terms of temperament and outlook and training and techniques. None of the three batted an eye at the fact that we were shopping around: we we up-front about it.

(And the plastic surgeon -- with whom we had the much long relationship -- turned out to be a really awesome guy, too.We are glad that we listed to the oncologist's recommendation, and ignored his resemblance to Glenn Beck!)
posted by wenestvedt at 12:47 PM on October 7, 2019 [2 favorites]