What to do when doctors disagree?

I am under the care of four doctors right now…my primary, my surgeon, my chemo doc, and my radiation doc.

Now, “under the care” doesn’t mean I’m in the hospital…just that while I’m going through this breast cancer stuff, these four people will be in my life for a few years.

Before my surgery, my surgeon and my radiation doc (RD) said I needed a lumpectomy. My chemo doc (CD) said I needed a mastectomy. Fortunately, my surgeon made the call for a melon baller to the ladies rather than a carving knife, so I still have Lefty.

I have an appt with CD next week, so he ordered some tests for me this week, a PET scan and a CT scan. Since I am a multitasker at heart, I took Tuesday off, saw the dentist, had the PET scan, then saw RD.

RD was surprised that I’d had a PET scan, since it had been six weeks since my radiation treatments concluded. He said that normally you wait three months, since your body is still healing from the radiation and a PET scan may show a false positive. He said he’d been part of a practice that did a lot of research on this, and he even wrote a chapter in a book on this topic. He told me not to freak if there was something on the PET scan, but to wait another six weeks and have another one.

Does CD not know this? When I see him next week, if something does pop on the PET scan, I will tell him what RD said, but what does a patient do when there is more than one doctor treating you and they disagree on treatment and tests and such?

I would get a third opinion, or chose the approach that makes most sense to you. If the doc won’t abide by your decision, fire him and find another.

That’s a bit difficult, as CD did all my chemo treatments and I have to see him on a regular basis to get my port flushed. I don’t think another chemo doc would be willing to step in at that point.

I think this is ideally what your primary care doctor should do - marshal the troops and resolve conflicts. I would get in touch with him with any issues that are unresolved between the other two. At best, he’ll do teh research for you, and he should have more contacts within the field such that he can call people to get a “third” opinion, even if that opinion doesn’t involve you seeing a new doctor. That’s one of the joys of medical school - you end up with friends who are specialists.

Oh.
Slinking out of thread now.

My MIL had problems with her cancer docs disagreeing during her treatment (cancer in her nasal passages- :eek: ). Once, her radiologist and oncologist got into such a fight over disagreements in her treatment plan that she thought they would come to blows… She finally got in between them (she used to negotiate between Teamsters and labor) and impressed upon them that none of this was helping the process of getting her better… :frowning:

No advice, but even with bumps in the road, the outcome can still be great. MIL is still here, making my life interesting on a daily basis! :wink:

No, don’t go! It’s good advice, and if I hadn’t been so rushed between diagnosis and surgery I would have asked my surgeon to refer me to another CD.

I would ask RD to please call CD and consult with him about it, then find out what the consensus is. They should be working together and aware of any concerns that the other has.

Thanks, but my attitude is likely considerably more cavalier about such things. I don’t go to doctors unless I’m bleeding buckets or in serious pain. That, and I have no particular desire to live. I don’t expect to see 50, so the clock is winding down now anyway.

Is your “primary” a GP solely, or also acting as oncologist?

Get involved in a breast cancer support group. The people in it might have insights into your various doctors that may help you resolve the problem.

I am involved in a local support group, and my primary is a GP. After my mammo came back last year, she’s the one who referred me to my surgeon.

We’ll see what happens on Monday with CD.

If you’re comfortable with the GP’s overview, go with their direction. Relating what an oncology nurse told me, CDs and Rds tend to have tunnel vision in their specialty- your surgeon, if specialising in cancers of the breast, would be more compelling- but ultimately you have determination, though I am aware insurance has a factor too.

If the one doctor has done research, it is likely recent enough that your other doctor hasn’t seen it, or new enough that he thinks it has not stood the test of time. The “test of time” line is one my doctor once used to excuse treating a stomach ulcer I had with diet rather than antibiotics, so I personally am leery of it. The stomach ulcer cleared the next time I went through rounds of antibiotics for something else.

Many doctors develop a method of treating an illness and keep that method until they die. Others get caught up in trends adopting whatever is new as “newer is better”, and others follow current research, and what their colleagues are doing, adopting parts which they feel stand up to scrutiny, and also adjusting treatment based on what they see works in their patients.

Can you read the paper and judge for yourself if it is rigorous? Can you look up to see if others refer to it in their own papers as if they take it as reliable? I know this is asking a lot, but that is the kind of thing I found helpful when I was sorting through options when my son had an unidentified tumor on his back. I did not know any of the doctors involved or anyone who had been their patients. I discovered that one of surgeons that we had been referred to wrote a paper on minimally invasive surgery in infants, and that paper was widely referred to in other papers about surgery in infants. It helped me trust her judgment.

It also helped me build my medical vocabulary enough I could get the doctors to quit giving me the layman’s version. Last week we found that David’s head is freaking-off-the-charts-huge while at an appointment. The doc came in and after interviewing us about David’s symptoms dictated his notes on the MRI films in front of us. I could see for myself and understand from his words that there is no visible sign of anything bad that is causing his head to be freaking huge and so doing nothing but MRIs every 6 months seems like a reasonable treatment.

My gut says that your RD is probably right, but if it were me, I would be reading that paper and anything else I could get my hands on. Part of what I base that on is what I have read about PET scans. They are sensitive to odd assed shit to begin with, like if you have recently gotten chilled. I do not understand why what would make a difference if you are warm when the scan is taken, but from what I read, it does. Mind you, nearly all the stuff I read about is focused on nerve tissue, not breast tissue.

I hope you feel better soon and recover completely.

Thanks, lee. Funny you mention being chilled…the PET scan was done in a portable transport, and they kept the room at 63 degrees to keep the equipment from overheating. So, I was bundled up like a mummy in blankets for the scan!

I’ll have to see if I can track down that paper my RD wrote…I love Google.

ivylass- This might just be a case of you medical oncologist being more risk averse than your surgeon and radiologist. They prefer radical surgery, and not waiting an extra 6 weeks, the surgeon and the radiotherapist are a bit happier to deal with uncertainty.

At any rate- trust your surgeon with surgery, your radiologist with radiotherapy and your oncologist with chemo… those are their areas of expertise.

If there are disagreements, YOU should not be piggy in the middle- your team should act as a team, talk to each other as a team and make team decisions before presenting you with a mutually agreed plan of action so that you can agree or disagree with it.

Bring this up with your primary care doc, ask them to advocate for you and get them to get your team back on the same page again, ensuring that they don’t quibble about each other’s strategies to you, but instead talk to each other about it. One good sit down (or phone conference, or whatever) should iron this out.

I don’t know how it is in the US, but here when a diagnosis of cancer is made a case conference is called between all the specialists who are likely to be involved (palliative care, oncology, surgeons, radiologists, medics…everyone who might have a dog in the fight). Then these guys hammer out a treatment plan with built in contingency plans, and the patient gets to add their two cents once all the docs are on the same page (which can sometimes take a while).

That way the bad mouthing and second guessing happen behind closed doors, the docs iron out the differences professionally and the patient gets a united front. A mutually agreed plan is made so no one starts criticising what everyone has agreed to do.

I’m not saying it always works, but it tends to avoid patients being in the awful position you have found yourself in.

If doctors have a concern about each other’s routine practice, they should bring it up with the other doc, NOT with the patient. It is unprofessional to cause a patient to lose trust in their care provider unless you believe them to be negligent or guilty of malpractice.

While I don’t want doctors to bicker in front of me, I am quite comfortable with them disagreeing in front of me. Presenting a united front is not as helpful as truthfully presenting treatment options and representing differences in opinion over treatment options honestly. There were some times in my son’s care when more than one option was available and his doctors did not agree completely. They told me what the disagreement was about and gave me information to consider.

My SO almost died because of the advice of two idiot doctors, and I do mean idiots. One woefully misdiagnosed his illness, the other got it right but said there was nothing we could do and he had six months to live. We finally found a doctor who had read a medical journal recently and it saved my SO’s life. Just about 5 years later now and he is in better health than ever.

I am a firm believer in the squeaky wheel gets the grease. It is YOUR life, and damn it, stop being NICE! Ask the hard questions; make them debate, have them scream at each other; make one prove the other is wrong or right! Plus, if you don’t like what they say, damn straight go to another doctor, and another if necessary.

Doctors are human; some study up on new science, others coast by on what they learned last year, five years ago, or even ten years ago or longer; their philosophy is that it is “good enough”.

Not only that, but Google is your friend. I had a skin condition and went to a specialist - they diagnosed it as incurable and gave me the name of the condition. I Googled and found that the condition was 95% prevalent in African Americans (which I am not) so I went to a different dermatologist to see if I was indeed one of the unlucky 5% of caucasians with this condition; and yep, it was misdiagnosed.

Again; go to another doctor, or ask, ask, ask until they are forced to do some research and agree on a treatment. This is really not the time to be nice.

ivylass, if there is anything I can help with in research, I will be glad to do my best to help.

Too late to edit this statement, but what I mean is, I was wondering how I personally, statistically, fit into that group - not that anyone deserves to have such a medical condition! It just struck me as very odd and rare, and later proven to be wrong.