How do second opinions work? Cancer edition.
June 20, 2019 1:16 PM Subscribe
Sixteen treatments in on this Stage IV colon cancer journey and the numbers we see are disappointing. Different insurance in the new year means we have another opportunity for care. So how does that work?
* Does insurance (ours is Premera BCBS) cover the expense of a second opinion? A third opinion?
* Does the second-opinion provider (i.e., Seattle Cancer Care Alliance) do the work of requesting the files and scans, and will they have any trouble doing so?
* Will they have already done their due diligence on medical history, scans, etc., before they see us?
* What if we'd also like a naturopathic oncologist to weigh in, because a) they have one and b) all guns a'firing.
* Anything we should take with us or be prepared to ask when we get the appointment?
* Stupid-WTF-do-we-care question: Is there ever any weirdness from the primary care team when they hear we're getting a second opinion?
And generally seeking feedback... we are conflicted about what happens next. What we want to hear is that we're getting the best care with the recommended approach. Of course it would also be great to hear "hey wait, there's this new magic that could save your life!" ...which would then mean our care team is perhaps not doing everything right. We want the second opinion for confirmation, but also to hear about options. We like our doc and love our nurses, but that's not going to keep us from changing our approach if there's a chance of something better.
Maybe TMI facts: Mr Origami is 45 and not eligible for surgery because the cancer is too widespread, he looks healthy and doesn't feel sick except for the side effects of chemo, which royally suck. He can no longer work. Treatments started last November and happen every other week; scans every 8 weeks. His CA 19-9 dropped from 1690 to ~400 and began climbing in recent weeks since he stopped the oxaliplatin (after 10 treatments).
Appreciate the feedback, thanks all.
* Does insurance (ours is Premera BCBS) cover the expense of a second opinion? A third opinion?
* Does the second-opinion provider (i.e., Seattle Cancer Care Alliance) do the work of requesting the files and scans, and will they have any trouble doing so?
* Will they have already done their due diligence on medical history, scans, etc., before they see us?
* What if we'd also like a naturopathic oncologist to weigh in, because a) they have one and b) all guns a'firing.
* Anything we should take with us or be prepared to ask when we get the appointment?
* Stupid-WTF-do-we-care question: Is there ever any weirdness from the primary care team when they hear we're getting a second opinion?
And generally seeking feedback... we are conflicted about what happens next. What we want to hear is that we're getting the best care with the recommended approach. Of course it would also be great to hear "hey wait, there's this new magic that could save your life!" ...which would then mean our care team is perhaps not doing everything right. We want the second opinion for confirmation, but also to hear about options. We like our doc and love our nurses, but that's not going to keep us from changing our approach if there's a chance of something better.
Maybe TMI facts: Mr Origami is 45 and not eligible for surgery because the cancer is too widespread, he looks healthy and doesn't feel sick except for the side effects of chemo, which royally suck. He can no longer work. Treatments started last November and happen every other week; scans every 8 weeks. His CA 19-9 dropped from 1690 to ~400 and began climbing in recent weeks since he stopped the oxaliplatin (after 10 treatments).
Appreciate the feedback, thanks all.
You should review your insurance contract for the provisions concerning second opinions. I would do that before calling them, so you're starting from an informed basis.
posted by praemunire at 1:39 PM on June 20, 2019
posted by praemunire at 1:39 PM on June 20, 2019
This was our experience getting a second opinion at, and ultimately transferring care to, a regional cancer center:
We had a PPO plan which covered the nearest regional cancer center (it was about 3 hours away). We told our local oncologist that we wanted to get a second opinion there, and we asked if he would recommend anyone. He told us which doctor was the expert in our kind of (rare) cancer, and even called them up for us and "referred" us (not completely necessary, but it got us a call back from this doctor's scheduler very quickly). Yes, this conversation felt awkward at the time, but our local doctor was very understanding and not offended at all.
IIRC we had to fill out a form and give it to our doctor to send over the relevant records. I think this is true in all of the US - HIPAA means that the patient has to approve this transfer. The one they cared the most about was any kind of biopsy - they wanted the original slides to do their own pathology. We also sent them imaging but they wanted to do their own imaging anyway. We did most of this legwork ourselves. It took perhaps 2 weeks to get an appointment. In our case they first scheduled a meeting with the surgical oncologist, and after that first appointment we met with the other relevant specialists - radiation and chemo. We also had repeat imaging on the same trip. Then later in that week, all of the doctors met in what they call a tumor board to discuss the case. They decided on a plan that was pretty much the same as our local doctor. However, we decided to continue treatment at the regional cancer center because our treatment plan involved surgery and the surgeons were more experienced with this type of cancer than our local onc.
On the insurance side, this process was no different than seeing our first doctor.
Some cancer centers now offer remote second opinions through a company called Grand Rounds. To me, those appear to be more concierge (Grand Rounds does a lot of the legwork to get all your doctor's medical records), and perhaps even quicker if time is of the essence (our second opinion added perhaps 3 weeks between diagnosis and treatment, Grand Rounds says their process takes two weeks), but doctors don't examine patients directly and most insurance companies don't seem to cover this yet.
posted by muddgirl at 2:04 PM on June 20, 2019
We had a PPO plan which covered the nearest regional cancer center (it was about 3 hours away). We told our local oncologist that we wanted to get a second opinion there, and we asked if he would recommend anyone. He told us which doctor was the expert in our kind of (rare) cancer, and even called them up for us and "referred" us (not completely necessary, but it got us a call back from this doctor's scheduler very quickly). Yes, this conversation felt awkward at the time, but our local doctor was very understanding and not offended at all.
IIRC we had to fill out a form and give it to our doctor to send over the relevant records. I think this is true in all of the US - HIPAA means that the patient has to approve this transfer. The one they cared the most about was any kind of biopsy - they wanted the original slides to do their own pathology. We also sent them imaging but they wanted to do their own imaging anyway. We did most of this legwork ourselves. It took perhaps 2 weeks to get an appointment. In our case they first scheduled a meeting with the surgical oncologist, and after that first appointment we met with the other relevant specialists - radiation and chemo. We also had repeat imaging on the same trip. Then later in that week, all of the doctors met in what they call a tumor board to discuss the case. They decided on a plan that was pretty much the same as our local doctor. However, we decided to continue treatment at the regional cancer center because our treatment plan involved surgery and the surgeons were more experienced with this type of cancer than our local onc.
On the insurance side, this process was no different than seeing our first doctor.
Some cancer centers now offer remote second opinions through a company called Grand Rounds. To me, those appear to be more concierge (Grand Rounds does a lot of the legwork to get all your doctor's medical records), and perhaps even quicker if time is of the essence (our second opinion added perhaps 3 weeks between diagnosis and treatment, Grand Rounds says their process takes two weeks), but doctors don't examine patients directly and most insurance companies don't seem to cover this yet.
posted by muddgirl at 2:04 PM on June 20, 2019
We got a second opinion though Grand Rounds. I was very satisfied with the experience, but it was out of pocket. It let us hear from the top hospital in the country without any travel expenses or stress, and it was indeed as tremendously fast as promised. They worked with our physician to communicate everything relevant to the remote doctor, which I didn't quite anticipate (I thought the medical record people would just process the requests, I guess), but the local doctor didn't have a problem with it at all and was very cooperative. I'd say she was excited about the new concept, honestly. The remote doctor gave their opinion in a written report, including technical stuff that was for our physician to review and help us understand, and then we were allowed one set of follow-up questions. I had the sense that, if we'd wanted to transfer care to the other hospital, we'd have been able to do so more easily at that point than if we'd just called and asked for an appointment.
posted by teremala at 2:43 PM on June 20, 2019 [1 favorite]
posted by teremala at 2:43 PM on June 20, 2019 [1 favorite]
Oncologists are usually particularly empathetic towards their patients, and are generally collaborative in their approach. I think they would welcome a second opinion and are accustomed to it. They refer patients all the time for research protocols, and are devoted to moving cancer treatment forward.
I have no information on your local insurer or care providers, but it is my informed impression that oncologists expect their patients to seek other opinions.
My aunt - in her late 70s but otherwise healthy and on no meds (!) was found to have metastatic uterine sarcoma but was determined to be cared for in her local suburban health system. I, an academic research nurse and my cousin, an academic OB/GYN were horrified. My aunt's oncologist very graciously tolerated our insistence that her case be reviewed by a Johns Hopkins oncologist and pathologist, colleagues of my cousin. The local oncologist agreed to a telephone conversation with the Hopkins oncologist, and the local doctor's plan was endorsed. I can hardly imagine a more potentially uncomfortable situation than relatives insisting that outside stars second-guessing him, but he was very good about it, and very pleased that his academic colleague agreed with his treatment plan. We all, my aunt included, felt more positive moving forward. To this day - she's on her fourth or fifth round of chemo, which temporarily shrinks her tumors - with my aunt's approval he hands me copies of my her scans and office notes when I accompany her to appointment, and I send them on.
posted by citygirl at 3:00 PM on June 20, 2019 [1 favorite]
I have no information on your local insurer or care providers, but it is my informed impression that oncologists expect their patients to seek other opinions.
My aunt - in her late 70s but otherwise healthy and on no meds (!) was found to have metastatic uterine sarcoma but was determined to be cared for in her local suburban health system. I, an academic research nurse and my cousin, an academic OB/GYN were horrified. My aunt's oncologist very graciously tolerated our insistence that her case be reviewed by a Johns Hopkins oncologist and pathologist, colleagues of my cousin. The local oncologist agreed to a telephone conversation with the Hopkins oncologist, and the local doctor's plan was endorsed. I can hardly imagine a more potentially uncomfortable situation than relatives insisting that outside stars second-guessing him, but he was very good about it, and very pleased that his academic colleague agreed with his treatment plan. We all, my aunt included, felt more positive moving forward. To this day - she's on her fourth or fifth round of chemo, which temporarily shrinks her tumors - with my aunt's approval he hands me copies of my her scans and office notes when I accompany her to appointment, and I send them on.
posted by citygirl at 3:00 PM on June 20, 2019 [1 favorite]
I just finished rotating through a nationally famous hospital to which people go for second opinions. Everyone there was very interested in working with the local ("first opinion") team, whether by phone or through exchange of detailed notes. Don't let this aspect of it worry you at all.
posted by 8603 at 3:10 PM on June 20, 2019
posted by 8603 at 3:10 PM on June 20, 2019
Nthing that your current oncologist should be totally fine with you getting a second opinion. It’s literally a life or death situation!
I have been in a similar situation and we got a second opinion from a major cancer center. Insurance (BCBS but in a different state) covered a second opinion, and would have covered a third opinion but only if the first two opinions conflicted. This was in the long version of the plan documents (like I think I had to download a Word doc or something). And a lot of the cancer centers will let you pay out of pocket (under $1000) for a remote second/third/whatever opinion.
In our case the second doctor made the same diagnosis and recommended a very similar course of treatment, so we stuck with the original team. We didn’t talk to the first oncologist before we got the second opinion but she brought it up at our next visit in a very friendly and casual way.
posted by mskyle at 5:50 AM on June 21, 2019
I have been in a similar situation and we got a second opinion from a major cancer center. Insurance (BCBS but in a different state) covered a second opinion, and would have covered a third opinion but only if the first two opinions conflicted. This was in the long version of the plan documents (like I think I had to download a Word doc or something). And a lot of the cancer centers will let you pay out of pocket (under $1000) for a remote second/third/whatever opinion.
In our case the second doctor made the same diagnosis and recommended a very similar course of treatment, so we stuck with the original team. We didn’t talk to the first oncologist before we got the second opinion but she brought it up at our next visit in a very friendly and casual way.
posted by mskyle at 5:50 AM on June 21, 2019
Oh and coming back to add: most of the transfer of records stuff went very smoothly (fill out a release form and it just happens) but I did have to request CDs of imaging (MRIs) and physically bring those to the second center.
posted by mskyle at 6:22 AM on June 21, 2019
posted by mskyle at 6:22 AM on June 21, 2019
This thread is closed to new comments.
For insurance, you will need to call and ask. Most insurance will cover some kind of second opinion, but mine, for instance, is an HMO and will only cover an oncologist in network - so if I want to go to Mayo Clinic, it's on me.
I've seen a naturopath who specializes in blood cancers (I have multiple myeloma). It was very helpful. When I returned from the appointment, I looked up what he recommended, and there was peer-reviewed research for everything he suggested. One thing I've learned is that oncologists are really good for managing drugs, but if you want much else, you'll need to do your own research or go elsewhere. Assuming you're in the US, states vary in how they regulate naturopaths, so it's a buyer beware situation. On the other hand, I saved my life because I didn't believe a cardiologist at a major teaching hospital and paid $500 out of pocket to see a cardiologist with a concierge practice, who after doing blood tests, called me that night to send me to the ER, so it's always buyer beware.
Also, I'm going to throw in my usual recommendation for smartpatients.com, a collection of communities for different health conditions. I can't speak to the community for colon cancer, but the one for multiple myeloma has been a huge help to me.
posted by FencingGal at 1:33 PM on June 20, 2019 [3 favorites]