It's not that I don't trust my MO, but he seems to be quite SOC, and doesn't offer options unless I bring them up. Which I have been doing. I even seem to have a reputation for having good questions. Which I am glad to hear, but frankly I don't feel I'm as well educated as all that 🙄. It could be that most of the rest of his patients just don't ask questions.
I'm currently on ADT vacation and we've talked about what may or may not happen when it's time to stop the vacation.
I feel like this would be a good time for me to ask for a second opinion. Hopefully someone who might be more comfortable speculating on possibilities with me.
But the only second opinions available to me would be within the same medical organization. (Health Partners, in Minnesota, USA). I'm concerned that a second opinion that comes from in-house might not very valuable to be honest. If nothing else, they would be peers within the same organizational setting.
Not ideal IMHO.
In this forum I've often read about people getting second opinions, but it sounds like they're getting those opinions from Big Names and Institution in the advanced prostate cancer world. Is everybody paying massive amounts out of pocket to get these opinions?
At the beginning of my PCa back in 2015 I had asked for a second opinion once before. I had reason to suspect that the cryoablation being recommended was unnecessarily SOC.
I ended up being misinformed about the process of asking for a second opinion, was unable to obtain one, and the months that were wasted cost me the chance at getting a cure. ☹️🤬
Of course that's not an issue right now, but I will admit to having ambivalent feelings about in-house second opinions.
So I guess I should ask a question 🤪
Are you guys who have had second opinions paying out of pocket?
If you had a second opinion that was "in house", have you had any reservations about the quality of that opinion?
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The problem is that your insurance is through an HMO. You have to follow your HMO's rules or pay out of pocket. If one has a PPO plan, outside second opinions are covered.
What kind of Medicare do you have? I have a supplement plan. When my Dx came in, I saw 9 Dr's to pick my local team (Uro, RO and MO). After my 44 IMRT and when I had started my ADT journey, I made an appointment with Dr Ana Aparicio in Houston at MD Anderson to "get on their books" and make sure the treatments were on track. I can now shoot them questions when something comes up.
With my supplement plan, I have paid $0 out of pocket for all of that.
Ah, good point. Back in 2015 my Medicare package might have looked different because it was based on my depression disability. But I don't think my current arrangement is anymore friendly with paying for second opinions. I do have Medicare with Medicaid backup, but it is being handled by Health Partners as an MSHO. As Tall Allen pointed out, it may be my connection with an HMO that is restricting my choices.
It's hard to complain about my current health insurance though, because it covers things so well.
The Medicaid is what they call MA-EPD: medical assistance for employed persons with disability. It basically picks up everything that Medicare doesn't as long as I stay employed within the guidelines. It's quite possibly the best situation our country has to offer me, and I'm very glad for it.
But I will check with the Medicare people just in case. Thanks for the heads up 👍
One, is whether or not you are comfortable with your care team and MO? Well, only you can answer that question, bit for the matter, I believe you already answered that by asking!
Other question is about obtaining a 2nd opinion. I'm not aware that insurance, let alone with cancer, regulates the fact that if you go to a doctor, that you're stuck there with that doctor, that you cannot go to another for the same reason...
So...
Find a Major Cancer Center and one rated in Excellence! One that is accessible to you. It's at the COE's you'll get the best of diagnosis, and care, treatment, access to the best testing and treatments including trials of need be. No offense to local facilities but they cannot compete! Travel of you must, it's worth it. There's a reason people travel from around the world to get to certain hospitals...
Paying out of pocket is also a major consideration sometimes. Financial anxiety is real for cancer patients, those decisions too are patient dependent. What's your health and piece of mind worth? I'm not Rockefeller or a trust fund baby of his, but I had to have a conversation with my care team early on about making the best decision for my cancer as the priority, figuring out timing second, and then leaving me to figure out how to pay for it. Not making decisions on testing or treatment on the ability to pay, that decision was lowest and is lowest on my list of prioritizing decisions. There are so many organizations out there that can help, some irregardless of income/wealth, some depending upon the patient ability to pay.
I had about six "second opinions" back in 2018-2020. Was told many conflicting things about my condition, recommended treatment, etc. I went to other local MOs and ones at Mayo and Moffitt. I finally threw up my hands and stuck with my original MO.
That was on private insurance (Blue Cross, which paid them all) but I've been on Medicare since 2021.
In two weeks I'm going to talk to the one doctor in this area who supposedly does Provenge. My MO knows nothing about it (Provenge), so I have to go down the road. Isn't PCa fun?
At dignosis I asked my urologist for a second opinion. It was a competing urologist in the same city. I assumed, from my ignorance, that the second would support the first. I was WAY wrong. He was blunt and unequivocal about my diagnosis and treatment opinion and moved me in another direction. The good part of it is that since my first and second were different the second man referred me to the best uro he knew, a man at Duke Hospital, and I went to surgery with him. It was a necessary but not sufficient action in my many years of this condition.
Do not assume agreement with doctors. Find the best opinion you can afford within time and cost.
BUT: Be prepared to decide what to do with that information. Will you transfer your care? Will the current doctor accede to the second opinion course of action? Will this mean traveling for treatment?
If I do get a second opinion my hope would be that it is significantly different from the first opinion. That's the kind of insight I would be looking for. My concern about getting an in-house second opinion would be that the doctors have social and institutional connections that muddy the waters medically. I'm not suggesting that the doctors would be doing anything unethical if they agreed with each other, but I'm looking for significantly different viewpoints.
It looks like I may need to go out of pocket with that Cleveland clinic...
I have had many opinions over my ten years with this beast, crossing the US and several countries in Europe, and yes self-paying for many (often immediate payment discounts are offered).
IMO your concerns for social and institutional connections are viable. Additionally, docs and medical practices have various contracts which influence their recommendations. I came to learn SOC is a very broad spectrum of care, from possibly inadequate to the (over the top) best of care.
You were right to be skeptical about cryoablation option. No personal experience with it but I don't know how it can be considered anything but a 'blunt instrument'. It's too bad you don't have better insurance. I switched from Medicare Advantage to Medicare Supplement Plan F after being diagnosed. I might have been lucky to have been able to do that.
Yeah, the cryoablation thing was kind of weird. That was back when I was working with a urologist. He suggested the cryo procedure.
The cryo doc was also in-house of course. And he's been doing the same procedure for ages with a terrific sounding level of success.
Which sounded suspicious to me. What procedure in the treatment of prostate cancer doesn't change over a period of 15 years or so? And maybe his magnificent successes were because he was so heavy-handed with it.
That's when I tried to get a second opinion from Dr Kwan at Mayo.
I had gotten the go-ahead from my insurance people but I had been misinformed. Or at least under informed. In any case mistakes were made and 3 months went by during which the cancer escaped and cryo ablation was no longer an option. And that's when I was assigned to the MO that I have now.
One thing I tell everyone: You have to like your doctor! If you like them you trust them. Another thing I feel strongly about; I have, mostly, female doctors because they are more empathetic.
I think I agree with you on both counts but with a caveat. I have better communication with female medical people because in general I feel less competition in the room.One exception that comes to mind is my RO! When I asked her for clarification I definitely feel put in my place 😄
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