Have you ever asked for a second opinion?

[DeeEast]

And if so, how? Did you contact your insurance company first? Did you ask the doctor him/herself for the referral? How did you tell the first treating doctor that you were going to get a second opinion? I would like to take DS to another hospital in another part of the state to be seen and would like his records copied and sent there, assuming we can get an appointment but am wondering where to start.

[crl]

Kind of. Our insurance did not require referrals so I didn't have to worry about that. Our ped said, allergies. I said, shouldn't we take him to the allergist to confirm? Our ped said, sure, here's who I recommend. (Turned out to be my allergist.) And I called and made the appointment. I did kind of the same thing with getting to a developmental ped. My ped said, I think we should wait. I said, hmm, no. And we made an appointment. Both times the specialist sent a courtesy letter to our regular ped after the appointments.

Catherine

[ged]

I just did this, though my situation was different. I have a high risk pregnancy, so I see both a Ob/Gyn and a peri. I wanted a second opinion on what the peri said, so I called my Ob/Gyn and spoke with the office manager or something and told them I wanted a second opinion. They said fine, and even gave me the name of another group (the office manager did, as she had worked with them a lot at her previous job). They got the paperwork going, and about 4 days later, I heard from the second group. My peri, up to this point, does not know I got a second opinion, but I honestly do not think he would mind.

When I went to the second opinion, they had my records so they knew I wasn't necessarily looking for a new peri. I was upfront with everything. They gave me their opinion...and said I could call if there was anything else they could do for me. I felt no pressure from them at all.

I am so glad I got the second opinion. Kinda a hassle, but so worth it, in my opinion.

Good Luck!


ETA: the second opinion doc does send a letter to the referring physican. at least in my case

Re: insurance, it was no issue since we have a PPO and both groups accepted it.

[DeeEast]

Thanks. This would be a second opinion of another specialist. DS is already seeing a pediatric hematologist/oncologist. I would like him to be seen by another specialist in the same field but at another hospital. We were "referred" to the E.R. of the children's hospital where DS is being treated now by our regular pediatrician's office but the regular ped. office is not actively involved with his treatment for this so-far undiagnosed problem.

[pb&j]

Yes, I have, a couple of times.

Once, I did have a good relationship with the first MD, and the situation was such that I was encouraged to get a second opinion - ie, diagnosis was pretty clear, but the course of action was not.

Another time, I did not have as good of a relationship with the MD. I doubted his diagnosis, which is what led me to the next MD. I did not inform the first doc of my intentions, and did not return to him for this issue. I knew that I wouldn't go back to the first doc, and didn't really care to engage in any sort of conversation with him about the whys of my decision to get another opinion. It was kind of like when you leave your hairdresser for a new one, lol.

In both cases, I did not need any kind of referral for insurance to cover the second doc. YMMV on that. You can request your records from the Dr's office at any time. I've done that a few times, even when I had no intention of leaving my doc.

As far as the second opinion doc sending a letter to your original doc, b/c of HIPPA, they can't do that. They can't share info with a 3rd party unless you consent.

[niccig]

I did. I had to have thyroid surgery and the surgeon the endocrinologist referred me to, didn't take ANY insurance. He's the best in LA for this surgery, and I did like him, but I needed to have it covered. The endocrinologist gave me other referrals, but I didn't like those surgeons. I started looking on my own, and found a list of thyroid surgeons nationwide.

We have PPO insurance, so we can see whoever we wanted. I got the records and made an appointment for the surgeons on the list, that were in LA. In talking with one of the other surgeons, I realised my thyroid issue was more complicated than I was led to believe and I wasn't on the right amount of medication. The surgeon followed the most recent guidelines of the American Association of Endocrinology, and my endocrinologist used older guidelines. I swapped to the surgeon and he recommended an endocrinologist he works with. They also ran some tests that had never been run - it was a blood test, so not difficult but they thought I was presenting with a certain thyroid autoimmune disorder. Those tests were negative for me. But, later on my friend went to see them, and like me no other Dr. had tested for that disorder. Her test was positive, and it answers a lot of questions about how her thyroid condition needs to be treated.

I did have complications with the surgery, but my case was quite complicated. Maybe the "best" guy in LA would have done it differently, but we couldn't afford it, and maybe the complications would still have happened - basically I should have had the operation 3 years earlier. I did recover from the complications and I did have great follow up from the surgeon and hospital staff. I still see the new endocrinologist and he's great at working WITH me.

Anyway, a long way of saying - get a a 2nd opinion. It doesn't hurt, it will cost you a little more, but you could get a lot more information or even just information that takes away any doubts you have about your current treatment.

ETA. I ended up at USC hospital. My experience there has been great - both Drs. knew all the latest research and they are experts in thryoid disorders. Even though my first Dr. was an endocrinologist, I don't think he saw anywhere near the number of thyroid patients as the USC surgeon/endocrinologist. And that's what you want, someone that just deals with your situation. I do recommend university hospitals for specialist staff.

[niccig]

As far as the second opinion doc sending a letter to your original doc, b/c of HIPPA, they can't do that. They can't share info with a 3rd party unless you consent.

Yes this. When I got a 2nd opinion, the surgeon asked if he could send a letter to the original dr. He also asked if he could send on to my internist.

[niccig]

Thanks. This would be a second opinion of another specialist. DS is already seeing a pediatric hematologist/oncologist. I would like him to be seen by another specialist in the same field but at another hospital.

Maybe ask here. I though sste's DH was an oncologist - maybe he would know of a specialist in your area. Or the other Dr.s on the board might give suggestions on where to look to find a specialist.

[mytwosons]

I was in a HMO and had been sent to an ENT who recommended surgery. While I agreed the surgery was needed, I wanted a surgeon with more experience. So, I emailed my PCP to explain the situation, and she gave me a referral to the surgeon I had picked out. It was very easy to do, once I got over my own discomfort about asking.

Good luck and please know P&PT continue to come your way.

[truly scrumptious]

DEFINITELY get a second opinion. Here's why I'm saying so:
- I work for a remote second opinion company and I know a lot about this. (We work like an insurance company and do second opinions for people who have our policies.)
- For a serious illness, you want to be SURE that the treatment plan is best for the specifics of your DS's case. Especially something like hem/onc where the slightest little change can make a huge difference to how the plan is handled. Before you spend time and money going down one route, you want to be sure it is the most likely to be successful (don't want to risk things getting worse while you try something that doesn't work.)
- For something like hem/onc, consider not just asking your hem/onc or your regular ped for a referral to another person. Do some research and look up some top hospitals that specialize in the condition in question. A LOT of hospitals will do remote opinions, which means you send them your medical info and they send back a second opinion. (You most likely won't have to travel, and you'll be getting input from a top hospital.)
- We do a lot of research on how many medical errors second opinions help to prevent and it is shocking (not because doctors aren't good, but because there is SO MUCH information out there, they can't stay on top of it all.) If Harvard Medical School just started a breakthrough new treatment that could help someone in your situation wouldn't you want to know about it?

Sorry to go on and on, but it is something I feel very strongly about. It is your DS's health and you can never be too careful. If we can spend weeks comparing different car seats for the best and safest one for us, we should do the same for medical treatments.

PM me if you'd like more info (even just guidance on which hospitals might be good for your DS's condition.) Also check out the U.S. News and World Report's top hospital rankings to see the best hospitals in different specialties.

HTH. Good luck!

[egoldber]

For something like hem/onc, consider not just asking your hem/onc or your regular ped for a referral to another person. Do some research and look up some top hospitals that specialize in the condition in question.

I was thinking this as well. In your case I would be researching the best hospital in the country and flying there if need be, at least for a consultation and diagnosis.

[alexsmommy]

I agree with not necessarily asking those already involved, but looking up the best specialists in your area for the specific diagnoses you are waiting to hear on. If you have a PPO, call them and schedule your own appointment. If you have an HMO, see if any of them are in network, then ask your ped to make a referral. If the HMO says the person you want to see is in network, but not in your group, call the HMO, ask for a supervisor, explain why you want a second opinion and ask for them to give you the referral. Ask that the hard copy of the referral be sent to you and keep MULTIPLE copies of it so if they try to deny payment later you have a paper trail.
So sorry you must do this. I hope you have positive news soon.

[hillview]

Yes get a second opinion. When DS needed brain surgery we got 2 OPPOSING opinions. After a LOT of independent research and follow up appointments to discuss we made a decision which was 100% against the other hospital's opinion (this was the #1 rated hospital in Boston for children/brain surgery). We were very fortunate to have a fantastic outcome.

We were at Mass General Hospital and Boston Children's Hospital 2 very good places. We'd have flown to another hospital if we needed to.

For minor things I think it matters less.
/hillary

[ThreeofUs]

Yep. The half of my family that isn't in law is in medicine, so it's standard practice for us to go looking for 2nd and 3rd opinions, frequently in different parts of the country. Doctors have opinions and failings and getting just one opinion is like sitting in one chair. You don't know what you don't know, and you have no idea of the other options and how they might suit you.

Find out from your insurance how to get a second opinion. Then call or ask around for the best place with plenty of experience. Then GO - that's the hard part, sometimes, just fighting the inertia.


...researching the best hospital in the country and flying there if need be, at least for a consultation and diagnosis.

Beth is right!

You can do it! Best of luck!

[jenmcadams]

I was thinking this as well. In your case I would be researching the best hospital in the country and flying there if need be, at least for a consultation and diagnosis.

My SIL was diagnosed with Hodgkins Lymphoma a few years ago, but the initial diagnosis from her local hospital was pretty far off and their treatment plan would not have worked. She lives in El Paso and my FIL did a ton of research (he lives in MN) and determined that the best doctors to confirm the diagnosis/develop a treatment plan were at MD Anderson in Houston. She ended up doing all of her chemo locally in El Paso, but flew to Houston pretty often that first year. She did end up staying in Houston for the month she received her radiation b/c her doctors wanted to monitor it and be involved daily. She's been in remission for 8 years now and still goes back to Houston once a year for her annual check-up. Our whole family feels like going to "the" hospital for her condition probably made the difference for her.

Good luck and hugs to you...I haven't posted much on your threads, but I've been reading all of your posts and thinking of you and your son.

[truly scrumptious]

my FIL did a ton of research (he lives in MN) and determined that the best doctors to confirm the diagnosis/develop a treatment plan were at MD Anderson in Houston. She ended up doing all of her chemo locally in El Paso, but flew to Houston pretty often that first year. She did end up staying in Houston for the month she received her radiation b/c her doctors wanted to monitor it and be involved daily. She's been in remission for 8 years now and still goes back to Houston once a year for her annual check-up. Our whole family feels like going to "the" hospital for her condition probably made the difference for her.

Yes, this. The key is identifying the correct treatment plan early on. The treatment itself (like chemo) etc. can be handled pretty much anywhere (even close to home). We work with SO MANY international patients who get remote second opinions and then handle treatment in their home country (for cost and convenience reasons.) Their local doctor stays in touch with the specialist here and handles their treatment.

[jenfromnj]

Yep. The half of my family that isn't in law is in medicine, so it's standard practice for us to go looking for 2nd and 3rd opinions, frequently in different parts of the country. Doctors have opinions and failings and getting just one opinion is like sitting in one chair. You don't know what you don't know, and you have no idea of the other options and how they might suit you.

Find out from your insurance how to get a second opinion. Then call or ask around for the best place with plenty of experience. Then GO - that's the hard part, sometimes, just fighting the inertia.



Beth is right!

You can do it! Best of luck!

I agree with all of this!!! There is really nothing to lose by getting a second opinion, especially where a serious health issue is involved. If the second doc says something different, it's good to explore the options. If s/he says the same thing as your original doc, then it might give you peace of mind with the diagnosis and treatment options presented.

In terms of who you should see for a second opinion, that largely depends on your area and the specific problem. If you're in the NYC area, we have an excellent hem/onc practice which is consistently top rated and has worked wonders for DH's serious health issues and seriously saved his life when other docs had failed us (2 members of the practice see peds patients).

[mecawa]

We did this when DD2 was in the ICU for 2 months with no answers/diagnosis. We started out at our local town hospital (she was born there) a week later they transported her into one of the bigger Boston hospitals she was there for two months, we were unhappy with the way things were going, we contacted our local ped (even though she at that point had nothing to do with her care etc.) she had us sign her out (is it called AMA or something) and then she readmitted her through the emergency dept of the other big hospital (if your doc has privliages at the hospital you want to be transferred to, you don't have to do that part, mine didn't). As long as the child is stable you can do it that way. We ended up at a third hospital but that was after getting the second opinion and a major blood test back (we had to fly out to that one) that's where it got tricky because we needed contact our insurance and make sure they would cover an out of state and region hospital stay,etc. even with referrals from the area docs she had seen.

In regards to how to tell the doctor treating him now, he should understand why you want a second opinion, with something like this. In my case it was easy because we were so thoroughly disgusted with the one we were dealing with(there was issues with quality of care and attention in our case as well).

Good luck, I hope you are able to find a place/doctor you are comfortable with.

[Sillygirl]

Most doctors won't be offended if you say you're seeking a second opinion. I'd rather my patient feel confident in my plan of care than go along keeping any misgivings to themselves. I offer to help patients find the best place to go, and write a summary letter to make things easier for the other doctor. Many times the patient will be returning to my care so I appreciate being able to speak to the other specialist directly after they've done their assesment.

If one of my kids had a serious health problem, I would only accept a major academic medical center, no matter how inconvenient.

[LBW]

I would start by researching specialists in the conditions they suspect your son of having. Look at the editorial boards of medical journals, staff at research hospitals, etc. Talk to people and get referrals first hand. Talk to your ped, too. He/she might have some suggestions.

I'd talk to my insurance co about my options - get lists of the specialists in your network, and check to see what your converage is outside of network in case you need to travel to see someone else.

In the meantime, I'd get in touch with the staff at the current specialist's office. Ask them to make a full copy of his records for you. You shouldn't have to tell them why, but if they ask, you can tell them that you are considering taking him for a second opinion.

Good luck and (((hugs))).

[mamicka]

I have no advice but I just wanted to send you some :grouphug:. I've been following your posts & I've been thinking of you, just haven't posted yet.
:grouphug::grouphug::grouphug:

[megs4413]

yes, many times. this is VERY common in hematology/oncology. You need to find the RIGHT specialist for your son's particular issue, if possible. when DH had cancer, we sought a second opinion on treatment options and traveled to see doc's in another state who literally WROTE the book on his kind of cancer and they saved us. I was nervous about telling our oncologist that we were going to go out there, but when I did he said (and i quote) "I think that's a good idea." He wasn't offended at all and was very supportive.

I have done it over and over again with DS' treatment teams. We've interviewed 4 teams. I had to break up with two of them and it wasn't an issue either time. You are your son's best ally and you have to advocate for him at all costs. Don't worry about their feelings or reactions, just get your DS the right care. You won't be sorry!

[erosenst]

Long story, but to shorten it I asked for a second opinion, by a separate lab, on a biopsy path report that was a little unclear. The dr, who I had just met but liked, agreed it would be a good idea in this case and arranged for it to be done. I also asked for copies of the original and second report, which he happily provided. I have a PPO, and there were no insurance issues on having it done.

I will be seeing the dr periodically for a long time - and knew I had found one I could work with.

(As it turned out, the second path report confirmed the first - but it made some decisions much easier being more sure of what we were dealing with.)

I totally agree with PP's on finding the best doctor/hospital in the country, and flying there for a second opinion in this case. I've always had a PPO, rather than HMO, for exactly that reason. I want the ability to find the best care in the country if anyone in my family or I am critically in need.

Best of luck to you -

Emily

[DeeEast]

Thanks. From the research that I've done, the #1 pediatric oncology department in the U.S. is Childen's Hospital of Philadelphia. We happen to live in Pennsylvania so this is a very good thing. Its a matter of a few hours drive (and we have an offer from one of DH's colleague's to stay at his house if we want DS to be seen there) or a very short plane ride.

But I agree with previous posters that, if warranted, we would fly DS to the opposite end of the country if we needed to get the very best care. Now we just have to make sure we follow the protocols with our insurance (PPO). My hesitation is that I don't know how to broach the subject with our current hematologist. From what I have read in on-line in articles, he is known throughout the country for his pioneering of a new kind of "kinder, gentler" bone marrow transplant.

I don't want to piss him off or get on his wrong side and can't yet figure out the best wording of how to get across the message that we really like him, but with such a serious differential diagonsis: TEC vs. myelodysplastic syndrome, we want a second opinion and copies of all of the records and test results so far.

[blisstwins]

Your doctor is a professional and has been in the situation before. Just tell him that as a mother with such a potentially serious case you feel the need to do due diligence and make sure there is never anything you wish you had done. He will understand and be supportive if he is professional.

[hardysmom]

I have been treated for Breast Cancer for the last 2 years. I have had a zillion 2nd opinions, some local, some distant.

2nd opinions are always covered, but you can run into network issues with insurance limiting where you can get the opinions. It is good to have a local recommendation validated or, if the oncologists disagree, to get more info so yo are comfortable.

I live in Tulsa. I had surgery and treatment recommendations from Mass General in Boston. Chemo and rads were done at home, with my local and Boston teams speaking frequently. Besides surgery, I went to Boston 2-3 times for consultations, but most stuff could be handled over the phone, email, etc.

Besides insurance, depending on your income level, travel and expenses during travel are deductible. Most big centers also have discounts at hotels, or have rooms for families on-campus.

Get to a major Cancer Center. Philadelphia is great. You are lucky! Almost all of them are considered in-network with most plans because while the level of care is higher, they are usually academic facilities which can be (ironically) less expensive.

They will not only have the most up-to-date resources, but have systems worked out for working with your team of doctors at home. Oncologists are VERY used to patients getting 2nd opinions. Many like working with the major centers because it is professionally challenging for them.

In oncology, most treatment protocols are VERY standardized. There can be some geographic variance (MD Anderson vs Sloan Kettering) but for the most part, they all agree on "Standards of Care" at the annual ASCO meeting and go from there. Sometimes it takes several years for the most recent Standards to "trickle down" from the academic centers to the general oncologists who are not academic, but see most patients.

If your local onc is resistant to working with a major cancer center, you need a new oncologist. Period. With cancer, there isn't room for getting sub-par or dated care because you don't want to hurt the doctors feelings or because his/her ego is too inflexible.

I've also fired a couple of doctors. It is remarkably liberating. You don't have to "explain" anything to the doctor, just sign release forms at the reception desk and cancel your next appointment. Viola!

FIRST step, find out your options from your insurance company. My Aetna PPO allowed me to go anywhere in the country "in-network," but this isn't always the case. Often, if you leave your immediate area, you are "out of network." That said, the billing office at the specialists offices can often work this out if given the chance. The billing people at major centers are often as efficient as the doctors.

SECOND step, tell doctor #1 (you can just speak with the receptionist) you want to get a 2nd and go in and sign the release forms. They will ABSOLUTELY share the info, you just have to give permission. Tell them where you want them sent/faxed.

That is pretty much it.

If you have a pathology report, it should be included automatically. Usually, if you go to a major center, they may want a "slide" from the tumor or blood work from which the path report was written, You can get that as well. The facilities Fed Ex this stuff to each other.

So, besides the obvious reasons to get a 2nd, I thought it was important to "get on the books" with a major, academic physician JUST IN CASE things didn't go so well. I wanted to be an existing patient so that, if I needed to, I could get in if I had mets at some later date.

All this stuff is so overwhelming. I am so sorry you are having to figure it out.

Stephanie

[DeeEast]

Thanks for all of the information. I think this is exactly what I need. We are at a large cancer center/academic medical center now. I am happy with our care so far. I am just trying to make sure we are doing everything right that we can do and it can't hurt to get a second opinion. At least I think I will call Philly on Monday to see if and when we can get in at all.

[mecawa]

Thanks for all of the information. I think this is exactly what I need. We are at a large cancer center/academic medical center now. I am happy with our care so far. I am just trying to make sure we are doing everything right that we can do and it can't hurt to get a second opinion. At least I think I will call Philly on Monday to see if and when we can get in at all.

Childrens Hospital of Philadelphia is the best!!!!! That's where we flew out to (I may have told you that) for our daughter. I didn't have any dealings with the oncology department, but the departments we dealt with were better than excellent. He will be with the best of the best there. Good luck!!!!

Just editing to say if there is anything you want to know about our experience there (I'm not from the area, I'm from Boston, but we spent a month there with our DD and then another week there in August/September, so we know the hospital pretty well) feel free to PM me.