Second opinion for treatment...how?

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Wigging2000
Wigging2000 Member Posts: 295
edited November 2018 in Just Diagnosed

Hello all

Diagnosed just about 2 weeks ago and in the waiting game right now. Since I’m waiting, I’ve had some time to ponder getting a second opinion (even though I don’t technically have a clear first opinion) on treatment.

For those of you who have done this, how did you go about it? Did you get a referral or did you start calling places? Would love to hear from others’ wisdom. Thank you!!

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  • hapa
    hapa Member Posts: 920
    edited November 2018

    I just went online and clicked on "request for appointment" at three different cancer centers and filled out the online forms. Two of them got back to me and scheduled me in for consultations in a timely manner. The third place was slow to respond to my request, and by the time they called me back to make an appointment for a consultation, I had already started treatment.

    You don't need a referral at any of the top cancer centers, and generally if you tell them you have a positive biopsy result they will get you in ASAP.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Thank you! I called and now have an appointment with a cancer team at a large hospital on Thursday. I was pretty shocked to get in so quickly. Wow...something about this process was easy

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    Make sure your insurance doesn't have referral restrictions. Some plans require going through your primary care doctor.

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  • hapa
    hapa Member Posts: 920
    edited November 2018

    Wigging - I'm assuming they got your insurance information and have verified that they are an in network provider? I can't imagine a large hospital not doing this but yes, you need to make sure you don't wind up with an enormous bill. One of the places I went to accidentally had me in their system as "self pay" and I got a bill for $26,000 for three days of consultations and tests.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    thanks! I've been to this hospital for other reasons so I'm good with insurance! Very helpful though...it would be horrible to get a surprise bill like that

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    Glad your insurance covers this. My insurance paid for me to go outside network for a second opinion because I wanted my second opinion from UCSF. It took two tries. Its always worth asking.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    I have four appointments scheduled on Thursday (they even got me in with plastic surgeon!)...wish me luck and send good thoughts for answers!!

    Thank you for your help and helping to get me started with the second opinion process.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Wow, that was so fast!

    I've been inspired by this thread and I think I'm going to look for a second opinion too, trying to figure out what my insurance will cover.

    Are considering/being recommended mastectomy? I'm wondering why the plastic surgeon. My tumor is similar to yours I think, yours probably even smaller. I had a lumpectomy and no one every mentioned plastic surgery to me.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Salamandra-long story but, I'm waiting on genetics tests (BRCA, etc.). Original recommendation was lumpectomy pending genetics, if I am positive then would consider bmx. However...since then my MRI showed 3 more small “suspicious masses" in the same breast, which has led me to more seriously consider bmx even if genetics are negative. Have been encountering a few communication issues with current doctor, so haven't been able to ask questions about MRI findings. My original tumor is approximated at 1.8 cm from mammo/ultrasound.

    I was also shocked at how quickly they have gotten me in. I am very anxious to get to this appointment. I need a plan!

    I am looking at the second opinion as more information to have in my decision making process...surgery and beyond that.


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  • star2017
    star2017 Member Posts: 827
    edited November 2018

    I just contacted the other university hospital cancer center nearby. Told about my diagnosis and went from there. I didn’t need a referral but maybe that depends on insurance.



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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited November 2018

    I'd recommend going to an NCI designated cancer center. They are research centers, and tend to have better patient outcomes.

    See: https://www.cancer.gov/research/nci-role/cancer-centers/find

    Hopefully there is one in your area that takes your insurance. I usually just call, and tell them I've already been diagnosed and am seeking a second opinion. Be persistent to get to the Dr you want to see. Hope that helps! Best wishes to you.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Thank you! It looks like I can go to anywhere that takes my insurance.

    I'm in NYC, and I'm at Sloan Kettering so far. From the list, I'm pretty sure that NYU and Mount Sinai take my insurance and Columbia doesn't. But I'll double check. Maybe I'll make a new thread and see if anyone has experience with those directly.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Good luck with your second opinion search, Salamandra!

    I am so anxious to get this appointment done tomorrow and figure out my plan.

    Buttonsmachine, myfirst opinion (which I am actually still waiting on technicallly due to some poor communication) was not from an NCI cancer center, but my appointments tomorrow are at one.


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Thank you!

    Honestly I am kind of nervous about getting all the records from the first hospital. I know it shouldn't but it feels like a confrontational question to ask. My brother is coming with me to my appointments on Fridays (first meetings with medical and radiation oncologist) and I'm going to get him to ask about it. So silly to be wimpy about the little things!

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Salamandra- I was nervous about that too but usually you are talking to medical records people and they are very used to these types of requests! Be prepared for them to demand that you fill out releases...in person or with a copy of a photo ID faxed to them.

    Another thing I learned that may or may not apply to you...make sure you contact each doctor’s office too, if they weren’t directly employed by the hospital. I had a hospital and 3 doctors to call. Good luck with your appointments!


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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Wanted to update and thank all who responded with advice. Second opinion day proved to be very worthwhile. Unfortunately they have found some new areas of concern, but I have 100 percent certainty that I am now in the right hands. Your advice helped to guide me to the correct people, I believe.

    Thankful,

    Wigging

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited November 2018

    So glad to hear you're in good hands. Please keep us posted. I hope the new areas of concern can be dealt with easily. Hugs.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Thank you, buttonsmachine!

    I tentatively have bmx scheduled for 2 weeks from now with the second opinion team. Need to have MRI guided biopsy on the right side next week to rule out need for sentinel node biopsy on that side, as these doctors saw something on MRI that first team did not see. Several new areas of concern on left side as well...the decision for bmx seemed incredibly clear to me suddenly. Unfortunately, my first team never actually gave me a full opinion due to horrible communication, but as I said...I’m in the right place now and feel very confident in that statement. Again, I am thankful for this simple post and the thoughtful responses!


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  • Utopria
    Utopria Member Posts: 204
    edited November 2018

    wow! This just goes to show, how important a second opinion is! Good luck Wigging with everything

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  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    Wigging2000....so happy you got a second opinion at a university based teaching hospital. As Ive said multiple times this is so important! Just want to tell you that there are a lot of false positives on MRIs even though they are the best screening tool for dense breasts. Good luck and keep us posted.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Some doctors don't seem to appreciate that some patients need to understand the why behind their recommendations. It's not enough that they may be correct.

    For me, I have heard too many stories and myself too often had the experience of doctors not fully listening or engaging with a case, leading to worse outcomes down the road.

    From the outside, it's not really possibly to tell the difference between a poorly communicating doctor giving excellent treatment and one giving sloppy treatment. And even an excellent doctor can have bad days where they slip up reading a chart or whatever. That's human and totally fair. But the stakes are high enough for patients that it's also fair of us to ask them to make sure they can be really clear with us

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  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited November 2018

    For what it's worth, my MRI found two areas of "suspicion" aside from the lump we all knew was there. Turned out to be a cyst diagnosed by ultrasound, and density diagnosed by MRI biopsy.

    Oh, and get a Valium for the MRI biopsy. Laying face down in a machine, perfectly still with needles involved made me hanging up the phone. I was ready to just chop them off rather than have THAT done to me. Once they found out there was just the original lump, I had a lumpectomy. Easy peasy on that part so I was glad I did the MRI biopsy. But only with Valium. And I hate meds!

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  • WC3
    WC3 Member Posts: 1,540
    edited November 2018

    Wigging2000:

    Most places I just called and set it up myself.

    But I have a PPO so didn't need authorization.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    Well said, Salamandra! I've always felt that second opinions were good for my head. I needed to hear the info twice - even if it was the same thing.

    It can be awkward asking one doctor about seeing another. Right from the start I asked the first BS about a second opinion. I said I had read that it was a good idea to get a second opinion. She was fine with it - never missed a beat. She recommended a BS at Hopkins as one of the best.

    The whole cancer mess can seem like such an urgent thing, but it's important to choose your providers and plan of care for the best outcome and the most piece of mind.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    I have a life saving story for getting a second opinion. A friend’s medical team gave her the all clear but an oncologist on the team said she wanted another look because something looked suspicious and she wanted to be sure. Thank God she did. My friend ended up having a MX with chemo and radiation for ILC.

    Just goes to show you no doctor is infallible and while we all understand that it’s our lives we are talking about. Better to be safe...

    Diane

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