• Courage to Get Second Opinion

    Asked by legaljen1969 on Wednesday, January 29, 2020

    Courage to Get Second Opinion

    I am feeling so stupid. I am 50 years old. Much too old to give a XXX what others think, but have always been a people pleaser and "follower." I have a care team I like and trust, but everyone in my family insists I get a second opinion due to sudden trajectory from DCIS to Stage 1 invasive cancer (at least that's what coordinating nurse is saying is the stage change. Doctor has been less encouraging and I have to go with what I was hearing from her) Where do I even begin to figure out how to get a second opinion? Who do I go to? Do I take my records? Does the second opinion doctor request them?

    28 Answers from the Community

    28 answers
    • po18guy's Avatar
      po18guy

      Sorry to hear this. If you are not at a National Cancer Institute designated comprehensive cancer center, I strongly encourage you to consult at one, consider treatment there, and even think about entering a clinical trial. I had the good fortune to do so and am alive because of it. Find the nearest center here:
      https://www.cancer.gov/research/nci-role/cancer-centers/find
      They have all of the information you need regarding a second opinion and/or treatment.

      19 days ago
    • cllinda's Avatar
      cllinda

      I had people tell me to get a second opinion, too. My doctor would have given me the name of who to see at a major Chicago hospital if I wanted to peruse this. But I trusted my team and didn't bother. I did some research on line about my diagnosis and it basically said I was on the right path. I just felt satisfied with what they said it was and what the procedures would be and I just went along with it. And I'm a seven year survivor.

      19 days ago
    • po18guy's Avatar
      po18guy

      If your case is at all difficult or if response is not as hoped for, I would head directly to an NCI center.

      In any event, it remains your life to live, to fight for, or to lose.

      19 days ago
    • BoiseB's Avatar
      BoiseB

      I have a friend who got a second opinion. The second Dr. not only gave a second opinion but communicated with her original Dr. and they worked out a treatment plan that was very successful. Both Dr. learned and neither was offended. I got a second opinion when I got that 4 to 9 months to live prognosis that was 10 years ago. I have had two Dr.s ask for second opinions for my neurological problems

      19 days ago
    • legaljen1969's Avatar
      legaljen1969

      Po18guy. Just got sidelined by the disconcerting results on Monday. I don't think the surgeon was expecting "invasive" results either. She's waiting for one last piece of information from pathology on the current sample to come in while we are waiting for the MRI and PET scan to be scheduled. My mass is right below 1cm- the threshold where they would automatically test for HER2. Since it's close, they are going to go ahead and test that receptor while we are getting other things done.

      Tuesday is my regularly scheduled post-surgical check. Depending on what else we know by then, it may be a treatment round table.
      I do live relatively close to a NCI designated facility. My local treatment team is affiliated with the NCI facility, so there is a pretty good chance I'm moving up the food chain anyhow.
      Will keep posted

      19 days ago
    • po18guy's Avatar
      po18guy

      Please do. The NCI centers employ the best and brightest, have cutting edge data and conduct clinical trials. Entering a clinical trial in 2009 is the reason that I am still here. It worked for 4.5 years and when the cancer defeated it, other treatments had entered the market and new research data was available.

      I am all about hope. Back in 2009, I was in a tiny group that had a 3 month average survival. Another relapse, two additional cancers and a stem cell transplant later, I am still here and delighted to be anywhere. So, keep on it!

      18 days ago
    • PaulineJ's Avatar
      PaulineJ

      I'm with po18guy,but it seems like you may have good doctors and such on this.
      I'm not a good one to suggest to get a second opinion.I've had (one bad )experiences with that and also heard the doctors stick together.And one place is supposingly one of the best hospitals(Mass.General) in the country.This is when I was in my 40's(long time ago).LOL!

      18 days ago
    • Yeahyeah's Avatar
      Yeahyeah

      As the patient/customer, in my opinion you should always secure a second opinion. We do it for work on our house, our car, our sidewalk, why not for our body. Do it.

      18 days ago
    • legaljen1969's Avatar
      legaljen1969

      I am doing my "homework" so to speak, working toward getting copies of medical records and such in case I decide to let someone take a second look.
      For those of you who have had great success (in other words, you are still here), here are some of my questions. Maybe it's not a "one size fits all" answer. Am I supposed to get my records and take them to another doctor? Would another doctor get "more" information if they requested the records directly? How do I make sure I get everything?
      I almost hate to ask because I have definitely requested full medical records for patients in legal situations (I am a legal assistant). It just feels different when I am requesting it for myself, you know? It's like I know what to do for someone else, but feel like I am lost when it comes to doing for myself.
      I just feel like I have lost my mind.

      18 days ago
    • Yeahyeah's Avatar
      Yeahyeah

      Take all of your data with you to the second opinion. You want it all in your hands. Bring someone with you, because they will hear things you do not and can take notes.

      18 days ago
    • legaljen1969's Avatar
      legaljen1969

      Yeahyeah, I think my post-surgical wound care appointment will bring questions and answers on Tuesday. If this thing is invading quickly and spreading, I don't want to spend time coordinating second opinions. I want the stuff gone. I think the answers I get at that appointment may determine the timeline and how to pursue second opinion "opinions."
      So my only main answer to the "why not for our body?" is this...
      Typically if we are having work done on our house, our car or our sidewalk- it is something we have time to work on- to get some extra bids and contemplate things. Often our insurance can provide us with temporary lodging or a rental car while we work out the solution. Many people have alternate transportation options or lodging options available to them that they can pay for even on their own- a taxi, an Uber, a bus, bicycle, etc. Housing- you could stay with a friend, get a hotel room, get a temporary rental.
      So far as I know, at this point even with the advanced technologies and treatment options, there is no possibility of having a temporary body to reside in or use while I am exploring my options.
      If I use a home analogy, lets say I know I need a new roof. I have noticed shingles falling off and I found a little dampness on the floor in my garage. So I call my roofer. I have a good history with my roofer and he is well respected and has taken good care of me so far. So he tells me he will have his guys take a closer look, we may be dealing with just a quick repair or we may be dealing with a much larger issue and I could have a rainstorm in my bedroom if I don't get it fixed.
      If he recommends a repair, and I want a second opinion I have time to look around and get some options. if he shows me there is a big hole and I might wake up tomorrow with a rainstorm in my bedroom, I am probably going to say "get right to work" and not mess around with getting a second opinion.
      Right now, I don't know if I have a few shingles missing or I have a rainstorm. That's what I need to find out from my doctor.
      I don't mean to make light of it, but that's the only analogy I have right now that makes sense to me. As we do not yet have alternate bodies in which we can hang out while we explore options, I just have to find out if I have time to check things out or if I have a five alarm fire.

      18 days ago
    • PaulineJ's Avatar
      PaulineJ

      I forgot to say that doctors don't go against another doctor.Mass General was one of the places a doctor that heard me talking to the secretary told me if (St.Marguerite's) hospital told me, ( If you need an hysterectomy you go back there and get the hystorectomy,I wouldn't even give you a second opinion )

      18 days ago
    • judithj's Avatar
      judithj

      Please take time for a deep breath and listen. You have had excellent advice - Po18guy and others - you are in a place with affiliation to a NCI facility, all good things.
      You do not have to stop the train for a second opinion, make it PART of your plan. A second opinion was your initial question. Go ahead with the scheduled follow-ups and schedule a second opinion as well - I think part of your anxiety is the fact that the possibility of cancer spread caught you suddenly. Follow up tests and planning take time, you can obtain a second opinion during that time and even after a treatment plan has been discussed/implemented.
      You sound like you have a good team, a second opinion is usually not a wild departure from your initial one. However, it can provide you with confirmation (and confidence) of your team's plan or - information on a newer form of approach, which is shared with tour team.
      Additionally, NCI centers often have internal links with hospitals and clinics and can obtain (with your permission) your pertinent records through those links.
      Everyone here has been through similar chaos and we are all rooting for you!

      18 days ago
    • fiddler's Avatar
      fiddler

      legaljen1969 - doctors are used to second opinions, so you won't be shocking him/her if you get enough courage to seek a second opinion. It'll be comforting. I got one because I wanted to stop infusions early. My doctor wasn't even the slightest bit upset.

      18 days ago
    • fiddler's Avatar
      fiddler

      legaljen1969 - I just read your second post. I believe the doctor can access your data through the computer, and all you have to do is sign releases. It surprised me.

      I moved to another state after treatment and had a mammogram, but didn't trust anyone. I called the original radiologist and asked her if she would take a look. I still say she saved my life by calling me back to say, "I think it's a false negative." It was TNBC, no time to waste on that one. I asked her to take a look at what they're saying, and she did. No questions - she was able to access all my records online. Everything turned out ok, btw.

      So don't gather all the info - when you make the appt ask if they can access everything online.

      18 days ago
    • Bug's Avatar
      Bug

      I agree with fiddler - ask the second doctor’s office what the process is. I got a second opinion and the second doctor’s office said that they would request my records from the first doctor’s office - and they did.

      18 days ago
    • andreacha's Avatar
      andreacha

      legaljen1969 -- I've had my current Oncologist since 2013. I just don't feel comfortable with his care any longer. I'm rushed in and out each time. Our protocol is that you see the Oncologist every 4th visit. The other times you see the NP. His business is growing constantly but there has been no additional staff added. He did some genetic testing on me a couple of years ago. The results show that I have an autoimmune disease, Hemochromatosis. Iron overload. About every 3 months he orders blood work specifically for that. I called his office to find out why I am having these tests weekly along with my other bloodwork. He said that it's once every 3 months and I had to correct him. I told him to look in the computer at all the results each week. Long story short, he hasn't been looking at my blood work each week or he would have seen the repetition of the Iron testing. As it turns out he wrote the order incorrectly and sent it to the lab. They showed it to me only because he blamed them. And, he hasn't discussed the Hemochromatosis with me for a year and a half. If I ask a question it seems to irk him. Maybe it really doesn't, but that's the message I get. I have made an appointment with another Oncologist within the same hospital group but in another city, He can see all of my records in the computer. I'm looking for a little peace of mind. I'm told that his reputation is excellent and that he is constantly keeping up with the latest research being done. We are in a rural area so I am unable to go to an NCI center. The doctor knows it's for a second opinion and he is ok with that. His oncology NP I've known previously and is a 7 yr ovarian survivor. I realize that there's a good chance that I will return to my current oncologist but will feel better discussing my case with another. Best of luck to you in what ever you decide to do.

      18 days ago
    • gpgirl70's Avatar
      gpgirl70

      I think it’s great to get a second opinion. I had aggressive stage IIIc breast cancer with 16 of 25 lymph nodes positive. You will get a lot of information at your post op appointment. They’ll have pathology reports etc. I met with my oncologist soon after my surgical follow-up. I felt a connection to my female surgeon and oncologist so I did not seek a second opinion. I looked at standard of care treatment and the plan my oncologist outlined followed that protocol so I felt good about not seeking a second opinion. I am coming up on my 5 year post diagnosis so I feel good about my treatment. I have lingering issues from treatment as it was harsh for me, but at least no recurrence. I was extremely agitated, anxious panicky after my initial diagnosis so I feel where you are coming from, but remember you caught it early and your outlook is excellent! Hugs to you ❤️

      18 days ago
    • Rustysmom's Avatar
      Rustysmom

      legaljen1969, please don't confuse invasive with aggressive. And, it sounds like at this point, you don't know what type you are dealing with. But, for me, while mine was invasive, it was not aggressive. I had time to make decisions, and get a second opinion, because, while it was important to get treatment and surgery started, it was not an emergency. I had to pull my emotions out of the equation, and take the necessary time to make the right decisions for my circumstance. I know that's a hard thing to do when you hear a cancer diagnosis and only want to have it gone.

      18 days ago
    • legaljen1969's Avatar
      legaljen1969

      GPgirl70- What sources did you use to find your "standard of care treatment"? I feel like I am on the right track. Yes, I have some "nerves" right now, but its more from my family insisting I get a second opinion than my actually wanting one. Family says I am not asking enough questions and I am too trusting.
      I am hoping to get a lot of good information at the post-op. My husband has met my surgeon. The rest of my family has not. I think once my mother meets her, she will feel better. I don't really understand why my mother is so generally distrustful of doctors. I have asked her and she just says "They don't know everything. You have to tell them."
      I don't know, I figure they went to school for this stuff and they see it all the time so they probably do more than I know. They are being paid a ton of money to know more than I do. If they needed MY services, they would be paying me for what "I" know.
      Anyhow, I'm fine in "wait and see" mode until Tuesday.

      18 days ago
    • legaljen1969's Avatar
      legaljen1969

      Rustysmom, thank you so much for that wisdom. I think when people hear invasive, they think "aggressive." So good to hear they are not necessarily synonymous.

      18 days ago
    • meyati's Avatar
      meyati

      If you can, take your records with you to make sure they all are there-not lost. I just picked up my records, and they asked me several times if I really needed records from the ER and the Urgent care. Yes I DO. This is about the 12th different doctor consult since May.

      Call a different clinic? I didn't trust the oncology clinic I was sent to. For me it was precipitous -lucky-a miracle- because the doctor of the 3rd opinion found and solicited me. for an experimental radiation treatment that worked. Beyond that, I don't know.

      18 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      All "invasive" means is that it's broken out of the duct into the adjacent breast tissue. It is also histologically different from DCIS--sometimes DCIS mutates into IDC, sometimes it doesn't. IDC can be "indolent" (slow, gare 1 or 2) just as DCIS can be "aggressive" (Grade 3). And it is not at all unusual for a tumor pre-surgically biopsied as DCIS to be found by the path lab to actually be IDC or include some IDC after it's been removed by either lumpectomy or mastectomy--just as some IDC tumors can contain "associated DCIS" cells as well. If both DCIS & IDC are found, the invasive diagnosis is the one that controls.

      18 days ago
    • gpgirl70's Avatar
      gpgirl70

      legaljen1969 I looked at breastcancer.org and read several books - Susan Love’s breast cancer book, a breast cancer book put out by Mayo Clinic, and a book called Silver Linings. There was a consensus that I would have surgery, chemo and radiation. Of course I have control over what I choose to do but felt it was best to do standard treatment. My only complex decision was lumpectomy vs mastectomy. I didn’t have a reason for a second opinion because all sources recommended the same treatment. I did call Cancer Treatment Centers of America but they did not take my insurance. In talking with the counselor, it sounded like my treatment there would have been the same except they offer more services - nutrition, wellness, meditation, etc. But it turned out my cancer center had some of those types of services as well.

      18 days ago
    • Bug's Avatar
      Bug

      BTW, legaljen, you have *no* reason to feel stupid.

      18 days ago
    • Judytjab's Avatar
      Judytjab

      I would advise a second opinion especially for piece of mind. I did and decided to go with that second opinion doctor who was at an NCI center. The NCI center told me what records they would need and I brought them. So happy I did and I also had stage 1 IDC. Once I received a treatment plan, I felt less anxiety. Big (hugs) to you. You can do this. Keep us informed.

      17 days ago
    • legaljen1969's Avatar
      legaljen1969

      PET scan and MRI are now scheduled for February 19. Doctor doesn't seem too alarmed that it's a couple of weeks out. She's been really good about moving things up if she thinks they need to be expedited so if she's not worried about expediting, I am not worried about it either.

      17 days ago
    • Carool's Avatar
      Carool

      legaljen, many breast cancers are not fast-growing. Mine was 1.7cm and my breast surgeon thought I could wait a month to get the lumpectomy.

      After one breast surgeon diagnosed me, I wanted to go to MSKCC for a second opinion. Did so, loved the breast surgeon who saw me there, and stayed with her. And MSK was doing the sentinel node biopsy, which the first surgeon/hospital wasn’t doing at the time (almost 21 years ago now). Had I stayed with that first surgeon and hospital, I’d have had many lymph nodes removed. At MSK, the sentinel node was negative, so I had only two nodes removed (two, because one other node felt firm, and turned out to also be benign). I’m forever grateful that I had that second opinion.

      12 days ago

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