Frustrated and disappointed

Hippmark
Hippmark Member Posts: 93
edited December 2021 in IDC (Invasive Ductal Carcinoma)

I had my super appointment this past Wednesday. Thanks to this community and other research, I went to the appointment with a notebook and loaded with questions for each Doctor. I was given 45 minutes with each Doctor. The most questions I had were for the Oncologist. I think I read on this Board someone saying "choose your Oncologist carefully." The Surgeon was first and I liked him a lot. Explained everything, answered questions, etc.

The Oncologist was next. She came highly recommended by my PCP and I read reviews about her on various sites. She rushed in, did not introduce herself, would not answer any questions I had because I had not had surgery or the Oncotype score back yet (although I had the Biopsy full report and all the receptors, profiles to date), etc. Within the first 30 seconds, I knew I was just a number to her. I shut down and was trying to hold back tears while she examined me. The entire time with her was 15 minutes. I was very upset by her lack of communication and knew she was not right for me!She even gave me a pamplet on AI Aromisin (not the other two), so she had already decided which AI drug I would be on. I was interested in Femara, but at least wanted to ask!

The Radiation Oncologist answered all my questions even though I had not had surgery yet and he did not have my Oncotype score.

I kind of knew going into the appointment that I would need to switch Oncologists, at least for chemo treatment, because I would like to try Diginicap and they don't offer that there. But I thought I could at least get that Oncologist recommendation after surgery and then move on.

I left the office in tears because I did not get my questions answered and knew I had to start again. The stress is already overwhelming when you are starting out. She did nothng to relieve that. My PCP is in that network of Doctors and doesn't know anyone outside of her group. I don't know anyone to ask as this Group is the biggest game in town. I do not know friends, etc, locally to ask. I am sort of left with Dr. Google. The other large hospital group does not take my insurance. But there is a smaller, independant cancer Group with 3 Doctors I can try. The most important aspect to me is a Doctor that will let me be involved in my treatment. Not dictate my treatment with no questions asked or "I got this, no need for you to be involved."

Nevertheless, I had my MRI yesterday and my Lumpectomy is scheduled for late in the day on December 23rd. I have a Colonscopy scheduled for the 31st, so it will be a busy "Holiday!"

Thank you for letting me share this. I don't know how many others have had this type of experience, but it is nice to know I can come here to vent.




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Comments

  • tntnsd
    tntnsd Member Posts: 137
    edited December 2021

    So sorry that you had not got your questions answered by your oncologist. You should not be left crying when leaving appointments because of such. Trust your feelings as if you don’t feel you are listened now, it is unlikely that your concern would be looked at properly in the future.

    I recalled that my PCP doctor recommended me my team of doctors to treat my BC, she told me I need to talk to them and choose them for myself especially oncologist since oncologist would be the one I needed to see the most for the next several years to monitor BC.

    Is there a website where you can search for oncologist on your networks? Ask around - family or friends if they know anyone. Go for another hospital for second opinion, team of doctors if your insurance allows it. It’s your right to find the doctor who you would with your care, and able to voice your concerns.

    Best wishes


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  • ThreeTree
    ThreeTree Member Posts: 709
    edited December 2021

    I used to find office staff, technicians, and nurses, especially, very helpful in making recommendations for doctors. Some are reluctant to make referrals these days, but if you can get them to say anything, they might be your best bet. Who would they go to if they were in your situation? I did find one front desk person recently who made me a list of providers that many patients at that particular breast center said they liked, and that was helpful. I've also been in the ER and mentioned the names of certain doctors and sometimes you will get a nurse or technician who will offer that that's who they go to, sent their family member to, etc. Sometimes they will add things like how "humane" this or that one might be or how all the staff really like them. See if you can "work" some of the "lower level" people if you can. They all know these doctors and have opinions, but just won't always say without some prodding and questioning. Good luck. Your ordeal with that oncologist sounds awful.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2021

    I don't think you need to limit yourself to one group. Why can't it be mix & match? My surgeon knew I was talking to two different oncologists. I ended up with a surgeon at one hospital group, an medical oncologist at another hospital group and a radiation oncologist at MD Anderson. My MO was the key & gave me several recommendations. For example - he encouraged me to meet with several RO's before making the decision and told me to consider the the commute every day for rads. He also kept up the communication between oncology, surgery, plastic surgery & radiation. When I was uncomfortable with the expanders - the MO even gave me another plastics name to get a second opinion.

    I agree with Three Tree. Talk to nurses or other docs. But by all means find an oncologist who listens & takes the time to answer questions.

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  • Hippmark
    Hippmark Member Posts: 93
    edited December 2021

    Other major group does not accept my Insurance. Not as many others use the smaller cancer group I mentioned as they are not the big games in town. I will be calling them Monday anyway. They do take my insurance. My post was a little more about needing to get that off my chest as I was so stunned by her lack of communication as she came so highly recommended. I am not in as large a town as Houston that has as much to offer. I agree. The MO is the key. But I have to find an MO in just one other network group. And so far, nadda recs. Plus, the Dignicap is only offered at one office of this cancer group (the smaller one) so I only have 3 Oncologists to choose from there. Not as simple as it sounds or I would just move on more easily.

    But thank you for the suggestions! Always welcomed!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2021

    Hey Hippmark,

    Doctors can have bad days too. My RO was highly recommended by the surgical team I really liked, but my first meeting with him was terrible. They happened to send me a survey after that appointment and I filled it out honestly. He actually called me to apologize and totally acknowledged the issues and was much better going forward. I feel like it also took me a while to build the relationship with my MO, although there was at least good rapport from the start.

    Depending on how you're feeling and your other options, it may be worth it to try again with that highly recommended MO. If so, I would wait until you had the results she wanted (which is reasonable actually, I think, to wait to have a full conversation until you have full information) but also communicate to the office that the first visit felt very rushed, you didn't feel comfortable asking your questions and could you be scheduled for a less busy time of day or a longer appointment. (I also wouldn't assume she gave you that brochure because that's what she already decided, she may have just had it on hand). It's also true that some really good doctors are not necessarily the best in their interpersonal skills, and some doctors who are really fantastic at making patients feel comfortable and heard are also ignorant and/or quacky.

    (I say that not to gaslight or pressure you, but just because it sounds like you're not optimistic about other local options. It's possible it's still a workable medical relationship)


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  • Hippmark
    Hippmark Member Posts: 93
    edited December 2021

    Thank you for your reply! I understand she could have had a rushed day, but I was given 45 minutes set aside. The other Doctors honored that time. I also understand the reality of waiting for certain results before you ask certain questions. But my goodness, I have cancer. I should have been allowed to ask whatever I wanted within my alloted time.

    But, and this is the big but, I had read on some other reviews that she often seems to be in a rush and doesn't make time for questions or at least many. So, it wasn't just my impression. As mentioned, I am certain she is an excellent Doctor. She is just not right for me. I also cannot use her initially (or for many months) anyway because they do not offer Dignicap in that Group. So why start and then switch immediately? I listen to my gut and my gut tells me to move on. It's usually 95% accurate!

    I agree that some Doctors are very compassionate but may not offer the best treatment or lack of knowledge. Others, great treatment, no compassion. Someone in the middle would be nice. Sort of like Goldilocks! This Doctor is too soft, this one too...you know. The other 3 Doctors at the other Center all have different reviews. All three have "Goldilocks" reviews. One, too soft, one to hard, etc. Ha ha! What is a gal to do?


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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2021

    I'm sorry that appointment felt so rushed and cold. But to your comment "But my goodness, I have cancer!" Well, she's an oncologist. ALL her patients have cancer. And right now, there isn't anything she can do for you until the surgery and pathology are done. But she has many patients that are at that point, and beyond, and she may have needed to get back to one who needed her expertise more that day.

    I've had two surgeries in my life that were scheduled for one hour each. Both wound up being four hours due to complications. It taught me to never assume anything if a doctor is behind schedule, or seems rushed or frazzled or off in some way. Even non-surgical doctors can have issues. I knew one oncologist who would go sit with his worst-case patients and just hold their hand while they slept. So, maybe give this doctor a second chance?

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited December 2021

    Salamandra - Did the medical group you use share your survey answers with the doctor? Was is it with your permission, or is that their standard policy? I'm curious because I get survey requests after some of my appointments and I'm not sure that I would always want my comments shared with the provider in question. I have always assumed that survey results and comments always go into some broader collective feedback system, even for a designated provider. I assumed they would get a "summary" of results and comments that people have made, not ones from individual patients.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2021

    Sorry to see that Hipmark has deleted all of her posts here. I think she got some helpful responses. Oh well... Good luck Hipmark if you check back.

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