unhappy with oncologist... hmmmm...

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Charz
Charz Member Posts: 48
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Sorry for the rant, but i am just not too happy with my oncologist. wondering if anyone has felt similar...

I had my 6 month follow up with my oncologist, who is the top of the program at the top hospital where i am being treated (im not gonna say which one cuz i don't want it showing up on the internet somewhere, but it is a top nci). Anyway, this is the second time I was seeing him. Well, he is the head of the program and i am just not too happy with him or the program for that matter. Besides the fact that I had to wait 3 hours (!!!!) to see him (missing my own work/wasting my own time), he treated me like my case is really nothing too special and basically that it was an utter waste of his time. I understand that to him, i am an easy peasy just take tamoxifen case, but i waited 6 months and 3 extra hours and he acted like i shouldn't have any questions or worries. He sort of answered my questions, but it was like pulling teeth and he didnt try to hide the fact that my questions were boring and unecessary to him. His answers also don't feel too heart felt making me feel like i have to see a second opinion elsewhere just to get my questions answered. He was even slouching on the wall like he couldnt stand up and his breast exam was literally a one second exam.

Anyway, I am unhappy with him and his lack of enthusiasm or care for my case or my worries. As I understand it anybody with invasive cancer can have a recurrence and i wish my questions would be taken seriously. Its not like he is not being PAID ($500!) to answer my questions. I did have a low oncotype, but I still have legitimate fears about recurrence and I want to do everything i can to prevent future breast cancer. I get the sense that he doesnt want to overtreat, but i am just curious how they can make a determination like that. If i land up having a recurrence it is going to feel like i did not do enough or even consider other preventative options.

Anyway, for one, I've been having ovarian cysts monitored and mentioned these to him and he had the nerve to tell me that I was making a $13,000 cure into a $40,000 cure. He basically didnt see a reason why i should be having these monitored and kept asking me why i was doing it??? i see a gyno like every other woman and this is what she does for me! I was like, where the hell is he coming up with these numbers and then it occured to me that with mastectomy and reconstruction it might come to like $40,000 vs. if i had just had a lumpectomy and radiation. I didn't need a Bilateral mastectomy but wanted to avoid radiation and quite honestly, i don't have too much faith in the medical community to catch breast cancer. I did not want to take a chance that my breast cancer would not be caught a second time because of my very dense breasts.

Anyway, he also scoffed at my other questions too such as ovarian suppression (i am pre menopausal and was wondering if I could add this) and my question concerning family history. He told me to "go waste the genetecists time". Go waste someone else's time when i just waited for 3 hours AND he canceled my actual appt. the week before and had me come in a week later!? Also, I don't like the fact that he is bringing up money in the first place. He said that if I was paying out of my own pocket, I would probably refuse all these tests (ultrasounds and genetic tests). Well, Im not paying out of my own pocket and if I want to have a test done or whatever, why the heck should i not do it? Also, other people just like me with cases just like mine are getting ovarian suppression, oophorectomy, zometa, etc and I don't understand why i am not. At least, I think it is my right to ask about these things, but he doesn't even want to hear it. 

Maybe he was just tired because he had such a back-up in patients, but i just feel like the care i have been getting has been pretty lousy from this top hospital. it is like a mill and none of the doctors seem to want to give me the time of day. They are all the top and I guess i should be thankful to have them, but am i just supposed to sit there not asking anything and just trust everything will work out? It is making recovering from this shit very hard because I just feel like no one gives a damn about my case and my family and children need to know that i am doing everything to take care of this. Right now, we don't feel like we are being taken care of or that anyone cares at all. I understand that for me tamoxifen is the right defense, but other women have all these other treatments and survive for years and years. I just want to do as much as I can to prevent. Do other people in my situation go into their doctors and not ask questions?? I don't really get it. What is the point of seeing an oncologist if there is no follow-up.  I also can't switch doctors because the hospital where I am being treated does not allow it and i would have to switch hospitals and this really is considered one of the very top hospitals for cancer in the country. They told me he was the best of the best, but i just am not feeling it.

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited July 2013

    Wow, that is awful. My MO does not have the best "bedside manner" shall we say, but at least answers my questions. You have every right to expect that! If I were you I would be on the phone with my insurance company right now telling them you want a different doctor, who else in the area is covered under your plan? Change hospitals if need be, whatever it takes, but that kind of treatment is just unacceptable!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2013

    Charz, the hospital may be considered "top-notch" but the way you are being treated is anything but. An onc who questions why a woman on tamox is following up on ovarian cysts is, to put it mildly, careless (and I'm being nice here). I agree, it's time to change if you're this uncomfortable.

    Best of luck.

    Leah

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2013

    Charz- to me the bedside manner is almost as important as how "good" a doctor is. After all this person will be your go to person for at least 5 years. It is unreal that you have to take his lack of interest when you are paying him? A lot...what's wrong with that picture? My BS is also one of the best but his bedside manner at times leaves a lot to be desired. He is no charm school dropout but he has made comments that I didnt appreciate. Fortunately his staff is awesome and starting with my next mammogram I will be seeing one of them. I think in his defense he is trying to be funny but failing at it miserably. My ONC is another story. I like her. She works for one of the best cancer clinics in town but rest assured if I had issues with her I would switch yesterday. So sometimes it isnt just about the "best" and I am sure there are other good doctors where you live. Of all the doctors you see or will be seeing your ONC is the most important - to me. BTW I had an appt with a cardiologist once who acted a lot like your doctor...he spent 5 minutes with me 3 of which was on his cell phone. He received a fax from my GP with my records and armed with that declared I was high risk for heart issues. I asked him how he deduced that from the fax and he said my brother. My brother died suddenly a few years before that and a full autopsy was never done because he was an organ donor. My GP didnt even know my brother so he had no clue about the cause of death. They will never be sure but this clown used it to try to get me to take the stress test...didnt happen. Good luck. diane

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2013

    I agree with everyone else has said. I don't care how "top notch" this doctor or center is. The way you are being treated by him is bottom of the barrel, IMO. My first mo was the head of the oncology dept. at my center. A brilliant man, no doubt, but very dismissive of my questions and concerns. My rads onc really listened to my concerns, without betraying his colleague, and set up an appointment with an mo he thought would suit me better. What a difference! Although she is the medical expert, I really feel that we are on a team and, ultimately, I'm the team leader. We all deserve this as patients and as human beings.

    Caryn

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  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited July 2013

    You need emotional support as well!! I haven't met my onc yet - he's the only one at this hospital, and he has a similar reputation. My surgeon told me that if I couldn't handle him, to let her know and she would try to get me one somewhere else. It's important!

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  • bevin
    bevin Member Posts: 1,902
    edited July 2013

    Hello  Charz, You've been given good advice. I'd chime in that the MO  works for you, you pay his salary. Go find someone else worth your money. Interview one or two and ensure you're happy with the office staff, typical wait time and the MO. You'll be seeing them for a long time so it's good to ensure you feel cared for and watched over. You are important and if you don't feel that way at this office I'd leave and find another. MO's are a dime a dozen. There are many good ones out there. Its your life and your health. Take charge. Good luck!!!

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited August 2013

    Charz- I was 52 when diagnosed & not yet menopausal. My MO was against ovarian suppression for me. I travelled to another MO 2hrs away & she also said NO to ovarian suppression. My original MO was better than the 2nd, so I've stuck with him. There is one clinic where I live & there are 5 MOs affiliated. I had to pick one up front & was told I couldn't change. So, my plan was to just have him write my Tamoxifen Rx for 5 years. There were times when I wondered if I really had cancer. I seemed like such a low priority.

    At first,he didn't seem to be concerned about my SEs from the Tamoxifen(dizziness, vision changes........) Today when I saw him, he seemed to be concerned about everything. I showed him this hard boney bump on my scapula. I noticed it almost 5years ago around the same time lymph nodes became apparent in my armpit. I started to wonder if maybe it was a bone met & maybe I was stage IV from the get go(not stage II). He asked me about my neurological symptoms & suggested I see a neurologist. He ordered an Xray of my scapula, which didn't show anything alarming but suggested see an orthopedic surgeon. He called me back within a couple of hours with xray results.

    I dread my MO appts. I go every 6 months & was going to ask to go to yearly(until today's developments). I just don't have it in me to travel to appts &do the required "shopping around" to find a different one. When they tell us we can't switch doctors within a clinic, I take that to mean that the doctors are expected to "work things out" with us. SO, I don't disagree with what's said above by others but sometimes there are limitations(geographical, financial/insurance, tolerance, time & just wanting our lifes back). I realize that with "my" numbers, I will most likely die of something other than BC. But it's still cancer & concerns me more than my doctor. Or so it seems.

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited August 2013

    Hi, Charz.  Ditch the dope.  He's obviously not the MO for you, and possibly not for anyone.  I find it hard to believe that your hospital really will not allow you to change.  Try calling the head of medicine, or maybe your breast surgeon, explaining that he is just not a good fit, but you would like to continue treatment at that hospital.  Chances are the hospital would like to retain you as a patient, and will make an exception.

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