bad doctors? any one change doctors mid cancer diagnosis?

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Jade645
Jade645 Member Posts: 19
edited January 2015 in DCIS (Ductal Carcinoma In Situ)

I am so frustrated with my mom's experience it is making me crazy.

So her general doctor who all her referrals must go through told her she was being silly for considering plastic surgery at her age... and that she should hurry up and get the surgery so she can start chemo. Um my mom has DCIS and we are hoping that she won't need chemo... all the specialist have told her she probably won't need it. Then when the hospital was calling her doctor for files for a second opinion the doctor called and yelled at my mom because she was feeling harrassed by the other hospital to get things done quicker. My mom wants to dump this doctor, but is worried transitioning to a new primary at this point will slow down the process that already seems slow. It seems every referral the doctor turns in takes 3 weeks.

Her oncologist who gave her the diagnosis basically gave her the diagnosis told her he recommended a unilateral mastectomy, told her he's see her again after the surgery and then left the room when she started crying never to return. He sent the nurse back in.

The first surgeon told her he also recommended a unilateral mastectomy gave her a two minute overview of the procedure and then asked if she had any questions. He also went on a rant about how vain women were to worry about reconstruction.. his job is to save lives not worry about appearances. My mom isn't sure she wants reconstruction, but she wants to know the options ins and outs.

The second surgeon at a different hospital went well lots of information given very personable very comfortable.. but not sure if insurance will approve procedure at this hospital.

Met plastic surgeon who works with the first general surgeon and my mom loved him. She was leaning towards no reconstruction prior now thinks she wants it.. but then when I asked her follow up questions it didn't seem like she had all the information she should have to make a decision.. and now she is thinking with going with the first general surgeon who she didn't like because the plastic surgeon said he was good for this kind of common surgery. (sound like a caveat to me)


I am just venting.. but is everyone else having warm, compassionate experiences? These people might be competent.. but it seems like they have no people skills or bed side manner... and it just doesn't make a hard thing any easier.



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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited January 2015

    Jade, I didn't change doctors, but I did get a second opinion before I chose my doctor so I know it is important to feel confidence in your doctor. Shame on your mother's doctors for treating her this way. I think that you have time to search for a new doctor. Not all doctors are compassionate, but they should not withhold important information about reconstruction options. I also think it is ok to not recommend reconstruction, but it should be for health reasons....not because the doctor thinks women are vain. Run, don't walk from those doctors.

    MsP

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  • angelia50
    angelia50 Member Posts: 381
    edited January 2015

    Its obvious none of these doctors has ever had or had close relatives deal with this. I am 59 and just had my exchange for reconstruction in December. I am certainly not vain, I am overweight and I am well aware of it but I did not want to deal with special bras and special things for the rest of what I hope, is a long life. I have read some horror stories on here about rude and heartless doctors. I go to a breast center and I can truly say, everyone, all my doctors, staff right down to the receptionist, have done everything in their power to make this as good of a situation as it could be. You are already scared to death and you sure don't need somebody else to dump on you. This is also something that will need to be monitored, so she will have to deal with these doctors ongoing, so she needs to find doctors that realize, they are working for her, not her for them.

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited January 2015

    Hello Jade,

    You are SUCH a fine daughter, to help your mom.

    I've changed primary oncologists 3 times since I was diagnosed in 2008. I think change can be good, it doesn't always have to be that the doctor is horrible. A new doctor can have new ideas, new connections to other oncologists who share ideas, and another set of patients with different experiences. (I see doctors in two states, so it's REALLY complicated.)

    Your mom's recent visits though. ... Wow, what the hell??? how insensitive, new doctors needed, start over!!!! Your mom deserves this. She does not deserve to cry uncomforted.

    There is NO RUSH.

    Your mom's timetable is most important, not a doctor's.

    There are many options. Perhaps lumpectomy with fat grafting and not unilateral mastectomy? Over-treatment can be worse than under-treatment.

    Reconstruction doctors/nurses/support staff MUST totally show support to your mom. Her healing depends on trust. This should be a joyful experience. The DCIS will be removed. YAY!!!! Let's celebrate the possibilities!

    Plastic surgeons because of the "creationist" nature of their work, can sometimes have an ego, but they should also have compassion, humor and a huge interest in making your mother feel youthful, lovely and whole.

    I had reconstruction last year, 6 years after my lumpectomy. I have Stage IV breast cancer now.

    I chose a doctor whose office is 6 hours away. The American Cancer Society helped me find a room for me and my husband for less than $25/night. Helpful women on these discussion boards led me there.

    No one in my plastic surgeon's office questioned my needs or desires as selfish or anything negative. The surgery I had to add a size back to my left breast, fat grafting from my tummy and put into my breast, wasn't even available back when I had my lumpectomy. I was thrilled to learn about it. I no longer need a prosthesis, I only need more bikinis. ;-D

    The reconstruction was an uplifting experience for me. I also had lumps under my right arm, skin metastases, taken out.

    The liposuction on my belly hurt but the awesome thing is, I can have the surgery repeated, if the fat doesn't stay in my breast. A lifetime of free lipo!!! Whoopee!!!!

    I DISLIKE hearing about women rushed or bullied -- over breast cancer decisions. Our breasts are wonderful body parts. They deserve VIP treatment, especially when threatened by cancer.

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  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    I am so sorry to hear how your Mother has been treated. I just don't understand how these Doctors can be so unfeeling. I was very fortunate, although I didn't click with the first surgeon, who Dx me and insisted that I should have a lumpectomy and 6 weeks of rads. I found a second surgeon, whom I trust implicitly. He gave me the option of a lumpectomy or a Unilateral Mx, with or without reconstruction. I knew that reconstruction, was not for me and also that a Mx was right for me. I have never looked back and an very happy with my decisions.

    There is no "one size fits all" on this journey and although there may be times when it isn't possible to have exactly what you want, it should be your decision with all the options laid out, for you to make an informed decision. Did you go to the appointments with your Mother as another set of ears? If so, how did you feel about the Doctor?

    It sounds like the general Doctor is not even on the same page as the others, DCIS and Chemo? I have to say, if it were me, I'd be moving to another Doctor, who could read the Dx and could refrain from shouting at your Mother, good grief, that's ridiculous behavior.

    All the best, let us know how your Mother gets on.

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  • Jade645
    Jade645 Member Posts: 19
    edited January 2015

    Thank you everyone for responding to my post.. It really helps just to interact with you ladies who have been through this. I keep encouraging my mom to get on her herself and hear the stories to interact with people, but she is not so comfortable on the internet.

    My mom lives about an 8 hour drive away and I am saving my time off to go down there when she actually has her procedure. My dad does go to all the the appointment with her and my aunt goes to some of the appointments also. .. and I still feel like they are missing something after talking to the doctor, but with three people in the room I think that maybe it is because her doctors are so bad. All three of them sat in the room with the plastic surgeon and it isn't clear to me that any of them understood it was a two step procedure... even though I could tell he was talking about an expander... and this is coming from the one doctor that my mom actually liked and seemed to take the most time describing things.

    My mom's general doctor is the one who made the comment about chemo. She is also the one who yelled at my mom.. I really think she is just an idiot. No one else oncologist included has talked about chemo or anything... besides saying it is very unlikely it will be needed.. I think the general doctor is prone to just say stupid things. This is the doctor my mom wants to rid herself of, but how her insurance works is that everything has to go through this doctor she is like the gateway and she is worried if she has to establish herself with a new doctor this will slow the already slow process more and doesn't want to take that chance.

    She has DCIS grade 3 does anyone know the likelihood of it becoming invasive? Does she need to hurry up and decide? The doctor has refused to put stat on any paper work to hurry any of the referrals through but then makes this comment about my mom needing to hurry. .. again probably she is just an idiot but then my mom gets nervous and is thinking about going with the surgeon she doesn't like because it will be faster ... and in the back of her head she is convinced the cancer is going to bust lose in her body any day. .. or that it already has since she had symptons since 2/14 and didn't get a diagnosis till 11/14

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited January 2015

    well I had DCIS grade 3, 6 1/2 years ago. I did the lumpies then rad and the AL.  All is clear now and hopefully, for long years ahead.

    yeah, my BS initially sent me to a RO center where the dang doc took 3 cell calls while explaining radiation!  I ran from the room yelling I am not doing this.  He yelled at me and said you have to, my response was I do not have to do it with you!  Then I called my BS and asked if I could use a dif hospital for rads and she was fine with it although of course she tried to tell me the first center was good but..

    I ended up using the second hospital for the rads and chose a MO also from the second facility after interviewing both places for the MO

    take time to think on it, does she have any pals in her town who have gone through this all? if she asks, she maybe surprised to find others, good luck to her

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  • Jade645
    Jade645 Member Posts: 19
    edited January 2015

    I have been urging her to try a support group or share the news with her church group. She belongs to a senior group and I am guessing that several of the women in there have been through this experience, but she is not telling people yet.. she doesn't want people talking to her about it all the time (is her fear). My mother in law had almost the same diagnosis 3-4 years ago, but chose no reconstruction.. they have a good although maybe not intimate relationship and my mom won't call her. My mother in law knows as I've called to ask her certain questions and she is happy to talk to my mom but doesn't want to make the phone call to make my mother uncomfortable. I am trying to be patient and understanding, but I truly don't understand her desire to not try to reach out to anyone who would have first hand experience.. to me it seems like hte logical things. I am just collecting peoples experiences as a source of information, comfort, measuring stick etc. It is really helping me.. it has helped me be calmer and more objective about the whole thing.

    My dad has walked into the past two doctors with a list of questions and seem prepared, but still seem to be gaps in information.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015
    Jade, I changed surgeons twice (ended up with one I love) and primary right after diagnosis. I am going to change rad onc as well. The lack of trust was corrosive and the failure to be upfront with me about my treatment would have had very damaging effects on MY health, which, frankly, is all that counts at this point.

    I can't help you with the rest of it but will stress that yes, it is possible and sometimes desirable to change.

    As for courage for treatment at a particular facility, sometimes an MD can successfully request an exception from the insurer. It doesn't hurt to ask.

    Good luck to you and your mom.
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  • angelia50
    angelia50 Member Posts: 381
    edited January 2015

    Jade, everyone deals in a different way. You say you are surprised your mom doesn't want to talk to people. A lady I know, in her late 30's and a RN, is going through this too so I thought oh, thats great, I can talk to her and she has the medical knowledge as well as personal knowledge about how this all feels but not so. She has not read anything about her condition. When I asked if she was invasive or non invasive, she said she didn't know, but she would ask. She was going to have reconstruction but when I would say something about exchange, she asked what that was. So, it has really surprised me that a nurse would not want to know all she could but apparently, she doesn't. She even posted a pic in September with her daughter holding up a sign, cancer free and I'm thinking, you don't know that. She had chemo and I think she really thinks that has ended it for her or just because they dont' see obvious signs, that she is guaranteed its gone. So apparently, some people feel more comfortable without knowing.

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