really upset and lost

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guineamom
guineamom Member Posts: 62
edited June 2014 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

I've vented in a few topics on this board about my journey with my surgeon office, thought I am moving on till I received a call today. So upset that I cannot even concentrate on work.

To repeat my story. I was diagnosed with DCIS early Apr via excisional biopsy. Because I am BRCA+, BS strongly recommeded mastectomy.  The excisional biopsy did not result in a clean margin so minimum I need another surgery, either lumpectomy or mastectomy. I was agreeable to mastectomy but because the hospital my BS is affiliated with does not do the reconstruction I wanted, I had to change a BS. Called the 2nd BS's office 1st week of May to have them schedule the surgery. From then on the nightmare began. I had difficulty getting to the surgery scheduler. Most of the times I called, I got the answering machine. I left a few messages but she never called back. On times when I managed to speak to her (twice), she told me she did not have a date yet. On 15 Jun, she called and left a message on my answering machine, she said she was working on scheduling the surgery and had questions for me. It was the first time she ever called me. I tried returning the call numerous times over a week and a half, every time hitting her answering machine. Left her another 3 messages, she never called back. At that point, I gave up, I decided to move on, give myself some time to think things over on what my next step should be and not constantly try to push for the surgery. In fact, I decided not to do the surgery till my brain is clear.

All was nice and well till today when I received a phone call from my plastic surgeon's office telling me they want to see me because of my upcoming surgery date. Wow, I'll be under the knife and I'm the last one to know, and I know it from the plastic surgeon's office. From then on, I couldn't even remember how many curse words that went through my mind. Mentally I'm no longer prepared for such a surgery. Really lost on what to do...I dont think I can handle having to deal with the BS's office again and having to go through the whole nightmare again.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2012

    guineamom, so sorry for what you're going through!  My first impression is that the dealings with your "new" BS's office sound really unacceptable, from getting an answer machine to not having your calls promptly returned.  That does not sound like a very caring, patient-friendly office; although, I'd give them the benefit of the doubt that if the problem was one employee, maybe she's been replaced by now?  If not, I think you can do much better!

    How far ahead is your scheduled surgery date?  If you like your PS and he's possibly hard to schedule, then perhaps it would be worth another call to the BS's office, to see if anything there has changed.  But, honestly, from the way you've described how they've treated you so far, I'd be very leery of proceeding with them.  

    Another thought... at a large, university teaching hospital you will find BSs & PSs under one roof (or on one campus), and scheduling and everything else usually runs much smoother than trying to piece them together yourself.  I know from experience, and although it was a pain switching BSs midstream (explained in my bio), it turned out to be a blessing in disguise.    Deanna

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  • Laura5133388
    Laura5133388 Member Posts: 577
    edited June 2012

    I would find a new one.

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  • guineamom
    guineamom Member Posts: 62
    edited June 2012

    My 2nd BS, the one that is giving me the nightmare, is the Medical Director of the Breast Care Center in one of the better hospital in this area. I was so upset today that I called back the surgery scheduler today to ask what on earth is happening, and like expected, I got the answering machine again. In mid of leaving a voice message, she called me back. First time ever that I got a call back from her! I have the feeling she is screening her calls. From the time I got the call from the PS's office till the time I called the surgery scheduler was like 2 hours and lady from the PS office and the surgery scheduler already spoken to each other. Imagine I had such a hard time reaching the surgery scheduler yet the lady from the PS's office had no problem getting her. What is the possibility of that?

    Surgery date I am given is 18 Jul. I have no special preference for the PS but I know he is one of the better ones in this area.

    I do like the BS here as she made me feel real comfortable. However, with the experience with the BS office, I have no confidence that I will not be treated like dirt by the office. I'm thinking of going to Hopkins but that is like 2 hours drive each way. And who knows, maybe I'll be treated like dirt by them too... I just lost confidence in all doctors after close to 2 months of frustration.

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  • camillegal
    camillegal Member Posts: 16,882
    edited June 2012

    2 months, Oh my stars I can't imagine waiting around and not getting phone calls back u poor thing---Hope the rest goes well.

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  • CMartin
    CMartin Member Posts: 316
    edited June 2012

    Being comfortable with both surgeons has been invaluable for me. Not sure you want to drive two hours but could potentially find another closer to home. There are doctors out there who really care for your best interest.

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  • guineamom
    guineamom Member Posts: 62
    edited June 2012

    To Deanna's point, I did go to a teaching hospital. Though the BS and PS are not under the same roof, they work together pretty frequently.

    At this moment, I'd say there is no doctors who care for my best interest. They treat me like another "piece of meat", nothing personal, just business as usual. Sorry for being so skeptical but I no longer trust anyone. The BS and PS I've picked came highly recommended, a number of ladies on this board mentioned they had good experiences with the BS. Not sure where I went wrong.

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited June 2012

    Your frustration is with the administrative staff from what I read, not the medical professionals. Have you written a complaint or sought to escalate your frustration with a supervisor or manager?



    The medical professionals need to know when the staff side sucks. I think often they don't. If you really don't trust the medical team, you should reconsider your choice even if it means travel.



    With something as important as this is I probably would have gotten irritated enough to drive to the office and make a scene with the worthless clerk on the phone.

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  • guineamom
    guineamom Member Posts: 62
    edited June 2012

    I did write to the doctor's office 2 days ago, addressing the letter to the doctor, letting her know my experience with her office. In the letter, I stated just the facts, keeping the issue as objective as possibe. I thought the letter will give me a closure to this whole experience and let me move on. I was happily doing my job when the phone call came, after which I cannot even concentrate on my work. Now I just want to curl up somewhere and have a good cry.

    Not sure why the call is affecting me this much... 

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  • guineamom
    guineamom Member Posts: 62
    edited July 2012

    Just a quick update. The BS called me back yesterday because of the letter I wrote to her. She explained that they are understaffed because of the state the health care industry is in. Wow, so I guess all patients at her practice are treated the way I was treated. I wonder if that applies to all surgeons in US, if I change a BS, I will have to tolerate another whole round of torture. If it is, I might as well kill myself because I don't think I can deal with this another time. I may not have to try too hard as who knows if my cancer has spread after all these waiting.

    Sorry for being so negative, I'm down in the dumps now, need some way to dig myself out of this state... 

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  • Racy
    Racy Member Posts: 2,651
    edited July 2012

    Guineamom, hopefully some ladies near you can give you the name of another BS who provides attentive patient care.



    I had a similar experience with an oncologist who plainly has too many patients, even though he is reputed to be very good.



    I got a referral to another onc at the same practice who has a more balanced life and manageable patient load. I am very happy with the personal care provided by my current onc.

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  • Alirena
    Alirena Member Posts: 82
    edited July 2012

    Guineamom,  I'm sending you a private message.

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  • Shayne
    Shayne Member Posts: 1,500
    edited July 2012

    hey . . . not sure what is happening now with your docs......but wanted to say if you drive 2hrs, American Cancer Society offers free hotels for treatment.  I had to drive almost 2hrs for surgery/treatment and got put up in nice hotel, and at HOPE LODGE.  They have a website and are avail 24/7 - great people to talk to , vent to or just get info.  

    I hope you find a doc you can trust and feel good about.  It was very important to me to trust the care I was in, one less thing to worry about.  (((hugs))) to you on this journey..... 

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