Help, Need Advice -- Non-Responsive Doc

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Rosettastone
Rosettastone Member Posts: 10
edited December 2014 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

hello, all.  I must warn you i am feeling so low I can't even think straight, but i'm hoping i can manage to frame my question.  what is really getting me down is how the #1 cancer hosp in the world treats its pts, among them myself.  I had uni mastectomy one month ago, followed the next day by surgery to repair a big hematoma.  I was left with a big patch of necrosis on my chest which has to heal before i can go on to my next tx, chemo (then hormones & rad).  I am now being seen weekly by a plastuc surgeon.

Before the surgery, the breast surgeon asked me if i preferred to get my surg path report results over the phone or to come to the office.  I said i'll come in. In the meantime he called me to say he got the results and the good thing was that there was (still) only 1 positice node.  Anyway, i went in to see the surgeon a week after surgery as scheduled, but he said not another word about the path reportr -- just handed me a copy to take home.  Then he said, "do you have an onc in mind"? I said "no", but i would look into it.  He then looked at a list and said he was setting me up with a certain onc who happens to be the least experienced in the whole dept.  he also said he would brainstorm w/my social worker about picking the right person.  (I know from her he never did this.)

What has me so aggravated is that this doc does not return my calls & acts as if i don't exist.  The thing is, in three mos i have left 3 msgs.  The first time he called back leaving a msg that didnt respond to the question.  Last week Wed i called again and was funnelled through some people til i got to a nurse.  I told herbi needed to know whether i could proceed with chemo given the infection i have, and also requested clarification on a few things in the path report.  I also pointed out that it definitely contained a mistake.    The sr nurse said she didn't know the answers and the Doc would call back the next day.  Well, no call rec'd.  Same thing repeated the next day.  Still no call.

The WORST thing is that somebody recommended an experienced onc at this hosp that i should try to see.  But it turns out i cant do that (or see any other senior onc) unless this unresponsive doc makes the request for me.  So you see, i am screwed.

Now, i have heard that this august ca hosp with the #1 us news report card often treats people like sh-t  but what do you do if you happen to be the sh-t?  I can change hosps but this would cause other problems.  I need all my energy to fight the ca, but this whole business has dragged my mood down to the toilet.  How do they get away with this?  I keep on thinking i must've done something wrong but i know that's nonsense.

Thanks.

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Comments

  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2014

    First of all, you did nothing wrong, so stop that kind of thinking. Secondly, every hospital I know do has a Patients Bill of Rights AND a Patient Advocate so I would start by looking this information up, familiarizing yourself with it and then make an appointment to meet with that person. They are there to advocate for you. I'm sure your hospital has more than one if they're as large and renown as you say. Otherwise, I'd schedule an appointment with the Social Worker and explain what you've been going through and see how they can help. 

    This treatment is deplorable and frankly, I can't believe this is the norm. You need someone to help you through this. Btw, you are right, your incision has to be healed before you start chemo...I know because I had surgical incision necrosis due to an allergy to steri strips. My onc wouldn't consider it until my PS deemed me worthy.

    Good luck and please keep us posted.

    Amy

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited October 2014

    RosettaStone - Just wanted to chime in and reinforce Amy's words of wisdom above. I had a surgeon that also made me feel like I was the problem - she just flat out went psychotic on me on the pre-op visit. If I didn't have it on tape I'd really not believe it myself. So, I really doubt it's you and no, you're not the only one this happens to. 

    I doubt that you really have to be referred to the oncologist via the surgeon but if a referral IS required, get someone else to make it for you - your primary care physician, the social worker, the nurse navigator. Anyone. 

    Also, if you start to feel like you're being marginalized or condescended to, just walk away. There truly are LOTS of good surgeons, oncologists and radiologists out there but there are plenty of egotistical jerks and b.....s as well. Don't feel like you have to settle for the jerks due to time constraints or whatever. You NEED someone who's on your side. 

    Good luck and hang in there.

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  • Rosettastone
    Rosettastone Member Posts: 10
    edited October 2014

    thanks so much for the responses, it really makes a difference.  I'm feeling somewhat better today because at least i'm not blaming myself.  I have heard these sorts of things about MSK for years, i just thought their expertise in tx would overcome the deficits in the way they treat people -- at least the ones that aren't privileged in some way.  The reason i didnt report this & other neglect to patient reps is that i don't trust them because they work for the hospital, not for me.  am i being paranoid?  And if i stay at this hosp i will have to have further dealings with this surgeon -- as my first doc i think he remains in charge of me nominally.

    Amy, BTW, the only way i found out about my necrosis delaying my chemo was from an onc at another hosp that i spoke to on the phone.  And this healing may take a very, very long time. The soc worker has been of some help but she's away for 2 wks, and besides she couldnt be more tight with this surgeon.  Finally, yes, the policy at MSK IS that the more desirable oncs (not just the few "celebs") have to be requested thru your surgeon.  They don't advertise this.  But it's not surprising at all.  MSK cannot afford to alienate ALL of its pts with lousy,  impersonal, "assembly-line" tx, so they have separate "tiers" for their more valued pts.  My cousin, e.g., told me she knows some very top people at Sloan and was treated like royalty, but that her aunt's experience was the pits.

    Btw, i also requested a therapist because of my increased distress level, and maybe that will help.

    Thx again.

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  • LovieLovie
    LovieLovie Member Posts: 68
    edited October 2014

    Rosettastone -  I had a similar situation with my first oncologist.  I was knee deep and didn't want to delay treatment so I stuck with him until the last day of chemo and then I fired him.  Something was 'off' with him, possibly on drugs.  He walked in the room with no idea of who I was each week.  He didn't bring a computer or my chart into the room.  He would ask me what medication I was on and I said just the ones you prescribed to which he said what are those?  So, I would rattle them off thinking he was checking my memory.  No.  He took a call in the room I was in from somewhere and proceeded to talk about a patient that was clearly in organ failure, I didn't need to hear that! oh, and also a personal call too.  He asked me if I was estrogen positive and I said no I'm triple negative and he said well I will have to verify that.  I would keep going but the bottom line was it kicked me into gear to become my own advocate.  Not a difficult patient.  I made friends with the nurses, receptionist, the medical assistants and I verified EVERYTHING he told me.  My treatment was a standard protocol so I didn't have worries there.  Now, when I get to my appointments I have a list of questions and my MO and I are a team.  She knows I have already done my research as far as I can.  The bottom line is that these medical professional have a lot to do but you can help keep them organized by letting them know what you expect.  I keep a 3x5 card for every appointment:  Last visit I requested a new scan mid-November (done, its scheduled), asked if I could get the flu vaccine (she said yes but only the shot as the mist is a live virus), asked about alternatives for pain, asked for the pathology on a recent fat necrosis removal, told her I wanted 2 weeks off in December-done.  She knows I don't want to waste her time and she is wonderful.  Think of it as building your team.  Good luck! We are all pulling for you.

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  • hopedreams
    hopedreams Member Posts: 85
    edited November 2014

    Hi Rosetta   I have been going to MSKCC for many yrs..and I have had 3 different cancers.. none related to each other including breast cancer. I did have a lot of issues with a certain Dr. there.. and went to see the person in charge of patient  advocates..True  the patient advocates are usually always on the Dr.s side of the arguements.. been there done that.. but U need to SHOUT OUT LOUD...  . !! and U will get the results that U need & want.. I was finally able to replace the Dr. that treated me so very badly. FYI>. [was NOT a breast cancer dr.] I actually feel that I have the best Drs. at MSK..and I truly know that they REALLY DO CARE  about me..as I am a very complicated patient..Please don't give up on MSKCC.. U just got stuck with a nasty one..& I am sorry about that. IF  I WERE U..I WOULD TRY PATIENT ADVOCATE [.make an appointment to speak to one in person..]..AND BE CLEAR IN WHAT U  ARE TELLING THEM.. JUST THE REAL FACTS..AND YOUR BIG CONCERNS..  good luck  and please let me know how U make out.. I can totally understand your feelings..and it is soo very frustrating  for U to deal with this now..THINK POSTIVE & THINGS WILL ALL WORK OUT IN TIME.. Hugs..Hopedreams..

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2014


    Go over the doc's head to dept chairmen----if that doesn't work go to the CEO, if that doesn't work go to the board of directors----each individually. Write it in a lette----Tell them each what you've said here in your topic box.

    Many here could offer a last paragraph to your letter. It needs to be an intellectual zinger. Pick and choose from each responders thoughts. Here's Mine for last paragragh.

    ------------------------------------------------

       To summarize, I sought care at your institution. I was assigned to Dr. Analpore.  He was rude and unresponsive to my thoughts and questions regarding my care. I was told I couldn't seek care from another Doctor in the practice without this Dr. Analpore's authorization.

     I have no trust in this Doctor Analpore. As you know trust is paramount to any doctor patient relationship. Add to no trust and that I'm blocked from seeking care from others because of his power, this is a very bad situation. Is this organizational tranny?

    I don't have time for your internal politics. I am dying. Please, set aside your childish power games, likely referred to as Departmental Procedure. I need to get on with my care. I am requesting to make an appointment with___________. Thank you for your assistance in this matter.

    ------------------------------------------

    Rosetta------it's written for the dramatic affect. If that phrase "I don't have time for your internal politics. I am dying." doesn't get their dicks in a knot, it'd sure would surprise me. I'm feeling particularly bitchy this morning. Hence my paragraph does go for the jugular.

    BTW analpore is a coined word from a friend who couldn't swear. Analpore was her word for asshole.

    Sorry, you are going through such shenniangans, men and their power games---shameful.

    Hugs sassy

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  • Lily55
    Lily55 Member Posts: 3,534
    edited December 2014

    organizational tyranny......but maybe Sas-schatzi uncovered why this doc is such an analpore...............

    I would also add a line saying - "I have added a copy of this letter to my medical notes and copied it to my solicitor in the event of my premature death due to avoidable delays resulting from protocols or politics affecting the timeliness and suitability of my care.

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