It would be nice if.....

AllyJay Member Posts: 948
It would be nice if my surgeon had a good memory. Oh...and some people skills would be good too and an attention to detail wouldn't go astray either!!! Perhaps it's just me, but somehow I doubt it. I have a preexisting autoimmune disease (scleroderma) which will impact on my bc treatment in a big way. Radiotherapy is strictly off the table as part of my treatment which in and of itself cuts my options and obviously end results overall. The potential internal damage to heart and lungs is apparently very significant with this condition. Surgery also brings its own problems with wound healing as my skin is very thick and non elastic. Poor blood supply due to vascular damage adds to the list. At my first post starting chemo session with my surgeon (second one altogether), she had completely forgotten about the scleroderma, as was made clear by the conversation going along the lines of..." well you've finished the AC part of your treatment...there's been a very good response so blah blah blah...we'll do blah blah then you'll have your follow on radiotherapy, the blah blah..." at which point I stopped her and said.." Oh I was told that radiotherapy was a total no no for me". She looked at me and asked what gave me that idea and the said..."Oh yes....that's I're the lady with the scleroderma!!!  That changes things considerably... Well this week I saw her again, having just completed dose 10 of 12 of Paclitaxel and dose 4 of Herceptin to firm up the date for surgery. She had not even glanced at my file (again) and after the briefest greeting said, "Well now you've finished your chemo, we can firm up your surgery date.." I replied that I hadn't in fact finished, and still had another two treatment each a week apart of the Paclitaxel to go. She contradicted me and said "'re finished". I replied firmly that I wasn't finished, there had been a seven week delay between completion of the Ac therapy and the Pac / Herceptin treatment due to complications which...(hint hint) were all in my file. She brushed over that and dithered and clickety clicked on her computer. finalised a date. and then went into her routine as in the previous appointment. (All the blah blah as above) finishing with the .... "and then you'll have your follow on Radiotherapy..." I cut in (again) and asked (again) to clarify the business of the radiotherapy. Again...the finger click. and the "Oh yes..that's right...You're the lady with the scleroderma ..." crap!!! This is the Tinkerbell who is going to have me unconscious on the table before her while she wields her Whippersnipper on me chopping of bits and pieces!!! I hope to hell she reads my file and refreshes her memory before she does so!!. I don't want the finger snap and the "Oh that's right..." routine after the event, when she hasn't taken bigger and deeper margins, factoring in that ....Hello...ring-a-ding-ding...there will be NO radiotherapy to mop up any stray bits left behind. Oh...and please don't forget not to sew me up too tightly (as you have told me you have to do). Oh, and the layers of suturing will differ too...oh and the vac dressing which I'll need...not the regular one. Sigh... And then, just to add insult to injury, I noticed in the car on the way home, that she'd filled in on my Admission Booklet..."Estimated Procedure Time (minutes) 2 1/2.....F**k...that's fast!!! Two and a half minutes from start to finish!!! So much for her attention to detail.....this is a legal medical document!!! Can someone pass me a Valium please???


  • melclarity
    melclarity Member Posts: 3,519
    @Ally Jay OMG!!!! Is all I can say after reading that, I am absolutely reeling!! how the hell do you have confidence in that at all?? Im with you totally, get the goddamn Vallium!!!! GRRRRRR Having faith in your Specialist is so paramount and I just cannot believe how flippant she was and not informed. What the hell???!!! really not good enough, especially going into surgery. Honestly if you have serious doubt about her competency in handling your particular case dont be afraid to stop and get a referral to someone else to take it from here, honestly there are others who have done it, this is your life! Id be beside myself if that were my Surgeon who ive had 6yrs now, complete faith in him and anything he says, he is honest, brutal and on the ball and versed on your case entering his appointment. As they ALL should be! Really shocked and annoyed for you! Hugs Melinda xo
  • Afraser
    Afraser Member Posts: 4,388
    She's undoubtedly busy, may not have the best communications skills, didn't get a chance to read her files before your appointment, etc. etc. All of which is her problem and should not be your problem. If you can't have faith in your specialist, an already difficult situation for you becomes untenable. I agree, consider requesting another referral. She may be perfectly competent, but she's not building any confidence in you and that's a problem all by itself. Good luck!
  • Zoffiel
    Zoffiel Member Posts: 3,372
    edited March 2017
    Wow. How committed are you your relationship with Tinkerbell? Yes, they are busy if not overworked, but, sheeeshh, that's a bit casual.
    Your mission on surgery day is to make yourself absolutely unforgettable. Maybe print up a little 'Lady with the scleroderma' sign and stick it to your head before you go into theatre. And tell all and sundry you are doing it because she tends to forget. There you go, memorable. Passive aggressive and faintly ridiculous, maybe,. But she won't forget you.
  • iserbrown
    iserbrown Member Posts: 5,561
    @Ally Jay goodness none of us are generic in our treatments and for you there are added elements.  Sounds like your specialist is so busy and not spending a couple of minutes reading the file prior to calling you in!  It is about whether you have confidence still or your gut feeling is otherwise!  There is nothing wrong with going to someone else if you're not happy. I hadn't heard of scleroderma till I read your post so I've just looked it up. 
    Take care
  • SoldierCrab
    SoldierCrab Member Posts: 3,446
    I see a stop sign.  HUGE fricken stop sign.... for me that would totally do me in I would be off for a new referral...

    This is your life your body and she is seemingly flippant about your medical history.... 

    Are you in large city or small rural area?  Have you got a Breast Care Nurse .... ask for a new referral from  her.... http://http//

    It really sounds like she is not a good communicator might be a great surgeon but really I would be asking for a new referral. 

    Hugs and heres the valium

  • Cate64
    Cate64 Member Posts: 446
    @Ally Jay bloody hell!!! Are you being treated by The Northern Hospital by chance?? Sounds so familiar..
  • nikkid
    nikkid Member Posts: 1,766
    As everyone has said above, you've got every right to expect genuinely unique attention from your surgeon. In the early days of my BC diagnosis, I actually researched up and went to 2 different surgeons (one a second opinion) just so I could see what I thought of the 2 different approaches, and determine who I responded to best. I was so happy, in the end, with my decision. I know I'm lucky because I was able to do this through the private system...but even so, you have every right to expect the surgeon sees YOU.

    It is sooooooo important to the process that you feel happy in your team, that you can trust them and that you genuinely feel they have your back: if you don't feel this; get a new team.

    Thinking of you. Nikki x
  • AllyJay
    AllyJay Member Posts: 948
    Thanks for the feedback, fellow warriors. Unfortunately I'm a public patient at a large teaching hospital in Sydney, where I see a number of specialists. Hospital grapevines being what they are, with doctors sticking together like shit to a blanket, would make asking for another surgeon rather difficult for me. Tinkerbell is supposedly a Senior Surgeon there and so I hope, is technically proficient. I had already decided to take to my front with a texta, and writing "Hi there Dr Blah Blah....don't forget...I'm the lady with the scleroderma"!!! Passive aggressive be dammed!!
  • brightspace
    brightspace Member Posts: 445
    Hi Ally j
    Your surgeon is part of your care team
    Your treatment plan involves many specialists ...would be good if you let your concerns be known to gp /breast care nurse/even oncologist. You are entitled to ask questions about your care. Forget the grapevine. Its about expecting a Dr to know the correct specifics about a patient and not fudge the details.
    Always take some one with you .
    Your should always have a copy of your treatment plan .....query does it tally with the date of  copy.
    Good luck