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What I Wish I Knew At the Beginning of Treatment!

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Two years I’ve been on this board. 

I’ve read several accounts of women who struggle with a desire to be polite vs speaking up about incompetent medical care, poor bedside manner, asking questions, asking for proof, etc.  Have read them, have experienced them myself!

The vast majority of this heartache seems to come from a hesitancy to be “rude.”  If like me, you come to this Breast Cancer table a healthy adult all your life, you probably have no idea how to deal with an uncomfortable, even painful situation, in a medical setting.

Don’t get me wrong.  I do believe most people in the medical community are compassionate, educated, and on top of their game.   

But even the best have “off” days.  Having a plan to minimize the effect on you is worth the mental toil and preparation!

This isn’t just about Oncologists and surgeons.  It involves every single person you come into contact with during your tx, primarily the ones who TOUCH you.

I am not a naturally calm retiring personality.  Yet, even I struggled with how to be assertive in the medical sphere without being offensive.  Doctor knows best, right? 

Well.....

Here are a few things I wish I knew going in:

1.  HAVE A PLAN

Not a treatment plan necessarily, but a rough outline of how you will deal with medical incompetence, uncomfortable situations, etc.

Ways you are comfortable executing.  And I encourage you to practice them out loud.

You are going to be in treatment for a while, months, years even, and for some, the rest of your life.  More than likely you will run into situations in which you are certain the person is incompetent, dirty, or you simply aren’t confident in their ability for one reason or another.

If you’ve thought about a strategy to handle a bad situation, it makes things far easier, far calmer, and more expedient to implement.

2.  THINGS TO REMEMBER (every step of the way).

1. This person works for you. Period.   

2. This isn't a car, it is YOUR BODY.   You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you.  You have final say in what happens and what does not happen to it.  Period. 

3. Advocate for your body like you would a child's, a husband's, a best friend's.

4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!

(Okay that last one I don't always say to myself....it’s the gist I’m trying to relay here, lol.)

Here are some of my hard learned "rules.”  They apply to me, but may not apply to everyone’s personality or situation.  Please read them with that in mind.

1. I don't mind trainees, but they get one shot for a vein or procedure. After that, I am asking politely for an experienced doctor/tech/nurse/whoever. I will get one, or I will simply stop the procedure and leave.  If in the middle of a procedure, I’m not a hostage.  I will insist on a replacement and be willing to wait them out.  Or worst case, leave and go to the ER.

2. Walking out is ALWAYS an option. Barring emergency medical tx, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.

3. If someone makes me uncomfortable, doesn't wash their hands before touching me, seems overly nervous, ..in short if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc.  Insist on it.

3.  GOOD COP BAD COP

If you are a more retiring personality, and have a husband, wife, adult child, friend, WHOEVER..tag teaming is always a bonus.

You can discuss in private your idea of how your tx should go.  What is and isn’t acceptable.  Your advocate can then go all attack dog when some sweaty incompetent tech drips all over you while stabbing your arm with a needle at least 10 times!  (What?!?  True story.)

Example:  My husband is great in this role even though I don't need him to be most of the time. A trainee tech tried to draw blood from my arm once, got the vein on the first hit, but forgot the tourniquet.

No blood came out.  He kept pushing and pulling the plunger trying to use suction, blood into vile, blood out.  Before I could say anything, (I wasn't paying close attention because I was talking to a lady beside me and his work hurt) hubby told the kid to "get away from my wife. I'm not even a medical professional and I know you don't draw blood without a tourniquet. Where did you go to school? Get the hell out of here and find someone who knows what they're doing.")

The trainee left, the boss came in, done in 15 seconds.

Now my husband may have over-reacted a tad. lol   In his defense, we’d had a series of appts that day, all of which involved trainees, and none of which went well on the first try.

But even if you have an advocate, it's good to have things in your arsenal...they can't be with you every second and fight all your dragons! ;)

Here are some of my “go to” phrases:

1.  “I’m not comfortable with this.  Would you mind finding someone else to do it?”

2.  “I understand your points.  I hear you.  But, this is what I’ve decided.  Are you willing to do it?”  (Be ready to move on if the professional says no.)

3.  “This is not working for me.  I’d like to speak with your supervisor.”

4.  “This is unacceptable.  I’m not going to go any further until (insert what you want here).”

5.  “I’d like to see the patient advocate on staff.”

6.  “Look, I appreciate that you tried, but this is not working.  I’d like to see someone else.”

7.  “Can you give me the research to back that up?”

8.  “Have you seen this latest study?”  (Always bring a copy!)

Please feel free to add any additional insight or lessons you've learned a long the way and wish you knew at the beginning.

Hope this helps :)

My best to you.

Tonya

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Comments

  • ablydec
    ablydec Member Posts: 36
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    Wow, this is helpful.  Finding that balance of assertive but polite can be tricky.

  • TonLee
    TonLee Member Posts: 1,589
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    Thanks Ablydec. 

    This came about as a result of one of the women on the Triple + thread enduring 4-5 hours of torture from a home health professional.  I read her account and thought, hmmmmm.  Been there.  Learned from that.  lol  Maybe I should pass along some of that hard earned info!

  • leggo
    leggo Member Posts: 379
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    TonLee, this may be the most well thought-out, informative post I have ever seen on this board. Very well said and it will be very helpful to so many.

  • TonLee
    TonLee Member Posts: 1,589
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    Thanks Gracie :)

  • beesie.is.out-of-office
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    Tonya, great post!  I do want to restate one of your points, which is that:

    "I do believe most people in the medical community are compassionate, educated, and on top of their game."

    I was lucky. I don't recall ever running into any problems with anyone I dealt with through my whole breast cancer process. I know it happens - reading this board, it's obvious that it happens - and I agree that it's important to have a plan on how to handle it.  It's important to deal with it and not accept being treated badly or being forced into situations that you don't want to be in. But I want to emphasize that most experiences are good ones. I don't want anyone to expect that this will happen to them, because most medical professionals are professional and do their jobs well. But if they are not, then you do have to be prepared. 

    The only other thing I'll add is that it's important to remember that you catch more flies with honey than with vinegar.  My strategy is to always start out polite, to always assume that the error is really an error, a mistake that someone will want to correct.  Or that someone was just having a bad day or is really busy and forgot to do something. So I'll start by saying something like "Maybe I don't understand...." Or "Could you help clarify this for me?".  Or "I'm confused because what you're saying is different than what I read...". Or "I thought what was going to happen next was..."  I start by positioning myself as being the one who has the problem (even if I know that they are causing the problem).  If after starting out politely I don't get the reaction or change in behaviour or additional information that I am expecting or hoping for, that's when I bring out the big guns!

  • TonLee
    TonLee Member Posts: 1,589
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    Beesie,

    You are fortunate.  I have likely had more than my share of encounters because I am treated at one of the largest training hospitals in this area.  And I actually don't mind (as I stated before) getting someone in training.  I always appreciate if they ask me first though.

  • beesie.is.out-of-office
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    Tonya, I was treated at one of the largest teaching hospitals in Canada.  I thought it was great, because after the initial visits (which were long and very thorough and held privately with no Residents or anyone else present), my BS, PS and MO didn't always have a lot of time to spend with me to answer my questions, but the Resident would spend as much time with me as I needed. I'd always see the Resident first, then he or she would review my case with the surgeon or MO, and the surgeon or MO would come in, often without the Resident.  If the Resident was unsure about anything I asked about, he or she would discuss it with the surgeon/MO and then the surgeon/MO would talk to me about whatever it was.  

    I was never asked about having a Resident present or having a Resident do a procedure, but I was always asked before an Intern or a student was allowed to enter the examining room or participate in any discussions.  

    Overall for me being at a teaching hospital was a very positive experience. But the thing I've learned from being on this board all these years is that each of our experiences is different.  And I know that I was lucky!

  • TonLee
    TonLee Member Posts: 1,589
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    Beesie,

    Second year residents removed my port.  It took almost an hour!  And well, let's just say, at my hospital, they not only do procedures, they "assist" during surgery .....I had to specifically ask that the intern NOT actively participate during my Ooph.  Made them promise in writing...lol.

    It is standard procedure to not only allow them to operate, but often times, allow them to be "lead" surgeon....with a real surgeon next to them in the OR.

    When they removed my port, there was no other doctor present. 

    Tomato-TAMATO...lol.

  • [Deleted User]
    [Deleted User] Member Posts: 814
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    Great post TonLee.

    There are some "unfortunate" things that happen to us. Some of those things come from  extenuating circumstances, some are genuine mishaps /mistakes and some are glaringly UNNECESSARY pure negligence.  We can work through the first two but I'd suggest it is a different animal when we are dealing with the last. 

    I had a situation in the "last" category earlier on this year. Quite frankly it was a shocker. It was guns blazing straight away because the negligence was so obvious. When I laid an official complaint and a proper meeting was set up, my intention was that I wanted a good outcome that was going to MEAN something and be beneficial to all. Let me tell you I most certainly stood my ground, because I was right, there was NO question about that. That being the case, the fireworks was already in the past, it was like now what are we going to get out of this. I employed the strategy of always being polite but honest and firm, rather than rant and rave and do my block which I  was surely justified to do.

    The outcome was UNBELIEVABLE! I was thanked by the person in question, and it actually rounded off with a hug as well. I was able to give this high powered medical professional some study notes and get some issues resolved involving what my needs are in a particular area. From people I brush shoulders with to just hearing others recount their experiences, it is my view that these horror stories are too common.

    Thankyou for starting this thread.

  • TonLee
    TonLee Member Posts: 1,589
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    Wow Musical.  That's a wonderful result!  You must be quite a lady :)  Thanks for sharing that!

  • cowgirl13
    cowgirl13 Member Posts: 782
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    TonLee, that was terrible about your port.  Were you awake during this?

  • LeeA
    LeeA Member Posts: 1,092
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    TonLee ~

    Bravo!  Excellent post!  

    Thanks to a recent episode I've developed quite a bit of anxiety over IV placement, something I've never given a thought to prior to last week's experience.

    Since the initial debacle I've had to have three more IVs placed.  Of course, the first night was a fail all the way around after four attempts.  As a result, I missed fourteen full hours of intravenous Vancomycin. 

    The first successful attempt took place in my MO's office and the technician/nurse had the IV in and operating in 2-3 minutes.  That one worked for a few infusions but started to leak (apparently Vancomycin is hard on the veins) so the next IV (administered by yet another home health care nurse) involved two attempts - which I can fully understand as my right arm has never been my best arm for blood work.  

    The third IV was placed by another home health care nurse who hit it on the first try.  

    I was supposed to have a PICC line placed but when I got there for the procedure last week the radiologist's assistant asked what side the infection was on and when I told him the right he said "we'll have to place the PICC line on the left."  My antennae went straight up because my BS has said from day one that I can't even have blood pressure taken on my left side.  

    When I relayed this information I was told that they would not place the line on the right side because of the infection - so once again, I was in a quandary.  

    I walked across the hospital grounds to my MO's office but it turns out he was out of the office until this coming Wednesday so I ended up foregoing the PICC line.  

    I placed a call to my BS's office and was told once again: absolutely nothing on the left arm.  Had I not been paying attention or had I just turned myself over to what the people in charge at the moment were saying I might have put my left arm at greater risk for future lymphedema.  

    So, what I've learned thus far is this: 

    No one knows our personal medical situation as intimately as we know our own.  That doesn't mean that the doctors don't know what they're doing:  they do(!!!) - and what I'm trying to convey is something completely different, which is this: in the process of coordinating our care between different doctors and/or teams it is imperative that we (as patients) keep on top of everything as it is happening.    

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
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    I never hesitate to speak up and I am quite good at doing it in the nicest, politest, but very clear way. Stanford University interns and residents do rotations at my medical facility. Most are great but when my lung collapsed and I had to rush to the ER, everything happened so fast and once the chest tube insertion started I was in great pain and couldn't advocate for myself. My 22 yr old dd was with me, but was distraught and I didn't want her in the room why they were performing this brutal bedside procedure. Turns out, the chief surgical resident was supervising an intern or resident through the procedure. It was beyond painful. When she was done and I was still in extreme pain, my dd sprang into action and relentlessly pursued the doctors until they put Fentanyl in my IV (ah, relief). Well, the next day as I lay in my hospital bed, the chest tube literally fell out. They paged the same surgical resident who had supervised the procedure in the ER. He called the nurse and the first words out of his mouth were, "please, tell me it's not Mrs. X, anybody but Mrs. X..." He felt so bad about having to re-insert the chest tube, but they gave me a lot more drugs !

    Caryn

  • TonLee
    TonLee Member Posts: 1,589
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    YEs Cowgirl, wide awake.

    And they were stingy with the numbing shot.  Like paying for it was coming right out of their XBox fund ;)

  • TonLee
    TonLee Member Posts: 1,589
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    Carn,

    UGH!  I had to get a chest tube after port insertion because my lung was punctured and collapsed.

    Also bedside.  Also an intern.

    Wore that nasty thing for 3 days.

    They put something in my IV but it still was by far the most painful thing in all of tx.  I didn't scream but kept saying...ouch ouch ouch ouch ouch.  lol

    My husband was there and barking at them to hurry it up!  lol

  • bren58
    bren58 Member Posts: 688
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    bump

  • lisabug
    lisabug Member Posts: 1
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    Thank you for your post.  I was just diagnosed 2 weeks ago and have kept it from my family through the holidays..................... not fun

  • LeeA
    LeeA Member Posts: 1,092
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    Oh gosh, lisabug.  I'm sure that's made it all even more difficult for you...  

  • TonLee
    TonLee Member Posts: 1,589
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    Lisa,

    I'm sorry you're here.  Hope things go well when you tell the family. 

  • fredntan
    fredntan Member Posts: 237
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    Always ask what pain meds willbe offered after sx.

    Woke up from unimast with 300ml in TE. PCA was reserved for bilaterals.



    Ask about what they will do to prevent blood clots. SCD stockings are standard after sx.



    And always get copies of your reports



    Have your mammo read by radiologist that just reads mammos

  • TonLee
    TonLee Member Posts: 1,589
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    Thanks Fred!

  • barberchic
    barberchic Member Posts: 51
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    Thank you so much for sharing!! I was just diagnosed Jan. 9th! I'm really scared.....waiting for my pre-op MRI, then surgery and so forth! Best wishes to you!

  • princesspistol
    princesspistol Member Posts: 2
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    Thank you so much for your post. I live in Dayton, OH near you. And I just started this whole nightmare. I was shocked when I went in for a Biopsy, and while the doctor did my lymph-nodes and it didn't hurt, she had a resident practice on me to take the core biopsy. The resident couldn't hold the ultrasound handle and get the needle in at the right direction, the doctor had to help guide her. Now 4 days later, my breast still hurts and I am bruised like crazy, and this is just the Biopsy.



    Any doctors offices to stay away from? Any that you recommend? (Private message me if that is more appropriate). I will definitely speak up next time I am not comfortable with a newbie touching me.

  • LeeA
    LeeA Member Posts: 1,092
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    princesspistol, good grief - of all the things to have someone practice on - a breast biopsy!  I'm so sorry you had to go through that!

  • TonLee
    TonLee Member Posts: 1,589
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    Barber,

    Please join our triple positive thread.  You will find comfort, and lots of information.

    http://community.breastcancer.org/forum/80/topic/764183?page=494#idx_14813

    Princess, I am PMing you!

  • besa
    besa Member Posts: 289
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    Great information- a wonderful post.  Thank you!

  • Lorettal
    Lorettal Member Posts: 1
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    Thank you so much for this post. I am a nurse and have just been diagnosed with invasive DCIS, and I feel as though I am being pushed to have a mastectomy with no other information. I have been able to have the surgery delayed until 2-18 so I am going to talk with the surgeon. I have been feeling bad that I am questioning him, but I feel so overwhelmed with all that is happening. I am single so I will see if I can get a friend to go with me and be the interrogator. Thanks for listening. Loretta

  • LeeA
    LeeA Member Posts: 1,092
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    Loretta, I think you are on the right track when it comes to having someone accompany you when you meet with doctors/surgeons - especially during the early part of the diagnosis period.   

    Have you thought about getting a second or third opinion?  My breast surgeon encouraged me to get other opinions but in my case, I was certain I wanted him to do the work.  

    Best wishes to you.  

  • LindaKR
    LindaKR Member Posts: 1,304
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    princesspistol - the person doing the biopsy held the ultrasound wand too????  When I had mine the US tech held the wand and moved it where the doc wanted it will the radiologist did the biopsy - I don't even see how they could do both and not have issues - good heavens! 

  • maureen1
    maureen1 Member Posts: 87
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    (((Lorettal))) so sorry you have to face this...I am a nurse too and know how tough it is to be "on the other side of the table", we're so used to taking care of everyone else. Glad you are pushing for answers to your questions and not rushing to a decision until you are comfortable. My breast surgeon let me go with a lumpectomy and chemo first so we could get the information we needed from the pathology and get treatment started before deciding on a mastectomy, that was okay in my case but there may be factors that need to be considered in your case that make mastectomy the better decision for you? You will find a wealth of information and support from these forums and that will help you with your decisions, there is a thread on lumpectomy vs mastectomy - Now that I've had time to look at my pathology and risk factors I have made the decision to go forward with a bilateral mastectomy with immediate reconstruction but can't have surgery until March 4th when the chemo side effects have cleared a little more. Keep asking questions, you can use your nursing skills and experience to fight for yourself now...let us know how you're doing...you are in my thoughts and prayers, take care, Maureen