Topic: What I Wish I Knew At the Beginning of Treatment!

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Dec 10, 2012 08:49AM - edited Dec 10, 2012 09:16AM by TonLee

Posted on: Dec 10, 2012 08:49AM - edited Dec 10, 2012 09:16AM by TonLee

TonLee wrote:

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

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Dec 10, 2012 09:10AM ablydec wrote:

Wow, this is helpful.  Finding that balance of assertive but polite can be tricky.

Dx 9/24/2012, IDC, 2cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Surgery 10/12/2012 Lumpectomy: Right Surgery 11/3/2012 Lumpectomy: Right Surgery 11/24/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 1/10/2013 Herceptin (trastuzumab) Chemotherapy 1/10/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 5/21/2013
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Dec 10, 2012 09:13AM TonLee wrote:

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!

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Dec 10, 2012 09:14AM leggo wrote:

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.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Dec 10, 2012 09:15AM TonLee wrote:

Thanks Gracie :)

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Dec 10, 2012 09:25AM beesie.is.out-of-office wrote:

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!

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Dec 10, 2012 02:44PM TonLee wrote:

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.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Dec 10, 2012 06:03PM beesie.is.out-of-office wrote:

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!

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Dec 10, 2012 06:27PM TonLee wrote:

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.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Dec 10, 2012 07:02PM Musical wrote:

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.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Dec 10, 2012 08:42PM TonLee wrote:

Wow Musical.  That's a wonderful result!  You must be quite a lady :)  Thanks for sharing that!

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+

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