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 07:49AM - edited Dec 10, 2012 08:16AM by TonLee

Posted on: Dec 10, 2012 07:49AM - edited Dec 10, 2012 08:16AM 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 08:58PM cowgirl13 wrote:

TonLee, that was terrible about your port.  Were you awake during this?

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Dec 10, 2012 09:43PM - edited Dec 10, 2012 09:46PM by LeeA

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.    



God is with you in all that you do. Dx 10/9/2012, IDC, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2+ Chemotherapy 1/1/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 7/29/2013 3DCRT: Breast, Lymph nodes Hormonal Therapy 10/9/2013 Arimidex (anastrozole)
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Dec 10, 2012 09:47PM exbrnxgrl wrote:

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

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Dec 11, 2012 01:55PM - edited Dec 11, 2012 01:56PM by TonLee

YEs Cowgirl, wide awake.

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

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 11, 2012 01:58PM TonLee wrote:

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

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 15, 2012 03:40PM bren58 wrote:

bump

Faith is having the courage to let God have control. Dx 7/4/2000, DCIS, Stage 0, Grade 3 Surgery 8/27/2000 Lymph node removal; Lymph node removal (Right): Sentinel Surgery 8/27/2000 Mastectomy; Mastectomy (Left); Mastectomy (Right) Surgery 12/4/2000 Reconstruction (Left); Reconstruction (Right) Surgery 12/1/2009 Reconstruction (Left): Nipple reconstruction; Reconstruction (Right): Nipple reconstruction Surgery 9/10/2012 Lymph node removal; Lymph node removal (Right) Dx 9/11/2012, IDC, 1cm, Stage IIB, Grade 3, 1/29 nodes, ER+/PR+, HER2- Targeted Therapy 11/29/2012 Herceptin (trastuzumab) Chemotherapy 11/29/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/24/2013 Lymph node removal; Lymph node removal (Right): Underarm/Axillary Hormonal Therapy 7/24/2013 Arimidex (anastrozole) Hormonal Therapy 7/31/2014 Aromasin (exemestane)
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Dec 24, 2012 11:39PM lisabug wrote:

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

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Dec 24, 2012 11:41PM LeeA wrote:

Oh gosh, lisabug.  I'm sure that's made it all even more difficult for you...  

God is with you in all that you do. Dx 10/9/2012, IDC, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2+ Chemotherapy 1/1/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 7/29/2013 3DCRT: Breast, Lymph nodes Hormonal Therapy 10/9/2013 Arimidex (anastrozole)
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Dec 26, 2012 07:24PM TonLee wrote:

Lisa,

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

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 27, 2012 08:14AM fredntan wrote:

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

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Right) Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 4/2/2013 Reconstruction (Left): Nipple reconstruction; Reconstruction (Right): Nipple reconstruction Dx 10/2013, Stage IV, mets, HER2- Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy

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