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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Feb 10, 2016 09:16PM whoknows wrote:

Hello ginnydeering,

Thank you for your post. As I was reviewing my 2014 biopsies and comparing them to the ones I had last week, I found some discrepancies that I'll be asking about in the next visit.

Thank you for sharing.

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Feb 16, 2016 10:01PM __asher__ wrote:

These are excellent tips, TonLee! Thanks!

Tina Dx 2/9/2016, DCIS, Right, 4cm, Stage 0, Grade 3, 0/30 nodes, ER+/PR+, HER2+, Targeted Therapy 2/23/2016 Perjeta (pertuzumab) Chemotherapy 2/23/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/23/2016 Herceptin (trastuzumab) Radiation Therapy Whole breast: Breast, Lymph nodes Hormonal Therapy Arimidex (anastrozole) Targeted Therapy Herceptin (trastuzumab) Surgery Prophylactic ovary removal Surgery Mastectomy: Right; Prophylactic mastectomy: Left
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May 24, 2016 06:23AM - edited May 24, 2016 06:24AM by mymagic

Hello !


I'm 62, recently diagnosed with Breast Cancer ER+/PR+/Her ++. Currently undergoing my 4th Chemotherapy . Have been put on Herceptin and Paclitaxel. Thank you Tonlee for this excellent forum!!

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May 29, 2016 02:07PM wam wrote:

I am 62 and just finishing treatment. I have Herceptin until July. Then I am clear. It is so scary but it does get better. All of you in treatment are going to feel good again! I had Perjeta, Toxotere and Herceptin. I was very sick but I pictured it killing all the bad cells. That helped me get through! There is a lady who posts here who says "Keep calm and carry on!". That is my new mantra!

9/28/16 Stage IV mets to chest nodes. Dx 6/2015, IDC, Both breasts, 5cm, Stage IIIC, Grade 3, 7/9 nodes, ER+/PR+, HER2- Radiation Therapy 4/3/2016 Whole breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal; Mastectomy Targeted Therapy Herceptin (trastuzumab) Chemotherapy Other Chemotherapy
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May 29, 2016 03:40PM 2ND20 wrote:

Wow so sorry to hear your story. I have had nothing but positive caring doctors and nurses. Sure am counting my blessings.

Dx 2/9/2016, Left
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Jul 27, 2016 02:43AM maon wrote:

Thank you for the plan. Also it helped to see Bessie's post on the nature of the plan. I went in for my second treatment, of 18, and encountered a negative situation. I reacted, voicing my feelings of being ignored while the nurse got on with packing up the center to move in 3 days. I did receive an apology, but not from the main nurse. However, already feeling bad, I felt bad the rest if the day. I had questioned the neglect. I appreciate the power one feels having a plan for questioning when something is not right.

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Jan 21, 2017 01:52PM sportsee wrote:

Wow. I LOVE this original post by TonLee. This is exactly what I needed to hear right now. Thank you!

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!"

....

"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.)

Hormonal Therapy 1/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/25/2017 Lumpectomy: Right
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Nov 2, 2017 08:26AM - edited Nov 2, 2017 08:41AM by coachvicky

This Post was deleted by coachvicky.
Dx 6/2016, DCIS/IDC, Both breasts, Stage IIA, Grade 3, ER+/PR+, HER2+, Dx 6/7/2016, LCIS/DCIS/IDC, Right, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2+, Surgery 7/11/2016 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/21/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/22/2016 Herceptin (trastuzumab) Surgery 1/20/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/22/2017 Prophylactic ovary removal Hormonal Therapy 4/4/2017 Arimidex (anastrozole) Surgery 10/19/2017 Targeted Therapy Surgery
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May 26, 2020 10:45PM bcfightermom wrote:

Great reading this. Thank you for putting this together.

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Nov 30, 2020 08:14PM Joplinchick wrote:

Thank you Tonya... Helps for sure!

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