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 15, 2014 03:55PM MsJAR wrote:

Next40, you ARE the star of this video, and believe me, they are making big money from you.  You have every right to change to a group who will treat you with compassion and respect. Good luck to you, and welcome to the boards. 

JoAnn

Dx 11/7/2013, ILC, 5cm, Stage IIIA, Grade 2, 1/6 nodes, ER+, HER2+ Surgery 11/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/8/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 15, 2014 03:57PM MsJAR wrote:

Sorry, meant "rodeo" not "video".  Darn auto-correct!   Lol

Dx 11/7/2013, ILC, 5cm, Stage IIIA, Grade 2, 1/6 nodes, ER+, HER2+ Surgery 11/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/8/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 16, 2014 08:01AM bren58 wrote:

BUMP for all the newly diagnosed.

Faith is having the courage to let God have control. Dx 7/4/2000, DCIS, Stage 0, Grade 3 Surgery 8/28/2000 Lymph node removal; Lymph node removal (Right): Sentinel Surgery 8/28/2000 Mastectomy; Mastectomy (Left); Mastectomy (Right) Surgery 12/5/2000 Reconstruction (Left); Reconstruction (Right) Surgery 12/2/2009 Reconstruction (Left): Nipple reconstruction; Reconstruction (Right): Nipple reconstruction Dx 9/11/2012, IDC, 1cm, Stage IIB, Grade 3, 1/29 nodes, ER+/PR+, HER2- Surgery 9/11/2012 Lymph node removal; Lymph node removal (Right) Targeted Therapy 11/30/2012 Herceptin (trastuzumab) Chemotherapy 11/30/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/25/2013 Lymph node removal; Lymph node removal (Right): Underarm/Axillary Hormonal Therapy 7/25/2013 Arimidex (anastrozole) Hormonal Therapy 8/1/2014 Aromasin (exemestane)
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Sep 26, 2014 12:59PM - edited Sep 26, 2014 01:06PM by mannettes

This is great information. My husband has been a great advocate for me. When the nurse practitioner told me I wouldn't be getting any local anesthetic and on the same day I had a bad breast MRI experience, totally the techs fault because to begin with she claimed there wasn't a mirrored headrest, among other things she did, my husband called them to complain and said, "If you don't give her drugs, this surgery isn't happening." Bless his heart. He did that because when I got home I was crying and had cried all the way home, I guess I'd had all I could take. He was with me but had to leave to pick up our daughter at school.I am not a wimp, I've bore 8 children without an epidural and I'm not a complainer, but if you show me a needle I turn into a puddle on the floor. The bad MRI experience was dealt with also but I won't go into the details. I also got to the point when one of my three Dr's wanted to examine me again, and I knew they would use the MRI before surgery because it was more accurate, I started saying no, not this time, I'm sorry. You're right on so many levels. As time went on I did get a little testy, not rude, just testy.

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Oct 24, 2014 06:09PM knmtwins wrote:

I sent the part about your husband and the blood draw to my husband.  It had me laughing hysterically.  Hopefully it will improve his ability to be bad cop.  Thanks for posting this!

Dx 6/4/2014, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Targeted Therapy 7/15/2014 Herceptin (trastuzumab) Targeted Therapy 7/15/2014 Perjeta (pertuzumab) Chemotherapy 7/16/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/2/2014 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 3/17/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 5/2/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Tissue expander placement Surgery 8/27/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/3/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy 10/1/2017 Nerlynx Targeted Therapy 11/4/2017 Nerlynx Chemotherapy 3/27/2019 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery
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Nov 2, 2014 11:06PM Renya wrote:

From my perspective, I'd like to add that anyone who is dx'd with BC check out BreastCancerLaserSurgery - why put yourself through such a hellish misery of mastectomy, lymph node removal, chemo, radiation, reconstruction, etc.   Maybe i'm missing something, but there's no way in hell i'd go through such a barbaric procedure which still has a miserable cure rate.  I had Laser Surgery, now going into year 8 with Stage 4 BC been told my six onco's best I could hope for was maybe two years, well ----looks like our illustrious medical geniuses are wrong again.  I know my onco is peeved, keeps asking me what i'm doing, well, i'm doing his job - i'm saving my life, something the cancer industry is not interested in doing.  There are many cures for this beast, you can't tell me, i'm here of my own accord, doing simple common sense proceodures, and oncologists scoff when I tell them my secrets.   I'm totally disgusted, don't have any respect for any oncologist who won't do research and just rely on Protocol......

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Nov 2, 2014 11:26PM exbrnxgrl wrote:

renya,

So glad to know that you are doing well and are happy with the path you've chosen. I am very happy with mine as well. I have a fabulous oncologist who is very interested in saving my life. I had an equally wonderful plastic surgeon who did a great job on my recon. I have never had chemo either and am entering my 4th year at stage IV and remain NED. My life is pretty much as it's always been and beside myself and loved ones, no one is as thrilled as my medical team. BTW, I am the team captain ! 

Your experience worked for you and that is great. Let's live and let live, ok?

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Nov 3, 2014 01:35AM exbrnxgrl wrote:

Nope, no chemo, but I came close. I even had a port installed, which I ended up using for Aredia  for two years and now just use for blood draws snd scans. I am sorry about your hair loss .

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Nov 3, 2014 01:46AM wrenn wrote:

Renya, no treatment works for some and you were a lucky one on the right side of the odds.  i hope you stay in that group for a long time.  Saying there is no way in hell you would do what these women did is insensitive and insulting. 

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Dec 11, 2014 02:59PM quiggy wrote:

Wow TonLee, the posts are older but relevant, sane and good advice.  BC is a nightmare on a good day and most of us are struggling with the initial shock and of course, don't have medical degrees or speak the language.

I watched my onc draw out the % info and eventually drifted to a point where is was sounding like Charlie Brown's teacher (wha wa).  Couldn't help but think of a time share salesman.  I thought, gee she's done this same drill so many times that her passion has faded.  I wondered what she saw when she looked at my tear filled eyes and lost expression.  Did she even notice that I didn't understand?  Did she care?  Was she irritated because I didn't engage better?

 So, thanks for your advice on standing up.  I'm gonna practice what you're preaching!


Dx 10/22/2014, IDC, 1cm, Stage IA, ER+/PR+, HER2+

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