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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Mar 17, 2013 03:45AM Keke713 wrote:

Thanks..I think I'm doing a lot of freking asking myself out..it's jut so hard BC once I come to terms with one thing, the drs throw something else at me...is never ending! And since you've lost your hair, what is it like going out in public, I'm sure you get stares..but do you get people asking you questions? See I think of so many questions in the matter of minutes! Lol

Dx 1/23/2013, IDC, 2cm, Stage II, Grade 3, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 3/25/2013 AC + T (Taxol)
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Mar 17, 2013 10:56AM LeeA wrote:

Keke, yes, at the beginning it feels like there's a cascade of news - and not much of it all that good.  

Re: hair - I have two wigs (one long/one shorter), a halo wig (to wear beneath hats), several Buffs (Link: www.buffusa.com/sports/) and a stack of beanies/ski type caps and a few hats.  I never go out without something covering my head.  

I am not completely bald but about 99% bald and it's not a good look. 

Re: questions - ask away - it's the only way to start feeling on top of the situation. 

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 1/2/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 7/30/2013 3DCRT: Breast, Lymph nodes Hormonal Therapy 10/10/2013 Arimidex (anastrozole)
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Mar 23, 2013 11:13AM grover wrote:

Loretta,
I'm fairly new to this, just getting primary diagnosis in January myself, but even with 2 different types of bc (triple neg. IDC grade 3 in rt. w/1 lymph node involved, triple pos. grade3 IDC in left, no lymph inv.), my surgical onc. told me the best studies showed no dif. in success rate for modern treatment btwn. lumpectomy w/ rads & mastectomy...She could not recommended one over the other, I would have to decide what I'd feel most comfortable with. What a choice! But I do have confidence in her. Obviously I don't know all the specifics of your diagnosis, but I would definitely get other opinions! I have been amazed at the differences in people's treatment plans I read these posts! I am going to a renowned university cancer center and have been very impressed with the thoroughness, honesty, and methodical approach to my treatment. Every practitioner has given me as much time and attention as I've needed, and the presence of residents and interns and their roles has always been announced ahead of time, and the repetition when residents and attendings came in seperately was actually clarifying & helpful. Most of the time I have questioned (which I just do naturally bc I want to understand EVERYTHING), it has actually only resulted in a change or correction with nurses(: I have always had DH with me, & sometimes mom as well. But I will def.keep all this great advice in mind!

Surgery 1/17/2012 Lumpectomy: Right Dx 1/2013, IDC, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2- Dx 2/2013, IDC, Stage I, Grade 3, 0/0 nodes, ER+/PR+, HER2+ Surgery 2/28/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/28/2013 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/2/2013 AC + T (Taxol) Hormonal Therapy 6/7/2013 Aromasin (exemestane) Radiation Therapy 10/7/2013 Breast, Lymph nodes Surgery 12/19/2013 Prophylactic ovary removal Surgery 4/17/2014 Reconstruction (right): Tissue expander placement Surgery Reconstruction (left): DIEP flap, Nipple reconstruction; Reconstruction (right): DIEP flap, Nipple reconstruction
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Mar 27, 2013 01:46PM Skagitphoenix wrote:

LisaBug, I too have been keeping everything from my family. I even managed to have 2 biopsies performed without my kids suspecting a thing. It was incredibly hard because the numbing medication didn't work. I am now over a week out from the biopsies & still have major pain & am running a fever. When I received the results and met with my oncologist, I decideded it was time to tell my family. It was awful, but they needed to know.

Dx 3/15/2013, IDC, 1cm, ER+/PR+, HER2+
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Mar 27, 2013 04:18PM placid44 wrote:

Loretta,

A very recent study found that in some women (see article at link), lumpectomy plus radiation had better survival than mastectomy alone. I've seen oncologists quoted saying that it is worth further review, but it has not changed the standard of care since it is just one study. For years doctors have believed the two have equal survival.

I did a bilateral mastectomy plus radiation, but I had a different case from you.

http://www.cbsnews.com/8301-18563_162-57566311/mastectomy-or-lumpectomy-new-study-could-help-women-decide/

Ki67: 70%; beltwaybreastcancer.blogspot.com Dx 8/20/2012, IDC, 3cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Chemotherapy 8/29/2012 AC + T (Taxol) Surgery 2/12/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/26/2013 Breast, Lymph nodes Surgery 11/25/2013 Reconstruction (left); Reconstruction (right)
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Apr 12, 2013 11:31AM shawntez wrote:

Hello Ladies! New here and to breast cancer, posted as much as I know for now regarding my diagnosis and treatment plan. Just start AC chemo 3 weeks ago and started losing hair earlier this week. I have a long road ahead and hope to arm myself with as much information and support as I can get.

Dx 2/25/2013 Dx 2/25/2013, IDC, 2cm, Grade 2, ER+/PR+, HER2+ Chemotherapy 3/27/2013 AC Targeted Therapy 6/18/2013 Herceptin (trastuzumab) Hormonal Therapy Chemotherapy Taxol (paclitaxel)
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Apr 12, 2013 02:26PM TonLee wrote:

Welcome Shawn

I see you are triple positive.  Please join the triple positive thread for great info!

http://community.breastcancer.org/forum/80/topic/764183?page=561#idx_16815

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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Aug 21, 2013 03:18PM IrishDancingMom wrote:

Thanks for this!! I'm a softie and you gave me some tools to work with to get what I need and want when I start my treatment.



Thanks

Love is all you need..Beatles Dx 8/9/2013, DCIS, 3cm, Stage 0, Grade 3, 0/0 nodes, ER-/PR-, HER2- Surgery 8/23/2013 Lumpectomy: Left Radiation Therapy 9/30/2013 Breast
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Aug 21, 2013 03:24PM - edited Aug 21, 2013 03:26PM by specialk

This Post was deleted by specialk.
BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Jan 27, 2014 03:13PM next40 wrote:

Thank you for this statement. I just recently was diagnosed and was referred to an oncologist, but the staff are absolutely unbearable to deal with. Each has an agenda from beyond the walls of the medical facility. After days of calling, asking questions and receiving nothing but rudeness (one returned phone call the nurse called me but when I answered she did not hear me say hello, she sighed heavily and uttered thru her teeth the word stupid) I decided it was time to fire that group and move on! You have confirmed what I kept asking myself "who is the star of this rodeo?!?!" ME --- I just didn't understand the behaviors.  Shouldn't they just know to be nice? No one is asking them to cry, worry or care - just don't be mean.

Dx 1/9/2014, IDC, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 2/25/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left

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