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 24, 2014 07:26PM april25 wrote:

quiggy -- Thanks so much for your thoughts! I certainly wish all the best for you, too!

I've started my first round of chemo and it was OK for the first few days, but then totally kicked my butt. But today I'm feeling a bit better, so maybe I can recover enough for the next round.

Awww... this is an emotional thing we're going through, so a few tears are not surprising! I hope you can make it through the holidays and try to get enough rest and time for yourself. I'm sure those around you would understand. Don't be afraid to get the rest you need. Your loved ones will probably feel better being able to help you out (because it can feel like they are helpless a lot of the time, I'm sure they'd want to help).

The radiation sounds like no fun, but everyone says it is not too bad. Hopefully you'll breeze through it with no side effects!

Take care. You are getting through a lot of the really scary bits! I hope you're feeling better!

==April

Dx 11/19/2014, IDC, Right, 3cm, Grade 3, 0/2 nodes, ER+/PR-, HER2+, Targeted Therapy 12/15/2014 Herceptin (trastuzumab) Chemotherapy 12/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/16/2014 Perjeta (pertuzumab) Surgery 5/8/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/9/2015 Whole breast: Breast Hormonal Therapy 9/3/2015 Arimidex (anastrozole)
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Apr 13, 2015 08:13PM lrm2647 wrote:

Sorry Tonya, I started at page 1 and read page two. I'm just starting dealing with BC again. First time 1996 at 35. Back then 35 year olds didn't get cancer. So 19 year survivor from round 1. Another post brought me to read your post of 'what i wish i knew' just to get prepared. Then I saw you were from OH. So really just stopping in and saying HI from another OHIOAN, (southeast of Cleveland). I see now it looks like your going through it again. Wish you the best. I'm sure I'll be on the boards for another year or two like the first time even though that time wasn't too bad. Just needed the support and loved to give support once I was done. Then really just needed to get it out of my life because it wasn't doing me good. Glad this site is still available after 20 years because it was my lifeline the first time. I still have printed posts in my drawers from back then. One that gets me everytime is, 'Well you can get hit by a bus tomorrow'. Boy that was a great post back then. Hate that people think this is so easy and so what, they can die tomorrow too. Yep like that post talked about, well you don't see the bus coming but I already do and can't do much about it. Don't know how bad I am at this point. Just got electric copy of biopsy path report, it isn't good but also only a couple days after biopsy report, so not a lot of info. But bad enough. Invasive ductal grade 3, invasive mixed grade 2-3 and metastatic adenocarcinoma. So was just here trying to find some stuff info before DR appointment and came across your post. Need to go back searching, so I couldn't read everything here. Best of luck!!!

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Apr 14, 2015 11:11PM Jerseygirl927 wrote:

I'm, sorry your back, just popping thru, I got a chemo bag together, which is what I learned here, it's very important in the scheme of things, I am always adding to it, and using it too. Was very helpful for the possibilities that can come up. Healthful eating, positive attitude, and use your faith.

Surgery 1/13/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 1/14/2015, ILC/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ Chemotherapy 2/26/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Hormonal Therapy 5/30/2015 Femara (letrozole) Dx IDC, ER+/PR+, HER2+ Dx ILC, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+
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Apr 16, 2015 05:39PM TonLee wrote:

Irm2647,

I am so sorry for the recurrence. That stinks.

So far I haven't had any recurrence...hope I make it 19 years out like you.

Best of luck. Keep us posted.

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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Apr 16, 2015 07:57PM Cmo65 wrote:

Irm, I just wanted to say I'm sorry about the recurrence and hope for the best for you.

Christine

Dx 3/9/2015, IDC, <1cm, Grade 1, ER+/PR+, HER2- Surgery 3/16/2015 Lumpectomy: Right Surgery 3/16/2015 Lymph node removal: Right, Sentinel Radiation Therapy 5/11/2015 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 24, 2015 04:31PM Stage3 wrote:

  1. I understand what you are saying. My oncol is basically a know it all. Probably because she is in a great cancer hospital. That being said does not make her know it all. It's your body and if feel something is wrong speak up. I ran a low grade temp for 3 weeks got worse each day. It was ignored to finally I went at her and said something is wrong dontvu think we need to test. She did a bladder culture showed positive for ecoli which now on Cipro temp gone. Don't think that doctors are Gods they are han and make many mistake
Dx 3/4/2015, IDC, Left, Stage IIIA, Grade 3, ER+/PR+, HER2+ Chemotherapy 3/27/2015 AC Hormonal Therapy 5/25/2015
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Jul 21, 2015 09:51AM farmladync wrote:

Thanks for sharing this . I have been recently diagnosed with triple negative . Had my surgery April 13 , 2015. I have found the medical community is all about the money . Very disheartening . I don't plan on having any treatments unless God would change my mind . Too many after effects and I think it's basically poison because it destroys all your good cells.

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Jan 11, 2016 09:06AM - edited Jan 11, 2016 12:52PM by ginnydeering

I just found out I was misdiagnosed at the biopsy stage. The test results from the biopsy showed triple positive, with a HER2 of +3, and my oncologist started me right in on neoadjuvant chemo of Herceptin, Perjeta and Taxotere, which I finished and then had a mastectomy of my left breast. My surgeon also removed all of my lymph nodes on the left side of my arm. During surgery, however, the analysis of the cancer that had gone into one of my lymph nodes tested HER2 negative. The original biopsy test was performed at a diagnostic center close to my home, but I was sent to another hospital in a larger city. This hospital has an excellent reputation and I felt very comfortable in their care. When I was told about the discrepancy, I asked my oncologist to re-test the original biopsy (the term for that material is "blocks") and he said he would, but was not super excited about it. My breast surgeon, however, was on it immediately and also sent all samples to an independent lab for confirmation. The results showed that the original biopsy was incorrectly diagnosed. They mistakenly found the IHC test to be +3 (on the most positive side of the scale) so they skipped the FISH test. If they had done the FISH test, they would have questioned the IHC test. Unfortunately, no one along the line questioned the HER2 +3 diagnosis without a FISH test and I had an unnecessary round of chemo. I am now looking at a new round of 2 months of bi-weekly chemo for the correct diagnosis, followed by 5 weeks of radiation, 5 days per week. Given my correct diagnosis, I should have had surgery first and then chemo, followed by the radiation. Moral of the story: Get a second opinion of the biopsy to confirm breast cancer sub-type. I would never have imagined this possibility when first diagnosed, as the concept of breast cancer was so daunting. I hope this helps someone.

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Feb 5, 2016 06:25PM whoknows wrote:

My Darlings.

Thank you all for sharing. All this time I was made to think it was just me. I'm just a horrid human being and the looks I get from the staff are well deserved. SO NOT TRUE!

I had a lumpectomy in 8/2014 and am currently having a recurrence in the same spot with lymph node metastasis. I'm not through my PET/CT scans yet so I don't quite know exactly where I'm headed next.

I have the best surgeon in the area, but the office support staff is the same as any other. You really have to watch them. I wish I had someone managing my care for me so I didn't have to make the follow up phone calls to insurance, radiologists or whoever to be sure the surgeon's staff sent the correct referral forms.

You all know the drill, I'm sure. Let's just hope this year that no machines break mid procedure, like I had happen last year, and the staff is generous enough not to lie to me or try to play CYA when it does.

One specialist asked me why I didn't like the first specialist I'd been referred to. I had a feeling she may have thought me prejudiced on certain levels. I explained to her that I had never met the specialist in question and that sometimes you don't make it past the office support staff.

I'm trying to spare you the horror stories but at one point it got so bad that I left my doctor's office and took myself to an Urgent Care Center. They helped me immediately, after 5 days of my politely trying to get help from my own doctor.

Best wishes to you all and thank you again, so very much, for sharing this thread.

cb

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Feb 5, 2016 11:57PM quiggy wrote:

Hi cb1504,

Truly sorry you're facing this again. You know this is a safe place so let us know what you need. A shoulder, to vent, to cry, to laugh, some input... whatever.

It's your journey, screw those who make it about their feelings. We know to well that it's common for doctors to ignore, dismiss and belittle us.

Hugs my sister

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

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