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 09:49AM - edited Dec 10, 2012 10:16AM by TonLee

Posted on: Dec 10, 2012 09:49AM - edited Dec 10, 2012 10:16AM 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 11, 2014 10:14PM april25 wrote:

Ports... I'm having one put in a few days from now (Monday, 12/11/14). My surgeon will not be there... I was told "oh, Radiology can do that!" Is that true? How complicated a process is it? Gah. Hopefully I'll be asleep and not see anyone messing up!

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Being assertive is important. It's tough to have to be that way if we ordinarily don't like doing that, but with something like BC and all the procedures and treatments involved, I think it's got to be done. I've been totally stressed out trying to get things done... and I'm at one of those One-Stop-HMO-companies. You'd think it'd be easier! And they DO help with things like making appointments. And they are all nice and friendly. But, wow.

It's all a big eye-opener to me!

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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Dec 12, 2014 07:40AM bren58 wrote:

april, yes Interventional Radiology can put in a port and I highly recommend it! I had a surgeon put mine in and he punctured my lung. IR actually can see what they are doing on a monitor, while a regular surgeon goes by "feel" to get the tubing in place. Somewhere on these boards is a detailed description of port placement. You will probably be asleep for the procedure.

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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Dec 12, 2014 08:18AM sophie14 wrote:

Good morning ladies .. I had my port put in on Monday. My surgeon put the port in and did a sentinel node biopsy , I was asleep thank goodness. They took a xray afterwards. I have no cancer in my lymph nodes. I am so thankful for that . AMEN ! I start chemo on December 16. I have been so scared too. It all seems like a bad dream that you can't wake up from. I try to stay busy, but the emotions take over sometimes. There is a lot of information on some of these post from very nice women on this journey. Starting treatments in December is a good wall. Take care.

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Dec 12, 2014 07:48PM - edited Dec 12, 2014 07:49PM by april25

Bren58 -- Good to hear another thumbs-up for radiology doing the port!

sophie14 -- My surgeon refused to do an SNB with my Port placement!!! She suggested it face-to-face, but then said later, in emails that KP's policy doesn't allow SNB unless it's done with breast surgery and I am doing neoadjuvent chemo!!!! GAAAH... why is it so hard to get treated properly!???? So, no SNB for me until after Chemo... but I think I'm leaving these doctors behind and getting a new team after all this trouble...

I'm glad everything went well for you!

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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Dec 13, 2014 09:41AM sophie14 wrote:

  • April, my surgeon told us the SNB can tell them a lot about the cancer and what stage it is. My cancer is stage 2a , clear lymph nodes. But because it is HER2 positive 3+ over 2 cm I have to have chemo. The goal is tor the chemo to shrink the mass or the mass disappears. That means the less he will have to remove and that makes him happy. I have a hard time with if there is no lymph nodes with cancer why can' t they just take the breast off. Then the surgeon and MO tell me I may have tiny cancer cells floating around my body so I have to have chemo. Sometimes it sounds like they contradict themselves. I know I have to trust them but it's not so easy to do when I am so scarred. The MO said said if the breast is removed without chemo I would have a 70% chance of the cancer not returning. If I do chemo I have a 85% chance of cancer not returning. I know there are no guarantees with cancer ...
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Dec 13, 2014 07:07PM Blownaway wrote:

sophie14 - I asked my doctor if I had both breasts removed, could I skip chemo. The answer was no. I just had a lumpectomy.

Dx 3/31/2014, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+, Surgery 5/13/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/3/2014 Lumpectomy: Left Chemotherapy 7/3/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/3/2014 Herceptin (trastuzumab) Radiation Therapy 10/7/2014 3DCRT: Breast Hormonal Therapy 1/10/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast
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Dec 14, 2014 12:50AM - edited Dec 14, 2014 12:54AM by april25

They told me I was going to have to have chemo no matter what I did. So I asked if I could have it first because it might shrink my 3cm tumor and kill the stuff that might be running around my body... and because Perjeta was supposed to help Herceptin work, and it was best done neoadjuvently. It took me a long while to decide what to do: chemo first, surgery first, add Perjeta or not, etc. It seemed like the surgeon, MO and 2nd opinion thought chemo first was good, so I'm happy with that.

It also lets me put off decisions about the surgery! I still don't know what will happen. Maybe my tumor will shrink and all I will need is a lumpectomy. Or maybe that won't work and I'll have to do something else.

I also didn't have much choice about radiation. All the doctors I saw said I'd probably have to have it, so I guess that's it. I don't have a strong reason to refuse, since I haven't heard that it would be a good idea to refuse! Both MO and outside 2nd Opinion were pretty much in agreement, except for adding the Perjeta, which I was all for, which was recommended by my 2nd Opinion and with which my MO agreed after he saw the 2nd Opinion letter. I was glad to have the 2nd Opinion because it mostly backed up the MO, but also suggested other things that the MO had not originally recommended.

--Yeah--there are no guarantees! We just have to try and figure out the best treatment and hope our team is good and can handle changes if other things pop up! I'm hoping all will go well. Why not? We can't know the good or the bad until it happens. That's why I'm trying to stay away from statistics.


--------

From the original post... I have a really BAD Cop in my sister, who is the only close relative I have left (I'm single, no kids). This is both good and bad, but mostly good, because she really has my best interests at heart and she knows a lot more than I do about medical stuff. I've never really dealt with medical things aside with having to take some meds for Type 2 Diabetes, hpb and chloresterol in recent years, so I'm a total newbie in all this!

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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Dec 14, 2014 04:50AM quiggy wrote:

Hi April25;

Sorry you have to deal with all this.  It can be so overwhelming.  Doing research like you are, is an important part and for me, helps to conquer the fear. Sounds like you're doing a good job of empowering yourself.

I agree with you, the statistics that all the doc's keep pushing at us are confusing.  impersonal too.

Good luck with the chemo., let's hope that damn tumor shrinks!

(((❤))) your BC sister Quiggy 

Dx 10/22/2014, IDC, 1cm, Stage IA, ER+/PR+, HER2+
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Dec 14, 2014 05:02AM april25 wrote:

quiggy -- Oh, I'm sorry you have to deal with this, too! You're only about a month ahead of me. But that month is a big month with a LOT of learning being done, I'm sure! (I'm coming up on a month since diagnosis and to someone without bc I seem like a walking encyclopedia on it--but I really know only a fraction of a fraction!)

I'm lucky that the doctors aren't giving me too many stats. Mostly just the positive ones. But they are giving me lots of mixed recommendation for what tests and scans and surgeries and meds... Not TOO mixed... most are in agreement, but some aren't, so it is very tough to know what to decide sometimes. Hopefully they are all presenting ideas that at least won't be BAD! So I guess, pick what sounds good and go with it! Second-guessing just makes me crazy (although it's hard not to do that!)

Anyway--looks like the different choices are narrowing down a bit as I will soon be starting chemo... From there, I guess it's just trying to manage things. After Chemo come some more decisions about surgery! I'm not looking forward to that. But hopefully I'll have some good choices...

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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Dec 24, 2014 07:05PM quiggy wrote:

April25;

Hoping you're managing ok with the chemo.  I wanted to let you know you're in my thoughts. 

Not sure about others, but the holidays have been difficult for me. Too many tasks, too many people to deal with.. Too much when we don't feel good.  I went to the cancer center at the hospital yesterday for radiation consult and cried most of the way there and at least once during the 2-hour process.  What the heck!!!  No reason to cry!

Anyway, your BC sisters are here if you need to vent or whatever.

(((💓))) Quiggy 

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

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