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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Jan 27, 2013 11:22AM shadytrake wrote:

Hi all,

Thanks for this thread. I too had a resident "practice" on me for my biopsy. I had never felt that kind of pain. I still hurt today and it was on 1/16.

I'm allergic to codeine and derivatives so getting pain medicine w/o narcotics is very challenging. I can take Tramadol w/Benadryl but it doesn't work that great after a procedure.

I'm going to push for Morphine for after my lumpectomy like I did for my DaVinci hysterectomy. That recovery was so fast and pain free.

I'm also going to make sure an actual surgeon is doing the surgery. My breast is just too sensitive.

Dx 1/17/2013 Surgery 1/29/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/1/2013, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Dx 2/14/2013, DCIS, Stage 0, Grade 3 Chemotherapy 2/18/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 27, 2013 07:56PM TonLee wrote:

Shady,

That is a great point.  When I had my Ooph, there was a resident assisting.  At first the resident told me she was the primary.  I politely declined, advocated for my OB to be the primary, and then had them put it in writing.  lol

For some reason, (another lesson I've learned the hard way), when things are "in writing" hospital staff seem to take it much more seriously.

When I refused axilla dissection, THEY put it in writing and had ME sign it...lol.

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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Jan 28, 2013 07:12PM shadytrake wrote:

They called today to make sure I'm all set for tomorrow so I asked if Dr Fine is performing the surgery. I told them I did not want a resident. They said that he is doing it and there won't be a resident in this surgery. Maybe he doesn't have one right now.

I'll reiterate this to them tomorrow am. 14 hours to go. I hate waiting.

Dx 1/17/2013 Surgery 1/29/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/1/2013, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Dx 2/14/2013, DCIS, Stage 0, Grade 3 Chemotherapy 2/18/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 28, 2013 09:35PM TonLee wrote:

Great Shady!  Good luck!

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 1, 2013 04:35PM TonLee wrote:

Bump for a friend :)

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 16, 2013 07:46AM Kamalot wrote:

I started treatment for bc on Jan 19th 2013; was diagnosed on Dec 24th, 2012. Every 3 weeks I receive TCH and then every Monday I receive just the Herceptin. Apparently my oncologist says 4 months for chemo or 6 cycles as she called it. Does anyone know if the cycles get worse at time goes on.  Does the chemo build up in your system? After 4 months of chemo I'm suppose to get surgery to remove the hopefully smaller tumor and lympth nodes too I believe.  As you can tell I don't know much about this whole cancer thing.  No one in my family ever had it; so I am at a complete loss and terrified.

With a total of 5 yrs treatment chemo/surgery/chemo/radiation then herceptin every 21 days for 1 year and some type of pill for 5 yrs after that is what I was told. Sop I'm approaching cycle 4. The bone pain in pretty bad after I get the Neulesta shot; does anyone know to take to make it a little more comfortable? Thanks all...wish we were meeting under different circumstances though of course. Thanks for listlening

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Mar 16, 2013 11:53AM Maureen1 wrote:

Welcome to the forums ((Kamalot)))...we know how you feel, you've just been blindsided by this diagnosis, there are so many questions and so few answers right now - I know it's hard to believe but it will get better. We know the fear you are feeling...yes, it is so overwhelming but we're here for you...You will find the answers to many of your questions in the posts on the "newly diagnosed" boards so I am putting that link in this message, check it out and post your own questions there as well and you will find lots of caring and supportive responses.

http://community.breastcancer.org/forum/5

There are also boards with great advice for those of us going thru chemo. I just finished chemo on Dec. 26th of 2012. I found so much wisdom and good information from the long term survivors who had gone thru it before me. I had every 2 week cycles - it was called "dose dense" chemotherapy so it built up between cycles. At the end of chemo the side effects gradually fade, they don't go away quickly but they steadily decrease so I have a few things that I am still dealing with but it's not bad at all. Hang in there...(((Hugs))) Maureen

Dx 7/31/2012, IDC, Left, 1cm, Stage IIA, Grade 2, 3/11 nodes, ER+/PR+, HER2- Surgery 8/6/2012 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 9/19/2012 AC + T (Taxol) Surgery 3/4/2013 Prophylactic mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/19/2013 Aromasin (exemestane) Hormonal Therapy 7/22/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/23/2013 Reconstruction (left): Silicone implant
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Mar 16, 2013 04:46PM - edited Mar 16, 2013 04:47PM by LeeA

Kamalot, are you triple positive (ER+, PR+, HER2+)?  If so, you might want to check out this thread: 

Triple Positive Group: 

http://community.breastcancer.org/forum/80/topic/764183?page=541#idx_16229

 

Since you started chemotherapy in January you might also want to check out this thread (the January 2013 chemotherapy thread).  Additionally (and in case you're interested) there's a Facebook group associated with the January chemo thread linked below: 

http://community.breastcancer.org/forum/69/topic/797712?page=93#idx_2783

 

I started TCH (Taxotere, Carboplatin and Herceptin) on January 2, 2013.  I had the first dose of Herceptin as a stand-alone dose on December 12, 2012 because my chemotherapy treatment was slightly delayed due to an infection in the tissue-expander in my non-cancer breast.  

Regarding bone pain following Neulasta:  have you tried taking Claritin prior to and after the shot?  Many find success with this protocol.  I have been following it and have been fortunate not to experience the long bone pain that some have described having post-Neulasta.  

As far as being terrified goes - yes, I agree completely - it is very scary but I have found that interacting with others who have either gone through it before or who are currenty going through it makes it a lot less frightening.  The two threads I posted links to above are very active and you will find all kinds of support, advice and camaraderie. 

 

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 17, 2013 03:33AM Keke713 wrote:

Hi ladies! I'm from March 2013 Chemo group...I'm 27 yrs old and was diagnosed on Jan 23rd with IDC grade 3, stage 2, triple negative . I underwent a bilateral mastectomy on March 1st...I go in on the 22nd to have my port placed, and my chemo treatments start on the 25th. Oncologist ordered 4 rounds is AC followed by 4 rounds of Taxol...I am so nervous to start this chemo and would love if you ladies could give me detailed realistic information on how it affected each of you...and also information on the port placement. I have this obsession with knowing everything possible whether its good or bad...knowing what to expect has helped me so much! I read the good, bad, and ugly about my surgery before having it, and I'm thankful I did because this whole process ended up being a lot easier that I expected...I'm healing well, and doing a lot more than I thought I'd be able to...but please , as much info, good or bad, I'd love to hear all your stories!! Thank you!!!!

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 03:39AM LeeA wrote:

Keke, I just replied to you on the January chemo thread.  Re: port placement - mine was relatively easy.  It did require general anesthesia but it didn't take very long and it has been very easy to access for treatments/blood tests.  I wish it didn't stick out as much as it does but it is what it is and it's a lot easier than having IVs set all the time. 

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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