Sharing my Story on LIVESTRONG

My breast cancer story was shared this week on the LIVESTRONG blog and social media accounts! A little surreal to see it out there but very cool.

Here's the link:  https://blog.livestrong.org/sharing-my-breast-cancer-journey-a56f6392278

Be sure to check out their website....tons of great resources and info!

Can you spare a nipple? My Surgical Oncology Consultation

It's Monday, Jan. 30th, and I have known for under a week that I have Stage 0 DCIS (confirmed by biopsy).  Today, I met my wonderful Surgical Oncologist, Dr. K. for the first time.  He was just as great as I had been told.  Here's how it went....

After a ton of paperwork....get used to that....I met with the nurse practitioner.  After reviewing my history, she did a quick physical exam before Dr. K came into the room. Typically, Dr. K would have gone over my diagnosis and treatment options in detail...he is often the first person most cancer patients talk to after their diagnosis; however, I had the benefit of having met with the Breast Center Navigator the week before.  This made my visit a little easier and we could pretty much go straight into my surgical options.  He confirmed that no chemotherapy would be called for with Stage 0 DCIS, but that radiation would be required if I chose the lumpectomy route.

Here were my options again (in case you missed my last post):

Option 1: Lumpectomy followed by 5 days/week x 6 weeks of radiation and 5 yrs of hormone suppression medication (leading to menopause symptoms).

Option 2: Left (unilateral) mastectomy and reconstruction followed by 5 yrs of hormone suppression....no radiation.

Option 3: Double mastectomy and reconstruction ....no radiation, no meds

My thoughts:

Option 1:  With a lumpectomy, there is always the possibility that a cancer cell will be left behind.  This is why radiation is necessary.  The thought of having the cancer come back in the same breast or in my other one is scary.  I also did not want to go through the radiation (and all of its side effects) required with a lumpectomy.  The hormone suppression therapy would come with all of the fun of menopause symptoms too.  

Option 2: Once again, the hormone suppression therapy is required in order to protect the right breast that is left behind.  And, again, there is the possibility of breast cancer recurrence in my unaffected breast.  

Option 3: No radiation...no hormone therapy...no more mammograms....no more breast tissue.  While the initial recovery is longer and it is definitely more intense, the outcome would give me the least amount of recurrence risk.

For me, I felt that even the smallest percentage of risk for recurrence was too much for me. 

This included the less than 4% risk included with saving my nipples.  In order to do a "nipple-sparing" procedure, a small amount of breast tissue is left behind....meaning that there is a little something left for those pesky cancer cells to come back to.  Again, not worth it to me and after seeing the amazing work that can be done with plastics and tattooing, I am not at all concerned with losing the nipples too.  

After Dr. K reviewed the statistics for each of the 3 options and then he said to me:  "I will advocate for you whichever option you choose. I will be on your side."  Those are powerful words to hear from anyone, but especially helpful from the physician who is going to be trying to save your life.

After having spent the last week doing my own research, Dr. K was able to confirm what I knew and give me additional info specific to my case.  In the end, I felt very comfortable with my decision and signed consent for a Bilateral (a.k.a. Double) Skin-Sparing Mastectomy with Sentinel Lymph Node Biopsy and possible Lymph Node Dissection.

Image from https://www.cancer.gov/about-cancer/diagnosis-staging/staging/sentinel-node-biopsy-fact-sheet

Because if the breast cancer was going to spread, it would spread via the lymph nodes, a sentinel lymph node biopsy will be performed at the start of my surgery.  The evening before surgery, I will go to the Radiology department of the hospital to have a radioactive tracer dye injected into my lymph nodes.  On the morning of surgery, Dr. K will use this to determine which lymph node is the FIRST one from the cancerous lesion...the sentinel lymph node.  He will remove this node and send it for an immediate biopsy.  If it is clear, he will proceed with the mastectomy as planned.  If it is positive, he will have to remove more lymph nodes for a dissection and further biopsies.  Obviously, this will change my prognosis significantly, as well as my treatment plan.  

There are lots of things to consider as you are making the choice for yourself. Take the time to review all of the info and to research each one.  

The only negative about the appointment was finding out that Dr. K was not going to be available on the date the Breast Center Navigator and I had discussed, so my surgery would likely be later.  Not like this was devastating news or anything, but any extension on the process seemed like forever.

My next appointment was going to be with the Plastic Surgeon, Dr. O, in 9 days.  Assuming things went well with him, the two offices would compare calendars and get me scheduled for surgery.

Still felt surreal leaving that office and the next 9 days went slowly.

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy
01/24/17  Biopsy results positive...Stage 0 DCIS, left breast
01/25/17  Meeting with Breast Center Navigator and Genetic Testing
01/30/17  Consultation with Surgical Oncologist, Dr. K

Treatment Options & Genetic Testing

So, here we are on 01/25/17....I was diagnosed yesterday with Stage 0 DCIS in my left breast.  Today I am heading to the Breast Center to meet with the Patient Navigator and the Genetics Nurse for Genetic Testing........

In the Breast Center:

A mastectomy pillow (goes under your arm) given
to me at the Breast Center.

I arrived at the Breast Center and was greeted by the Breast Center Patient Navigator, "A". She was very sweet and very knowledgeable.  Please be sure to check with your facility to see if they offer this assistance.  It is very helpful, especially in the beginning to have someone who knows the ropes to guide you through all of the information, appointments, and help you choose the best physicians for your treatment.

"A" started by going over my biopsy results in detail and discussing what it meant.  I had researched some online the night before based on our previous telephone conversation, so by the end of our talk, I felt like I had a thorough understanding.  We discussed my treatment options next.

For me, Stage 0 DCIS, does not require chemotherapy.  No chemo...this was good news.
It does require surgical intervention though because left untreated, DCIS becomes invasive and can spread.  "A" assured me that all 3 of my surgical options were good and produced positive outcomes for patients.  

Here's how my options were laid out:

Option 1: Lumpectomy followed by 5 days/week x 6 weeks of radiation and 5 yrs of hormone suppression medication (leading to menopause symptoms).

Option 2: Left (unilateral) mastectomy and reconstruction followed by 5 yrs of hormone suppression....no radiation.

Option 3: Double mastectomy and reconstruction ....no radiation, no meds

Additionally, if the latter two, there is implant vs natural tissue reconstruction.

All of these would be discussed in further detail with the Surgical Oncologist. My Surgical Oncologist would be the one to provide the statistics on the options, but "A" said that none of them would be "wrong".  This is most definitely a personal choice.  

We also discussed the physicians in the area and the ones that the Breast Center recommends.  I had already been told by several friends and coworkers that Dr. K was the absolute best for Surgical Oncology. "A" confirmed this and started working on setting me up with an appointment the following Monday.  "A" told me that I would hear from her or Dr. K's office to confirm my appointment.  She also recommended a Plastic Surgeon (from the group I had already heard about from friends) who works closely with Dr. K and is excellent with the natural tissue reconstruction option.  She would work on getting me an appointment with his office, as well.  She was anticipating that I could have surgery in just under a month...around Feb. 23rd.

I was then introduced to the Genetics Nurse, "E".  "E" explained the testing process and had several charts to show me how it worked and what the results would entail.  Most people have heard of BRCA 1 & 2 testing (thanks to Angelina Jolie), but my test would cover 28 genes.  The genes being tested would cover not only my genetic predisposition for breast cancer, but for 8 different cancers.  This was the one I took:

It was a simple saliva test...basically spitting into a test tube....a lot of spitting!  
We discussed what the findings would mean for my family....like the fact that regardless of the results, my niece should start getting routine mammograms at age 30 (instead of 40) just because she now has an Aunt with breast cancer.  Results would be available in 7-10 days.

I left the office with a ton of information swirling around in my head!  So many numbers and details.  This is one of those times, you want to have something to write things down on (or another person to take notes/listen).

It's all a bit overwhelming, but I felt good after my appointment.  Again, for me, this all signified a working, active, plan...things were moving in a positive direction.  I spent the rest of the day and evening updating family and friends and reading about the surgical options online.

I encourage you to be proactive if you have received a breast cancer diagnosis. 
Arm yourself with information and don't hesitate to advocate for yourself.  
Ask lots of questions!  
Write everything down and start a folder or file to keep all of the paperwork you will gather along the way...there is a bunch!  

Please feel free to comment or to ask questions if there is something you'd like to know more about.  I'm happy to share anything that might help you in your journey.

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy
01/24/17  Biopsy results postive...Stage 0 DCIS, left breast
01/25/17  Meeting with Breast Center Navigator and Genetic Testing

The Life-Altering Phone Call

My biopsy was Friday, 01/20/17...this is Tuesday, 01/24/17.  I was told that biopsy results would be in 72 hours, but figured that Saturday and Sunday wouldn't count.  I tried not to think too much about it over the weekend and just took it pretty easy.  I worked Monday and Tuesday.  I was a little bruised at the biopsy site and still had steri-strips in place, but the only things that really bothered me was my bra rubbing on the site and the swelling causing my scrub top to irritate my inner arm.  Of course, my coworkers and family were asking about my results, but I was trying not to count on them until Thursday.

I'm a NICU nurse.  A typical routine for our patients is an every 3 hour feeding schedule. This shift I had 3 patients...0800, 0830, 0900...1100, 1130, 1200...etc.  I was mid-way through my second round and decided to walk a dirty bed to the cleaning area while milk was warming for my little patient.  My phone was in my pocket.....needless to say, every time it vibrated that past week, I had jumped.  This time was no different.  I felt the vibration and when I looked in my pocket I recognized the extension from my OBGYN's office.  I jumped into the supply closet next to where I was standing and took the call.....time stood still for a moment.

My long-time OBGYN told me he had my results....he didn't make me wait or ask, thankfully.  His words were: "It's the best of the worst diagnosis, Julie."  I was informed that the biopsy showed Stage 0 DCIS....ductal carcinoma in situ.  He went on to briefly explain that this was "the good kind" and that the Breast Care Navigator would be in touch to walk me through this new journey.

It wasn't a long phone call....but it was life-altering.  

In that moment, 

standing in a supply closet in the middle of the NICU, 

I became a cancer patient....a woman with breast cancer.  

I walked out and just started pushing the dirty bed down the hall. While I was in the empty cleaning area, I quickly dialed my mother and told her what little I knew.  She would inform my Dad and Granny since I was at work.  I asked her to wait and let me tell my son when I got home.

Then, it was back to my pod and time to get back to work.  It didn't feel real and I definitely think I was in a bit of shock, even though I thought I was prepared for this possibility.  My two coworkers were working with a patient when I returned with the news.  They both immediately said: "Do you need a minute? Do you need to go?"   My response was something like: "I better not....I think I need to just keep moving.  And, the babies need to eat."

The baby was bottle feeding that round and took his time...I remember sitting there and just re-playing the phone call in my head.  One of the gals asked me what I was thinking and I just said: "I have breast cancer.  That's really weird to say out loud."  

Within the hour, the Breast Center Navigator called me and we scheduled a meeting for the next morning.  She gave me a little more information over the phone and let me know that I qualified for genetic testing and that I could complete it the next day too.

My lesion...~3cms located at 1:00, 5 cm
from the nipple on my left breast

At the end of the day, here's what I knew:

• "In situ" means "in place". This means that the cancer is usually contained where it is found and Stage 0 means that it appears to be non-invasive.
• DCIS is furthered contained in the milk ducts.
• I would meet with the Navigator the next day at 09:00 to review everything and start making plans and appointments. She would help me with surgeons and appointments.
• Because I am 40 with breast cancer and have a grandmother with a history of uterine/ovarian cancer, genetic testing would be offered, recommended, and should be covered by insurance. It would be completed at 10:00 the following day.
• Most likely, the MDs would offer me three options: lumpectomy, unilateral mastectomy, or double mastectomy....details to be discussed the next day.
• I would need to talk to a surgical oncologist for lumpectomy or mastectomy and a plastic surgeon for reconstruction. 

My son took it well that night. Calm and cool as usual. He gave me a big hug and told me it was going to be okay.  Pretty sure I didn't sleep that night but a few minutes here and there. No tears, just a lot of praying and thinking.

It was a lot to take in, but I actually felt better knowing...as crazy as that sounds, it was better than wondering and waiting.  

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy
01/24/17  Biopsy results postive...Stage 0 DCIS, left breast
01/25/17  Meeting with Breast Center Navigator and Genetic Testing

Biopsy Day

Let's go back to last month again...still trying to get y'all caught up to present day.

Friday, Jan. 20, 2017....Biopsy day.

This was all brand new...they had just found the lump/lesion/whatever two days ago. My parents insisted on coming.  My friends also offered. This is kind, but not necessary (unless you need/want that).  You are a little sore afterward but not so much that you couldn't drive home.  

On that note:  You will be told A LOT of information at ALL of these appointments. It can be a bit overwhelming and there are details you will want to remember.  Most people will recommend that you always bring another person along with you...someone who can help you remember what was said or take notes for you.  This is something worth considering, but not something I did or plan to do.  I prefer to handle personal stuff myself.  I do always have something to write on with me just in case I want to take note of something.  In my job, I'm used to a bunch of info being thrown at me at once and the medical stuff isn't a problem for me.  If this is not the case for you, then definitely take someone with you as a second set of ears and/or take notes.  The first couple of appointments consist mostly of information gathering and they will give you statistics on your diagnosis, prognosis, your treatment options, etc.

Back to the biopsy......

I arrived at the Breast Center and was taken to a dressing room where they had me change into one of those pink half-gowns...only covers the top.  I was able to leave my jeans and shoes on.  I was told to wait in a small waiting area where I sat on a couch watching the news coverage of President Trump's inauguration with another patient. When it was my turn, I was taken into a room that looked kind of like a dentist office....big reclining chair in center.  The tech started with another ultrasound.  It made me a little nervous because she was only concentrating on my armpit....lymph nodes!  I finally asked if this was different than my previous US.  She replied that Dr. M wanted a closer look.  GULP...I didn't say anything else. I just prayed this was okay.  The previous Radiologist had told me two days ago that the lymph nodes looked clear.

A few minutes later, the wonderful Radiologist Dr. M walked in. She was super friendly and fun.  We had never met at work, but she sometimes reads the X-rays for our tiny patients.  We chatted about that a bit while she continued with the US imaging of my left armpit.  She apologized for making me nervous but explained that the previous report did not label a couple of things and she just wanted to be totally sure of the anatomy before she started.  She then turned the monitor to show me my lymph nodes and the surrounding vasculature, etc.  

Don't be afraid to ask your doctor to do this...ask him or her to point out what things are and what they are looking for.  You might not be able to really "see" it like they do, but it helps to have a better idea.

She then began to explain the biopsy procedure, how she would do it, and showed me the clip/marker they would be leaving behind.  They leave a clip (the kind they use in heart surgery) at the biopsy site so that if there is any question later, they know exactly where the tissue samples came from.  This clip stays in there forever...or until surgery, if that's the treatment route you take.  It is MRI safe and you won't set off alarms at the airport. 

The chair was reclined and a towel roll was used to prop up my shoulder so that I could leave my arm at my side rather than have it above my head the whole time...that was nice.  She numbed the area with Lidocaine...I felt the first couple of needle pricks but nothing much after that.  She told me that she could numb more if I needed it.  I never did.  

My biopsy was a core needle biopsy.  The needle is hollow so that when the outer sheath is "punched" it cuts the specimen into the hollow core to be withdrawn.

Dr. M explained that she would take at least 6 tissue samples to be sure that she got a good amount of the lesion.  

The lidocaine numbs the sharp pain, but you will still feel the "punch" every time. It wasn't painful, just a little weird.  It sounds like the click of a hole punch or a staple gun.  We carried on a conversation about work and the terrible traffic in the area and it was very much like a dental visit....not painful, but not something one looks forward to.  When she was done, she placed the marker inside and then held pressure for a few minutes to stop the bleeding  at the site.  The techs dressed the spot with gauze, steristrips and then a pressure dressing on top.  I was told to leave that on for 24 hrs.  I could shower and pat dry.  The steri-strips were to stay on for about a week.  (You may be surprised when they come off to find that all that to-do is for an incision the size of a large freckle.)

This is the biopsy site a month later...looks  like a freckle.

Afterward, they took me down the hall for a couple of mammogram images. She was very gentle and did not press the plates down as much as a typical mammogram.  Once the Radiologist ensured that the images showed that the clip was in place where she wanted it, I was free to put my shirt back on and go home.  I was told to keep an ice pack on the site for the rest of the day.  The whole visit took maybe an hour and a half, including waiting room time.

The ice pack is very helpful!  The biopsy site felt like a bad bruise...like you got hit hard there.  The next day after running a few errands, I found that I was sore again and used the ice pack.  My left breast was swollen afterward for about a week.  There was some mild bruising but nothing too bad.  The only thing that bothered me were my bras....the underwire was terrible. I dug out my softest bras and had to wear them for a couple of weeks because everything irritated that side of my breast.  Even, the seams of my scrub top made me crazy for awhile.

Dr. M informed me that their goal was to have the biopsy results to my OB-GYN within 3 days.   I was off of work for the weekend, so I pretty much just took it easy and tried not to think about the results.  I figured that the weekend days probably didn't count in the 3 day result timeline, so there really wasn't any point in getting my hopes up for results until probably Thursday.  

For me, the biopsy was a step forward and getting it done as quickly as I did was a relief.  I'm finding that the waiting is the hardest part on this journey....and there seems to be quite a bit of that.  Patience is a virtue though, right?

MY TIMELINE:
12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy

They Found a Lump??!!??

This all began with my very first routine screening mammogram on December 22, 2016.  Nothing out of the ordinary...never felt anything...just the "you're 40 now and need a mammo" mammogram. The tech was very friendly and explained everything she was going to do.  She also explained to me that as a first timer, I would not have anything for the radiologist to compare to so I shouldn't be surprised if I received a call back asking for more images.  She assured me that most of the time it was nothing. 

Sure enough, I received a call back within a few days asking me to come back for more images.  The imaging center couldn't get me in for almost a month....I figured that definitely signified that this was nothing to worry about.

On January 18, 2017, I went back to the imaging center. The plan was to be in-and-out in under an hour because I had lunch plans with some girlfriends that afternoon.  I walked in and the same tech was in the room. As she was setting-up, she started explaining how they just wanted images of my left breast.  This was the first twinge of nervousness I felt. After the images, she had me wait saying:  "I'm just going to show these to the radiologist.  If he is okay with them, you are free to go.  If he wants more, you'll get an ultrasound."

Within a few minutes, another tech came and got me for an ultrasound.  "Ummm....so...he saw something?", I asked.  She responded: "Oh, yes, we want a closer look. But, don't worry, Dr ____ is great about talking to patients.  He will come in when we are done and talk to you."

I tried to act cool, but I was feeling a little confused.  The room was darkened and I was told to lay on the table with my left arm above my head.  She rolled the wand all around my left breast concentrating what seemed like forever on my armpit.  As a nurse, my mind started clicking away at everything I knew about lymph node locations.  I could not see the screen where I was positioned so I stared at the ceiling while the speaker played "Hotel California". I remember thinking what an odd song that was for this office.  Anyway....

Moments later, the radiologist walks in.  He takes my hand in both of his and gives me this very sad and concerned look........pretty sure, my heart stopped for a moment.  

Long story short, he told me he found a 3cm lesion that was "very unusual in someone my age" and "very concerning" and "needs to be biopsied and removed" and "it's VERY concerning" and  then the two-handed handshake again and "I'm so sorry."

I was further informed that a biopsy appointment would probably take 2 weeks and results another week after that. But, he threw in "it's a slow growing kind, so it's okay. Don't worry".  It didn't seem "okay" to me, but everything was a bit foggy at the moment and i really just wanted to get outside.

I made it out to my car.  I shakily picked up my phone and called my mother....the tears started before she answered and it took me a few minutes to gain control.  She called my Dad who turned around and called me right back. My girlfriends insisted that I still needed to come to lunch.  Within a couple of hours, my brother and grandmother knew and my OBGYN (my referring physician) had called me because he had received a message from the imaging center.  

I picked up my son after school and told him the news.  He is 14 and such a calm, even-tempered kiddo.  His response was quiet and full of wisdom:  "Well, Mom, there's nothing worrying is going to do.  All we can do is pray and trust that it'll be okay.  You're young and healthy, it'll be fine."  He was right about the worrying, of course,  but it is definitely easier said than done.

That night, I posted what had happened on Facebook asking my friends and family for prayer support.  Needless to say, I didn't sleep much.  The next morning I got up and went to work in a fog.  As soon as the Breast Center opened, I called to get scheduled for a biopsy. They were busy and were not sure when my report would be read and approved by the radiologist.  There are many blessings in my job as a nurse....one being the close proximity to the Breast Center, the physicians, and being a part of the hospital family.  My friends helped me (and thanks to a patient who cancelled), my biopsy was scheduled the next day.  

Immediately, a small sense of relief washed over me.  I'm a planner.  If I have a plan, I can deal. Now, a plan was forming....get the biopsy, get the results, get moving.

My amazing coworkers rallied behind me and sent me home that night with a sweet card and a goodie bag of snacks, candy, a candle, puzzle book, etc.  I am so blessed to be back "home" in my NICU.








I'll tell you what to expect with the biopsy (or at least how mine went) in a separate post.
For now, GO GET YOUR MAMMOGRAM!!

Ready for the biopsy....get used to pink gowns, you wear them a lot!

MY TIMELINE:
12/22/16  Routine Screening Mammogram
01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy

My Journey...Why Share Here?

As I am beginning my journey with breast cancer, I have been doing a lot of research and reading online. The most helpful websites and YouTube videos were written not by doctors or Breast Cancer organizations, but by the actual women going through it.  In many ways, I think it is as therapeutic for the author as it is helpful for the readers.  For that reason, I decided to post my journey here.  If no one reads it, that's okay. But, if it helps another woman on her journey, then that is great!

First of all, every woman's journey is different.  There is more than one kind of breast cancer and lots of treatment options.  Everyone deals with the diagnosis, the treatment, the process, the recovery, etc. in his or her own way.  I was told in my first meeting with the Breast Center that I had to make decisions that I could live with...that I could live with.  That's important because people have a lot of opinions and some of them will want to share those with you.  Most of them are doing it out of love and concern, so try to take it that way, but remember that this is YOUR journey.  

I'm an advocate for educating yourself. For me, I've sought guidance from my physicians and done a lot of research myself.  I also have the benefit of being a nurse and working in the hospital setting.  Seek out friends and family who have been through this.  Many women have reached out to me....I was surprised how many of my friends have been through this themselves.  1 in 8 actually seems low once you start talking to people. 

As a nurse, I'm not squeamish and actually appreciate the sometimes brutal honesty of surgical photos/videos.  That's not for everyone, but I was glad to have found that there are a few women out there who have been willing to share the not-so-pretty before and afters.  I'm still undecided on how much of that I'll share here, but for now, I'll try to tell you my story as it unfolds.  I'll be honest...even if it isn't pretty.

Feel free to comment and ask questions.