Knowledge

 Options, Options, No Options!

I’ve never considered myself as indecisive, but sometimes I get tired of making decisions.  At this point I can honestly say I have never made so many decisions in my life, and that my life depended on, as I have during my breast cancer.  One of the first decisions I had to make was what type of breast surgery was right for me.

You might think this was pretty cut and dry, but that really isn’t the case. Today woman have so many more options than in previous years.  There are; Lumpectomy, Partial or Segmental Mastectomy or Quadrantectomy, Total Mastectomy, Modified Radical Mastectomy, and Radical Mastectomy. And that’s not all, there are also Skin Sparing Mastectomy or Nipple Sparing Mastectomy with immediate reconstruction.  Even if you do not have cancer in both breasts, you have to decide if you are going to have a bilateral mastectomy or not. Are you BRCA1 or BRCA2 positive?

As I moved from one test to another it was like unwrapping a pretty package, each layer revealed something new.  And with each revelation, I had a tougher decision to make.  I can tell you that I read more, researched more, and prayed more during this time, than any other.  It was really hard. 

Looking at images of the surgeries was scary, but it brought some hope to me as well.  I knew I would have to have a mastectomy, so I began to research immediate reconstruction. At this point my local surgeon told us I was too young, and as my case was becoming more difficult he felt I needed to go somewhere else for my care.  This was an answer to our prayers. We really wanted a second opinion.  Not because we didn’t like what we were hearing, but because this was serious and we wanted to make sure we were making the right decision.  Through the help of my surgeon and local oncologist I was able to get into the Mayo Clinic in Jacksonville, Florida. 

Here my pretty pink package continued to unwrap.  Really I should have said that if you are diagnosed early on, you have a lot of options available to you. In my case, many of the options, well, weren’t available anymore.  I had to have a bilateral Modified Radical Mastectomy.  I couldn’t have immediate reconstruction because the size of my tumor was too large and I would need radiation.  Not that this was my first choice, but it was the only choice I could make and feel good about.

Here are a few links that share a brief explanation on the various types of breast cancer surgeries:

What is Mastectomy?
Breast Cancer Surgery Options
Surgery 

It's All Greek to Me

There are a few things in life that just completely baffle me.  Like the stock market!  Not sure why, but that totally eludes me.  I must admit I don’t really have a desire to figure it out.   Pathology Reports, well they were not far off.  When I got my first report back after my biopsy I recognized a few things and knew that couldn’t be good, but it wasn’t until I met with my oncologist (my translator), and reviewed a few books, that I could understand, for the most part, what it meant.  Even then, I remember the phone call I got from my oncologist after my surgery.  She asked me if I had talked with my surgeon about the pathology report, did I know what this and that meant.  As I sat on the other end of the line, I really hadn’t put it together the way she was now telling me.  I tried to respond with some manner of intelligence, but I am pretty sure she could sense I was thoroughly confused and thrown for a loop.

I had a local oncologist that I would see from time to time as well as my main oncologist at Mayo.  I would see her at least once a week, sometimes more.  Both of them were wonderful.  They made sure I understood what was happening and what my reports meant for me personally.  They asked me questions and expected me to ask questions.

Here is a pathology checklist I found very helpful, as well as two books that did a great job at breaking down a pathology report.

Pathology Report Checklist 

Breast Cancer Survival Manual 

Living Through Breast Cancer 

Breast Biopsies

The word biopsy can immediately evoke serious anxiety.  We’ve all heard the word before, and we usually associate it with cancer.  Well, we at least know they are looking for something that isn’t normal, and in our minds, that can’t be good. 

I am the type of person that needs to mentally prepare myself for something like this.  Birthday surprises are fun, but a biopsy – maybe not so much.   There are several different types of biopsies that your surgeon may perform to get a sample of your breast tissue, and each one is a little, or a lot, different.  Be sure you know what type before you get there.   Knowing in advance will give you an opportunity to look it up and feel somewhat more comfortable with the procedure.

I had three different biopsies done; an ultrasound guided core needle biopsy, a stereotactic biopsy, and an MRI guided biopsy.  Each of these were very different.  I feel I should also tell you all that I am a little needle-phobic, so my stress level grew from biopsy to biopsy.  All of which were performed within a few weeks. You may be wondering why I had to have three biopsies. After my mammogram and ultrasound (which were performed back to back on the same day), I was scheduled with a local surgeon to take a biopsy of my tumor.  The first, the core needle biopsy, actually bounced off the tumor and took tissue from the surrounding area.  Luckily my surgeon knew that was most likely the case and scheduled me for the stereotactic biopsy the following week.  This biopsy was successful, but with additional tests (MRI with contrast) we discovered a lump in my other breast.  At this point we were unable to see the margins clearly enough to take an accurate biopsy using ultrasound, so I was scheduled for an MRI guided biopsy. 

I could try to explain my experience with these, but I think the following web pages  and videos do a better job than I would.

Types of Breast Biopsies

MRI Guided Breast Biopsy

Sometimes You Need to See It

Self Exams, Mammograms, Ultrasound, and MRI

Early detection of breast cancer makes all the difference in the world.  Really!  The advancement in treatment is amazing, and the options available for successful outcomes are so much better with early detection.  Sadly, breast cancer in young women, women under 40, is very hard to detect because of the density of our breast tissue.  Often, as in my case, the cancer is not detected until it is at an advanced stage.

Breast cancer in women under 40 only makes up 5 – 7 % of the cases. So women under 40 often fall between the cracks.  Yearly mammograms aren’t suggested until the age of 40.  However, I must add that a mammogram for younger women is not the best tool for detection.  So having one earlier may not detect the cancer.  This is because the dense breast tissue appears as a white area – the same as a problem spot would.

My grandmother died of breast cancer at the age of 41, I never knew her, but it inspired me to be more diligent in checking myself.  I was very good at remembering to do breast self exams in the shower, and of course a clinical breast exam on my yearly physical.  Oddly enough I had felt my lump from time to time, but it would seem to come and go.  I had talked to my primary doctor about it, but she and I both concluded that it was fibroid cysts as my mother has.  Once my tumor was consistently noticeable to the touch, my doctor scheduled a mammogram followed by an ultrasound.  The ultrasound helped to get a better idea of the size and location.  My surgeon then sent me for an MRI to get an even better image.  The MRI gave a much clearer outline of the mass as well it showed a similar mass in the same location on my other breast.  This was the first time anything in my other breast had been detected.  It was not noticeable in the mammogram or ultrasound, and I could barely notice it myself even after I knew it was there.

Here again, knowledge is power!  Take an active role in early detection.  Below are a few links that go into great detail as to how and what you can do to be your own best advocate in breast health.

Breast Self Exam 

Breast Self Awareness - scroll to the bottom of page and click on "view the online BSA tool" for a very detailed video of a breast exam.

Mammograms Fact Sheet 

Emerging Areas in Early Detection

Knowledge is Power

I want to share all of the wonderful books and websites I was able to come across, either on my own or through others help.

This is the first book I received.  It was a gift from my sister's pilates instructor.  I have to say it was a good place to start.  So many things you don't even think about at the initial shock of hearing you have cancer.

Just Get Me Through This!: A Practical Guide to Coping with Breast Cancer



CaringBridge.org

When we found out about my cancer it was really hard to say the words out loud.  I had so many thoughts racing through my mind, and putting them together without falling apart was somewhat of a challenge.  For a short while we didn’t tell anyone.  It was important for us as a family to wrap our heads around what was happening, and that it was real. Once we were ready to tell our families and friends, we found it so hard to answer the same questions and tell the same stories.  My sister knew about a wonderful, free website – CaringBridge.org, this quickly became my favorite way of communicating.  It was easy to set up and very user friendly.

http://www.caringbridge.org/