Stage 4 Explained

One of the hardest things to deal with since I found out my cancer came back is the fact that so many people have no idea what stage 4 means.  Heck, I didn’t even know and I had cancer! 

I get lots of responses like:

“You’ll beat it” and “You don’t look sick”

Yeah, there’s no beating stage 4 breast cancer.  It’s terminal.  There is no cure.  But people don’t understand this because they’re right, I don’t look sick.  And most days I feel pretty good.  When we found my cancer had spread and we started telling family and friends, everyone wanted to come see me and they were always shocked to see I wasn’t on my deathbed.  I looked perfectly healthy.   

The truth is this cancer will kill me.  Eventually I will look sick. 

Are you confused?  So was I.  Stage 4 cancer differs from all other stages because of the fact that treatment is aimed at extending life as long as possible by suppressing cancer growth.   Let me break it down.

Sage 4 Explained

What does stage 4 mean?

Stage 4 breast cancer means the cancer that started in the breast has spread beyond the breast and lymph nodes to an organ or another part of the body (liver, lungs, bones, brain, etc).  My cancer has spread to the bones and lungs.   Stage 4 breast cancer is also known as metastatic cancer, advanced cancer, and terminal cancer. 

If your cancer has spread to the bone, isn’t it bone cancer?

When breast cancer has spread to another part of the body it is still considered breast cancer because the cells are breast cancer cells.  When my cancer came back and it was discovered in the bones I had a CT guided bone biopsy done.  This is a rather uncomfortable procedure.  I had to lay face down on a table and stay very still.  They sent me into a machine for a CT scan so the doctor could find a bone with cancer that was easy to access.  The winner was my hip.  Still laying face down and staying perfectly still, the doctor used a syringe to numb the area then he took a very long needle with a small drill at the end and went to work.  You don’t actually feel anything until the needle hits bone.  You can definitely feel that.  The drill takes a core from the bone where the cancer is.  This was repeated 3 times.  Once the cancer sample was collected was sent to a lab for testing.  The testing tells doctors whether the cancer cells are breast cancer cells or a new cancer like bone cancer.  The biopsy confirmed the cancer in my bones is the breast cancer from my original diagnosis. 

How can you be terminal if treatment is working?

My breast cancer is the most common and treatable kind, Estrogen receptor positive.  There are quite a few different drugs that can be used in the fight against it.  The tricky part is, cancer is an evil uninvited guest that eventually becomes resistant to everything in your arsenal.  Every drug you use will eventually stop working.  My doctor describes it as a string of beads.  Each bead represents a different treatment option.  As you work your way down the beads of treatment, you take the beads off once they stop working and move on to the next one.  Eventually you will get to the end of the line.  What happens when you get to the end of the string of beads?  No more options.  This is what terminal means.  The goal of treatment is not to “beat cancer”.  The goal is to hold it off as long as possible.  This doesn’t mean I’m going to die tomorrow.  It’s important to understand that EVERYONE IS DIFFERENT.  Some people will have a huge response to treatment while others have none.  Some people live months while others live decades.  Breast cancer is unpredictable.  I don’t look sick because the chemo I’m on is doing its job and forcing cancer to retreat, but eventually the cancer will outsmart it and I’ll move onto another weapon in the fight against it. 

What comes after chemo?

No one can do chemo forever.  The goal of chemo is to get cancer under control and kill as much as possible.  The ultimate goal is NED, No Evidence of Disease.  This does not mean there’s no cancer.  When you are stage 4 there’s always going to be cancer lurking in your body.  NED simply means the chemo has killed enough that you can no longer see it in a scan.  Once we have the cancer “under control” I will have my ovaries removed and move on to hormone therapy and targeted therapy Arimidex and Ibrance.  These two drugs are taken by mouth and work against cancer from two different angle.  Their goal is to hold the cancer at bay.  Starve and kill it so it won’t grow again.  Ibrance is a new drug that was recently FDA approved last year and is showing promise in treating metastatic breast cancer.  Our hope is that these drugs will not only work (remember everyone’s different and some people won’t respond to certain drugs) but will work for a very long time! 

When does treatment end?

Never.  It will never end.  Whether it be chemo or pills, I will forever be in treatment keeping the cancer at bay.  A small price to pay to live as long as possible to see my babies grow.  If I stop treatment I give the cancer permission to infest and spread. 

But you don't look sick.

Yes, I know.  I hear this almost every single day.  It’s so frustrating to know that there is cancer feasting in my body when I look fine.  The most difficult part of not looking sick is people relate how you look to how sick you are.  I can’t possibly be THAT sick.  But don’t underestimate what’s going on in a person’s body.  Cancer that has spread to the bone is one of the most excruciating pains a person can experience.  The pain is how I discovered the cancer was back.  I was experiencing terrible rib and back pain that wasn’t going away.  It was getting worse instead of better.  I complained about my pain to 6 different doctors that just wanted to give me pills before I started doing my own research and discovered it could possibly be cancer in my bones.  Worst pain in my life, and I delivered a 10lb baby!  The point is cancer wrecks havoc on a person physically and emotionally regardless of what they look like on the outside.  There a battle going on inside…trust me. 

So how long do you have?

Your guess is as good as mine.  People are scared of this question.  They want to ask it, but they don’t of course.  I can give you all the statistics in the world like the average survival for someone like me is 2-3 years or that I have a 22% chance of surviving 5 years.  The truth is no one knows how long I have except God himself.  My oncologist did say that my initial response has a significant impact on my overall survival.  The better the response, the better the prognosis.  There are women who live well beyond what is expected and newer drugs are slowly making their way to the hands of metastatic breast cancer patients. 

What should I do to help?

The best advice I can give is if someone close to you is fighting an illness or going through a hardship DON’T BE SILENT.  This is quite possibly the most hurtful thing you could do.  Send a card in the mail, set a reminder on your phone and send a weekly text message letting them know you’re thinking of them, drop off flowers, cook a meal, set up a play date with kids, stop by for a visit and let them talk about what they’re going through,.  Brandon and I are blessed to have so many people in our lives that have shown their endless support.  It is what has kept us going and has fueled us with positivity.  Feeling loved can breath life into a person.  It can make all the difference in the world. 

A few months back, I went to church with my sister and her family.  While there, they called me to the front during the service and the entire congregation prayed for me.  This is by far one of the most spiritually uplifting experiences I have ever had.  Powerful.  A few days later I began receiving text messages from a church member named Rose.  She happened to be there that day and somehow got my number.  She has texted me religiously every single week since.  She sends me the kindest words of encouragement that I have come to look forward to and rely on for support.  A complete stranger does this.   I recently met her in person and I am forever grateful to her.  I am shocked myself by how powerful these messages have been in my life.  The point is, find something you can do and do it.  Don’t ask what you can do to help.  Chances are the person will NEVER REALLY TELL YOU.  Find something that you can do that will be helpful and is within your ability. 

I was diagnosed with stage 4 two days before Christmas.  Needless to say, it made for a very depressing holiday.  After Christmas, my beautiful and incredibly amazing coworker Kathy showed up at my house one Saturday morning with her husband and two sons and began taking down all my Christmas lights.  She didn’t ask and she didn’t knock.  They just showed up and did it. It meant more to me than she will ever truly know.  It was a total act of kindness from the heart.  She felt compelled to do it and so she did.  She had no idea that the thought of taking down my lights was causing me terrible anxiety.  Let me tell you, had she asked me, I would never have let her do it!  I would have felt terrible to inconvenience her on a Saturday.  She didn’t give me the option of saying no.  I love her for it. 

Is it oaky to talk about it and ask questions?

Yes, yes it is.  At least it is in my case.  It’s definitely okay to talk about, just be sensitive and honest.  If you have a question you want to ask, but you’re not sure it’s okay, then say that.  “Hey, I had a question, but I’m not sure it’s oaky to ask and I don’t want to hurt your feelings or make you upset”. I’ve had people come and visit after finding out my cancer is back and then not ask me a single question about it.  They’d avoid the topic like the plague, and of course, I wouldn’t bring it up either because I don’t ever want to make someone feel uncomfortable.  Coincidentally, that’s probably the reason they did’t bring it up either.  It’s OKAY to ask questions.  It’s OKAY to talk about it.  Trust me, anyone going through illness just wants you to understand what they are going through.