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What Metastatic Breast Cancer Really Means: Beyond the Pink Ribbons

Sep22

When people hear the words “breast cancer,” most think of pink ribbons, survivors ringing bells, and five-year remission celebrations. That’s part of the story—but it isn’t the whole story.

There’s another side of breast cancer that doesn’t get talked about enough: metastatic breast cancer (MBC), also known as stage 4. This is the kind I live with. And it’s very different from the pink ribbon version you usually see.

What Stage 4 Really Means

Metastatic breast cancer happens when cancer cells spread beyond the breast and lymph nodes to other parts of the body—most commonly the bones, lungs, liver, or brain. At this point, it’s no longer considered curable. Treatments focus on controlling the disease, managing symptoms, and giving patients as much time—and quality of life—as possible.

That’s the blunt truth: there’s no “end of treatment” for metastatic breast cancer. There’s no ringing the bell and moving on. This is a lifetime diagnosis.

The Myths vs. Reality

Myth 1: You only get stage 4 if you didn’t catch it early.

Reality: Metastatic breast cancer can happen even if you were diagnosed at stage 0, I, II, or III, went through treatment, and were considered “cancer-free or NED, no evidence of disease.” Sometimes cells lie dormant for years before resurfacing.

Myth 2: With enough positivity or strength, you can beat it.

Reality: Positivity can help your outlook, but it’s not a cure. MBC isn’t about “fighting harder”—it’s about living with an illness that medicine hasn’t yet figured out how to stop permanently.

Myth 3: Stage 4 means you’re immediately on your deathbed.

Reality: While MBC is terminal, patients often live years—sometimes many years—on treatment. Advances in medicine mean that some people can manage it more like a chronic illness, though it’s still unpredictable and relentless.

Why Awareness Matters

Pink ribbons raise billions for breast cancer research and awareness—but only a small percentage of that goes toward metastatic breast cancer research. And yet, MBC is the only stage of breast cancer that kills.

Awareness matters because:

We need more research. Treatments are improving, but there’s still no cure. Patients need support. Our journeys look very different from early-stage survivors. We don’t get to “move on.” Caregivers need recognition. They’re living this life alongside us, often silently.

When people understand what metastatic breast cancer really is, they can better support patients, push for research, and help shift the narrative beyond pink ribbons and survivor slogans.

Living Beyond the Ribbon

For me, living with stage 4 means making peace with uncertainty. It means celebrating good scan results, mourning the life I thought I’d have, and finding joy in unexpected places. It means showing up honestly—because awareness isn’t about fear, it’s about truth.

Beyond the pink ribbons, there’s a whole world of us living with metastatic breast cancer every day. And we deserve to be seen, supported, and remembered.

Closing thought

If you know someone with stage 4, don’t be afraid to ask how they’re really doing. And if you want to help, look for organizations that provide support and/or funding for research, not just awareness campaigns.

Some organizations you should look at:

Metavivor

Friend for Life

Cancer Support Community – Gilda’s Club

Derby City Dragons. If you are looking for a dragon boat team in your area, please reach out and I can help you find one!

Check. regularly as I will add more information.

Fatigue No One Sees

Sep18

Here’s the thing about fatigue with stage IV cancer: it’s not “I stayed up too late last night” tired. It’s not “I just need a nap and a coffee” tired. It’s bone-deep, soul-sucking exhaustion that no amount of sleep, vitamins, or positive thinking can fix.

And the kicker? It’s unpredictable.

Just because I wake up feeling halfway decent doesn’t mean I’ll still feel that way by lunchtime. I can say “yes” to something with every intention of showing up — then my body pulls the rug out from under me, and suddenly I’m on the couch with zero energy, nauseous, and mad at the world. It feels depressing because I want to go, I plan to go, and then… I can’t.

That’s the hardest part: not being able to trust my own body. I used to be a planner. I thrived on calendars, commitments, and being the person who always showed up. Now, week 4 of my Ibrance cycle is basically the Bermuda Triangle of my life. Energy goes in, but nothing comes out. I know better than to schedule anything major then — but life doesn’t stop for my blood counts. Showers, birthdays, dinners, family things… they don’t care what week I’m on.

And then comes the guilt. Backing out feels disrespectful, like I’m letting people down. But here’s the truth: I’m not disrespecting anyone — I’m protecting myself. This isn’t about being flaky, it’s about survival.

I’ve had to redefine what “showing up” means. Sometimes it looks like dropping off a gift even if I can’t stay for the party. Sometimes it’s sending a text that says, “I’m with you in spirit.” And sometimes it’s choosing to stay home, rest, and save what little energy I have for the scans, infusions, or just getting through the next day.

Do I like it? Absolutely not. Do I grieve the old me who could plan without hesitation, commit without fear, and follow through every time? Every single day.

But here’s what I’m learning: showing up doesn’t always mean being there in person. Sometimes showing up means honoring what my body needs. Sometimes it means loving people from a distance. Sometimes it means letting go of the guilt and reminding myself — I’m not lazy, I’m not unreliable, I’m not disrespectful. I’m living with cancer fatigue, and it’s okay to say, this is all I have to give today.

And honestly? That’s enough.

Questions people ask part 1

Jan2

So I was having a conversation today with a fellow MBC (Metastatic Breast Cancer) friend. We were talking about how people don’t know what to say because they have no idea what all this cancer stuff is about. People think that 1. All cancer is the same – you get it you die or you are a “survivor/warrior” and nothing short of a miracle has happened because you “beat” it.

Well let’s start with the first thing. Is all cancer the same?

For sure it’s absolutely NOT!

I know nothing about other cancers so I’m only going to stick with what I know. And right now that’s breast cancer. Note that I truly only know about my own. There are so many variants on breast cancer that it would be an entire dissertation to try to explain them all!‘I’m going to try to keep it super easy!

There are many different forms of breast cancer. Ducal vs. Lobular. ER/PR+, Triple Negative, HER2+/-, invasive, non-invasive, situ, bio markers, stages, grades, metastatic…and the list goes on. So everyone can have any combination of these things. So before you have the person or yourself written off as dead, you have to know the characteristics of the type of cancer. Different characteristics respond differently to certain drugs. For example Aromatase inhibitors work very successfully with ER/PR+ (estrogen receptor/Progesterone receptor) This is because ER/PR+ cancers feed off of hormones. Other cancers such as Triple negative are harder to treat most of the time because there are not as many drugs available.

Most of the time when people say they are Stage 0-2, they have an excellent chance of full recovery because this is considered early stage cancer. And in some circles they say Stage 0 is not cancer but a pre cancer. It’s when you get to State 3 that things get a little tricky. At that point the cancer has spread to lymph nodes from the breast. Now, surgery, chemo and radiation are typically prescribed. (Not always in that order! In my instance I had to do chemo first because we had to shrink the tumor and get it away from my chest wall before they could remove it) Sometimes after treatment there was a rouge cancer cell that somehow evades treatment. Kind of like koi in the winter…that pond is frozen and they somehow bury themselves to protect from the elements. When this happens and the cancer cells move to other parts of the body such as bones and organs, it is then considered metastatic. As Stages 0-3 are treatable and has the potential to be cured, Stage 4 is not. Once you have been diagnosed with stage 4 it is not longer curable. There are treatments that can slow the growth of the tumor. There are treatments that shrink the tumor. There are even treatments that may put the cancer in remission. So you really have to know the severity of the cancer based on a lot of different factors as mentioned above.

Does this mean that if someone is diagnosed with breast cancer they are going to do in like 3 months?

Unlikely. If you are in the early stages (0-2) you will probably live your life out and all is good. Now are there exceptions where early stage ends up NED (no evidence of disease they don’t say cured any more…that’s another blog post) and then a couple years later it comes back Stage 4. Sure does. But it all depends on the features and treatment plan.

I put stage 3 in this no mans land. I had stage 3. Some studies and doctors consider stage 3 early stage but others consider it late stage. Evidently stage 3 has a better chance of returning, especially if it is lobular. Lobular breast cancer is a sneaky bugger. They like to hide from screaming and it’s not the classic pea sized lump you hear about. I know people with Stage 3 who have been around for decades, and I know those who it came back pretty quick.

Now lets talk about Stage 4…the death wish. When people hear you have stage 4 breast cancer they feel sorry for you, they look at you like they have pity on you because they know you are going to die “soon.” I remember when I was first diagnosed there was a lady in our support group who was diagnosed with stage 4. Everyone was afraid of her. I mean this was a group of breast cancer people! But everyone treated her very differently than everyone else. I myself even felt that way. Like what do you say to someone who is going to die “soon?”

“Soon.” Let’s talk about the timeline. Again, this depends on the features the cancer has taken on. Sometimes when the cancer moves from the breast area to other parts of the body it morphs and changes. I may have been hormone driven, but now that it has traveled to other parts of the body, it has taken on different characteristics. This requires the doctors to re-evaluate the situation and come up with a better more appropriate plan.

What does this mean? Well the person with stage 4 could live for months, years, or decades. It all depends on how it is responding to treatment.

The one thing to keep in mind with people who have been diagnosed with Stage 4 breast cancer is they think the same thing you do! They have it going through their mind that they have weeks to live and panic. They are scared because there is a lot of unknown in the beginning. There is a lot of waiting around and worrying. The oncology team comes up with what they think will be the best course of action based on all the factors from the tests of the biopsy. They have a roadmap. If the first treatment isn’t responsive or stops working after a while, they go on to plan B. So rest easy that your team will take care of you the best they can for what is available for the type and characteristics of your cancer.

The best think you can do with someone who has been diagnosed is to treat them the same way you always have. But understand that they are scared, confused and every other emotion out there. So they may not want to make solid plans with you. They may not want to make any plans at all. This is because they have no idea how they are going to feel from one day to the next. It is a roller coaster of emotions and how you feel. If you think it is impossible to keep up with try being person who has been diagnosed! It’ll make your head spin! Please be patient and understanding. And know that the will probably be around for a few years.

Radiation Explained.

Sep28

I was going to start out with “I had radiation today” but then was like…duh, you have radiation every day!  I was thinking about how they do it and started to freak out about frying my lungs and heart and stuff.  Now I know they went over everything with me but they didn’t have pictures.  So I went in today with all my questions.  When you walk through to the treatment room you pass this console and it has your pictures on it.  So I stopped and looked at the CT scan of my chest.  There are all sorts of lines and things written all over it.  So I finally asked them to explain how this works for real.  So When they draw the lines on me it marks the area they are administering radiation…the line divides treatment into it two separate parts.  I was thinking they were doing the whole area to the right of my dots over my chest in the back too.  So the first zap is to the back under the arm to get to the backside of the lymph nodes. The second zap is to the front of the same spot to get the front of the lymph nodes.  The third zap they change the machine and put a pad on my chest and move the machine in closer. This zap is the one that gets where the tumor was. It doesn’t go as deep but it concentrates with the help of the padding.  So it doesn’t go deep enough to hit my lungs or heart. If it does it’s very minimal.

So here’s my awesome drawing to explain what they are doing for radiation. (I’m making a fist with my right hand there so back up off my hands!)

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PT and the Lymphatic System

Sep8

Had Physical Therapy today. Making good progress.  I’m almost there! But I had asked the burning question: “What ARE my odds of actually getting lymphedema.” This is something I’ve been kind of scared of since before surgery. According to my physical therapist she didn’t want to say my chances were good or bad. It’s all dependent on making sure I keep my left arm from getting injured or not keeping my skin healthy. She explained to me that we typically have more lymph nodes than we need.  Because I had so many removed I may have just enough or less than I need. This makes the others work harder and sometimes lymph nodes that never had to do anything now had to work for a living. The way it works is if I have a hang nail or other injury on my left arm or hand the white blood cells attack to make things better first. Then after they die off the residual left over from the injury is then circulated through the lymph system to clean out. Because I have had so many lymph nodes removed, it is important to not put extra strain on them.  If there is too much stress it backs up the lymph system and causes it to back up.  This causes the swelling and what is called lymphedema.

I asked about flying and if that is going to be an issue.  She told me that in the past it was a concern because things were not quite understood.  People would get the compression sleeve for the flight to prevent any issues but in reality they were finding they were causing the problems. So she told me if I was going to fly to just make sure to not eat anything overly salty and make sure I keep moving my arm to keep the flow going.

I never really thought about the skin factor.  She said it was important to make sure that I keep my skin from getting overly dry.  This can cause the lymph system to work harder. Who knew!  I also asked what I can do to help the old lymphatic system out. And she said the obvious and previously stated injury free and skin care, but also to massage and rub the arm and chest towards the heart. This helps keep everything moving.

And that is yet one more thing I learned today….whoo hoo!

Pooka Glossary

Sep8

I love this!!!  A must read for all the warriors.  Thank you Iridacea for this!  AWESOMENESS!I have been realizing that some things that are obvious to my household are just not part of the lexicon of others. Here is a little explanation- I will add more per your request or when I notice something questionable here on Pooka Ride.

For more go to:  Pooka Glossary

Battle And The Amazon Warrior

Aug21

If you do not want to see what a double mastectomy scar looks like stop now!

People do not like to see the reality of breast cancer. Everyone sees happy pictures on Facebook and how everything is going right in the world.  While that happy face is on, what lies beneath is sadness and anxiety and very mixed emotions about one’s sexuality and overall appearance.  What lies beneath is the secret that keeps some cancer patients from feeling feminine or desirable.  People automatically think you will just get reconstruction and the world will be better.  You will have those perfect perky breasts before you know it and no one will be the wiser.  But for some of us we can not have Amazzone_ferita_-_Musei_Capitolinireconstructive surgery for months or years after our procedures.  We can not wear prosthesis right away.  We have to live with and face the raw reality every single day.  And to much of people’s surprise there are even some women who choose to never have the reconstructive surgery.  For myself I can not tell if I will feel differently in the future, but for what I went through with this surgery, I feel no real need right now to go under and have surgery to help boost my ego and make people around me more comfortable.  I am getting to the point where I am starting to feel comfortable in my own skin, battle wounds and all.  This is how I feel today. There is no telling my feelings a year or two from now.  But I have learned to accept myself as I am right now and not worry too much of the future and what others may say or feel.

With that I’m posting a picture of the battle wounds.  If you do not wish to see them then don’t look.  I am not embarrassed by them. I am empowered by them. The Greek Mythology of Amazons states that they were a tribe of female warriors that mostly fought with a bow and arrow.  When girls became of age to fight, they would remove their right breast to not impede their archery skill.  (Yes I will be taking up archery as soon as I’m healed)  So the Real Wonder Woman only had one breast!

I don’t look at this as a weakness…I look at it as a strength all 24 scars large and small I have accumulated from this. NOW I am proud to call my self a warrior!!

 

 

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The Chest of a Warrior