Save the Boobies? How About Save the Women!

At the intersection of Stage III and Stage IV breast cancer, wondering which way the road will go...

Editor's note: The following piece was written by Wildfire contributor Dana Dinerman. It was originally posted to her blog, dcurve, and republished here with her permission.

Photo by Stock Shop Photography LLC/iStock / Getty Images
Photo by Stock Shop Photography LLC/iStock / Getty Images

          I sit here today on what is known as metastatic breast cancer awareness day, I feel the lump in my neck starting to disappear. I wonder about the other spots from the PET/CT Scan, if they too are either gone or if they are smaller. A scan in a couple of weeks will show what my fate will be when it comes to make a decision on which road I will take.

Is this my life now? How did this happen?

If I think about that or ask myself these questions I become quite scared and feel like my life is about to come to an end.  I decide to not focus on those questions each day, instead I focus on how I feel and what I need to accomplish.

How do I say that I am metastatic? I have not been able to say that quite yet and in fact have told people that I don't believe I am... perhaps I am hanging off of a cliff and looking down into the dark depths of the metastatic abyss.

Does this mean death if I do make that last fall? One more notch up on the totem pole of breast cancer stages?

Unfortunately it is the final stage, one we all fight to not want to stand upon.

Yet, there are many women who do stand upon this stage. They are mothers just like myself, wives, sisters, daughters, best friends, bosses, teachers, girlfriends....the list does go on. They rely on medicine to keep them alive for months and years to come. They search the news for new research or maybe clinical trials that may be opening up that could possibly pertain to their status, however that is the problem.

The research we walk for or raise money at the ‘pink’ parties hardly ever hits this stage. The money goes to raising awareness for future women who may become diagnosed.

I agree: awareness is key. I have done my checks and did them before having breast cancer. In fact a check helped me find my lump in my breast. However, awareness for becoming diagnosed with Stage IV breast cancer is very necessary.

According to METAvivor, an organization who raises funds solely for metastatic research: 30% of women who have been diagnosed with early stage breast cancer will become diagnosed with Stage IV.  

How do we help this 30%? We need to fund research and groups dedicated to making Stage IV/metastatic breast cancer a chronic condition.

I now have a chronic condition, as my doctor told my husband. In order for you to understand what this means, I would like to tell you my story. I was diagnosed at age 34 with Stage III breast cancer. I have no family history and I was not at risk for developing this disease for any reason. I was a young mom when I found out, my son just turned one and I was preparing to have another child so he could have a sibling. I remember finding the lump one afternoon while relaxing at home. I felt a twinge of pain in my breast bone leading to the outer part of my right breast. I rubbed from the breast bone towards the area and felt a hard lump. I remember pausing and thinking, how did this get here?

I was breastfeeding, however I was in the later stages of breastfeeding so for a hard lump to have developed from lactation seemed strange. I had my husband check the lump (he is a general surgeon) and he seemed concerned.

We went to have the lump checked by ultrasound and I was sent home with the confirmation it was due to breastfeeding and to keep an eye on if it grows.  

A month or so later I went back to have it checked again and this time I was not told to go home and not be worried: I was told a biopsy was necessary and immediate. I remember being in that room with a couple of the nurses sobbing. 

One of them took my hands and said to me, “It is a small lump, it will be early stage.

I felt comforted by her words but little did I know that this is what I would keep hearing from everyone as each test was performed and as each test was completed my stage would go up.

Finally as I was teetering on stage III, which means it had reached my lymph nodes under my arm. I was thinking to myself, this is it, I am on death's door if we go up one more time.

We had one more test, the PET Scan. It is a scan that shows if the cancer has spread beyond the lymph nodes and into distant areas in the body, which would mean metastatic. I held my breath when we got the call for the scan. It was clear.

I felt like my life was renewed and I would be alive and well to see my son have his own children. That is, until I read one day on a page about breast cancer that it can indeed come back. In fact, the chemo I was taking at the time could possibly not work.

How could this be?

I was killing myself to stay alive, putting toxins in my body that sometimes left me lifeless for days yet they may not work?

Well I did complete the six months of treatment and as I was recovering I would discover a hard lump in my neck. I was at dinner with my husband, having a date night out when I went to rub my neck and felt the hard lump.

I knew instantly it was cancer.

We asked the waiter if we could get the check even though we had not gotten our food yet. We told him we had an emergency. I did not want to eat my meal; I wanted to run outside and keep running down the highway.

It had returned and quite soon too.  

We got our biopsy results the same day I was cheering on the Susan G Komen 3 Day Walkers walking by my house. I was holding up sparkly pink signs saying, "Thank You!!" I was also ringing a bell (my hulabelle which would unfold a new path for me later on).

The results showed the cancer had returned only in my neck. This is called  a regional recurrence which still put me in stage III since it had not spread to my organs or bones. I was again relieved and felt like I had another chance at life until the ENT surgeon told me that he was not able to operate.

I felt numb, sitting on the couch.

What do you mean you cannot remove the lumps in my neck?

He told me that the lumps were in a tight spot and by the time my neck would heal from the surgery I would probably have cancer in other parts of my body. He said I needed medicine and I had more of a global issue.  I was terminal. I kept thinking to myself, I was incurable. If the medicine did not work before how was it going to work again?

I went to my oncologist and he had a mix of drugs for me, one of which was the controversial drug Avastin which the FDA stopped approving for breast cancer due to many risks. I was quite skeptical the meds would work and thought my life was over. But I started the treatment plan immediately and soon the lumps were melting away. I was shocked. The meds could work and maybe I would be saved again!

We had another PET Scan and it showed NED and I was put on a hormone drug and sent on my way.

Well, just this past couple of months, about four years later roughly, I have been re-diagnosed with another lump in my neck and small nodules under my arm, in my chest wall, and in my lungs. The doctor has yet to call me metastatic although it has been toyed with since we are not sure if the spot in my lung is cancer since it is too small to biopsy. We are back on the same meds from before and so far it is working again.

Yet, what happens after this treatment?

I had four years the last time and my doctor said to me he is not sure the oral med I will be switched to will work.

Do I have to go back on chemo again? Will they run out of drugs? Will I want to give up? Will my body give up from all the wear and tear?  

This is the road of someone who has to deal with cancer in their life.

It is not a party, it is not glitter and ribbons, it is not about saving the boobies.

This is about saving a life.  There are many women like myself who are living their lives, relying on different meds since cancer is a smart bastard and it can change at any moment.

We need endless amounts of options, we need research, we need help.  

So, I now have decided to wage a war on metastatic breast has killed too many women in my life. It has been tormenting too many of my friends and survivor sisters. We are going to save the women...will you join me and save the women with me?

Because if you do you might be saving my life.

By Dana Dinerman. Swimwear designer, fashion trend writer and stay at home mom. Find Dana's beautiful post-mastectomy swimwear line at Hulabelle.