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Stage IV - As told first hand by a survivor!

October 11, 2017

I asked one of my best breast friend to tell exactly as is, her story about how she found out she was stage IV. Many people do not understand the different cancer stages, others see stage IV right away as a death sentence, but it is not always the case. 

 

"My life changed in so many ways on Oct 21, 2014. On that day I got the phone call that I had breast cancer. I was not very surprised. I found the lump myself several weeks before on Oct 3rd. I had been doing some yard work and felt a pain in my right rib, a rib I had fractured years before. I was feeling around because something wasn't right. It did not feel like a broken rib and I had not done anything that I thought would cause a break. Upon further investigation I found a walnut sized lump in my breast very close to where the rib pain was. I went outside and sat on my hammock. I began talking to God. So what is this lump I have found? Clearly He said it was cancer. We continued for a while about how He could use it for good and how I was not in control and so forth. I went a few days before I told my mom and my husband. A few more days and then I called my doctor. I went in for a quick check and my doctor scheduled a mammogram and ultrasound. That lead to a biopsy which lead to the phone call.

 

So I was diagnosed with Stage IV, Triple Positive, Invasive Ductal Carcinoma with a metastasis to the rib and 3 spots on my liver. I had no idea what any of that meant, but I would soon know that and so much more than I ever wanted to know about breast cancer. Let's break it down. Stages run from 0-4. Stage IV means that I have the worst stage, cancer has spread and there is no cure. Triple Positive. There are many types of breast cancer and they are labeled by three different hormone receptors in the cancer cells as either positive or negative. These are Estrogen (Er), Progesterone (Pr) and Her2neu (Her2). The last one is actually a protein found in the body and not a hormone. So triple positive means that all three of these tested positive for receptors in my cancer cells. I was told by my oncologist that the cancer was probably growing for less than 6 months when I found it. This shows you how aggressive of a cancer this type is. Now Invasive Ductal Carcinoma means that the cancer tumor is spread out (not contained in a nice little ball) originating in the ducts of the breast and carcinoma just means cancer tumor. So there you have it, I have a terminal, aggressive and invasive cancer living and growing in my breast!

 

I have been dealing with the recurrence of the breast tumor for a while now. Since I was diagnosed stage IV, I have had to continue to get a maintenance chemo every 3 weeks. The first recurrence was one year after completing the first big course of chemo treatments. I was not doing my self breast exams because I was getting scanned every 3-4 months keeping an eye on the liver and rib and watching for any new spots to show up. I was in my bedroom one evening in February 2016 and I heard God clearly tell me to do a self breast exam. I questioned if I actually heard correctly. After all, I just had a stable scan a month prior, but gave in to doing one anyway. Sure enough the breast tumor was back.Now this next part is not to scare you or cause you to doubt doctors, but to demonstrate how you have to be very active in your medical care. You cannot just sit back and take every word the doctor says as truth. Unfortunately, medicine is not a specific science and humans are involved. Even all the technology we have is not perfect and is being improved on every day.

 

So, I found the lump. Immediately my oncologist orders a mammogram and ultrasound. I am calmly told by the radiology doctor that it is just scar tissue. Now, being stage IV at diagnosis, I did not have a lumpectomy or radiation following chemo to cause such scar tissue. Yes, you can get scar tissue just from chemo, but it would be minimal in comparison to surgery and radiation. At my next appointment my oncologist confirms that the report says it is scar tissue. I voice my disagreement with that diagnosis. More time goes by and nothing is being done and no one is listening to me and believing what I think is going on. Finally, I get through to my breast cancer nurse navigator that I am upset and strongly disagree with this diagnosis. She gets me an appointment with my surgeon. Immediately upon examining my breast she agrees that it is NOT scar tissue and orders all new scans. Guess who was right? Yes, I was correct. It was not scar tissue. I did another 4 months of a stronger chemo and got a stable scan and went back to maintenance chemo.Five months later, I found the lump again. By then I was doing self breast exams all of the time! Unfortunately, the chemo did not work this time. I have been growing the tumor for almost a year now. I have had some new metastases show up in my spine, left rib, axillary node and a small spot on my esophagus. There is a trial chemo pill that I will begin soon."

 

From Day 1 I met Marie, the best word to describe her is nurturing. She is a Mom, a grandmother, has an out of the house job, volunteers for numerous breast cancer groups, creates gorgeous jewelry, is ALWAYS sharing amazing links and information to help people and bring awareness.  And soon I will have her RIGHT here by me for a little vacation. All this thanks to many that have helped and still are helping her make this dream come true.

 

Below are a few links she has shared.

 

 

 

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Holistic Health Coach for Survivors and Thrivers