Triple Negative IDC

Hello All - just want to document my experience in hopes it may help others. I'm 52, single and living in my hometown Los Angeles, CA.  I felt a lump in my breast about six months before getting evaluated and initially thought it was a cyst. There was no pain until I went to get a chiropractic adjustment for a running injury and knew something was not right. I've never had a mammogram - always felt it was counterintuitive to squeeze my breasts between plates and radiate them yearly.  I was told later by both the surgeon and oncologist that the type of cancer I have often appears between mammograms, since it's aggressive and fast growing.  

I went to the St John's Breast Center in Santa Monica for evaluation on 3/29/12. I told the doctor I didn't want a mammogram if there was another way to examine the lump. She ordered an ultrasound that took place on the spot in the clinic, and she performed a biopsy right afterwards. That was on a Thursday, and I received my diagnosis on Monday, 4/2/12.  Bilateral MRI took place two days later with lumpectomy and sentinel node biopsy on Friday, 4/6/12.

• Left breast - invasive ductal carcinoma (IDC)
• Stage IIA (2.5 cm - 6 o’clock)
• Node negative (0/6 nodes)
• Grade 3, poorly differentiated
• Morphology: triple negative (weak progesterone): HER- ER- PR+
• BRCA negative
• Subtype classification (BL1, BL2, IM, M, MSL, LAR) - unknown

A few weeks after surgery, I had PET/CT and bone scans - all returned clear with no metastasis (though PET/CT scan findings reported suspicious neoplasm at six neck and chest nodal stations that may or may not be related to surgery). It took a few weeks to find an oncologist. I really did not want chemotherapy, but the diagnosis was scary.  Also, I have a history of trauma and depression (some related to medical procedures) and was fearful about what the impact might be on my mental as well as physical health. I met with two different oncologists - both said 10 out of 10 oncologists would recommend chemotherapy and radiation for my diagnosis. (I was told with triple negative Oncotype or MammoPrint are not indicated since they are only validated with hormone positive tumors.) I felt most comfortable with the second oncologist and her office staff, even though she recommended the "biggest gun in the arsenal" - 4 rounds of A/C dose dense once every two weeks, followed by 4 rounds of T/C, once every two weeks.  I had a port installed and hoped for the best.

A little background - a few months before my diagnosis, I had moved in with my elderly mother to help with her care - she has Parkinson's and dementia.  She had a live-in caregiver, and I helped bridge the gaps on the weekends. I still kept my apartment as an occasional refuge and had to decide whether to stay at my Mom's through treatment or move back to my apartment. After talking with the caregiver, I decided to stay there knowing she could help with meals, etc.

I had my first and only dose of A/C on 5/29/12 and within a short time, I knew I would not be doing it again. Not only was the physical experience horrendous, but it sent me into a chemically induced depression. I could not stop crying and was heading into a physical and mental nose dive. I began to lose weight rapidly, even though I was eating as much high calorie foods as possible, I couldn't keep up with the metabolic demands. I'm 5'4" and weighed in at 115 pounds when the chemotherapy started, so I did not have alot to spare and was soon emaciated. I had shooting pains in my left arm, and it was occasionally going numb.  At this time, my brother was also having health issues, and a little more than two weeks after I started chemotherapy, he passed away unexpectedly.  I had to deal with this and my Mom while doing my best to hang on. At this point, I decided to move back to my apartment to focus on getting well and find Mom a weekend caregiver.

My oncologist wanted to switch me to four rounds of T/C instead of the orginal plan, but I declined. I was surrounded by death and dying and had decided if my life was going to be short, I did not want it to be like this. To the doctor's credit, she reassured it me isn't wasn't her way or the highway, and she would continue to oversee my care regardless of what I decided. After my brother's memorial, I met with the radiology oncologist - she recommended 7 weeks, 35 treatments 3D conformal. I had the port removed and started treatment on 8/7/12.  Within four days, I was in a great deal of pain - my nipple felt like is was burning off my chest, and my left arm was inflamed and going numb again. My mouth started burning again as well making it difficult to eat, and another nose dive was looming. The city was experiencing a heatwave at this time, and I kept thinking this must be what hell is like getting radiation and returning a baking hot car and apartment. I decided to stop treatment. I didn’t have reserves to draw on and was not willing to endure more.  I was completely overwhelmed and doing the best I could while feeling crushed under the weight of my life, diagnosis, and modern medicine. My best chance at survival was to allow my body to recover fully and regain strength.  The doctor was not happy and bore down on me to change my mind, but I did not return.

My Mom's condition continued to decline rapidly with the stress, and she ended up in the ER and hospital in October. I mustered what little strength I had to help her but it was one more stressful event that was difficult to endure.  I continued to recover through the end of year and finally started to gain weight and strength.  Starting a few weeks after my diagnosis in May, I had been meeting regularly with a psychotherapist and acupuncturist - both provided needed support and were integral to my healing process.

My left arm continued to be a problem, and I finally had to the energy to start physical therapy at the end of November. It seemed to be frozen shoulder, though after about a month of treatment, it began to thaw and slowly range of motion is returning.  I also started a period in December after four months of nothing, and it kept going for three weeks.

I had been on medical leave at work for eight months since May, and I decided to try returning to work in January. I'm able to work from home, and my boss is flexible. It's a challenge, and my existential crisis right now is I don't know what I'm supposed to be doing, so trying to work is as good an idea as anything else.  My Mom's condition is not good - she's on palliative care at home with 24/7 caregivers - she hallucinates, has delusions, and is unstable on her feet. So work gives me something else to focus on until I get more clarity on my life.

Despite these difficult times, my faith in God has sustained me and given me strength to endure - at times, it's been all there is. One valuable lesson from a cancer diagnosis is we truly only have this very moment and to make the best of it. I don't know what the future holds, and I will continue to do my best to take care of myself for the best outcome. I take daily walks, including twice a week at the beach on the shoreline.  The water and waves are very relaxing, and I'm reminded there are waters in heaven, as well as earth and in our bodies - there is a connection and peace while walking near the ocean. I'm continuing with acupuncture and take a variety supplements, as well as eating organic foods that I cook at home, avoiding plastics of all kinds where possible.  It can feel like a pea shooter versus a nuclear bomb at times, but I also know the power of God to heal me.

I'll keep you updated as the months and hopefully years go on. We also need pressure politicians and others to fund research for a cure and better treatments. What we are offered now is truly awful, and I cannot wrap my mind around making us sick to get well. Nearly all research is funded by drug companies and is tilted in the direction of toxic treatments to stop cell division and aberrant DNA instead of methods that enable or strengthen the body's own immunity to detect and rid itself of cancer.

I was also encouraged to share my story here after reading this NY Times article - "When the Patient Knows Best" - about a woman's decision making process when facing end stage breast cancer: http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/

Thanks for listening - God bless all of us who are in the struggle!