NMJanet's Story

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"I was diagnosed with breast cancer in the left breast in 2010, ER+/PR+, at the very young age of 55. I was totally shocked. Even though my mother had died of breast cancer in her 40's, I felt I had done everything right and it would never happen to me. I was vegetarian for a long time, then switched to vegan, took healthy supplements, kept active, ran my own business, often used alternative therapies and treatments, had a negative BRAC result, and had mammograms. All the things we believe are supposed to keep us healthy. I had noticed a lump in my breast for years but each mammogram was negative and my doctors assured me it was a fibroid cyst and nothing to worry about.

"In 2010, I realized I hadn't done a breast self-exam in quite some time so stood before the mirror to check myself out. As soon as I raised my left arm, I knew I had cancer. The skin was puckered right where I had always felt the lump. I just couldn't believe it and felt life was playing a cruel joke on me. I had just recently moved to a new state to open a small business in my favorite vacation spot, didn't really know anyone, had no friends or family within a thousand miles, and had never felt so alone in my life. My family and friends were shocked and sympathetic when I called with the news but no one was able to come and I'm not sure what I would have done if they had anyway.

"In early 2011, I had a lumpectomy and 6 1/2 weeks of radiation. One of the oncologists strongly recommended chemo as well but I just couldn't force myself to do it. I was on my own with a brand new business and just didn't feel I had the financial resources or the time to have to deal with probable side effects. My surgeon thought my choices were fine and she felt she got it all. The oncologist started me on Femara and I lasted less than 2 weeks. Had a horrible reaction, both mentally and physically. Apparently I'm allergic to it but it also sent me into such an emotional turmoil I could barely function. Imagine trying to run a shop when all you can do is cry non-stop! Not good for business. After that experience, I refused any other medication. I had acupuncture which immediately helped balance out my emotions and I felt better in no time at all. All my energy came back and I felt healthier than I had in a long time.

"Fast forward to 2014. During the summer, I began to feel tired and my back and ribs started hurting. I thought maybe I had pulled a muscle while gardening. I took over-the-counter pain meds, but it still hurt so I went to see my local doctor. I had X-rays but nothing showed up, so we agreed it must be a pulled muscle and I should continue taking it easy and taking Tylenol and come back in a month if it wasn't better. I went back, and then back again. I was put on a muscle relaxer but [there was] no affect on the pain and I was getting more and more tired. Finally, I went to my doctor again in tears and was told to go to the ER because she didn't know what to do anymore. Spent 12 hours in ER, being given ultra-sounds, EKGs, blood tests, etc., but nothing really showed up. Eventually a doctor came in and said it could possibly be my gallbladder and I could stay and have it removed or I could just go home and see if the pain would eventually go away. I knew something was wrong with me so I insisted on staying. They said they'd take out my gallbladder in the morning and I'd go home that night. Seven days later I went home....

"After the surgery, I wasn't getting better so they did an MRI and CT scan. The next day, the oncology department was in my hospital room to inform me I had what looked like cancer lesions on my spine. I was given a few days to recuperate from the gallbladder surgery then had a biopsy on my spine confirming the cancer. Further tests showed bone mets in my pelvis, femurs, and ribs as well as my spine. When I was told I had bone metastases, I didn't even realize what that meant and my doctor never explained it to me, other than to say I had cancer. My first thoughts were that I had cancer again, unfortunately, but would get treatment like before, although probably having to do chemo this time, and move on with life. I felt shocked and devastated with the news but not nearly as devastated as a few days later when I began to do my own research online and found out for myself that this is not curable and could kill me! I had already told my family but then had to go back and tell them it was much more serious than I thought.

"I started on Arimidex in early November of 2014. The pain in my bones over the next few weeks was horrible. In December, I started getting a monthly injection of Xgeva for my bones and within a short time all the pain went away. I now have severe joint pain in my right thumb and slight lower back pain daily (especially on days when I really overdo it) and I lack energy to do everything I want to do, but all in all I feel pretty good and can lead a fairly normal life again. Last CT scan showed some slight improvement in my bones, so apparently the meds are working for now. I have hot flashes, night sweats, and don't sleep well but I can live with those symptoms. I can tell the Arimidex affects me emotionally too but nowhere near as badly as the Femara. My last blood test showed a big jump in the triglyceride level but my doctor doesn't seem to think it's anything to worry about right now.

"I moved in with my single son and grandson 3 years ago to help take care of him/them full time. My first thoughts were extreme sadness that I might not make it til he is grown and might not be able to care for him after moving here to do so. I adore that little one and the thought of possibly not being here for him is heartbreaking. I love reading all your stories; they give me hope that I can make it past the scary statistics listed online. Thank you to everyone who shares on this site and others and let's hope this really does turn out to be a chronic disease rather than the alternative for all of us."

-- NMJanet, over 1 year metastatic

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