For this week’s Mets Monday story, please meet Sharon. Before her diagnosis of metastatic breast cancer, she already had non-Hodgkin’s lymphoma. She reached out to me after my friends Carolyn and Susanne posted messages on their Twitters and Facebook asking others for more Mets Monday stories.

I went for my yearly mammogram on October 22, 2013. The tech asked me why my left breast was hard. I told her I’d noticed it too and thought I pulled something at the gym. The radiologist looked at the films and saw a “shadow.” They scheduled me for a diagnostic mammogram with the teeny-tiny paddle and LOTS of pressure and an ultrasound on October 28, 2013. I was told it looked like something was pulling my breast tissue and they wanted to do a core biopsy to be safe, but were sure it was “nothing to worry about.” On November 14, 2013, an ultrasound guided core biopsy was performed. On November 6, 2013, my primary care doctor called and told me the biopsy showed infiltrating lobular carcinoma. She wanted me to see a breast surgeon to discuss the results further and plan the next steps. The breast surgeon told me the tumor was er/pr+, her2-, grade 3. She then scheduled me for a breast MRI on November 10, 2013 and gave me the name of the one and only plastic surgeon that worked with the hospital so I could set up a consultation. She also told me she’d like to work with my old oncologist to discuss treatment options. I told her I was not keen on seeing her since I had been seeing her every three months for follow-up for my lymphoma and she totally missed this, as well as ignoring my complaints of increased fatigue and bone pain in my lumbar and cervical spine. She told me the fatigue was a lasting side effect of chemo and that I was getting old and the pains were just arthritis. She also did a thorough exam of my breasts and abdomen every time I saw her. I didn’t do well on the MRI. The machine was malfunctioning and was very hot and my chest was killing me pressed against the plastic stand with holes for my breasts. The heat and pain was so bad, I asked them to stop the MRI because I was going to be ill. They told me no. I said, OK, you can clean the vomit out of the machine. They shot me out of there like a cannon and ran in with a pan which I proceeded to fill. End of MRI. By this time, I’m noticing that my left nipple is starting to invert. I’m thinking, “This is not good.” The breast surgeon schedules me for yet another core biopsy – same results. I’m thinking about the definition of insanity that I learned long ago. Meanwhile, I’m waiting for my previous oncologist’s office to call me for consultation. The breast surgeon called her after the MRI and I was discussed on a “tumor” board. It took a full two weeks for the oncologists office to call (on November 25, 2013) and they wanted me to wait another week and go to see her in an office not where I work, but 120 miles round trip from my home. I had a bad feeling about the progression I was seeing, I could now feel a large mass in my breast. I also did a self exam in front of the mirror (all my self exams were done in the shower like I’d been taught). When I lifted my left arm the entire outside of the left breast caved in. I called Cancer Treatment Centers of America. My first contact wanted to wait a couple of weeks to get me in for a second opinion so they would have time to get all the tissue and reports from the breast as well as the lymphoma. I told him I was certain it was in my best interests to see someone sooner rather than later. My husband and I saw the intake oncologist on November 29, 2013, the Friday after Thanksgiving. The rest of the appointments were not scheduled until Monday and Tuesday. He asked why they had put me through two biopsies when it was evident that the tumor was aggressive. I told him is guess was as good as mine. He told us he wanted us to have a PET scan the next day. My husband and I had intended to go home and stay overnight on Sunday, we had no clothes. He agreed to schedule the PET scan for Sunday. On Monday, I got the results. Stage IV infiltrating lobular carcinoma with “innumerable” mets to the cervical, thoracic and lumbar spine and “a few” mets to the sternum. I was 54 years old, post menopausal due to early onset menopause from chemo in 2009.

 

 

What is life like a metser?

At first, it was overwhelming and way too much to process. The person at CTCA who gave me the diagnosis was a surgeon, not a medical oncologist and he did everything CTCA doesn’t stand for. He showed no respect or compassion and was very blunt. I almost left in search of another breast center, but my hubby prevailed and asked me to give the medical oncologist a chance. I’m glad I did, I couldn’t have a better oncologist. But, I was so upset I vomited through all my appointments on Monday and cancelled the Tuesday appointments. I didn’t stop until Wednesday. While I was there, the MO gave me a shot of Xgeva, and a prescription for Anastrozole. The naturopath recommended supplements and gave written instructions to my husband. I scheduled an appointment for March. Now I’m living with a chronic disease. I don’t know how long I’ll be here, but I do know women are starting to survive 10 years or more. I’m hoping to be one of them. The Anastrozole is taking a toll on me, but it’s also kicking the cancer’s butt. At diagnosis, my breast tumor measured 8 centimeters. In March, 2014, it was 1 centimeter. I had a PET scan in July and NONE of the mets were active. My December PET showed one “hot spot” – L4, where I also have some of my arthritis. I do what many of us do: work to educate myself, to be my own advocate, find others who have shared experiences and seek their counsel, give support and hugs when I can and learn to accept them back. I have the standard “Mom” bucket list…I have one son and I want to see him with someone he loves with all his heart who loves him back. Checked that off, he’s marrying a wonderful person in November of this year. Now I want to see my first grandchild. Who knows, if people start spending money on research, I may see that grandchild grow.

Before your diagnosis, would you say you knew anything about breast cancer?

I have dense breasts, so this wasn’t my first rodeo with a biopsy. I had a stereotactic biopsy of my right breast when I was 40. It was pre-cancer (hyperplasia) and has never progressed. I got mammograms every year, did self exams every month. I wish I would have known to hunt for lumps in the shower but look for dimples in front of the mirror. After diagnosis, I did a little experiment. I asked close friends with large breasts if a) they did monthly breast exams (they did), and b) if they ever stood in front of a mirror and held up their arm and looked at the corresponding breast (they did not, but you bet they do now!). The only person that might have seen this sooner was my oncologist. My arms were over my head every three months, I complained about increased fatigue and pain in my cervical and lumbar spine, but she never connected anything. I broke two ribs doing nothing, the oncologist said I fell I just didn’t remember (I didn’t). My primary care doctor took me at my word and sent me for a bone scan (lymphoma loves bone marrow), but it only showed the broken ribs. I remember my oncology nurse well. She told me at the first infusion when I had an allergic reaction to one of the chemo drugs that if I had to have cancer, large B cell non-hodgkins lymphoma was the one to get. Fast growing, so chemo is perfect for it, but not too aggressive so there is no time to put it in check. She then said, “At least you don’t have breast cancer. You are never cured of that.” How prophetic. So I still have my breasts, I will probably never have chemo and I’ll just run through the list of Aromatise inhibitors until they no longer work, hopefully far into my future. So no, nothing prepared me for this, but nothing will stop me from fighting it as long as I have the strength either.

What do you wish other people knew about metastatic breast cancer?

Women with metastatic breast cancer are some of the strongest, most giving people I know. Breast cancer, especially lobular, is very sneaky. One minute you’re fine or “cured” when actually you may be one circulating tumor cell away from a death sentence. Breast cancer is serious stuff, it’s not all pink ribbons. Being permanently disfigured and devastated by side effects doesn’t give you a pass either. What does “prevention” and early detection do? How many lives does it truly save? I watched 60 Minutes last night. One of the segments was about clinical trials to treat neuroblastoma by injecting modified polio virus into the center of the tumor. Where are the trials to CURE stage IV breast cancer? They have made great strides in palliative treatment, that’s a long way from a cure.

What makes you happy?

My family, including my dogs, and the courageous women I’ve gotten to know. I joined a closed Facebook breast cancer group before realizing that most of the women were just starting the fight. I did however meet a couple of women who were where I am or further along in the struggle. When I went to visit a friend in Jacksonville, Fla., we drove down to Cocoa Beach so I could meet one of the women I met in the group. She has rods in her spine and femur and a smile on her face and a big hug and an amazing kinship with other woman, I felt like I knew her forever. We will always be connected.

What advice would you give to someone who really wants to help those with metastatic breast cancer? (This either be for a friend, stranger or someone who had early stage breast cancer.)

Don’t write us off, we’re not done yet. We don’t know our expiration date, but neither do you. Don’t define us by our diagnosis, we’re the same people we always were, but maybe a little better…stronger, more compassionate, more hopeful, more contemplative. Don’t throw pink ribbons and butterflies in our face, there but for the grace of God go you. Fight for a cure, not “awareness” or “early diagnosis” — the life saved by that cure may be your own.