ih8cancer's Story

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"I was diagnosed in June of 2010 with stage IA high-grade ductal carcinoma that was strongly ER positive and mildly PR positive. The tumor was only 3mm in size and in my left breast. It was found during a routine first mammogram ordered by my doctor because I was almost 40 years old and had not known family history due to being adopted. As it turned out, they found breast cancer!

"I decided to have a lumpectomy because the cancer was so small and was advised that a lumpectomy or mastectomy would likely have the same result...which was anticipated to be curative. During this lumpectomy, they did a sentinel node biopsy of 3 or 4 nodes. They were all negative. When I returned to the surgeon for a post-surgical follow-up, I was told that, while she did get clear margins, one side had only a 1mm margin and they want at least a 5mm margin. I was asked to have a second surgery to revise the lumpectomy to take a larger margin from that one side. I underwent the surgery without any problems.

"I was then allowed to heal and went through a course of radiation to my left breast. Radiation was completed in November of 2010. At this time, I decided to have genetic testing done and found out in December that I was BRCA2 positive. I started tamoxifen and it was suggested that I have my ovaries and tubes removed as a prophylactic measure due to the much increased chance of ovarian cancer (and the strong ER-positive receptor status). I had my ovaries removed in 2011 at the age of 40 and went into surgical menopause (which, for lack of a better way to describe it, really sucked!). A year later, they changed me to Aromasin instead of tamoxifen.

"Fast forward to January 2016. I had mammograms and MRIs alternating every 6 months from 2011-2016 that were all negative. I celebrated 5 years cancer-free in late December after having a negative mammogram on 12/28/2015. About a week later, I noticed a supra-clavicular enlarged lymph node on my right side (under the collar bone), I am a registered nurse and remember from college that this is not a favorable place to have an enlarged lymph node. I had an ultrasound revealing abnormal lymph nodes on both sides of my neck. This led to a biopsy and a diagnosis of a Stage IV breast cancer recurrence. There are no signs of cancer in my breasts, which was why I was thinking I was in remission with all of the scans being clean for 5 years. The PET scan and nuclear bone scan revealed mets in my pelvis, lumbar spine, thoracic spine, cervical spine, and sternum as well as many cancerous enlarged lymph nodes in my chest area. Needless to say, having a recurrence was not on my radar! When I went through treatment in 2010, they were highly optimistic that I was lucky to find the cancer early and it was very likely to be cured. Knowing that I have BRCA2, I expected to have the possibility of dealing with breast cancer again in my life, but I figured I was watching for a new cancer, not a recurrence. I was/am totally blind-sided and devastated!

"I decided to explore my treatment options and chose to get my treatment at Cancer Treatment Centers of America in Zion, Illinois. They started me on Xeloda (2000 mg in the morning and 1500 mg in the evening orally) and I have had GREAT response from it. My tumor markers are down, my circulating tumor cell count is down to zero, the lymph nodes have significantly shrunk, and it appears that the bones are healing. I do get a shot of Xgeva every 3 months to help with bone healing. I also get massage, Reiki, and acupuncture treatments at CTCA when I am there (which is every 3 months now).

"That's my medical story. My personal story is that I am the mother of 5 children ranging in ages from 16-year-old twins to 24 years old. I am the step-mother to 4 children ranging from 15-25 (the 15 year old lives with us) and my oldest step-daughter has 3 children ages 1, 3, and 5. So I am a busy mom and very active in my grandchildren's lives. I have recently decided to resign my beloved job as a labor and delivery nurse to stay home and be with my family. My kids struggle with the diagnosis and my 16-year-old twin girls are in counseling to deal with it. My biggest frustration is not knowing how long I have to live. I've always been a big 'planner' and not knowing what the future holds is so hard.

"I hope that I can meet other women to share stories, information, and support. I can't really discuss my true feelings with my husband and children. Emotionally, they just can't give me the support that I want and I don't want to burden them."

-- ih8cancer, diagnosed metastatic in January 2016

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