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CarolinaGirl_jlo's Story

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"I was diagnosed 6 months after my youngest son was born, April 22, 2009. I was 36 years old. I found a lump and dismissed it as my breasts adjusting to the post-pregnancy/breastfeeding. My doctor brought me in and ordered a mammogram, ultrasound, and biopsy. On the 22nd I received the call that it was positive for IDC. I had a mastectomy on the right side and was stage I with 0 lymph nodes on sentinel node biopsy.

"Delayed reconstruction and was started on Tamoxifen.

"August 31, 2011, my doctor was suspicious of a pea-sized lump on my mastectomy side. She sent me for an ultrasound and biopsy. Results were positive for recurrence. CT Scan showed internal mammary nodes enlarged as well. Implants removed, surgeon could not get to sub-mammary nodes because they were under breast plate. Oncotype came back high for recurrence. I went through 36 rounds of INTENSE radiation. Afterwards, just 4 rounds of Cytoxan & Taxotere. Again, delayed reconstruction. I received monthly Lupron shots and eventually Femara. Unfortunately, I got my cycle and had to go back to Tamoxifen. Eventually, she moved me to Faslodex.

"December 2014, began to feel extreme pain in my right hip. I called my brother-in-law, who is an orthopedic surgeon. He was on vacation and advised he'd see me 1st thing Monday morning. By then, the pain subsided so I cancelled the appointment. I started logging when it hurt, time of day, what I did for relief and whether it worked. I logged this for 6 months (too long).

"June 2015, I showed the log to my oncologist. She immediately ordered an MRI which revealed a 5cm lytic lesion on my right iliac wing. Ibrance was added to my treatment plan. I opted for full hysterectomy with removal of ovaries. Later, she added Xgeva to my plan.

"I received regular PET Scans which showed many lymph nodes lit up in addition to activity in the hip as stable. However, my tumor markers (CA15-3) were sky-rocketing. they doubled every week. At the highest/last point they topped out at 4,000 (normal is 0-35). I traveled to Johns Hopkins for a second opinion. Goal - find the cancer. He recommended a change in modality of scans. A CT Scan revealed two separate lesions on my spleen. We changed the oral chemo to Xeloda...markers continued to rise. I was vomiting blood and was admitted through the ER. CT Scan revealed progression in the spleen along with other lymph nodes. Endoscopy revealed three ulcers from my pain management regimen. I was taken off NSAID and now just use Nycenta for pain management for bones. Brain MRI revealed spread of bone mets to skull.

"Chemo changed to Doxil, once a month. I have only had 2 doses so far and they wanted to wait to run tumor markers until any 'flare' had dissolved. I go on the 18th. They will also schedule scans at that time.

"Bone pain is in control with Nycenta. Spleen pain is horrible. My stomach cramps with every yawn, cough, sneeze, awkward twist of name it.

"There is not much literature online about mets to the spleen so I have no idea what to expect from a prognosis stand-point. I have 3 boys; 16, 13, and now 7. Everyday is a big 'will this be a good day or will I just need rest?' The fevers get high and I've had several trips to the ER to make sure my counts are OK when they get above 101.

"I'm surviving. :)"

-- CarolinaGirl_jlo, diagnosed metastatic in August 2011

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