Hope and Courage

Living With Stage 4 Breast Cancer

Home / My History

My History

My History

I was first diagnosed in my 30’s and my breast cancer never showed up on mammogram even when the 1st occurrence was palpable — each time it was only detected on sonogram.

1993: Doctor misdiagnosed palpable lump after negative fine-needle biopsy — should then have had an excisional biopsy but I didn’t know that at the time. I went back in 1994 and insisted on excisional biopsy and it was cancer — he’s lucky I didn’t sue and he knew it.

1994 Dx: Invasive Ductal Carcinoma, Stage I, ER+/PR+, HER2-
1994 Surgery: Wide Local Excision, Full Auxiliary Node Dissection, 16 nodes removed, no lymph node involvement, tumor size 1.8 cm, very slow growing, no necrosis or vascular/lymphatic invasion seen, clean margins, (left side).

1998 Dx: Invasive Ductal Carcinoma – 2nd Occurrence, Early Stage I, ER+/PR+, HER2-
1998 Surgery: Wide Local Excision, clean margins, tumor size 0.5 cm, (left side).

2000 Dx: Invasive Ductal Carcinoma – 3rd Occurrence, Early Stage I, ER+/PR+, HER2-, considered new primary in opposite side of breast.
2000 Surgery: Modified Radical Mastectomy, clean margins, tumor size 0.5-2 mm, expander reconstruction — later developed capsular contraction around expander (left side).

2010 Surgery: Botched 2nd Reconstruction attempt after capsular contraction developed — immediately switched surgeons.

2011 Surgery: 3rd Reconstruction attempt with new surgeon to fix botched previous attempt — never completed full reconstruction since results were so poor.

2012 Dx: Stage IV, metastasis (mets) to bone and lymph nodes, multifocal mets throughout hips, sacrum, iliac, spine, vertebrae, with severe radial nerve pain along ribs where cancer grew out of spine in various places and was pressing on nerves. Largest sacrum lesion over 2 x 1 inches. 

2012-2013 Hormonal Therapy: Non-steroidal Aromatase Inhibitor: Femara (letrozole), side effects included joint pain — stopped working to slow disease after a year. Cancer mutates and eventually becomes drug resistant so you keep trying new drugs to see what will then slow it down.

2014 Dx: Stage IV, diffuse metastasis (mets) now throughout skull, clavicle, scapula, rt. & left humerus, all cervical vertebrae, all thoracic vertebrae, all lumbar vertebrae, pedicles, ribs, sacrum, coccyx, ilium , and rt. femur — at very high risk of fracture.

2014 Hormonal Therapy: Faslodex (fulvestrant), painful monthly intramuscular gluteal injections — was not effective at slowing progression of disease.
2014 Hormonal Therapy: Aromasin (exemestane) and Arimidex (anastrozole) — had severe reaction to Arimidex and it didn’t work, tumor markers kept going up, indicating cancer had mutated to grow without estrogen and was no longer responsive to hormonal therapy — next step was oral chemo.

2015 Dx: Metastasis to liver in multiple places throughout left and right lobes. Various lymph nodes involved in upper left chest area and near clavicle. 

2015-2016 Chemotherapy: Xeloda (capecitabine) oral chemo – 7 pills a day for 1 week, then off for 1 week, repeat until cancer mutates again and is no longer responsive to Xeloda — had some uncomfortable side effects so oncologist lowered dosage to 6 pills a day.

2012-2016 (Currently) Denosumab (Xgeva) An injection of a monoclonal antibody and RANKL inhibitor to prevent bone complications from bone metastases from solid tumors. I started getting shots every month and now get them every 4 months.

As of April 2016 Off All Treatments: Getting only Palliative Care and pain medications when needed. Have home hospice and will transition to a live-in hospice facility at some point.

As of August 19 2016 in live-in hospice at Regional Hospice in Danbury CT: I am now in a wonderful live-in hospice that is taking great care of all my needs. They have my pain under control and the facility is beautiful and not a hospital setting at all. Check it out here:

website: https://regionalhospicect.org/

video: https://regionalhospicect.org/media/newsroom/video-gallery/

photo gallery: https://regionalhospicect.org/residence/hospice-center-photo-gallery/