retrocath's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 8 years ago, Female, Age: 66, Stage IV, HER2 Positive: Don't Know, ER Positive: Yes, PR Positive: Yes

  1. 1
    • retrocath
    • Experience with Invasive Lobular Car...
    over 8 years ago
    retrocath's Avatar

    Cancer has spread/Metastasized

    Oh No

    My husband had to have back surgery. The closest neurosurgeon covered by our insurance was 55 miles away in upstate NY in the winter!! I spent the last part of November, December and the 1st half of January trying to make sure my hubby got the medical help he needed. In the meantime right after Christmas, I developed the flu--I had good days and bad days and kept telling myself I was getting over it and feeling better. Finally after my husband's surgery, I admitted defeat and went to the local clinic. I went in on a Monday and had blood tests. The next day they called me and told me to go to the emergency room because I seemed to have "an infection of unknown origin". My neighbor dropped me off at the hospital (my husband was only 4 days out from surgery) so I made him stay home. I had numerous CT scans which showed I had a kidney infection and also showed the lobular breast cancer I thought I had beat, has been metastasizing to my spine and pelvic bones. In 2002 -2003 I had 2 surgeries, staph infection, chemo, radiation and 5 yrs. of tamoxifen plus a few months of arimedex (which made me very sick). After that I had mammograms (you know, the gold standard) but no testing ever to see if the cancer had spread. I think this is par for most of us unless you have a Dr. who is willing to do additional body scan tests. Let's face it, mammograms will detect cancer in your breasts but not if it has spread. I don't know how long the cancer has been metastasizing to my bones. Did it start after I finished hormone treatments or did it start as soon as I finished chemo?? I am hoping we can get the medical community to start doing baseline scans so they have something to compare future scans to (even a scan every 2 or 3 years would be better than none). I find out soon what my bone biopsy shows and have already started shots and something to knit my bones together!

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