I am so glad to find a site that is very active. I have been on several breast cancer discussion boards since my diagnosis September 1, 2010, but they are not very active.
First, let me share about my journey.
I had a by-lateral mastectomy with the sentinel & 9 nodes taken from both sides. They found what was left 2.5 cm of the cancer. ( the first surgeon cut right through the middle of the lump and was told everything looked good and no cancer, until the pathology came back), so who knows how big the original cancer was. I had both DCIS and Invasive Carcinoma, Stage IIB. My Oncologist said I was this stage and not Stage III because they did not actually find tumors in the lymph nodes. But, the pathology said that there was cancer traveling from the tumor to the lymph nodes and it had connected to the vascular system.
I had 4 treatments of FAC and 12 of Taxol, but she did not think I needed radiation. I finished Chemo on April 15, 2011. I started getting back to my daily routine and had started exercising again. I also, had started tamoxifen. In August, 2011 I was diagnosed with Pulmonary Embolisms, two lungs full. The Dr's think the tamoxifen caused them so they put me on Arimidex, blood thinners and Horse Shots to stop my ovaries from working . March, 2012 I had a total hysterectomy so I could get off the blood thinners and the shots.
This is my delima, after my first treatment of the Taxol my right hip started hurting. I hurts everyday, worse when I first apply weight on it after sitting for any length of time. ( I walk with a pronounced limp for the first 10 steps or so) This I can live with, but what I am having a hard time with is that at night when I lay down. I hurt so bad I can't fall asleep until around 2 and I get up at 6. Four hours of sleep is not what I can survive on, night after night.
I have had Physical Therapy and a cortisol shot to see if that helped, but it didn't. I had a X-ray of the hip in January 2010 when it first started hurting for no reason. But, since then the only thing the Dr's have done is a yearly Bone Scan that is not showing anything. I have seen a Orthopedist but he said he could not do anything else since the cortisol shot did not work. In the last 6 months my Alkaline Phosphatase (ALP) has been climbing slowly. It is not off the chart but it is 163 and normal women should be around 120 (50-136 ranges) but it has steadily climbing. I have read this shows activity either in the liver or the bones.
For the last week I have only had 4 hours of sleep each night. As soon as I slow down the activity of the day the pain gets so bad in my hip bone it starts radiating down my femur and into my lower back on that right side. I take amitriptyline for the neuropathy and ibuprofen by the hands full. I have sleeping pills and pain pills but I can't take then during the week because I have such a hangover in the morning it takes me 3 or 4 hours to get work up good. Besides it still takes me several hours to get to sleep even with the extra meds.
1) I would like to know if you have bone mets, is this the kind of pain you have?
2) Should I demand further testing on my hip?
3) How did they find your mets if not at your first dx?
I am so worried that I have mets in my hip and that it will spread to my organs before I am diagnosed.