I always wondered what would happen after I stopped the Tamoxifen. No one I spoke to could really define if it had changed their lives in anyway. In January 2014, five years and four months after my initial diagnosis, I stopped the Tamoxifen.
At first, nothing seemed to changed too much with the exception of one less pill to take per day. March was a busy month - our daughter was getting married, work was quite stressful, and my 88 year old father's health was turning downward.
It was during this time, that my family noticed some changes in me that I did not recognize or even realize that continue today, ten months later. I had had an initial bout of vertigo, confirmed by my physician and an ENT doc, that sent me reeling for a few days after waking up one night from a deep sleep with a vasovagal response - my body felt cold and hot simultaneously and I was dizzy and nauseous. I thought I would die. It was terribly frightening.
After that event, I started to have a slight head tremor and my speech articulation changed. I started having balancing issues - having to hold onto a bannister whenever I went up and down stairs. Prior to this, I was able to bounce up and down stairs without holding onto anything. When I went up the stairs at night, it was like dragging 200 pound weights in each leg - a real effort. The balance issues have improved since then.
I had my yearly physical in April, and nothing untoward showed up - all labwork was normal.
Even the neurological testing in the doctor's office was normal. However, the symptoms continued. In June, I started having bleeding from my right nipple out of nowhere. I went to the breast surgeon, had an ultrasound, another mammogram, and an MRI, but nothing conclusive could be determined.
In July, I went to neurologist to get an answer to these neurological changes once and for all. He told me I had either a neurological problem or a neurological response to another problem. I had a brain MRI (to look for brain tissue problems) as well as an MRA (to check out my brain circulation). Both were perfectly normally for my age. There was no evidence of tumors or blockages or past "events." A neurological disease was ruled out. The mystery continues. I have an appointment next February 2015 (earliest appointment I could get) with a tremor specialist.
In late July, with the nipple bleeding continuing, I chose to have a double mastectomy, a decision made years before, after the last time I had breast surgery for left breast nipple bleeding. The continued stress of breast issues and remembering my Mom died of breast mets made the decision easy. The plan was to remove both breasts, have expanders inserted during the surgery, and then replace the expanders with implants.
The surgery went well, but recovery did not. The day after the surgery, my father died. I had drains in for six weeks. On top of that, because I had radiation in the left breast five years before, the breast "rejected" the alloderm lining and the expander. After 13 weeks, I am still not healed in that breast. The right breast healed completely, but slowly - I contracted an e.coli infection in that breast from the hospital. Three weeks after the surgery, I was back in the hospital on three super antibiotics trying to get things on track, but I was going nowhere. On the third day of hospitalization, I asked the surgeon to remove the expanders, and I started feeling better immediately.
The weakness from surgery continued for weeks. When I went back to work, I eased in slowly - everyone being quite understanding of my limitations. I still have excess skin on my breasts, based on the fact that I was planning to have implants, that I will have to have removed in the future. At this point, my breasts look like cinnamon rolls without the icing. The good news is that there was no cancer. The ultimate goal!
Did going off the Tamoxifen cause the nipple bleeding? Did it cause the neurological changes? I don't know, but I speculate the timing and the fact that the MRIs were negative, it could have. I hope to know more in February. Stay tuned for my next blog...
