As it turns out there were two stories about the use of bisphosphonates out of San Antonio. One was positive and one was negative. Their effectiveness in two completely different settings was analyzed. Their use for those who were treated with chemotherapy before surgery was not validated. However, in women over 55, there was a trend that this may have been helping. A trend on twitter is an immediate validation that something is of high significance. A trend in a medical study simply requires additional studies to see if the trend is an actionable finding. The trend, in the case of the latter study, seems to point to the amount of estrogen in the body. In the study that validated the use of bisphosphonates in early stage patients, the effectiveness was clear. Estrogen. Or more accurately, lack of estrogen in the body seems to be where these bone strengthening drugs have their greatest impact.
The one that nudged me to pull out my four bone density reports is the one that I mentioned in a recent blog post. In 2006, osteopenia was noted in my hip. Bone mineral density showed a reduction in 2008 less than one year after I began taking letrozole. Next test was done in 2011, another reduction and over two years later, this past August, still one more reduction. I am still not in osteoporosis range but the decline has been steady. My wrist was fine (borderline) in 2006 and by 2008, a 4% decrease in bone density added that to the osteopenia side of the page.
In 2006, the radiologist operated from a small office. The 2008 test was done on the same equipment. By 2011, he could no longer sustain his practice and joined a larger facility with different equipment so the comparisons between 2008 and 2011 may be a bit skewed (favorably) but they are still in a downward trend. The 2013 report clearly states the comparison with the test done 28 months earlier.
Bone mineral density of the lumbosacral spine has decreased. Ditto hip. Ditto forearm.
I am no longer under the direct care of my oncologist. I am in the survivor program. This, despite the recent remarks coming from San Antonio about the need for closer surveillance in ER+ patients AFTER the magic five year mark, has placed me in the office of the nurse practitioner. She is lovely. I am in the danger zone, without the expertise of the care of my oncologist to take a good look at blood work and test results.
We had a very good conversation about tumor markers and whether I would like the tests done. I declined. I accept the evidence that the tests are not reliable indicators. It helped that my mom's markers are stable. They have been since her diagnosis in 2007 and they remain within the same range today, nearly one year after she was diagnosed with metastatic disease.
And now, I have some serious questions. After the 2011 scan, my oncologist's nurse (really, it's like having two oncologists because yes, she is THAT good) called to make sure I was taking my calcium supplements. I assured her I was and that I would continue to take them. About two months ago, I read some of the findings about calcium supplements and made a decision to stop taking them. I still take D3. My fracture risk increased from 5% to 7.2% between 2011 and 2013. Despite calcium supplements which were still in my daily pill box and weight bearing exercise.
Now, I will say I am slightly irritated. I told the imagining facility I wanted a copy of the results. They mailed them to me. Like everything else, they were tossed in a pile of paperwork in what was my office and is now simply a disaster area which will required the assistance of a dear friend to organize.
After the information was presented in San Antonio about the reduction in metastasis and death in early stage patients who were treated with zoledronic acid, I wanted to know more. The study was only in women who were treated with bisphosphonates immediately after surgery/radiation/chemotherapy. No observations on women who started the medication years upon completion was included. Additionally, and even if they were presented, as I stated in my earlier post, these findings have yet to be peer reviewed. Thus, in this setting as a risk reducing method, another tool for early stage patients, is NOT approved.
However, it IS approved for use in patients who are diagnosed with osteopenia. In 2006, in 2008, in 2011 and in 2013, every single report mentions that clinical intervention "may be considered if not already undertaken." As I inch toward osteoporosis, at what point is intervention appropriate? That would be a good conversation to have and given the 2+ percent increase in fracture risk between 2001 and 2013, it seems to me, the conversation should have taken place in August when the findings were sent to the NP. I'm slightly irritated. I feel a phone call should have been placed.
I am scheduled to be on letrozole for another four years. That will not change but the havoc it is clearly creating in my bones is changing.
I have half jokingly said that my mom's appointment tomorrow (three month scans will be reviewed) is going to be hijacked with this bone density thing and the "Is now the appropriate time for intervention?" conversation that should have taken place with the NP, will be the central theme. I won't do that. I will, however, make it clear that I expect a call from her and that I would prefer to be placed back under HIS care.
Yes, I liked her. The NP, that is. But I have to wonder about the effectiveness of my care and follow up as a ER+ early stage patient in the post five year period. Shouldn't this have been given a bit more attention? My personal information coupled with findings that have been discussed for years before this was presented last week, in my opinion, was worthy of a follow up call from her office.
Maybe I'm being harsh, but the bottom line, I understand the risks associated with bisphosphonate use. I also understand fully, the risks associated with the possibility of micro-metastasis waking up and colonizing a compromised bone. I know, too, that studies have been presented regarding stress triggering recurrence in those who've already had a cancer diagnosis (emphasis, the study was NOT about stress triggering a first cancer).
The stress in my life has been off the charts. Things I've shared and things I've had to keep private. I'm employing every technique to reduce my stress but it's there.
Taken as a whole, again I ask, wasn't this all worthy of a conversation? Wasn't this worthy of the shared decision making process that accompanies patient centered care?
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