What's in the old noggin today...

I've started this post several times in the last few days.  I have so much swimming in my head, every time I sit down to write, way too much starts spilling out.  This is just an introduction to what I've been mulling over recently.  Over the last month or so I've been immersing myself in researching how to manage and possibly improve osteoporosis.  

In November, I mentioned receiving a diagnosis of osteoporosis [OP] in a section of my spine after my first ever DEXA scan.   Having any amount of OP is hard news, and I didn't see it coming at all.  Then it felt like a double sucker punch to learn on the heels of an OP diagnosis that the aromatase inhibitor (endocrine therapy) I've been placed on for 5-7 years is known to diminish bone density.   

An aromatase inhibitor [AI] is prescribed to reduce risk of breast cancer recurrence - which is great, but sacrificing ones bones to reduce the risk of cancer recurrence seems an awfully steep price to pay.   "Not to worry", the doctor says, "there are medicines for osteoporosis too!"  Aside from the fact that OP drugs have some worrisome side effects, managing medicines that manage the effects of other medicines is not how I want to spend my "golden years" - if I can help it.  

I will meet with an endocrinologist in the spring, to see what she has to say.  On one hand I'm glad to have this appointment on the calendar, but on the other hand, I'm not thrilled with the drugs that will undoubtedly be recommended to me.   For now, I'm doing what I can do - in terms of making some lifestyle changes, and increasing my understanding of how exercise, nutrition, and yes...  possibly even drugs, may be used to get me to a better place with my bones.  

Since doctors don't have time to explain everything a patient needs to know in order to make a truly informed decision about treatment, I suspect the internet becomes a main source of information for a lot of us.  While the internet is a marvelous thing, it is not without its problems.  I am, first of all, very wary of anyone and everyone who has a YouTube channel and claims to be an expert.  It's an interesting time to live in.  So much information at our fingertips that we can avail ourselves of to improve our lives, but at the same time, the danger is great of falling prey to cyber snake oil salesmen and women.   Or following poor advice from well meaning and good people.  

I'm grateful for the people who share their experiences, and even medical expertise, online, but I try to be smart about consuming what is out there for the taking.  I research (or at least attempt to research) further anything that catches my attention and sounds like it might be helpful.  The internet was very helpful to me last year during the diagnosis and treatment of breast cancer.  It allowed me to dive deeper, to understand and trust the procedures done and treatments I received.  I'm hoping it will benefit me in this present situation, too  

I have found it helpful and rather amazing that the internet puts at our fingertips digital libraries of trials and research studies.  Even individual case studies can be enlightening.  We joke about consulting Dr. Google, but seriously...  Google is a powerful tool that, while it can drive a person insane with too much information, it can often help a person discover a solution to a difficult problem. 

Mostly, the internet has served me well.  Recently I stumbled on information that compelled me to approach my oncologist (just this past Monday) and ask him if a different endocrine therapy - that may actually help bone density - could be an option for me.  While he prefers an aromatase inhibitor for me, and frankly, I would too if it weren't for the bone density issue, he was agreeable to me trying the other (older) therapy.   In fact, in the notes of the encounter, was written that this switch was reasonable in light of the recent discovery of OP.  The older SERM therapy (in this case, Tamoxifen) is still widely used, and is considered great therapy for reducing breast cancer recurrence in pre-menopausal women, but aromatase inhibitors  have become the preferred therapy for post-menopausal women because AI's are a bit more effective, and they hold fewer potentially dangerous side effects for older women.

Having weighed the possibility of a terrible side effect of using SERM therapy with the pretty much guaranteed loss of bone density with AI's, switching to an endocrine therapy that won't harm my bones feels like a reasonable trade off.  And I can relax in the worry department while I wait for my endo appointment, and use my time and energy more productively, namely focusing on nutrition and exercise.   

It's possible (maybe) that the endocrinologist will ease my fears of osteoporosis medicine - even though I, personally, have big reason to be more concerned than maybe the average person does about one potential side effect in particular:  Osteonecrosis of the Jaw [ONJ].  It's not helpful to read that ONJ may be considered a rare occurrence if you fall into a category that makes you more likely to experience it.  I see my dentist later this week.  I will be interested to see what he has to say about it.  

For now, I'm relaxing into the relief I'm feeling because my oncologist heard and responded to my concern. And I feel empowered and motivated to continue to try to improve my situation, rather than helpless and rather hopeless like I was feeling about it over the last few weeks.

This week, I'm watching some of the presentations in a temporarily free online summit called Natural Approaches to Osteoporosis and Bone Health.  It has been interesting.  [I've removed most of the paragraph I wrote about accessing the free Summit because that is not pertinent at this point.]

I'm finding some of the presentations interesting, and oddly...  one of the main presenters, who recognizes the potential pitfalls of osteoporosis drugs, gave me insight and hope that this kind of drug may be safe enough for me to feel comfortable using for a short term.  It gives me something to discuss with the endo, at least.

Thanks for entering into my brain again.  Sometimes I just need to do a dump of all that's swimming around in there.  Though, to be sure...  this was more like a dribbly overflow of all that's sloshing around in my head at the moment.