DROPPING THE BALL ON 2013

I'll bet if I took a poll, I could almost predict what might be chosen as THE stories of 2013.

Angelina, Myriad, DCIS, mammography, over treatment, unnecessary mastectomies, tamoxifen for ten.

Those are a few of the headlines that jump to mind.

What matters to me?  The stories that are buried.  The stories that never quite rose to popularity.  The stories that weren't deemed worthy of the evening news or those that were never elevated to splashy headline levels.

What might they be?  In no particular order:

• The oncology drug shortage, ongoing.  I wrote about this when I was new to this blogging gig.  I wrote about it on at least three other occasions.  The government has guidelines in place but guidelines are not mandates.  The shortages are a problem.
• The women in India and the cervical cancer studies.  Lauded at the annual ASCO meeting for their lifesaving research, I was, and still am, physically ill over the manner in which the studies were conducted.  These were/are women, not lab rats.  Ethics were tossed out the window and I'm accused of being an armchair activist?  Perhaps. But I don't sell out on my integrity simply because the ends somehow justifies the means.  And, I don't take kindly to anonymous comments, either.
• The dismissive tone of an article, including a suggestion by a prominent doctor that insurance companies should refuse mastectomy unless medically indicated.  In my most humble opinion, a giant step backward in patient centered anything.
• A missed opportunity by ABC News and Good Morning America.  The misconceptions about early detection and the over-emphasis on the importance of mammography might have been clarified.  Instead, we were pacified with the Pink Pledge.  EPIC #FAIL
• How the hell do we silence the voices of the celebrity spokespersons?  Suzanne Somers is at the top of my list. Melissa Etheridge pissed me off, too.
• The importance of some form of counseling before any genetic testing is entertained.  The tentacles of results are far reaching.  I recall comforting a woman whose results were positive.  She was beside herself, sobbing, "I can't tell my daughters."  Yes, there are ramifications and it's imperative that tests are done with a full understanding that the information gleaned can be a burden to some.
• When will the NFL stop worrying about our breasts and start worrying about the brains of their players?  It's not even about the damn pink.  It's about the concussions and it's really disgraceful.
• The word stigma should have a horrible stigma attached to it.  Lung Cancer for starters.
• Followed immediately by mental illness and can someone tell me HOW this blog post found its way to a respected medical blog?  Seriously, where is the outrage over the lack of interest, over the insensitive remarks of a doctor, dismissing mental illness as a loss of perception of what is really terrible.
• And why-why-why-why is metastatic disease still in the dark ages.  And why is it still completely misunderstood by so many.

I'm sure there are others but that flew beneath the radar.  This is just a quick sample of some of the things that I believe deserved far more discussion.

To all who have remained with me, thank you for staying by my side.  For choosing to be Fearless.  To those who have just joined, Welcome.  And Thank You, Too.

I'm looking forward to the new year.  There are some exciting things happening.  I hope to have all of you by my side as the next adventures unfold.

To all whose lives were cut short over these past twelve months and to some very special people who are having a really rough time right now, I'm holding all close to my heart.

For Mom.  The year may have started with horrible news, but your recent scans that show healing and no progression is the greatest way to usher in the new year.  I love you.

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HAPPINESS AND LOVE TO ALL

As each year begins to wind down, I can't help but reflect on those things that are different from the year prior.

And each year, there are things that may have caused me tremendous pain and others that might have brought me an abundance of happiness.

This year, the scale is balanced.  There has been deep sorrow and there has been exuberance.  

It is because of the relationships I have developed over these past twelve months with so many of you, that I am still standing after being slammed just days into 2013.  The year began with my mom's diagnosis of metastatic disease.  Happily, it is ending with scans confirming NO PROGRESS.

There have been other things, highly personal things that I've chosen not to share.  Some stories are not mine to tell.  During times of radio silence and erratic posting, I was getting an education in other forms of advocacy.  I was regrouping.

And then, there have been things that still have me shaking my head in disbelief.  The invitation to run around NYC with Gilles Marini and have him sign a T-shirt, while it was on my body.  The White House visit.  Being a part of history as Susan Love and Nancy Brinker took the stage together.

For me, everything about 2013 seems to have taken place on a grand scale.  The lows were very low and the highs were equally high.  

Thank you all for letting me into your lives.  Thank you all for the generous gift of your friendship and your love.  There are unwritten comments on many of your blogs.  I read them.  I learn so much from all of you.

There are comments written here which have no response.  I've read them all.  Several times.

While I may have been overwhelmed by some of the back stories and by perhaps, taking on a bit too much, nothing has overwhelmed me more than the support you've all so generously shared.  You've lifted me up more times than you can possibly know.  I am grateful.

I’ve made many new friends this year, and strengthened the friendships with those of you who have been by my side before this year.  Yes, I am grateful.

I wish you a holiday that is filled with the love of family and friends and a heart that is filled with joy.  I hope 2014 blankets each of you in the warm glow that comes with peace and calm and serenity.

With all my love,

AnneMarie

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I HAVE A BONE TO PICK

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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THE REAL DEAL FROM SAN ANTONIO

No hype.  No spin.  Just the facts via links from people who are far more qualified than I am to sort out the information from San Antonio.

For starters, Dr. Love.

Begin at The Big Breast Meeting and then you can read her take on the presentations from Day One, Day Two and Day Three.

The #BCSM Community site has a post by Dr. Robert Miller.  Dr. Miller is a medical oncologist at Johns Hopkins and he was one of my trusted tweet sources.  He shares his personal experience as an attendee on his own blog, Perspicacity.

Dr. Julie Gralow was my other trusted tweet source and she may be providing additional information for the #BCSM site.  As of now, it's not posted yet.  I'll update as needed with appropriate links.  And here is the update from the #BCSM site, as promised.

The audio tapes directly from the stage presentations can be found here.  Without the slides, they can be a bit difficult to understand but if you want to hear the words as they were spoken, that's the link to click.

Breastcancer.org has podcasts from each day.  They can be found here, here and here.  Those are easy to understand.

From Dr. Jay Harness and Breast Cancer Answers, the mentor session that was live streamed is located here.  If you go to the very end, you will hear Dr. Steven Shak, the founder of Genomic Health (Onco-Dx, anyone?) saying hello to me.  Technically, he said, "Hello New York."  I was NY.

The video links are in excess of three hours.  The BreastCancer.Org videos are approximately 30 minutes each.  The Hot Topic mentor session is about 90 minutes.

Between the reading and the watching, you have plenty to come back for over the next couple of days.  I will be out and about.  I have a bit of shopping to finish and this year, no worries about that tree.  It's decorated.  With ornaments.

Last minute errands this year:  finish my shopping and wrapping all of the gifts.  At least I have the wrapping paper and the tape.  Now to find the sharp scissors.

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ADDITIONAL ADVOCACY PATHS BECKON

I said "more tomorrow" and I'm delivering on my promise.  There was so much swirling around on twitter on Thursday, I'm surprised I remember any of it.

Somehow, I managed to remember the important stuff and each of these stories are important.  And on some level a disgrace, shameful.  They are completely unrelated but they've both managed to make me sit up and pay attention.

The pictures below were in conjunction with a news story.  In the first sentence, it says "Despite....national pleas for more talk about mental health, serious reform efforts are struggling to get attention."  I URGE you to click to the CNN blog.  It's short and it's sobering.  A proposal was being unveiled in Congress.  Mental health reform.

This is what the room looked like when the Representatives took the stage.  No surprise there, I suppose.  After all, until mental illness is viewed as a DISEASE of the brain, the general mentality is that people can just snap out of it.  In fact, I was beyond outraged at a blog written by a doctor suggesting that those complaining with depression and anxiety needed a little perspective.  Send them to a third world country to dig latrines.  I kid you not.  And this woman not only contributes to the very well respected Kevin MD medical blog, she has her own blog which appears to have a spiritual angle to it.  Talk about disingenuous.

I was really angry when I read the Kevin MD post but in the grief of Sandy's death, compounded by the frenzied week of following San Antonio by way of New York, I never got to address that blog by Emily Gibson.  After my experiences earlier this year with my friend and my chance meeting with the director of the National Institute of Mental Health at the Faster Cures meeting, I may turn some of my attention to the area of mental illness advocacy.

I'm not going anywhere, but I may be redividing my time to focus on something about which no one seems to care.  Until tragedy strikes.  I can't sit on the sidelines.  I don't know how or what form this advocacy will take but I just know, this is a patient population that needs a voice.  And I have a voice.  And I'm not afraid to use it when necessary.  That's a stay tuned situation, I'm still working it all out in my own chemo damaged brain.  See, it all ties together.

Eight reporters in total.  Two asked questions. 

On another note, back to San Antonio and breast cancer.  Yesterday, the cancer agency of the World Health Organization issued a report and the findings were abysmal.  I saw this tweet from a doctor, yes a doctor, from the San Antonio Breast Cancer Symposium, where the crowd should be savvy and know the truth.

WONDERFUL statistic: 98% of US women DO NOT die from breast cancer!!!

Yes, that pissed me off.  Royally.  Then, there was another tweet about the mortality rate from breast cancer dropping 20% in the last decade.  I'm not going to hunt that one down.  The only thing I know is that I replied citing the information in Clifton Leaf's book.  I say with earlier diagnoses of cancers that we know will not be problems still being counted in those statistics (and RIGHTFULLY SO since there is still no definitive way to determine whose DCIS should be treated) we must resort to the raw numbers.  Per 100,000 women.  Save me the typing.  Go back to the blog where I explained my rationale after reading Truth In Small Doses.  Bottom line if you don't want to click.  We haven't budged.

I want to know under which rock these people reside?  Death is a problem.  And it's one we can't solve.  Thus, the biggest push is to be truthful.  We need an honest analysis of the metastatic community for starters.

And now, a new problem.  Yesterday, while SABCS was well underway, The WHO report on cancer was released.  The only cancers singled out for their own sub sections?  Breast and cervical.  Globally, breast cancer has seen a "sharp rise" in both incidence and mortality.  San Antonio is a global conference so this would have been a worthy conversation if the report findings were announced even a day or two earlier.

Where we go from here?  I don't know, but there is much on the table and clearly there is still much work to be done.

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SORTING IT ALL OUT - HEADLINES AND HYPE

The San Antonio Breast Cancer Symposium continues through today and the official closing is tomorrow morning.  I've been glued to a twitter feed for days.  I've left the house to run errands (barely) and I've managed to maintain my weekly exercise/yoga routine (essential).  Aside from that, I'm walking around with a laptop in one hand as I prepare food or do anything else.  Including when I jump in the shower.  The laptop stays out, but it's there for me to read as I'm wrapped in a towel.  Here's where a shout out to the young man in the Apple Store is in order.  I just replaced my laptop and he convinced me to get a MacBook Air.  I can cradle it in my left arm as I'm doing other things.  I think my phone may be heavier.

Have I learned anything?  Yes.  Themes are emerging, headlines are being splashed, studies are being hyped and my head is spinning trying to decipher all of it in ways that I can understand.  Over diagnosis and over treatment was big on Tuesday. This has been a topic of conversation for months.  I found a good video which (if I recall) was a fair (as in even-handed) assessment taking all sides into consideration.  My take away.  We can cease and desist in perfecting imaging techniques. When mammography works, it really works well and when it doesn't do such a great job, perfecting it further won't really help those whose cancers are hard to see on mammography.  Enough with this need for earlier and earlier detection.  We got the early detection part down, we need to get to the biology of the tumors, to find ways to interrupt metastasis, prevent metastasis, prevent the disease altogether.

And that's where the splashy headlines began.  Anastrozole.  The doctors and researchers tweet using the chemical names.  To you and me, that's arimidex.  The headline in ASCO Post reads,

Anastrozole Reduces Primary Breast Cancer Incidence by More Than 50% in High-Risk Postmenopausal Women

In English?  There was a 2% difference between the two groups of women, those who took the real stuff and those who received a placebo.  Since 2% of the women taking arimidex were diagnosed with cancer and a whopping 4% of those taking nothing were diagnosed with cancer, there's your 50%.  Are you still with me on that?  What does it really mean when you cut your risk in half?  Line up ten women.  Do nothing, four of them will get cancer.  Do something and just two of them will get cancer.  That is a "statistical significance" which results in the aforementioned ACCURATE, yet horrible headline.  Not really a fan.  The side effects were discounted by the presenter who claimed they believed that 90% of the complaints were not related the to drug.  Something was said about the dangers of the other already approved risk reducing drugs (tamoxifen) in comparison to arimidex.  There are dangers and risks associated with both drugs.  Period.  The End.  There are side effects and the joint pain is real.  Period.  The End.  And the presenting doctor is on the speaker's bureau for Astra Zeneca who was one of the funding sources for the study.  Period.  The End.  Bottom line?  Until the presentation, all presentations, are peer-reviewed, they are merely presentations.  The full research findings, not just the slides with the great looking graphs, must be reviewed.  Then, a more accurate assessment will be shared.  And, if I have access to it, I'll likely find something that merits mentioning.  Especially when the presentation was so dismissive of the side effects.

The last presentation yesterday afternoon was one that was of great interest to me.  The presentation was about the use of bisphosphonates for patients with early stage disease to prevent recurrence and death.  Specifically, they looked at an oral medication that is not approved for use in the US (but is used in Europe) and zometa, which is an IV administered drug that is approved for use in metastatic patients.  The numbers were impressive.  The benefit of adding this to was equal to that seen with chemotherapy. They looked at thousands of women in over 20 different studies and combined all of the information.  After analyzing the information, it appears post menopausal women (naturally, surgically or due to ovarian suppression) will likely see a new standard of care within a year from what the play by play doctors had to say.  Again, this must go through the peer review process before there will be a change.  It is not approved for use in this setting.  It is, however, used for the treatment of osteopenia and osteoporosis.  I am six years post treatment but I also have six years of bone loss from the femara I have been taking.  I just had a bone density test.  I had osteopenia in 2006 when my base line bone density was done.  It has gotten worse on all subsequent tests.  Although no medication is without side effects, this is something I may discuss with my doctor.  Unfortunately (for him), I will be doing this during my MOM's monthly appointment next week.  After he finishes reading scans, I'm going to harass him.  And I'm certain by the time next Friday rolls around, he will have been harassed by enough women that I'll get a canned answer.  Wouldn't you all like to be the fly on the wall for that?? Joking aside, I know I won't get a canned answer, I will make my own appointment to review everything and make an informed decision weighing the benefits against the risks because that is what it means to be engaged in one's own medical care.  As of now, there's still no story by Reuters or the AP or any other news outlet weighing in with a Hyped Headline but I'll add a link when I see the first one.  I'm a bit surprised it's taking this long.  That was a pretty big deal, was big buzz.  Go Figure.

The most thrilling moment of the day came later in the evening.  Each day, there are mentor sessions. A panel of exceptional doctors is assembled to discuss the daily presentations with the advocates.  Thanks to the Alamo Breast Cancer Foundation, the mentor session was streamed live.  It was the very first time they ever did that.  Does it sound weird for me to say that I was as excited as a kid in a toy store?  I hit the link, found Lori @regrounding, couldn't find the link for the live feed.  It gave us a few moments to catch up.  We were tweeting buddies in San Antonio last year.  Roommates at every conference we attended together and with Jody @jodyms, we were running around San Antonio just twelve months ago.  When we located the feed and saw the familiar table of panelists, I felt like I was at one of the advocate seats.  Technology!  I had a question about that zometa study and I knew another buddy was in that room.  I sent her a tweet, asked her if she would ask a question for me.  The very last question they took was from Terry Arnold.  Terry is the founder of The IBC Network Foundation.  Inflammatory Breast Cancer.  Never heard of it?  Poke around Terry's site.  For the first time ever, there was an entire session dedicated to the discussion of IBC.  Terry stood at the microphone and said she had a question from New York.  My question.  And that was pretty damn cool.  Even the panel was amused.  And Karuna, from Breast Cancer Action who was also in the room, and at the microphone asking the hard questions, sent me a message to let me know they were cheering from far far away.  Yes, technology. Some awesome stuff there.

And THAT brought back a flood of memories, of San Antonio 2012, of dinner on The Riverwalk with Jody, me, Lori, Karuna and Gayle.

Tomorrow?  There is a crisis that is not being discussed in San Antonio in the form of a report that was released just yesterday by the World Health Organization.  And there is a mental health crisis in this country, too.  When government representatives attempt to do something for this community, people really must sit up and LISTEN.  More tomorrow.....

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SANDY'S LEGACY WILL LIVE FOREVER

Her smile was bright, her wit was sharp and her heart was as big as the universe.  In Pink Ribbons Inc, she said:

“It’s almost like our disease is being used for people to profit.  And that’s not okay.”

Sandy Kugelman died on Friday and the world is a little dimmer today than it was last week.  This has proven to be a most difficult post to write.

Sandy was my friend.  We never met in real life but as I've repeated so many times, It Doesn't Matter.  It hurts.  We connected deeply and we have been talking offline for about 18 months.  It started when she wrote the words "thank you AnneMarie" in a public forum where I opened my big mouth.  It was a debate about Pink Ribbons Inc and I was trying to speak as a Fearless Friend.  I was stunned to see her comment and her validation meant so much.

I shared a little about Sandy in a blog I wrote just two months ago.  More than the blog, I hope you will read the article in Austin American as it paints such a beautiful picture of how she lived, of who she was.  My friend, Grazia wrote a post for her Italian audience.  I said this piece was difficult to write and I initially forgot to include the link.  For Grazia, it's personal, too.  My global buddy.

Want to hear Sandy?  At the 1:10 minute mark of the trailer for Pink Ribbons Inc, she speaks those words quoted above.  At the 1:50 mark, Mari, another member of the IV League Support Group spoke other very telling words.

"We're living.  We're human beings.  We're not just a little pink ribbon."

When Mari died in October of 2011, Sandi was heartbroken.  Mari's death was recounted in this blog post by a family member and Sandi shared her sorrow in a comment.  The first time I connected with Sandy, she told me about Mari.



This interview from October 2009 is a must listen to.....



She pretty much nailed every aspect of what I hear when I listen to those with metastatic disease talk of their fears, their frustrations, their need to connect with the community.

True to form, Sandy's caring spirit lives on in her wishes which were shared on her Facebook page.  Even in death, Sandy made sure her voice would be heard on behalf of those living with metastatic disease and the 30% of us early stagers who will develop distant recurrences.

May there always be another treatment option and may there come a day when the treatment options are not debilitating and afford all metastatic patients long and full lives.

I miss that smile.  I miss that wit.  I miss Sandy.

"In lieu of food or flowers, Sandy asked that donations be made to METAvivor.org, an organization she strongly supported for its emphasis on meaningful cancer research, rather than 'Pink Ribbon' breast cancer organizations."

Just a note: The San Antonio Breast Cancer Symposium is this week.  I expect this blog may be a bit on the quiet side as I watch the news coming from Texas.  Less than 90 minutes from Austin, where Sandy was laid to rest this weekend.

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