#dnafn

I am trying to be cool, so I made up a hashtag.  I wonder if I am trending... whatever that means!  Anyway, my hashtag stands for Disaster Narrowly Averted, For Now!

At left is my radiology report from Monday, discussed with Dr. Raish yesterday. To summarize, it says, "bla bla bla bla "NO CURRENT EVIDENCE OF METASTIC DISEASE" bla bla bla bla bla.

Dodged another bullet!  I am six weeks past my last chemo treatment, feeling pretty great.  I will continue having infusions of Herceptin (trastuzumab) and Perjeta (pertuzumab, the wonder drug) every three weeks until my scans show disease progression, which will happen sometime but for now I am trying to feel just a little bit normal for a while. After seven months as a stage IV cancer patient (and over two years of heightened cancer anxiety) I am trying to let out the panicked breath I have been holding.  I am willing to hope, and to attempt again to live my life without always waiting for the other shoe to drop.  I have no illusions, of course, because that is me (realists unite!) - I will always have metastatic breast cancer, for as long as I live.  I will be in treatment for it, for as long as I live.  But, to emulate an amazing woman in my support group I will allow myself to judge the state of things by how I feel, which right now is relatively well, despite my diagnosis.

Treating MBC involves drug regimens in order (first-line, second-line, etc.).  Inevitably after some unknown period of time on each regimen, the cancer adapts and changes and progresses, or the treatment is no longer tolerated by the body.  At that time, a new treatment is begun, hopefully after discussing options with one's oncologist and family, and making decisions together as a team. According to the Cleopatra study, which I have discussed before, the median survival time on this regimen is almost five years. This means that if I am lucky, I could have at least five chemo-free years before disease progression.  There are several good options available for down the road, and if the recent past is any indication (Perjeta was not an option just two years ago; Kadcyla was still a trial drug just one year ago), the longer I hang around the more options will become available. 

This may be more optimism than you are used to from me.  I don't want to go too far over the edge so I'll end this post.  This is the other side of scanxiety, a nice place to be.

The Calm After the Storm

The social worker I see on occasion at my Portland clinic said that it is common for people in my situation to go into survival mode during the initial crisis and treatment for metastatic disease.  You know, you put your head down, embrace the suck, and do what needs to be done.  It is clear that this is exactly where I have been since late May.  I research, I write educational pieces (read: unemotional pieces), I research, I think logically about next steps, and I conserve energy to manage my treatment effects.  I’ve been having chemo since earliest June and haven’t spent much time imagining what happens when the initial crisis management phase of this shitstorm actually goes away, but it is about to ratchet down a few notches.  After eight Taxotere treatments (the actual chemotherapy drug in my regimen), I am confronted with the simultaneously very desirable and very terrifying break from it on which I am now embarking.

Of course I want to be off of chemo.  Chemo SUCKS.  I am ready to lose the corpse-like taste in my mouth, the intermittent nausea and continuous exhaustion, the way I am out of air just going down the driveway for the mail and then back up, the prickly, insanely itchy skin, the baldness, the lack of all the other hair, the runny, irritated eyes and nose, the peeling fingertips, the diarrhea, and the feeling (reality?) of having aged fifteen years in the last two.  But the chemo is killing cancer, has killed a bunch of cancer a second time.  Logically I know that the two targeted biologic drugs play a large role, but what if that role isn’t the starring role?  Ideally, continuation of Herceptin and Perjeta every three weeks will give me some undefined length of time to enjoy life without chemo and without enough cancer in my system to kill or alter me too terribly.  The trouble is no one has an inkling of how long that might be.

Aside:  Can I say – I simply cannot imagine being a medical oncologist.  I would know exactly what to do to treat a patient, and if I were an excellent MO I would be really good at talking with my patients and answering their questions honestly.  I would be up on the latest treatment advances and clinical trials, and would be confident I was offering my patients the best research and data-driven treatment options.  And yet, as much solid data are behind these treatments, I simply would not know whether and how dramatically my patients would respond.  Basically it is all a crap shoot.  And as a doctor who has taken an oath to heal the sick, I would know just how little is in my control, no matter how brilliantly I do my job.  Like my patients, I would live scan to scan.

According to the Cleopatra Study results, adding Perjeta to Herceptin and chemotherapy as a first line treatment of metastatic breast cancer increased median overall survival by 15.7 months to 56.5 months, an unprecedented and definitive increase.  The logician in me cannot leave well enough alone and reminds me that this is median overall survival.  Some of us will get more, some will get less.  None of us making our bargains with treatment knows to what decimal point our own lives will measure out.  And neither do our doctors.  It is what it is.  

So… on leaving the initial crisis mode:  As the sympathetic nervous system (fight! flight! both!) calms down, the parasympathetic nervous system takes over (maybe the bear that was chasing me is gone), restores normal heart rate, and slows the adrenaline.  Obviously this is somewhat metaphorical, as I have not been living for six months in a literal “fight or flight” mode.  It is just a little bit fun to try to recall my physiology lessons.  

Now, with the initial chemo winding down (hopefully for a while), there isn’t the distraction necessary to avoid acknowledging the certain shortening of my life.  My social worker cautioned that as the initial difficult treatment period ends, Other things might come up.  Like, oh, feelings.

This is the problem of leaving the bomb shelter, however temporarily.  Now there’s time to think, maybe enough energy and brain space for a change to contemplate the existential issues surrounding my disease.  Every few weeks it seems, someone in my online support group dies.  There is not the remotest possibility of becoming accustomed to this. One day it will be me. 

It’s been real (as we used to say when we were cool) perfecting my eye drop accuracy and eyebrow pencil proficiency.   

It’s been real distracting myself with the daily care of a tiny baby puppy.

It’s been real reading reports on treatment advances and study outcomes, making myself feel coldly intellectual.

It’s been real feeling sick, tired, and mopey, hunkered down and hermit-like, avoiding as much as possible the well-meaning but pitying looks of people I encounter.

Goodbye to six months of chemo-land, and a shy and reluctant hello to those Other things, whatever they may be.      

Slice of life of a long-term cancer patient - me, that is...

Here is the email I wrote to my nurse navigator yesterday.  As my last gasp in attempts to educate about the real world of breast cancer before October is done, I share this with you.  I know from my support group that my story is not unusual or exceptional.  The specifics may all be different but the gist is the same.  This all said, I have had some wonderful service as well from some amazing and wonderful people during the last two years.  There are plenty of positives for each negative I address.  The biggest positive in all this is Maria, who is mentioned in the diatribe below.

Side note - I did have my infusions today at my local hospital which was great.  I got to swim before, walk dogs after, and ditch the four hours of driving so that was cool.  Everything was uncomplicated. 

Side note #2 - My mom likes to chat after my chemos and make sure everything went OK.  Her words of wisdom today (very wise I might say):  "Don't forget to take your marijuana!"

If you have the stamina for this reading I will be surprised.  I and therefore my writing was torked by steroids yesterday!

October 28, 2014

Dear Annette,

Thank you for talking with me yesterday.  This letter will likely be more detailed than you are looking for; however I want to emphasize both the length of time that these issues have been going on, and look at two different timelines – the infusion issue and the general scan and other procedures issue.  So… away we go.

In general, the issues with the office at OHSU where I see Dr. Raish come down to a lack of communication with Columbia Memorial, a lack of response to requests by Columbia Memorial (CMH), and a lack of efficient communication with me, which includes two incidents of being treated pretty disrespectfully by Sonia and another person whose name I do not know at the OHSU Oncology office.

When Dr. Raish was my provider at CMH, at the end of appointments either his nurse or a medical assistant checked in with me, confirming the procedures that Dr. Raish had ordered and for when, and most of the time handing me the appointment cards right then and there for those procedures.  If they needed to delay making those appointments for some reason, they informed me when they would call me with the information and then did so.  I have had no such service at OHSU.  Dr. Raish, who is really the best doctor I have ever had (this tirade is not about him) tells me what I will need and when prior to a particular appointment with him, tells me he will order said procedures (e.g. scans, echos, bloodwork), and we say goodbye.  It is never clear to me whether I or someone else should call (and call OHSU or CMH – I never know) to inquire about these procedures or schedule them.  After several phone calls I made attempting to wrangle how it works I was told in no uncertain terms to stop trying to take care of these appointments myself.  Authorizations hadn’t happened yet and in theory the OHSU authorizer Sonia did not want me to have to pay out of pocket.  I believe the phrase “Well, if you didn’t call here so much…..” was used by either Sonia or the other person at the desk, I am not sure. 

All that said, I will share the two above-mentioned time lines of trying to resolve these issues to make very clear what the stressors are for me, a metastatic cancer patient who, as you can imagine, has enough stress already to go around.

August 4, 2014:  Infusion and visit with Dr. Raish.  Jon and I speak to Dr. Raish about whether it is possible to do some infusions in Astoria, as that would keep us from driving into Portland every three weeks when some of those visits do not necessitate an appointment with Dr. Raish.  He says that that should not be a problem, and that he would contact Maria, nurse navigator at CMH Oncology.

I am called by CMH and we clarify that I am not transferring care but hoping just to have some of my infusions there.  I am told I need to have an initial visit with Dr. Lycette to set the process in motion. First available appointment is September 8. I take it and we establish then that I can go ahead with the plan of infusions.

September 13, 2014: I should have had an infusion as we had planned, on the 16th at CMH but Maria informed me that she could not get the authorization without making it a permanent switch and she was rightly reluctant to do that without further investigation.

September 16, 2014: Jon must unexpectedly take another day from work to take me to Portland for infusions.  We speak with Sonia to establish where the problem initiates as if it is with MODA I can make calls and appeal my case with them.  She says that because I take Herceptin, ICORE needs the infusions to be in one place.  She also comments that a change of venue would have to be reauthorized every time.  So, we are not sure if it is actually impossible or would just be a lot of work.  She concludes that I am not allowed to switch back and forth.

October 7, 2014: We ask Dr. Raish if it is a good idea to switch the infusions permanently to CMH.  We are unsure as to how often I need to see Dr. Raish.  We tell him we are not allowed to have infusions at CMH and then have infusions at OHSU on those dates I see Dr. Raish.  He says he has “not heard of this problem in his entire career.”  In any case, we three decide to do infusions in Astoria as visits with him should become less frequent.  He tells us he will go ahead and order the switch.  I receive no other instruction.

October 16 or 17: I call Maria (CMH) wondering whether I am supposed to call and schedule or whether she has received orders to set me up at CMH.  She has not received any orders.  She began then to work on acquiring orders and collecting proper paperwork to set me up for my October 28 infusions.

October 22, 2014: I call Maria, as I am beginning to worry about my infusion date approaching.  She is still attempting to get required paperwork with the signature required by CMH and has not had a response. 

October 27, 2014: I planned to call Maria, as I needed to pre-medicate with dexamethasone if infusions were to happen on the 28^th (today – guess what? I am not there getting infusion today, my scheduled three week interval – I am here at home typing this long, long letter instead!).  Maria tells me I can indeed have my infusions on the 28^th or the 29^th.  I go home and take 8mg dexamethasone assuming I am having infusions today and am just waiting on a call for a time to show up.  Maria calls in the afternoon.  As the process has taken so long and taken us right up to the wire she is reluctant to guarantee that my Perjeta will arrive in time to do the infusions today and it would be safer to schedule for the 29^th.  I cry (an infrequent occurrence) on the phone with Maria out of sheer frustration.  I then call Annette.

Basically, in three weeks OHSU people were incapable of sending the order in the first place, making the process a mad rush to the end, and did not send requested information in a timely manner.  I am uncertain as to whether they realize that all of this paperwork is for CANCER PATIENTS who need care when they need it!  The sheer stress of wondering and trying to work through these issues (it should not be my job to do so) is UNACCEPTABLE.

Timeline 2 – Re: scans and echos

I have been perplexed when it comes time to schedule scans and other procedures which I do at CMH.  Yes, scans are stressful enough without wondering whether I am going to get an appointment slot by the time someone at OHSU sends the orders.  I have been more proactive than the OHSU people appreciate, as after a bunch of time goes by where I hear nothing (again, in my experience with Dr. Raish in 2012/2013 this was never an issue – I knew where I was going and when before I walked out of my appointment).  Here is where the comment about me “calling so much” came into play.  However, I feel if I do not advocate for myself orders are not being asked for or sent in the first place.  Here is the latest example of this issue in play.

September 16, 2014:  Dr. Raish wants me to have a CT and an echo prior to October 7 appointment.  He kindly suggests that instead of having the scan on a Friday and having the stress of the weekend that we do the scan on Monday the 6^th and then have appointment Tuesday the 7^th, getting the results as fast as possible.  I like this idea.  During my infusions on this day an infusion nurse (don’t know name) states to me that she sent the orders for the echo and CT. 

Again, I wait for the calls I am supposed to wait for with scheduled appointments.  They do not come.  I know appointments at CMH will fill and as I need the CT on a specific date and as it is one with an NPO order I want to get in as early that morning as possible, so once again, I begin to worry.  A week or week and a half goes by.  I call radiology at CMH and there is a spot left in the late morning for CT on the 6th.  He nicely puts my name on it while he looks for the order.  No order.  I also schedule echo, which could have been done any time during those three weeks.  No order there. I call Sonia, am scolded once again, as I am not supposed to schedule myself.  I am told it will result in me paying out of pocket and the CT will not be authorized by MODA until the morning of the 6^th, 60 days from the prior CT.  I do not understand how it can be scheduled the morning of.  This CT will tell me if my regimen is working or not.  This is a highly charged scenario.  I am told it will work out.  Thankfully, nice rads clerk at CMH is willing to hold the spot.

I call OHSU about the echo a few days later, as there is still no paperwork at CMH.  I am told once again to stop doing these things.  I clarify with the person on the phone that indeed I should cancel the appointment and wait to be called.  Ok, I cancel it.  And wait. 

October 2, 2014:  Afternoon – I am concerned as I have no echo appointment and my options are dwindled to Friday or Monday afternoon.  I call OHSU again.  Yes, I am the crazy lady that keeps calling.

October 3: All day I hear nothing.  At 4:57 I get a voice mail (I was in the bathroom!) that says I have an echo at 11:00 Monday morning, which happens to be the time of my CT.  I call right back but Cardiology clinic has closed.  I have to wait until Monday and hope I can shift the echo to the afternoon.  This rendered the entire day Monday a day of drinking contrast and having two separate contrast IVs. 

October 6: I am sitting in the rads waiting area drinking my two bottles of contrast beverage and I can hear the rads clerk on the phone, attempting to have someone fax a signature so the “patient” can have scan.  He mentions patient is In the Waiting Room at this Moment Drinking Contrast Beverage.  I know this is me as I am the only person in the room, and I am indeed drinking contrast.  More stress.  I do end up getting my CT.

Further, I would like to say that Dr. Raish has greeted me more than once in the exam room and has had to leave the room to “track down” radiology reports.  In my training as an MA I was trained unequivocally to have labs, radiology, anything regarding the patient in the doctor’s hands before he/she went in to see the patient, so he/she could read, process and figure out how to explain the information to the patient. 

I need to tell you I am already stressed about the scan that needs to be scheduled prior to my December 9 appointment with Dr. Raish.  I have no expectation of getting an appointment in a timely manner.  I cannot believe that MODA cannot authorize a scan with a date on it that is within the rules of authorization prior to said date, so that the appointment can at least be set in advance.  Though I am just a cancer patient lying around I still do have a life, and like everyone else I like to have my appointments scheduled as far ahead of time as possible.

Lastly, you should know that because I have had to permanently switch all infusions to CMH I will spend a day going to Portland to see Dr. Raish on December 9 and another day on the 10^th at CMH getting infusions.  Ideally, of course, I would do it in one long day in Portland but that is not to be.  I do not think I am asking too much by wanting to stay with my original oncologist, Dr. Raish, through these difficult times, and at the same time believing the system should work as efficiently and conveniently as possible for the PATIENT.

Annette, this is a lot but I needed to say all of it.  Thank you for your time and being willing to listen.  Take care,

Laura Snyder

 

Iatrogenesis

Definition - inadvertent complications induced by medical treatment or the activity of physicians.

A year ago, I was in school working towards a medical assisting certificate in what I now look back at as that pleasant, productive, treatment-free, "cancer-free" year.  One day during my medical terminology class we came to the root word "iatro-" meaning treatment.  When paired with the suffix "-genic" (caused by), we have iatrogenic.  The example that day was "iatrogenic rib fracture due to the administration of CPR."  As I tried unsuccessfully to sit still, shifting in my chair, leaning forward and back and stretching my torso, I inwardly acknowledged the irony of me sitting there trying to breathe.  At that time I was struggling constantly with severe shortness of breath and intermittent pain on my right side due to radiation-induced scarring in the upper lobe of my right lung, as well as several radiation-induced rib fractures.  Iatrogenic, indeed.

The whole metastatic nightmare aside for today, survivorship of breast cancer - really any cancer - is not necessarily the pretty, robust, healthy Pinktober picture.  I recently read an article by the mother of a childhood cancer survivor.  Of course, she was beyond ecstatic that her daughter had survived, but she wanted the reader to realize the cancer "journey" does not end with the news that one is cancer-free.  This child had been hospitalized repeatedly for multiple iatrogenic issues and was not and would not in the foreseeable future be a healthy child.  Emotional, physical, and financial stresses can be givens in this world of survivorship.

It is touchy to be in that place.  I was in that place last year. Who wants to complain about surviving a killer disease?  Who wants to seem ungrateful or unappreciative?  Yes, ultimately being alive is the desired endpoint of treatment.  I would much rather be here, "above ground" as they say, than the alternative.  But being alive after cancer treatment can come with myriad conditions that affect quality of life moderately to severely.  Many survivors have an aversion to asking for help with or even discussing these problems, as they seem somehow "small" compared with oh, you know, dying of cancer.  Thus survivors may feel themselves to be physically and/or psychically broken or struggling, but don't want to rock the boat with what seem in the big picture to be "small problems."

Here are some examples of what the rosy cheeked-survivors in all of the October PR may be experiencing:

• Radiation-caused rib fractures:  All of the literature call these a rare complication.  My oncologist and the radiation oncologist said they could count on the fingers of one hand their patients who had these.  I am one of them.  At this reading my scans show five now-healed fractures.
• Scarring of tissue in the radiation field: I also have experienced this, in my right lung and right pleural lining, and will continue to find breathing difficult because of it.  As my plastic surgeon (a survivor himself) said to me - "Radiation....  It's forever."
• Post Mastectomy Pain Syndrome:  According to a study detailed in the American Society of Clinical Oncology newsletter, "20-68% of breast cancer patients have chronic postoperative breast pain, commonly known as post-mastectomy pain syndrome (PMPS). Usually this is neuropathic in origin and can begin in the immediate postoperative period, but may appear 6 months postoperatively or later. It often persists beyond the normal healing period, sometimes years."  The cause is unavoidable surgical damage to the T4 and T5 nerves where they exit the chest wall.  I am one of these patients as well.  After several weeks- and months-long bouts of debilitating pain my damaged intercostal brachial nerve has settled with the help of gabapentin, which I will likely be taking for the rest of my life. 
• Chemo brain:  Some people think I'm joking when I reference my chemo brain, and well meaning people commiserate with me saying "me too! I can't remember a thing any more!"  Technically known as post-chemotherapy cognitive impairment (PCCI), this affects up to 75% of people during treatment, and up to 35% have issues that continue for months after treatment has finished.  Concentrating on a task, retaining information, inability to focus on reading, remembering what someone just said, a constant feeling of fogginess - these are some of the symptoms that plague me and others in my shoes.  I did not feel completely over it almost a year and a half after the end of my first chemo regimen, and now heading into my sixth month of chemo for MBC, I feel in possession of a very small fraction of my previous intellectual abilities.  I owned a book shop for thirteen years but struggle now to read at all.
• Rapid, forced menopause: The severity of menopause symptoms is heightened by the abruptness of what is in the natural setting a potentially years-long process.  This can be a result of hormone suppression to treat hormone receptor positive cancer (treatment ranges from a daily pill to removal of the ovaries) or chemotherapy or both. While being slammed into and through the menopause process is difficult for any woman, it is especially difficult for younger women with breast cancer, of which there are many.  A process that in the natural setting can take years happens instantly (with oophorectomy) or in a few short months of chemotherapy.
• Fatigue: Please see this post for an excellent and accurate description of cancer treatment fatigue. 
• Peripheral neuropathy: I don't have this one!!! At my worst my finger tips tingle, peel, and crack at some point during every chemo cycle.  Severe pain or numbness in hands and feet can seriously affect activities of daily living, like picking up objects, buttoning a shirt, even walking.  At its worst heart rate, blood pressure, and organ function can be adversely affected.
• Complications of breast reconstruction:  I have been really lucky on this front.  I had one surgery to both remove my breasts and replace them with implants.  This is not the norm.  Though my reconstruction site has never been comfortable (I had no idea it would feel this way almost two years out), I have had no moderate or serious medical complications.  I read about women frequently who have been in and out of the operating room with complications of reconstruction, who have had surgeries into the double digits, who have had infections, inordinate amounts of pain, undesirable visual outcomes.  Cancer patients make rapid, difficult choices about surgery and many other things as well.  As I have written before, we choose constantly between extremely undesirable things (no breasts or fake breasts is just one example, and one of the more benign examples at that), and yet we have to choose.
• Anxiety: "People who have not confronted a life-challenging illness may be perplexed by the residual anxiety in patients, long after they have successfully completed treatment," states Jan Hoffman in the NYTimes Well Blog on the subject.  We're wired to respond to threats, and cancer is a threat.  For survivors, there is always the threat of its return. Data suggests that spouses are also prone to heightened anxiety after a cancer diagnosis and well into the years of survivorship. 
• Heart problems:  Some of the drugs that treat cancer carry the risk of damaging the heart muscle over time.  One of my drugs, Herceptin, is one of these.  Regular echocardiograms monitor the heart function and if it becomes compromised a potentially life-saving drug is off the table.  Additionally, the patient has the added physical and emotional burden of requiring treatment for cardiomyopathy.  Radiation can also damage the heart. 

I know I am at the tip of the iceberg here, as far as breast cancer's iatrogenic conditions.  As October nears its end, I wanted to once again address some of the uncomfortable and less-discussed issues around breast cancer, even when that breast cancer is in the probable 70% that do not recur.  I think that even when I felt I might be a survivor, I never felt like I was "done" with it. And I know that I am not alone. 

"Dramatic response at the far end of the spectrum"

That was pretty nice to hear from Dr. Raish on Tuesday.  He is really pleased with my response to this regimen.  He also called it not only a good, but a dramatic response.

After six rounds of Taxotere, Herceptin, and Perjeta, over the course of five months, there are no visible cancerous lesions in any of my lymph nodes, in my lungs, or in my liver.  There is a 6mm lesion (probable cyst) in the left lobe of my liver.  Since I'm ultra-paranoid and a major worrier (plenty to worry about in my world!) I looked back through all of my radiology reports mining for the left lobe liver lesion.    The good news is that it has been there, unremarkable and unchanged, in every report.  I remember going over my first CT scan with Dr. Raish in the fall of 2012.  Me being me, I freaked out about the thing in the liver, described in the report as "unremarkable." He reassured me that unremarkable is a very good word in a radiology report.  In the last couple of years I have learned to read these things and let the pieces go that don't say things like - oh, for instance "likely metastases."  But I still had to check out the liver thing.

There is a woman in my support group who had eight Taxotere before continuing with just the HER2 therapies.  I brought the question in of whether there might be a difference between the six or the eight treatments.  Dr. Raish said it is partly a question of tolerance of chemotherapy.  In the all-is-relative world of Cancerland, though I bitch and whine, I tolerate the chemo well.  I am fortunate to have very little to no neuropathy, and am as functional as I can be.  Since in the recent Cleopatra Study (google if you are into things like this) the average number of Taxotere treatments was in fact eight, we decided to keep going.  So at this point I have had seven and will, barring problems, top it off with one more in three weeks.  The Cleopatra Study looked at the regimen I am having, in the metastatic setting, and showed excellent results.  

I also brought up the question of hormone receptors.  The current incarnation of my cancer is 3% estrogen receptor positive and 60% progesterone receptor positive.  At the end of this chemo we will test my blood for the presence of either of these.  It is assumed that I am post-menopausal, but it will be good to confirm this or know otherwise.  At that time we will discuss hormonal treatments (not Tamoxifen, as that was a bust) - probably an aromitase inhibitor.

In addition to the CTs I had an echocardiogram last week, as Herceptin sometimes damages the heart and must be discontinued.  Fortunately my heart function is still good so we can continue the medication.  The procedure was not fun.  The tech decided after around 45 minutes probing around that he couldn't see well enough (inducing mild panic attack) and I had to get my second contrast IV of the day.

I checked in with Dr. Raish about the turmeric and the occasional pot, and my lovely oncologist's response was, "Whatever you're doing, keep doing it!"  I am pretty neutral on the idea of any influence I can have over this disease; I feel extremely lucky to be having a good response to
treatment.  For whatever random reasons, some people respond well and some don't.  But... just in case, I will keep on keeping on with yoga, swimming, walking, turmeric milk, and the elimination of cow dairy and most refined sugar.

Word of the Day: IATROGENIC - this means caused (-genic) by treatment (iatro-).  I am fortunate to have had virtually no symptoms or conditions that are or were caused by cancer.  However, like the majority of breast cancer patients, there have been Plenty of iatrogenic issues.  More on that another time, but for now, my most surprising and most random iatrogenic condition: the ongoing rib saga:

I'm not sure whether this is funny or not, but I will give you the rib report.  I am a rare person that suffered rib fractures on my right side as a result of the radiation I had in 2013.  The first mention of them said there were two fractures, on ribs 2 and 3.  Subsequent reports documented fractures in ribs 3, 4, and 5, with the 5th reported as chronically unhealed.  My scan from last week said, "overlying healed right rib fractures involving the third, fourth, fifth, sixth, and seventh ribs, stable."  Um.... whatever, I guess.  It explains many of the sensations I have on that entire side of my body.  

I think that's everything.  I have nothing whiny or mopy to say today!

The Elephant in the Pink Room

Just grabbing this to keep it on the blog in case the paper removes the link.  And of course because I am me so I can continue to fix my mistakes!

The Elephant in the Pink Room

In July of 2012, at age 49, I was at the peak of fitness.  I’d just completed my second Olympic distance triathlon, and was ready for more of the same in my fifties. But one month later, after the sudden appearance of a large lump, I was diagnosed with breast cancer.  It was ER+ (estrogen receptor positive) and HER2+ (an aggressive subtype marked by an overabundance of the protein HER2). Following a challenging year of chemotherapy, surgery, radiation, and the HER2 targeted therapy Herceptin, I was, according to available detection technology, cancer-free.  

Fast forward to May 2014: nine months after my last Herceptin infusion and two months after a clear CT scan, a lump appeared suddenly in my neck. I was quickly diagnosed with metastatic breast cancer (MBC) in my lungs, lymph nodes, and liver.  Scans halfway through my current treatments showed no detectable lesions in my lungs or lymph nodes, and those in my liver are much smaller.  Even if I am “NED” (no evidence of disease) following this regimen, I will continue it until it loses its effectiveness. Then my oncologist and I will determine my next strategy, because while MBC is treatable, it is not curable.

October is Breast Cancer Awareness Month.  The 13th - just one out of 31 days - is dedicated to metastatic breast cancer awareness, despite the fact that 30% of women with breast cancer will be diagnosed at some point with MBC. Metastasis is defined by its prefix “meta,” which means beyond, and the root word “stasis,” meaning a state of stability or control. Approximately 6 to 10% of initial diagnoses are Stage IV, or metastatic. The remaining cases of MBC may be detected weeks, months, or years after initial diagnosis and treatment.  

During this month’s races, fundraisers, and other awareness events, I feel like a fish out of water.  I am one of that 30% now, without the tidy story of a “battle” fought and won.  Despite the extraordinary work of advocates and the strength in the community of people living with MBC, our stories are rarely included in October’s media portrayals of breast cancer survivors.  I appreciate this opportunity to share some information about MBC.

Breast cancer localized in the breast does not kill.  It is the spread of cancer from the breast to vital organs that results in a terminal diagnosis. Metastases typically occur in the lungs, liver, lymph nodes, brain, and/or bones.  Metastasis comes to women (and men - 1% of breast cancer patients) of all ages and may arise despite the stage at initial diagnosis, whether 0, I, II, or III.   Laudable though they are, the goals of awareness and early detection do not bring to light important truths about breast cancer. According to cancer research advocate Debra Madden, “Regardless of when breast cancer is diagnosed, it is the molecular characteristics of the cancer (such as HER2 and hormonal status) that most impact the recommended treatments and outcomes.” Additionally, more and more patients are diagnosed while younger than recommended screening ages.  MBC is not a disease of people who didn’t monitor their health well enough and “let the cancer progress too far.” Though there are many factors to consider regarding recurrence risk, early detection does not guarantee recurrence-free survival.

Approximately 40,000 individuals die each year of MBC, a number that has not changed since the year 2000, per the Metastatic Breast Cancer Network (MBCN).  I am forever grateful to the scientists that identified the HER2 protein and developed Herceptin.  While long term survival rates have improved because of such advances in targeted treatment, the number of deaths has remained the same.

Though an estimated 155,000 individuals are living with MBC in the U.S., I have never seen a media focus on this group in October.  Medical sociologist Gayle Sulik notes that “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources.  Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”  And breast cancer is indeed more complex than awareness campaigns reveal.  According to the National Breast Cancer Coalition, we still do not know how to prevent recurrence or metastases.  Thus, the (also laudable) goal of prevention is impossible at this time.  As esteemed metastasis researcher Dan Welch, PhD, emphasizes:  "To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body."

There are many more unknowns. No one knows why one person’s breast cancer metastasizes and another’s doesn’t.   We know that certain cancers are more aggressive than others, but all types of cancer metastasize. No one knows why certain patients do or do not respond to particular treatments, even when those treatments are the standard of care for their cancer subtypes.  Often the level of response seems to be based on luck - very good or very bad. There is no data registry for those living with metastatic recurrences. We are absent from statistics. Those who are Stage IV at initial diagnosis are counted.  Those diagnosed at earlier stages that recur are not counted.  We in this group are counted at initial diagnosis, then at death.

The current treatment model for MBC is to try a specific regimen until either it stops being effective or the body stops tolerating it, then move on to the next, and so on, until there are no options left.  There is a public misconception that MBC has become an “easily treated” chronic condition. In truth, the treatments and choices we face are difficult and life-altering.  “Treat/Scan/Repeat” is the Stage IV mantra. We just hope that as time passes new, effective, and more targeted treatments will be developed.

The key, then, is research.  Currently less than 5% of breast cancer research funding goes to metastatic breast cancer, even though an estimated 30% of breast cancer patients will go on to have MBC.  I hope you are moved to contribute directly to MBC research and advocacy: 100% of METAvivor (www.metavivor.org) donations fund grants for MBC research, and the Metastatic Breast Cancer Network (www.mbcn.org) fights for treatments to extend life and advocates for MBC patients.  

             The facts are frightening and uncomfortable to face, but they dictate the dire need for research to prevent, treat, and one day cure metastatic breast cancer.  There can be no cure for breast cancer without solving the puzzle of metastasis.  Awareness, early detection, and prevention behaviors - all important objectives  - do not guarantee survival of this insidious and epidemic disease. The unanswered questions are unacceptable, as are the gross inequities in research funding that continue to delay answers to them at the cost of so many lives.

Reluctant Activist

My guest editorial is in the paper today.

http://www.dailyastorian.com/columns/20141002/guest-column-the-elephant-in-the-pink-room