Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH's (darling husband's) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I'm at MD Anderson for my yearly visit to the survivorship clinic. This will mark - let's celebrate anyway - my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, "I don't want to alarm you, but we need to get another an ultrasound to make sure it's benign."

I'm not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It's sneaky. The cells line up in a single file instead of clustering to form a mass.

But by the time I'm in ultrasound, where a radiologist in heavily accented English says, "Do not talk when I have needle in your neck," I realize, this is how your life changes.  I see the oblong node above my collar bone, a plump little dude, and the needle moving up and down within it.  For a moment something pierces. "So sorry," the doctor says, "I didn't put novocaine in the muscle."

I know.

The ultrasound room is so dark and quiet it has become its own universe, sealed off from regular life. Yet I know that behind the door is a small waiting room where four or five women in bathrobes are waiting. They read old magazines, legs crossed, feet jiggling and twitching. Those gestures mark time. They are waiting while I'm lying still, insanely comfortable on a new gurney (brand new, $4,000 worth of new, the wonderful ultrasound tech informed me) and bundled up in heated blankets. Then I realize a third person is in the room; the pathology assistant for the second, then third biopsy. The tissue will be analyzed immediately. I will know what I need to know what I already know from seeing the enlarged lymph node on the screen. Between biopsies I actually fell asleep. Right now that is my operating definition of mercy, to understand that another diagnosis of cancer is imminent and to be all right with that knowledge.

With cancer it's not one simple moment but a series of steps, one leading to the next. By the time I arrive home, when DH asks how my visit went, I have to tell him, "not well." He is a three-time melanoma survivor. "Not well" tells him something he never wanted to hear.

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Since April 10 I have been largely offline,  either at MD Anderson or trying to get the next appointment in place, and talking with gracious physicians who have been generous with their time, explanations and kindness.  

Plus after 15 years NED I now enter the changed world of cancer diagnostics.  I am no longer a CT or MRI virgin. I drank the fruit-flavored barium smoothie, I've had the contrast IV's.  I ran into the inevitable young phlebotomist who missed a vein the size of a worm; I looked at her pleasantly and said, "go get someone else." 

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer. All of this stems from the first cancer, so neither surgery nor radiation are needed at this point.

Biologically? The cancer's make-up is the same: 100 percent estrogen positive, progesterone negative, HER 2-neu negative. It's time to take away this cancer's food source. I'm about to be so thoroughly estrogen deprived that what I used to complain about menopause will soon become "the good old days." There are many options for shrinking this cancer and I have every hope that this will happen. The fact that it has been 15 years since my original diagnosis helps considerably. 

Last night I started treatment via the local Kroger's, where I picked up a prescription for Femara (letrozole), an AI or aromotase inhibitor. Where tamoxifen blocks the estrogen receptors on cancerous cells themselves Letrozole blocks the enzyme that converts androgens into estrogen in postmenopausal women. In premenopausal women the ovaries are the primary estrogen source.  In two months we'll look at what the Femara has accomplished, then consider the double whammy of Aromosin (exemestane) and Affinitor (everomilus),  another AI combined with an oral chemotherapy agent. With both approaches I'll receive monthly injections of Xgeva (denosumab) to shore up my bone strength.  

This morning DH wonders if I've experienced any side effects.  "No," I told him, "all systems are go."

It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.

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Survivorship Guidelines. For real.

Late last week the National Comprehensive Cancer Network (NCCN), a nonprofit alliance of 21 comprehensive cancer centers, announced its first ever set of clinical practice guidelines for survivorship care.
     There are some 13.7 million cancer survivors in the United States alone. Of those, 2.9 million are breast cancer survivors. All of us have found our way through those first difficult months and years following diagnosis. Treatment itself was one thing. Trying to adjust to life after cancer was another.
      But by any measure the guidelines are good news for any man or woman in treatment now. The 100-page report covers eight distinct areas:

• anxiety and depression
• cognitive function
• exercise 
• fatigue
• immunizations and infections
• pain
• sexual function 
• sleep disorders. 

           Standards for evidence-based survivorship care are only being developed now. The first conference on survivorship science as an entity in and of itself did not take place until 2003. In 2004, the CDC and Livestrong published "A National Cancer Action Plan for Cancer Survivorship," which included the simple, yet powerful recommendation to establish an infrastructure for a comprehensive database on cancer survivorship. I don't know if that has transpired.  While that sounds smart to me, making smart things happen is not one of the hallmarks of our framented health care system.  
           Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report Lost in Transition, which made the case for survivorship care. Six years later Livestrong held a collaborative symposium of stakeholders, health care professionals and advocates to begin a consenus building project to articulate the "essential" elements in surivorship care. 
            A later IOM report, "From Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," recommended that psychosocial screening be part of quality cancer care.  This is well covered in NCCN guidlines but why other concepts from Lost in Transition and Elements didn't become part of NCCN's report aren't clear, even though both reports are mentioned. NCCN surivorship care guidlines, for example, don't even support the need for a survivorhip care plan or treatment summary. While we all understand that there's no economic incentive in place for this let's get serious. A one page print out is not rocket science. Both "Lost" and "Elements" stress the need for education - of providers and patients - and coordination of care. NCCN's guidelines don't venture that far.
            NCCN's guidelines are directed at professionals. How this material will make its way from the nation's 21 comprehensive cancer centers to the community setting, where the majority of women are seen, is not explained. Color me skeptical but I see a packet of information stacked on an oncologist's already stacked desk. Neither were there any outside patient advocates or organizations on the committees as listed in the report. This makes no sense to me. You'd think that patient advocacy networks would be tapped for their assistance and guidance in moving this material to where it needs to be. Let patients know and let them help. No one is more invested in assuring the provision of good survivorship care than we are. 

          A few other take-aways to the report:

• at least 50% of (all) survivors suffer from some late effect of cancer treatment. The most common problems seen are pain, depression and fatigue.
• anxiety and depression affect up to 29 percent of all survivors; and some 19% meet the diagnostic criteria for post-traumatic stress syndrome.
• the increasing trend toward more treatment, combined chemo, radiation, hormone therapy and surgery can result in more late effects. One example was the study from last week on increased of heart disease for women receiving radiation therapy.

          Believe me, I am far from done with this topic. Sometimes It seems the more we do to treat - not cure - cancer - the more potential for problems there are down the road.  We can't go back and undo treatment we selected, decisions we made when faced with a difficult, confounding disease. I do believe we can do a better job with survivorship though, and these guidelines are one place to start.
          I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address here:
       

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Interesting note:  I just saw a news release from NCCN announcing that two additional cancer centers have been added to their network.  They are UC San Diego Moores Cancer Ceneter and University of Colorado Cancer Center.

Is Metastatic Breast Cancer on the Rise in Young Women?

Update: 3/2/2013: Ann Partridge, MD, director of the breast medical oncology at the Dana Farber Cancer Institute, with excellent questions on the study data and findings: see below.

Update:  On Thursday, February 28, #BCSM co-moderator Deanna Attai, MD added more clarity in this appearance on @MyFoxLA

Something long noted in breast cancer circles was study coming out today in the Journal of the American Medical Association that found a very small, but statistically significant, increase in the number of young women between the ages of 25 to 39 who are diagnosed with metastatic breast cancer.  

The change noted comes down to an absolute increase of 1.37 women per 100,000 women over 34 years, or approximately 2 percent per year. The same increase was not noted in older women and was consistent across all ethnic and socioeconomic groups.  One surprise is that there was a more pronounced increased in women with hormone sensitive breast cancer, rather than ER- cancer. 

Why this is happening is yet to be determined and was not the purpose of the study. We are left with more questions than answers.  

Studies are often complicated, and this one, a retrospective, observational analysis of three different sets of incidence and survvial rates from the US Surveillance, Epidemiology and End Results (SEER) program at the National Cancer Institute from l976 through 2009 - even more so. The collection of SEER data began in l973, yet the study years ran from 1976 - 2009.  Even the largest data set used, SEER 18, only comprises 28 percent of the US population.  SEER 9, by comparison, only includes 9.5% of the population, and the third set, SEER 13, 15 percent.  

Study author Rebecca Johnson, MD, Seattle Children's Hospital and University of Washington, wrote in the study that, "Whatever the causes - and likely there are more than 1 - the evidence we observed for the increasing incidence of advanced breast cancer in young women will require corroboration and may be best confirmed by data from other countries.  If verified, the increase is particularly concerning, because young age itself is an independent prognostic factor for breast cancer."

Vast improvements in diagnostic imaging between 1976 and now, staging work-ups and other factors come into play.  "The changes noted may be multifactorial," said Jennifer Litton, MD, of The University of Texas MD Anderson Cancer Center, "with changes in rates of incidence and younger women having more aggressive underlying biologies  coupled with potentially other genetic factors. What is much more clinically important than this would be changes in overall survival."

Breast cancer advocates concur. "These numbers do not change it for anyone who dies of this disease today," said Joy Simha, co-founder of the Young Survival Coalition. "We need to focus on finding the cause of breast cancer so we can make change happen."

Another aspect confirms what was discussed in last night's #BCSM discussion. "What the study enforces to me is the need for all young women to be aware of changes and to be proactive about their health," said Deanna Attai, MD, breast surgeon and #BCSM comoderator.  "Doctors need to be educated that there's no such things as "too young for breast cancer." No such thing."

For women with breast cancer today?  Nothing changes.  If you're in treatment today? Nothing changes.  But if you're watching the larger picture of cancer incidence in the United States in a population that already suffers unduly from a breast cancer diagnosis?  Heads up.  This is a signal we need to heed. 

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3/3/2013:  Comments from Ann Partdridge, MD:  breast medical oncologist from the Dana Farber Cancer Institute in Boston and medical advisor to the Young Survival Coalition: 

It is not clear from the study "whether the overall rate of breast cancer in young women is actually increasing," said Ann Partridge, MD, a medical oncologist from the Dana-Farber Cancer Institute and Harvard Medical School in Boston, Massachusetts. In other words, the study does not indicate whether the increase in advanced disease means that there is an overall increase in disease in young women.

That is important because other studies using SEER data have indicated that the rate of overall disease is stable in young women, said Dr. Partridge.

She pointed out that Dr. Johnson and colleagues found that the rates of localized and regional disease held steady in young women. Therefore, because they found an increase in advanced disease, thereshould be an overall increase in young women, she said.

However, the researchers "did not show/discuss data on overall rates of breast cancer in young women," Dr. Partridge wrote in an email. This omission, combined with the fact that the study findings might be in conflict with findings from other studies using SEER data, "leads me to wonder about the article," she said.

Check out the rest of the article and others: 

From Liz Szabo, USA Today:  "Deadly Breast Cancers are Rising in Young Women"

From the NYTimes:   "Study Finds More Breast Cancer at Young Age"

From NPR:  "Younger Women Have Rising Rate of Advanced Breast Cancer Study Says" 

Cancer and My Marriage

Note: Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. Ditto for managing cancer on the job or with children. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. While we celebrate relationships where love’s better nature rules, it’s also time to honestly share the kind of stress cancer and its associated treatment brings to many two-income families where jobs, children, carpools and chemotherapy all need to be balanced in the course of a day. I was asked by a woman whom I admire to publish this essay here. It is my honor to do so.

 --- Jody Schoger

I never thought I would write an anonymous blog post.

Nonetheless, here I am, writing about cancer’s impact on my marriage after my late-night Google searches only yielded stories of marital triumph, replete with images of the devoted spouse proffering a tender kiss on his partner’s bald head. My hope is that the next despondent, lonely cancer patient might feel a little less crazy reading my story

I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to shield my family’s privacy. We have had the kind of marriage people say they can bet on. Single friends confess that they hope to find a partnership like ours. Obviously, things are always messier on the inside, but we undoubtedly share a strong love for and commitment to one another.

When I was diagnosed we’d been married with children for more than a decade. Like every couple we had our strengths and weaknesses. We were strong in the communication department, which allowed us to navigate the transitions of parenthood, moves and job changes.

Even with these strengths at our disposal, nothing challenged our relationship like my cancer diagnosis. I was in treatment for almost a year, with follow-up drugs and surgeries that impacted my quality of life for a prolonged long period of time, far longer than either one of us expected. I had chemo, a mastectomy and radiation which was then followed by a series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.

Our marital glue was communication, adventure, and sex. Chemobrain wiped out my ability to communicate, especially about emotional issues. Strong emotions made me queasy, leading me to shut down even more. Also, my forgetfulness was a constant source of frustration to my husband, who came to treat me like one of the children, nagging and cajoling me.

The painful truth was that he wasn’t totally off-base in doing this. He had to keep the household together, and I was falling apart. As for adventure, it is hard to be spontaneous when you are immunocompromised, nauseated and unprepared for the undertow of fatigue that can pull you in and wipe you out. And of course, our sex life was horribly disrupted. Given the length of our relationship and the presence of children, we were surprisingly regular in our sexual activity. Chemo brought on chemical menopause; the mastectomy took away a critical erogenous zone and left me with profound loss of body confidence. Radiation, for me, was painful and a complete energy drain. All this together is the opposite of sexy.

I have read accounts of the sympathetic, supportive husbands who wait patiently for a partner to heal. My husband was like this probably two-thirds of the time. But he is only human. All the things I couldn’t do he did ... from driving carpools, cleaning the house, doing laundry, communicating with teachers, mediating sibling spats, and tween-age drama. He was holding down his own job, and could only watch as the little energy I had energy my went to my work. By the time I arrived home I was completely spent and totally unavailable emotionally or sexually.

Plus my bitterness at the length of treatment grew as the months dragged on. If it had been a month or two, I think we could have endured it and come out relatively unscathed. But this has gone on for years. Not only was this ordeal loosening our glue, but the friction points of marriage – the ways we see things so differently –– began to push us further apart. Because of my limited energy and concentration, we couldn’t have one of our major realignment conversations that used to bring us back to a place of mutual understanding and respect about our differences. Add to this mix the financial strain of decreased income and increased expenses. A chunk of my income comes from freelance work, which was now off the table because of my illness. Even though we have good insurance, I was stunned at how quickly medication co-pays and deductibles added up to big numbers. Money is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.

Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation, emotionally, physically and sexually. It was a stretch for me to comfort him, since he was basically right. Guys really don’t reach out to other men when they are vulnerable. Where I am sure my girlfriends would have rallied to my side had our roles been reversed, he was left basically alone. None of our extended family members live near us. There wasn’t a grandparent, an aunt or even a cousin to give him a break for any length of time.  Nor did it help our bond that he was petrified at the idea of actually losing me. At his lowest moments, he would vacillate between his frustration with my helplessness and the terror of my possible death. He told me through tears one day, "I can't stand that the one person I want to talk about all this with is you, and you are really not really able to talk."

Another crisis came after my treatment was over and I started to regain my cognitive and physical energy. It would no longer do for him to treat me like his other child. But it takes more than a simply saying, “Mom’s back in business.” The children had learned that Dad was the Real Parent in the house, an idea reinforced by the ways he would second-guess my authority as a mother. It was difficult to stand up to this. How do you stake a claim to your authority when you are not the same in memory, strength, or energy? I confronted him about this. To his great credit, he has worked with me to rebalance our parenting team, with the understanding that I am still not 100 percent. Regaining authentic balance in our partnership remains an ongoing challenge.

Our sex life is on the mend but is still a source of strife. I have not figured out how to feel comfortable naked, with all the scars riddling my torso and the false breast that feels numb and dead. My energy remains unreliable. At night, once the dishes are washed and the children tucked in, I often want to crawl in the bed to sleep. We are trying to be more deliberate about carving out time for ourselves and our relationship, but it is so hard. So, so hard.

There is a lot of talk in the cancer world about survivorship plans for patients. What I really need is a survivorship plan for my marriage. In my support group, I see a lot of people getting divorced after the crisis of treatment subsides. These wounds cut deep, touching our greatest insecurities. Luckily, I do know a handful of survivors whose marriages did recover. I just wish I had more of a roadmap for how to steer my marriage toward success and away from the potential disaster.

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Kicking off 2013 with Regina Holliday

One of the great assets of dipping into social is the opportunity to watch movements and events - from political uprisings to breaking news like Sandy Hook - take place.  Some flare then fall away. Others begin as a small spark and grow steadily until one tipping point after another is scaled. Then suddenly, everyone wonders what it must have been like before. 
          Regina Holiday is one of those sparks.  I've been following her work and advocacy for more than two years with sheer admiration for her guts, passion, intelligence and relentless determination to set things right.  Hers is so much more than, "I never want what happened to me to happen to anyone else," even though this is certainly part of her mission.
          That mission involves medical data, patient empowerment and making possible the movement toward centered patient care.
          Every hospital in the country is going to tell you they practise patient-centered care.  But patient centered care in its loosest definition, includes (not excludes) the patient's significant other,  an explanation of the patient's diagnosis and outlined treatment plan, a copy of that plan, an explanation of tests and procedures,  repeated as many times as the patient and significant other needs to grant approval. As I said, this is a loose definition.
          Regina Holliday and her husband, Fred, received none of this in a large hospital in the greater DC area in 2009.  From the bare outline of her story you'd think it was something from the dark ages.  It wasn't.  Her husband died on June 17, 2009, just two short months after being diagnosed with a Stage IV renal carcinoma.  This diagnosis had been missed -- the symptoms not even investigated - on four separate occasions.  In a major metropolitan area.  He was given antibiotics, then pain killers and told to go home.
         But  Regina and Fred's story doesn't end in tragedy.  It only begins there.

Little Miss A-Type: Regina Holliday's jacket. 

         Regina transformed her grief into action.  An artist by inclination and training, she documented their story in murals, paintings.  She spoke publicly, at prestigious patient conferences and symposiums. She became the visual reality of the epatient- "give me my data" movement that is part of the Society for Participatory Medicine.

         For all these reasons and so many more - we had Regina as our first guest for 2013 on #BCSM last night.  It was 60 bristling minutes of discussion about change, educating others, and taking charge of our own health.
        I've put together a Storify of the chat here and the full Symplur transcript here:
        When Regina asked the (alleged, my very obvious editorial judgement) oncologist for details about her husband's diagnosis, her referred to her as Little Miss A-Type Personality. 

         Little did he know he was messing with the wrong woman.

Advocacy at #SABCS

Dec 6, 2010 San Antonio: 7:15 am

My mind is stuffed with data - slides, posters and much more after attending the 35th annual San Antonio Breast Cancer Symposium last week, an international gathering covering everthing about the science of breast cancer. 

Conferences like this are a conundrum: there are more sessions to attend and people to see than one person can possibly manage ... yet we know how vitally important the information is for women with triple negative, inflammatory and/or metastatic breast cancer. We all know women whose lives depend on what is happening in the translational research context and Phase III trials. We all want to have the chance to stand up to applaud, cheer and yell. This year there was polite applause. While I keep hearing the phrase - from lab to the clinic - there wasn't a lot for the woman having an appointment tomorrow. That is the truth from what I've studied so far. Knowing what is possible helps us understand how to pinpoint our advocacy.

Here are a few highlights: 

Susan Rafte, Houston

• 34 Years: that's how much time was needed for the first-ever "civilian" moderated session.  Susan Rafte, founder of the Pink Ribbons Project in Houston, moderated a three-part panel on breast cancer survivorship that included presentations on sexuality during and after treatment, the risk of secondary cancers and cognitive dysfunction. Patricia A. Ganz, MD, speaking on the cognitive issue, was a far better bet than the small but attention-grabbing study on chemobrain presented later in the week. Establishing a survivor-led session was a huge advance in advocacy that we want to see continued not just at SABCS, but at ASCO and ASCO Breast. Let patients help, is what @epatientdave in the Society for Participatory Medicine says.  Ditto that!

• Atlas Shrugged: The Adjuvant Tamoxifen: Longer Against Shorter or (ATLAS) study showed that use of tamoxifen for 10 years instead of five provided a 2.8 percent decrease in overall mortality, especially in the second decade following diagnosis. You could hear the collective groans from survivors who have taken the drug. You could hear the collective groans from medical office staff in charge of answering the phones. You could hear the questions about tamoxifen/vs aromatase inhibitors and who to start when and on what from oncologists. In the long run this trial will not change your life; it will add to the wealth of information oncologists have in developing treatment plans for women diagnosed today. With one huge exception: if indeed pre-menopausal women are going to be prescribed 10 years of tamoxifen then an effective survivorship plan that includes side-effect management must come with the prescription. No kidding. What use is the information if adherence in the population under 45 barely approaches 50 percent? This issue itself is bigger than the trial findings. Adherhence is a worrisome trend considering the natural history of ER+ breast cancers and its tendency for "late" recurrence (be sure you know when late recurrence means five or when it means after 10 years - it varies). At some point in THIS life I hope to hear one physican stand up and state the simple truth, "There's no doubt. This is a tough drug to take and we've known this for a long time." 

• Science is Incremental. Breakthroughs are rare. Advances don't arise from a vaccuum. Most  point to the 2005 ASCO presention of Herceptin in HER2+ cancer as the benchmark. "Cancer researchers often toil in a grey mist, a world of indistinct outlines, an oft-depressing, or at least frustrating place," George Sledge, MD, past president of ASCO, wrote in OncologyTimes. Wow. It helps when we understand the researcher's daily challenge; the clinician's hopes.  A basic understanding of how medical progress happens is essential for making sense of SABCS. Without it the symposium would be a very disappointing place. Distinguishing hope and hype, promise or promotion is key.

• Anecdote vs Evidence.  My experience is essential as an advocate and writer. It empowers me as "ears" within the breast cancer community. But my experience is not evidence. It's my story. 

Science in action. Biomarkes w/in HER2+ drawing.

• Moving Forward in HER2+ Cancers.  There was good news here: one year of traztuzumab is still the gold standard. And to see where things are going? Take a peek at my horrible photo above: it gives you some idea of the depth of detail necessary to develop effective treatments. We are talking about layers within an individual cell itself that are at times impossible to fathom. All within one cell.  Plus another discussion on "functional genomics" left me with the impression that it may not be an individual biomarker itself that makes the difference in developing effective treatments but the architecture in which those biomarkers exist, or better yet, the roadmap or pathways the biomarkers populate.

• Avastin:  So long, farewell...or at least, until the drug can be matched with the right biomarker.

• Advocacy: The breaking story as far as I'm concerned?  The photo here, advocates and fellow recipients of scholarships from the Alamo Breast Cancer Foundation.  Betty Summer (L) and Vicky Carr, are part of a group that formed within the conference itself.  This is why advocates attend conferences like SABCS.  These women identified a need in the triple negative breast cancer population and moved forward immediately. Not tomorrow or next week. They went to work that day. They met, planned, thought, and considered the evidence. They found physicians involved in triple negative research and asked tough questions: where is the promise? Where is the hope? Before the weekend was over they were formulating a plan, "drilling deep," as we heard all week, outlining strategic initiatives to address an aggressive and confounding form of breast cancer.  If there's success, and I'd say there was, it will be in watching their story unfold. They are part of the solution. So are you.

There's much more to come.  Thanks for reading,

From Cure Magazine on advocacy:

 http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2012/12/3/Breast-cancer-advocates-a-visible-presence-in-San-Antonio

With thanks to the Alamo Breast Cancer Foundation for the scholarship that made it possible for me to attend the 2012 San Antonio Breast Cancer Symposium.

Your Mind on Chemo

Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater.
             Yesterday it was impossible to miss the collective shouting when the Radiological Society of North America (RSNA) announced the results of a small study demonstrating the physiological process behind the symptoms that plague so many of us.
             Now there is a scientific explanation behind that freaky and disabling symptoms that make up the word "chemobrain." While sometimes used derisively, sometimes jokingly, sometimes teasingly, there is now no getting around the fact that administering chemotherapy causes significant and demonstrable changes in brain metabolism.
            Makes sense, you think.
            And it does.  But common sense isn't science; and even those medical professionals who listened sympathetically to their patients had little to offer in return.  Part of the answer came in the way the scientists approached the problem.
            Instead of studying chemotherapy's effect on the brain's appearance, Rachael A Lagos, D.O., and colleagues at the West Virginia Univeristy School of Medicine instead looked at its effect on brain function through an analysis of PET/CT brain imaging results utilizing special software.

             What a difference that made.  The proof was in the scans where "statistically significant decreases in regional brain metabolism" were noted.  Those changes were seen in areas associated with contentration and memory.
             Long story short:  your brain has as much difficulty processing chemotherapy drugs as the rest of your body does.

By now you all know that Robert Bazell, heath/science correspondent and author of The Making of Herceptin covered the story for NBC Nightly News and a crew came to talk with me yesterday morning about my chemobrain experience.
             My experience may have been different from yours.  Mine may have lasted longer. You may have had sypmtoms that disappeared overnight.  I don't know how much of the cognitive problems I encountered can be attributed to chemo or simply the totality of treatment --  radiation, multiple surgeries, and tamoxifen, the ultimate in brain scrambling medications.  But I don't need a study or PET/scan of my brain to say that definitively about Tamoxifen.  After seeing this short and doable demonstration from a radiation resident (the RSNA study was a poster session, mind you) from just ONE aspect of cancer treatment is more than enough for me.

Exercise works for easing chemobrain. Truly does.

Now where we need to go is to continue the discussion on working through the disability. That's why the crew filmed the additional segments that they did.  Those weren't random.  Both cycling and quilting were activities I took up AFTER treatment to help cope. There is no doubt that physical exercise, intense aerobic activity, is one of the best possible things you can do to cope with chemobrain, fatigue, and regain strength and vitality.  Taking up quilting involved learning a compelte new set of tasks, and yes, not seriously injuring myself or anyone else when using a rotary cutter.  A third way to help anyone suffering cognitive impairment would be assistance with organizational skills.  Anyone who knows me and looks at my waning organizational skills can attest to that. A good text on ADD probably woundn't hurt either.  Stress management is also key.

Quilting is something I took up after cancer treatment....it's soemthing creative and stress managment all in one. Here I'm using English paper piecing of 3/4" hexagons. There's no way to machine piece them accurately.

With Debbie Strauss of NBC News.

          When I watched both the broadcast and web footage last night  I was reminded that for many of us, the cancer itself wasn't a problem but recovering from treatment WAS.  While we were talking I told correspondent Debbie Strauss that during those difficult months I remember staring at a blank piece of paper trying to write a simple paragraph.
           A paragraph.  Something I used to do in my sleep.  Something I could do upside down or inside out.  No, writing a paragraph has never been the same.  But never has the sense of accomplishment carried such a sweet ring, either. And that will always be enough.

 
More where this came from:
Reserarchers Find Evidence of Chemobrain
Healing from ChemoBrain Gradual

BoingBoing: Chemobrain....Isn't All in Your Head

Great blog on chemobrain  AnneMarie Ciccarella and this recommendation: Your Brain After Chemo, by journalist Idelle Davidson.

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