Tag Archives: breast cancer

Research Advocacy: Try This at Home!

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Here is an article I wrote for the Komen Advocates in Science bi-monthly newsletter. I hope you enjoy it.

Cómo crear una rutina si trabajas desde tu casa? | Moi
As someone living with metastatic breast cancer, I’ve been sheltering in place and avoiding physical contact with the outside world.
 
Since the COVID-19’s arrival, nearly all of the scientific meetings I’ve been scheduled to go to the first half of the year have either been canceled, postponed or changed to a web-based format. These meetings provided me with opportunities to connect with researchers and clinicians on research progress and priorities.  Also, to reconnect and meet my fellow research advocates, which is always a great source of inspiration and strategies to improve my advocacy efforts.
 
Right now, I’m concerned about a number of things related access to care.  We know access to care greatly impacts our quality and quantity of life.

Some important clinical trials are on hold and not enrolling new patients.Research dollars at the National Cancer Institute may be in jeopardy, as the government decides where to draw funds from to fight the pandemic.  Studies may be delayed or canceled.

There are researchers who have had to postpone their research due to campus closures.  Basic researchers and their research are being hit particularly hard by these closures.

Some patients are reluctant to go to clinics for tests, scans and/or regular visits.

Some cancer patients are unable to access pain medication because getting a refill requires a face-to-face visit.
Cancer patients undergoing procedures or needing to be in the hospital are unable to have someone with them. 

Hospitals and clinics are closing access to all except the patient making it difficult for cancer patients to receive the emotional support they need from friends and families during clinic visits and hospital stays.

Cancer patients, who have been laid off, have thought about rationing or stopping their medications or treatment because they can’t afford it.

A number of these things are not traditional “research advocacy” issues. But they play a vital part in our efforts to end this disease and its impact on patients.

What can we, as advocates, do?  After all, we’re also practicing physical distancing and not leaving our homes. For starters, we can:

Engage in social media, like Twitter, to learn what’s happening with other cancer patients, survivors and co-survivors. How are they coping…or not? How might these experiences and insights impact research?  What actions can we take to reduce this pandemic’s negative impact on our breast cancer community?

Call or email researchers we are working with or have worked with.  What is their situation?  How can we help?

Contact our legislators when critical legislation or policies are being considered.  Komen makes this easy to do.  If you’d like to be involved, sign up to receive emails on the latest policy issues and how you can help.

Contact people we know who live alone.  Even a five-minute check-in call can make a difference in their well-being!

Ask if canceled or postponed research-related meetings might be conducted online or as a series of webinars.  Maybe we can keep research efforts moving ahead as we move online with our advocacy.

Things we can do to keep our minds engaged in research:

Write a blog post about your experience as a research advocate.  Komen has a blog page where you can contribute your thoughts.

Watch recordings of scientific webinars and meetings you’ve been meaning to review.  Stay on top of what’s happening in the science of cancer.

– The Research Advocacy Network is known for its advocate-friendly educational resources.   

– For breaking news or discussions on recent issues, Check here.  

– SHARE also has a good video library.

– Check out Komen’s You Tube page for videos of interest to you.

Get involved in one of the Advocates in Science Committees.  The new fiscal year starts April 1.  We’ll be launching our new AIS goals and objectives. We need your brain, voice, and passionate heart!  Contact Liz Graves to let us know if you’re interested,  lgraves@komen.org

Whatever you choose to do, make sure you are practicing good self-care and compassion. This is a difficult time. Your health and well-being are priority #1!

 Author’s note:  Many thanks to Cheryl Jernigan for her thoughtful contributions to this article.

When is Enough Really Enough?

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On a recent committee call, one person jokingly asked “Does everyone have enough toilet paper?”

Instead of adding my usual sarcastic comment, I paused.

Then I said “I don’t know what ‘enough’ is any more.”

Enough:  \ i-ˈnəf

occurring in such quantity, quality, or scope as to fully meet demands, needs, or expectations.

Why don’t I know what “enough” is anymore?  What’s changed?

I used to know how much toilet paper was enough – when I had a full roll on hand to replace an empty one.  How many full rolls were enough then?  It was the number of rolls we went through in a week’s time. 

When my husband wrote the grocery list, he’d look in the cabinet, see how much we had on hand, then determined whether he needed to buy another package.  One package.  Not a cart full.

What’s changed is that we don’t know whether there will be any toilet paper on grocery shelves next time we shop.  Before, there was always a complete aisle full of toilet paper.  No shortage.  Kids used to prank their friends with a yard full of TP draped from tree to tree. Unthinkable today.

Maybe panic created the shortage.  We’ve all seen videos or photos of shoppers emptying shelves or fighting over the last pack.

It appears we, as a society, can’t trust the supply lines like we used to.  Maybe some thought that all of the toilet paper manufactures would shut down production due to the outbreak and then where would we be?  Back to using Sears catalog pages in the bathroom?  Oh, I guess not.  No more Sears catalogs.

Maybe it’s time to really think about our behaviors and if our shopping urges make sense.  Should someone have a garage full of toilet paper causing others to go without?  Should e-bay allow sellers to offer otherwise inexpensive items at huge mark-ups with high shipping costs?

Our version of a free-market economy with supply and demand features makes all of this possible.  If you want it badly enough and the supply is limited, you must pay the price.

I just hope that those e-bay sellers get stuck with a huge inventory they can’t get rid of.

As families like mine are trying to make sense of this new, temporary reality and re-define how they live, I wish there was at least a little more information about the supply chain – what’s working and what’s not.  I’m not sure I can watch another COVID-19 explanation of how the virus is spread.  I’d rather hear more about how to live our lives now.

As a person living with metastatic breast cancer for over 20 years, I’ve had to redefine how to live my life with each of the 17 treatment lines I’ve been on and with each treatment’s associated side effects. 

You’d think I’d be used to redefining how I live my life.

The problem now is it’s even more difficult to plan for events that are important to me.  I don’t know when this temporary way of living will end.  I don’t have things to look forward to.  Nearly everything I was hoping to do to through the end of summer has been canceled or delayed indefinitely.

Having something to look forward to has given me motivation to get through whatever problems cancer treatment has caused.

I’m not coping very well.  I’ve had enough.

Redefining Hope in Metastatic Breast Cancer

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I had a second post included in the Komen Konnection Blog, this one about hope.

Here is the content of that post.

Image result for hope image

“Hope” is the desire to have something happen or to make something become true.

We hope to be in a meaningful relationship, sharing our lives with someone special.

We hope our children lead happy, healthy and productive lives.

We hope to get to a service station before the gas tank is dry.

Hope for Early Stage Breast Cancer Survivors

In early stage breast cancer, hope is about getting through treatment and eliminating breast cancer in the body.  It’s about wanting to get through therapy without too many life disruptions, eventually putting cancer in the rear view mirror. It’s about wanting to live a cancer-free life.

There are many inspirational memes for early stage breast cancer patients, messages intended to lift spirits and ease anxiety of being a breast cancer patient. For example, “Once you choose hope, anything’s possible.” – Christopher Reeve

For those living with Metastatic Breast Cancer (MBC), the hope-centered memes turn into educational messages like this: “Metastatic Breast Cancer Can Be Treated But Not Cured.”  

Is this a hopeful message?

I’ve been living with MBC since 1998. I think the message is extremely hopeful. When originally diagnosed, there were only seven therapies for MBC. Now there are over 60 with more in clinical trials.

How I’ve Redefined Hope

Hope, for me, isn’t about being cured and putting cancer behind me. 

Hope is that I will live as long as I can while experiencing a reasonable quality of life. 

I also hope that when I die of MBC, it won’t be a long, painful process, one that emotionally rips my family apart. I don’t want to be grasping for treatments when it’s clearly the end, treatments that ruin the quality of whatever time I have left. I don’t want my family to feel guilty that they could have done more.

What is realistic to hope for living with MBC? Should hope even be realistic? Or is what we hope for meant to inspire us?

Dr. Leslie Blackwell explains in her TEDxCharlottsville talk about how hanging on to hope can actually shorten and reduce the quality of life for terminal cancer patients whose bodies can’t tolerate more therapy or who have no viable therapy options. Her talk is called “Living,Dying and the Problem with Hope.” She brings up excellent points about our inability as a culture to see death as the natural conclusion of living.

What Others Living with MBC Say about Hope

I asked MBC group members on FaceBook how the concept of hope has changed for them once diagnosed with stage IV breast cancer. Here is a summary of their words:

Thoughts on Longevity:

“I cling to hope even more now. I want to live as long as possible.”

“I hope to live longer even if my quality of life is low. I want be with my kids as they grow up.”

“My hope at one time was to make it to Christmas. I’m doing much better and believe I will live to see next year.”

“I include hope as an essential part of my cancer treatment.”

Thoughts about Family:

“Hope today centers around my children. I want to do all I can now to set them up for bright futures.”

“I hope my small children remember me after I die.”

“I hope my death won’t traumatize my family.”

Thoughts on Faith: 

“I’ve turned to God as I have no hope in man or science.”

“Hope is like a thread, not a rope. However, my faith, rather than hope, comes from inside and gives me strength.”

Difficulty with Hope:

“I struggle with hope and give a fake smile when people advise me to ‘have hope.’”

“I try to balance hope with the reality of my situation. I used to hope I would be cured.”

Research:

“I hope research accelerates to the point that there will be treatment options for me that provide durable responses:  years versus months or weeks.”

“To me, hope is research to benefit the next generation.”

Other Types of Hope:

“What I hope for changes by the day, week and month. These are short term hopes like getting a good scan report or that I’ll feel better tomorrow.”

“Hope for me is the ability to wake up every day.”

“I hope to enjoy every moment I’m alive.”

“I hope I have the courage to embrace death with acceptance when my times come.”

“Hope gives me the spark to set new goals, learn new things and appreciate life.”

“Hope is the lock that keeps fear in a box. It allows me to enjoy the time I have without living in a state of constant anxiety.”

Like most things in life, hope is complicated. We view hope differently once diagnosed with metastatic breast cancer. Please avoid sharing your version of hope with those living with MBC. If you do, don’t expect to get a big “thank you.”

Hope is personal.

The Right Dose

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I wrote a blog post for Komen about the need for providing the right dose to further individualize treatment in metastatic breast cancer.

Here’s the content of the blog:

Personalized medicine has been hailed as one of the latest big ideas when treating patients. According to the National Cancer Institute Glossary it’s defined as a “form of medicine that uses information about a person’s own genes or proteins to prevent, diagnose or treat disease.”

What’s missing from the personalized medicine definition and practice?

Personalized dosing.

The goal of treating early stage breast cancer is to obliterate cancer in the body and keep it from coming back. In metastatic breast cancer (MBC), the goal is to be on a therapy as long as possible to control the disease while maintaining quality of life. With two distinct goals, you’d think there would be two dosing strategies. One is a sprint, and one is a marathon.

Most FDA approvals for cancer drugs include a maximum tolerated dose (MTD) with at least two lower doses that can be used. All three are shown to be effective, otherwise they wouldn’t have been approved.

The National Comprehensive Cancer Network (NCCN) guidelines list the MTD for most of the approved breast cancer therapies for both early stage and metastatic breast cancer. These guidelines are used by many oncologists to determine dosage.

So instead of personalizing the dose to patients based on drug sensitivities in the past, whether the therapy is for disease control or disease elimination, a standard MTD is administered.

In July 2019, I attended an update on breast cancer therapies for oncologists where I was the only advocate present. During an optional lunch session sponsored by a drug company touting their new drug that I’ll call Drug X,  I publicly suggested that we aren’t properly dosing new cancer meds when there is no difference in outcomes between maximum tolerated doses and stepdown recommended dose reductions in MBC. Pharma reps swooped in on me after the session.

The reps explained that all patients need to start at MTD because if we don’t start there, we will never know if the patient can tolerate the maximum dose. 

Alarms went off in my head. It made no sense to me.

So, let’s say you are a patient with MBC and you’ve been on a few lines of therapy. You have progression and Drug X is your next option. Even if you have low blood counts, have experienced eventual stepdown doses on your other therapies due to sensitivities or side effects, you are to start at the MTD. Why? Because that’s what the guidelines say.

Does this sound right to you? 

It doesn’t make sense to me. Why subject a patient to the highest dose when it’s extremely unlikely they will be able to tolerate it and will likely experience serious or reduced quality of life side effects? And, these side effects may reduce the amount of time the MBC patient can safely remain on the drug.

Furthermore, clinical trials are often quick to establish dose standards without taking time to consider a variety of dosing schedules and amounts. Sometimes it takes a few years for oncologists to see their patients experience intolerable side effects at the MTD before they change their personal practice using reduced dosing. That happened with capecitabine. 

It seems to me that NCCN guidelines should suggest starting at the lowest dose and ramping up if needed or starting at the middle dose and going up or down based on patient reaction. Some oncologists are already doing this, but outside of guidelines. After all, they are “guidelines” not commandments. Yet oncologists may feel uneasy prescribing outside of these guidelines.  

If you are starting a new line of therapy or are on a therapy but experience intolerable side effects, talk to your oncologist about reduced dosing. Your oncologist should be able to explain a good rationale whether to stay at current dose or step down to a lower dose. Make sure you understand the pros and cons. Then it’s your decision how you’d like to proceed. 

Adding individualized dosing to the definition of personalized medicine should be the standard of care.

*The opinions expressed are those of the author.

For more information see:

“A new concept may help us at last abandon one-size-fits-all dosing of cancer treatment drugs”

“Challenging Standard-of-Care Paradigms in the Precision Oncology Era”

“Precision Medicine Is Not Just Genomics:  The Right Dose for Every Patient”

“I have a pill for that”

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When doctors delay or misdiagnose patients

In June 1998, three years after my stage 2a breast cancer diagnosis and treatment, I was sitting in my wheeled office chair.  I pushed off with my left foot to access a file cabinet.  “OUCH!  That hurt!”  My hip screamed.  I got up and walked around, trying to shake it off.

But I couldn’t shake it off.  The pain worsened.  Over a few weeks, it got to the point where I could barely walk.

In the meantime, I had a follow up oncology appointment with a “fill in” oncologist as my other oncologist moved away and her replacement was yet to arrive. 

Dr. R looked at my lab results, saying nothing about his impressions of those results, and gave me the side-eye.  I told him about the pain in my hip and at the time I thought it might be getting better.  Side-eye #2.  No communication.

I thought “This doctor has the bedside manner of a walnut.”

I was offered prescription strength acetaminophen and told to see him again in 6-8 weeks.  No explanation as to why this early return appointment.

Nothing.

I hobbled back to my next appointment with Dr. R.  He said he wanted me to do x-rays, bone and CT scans.  He didn’t really explain why.

It took a few months to get all the scans taken, compared and analyzed.  This was 1998.  The Dark Ages of diagnostics – there were not many pieces of imaging equipment, imaging sessions took longer and that caused major scheduling delays. 

A few weeks after the results were in, I met with Dr. R again.  He finally told me that scans found “suspicious lesions in my left ischium” and that I needed a bone biopsy to confirm.  But they didn’t know how to approach the biopsy so he would need to consult with various people.

He never said “cancer.”  But I knew that is exactly what it was.

It took 6 weeks to receive a call to schedule the outpatient bone biopsy.  I tearfully called the scheduling department every few days asking for an update.

My hip injury happened late June and it was now Thanksgiving.  I’d invited my entire extended family over for a Thanksgiving Feast.

It took over five months to finally receive my diagnosis of metastatic breast cancer to the bone.  Therapy started the week of Christmas.

When I think back on this, I wonder if Dr. R was concerned that he might frighten me if he shared his suspicions.  What he didn’t know was that I was already frightened, frightened to the point of not saying or asking anything.  That is totally unlike me.  But he didn’t know that.

I’ve shared my stories with others living with Metastatic Breast Cancer.  They are not shocked.  They nod their heads and say “OK.  This is what happened to me before I was finally diagnosed.”

Then my jaw drops.  Every time.

When presenting with symptoms of breast cancer or metastatic breast cancer–even for those who had early stage disease–these are things patients have told me:

Doctor comments heard before being diagnosed with early stage breast cancer:

  • “You’re too young to have breast cancer.”
  • “That’s just an infection.  Happens all the time during lactation.”
  • “You have no family history of breast cancer and don’t have any risk factors.  You’re fine.”
  • “Breast cancer doesn’t hurt.”
  • “You have no lump on the mammogram.  Therefore, you have no breast cancer.”
  • “You just have lumpy breasts.”

Doctor comments heard before being diagnosed with metastatic breast cancer:

  • “Everyone starts feeling like that at age (fill in the blank).  We’re all getting older.”
  • “You probably have colon issues.  Try this laxative.”
  • “Your back hurts because you garden so much.”
  • “Maybe your abdominal pain is due to your diet.”
  • “It’s not that unusual to feel dizzy from time to time.”

The bottom line?  Patients hearing comments like this are often told to wait six months because the symptoms will probably go away.  “This pill can help you manage those symptoms.”

But the symptoms don’t always go away.  Now the patient starts questioning their doctor and trust in their doctor wanes.  Many patients start “doctor shopping.”  They want to find someone who can help them, not dismiss them.

My friend Lynda sums it up like this:  “We are missed, then dismissed.  But we must persist.”

Missed or delayed diagnosis isn’t common to breast cancer alone.  Some illness are difficult to diagnose.  Doctor’s aren’t perfect.  They practice medicine.  That doesn’t mean they’re always good at it.  My husband reminds me that “50% of all doctors practicing today were in the bottom half of their graduating classes.”

But doctors can learn and the best ones learn something new every day. Often, they learn from their patients.

Doctors can’t learn if they never see the patient again after misdiagnosing them.  Or if they never look to see what eventually happened to that patient.  They don’t have time for that.

So how can patients help?  Send an email to the original doctor telling them what happened?  Keep seeing the same doctor over and over until they are properly diagnosed or referred to the right specialist?  Patients don’t have time for that.

I wish doctors would diagnose themselves. 

Are they a problem solver or do they go by a cookbook? 

If they haven’t seen a certain condition before, why might they assume that condition doesn’t exist and couldn’t exist in this particular patient? 

“Never seen it before so it doesn’t exist.”

We don’t know if delayed diagnosis has any impact on MBC overall survival.  But we do know that it has a tremendous impact on mental well-being, the ability to focus at work, our relationships with our friends, families and co-workers among other things.  Once we know what’s happening, we can start finding solutions and acting. 

I’m hoping new technologies like liquid biopsy may lead us to better and faster diagnostics.

But in the meantime “Here, take this pill.” 

Am I Really a Cancer Survivor?

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Call it Like it is: Maintaining the Will to Live

Musings from 21 Years of  Living with Metastatic Breast Cancer

After this blog post, I’m done answering this question: 

Are you a breast cancer survivor?  

Done.  Over.  Fini-to.

People living with metastatic cancer of any type can refer to themselves as anything they want.  Warrior?  Great.  Survivor?  Fabulous.  Thriver?  Whatever floats your boat. 

Yes, sarcasm flows in my veins but, really, I’m good with all of those descriptive terms.  Go for it — for your own purposes but not mine.

These labels help inspire people who face life-threatening diseases feel empowered, strong, hopeful.  Terrific.  I’m happy they use these terms to overcome the dark thoughts in their minds that their illnesses will likely eventually kill them. 

But not today.  Today we live.  Be positive. Be strong. “So stop being so morbid, Sandi, and just live.  Be happy.  Be grateful.”

Using labels like Survivor can matter when you discover your treatment has stopped working or the side effects of therapy are nearly impossible to endure.  “I need to get over this and go on.”

Maintaining the will to live – that’s what it’s really all about – is important for ourselves and for the sanity of our family and friends.  They don’t want us to give up and we don’t want to give up because of them.  Never.  Until we have to…and even then…we don’t want to stop trying to outlast cancer. 

I lost my will to live one day.

In early 2017, after two years of brutal chemo bouts with Ixempra followed by Halaven, I found myself spending more and more time in my recliner.  If I had to go to the bathroom, I’d wait until the last possible moment to muster up enough energy to walk 14 steps.

In between my frequent naps, I looked out the window.  I saw neighbors riding in cars, walking their dogs and gardening.   “I don’t have the energy to do ANY of that and my energy level is draining by the day.  I don’t see an end to this.”

Then we received a much-anticipated call from my son.  “The baby is here!  He was born a little while ago.”  My grandson.

And I wasn’t there.  I couldn’t be there.  Impossible.

My reaction?  I sobbed.  Ugly crying.  Unstoppable tears.

Why?

This couple went through fertility testing only to find they would not likely conceive without IVF.  During IVF, there were many ups and downs for my daughter-in-law.  So many uncertainties.  It was uncertain whether IVF would work, if the baby would survive through pregnancy, if the baby would be born with physical problems and even if the child would survive the birthing process. 

Lots of tension.  Lots of stress.

I was so relieved that my daughter in law was fine and the baby was fine.  What a blessing!

Then my thoughts went here:  “This baby will never get to know me.”

My daughter and husband were stunned by my tears, unaware of the thoughts in my head.  My daughter looked at me and said “Mom, you’re scaring me.”

I thought about what she said and what it meant.  She was afraid I was giving up.  That I would soon die because I might say “No more.”

I scared myself.  What happened to that urging inside of me that made it possible to wake up every day?  What happened to my determination to slog through my 14th line of treatment until it stopped working?

Where did my will to live go?

Packed up and gone.  I couldn’t locate it anywhere.  AWOL.

I thought how calm, peaceful and wonderful it would be to fall asleep and not wake up again.

Then I thought, “Am I really finished here?  Is this my last curtain call?”

It was at that point I called my insurance plan’s mental health helpline.

It took a few weeks to start sensing my urge to live again.  But it happened.  With therapy and medication.  Now I feel more like me.

But I don’t feel like a survivor.

My daughter in law is a survivor of IVF.  My grandson survived gestation and birth.  Both are survivors of their situations.

To me, a survivor is someone who has been able to successfully walk away from a life-threatening event and goes on with life.  Like the survivors of the Titanic.  They got in lifeboats and were eventually rescued.  Most went home.  Many returned to their old lives.  They didn’t get back on that ship except in their nightmares. 

I’m still on the Titanic.  I haven’t survived the event called “breast cancer.”  I may be currently living with breast cancer but I’m not someone who has survived.  I know my time is limited, even though I’ve beaten the odds of living past the magic five-year mark.

So, call me what you will if it makes you feel better to say it.

Tell me I’m alive because I have a positive attitude.

Tell me I’m alive because God isn’t through with me yet.

Tell me I must be doing something different to have lived this long with stage IV cancer.

But I know I’m alive because I still have the will to live.

Oh, and having a type of cancer that responds to current therapies helps a lot.  A whole lot.

At First

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notebook writing pencil start
Photo by Dom J on Pexels.com

SHARE published a poem I wrote during the San Antonio Breast Cancer Symposium (SABCS) this month.  I attended an evening workshop along with a handful of other Patient Advocates attending SABCS where we learned about how to write interesting pieces for publication. Eli Lilly and Company sponsored this event.

After a seven-minute writing exercise, we were asked to read what we wrote about living with metastatic breast cancer (MBC).  This is what I wrote:

At First

Cry. Stomp your feet. Curse God. Feel sorry for yourself.

Mourn the future life you won’t have.

Go to sleep. Wake up. Greet the day.

Think about what will make you happy for the next 5 minutes. Do that.

Think about who you love and why you love them.

Prepare yourself to give the news, but only to those who won’t stomp on your soul.

Think about how you want to live your new life story. What do you want? What don’t you want? How much do you want to know what’s lays behind the medical curtain?

Plan your questions for your doctor. Don’t sit there and be dumb. Ask. Ask. Ask, until you understand, even if your doctor rolls her eyes.

Come up with a plan. Sleep on it.

The next day, pretend you made a different decision. Live with that.

Then on the third day, decide what you want to do and go for it.

And remember, by all means, do no max out your credit cards. You may live long enough to have to pay it all back.

These thoughts are based on general advice I’ve given over the phone to many frightened women who were recently diagnosed with MBC.  These callers connected with me through the helplines of After Breast Cancer Diagnosis, Living Beyond Breast Cancer, or SHARE.

Sex and the Cancer Patient

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intimacy-touch_1

This quality of life issue is not adequately addressed for cancer patients

Hundreds of billions of dollars have been spent researching how cancer develops, grows and spreads in the body. A fraction of that money has been spent on quality of life issues.

This is how much has been comparatively spent on figuring out how to overcome loss of sexual drive as a result of cancer treatment:

Cue Sound: Crickets Chirping

About ten years ago, I attended the San Antonio Breast Cancer Symposium as a patient advocate. At the end of each day, advocates would gather with a panel of selected scientists and clinicians to discuss the highlights of the daily program and answer questions the advocates might have.

On the panel at one of the sessions was Dr. Susan Love, author of The Breast Book, esteemed UCLA breast surgeon and founder of Dr. Susan Love Research Foundation among other things. She is an amazing woman who can take complex issues and provide analogies and stories to make these issues understandable. From all of my encounters with her, I’ve found her to always be open minded and more than willing to answer tough questions.

One of the big questions on my mind that day was loss of libido that many cancer patients face after surgery, during treatment and even after treatment. This is particularly true of stage 4 cancer patients who are always on some sort of treatment. So I asked Dr. Love if she’s heard about that and what a patient might do to increase her drive.

You could see presenters and advocates squirm in their seats as I asked the question and Dr. Love even blushed a bit. She said she had known about the issue and suggested that patients do things to make them feel “in the mood,” like wearing sexy lingerie or listening to soothing music. You could hear the soft groans from the audience. This time, Dr. Love dropped the ball, so to speak.

A year or so ago, Dr. Love was diagnosed with AML, acute myelogenous leukemia and underwent bone marrow transplant. After her treatment, she gave a short talk to cancer researchers where she stated, “The only difference between a researcher and a patient is a diagnosis. We’re all patients.”

Well said.

This week, SHARE hosted a webinar featuring Dr. Love entitled “When the Doctor Becomes a Patient.” There was time at the end for Q&A. Guess what question I typed into the Q&A box?

“A few years back in San Antonio, I asked you what a patient could do to overcome loss of libido due to treatment. You answered ‘do something that gets you in the mood.’ Now that you’ve undergone cancer treatment yourself, would you reconsider your response?”

You could hear a little gasp on the line.

Dr. Love responded by saying that the libido issue is real and that it’s extremely complex; there are no real answers to how to overcome it. She publicly regretted her earlier response to my question.

I performed a silent victory fist pump.

Loss of sexual drive is a real issue for cancer patients. Consider these situations:

  • Some men undergoing life-saving prostate cancer surgery are left impotent forever
  • Mastectomies and reconstruction might leave breasts looking good most of the time, but the owner of the breasts have no sensation as the nerves are severed during surgery. Some are in constant pain from multiple surgeries.
  • Young women with hormone sensitive cancers often face permanent premature menopause from surgery, chemotherapy, and/or anti-hormonal drug treatments. They cannot take hormone replacement therapy because this could cause the cancer to come back and potentially kill them.
  • Chemotherapy kills fast growing cells, including all the linings to sexual organs. This makes intercourse painful, even dangerous should the patient contract a bacterial infection that the body can’t destroy.
  • Cancer treatment is exhausting. Just doing daily activities like showering can send one straight to the couch for a long rest.

One of the biggest issues I hear from women I mentor on the breast cancer helpline who have metastatic disease is that at the very time when they need to be closest to their life partners, their lack of desire can pull them apart. Some cancer patients even divorce during treatment. Think Newt Gingrich and John Edwards.

In a few cancer patient publications, there is a line or two about loss of sexual interest from treatment. It’s listed as a minor side effect in those brochures, but not in pamphlets provided by drug manufacturers. So this condition can come as an unpleasant surprise to cancer patients. They don’t know this is normal for most and they feel inadequate, all adding to overall stress levels.

Most oncologists don’t talk about sexual dysfunction before treatment begins and have little to say if patients bring up the subject. There aren’t any clear-cut answers.

I guess you could say that cancer patients are lucky to be alive. What more do they want? Yes, there’s the pain, the loss of appetite, the overwhelming exhaustion, stress on all bodily organs, and the anxiety of not knowing if disease will spread and kill them.

So your deal with the devil is to take treatment, hope for a cure, and face both short term and long term side effects including saying “buh-bye libido” hopefully only for the time being.

An Open Letter to Breast Cancer Researchers: Are You Building Stairways to Nowhere?

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Are You Building Stairways to Nowhere?

Are You Building Stairways to Nowhere?

Dear Scientific Researcher,

What you do is extremely important and provides hope to those like me living with metastatic breast cancer.  The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.

I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies.  You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate.  Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask:  “So how does this study help us save lives or prevent the disease from happening in the first place?”

I realize how difficult it is to obtain funding for your labs and that some of you have had to dismiss some talented members of your teams due to lack of funding.  I have raised over $50,000 for breast cancer research and have lobbied dozens of times on Capitol Hill to secure your research dollars.   I feel your pain.

I have attended far too many funerals cloaked in pink ribbons.  Inspiring women, creative women, and yes, demanding women and men have suffered and died at the hands of this disease.  Each day, those who call themselves survivors, live with dark clouds over their heads housing thunderbolts of lingering fears that recurrence and death is in the forecast.

When I read funding proposals, it makes me aware how little you really know about curing breast cancer in humans.  You don’t know how many breast cancers start, how to accurately detect breast cancers, why mutations happen, why the immune system ignores these aberrant cells, how cancer cells can survive throughout the body and colonize in new locations, or how some cancer cells resist treatment.  Sure, you know some, but not enough.

We have spent billions of dollars on breast cancer research, from both the public and private sectors.  You have written thousands of peer-reviewed journal articles on the subject.  You have attended and presented at hundreds of breast cancer symposia, costing millions of dollars and thousands of hours.

Securing study funding, publishing papers and presenting findings seems to have become an end unto itself for some of you.  Finding real cures for real people appears to have been lost in the shuffle.

You study signaling pathways that end up worthless as targets for treatments due to the body’s ability to create redundant systems.  You study different dose levels of the same thirty-year-old chemotherapy treatments on lab mice and proudly boast that the new combination extends life a few months.  You repeat unsuccessful research studies because prior scientists failed to produce their findings.  You plunge into nanoparticle technology to find the right shape to fit into cell receptors in order to develop a toxic payload into cancer cells, and discover the keys can’t find the locks.  You study the neighborhood around cancer and try to figure out if that’s what fosters new cancer formation.  You spend years discovering new cellular mechanisms, write about them, and then look for your next project.

All of this:  Yet people keep dying.  At least one has died from breast cancer as you read this letter.

But are you building stairways to nowhere?

What happens after you publish your findings?  When you finish a project what happens next?  How are your results applied to get us any closer to actual treatments or prevention?  How do you hold yourselves accountable to clinicians, patients and the general public?  How can you make it less about “publish or perish” and more about saving lives?  How can you make sure you ask the right questions before starting any new project instead of building a stairway leading to nowhere?

Are you satisfied with your own progress?  How would you feel if someone undergoing treatment looks over your shoulder as you work?  Would you personally go to your friends and family, asking them to donate to the work you are doing right now?  If your own loved-one was diagnosed with breast cancer, what steps would you take to make sure they would not perish from the disease?

These are important things to think about.  I know you work hard.  I work hard at staying alive.  Both jobs are difficult.

What I’m asking you to do is to consider your role in the fight to end breast cancer.  Are you winning or losing?  What can you personally do to ask the right research questions that are not redundant or merely interesting, but are important to finally putting an end to breast cancer?  How can you make sure that your research makes a real difference and foster translation into the clinic?

I’m fighting the battle every day.  Please do what you can to fight with me.  Put an end to building stairways to nowhere.

Sincerely,

Sandra Spivey

#$@*-Off For Breast Cancer Awareness

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Flipping off breast cancer awareness month

Flipping off breast cancer awareness month

The much-hated (for me) Pinktober is now in full swing.  What is Pinktober?  It’s the 10th month when yogurt suppliers, kitchen appliance manufacturers, carmakers, Facebook pages and other media messages are tagged with “breast cancer awareness.”  They want you to buy stuff and do stuff for the cause.  They want to take your money, later donate some of it, and not tell you how they use the funds.  Some call this “Pink-Washing.”

This year, there is a “Go Braless for Breast Cancer Day.”  WTH?  What does going braless have to do with breast cancer and what are people really thinking?  Will men go all day with an open fly for prostate cancer awareness?  Will teens decide to cut themselves for leukemia awareness?  Maybe women with mastectomies and no reconstruction ought to go shirtless for the day.  Wouldn’t that raise some “awareness?”

http://www.facebook.com/events/101134023311845/

If someone wants to relate to those who have walked the path of breast cancer, there is a Go Bald Day on the 18th of this month.  You order and wear a skullcap to honor those who have experienced cancer.

http://beboldbebald.org/

Perhaps for breast cancer awareness, just put a big red X on a section of your breast that you might have lopped off should you end up with the disease (you can do this if you’re a man too), put a giant gauze pad over the top, secure the gauze with uncomfortable tape, and wear that under your shirt all day.  Then think about what it might feel like to have something growing inside you, but you don’t know what it is yet and you don’t know if or when it will kill you.  This could be “Be A Nervous Wreck for Breast Cancer” day.  It’s not about “Saving the Ta-Ta’s” – get real, people!

Do NFL players wear pink wristbands because we aren’t aware of breast cancer, and watching 350-pound linebackers in pink accessories cause people to want to look into issues surrounding the disease?  Thank goodness the NFL has an online shop to sell NFL branded breast cancer awareness items.  Too bad their message is “A Crucial Catch:  Annual Detection Saves Lives” when it’s not totally true.  Some of the videos on their pink site, although compelling, do not support the message and are about self-diagnosing the disease and not annual screening.  And the NFL isn’t even putting any cash into this campaign.  You, as a supporter, can bid on the pink items the players wear in the game.  Then your money can go to…um…something.  Lucky us!

http://www.nfl.com/pink

OK.  So I’m being a bit morose.  But seriously, what awareness are we raising this Pinktober?  What is the new news?  Other than writing some insipid remark on your Facebook page “in support of breast cancer awareness,” like answering the question “where do you like to place your purse when driving in the car?”  Now your cryptic posted answer needs to start with ‘I like it on the….’ And wow!  You’re supporting breast cancer awareness!

But I digress.  Again.

What are we raising awareness of?  That people get breast cancer?  That people are living with breast cancer?  We certainly don’t focus on the fact that people are dying of the disease.  Everything is pink and rosy in Pinktober.  Someone might have been sad for a few months, but now, look how happy they are!  They caught it “early.”  Aren’t they the sweetest things?  Don’t you just want to hug them?

Are we listening to those cute twenty-something women with doe-eyes on ads who think they need mammograms when there is no proof at all that mammograms do anything to save lives in women of that age group?  And for that matter, are we aware that mammograms have not been proven to reduce breast cancer death rates in populations under 55 or over 70?

Do we know that death rates have improved only marginally despite the millions and millions of dollars raised in the name of research?  And that we have made only a tiny bit of progress, finally discovering that breast cancers are not alike; that most of the time, breast cancer tumors are filled with different types of cancer profiles, not just one? And that most of the treatments used today are based on discoveries made over 30 years ago?

Do we know that we’re not looking for “a cure” for breast cancer but for several “cures”, because all breast cancers are not alike?  That a drug that kills cancer in one person makes absolutely no impact at all in another?  And that we might kill the bulk of the tumor through surgery, radiation or chemotherapy (the “Slash/Burn/Poison” triplets) but some cancer stem cells laugh at all that hoopla and sit dormant for months or years, and then decide for whatever reason, to start growing?

Are we aware that the 5-year mark of being “clean” after breast cancer treatment means little because breast cancer can easily return ten, twenty, thirty years later, even in the mildest cases?  Do we know that breast cancer is not curable, but it is treatable for many but not all?  Are we aware that someone dies of breast cancer just in the US every 14 minutes even on holidays?

Do we know that mammograms are not like getting a flu shot?  That this screening technique does nothing to prevent cancer; it just detects SOME cancers, while providing huge numbers of false positives causing unnecessary angst and needless biopsies?  Would we want a 40% false-positive rate in dental x-rays but declare it’s OK for breast cancer screening?  (“I’m sorry, Mrs. Spivey, but it looks like I didn’t need to do that root canal after all.  Oops”)

Do we know that we don’t even have a national goal for eradicating breast cancer?  (See http://www.breastcancerdeadline2020.org)  That scientists have only recently started to share their positive and negative research results to prevent repeating unsuccessful studies to eliminate wasted research time and money?  Are we aware that science has found several major links to know how breast cancer acts in the tiniest of cellular mechanisms, but they still don’t know what causes breast cancer to grow in the first place?

There is a lot of awareness that could be raised during Pinktober, but I haven’t seen much that means a whole lot.  It’s turned into a salacious time of the year focusing on “ta-ta’s,” “boobies,” and things that jiggle in the night.  It’s about selling the latest pink-washed wine or perfume or shin-guard.  It’s really not about raising awareness any more.  It’s about the selling of “pink” and exploiting all things feminine.

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