Good News: Reports from Cancer Researchers

In Oncologyland, we love good news.  Today we highlight an article published in the Huffington Post where researchers share their optimism about cancer.  Marlo Thomas writes about the hope seen on the horizon:

Cancer is such a dreaded and scary word, and most of us have experienced its wrath at some point in ours lives — whether through a family member or friend, or through our own struggle with it.

So this being Cancer Awareness Month, I thought it might make us all sleep a little better to ask some of the top cancer scientists in the country to tell us some things (or even one thing) that makes them optimistic about the ongoing battle with cancer.

The exciting news is: they are all optimistic. And at the center of this optimism is DNA.

We all know by now that when DNA is brought into the courtroom it can help prove whether a person is the culprit or not. That’s because every person’s DNA is unique to that individual — like our fingerprints.

Well, DNA works the same way in the lab. The “investigator” looks at the normal DNA of the patient, and then compares it with the DNA of the cancer cell in that patient. Typically, these two samples are going to look more than 99.99 percent the same. But it is that tiny difference that holds the secret to what is causing the cancer. What is needed then is a drug that can correct the problems caused by that DNA damage.

Ten years ago, scientists didn’t have the technology even to find the DNA damage in each patient’s cancer. They used common microscopes to look deep into the cell — but they couldn’t see deep enough. Now, thanks to giant leaps in the science of DNA sequencing, these same scientists can go millions of times deeper into a cell than with a standard microscope — and whole new worlds of information have opened up before their eyes.

“Just five years ago, these classifications of cancer were invisible to us,” the renowned scientific investigator, Dr. Charles Sawyers of Memorial Sloan Kettering Cancer Center, told me. “Now that they are visible, we can create new drugs to target what we can see. It’s why I rush to work every day.”

Dr. Sawyers is not alone in his passion. All of the scientists I spoke to expressed excitement about DNA’s emerging role in the fight against cancer as well as their hope that the public will ultimately grasp the concept of fighting cancer genetically, in order to appreciate these new possibilities.

Pharmacogenomics expert and CEO of St. Jude Children’s Research Hospital, Dr. Bill Evans, explained DNA science this way:

“It’s like when you build a house. The architect draws up a blueprint, and if that blueprint is faulty and the house starts to lean — or even fall down — then obviously the architect has made a mistake. So you must go back to the blueprint and find out where that mistake was made so you can fix the damage.”

“DNA sequencing is the blueprint of a cell,” Dr. Evans continues. “It helps the investigator look at every letter to find out what went wrong and what caused the damage. And so our optimism comes from our ability to look deeper into the cell to see the ‘blueprint’ for the first time, and lead us to the cause.”

Beyond DNA science, the doctors and scientists I spoke to also celebrated the bold steps being taken on the many different frontlines of the war against cancer. Dr. Judy Garber of the Dana-Farber Cancer Institute, who specializes in breast cancer, expressed hopefulness about doctors’ increased ability to treat cancer effectively without leaving the patient debilitated through invasive surgery.

“Less surgery is being done,” Dr. Garber told me, “and when it is, surgeons are taking only one to two lymph nodes where they used to take them all. This lesser amount gives women better movement in their arms and less swelling. And, of course, we have discovered much better treatments.”

Dr. Bob Wiltrout, Director of the Center for Cancer Research at the National Cancer Institute, National Institutes of Health, is equally enthusiastic about the great strides being made in the treatment of prostate cancer — which is currently the second-leading cause of cancer death in American men.

“One of our most exciting breakthroughs is the use of precision approaches to detect even very small tumors with exquisite sensitivity,” Dr. Wiltrout told me. “Not all prostate cancers actually require treatment, and many men are treated needlessly, or end up getting the wrong treatment for their tumors. But with these new techniques, in the future it should be possible to predict which tumors actually require treatment, and which patients can be safely monitored without needless surgery or radiation.”

All of the doctors I spoke to pointed to the increased survival numbers — the holy grail of all medical science statistics — as evidence that we are gaining ground in this fight. “We are saving 350 more people per day in the U.S. than we did in 1991,” Dr. John Seffrin, CEO of the American Cancer Society, told me. “And what’s even more encouraging is that we could get to 1000 per day, if we all did our part — with screenings, diet, exercise, quitting smoking and controlling obesity.”

As someone who has spent many years marveling at the brilliant and painstaking work of the doctors, scientists and researchers at St. Jude, I can attest firsthand to the bone-deep commitment these men and women have made in their fight against disease. They are at it around the clock — every hour of the day, every day of the year. And so when I hear them speak with such optimism, it fills me with great hope for all of us and our loved ones.

“I believe we are entering a golden era in cancer therapeutics,” said Dr. William G. Kaelin of Dana-Farber and the Harvard Medical School, whose expertise in cancer research runs the gamut from the use of “smart drugs” to the current “renaissance” in cancer immunotherapy. “But maintaining this momentum will require that both the public and private sector efforts to eradicate cancer remain vibrant. Science — especially science that transforms the way we think — does not lend itself to predetermined timelines.”

I hope that you’ll join me in remaining as committed to the battle against cancer as Dr. Kaelin implores us to be. We have come too far to let up now, and are closer than ever to that long-awaited cure.

A deeper look at the comments of the doctors and scientists I spoke to appear below. I hope you’ll take the time to read them. In the meantime, happy — and hopeful — Cancer Awareness Month.

Bill Evans, Pharmacogenics expert and CEO, St. Jude Children’s Research Hospital

What gives us such optimism in this new era of cancer research is genomics. Our ability to interrogate the human genome in normal and cancer cells is providing us with incredible insights into what causes cancer — what causes a white blood cell to become a leukemia cell, for example, or what causes a brain cell to become a brain tumor. We can now sequence DNA more rapidly and cheaper than ever before, and it improves every day — cheaper, faster, better. This leads us to believe that some day soon we will be able to sequence every patient’s genome, and use that to guide treatment. Back in the 1990s, it cost billions of dollars to sequence the first human genome; soon, it will cost less than $1000 dollars.

Computing technologies are allowing us not only to interpret genome changes, but to also develop sophisticated models of how multiple gene mutations interact to cause cancer. These discoveries are leading us to new targeted therapies — drugs that target the specific abnormalities that cause cancers or cause them to spread, which are more effective and less toxic than current therapies.

Also, electronic medical records are providing new tools that guide physicians in making treatment decisions, often incorporating genetic information into drug-prescribing decisions. That means that when a doctor writes a drug prescription, he or she will be signaled to consider specific genetic tests that will help determine if that is the right drug or the right dose for that individual patient. No doctor can remember all of the genetic tests associated with a drug, but computers can, and they can remind and guide physicians.

Finally, imaging technologies are allowing us to “see inside” cells, and visualize how specific proteins interact to cause diseases and respond to treatment. We are now able to examine diseases at a much deeper level than ever before.

Judy E. Garber, MD MPH, Dana-Farber Cancer Institute

Here are five things that make me optimistic about breast cancer:

1) The observation that breast cancer is not one disease, but rather at least three specific, molecularly-defined diseases. This makes it possible for us to devise specific treatments for each subtype, allowing for more effective therapies for women, and avoiding the side effects of treatments that would not be effective for her particular breast cancer.

2) Targeted treatment for HER2+ breast cancer. The development of Trastuzumab — an antibody against the HER2 protein — has completely changed the outlook for women diagnosed with breast cancers driven by the HER2 gene. This type of breast cancer was among the most aggressive; but using Trastuzumab in early treatment, women with HER2 breast cancer can look forward to beating their disease. And newer therapies currently in development may be even better than Trastuzumab.

3) Sentinel lymph node surgery. Women used to be afraid of breast cancer treatment because they expected to be left with a swollen and painful arm. The swelling occurred because surgeons had removed many lymph nodes from under the arm, disrupting normal drainage of fluid. Today, surgeons have proven that they need only remove a few nodes called “sentinel” nodes — those to which cancer cells are most likely to go and leave a tumor. Consequently, in most patients, Lymphedema — the swollen arm — is now much, much less common.

4) Greater focus on young women with breast cancer. As terrifying as breast cancer can be, it often seems more terrible when a young woman is stricken. But programs are now recognizing the special needs of young women and their families, and working to make sure that those needs are addressed — from helping to protect the woman’s fertility (expecting them to survive and be able to have children); to considering genetic testing to explain why the woman developed breast cancer; to determining whether close relatives share an increased risk; and improving plastic surgical options.

5) Breast cancer risk reduction. Wouldn’t it be best to prevent breast cancer altogether? In fact, there has been progress in this area as well. Three medications have been shown to reduce the risk of hormone-related breast cancer — the most common type of breast cancer — by at least 50% in women at increased risk: tamoxifen, raloxifene and exemestane. There are also emerging technologies for early detection, like MRI, and new approaches that help women estimate how much risk they have, such as genetic testing. The next decade should see more progress in preventing breast cancer.

There are many more reasons for optimism in breast cancer. We are on the brink of a whole new era in cancer treatment and prevention in general, but in breast cancer, we are building on the research of the last 40 years. We must maintain the momentum, and make breast cancer something women “used to worry about.” Research funding is critical to this effort.

Charles L. Sawyers, M.D., Investigator, Howard Hughes Medical Institute, Memorial Sloan Kettering Cancer Center

There is much talk today about personalized medicine, in which treatment is more closely tailored to the specific needs of individual patients. This concept is rapidly changing the face of cancer treatment, with many examples of new drugs that attack tumor cells that have specific “driver” mutations in its DNA. Certain types of leukemia, lung cancer, melanoma and sarcoma that were uniformly fatal just a few years ago are now treated routinely by swallowing a couple of pills each day — just like blood pressure medication — without the side effects of chemotherapy.

Admittedly, some cancers can come back many years later, and tumors can develop resistance to these new drugs when they are given alone. So we need to learn how to use them in combinations. The good news about resistance to the new drugs is that we already understand why it happens, so we should be able to find the curative combinations more quickly.

No, we do not yet have cures yet, but we are much closer than we have ever been. There has never been a time of greater optimism about the future of cancer therapy.

William G. Kaelin, Jr., M.D., Professor of Medicine, Dana-Farber Cancer Institute and Harvard Medical School

I trained as a clinical oncologist back in the 1980s. Almost all of the anticancer drugs available at that time were developed based on their ability to kill rapidly dividing cells rather than on a deep understanding of the molecular abnormalities that caused cells to become malignant in the first place.

All of this changed with the publication of the first draft of the human genome DNA sequence 10 years ago. Now, for the first time, cancer scientists had a “parts list” that enabled them to systematically identify which genes are responsible for different cancers. This search has been aided by breathtaking advances in our ability to rapidly sequence the genomes (DNA) of cancer cells. In hindsight, cancer science before these advances was a little like trying to fix a car without being able to look under the hood.

The new technologies — coupled with good old-fashioned detective work — have helped us produce a rapidly growing list of potential new “smart drugs” in cancer treatment. This includes cancers that have historically been difficult to treat with standard chemotherapy — such as melanoma and lung cancer.

Naysayers are quick to point out that the responses to this new generation of “smart” drugs are often quickly followed by relapses–sometimes in a matter of months. That’s because the cancer cells begin to develop a resistance to the drugs. (Even a tumor smaller than a golf ball will contain billions and billions of cancer cells; if even one is resistant, it will proliferate despite the treatment.) The lesson learned during the last century was that the best way to minimize drug resistance when treating diseases such as AIDS or TB was to combine several drugs — or a “cocktail.” And there is every reason to believe the same principles will apply to the new generation of anticancer drugs.

One final area that gives me great hope is the renaissance in cancer immunotherapy. For most of my adult life cancer biologists have been curing cancers in mice with increasingly clever manipulations of the immune system- only to have those approaches fail in the clinic. In fact, until recently I was resigned to being an “immunoskeptic.” Fortunately, our knowledge of the human immune system has matured to the point where we are finally seeing the first real successes in the clinic. One promising approach involves new drugs that remove the camouflage that cancer cells use to avoid being killed by the immune system.

I believe we are entering a golden era in cancer therapeutics, but maintaining this momentum will require that both the public and private sector efforts to eradicate cancer remain vibrant. Science — especially science that transforms the way we think — does not lend itself to predetermined timelines and deliverables; and this era will be imperiled if the basic research needed to fight cancer is under-resourced and overly managed.

Bob Wiltrout, Director, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH)

The Nation’s long-term financial support for basic cancer research has laid the foundation for many new advances that are changing our outlook on the nature of cancer and raising new hope for more effective treatments. We now know that cancer is actually a collection of diseases that share some traits, but also have traits that are unique to that particular cancer. These unique characteristics are like a fingerprint, allowing us to develop and use specific drugs tailored to attack certain critical functions in each patient’s cancer. Within the NIH, several investigators have now begun to demonstrate the effectiveness of such precision attacks on various cancers, including lymphoma, kidney cancer, and prostate cancer, among others.

For many years one of the traditional weapons physicians used against cancer has included various forms of chemotherapy, which often kills cancer cells only somewhat better than normal cells that are vital for human health. Through the work of many scientists, we now know there are specific genes that are required to allow cancer cells to grow and survive. Such genes have been termed the “Achilles heel” of cancer, and drugs developed to neutralize the effects of these genes offer exciting possibilities for developing new and more effective drugs against cancers.

Another exciting breakthrough is our emerging ability to detect even very small tumors with exquisite sensitivity–particularly cancers arising in the prostate gland. Prostate cancer is the second leading cause of cancer death in American men, yet not all prostate cancers actually require treatment, and many men are treated needlessly, or end up getting the wrong treatment for their tumors. Some exciting news here at NCI, NIH is that we are now using magnetic resonance imaging (MRI) to accurately identify the location, size and extent of a prostate cancer — and combining this information with ultrasound (another detection technology) — to allow targeted biopsies (tissue sampling) of precise, suspicious abnormalities identified on the MRI. If those biopsies shows that the tumor is not aggressive, it can be safely monitored or locally treated, thus avoiding major surgery or radiation. And if the tumors are aggressive, patients can receive the right treatment early enough to prevent the feared complications of the tumor spreading to other organs.

John R. Seffrin, PhD, CEO, American Cancer Society

A century ago, cancer was the eighth leading cause of death in the U.S. Today, it is the second, after only heart disease. The good news is, the majority of people today survive cancer — and many thrive. There are nearly 12 million cancer survivors living in the U.S. today. But we also know that about half of cancer deaths are preventable. Obesity, lack of physical activity, and poor nutrition are major risk factors for cancer, second only to tobacco use. Approximately one-third of cancer deaths in the U.S. each year can be attributed to poor diet and physical inactivity, while another one-third are caused by use of tobacco products.

We have seen more than 15 years of decline in the cancer death rates in the U.S. Thanks to the progress we’re making against the disease, we have helped prevent more than 1 million cancer deaths since death rates started dropping in the early 1990s.
Overall, we have opportunities today that, at one time, we could only dream of. The stars are aligned for us to have an incredible impact on cancer. A few key tools and platforms have helped us press forward:

• We have mapped the human genome.
• We have established the world’s first global public health treaty, the Framework Convention on Tobacco Control. Its provisions, if fully implemented, could save countless lives from tobacco.
• We have platforms like the American Cancer Society Cancer Action NetworkSM and C-Change, which bring people together to fight cancer; and a nationwide grassroots movement of advocates that is committed to ending cancer unlike any we’ve seen before. ACS CAN has volunteers in every Congressional district in the nation
• We have vaccines that we know can save lives, such as the human papillomavirus (HPV) vaccine to help prevent cervical cancer.
• We have “best buys” — proven, cost-effective strategies we can implement around the world to help save lives.
• And new and more targeted therapies are emerging every day.

As we work to accelerate progress against cancer, we at the American Cancer Society believe we can move from saving 350 lives per day from this disease in the US to 1,000 every day in this country — and, one day, thousands per day worldwide. That will truly be a world with more birthdays.

Hope for more birthdays.  Hope on the horizon.  Here at the OncWorker, that hope makes are hearts happy.  Here’s looking forward to the future and what research can provide us – hope and cures.

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Cooking for Others During Difficult Times

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Purposeful Reminder

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Sometimes, the job is difficult.  I knew this going into graduate school.  I devote one lecture each semester I teach to the importance of self care for social workers. As I share with the students, the largest component of our job is using ourselves when working with clients. 

My job is often rewarding.  Seeing a client achieve the goals they have set, being present with children in a support group when you can sense they have built their community, and walking with a client through poor health diagnosis to good health are wonderful benefits to my job. 

Today the job was hard; having to sit with a client who ached for assurance that I could not give makes my heart hurt. There was no good or right answer for them, and all I could do was be present with them.  I understand the importance of just being with the client, its value.  And yet, it can be difficult sometimes to see another human being’s struggle. 

This experience today has meaning behind it in that it is the purposeful reminder of why I am on this play mission.  Why I am musing around the playground.  Playing provides refueling so I can walk with my clients, wherever it may lead. 

“The Lorax” was my play this week.  First feel good movie I have connected with in an long time.  Of course, I had the Play Coach, Mr. Jack, with me.  Tonight, I think of “The Lorax” and his words: 

“Unless someone like you cares a whole awful lot, nothing’s going to get better, its not.”

See you later. Its time to play, so I can keep caring a whole awful lot. 

 

Melanie Goldish: Creating Strength, Courage and Hope

We are so honored and privelaged here at the OncWorker to introduce today’s guest blogger! Today we introduce Melanie Goldish to you.
 
Melanie Goldish is the founder of Supersibs, the global nonprofit organizaiton that supports more than 250,000 siblings of children with cancer. When a child is diagnosed with cancer, the whole family is thrown into crisis, but in the rush to assist the ill child, the well siblings are often ignored. In 2002, Melanie set out to change this reality…..and change it she did!  We’ll let Melanie share the story about how she changed the world of oncology for the better by addressing the needs of siblings head on.

 

Imagine a world where suddenly everything around you makes no sense at all…. where loved ones suddenly speak in whispered voices when you enter the room; wipe tears from their eyes so you “won’t see”; are gone when you arrive home from school or have a teacher conference; where you’re ripped apart from the person who just yesterday was there with you to laugh, fight, play, tease and hang out with every day… and if this were you, all you know is that your brother or sister has cancer.

Each year more than 18,000 young children and teens in the U.S. alone (and thousands more worldwide) face the frightening “emotional diagnosis” of cancer as their sibling faces down this disease. And tragically, until recent years, no one had considered the lifelong impact on this vulnerable population – the “shadow survivors” – the siblings.

Prompted by our own family experience and supportive research, my SuperSib son Spencer, Survivor son Travis and I founded the national nonprofit organization, SuperSibs!, in 2002 from our basement. Now, 9 yesars later, SuperSibs! has grown to an organization that is serving over 26,000 vulnerable siblings and their families as they face childhood cancer.

Now we’re no longer in my basement! Our dedicated staff and partners know that it’s vital to change the culture of oncology care to ensure that siblings of children with cancer are honored, supported and recognized. Why? Because if supported, siblings can emerge through and beyond this cancer journey with resilience, strength, courage and hope. We can prevent… or even eliminate… much of the lifelong negative impact from this challenge. Now THAT’S worth our attention — TOTAL family healing!

It’s high time to bring integrated, on-site sibling support to hospitals and cancer organizations as a standard of care. And now, thanks to a special LiveStrong Community Program, 25 U.S. hospitals/organizations are launching SuperSibs! branded, evidence-based programming right on site to help siblings heal. Hooray for progress!

I remember seeing the lost look on my own son’s face like it was yesterday. For Spencer, as well as many thousands of “cancer siblings”, the emotional impact continues to surface at various times through maturity. The good news? Finally, there is progress… we are seeing more awareness, programs and partnerships to solve this part of the healing puzzle.

Now, no longer must 12 year old “Brianna” feel secretly wracked with secret guilt, fearing she caused her little brother’s cancer when she pushed him down on the playground.

No longer should “Ravi” feel afraid to tell anyone that he thinks he might catch cancer from his sister.

No longer should 18-year old “Jeanine” struggle in silence with an eating disorder to punish her own body, a disorder which she has traced back to the death of her sister. “Jeanine” was her sister’s bone marrow donor – two times.

No longer should 16 year old “IIvan” have to feel isolated, helpless, insignificant and alone… that there’s no one who truly understands or knows how to support what he is feeling and living each day.

No longer should dedicated mom “Olivia” feel the anguish of her reality: “As my child with cancer got better in the hospital, my ‘well child’ at home got worse.”

As one adult SuperSib friend said to me: “It’s not ok that siblings are unintended collateral damage in the war against cancer.” I couldn’t have said it better. So please, remember that when a child is diagnosed with cancer, siblings are profoundly affected… for one year, three years, five years… a lifetime. Together, we can “redefine the cancer experience” for these deserving SuperSibs! brothers and sisters… so they can survive and thrive through and beyond the cancer journey, too.

Check out http://www.supersibs.org to refer a family for our free ongoing services, to learn, volunteer, or donate to our cause. Thank you for helping us make a meaningful impact on our SuperSibs!!

~ Melanie

Melanie Goldish

Founder SuperSibs!

660 N. First Bank Drive Palatine, IL 60067

Main  847-462-4742

mgoldish@supersibs.org

http://www.supersibs.org

Travis, Dr. Sanjay Gupta of CNN, Spencer and Melanie at the LiveStrong Global Summit in Dublin, Ireland.

If you have any questions, thoughts or ideas, please post them below.  We will be sure to forward them on to Melanie!  Many thanks to Melanie for taking time to share her experiences with everyone here at the OncWorker! 

Surprises Abound This Summer

Just a shameless plug for….drum roll please… our guest bloggers!  We have invited a few folks who have been impacted by the world of oncology who have graciously agreed  to join us as our special guests!  Stay tuned to read these awesome additions to the OncWorker Blog!

Summer Reading

Summer is really here.  Being a Midwesterner, we often go through a phase of weather where we are not quite sure if summer is here.  It finally seems to have settled in; besides warmer temperatures the flip flops abound, flowers are blooming, and there are baseball games being played all over my neighborhood.

This makes me wonder…. what you are reading this summer?  What is on your summer reading list?  Maybe your a mystery fan.  Perhaps you are a romance reader.  Or maybe, your a person who searches for books who have meaning for you.

Since I am at the beginning of a research project, and an oncology one at that, I am finishing up “The Emperor of All Maladies: The Biography of Cancer” written by Siddartha Mukhejee. What a profound book.  Yes, it is the biography of cancer.  But it is also a biography of cancer awareness, research and treatment.  It has recently won the Pulitzer Prize and worth the read.  Maybe your a knowledge seeker and wish to know all you can about the ins and outs of cancer. Research and details abound in this book, and if those float your boat, this is a worth while read for you.

I am also reading two other books.  Of course, this is an blog about cancer, and therefore the books I share have to do with this topic.  They also have to do with friendship, life lessons and meaning.

First let’s about chat friendship.  “The Light Within”, written by Dr. Lois Remondetta and  Dr. Deborah Sills,  ebbs and flows with a friendship that starts with a cancer diagnosis. It addresses the blurry lines that come when doctors and patients face existential issues as they come together to fight cancer and allow their relationship to be a human one, not just a professional one.  It celebrates life while navigating the impact cancer can have on a life.  A good life.  One full of joy and aware of mortality.

Moving on to a rich read, focused on life lessons and you have “Bobblehead Dad: 25 Life Lessons I Forgot I Knew” by the amazing new author Jim Higley.  Higley  is diagnosed with prostate cancer at 41.  His book is an inspirational account of the impact  his diagnosis and cancer journey has on him.  It shares  the forgotten life lessons that were planted by his parents during childhood and how those rich lessons bloom and grow. Higley takes his cancer journey as a bop on the head to slow down, reflect on those lessons, and determine how he wants to really live, not bobble along through life meeting the expectations of our entrepreneurial American society.  I was privileged to read this book before it went on the market and can tell you that Jim is an insightful and powerful storyteller, who entertains the reader with his genuine and passionate narration.

Summer reading – educational, inspirational, and enjoyable.  Reading these books reminds us that, although cancer is difficult, it can also be wonderfully life changing.

Do tell – what are you reading?

A Place in the Country for the Caregiver

I am often asked about my work.  In the beginning of my work in oncology, I tended to share that I was a social worker, leaving the oncology part off.  I chose to do this because once I’d say “I’m an oncology social worker” the conversation changed.  People wanted to hug me, or would share that I was unique or special somehow because oncology and I chose each other.  “I don’t know how you do that kind of work” or “It must be depressing” were often the replies I received from my conversation partner.  I do the work because I can, and those who can do this work should. Personal motto of mine,one that I learned through my work with an awesome pediatric oncology nurse.  But that story is for another blog.

What brought me to oncology? How do you end up working in a world that many consider depressing, or full of death?  Even when I share that I have THE BEST job in the world, and that I see the best in humanity each day, I can tell people don’t believe me. They have that , “Well aren’t you a crazy one!” look on their faces.  So often the question isn’t why oncology, but how?  How did you end up in oncology?

Here’s the thing that many who work with me professionally don’t know:  I am also a survivor.

Right. So.  There you have it.  Thanks for reading the blog and have a good day.

I am a secondary survivor.  I was not the patient, but the patient was a member of my family.  Once you are initiated into the world of oncology, you do learn that this is a family disease.  It impacts everyone, including the caregiver.  I was the caregiver to one of my children.  Our oncology experience came with one additional twist – the disease was rare, might be a cancer, might not, depends whom you ask.  But I am hear to tell you, just as our oncology team would tell you, makes no difference what you call it, oncology is oncology.

Our family survived due to great support from angels disguised as family and  friends, support organizations such as SuperSibs,and a great oncology team.  And we have been on the New Normal path for more than three years!

I was recently speaking on this very topic, life in the New Normal. When people begin treatment for cancer, they often look forward to the end of treatment and returning to the way things used to be. This is generally not the case; cancer changes people in many ways. I covered things like the physical changes that can come with treatment, the changes survivors often experience in their relationships, the financial impact of treatment, and the strength that survivorship brings.  I was sure to share that caregivers are survivors, too.  Their cancer experience also begins on the day of their loved ones diagnosis.  Oftentimes, however, there is so much focus on  the cancer patient that the caregiver is on the sidelines, feeling guilty for how they are experiencing cancer.

Living with someone going through treatment and subsequent recovery can be, well, a real pain in the butt.  Someone taking steroids is not fun to live with. Wondering if your loved one is going to survive and feeling hurt and angry after the recent emotional outburst that came your way due to the side effects of their treatment protocol is exhausting. Rarely is there a time or a place for a caregiver to truly be real, or share what their experience is like.  Can you imagine saying, “Yeah, my husband is a really monster to live with right now.  I’d like to knock his lights out or get a little place of my own in the country until this phase of treatment passes”?  Often these are just the feelings that the caregiver is experiencing, and  they don’t know where or how to share them.  Talk about this? Yeah right.  Who is going to understand those types of feelings when I just feel plain guilty for feeling them?

Families and caregivers are often referred to as the “Other Cancer Survivors”.  They don’t experience the physical impact of the disease, but their emotional distress can be the same or  sometimes worse than the patient’s.  Research is just beginning for this group of cancer warriors, but we are finding that the rate of anxiety and depression found in caregivers is often greater than that experienced by the cancer patient. Caregivers are survivors, too, and need support as the fulfill the critical role on their family’s cancer team. They need to be asked how they are doing, and what they need in order  to cope with their own issues of survivorship.

During our question and answer session, I was directly asked if I was a survivor. This has not happened before and it was time to be direct. Yes, I am.  I am a caregiver and I am a survivor.  I do the work that I do because I can and I love it. Truly. I work with survivors every day, and many are caregivers, not just patients. Amazing people, doing amazing things, just by putting one foot in front of the other.

Know a caregiver?  Hug them, help them, and share that you understand that they are a survivor too.