Sharsheret

Evan Lipson

Evan Lipson, M.D.

Rochelle Shoretz was first diagnosed with early stage breast cancer at age 28, and then with metastatic breast cancer at age 37.  She is now the founder and executive director of Sharsheret, a national non-profit organization that provides support and resources to young Jewish women and their families facing breast cancer.  Despite the sadness her experience with cancer may have brought her and her loved ones, Shoretz says cancer gave her an opportunity to do what she loves and put her skills to use for an amazing cause.  "When I reflect on my own life, because of what I've done with cancer, I've had it all," she says.  Shoretz believes the impact of the cancer community is great and feels privileged to be part of that voice.

Click below to hear Rochelle tell her story.

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The Data

The following post was written by Jason Cherish, a colorectal cancer patient on his CaringBridge Journal page regarding his treatment and involvement with Swim Across America Baltimore.

Jason Cherish and his girlfriend, Morgan

"I am really going to miss my chemotherapy treatments," said nobody. Ever.

Having said that, I am very fortunate to be undergoing these treatments for my diagnosis, colorectal cancer.  The data suggests that when a male my age with a similar pathology report has the opportunity to enjoy these Xeloda pills and Oxaliplatin infusion treatments, the chances of that male's cancer recurring are reduced by 15%.  My doctors tell me that without chemotherapy there was a 35% chance that anal-Qaeda would re-spawn.  Now I am looking at 20%.  Those are decent odds, no doubt, but it is important that I am ready to kick cancer in the teeth again should I end up on the 2 in 10 side of that proportion.  I mean, let's be honest, when I woke up Friday, November 4, 2011 the stats said I had an infinitesimally minor chance of being diagnosed with cancer later that day...but reality said there was a 100% chance I had already had it.

My point is that statistics are more reassuring when you stay on their good side...and the good news is the "good side" of cancer survival statistics is bigger today than it has ever been. The bad news is it ain't nearly big enough.

A lot of people will tell you that beating cancer is all about staying positive.  The problem is, we can all name some great people with positive attitudes that cancer took from us. I've mentioned some of them here before.  Of course my faith in God has been integral to weathering this fight, and I certainly believe that mental toughness and a warrior's spirit are nice to have in this situation...but if Peter Bergen could have interviewed anal-Qaeda before Doc Hopkins and I commenced the cancer curbstomp, I think anal-Qaeda would have told Peter that it was way more concerned about the radiation, surgery, and chemotherapy than my sunny disposition.

I am beginning my 10th week of chemotherapy and finished my fourth (of six) infusions on Thursday.  And with the exception of Round 2, which culminated with me spending the 4th of July in the George Washington University Hospital emergency room, I've won every round.  Some days are physically taxing, and the side effects are pretty doggone annoying, but the data suggests that if I just keep putting one foot in front of the other, there is a good chance that I will get to move on with my life in late September.

Deep down, however, the fact that I (probably) get to live while better men and women lose the same fight really bothers me.  The reason I am fighting hard and trying to keep the "poor me" to a minimum is that I am acutely aware of how lucky I am to be experiencing any side effect other than death.  Living is also a potential side-effect of radiation, surgery, and chemotherapy and I think I owe it to a lot of people to see what I can to do promulgate it.

A few months ago I got involved with an organization known as Swim Across America (SAA).  SAA uses swimming-related events as a vehicle to raise money and awareness for cancer research, prevention and treatment.  I've already had the pleasure of interacting with a number of SAA volunteers, including several Olympians, but being the beneficiary of life saving research, facilities, and treatments funded by  SAA is by far the biggest pleasure I owe to the organization.

I was first approached by Hopkins about getting involved with SAA in May...they asked if I would be willing to tell "my story" as part of a short promotional video. At first I thought we were talking about a 30 second cameo as part of some larger production...but as it turns out we spent two fun filled days shooting footage.  The video was produced by my new friend Laurie Singer Sievers.  Laurie is an award winning network television news producer having won six Edward R. Murrow Awards and a National Emmy.  She has produced numerous news programs for CBS, NBC and ABC, covered six Olympic Games, 12 Super Bowls, 12 World Series and 10 NCAA Final Four Tournaments.  It was really special to hear Laurie's stories about Michael Jordan over lunch on the farm, but I felt a kinship with Laurie for other reasons as well.

Laurie lost her husband, Leroy, to cancer in 2008.  Leroy, an award winning war correspondent, was diagnosed with colon cancer in 2001.  He beat it, but four years later, the cancer returned in his brain and lungs. Leroy was told he had less than six months to live, but he soldiered on for almost three more years of radiation, chemotherapy, and surgery.  During the fight, Leroy used his professional gifts to strike a chord with the cancer-fighting community.  In the honest, unvarnished, authentic tone only a veteran war correspondent can muster, Leroy relayed his own fight with cancer on NPR and via a daily blog called "My Cancer."

Leroy not only talked about the all too familiar polite/awkward silences that come with cancer, he also chronicled his internal monologue about whether or not it was still worth it to see his optometrist or buy new pants. He also hoped, publicly, for things like living long enough to read the final volume of the Harry Potter series. He did live long enough to finish the series and report about it on his blog, but in 2008 Leroy learned his cancer was growing uncontrollably all over his body and that his doctors were out of treatment options.  Leroy passed away on August 15, 2008. His "My Cancer" blog, renamed "Our Cancer," is just one of many parts of Leroy that live on to this day. Laurie continues to pen updates and a community has formed around the blog at Hopkins and beyond.

What kills me about Leroy's story is that we ran out of treatment options to give him long before Leroy ran out of the will to live.  I can't speak for Laurie, but I am involved with Swim Across America because I don't think that should ever happen.

To that end, the Baltimore SAA chapter raised over $900,000 for the Swim Across America Lab at the Sidney Kimmel Cancer Center at Johns Hopkins since 2010.  Morgan, my girlfriend and I want to contribute financially too. So Morgan is currently training for an SAA mile swim event at the Meadowbrook Aquatic and Fitness Club in Baltimore, home of the Michael Phelps Swim School.  The swim takes place on September 23rd, 2012...three days after my (hopefully) last Oxaliplatin infusion.  If you are interested in swimming or donating please let me know.

Visit our Team Bear page.


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The following post was written by Shaun Morris, student intern in the Office of Public Affairs at the Johns Hopkins Kimmel Cancer Center.  Cheers to you, Shaun, and we wish you a bright future and successful career in science communications.

It’s incredible that I’m finishing up my third summer here as an intern. Embarrassingly, I began this science writing internship with only a vague awareness of what a science writer actually is. At the time, science and writing seemed like mutually exclusive fields. But over the past three years, I’ve gained an immense amount of appreciation for the craft.

The importance of scientific research is irrefutable. What’s also undeniable is science’s tendency to be inaccessible. So, we have these monumental scientific and medical breakthroughs, but we lack an audience capable of deciphering these phenomenal, albeit confusing discoveries. If the goal of scientific research is to better the lives of others, what’s the point of research if no one knows about it?

Especially with cancer, science writers are essential to the process because they inform the public about the status of major breakthroughs, allowing patients to make more informed decisions about which type of therapies to begin or which clinical trials to pursue.

I’m incredibly proud that I was able to, in some small way, assist the brilliant Kimmel Cancer Center faculty and staff in communicating how they provide extraordinary care to cancer patients and survivors.

--Shaun Morris
English Studies Student at the University of Maryland, College Park

 

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Michelle Potter

Michelle Potter

The 2012 London Olympics have come and gone, and history has been made. The United States won a total of 104 Olympic medals, and, as an American, I couldn’t be more proud of our Olympic athletes.

But each day I walk the halls of our Cancer Center, I meet patients who are worthy of gold medals in their race to beat cancer.  They are my heroes.  Facing a daunting battle with grace and determination, they hurdle through endless hospital visits, tests, medicines, side effects and everything else that comes with cancer.

Most of us aren’t athletes of Olympic caliber, but we can all “go for gold” in supporting cancer research by participating in Swim Across America Baltimore.  Swimmers and volunteers are signing up now to participate in the event, and donations are mounting to benefit the Swim Across America Laboratory at the Kimmel Cancer Center.

An inspiring story comes from Jason Cherish who shares his experience with colon cancer and explains why he and members of Team Bear will swim during this year’s event.  As Jason says, it’s about “funding research that saves lives.” Now that’s what I call an Olympic spirit.

 

 

 

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Evan Lipson

Evan Lipson, M.D.

Mike Whittles was a high school football coach who found strength and support from his family, his friends, and his team. A well-known figure in his community, Mike was open and forthright about his diagnosis of pancreatic cancer. His ability to 'make every day count' during his battle against the disease was inspiring to students and colleagues alike. His recent death was covered by the Baltimore Sun.

Click below to hear Mike tell his story.

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In this month's Cancer News Review podcast, Dr. William Nelson, director of the Johns Hopkins Kimmel Cancer Center discusses the top stories in cancer research. 

First, he discusses recent news of DNA sequencing efforts in leukemia.  As the availability of genome sequencing technology grows, we can inventory all of the acquired defects that contribute to cancer, he says. Finding cancer's "Achilles heel," the driver defects that spur cancer is the goal.  A cancer researcher at Washington University who has leukemia underwent DNA sequencing and researchers found the specific abnormality that drove his cancer.  Luckily, there was a drug already available that targets the abnormality and was used successfully to treat the researcher's leukemia.   Nelson says we are now beginning to use genomic sequencing to inform clinical decisions, and it will be important to determine regulatory standards to applying this technology.

In recent research appearing in the New England Journal of Medicine, Nelson discusses a treatment for aplastic anemia.  Researchers had success using a treatment that mimics the action of hormones that helps make platelets and bone marrow.  He says we'll need to know more about its benefits and safety before the drug can be widely used.

In the podcast, Nelson also discusses two Johns Hopkins-led research studies, including drugs that boost the immune system and a poison pro-drug approach to treating cancer.  He predicts we may see more of this type of research in the future.

Program Notes:

0:15 DNA and RNA sequencing for Leukemia
1:15 DNA and RNA help with direction of treatment
2:15 Cost of sequencing  
3:00 Therapy for Lung Cancer
4:10 The benefit of the therapy
4:26 Unique targeting for the therapy
5:26 The antibodies treating advanced cancers
5:43 Treatment for aplastic anemia
7:00 Long term benefits and effects of Eltrombopag
8:00 A common weed treating cancer
9:05 New strategy for cancer therapy

 

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Important Tips from Cancer Prevention and Control Expert Dr. Elizabeth Platz

Focus on changing your lifestyle behaviors where we have evidence of a strong link. Often these lifestyle changes can also reduce your risk for other major chronic diseases, like heart disease and diabetes. You might as well get the most from your efforts, so choose healthy aging as your goal.

So, what are these lifestyle behaviors?

1. If you smoke, quit.

Did you know that in addition to lung, oral, and esophageal cancers, smoking also causes bladder, kidney, and pancreatic cancers? There are immediate and long-term benefits of quitting smoking. For example, a smoker’s risk of lung and other smoking-associated cancers decreases after quitting. In fact, by 10 years after quitting, the risk of lung cancer is half that of someone who keeps smoking.  Learn how to quit smoking

2. Maintain a healthy weight.

If you are overweight or obese, lose weight. Otherwise, maintain a healthy weight. To reduce your risk of cancer, try to keep your body mass index (BMI) between 18.5 and 25 and your waist circumference below 35 inches (for women) and 40 inches (for men). Calculate your BMI to see if you are within these ranges.

Did you know that excess body fatness causes breast cancer in post-menopausal women, endometrial cancer, colorectal, pancreatic, kidney, and esophageal cancers?

3. Increase your physical activity and reduce your sedentary time.

Adults should participate in at least 2.5 hours per week of moderate-intensity activity; that’s about 30 minutes each day, five days of the week. Plus don’t forget to do muscle-strengthening exercise too. Learn how to increase your physical activity.

Did you know that more physical activity is associated with a LOWER risk of colon cancer, breast cancer in post-menopausal women, and endometrial cancer?

Did you know that a fifth of Americans still smoke, that two-thirds of American adults are overweight or obese, and a fourth of American adults did not participate in any physical activities in the past month?

We know how hard it is to quit smoking, to lose weight, and to increase your physical activity. So think about engaging your family members and friends in your efforts to reduce cancer risk and to promote healthy aging. Everyone wins!

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***The following post was written by Dr. John Fetting at the Johns Hopkins Kimmel Cancer Center.

John Fetting

John Fetting, M.D.

After 30 years as a breast cancer medical oncologist, I have come to believe that we are too focused on trying to cure breast cancer and not focused enough on preventing it.  Until recently, treating breast cancer after it was diagnosed, and may have already spread, has been the best we could do. Despite substantial progress, cure is still uncertain and the road hard.  Along the way there is too much unnecessary trauma for too many.  Now that we have learned so much about the changes in breast cells which lead to cancer, we can prevent the trauma of breast cancer and its treatment.     

Consider how we try to cure breast cancer. We screen for breast cancer with mammography. We hope to diagnose breast cancer when it is non-invasive or, if it is invasive, when it is small so there has been little chance of spread. We remove the cancer surgically and treat the breast with radiation to eradicate the cancer in the breast. Then, if the cancer is invasive, we usually administer drug therapy, i.e. adjuvant therapy, in an attempt to kill any cancer cells which have left the breast.  Adjuvant therapy includes easy-to-take oral agents like tamoxifen, more toxic chemotherapy, and often both. There then follows what we hope will be a life without recurrence.  Have we made progress with this approach? Yes, we have.  Breast cancer mortality is coming down. Can we improve this treatment approach? We can and we will.  But we treat more patients with adjuvant therapy than need it and this treatment approach produces too much collateral damage for too many patients and their families.

How is this? The goal of breast cancer treatment is to prevent the establishment of cancer in other parts of the body, i.e. metastases. It is metastases which cause death. Metastases typically develop some years after the diagnosis and initial treatment of breast cancer. It is very unusual to find overt metastases at the time of initial diagnosis. But in some patients at the time of diagnosis there has been spread of small numbers of cancer cells to other body parts. These cells, called micrometastases, divide again and again over time and give rise to overt metastases in the years after diagnosis. The goal of adjuvant therapy is to kill these cells.  

A severe limitation of our current treatment approach is that we are not able to detect these micrometastases. We do not know which patients have cells elsewhere in their body and which do not. The best we can do is estimate the probability of metastases in the future based on features of the cancer, e.g. lymph node involvement, tumor size, then assume that this same fraction of patients harbor cells. For example, patients who do not have cancer in their underarm, i.e. axillary, lymph nodes have a 20- 30% risk of metastases over 10 years without any adjuvant therapy. This suggests that the same 20-30% of patients have cancer cells in other body parts at the time of diagnosis. It also means that 70-80% of patients with negative nodes will not develop metastases and do not have cells elsewhere at diagnosis. But which patients have cells and which do not? We are not able to distinguish. What do we do? Since a 20-30% risk of metastases is a serious threat, we treat the whole group. We treat the 20-30% who harbor cancer cells and the 70-80% who don’t. And treatment works. Treatment lowers the risk of metastasis in node-negative patients from 20-30% to 10-15% or lower. The problem with this approach is that 70-80% of patients are receiving treatment they don’t need. If treatment had no side effects, this overtreatment would not be so traumatic. But treatment has side effects. Most are short-lived but, rarely, side effects result in long term disability and death. What is most troubling about this approach is that survivors live with uncertainty about whether they will develop metastases. There is a shadow over their lives.

How can we improve?  The best way to prevent the trauma is to detect breast cancer before it can spread…..or before it is even breast cancer. A second way is to sharpen our ability to distinguish cancers which have given rise to micrometstases from those which have not.   At least then we will know who needs treatment and, very importantly, who does not.  We can reassure the many patients who do not have micrometastases, spare them treatment and its side effects, and give them back a future free of threat from breast cancer.    

The path forward is found in our ever-improving understanding of the genetic changes which cause breast cancer and enable it to spread. We are on the cusp of identifying genetic signatures of cells which are on the way to cancer. Once we know these signatures we can intervene with women who are at truly high risk. In much the same way we are poised to identify the genetic signature of cancer cells which have developed the ability to spread. We will be able to distinguish patients whose cancers have this micrometastatic signature from those which do not. We will then be able to focus our adjuvant treatments on those who truly need and spare those who do not.   

DNA is a double-stranded molecule built from just four nucleic acid building blocks:  guanine, cytosine, adenine, and thymine.  We each have an enormous amount of DNA which is packaged into our chromosomes. We have 46 chromosomes and inherit 23 from each of our parents. Our DNA is organized into segments called genes which drive all the important processes in our cells. Mutations in genes are changes in the nucleotides which can change the way our cells work. In some cases mutations can lead to cancer and to cancer which can spread.  Mutations in the nucleotides are not the only way a normal cell can become an invasive cancer. Another way of changing gene function is by chemically modifying the nucleotides so that the gene is no longer able to express itself. These chemical modifications are called epigenetic changes.            

For the 5-10% of breast cancers which are inherited, one mutation in an important gene, e.g. BRCA 1 or 2, is so deleterious that it is capable of producing breast cancer. But most breast cancers do not result from a single mutation inherited at birth.  Most breast cancers develop over a lifetime and result from mutations and epigenetic changes accumulated in many genes over many years.  Here is where things get difficult. Breast cancer cells develop many mutations and epigenetic changes. Some of these mutations and epigenetic changes are necessary for the development of the cancer. Others equip the cell to spread. Many others, however, are random and have nothing to do with cancer. Our task is to identify the changes which result in cancer and cancer which can spread. 

How do we do this?  One of the most important ways is to recruit large numbers of women whom we will follow over long periods of time. These groups are called cohorts and the studies are called cohort studies. For our efforts to distinguish cancers which have spread microscopically from those which have not, we will need large numbers of cancer patients who have been or will be followed for long periods of time. During that time some will have developed metastases; many will have not. We must then try to discover the genetic signature in their breast cancer tissue which identifies those who developed metastases. Once we have defined the genetic signature for metastasis we can focus adjuvant therapy on those with this signature and reassure those patients who do not.

In a very similar way we can identify the genetic signature which predicts the development of breast cancer in the first place. We will need to follow large numbers of women who do not have breast cancer   for long periods of time. Some women in the cohort will develop breast cancer; many will not. We need to sample the breast tissue of all these women periodically during follow-up and profile the genetic and epigenetic changes in the breast tissue. In this way we can identify the changes which precede and are necessary for the development of breast cancer.  Once we have identified these causative genetic and epigenetic changes, we can search for them in the breast tissue of other women in order to identify women at risk. Instead of women having screening mammograms to detect a suspicious mass or telltale calcifications, we may be able to sample breast tissue to identify women who have a high risk profile.

This effort to prevent the threat and trauma produced by breast cancer will require every bit as much of a commitment as the commitment to cure breast cancer.  We will need teams of researchers, an army of women participants, breast and breast cancer tissue, and financial support for the work.  We are ready now as never before to make real strides in preventing this life threatening disease and the trauma associated with our current unfocused efforts to cure it.

John Fetting, M.D.
Associate Director for Clinical Practice
Associate Professor
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

Read a previous post by Dr. Fetting on Preventing Breast Cancer.

***Note: The John Fetting Award in Breast Cancer Prevention has been established to fund the most promising research in breast cancer prevention. Applications will be granted to the most promising work for a two-year period.  The John Fetting Award is led by breast cancer survivor and advocate Leslie Ries.  Her video documentary, Letters to My Daughters, chronicles her inspiring story and mission to help prevent breast cancer.

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Elissa Bantug

Elissa Bantug

Just as most patients have concerns and worries when treatment ends, many children also experience uncertainty and fear when a parent finishes treatment for breast cancer.  Children may be apprehensive and worry about mom’s long-term health.  They may also be sad or resentful at all of the changes at home.  It is very common for everyone in the household to want and expect their lives to return to a sense of normalcy as soon as possible following a family member’s treatment for cancer. 

Francis Lewis RN, MN, PhD, a behavioral scientist from the University of Washington, Seattle, warns that many parents devote too much time trying to teach children about cancer and not enough time listening to their thoughts and feelings: “Don’t be a biology teacher”, she urges gently   It’s important that children are given the opportunity to speak openly about how they are coping with all of the changes since cancer entered the family.  Schedules turned topsy-turvy, mom feeling terrible, others coming to the household to help with the caregiving can all be upsetting and disturb the normal routine. 

As a parent of young children and a cancer survivor, I recommend approaching communication with your children about your disease and recovery with honesty but care: they do not necessarily need to know all the details about your condition or prognosis.  At the same time, you do want to create space for them to ask scary or embarrassing questions, express their own concerns, and try to reduce any anxiety, confusion, anger, or fear they might be feeling.

Below are six tips to help the entire family through this transitional period:

  1. Healing takes time. It’s important to remember that when treatment ends, returning back to routines may take some time.  Recovery does not have a term limit, and the challenges that each patient faces to reacquire their own sense of normalcy (physically and emotionally) are different.  Specifically, this may mean that extra help is still needed with tasks such as childcare, cleaning, and meals in the weeks and months following treatment.
  2. Set clear expectations. Even the most intuitive and well-adjusted kids experience lots of emotions after a family member is treated for cancer.  Parents should talk openly about what can be expected directly following cancer treatment, and allow themselves time to recover.
  3. Find positive (and fun) fill-ins. When mom and dad are forced to miss routine family activities that children have grown accustomed to, this can be frustrating for everyone.  Whenever possible, try to make accommodations for children that they can look forward to--such as time with a visiting relative or a sleepover at a friend’s house. 
  4. Protect family time. Create a “new normal” that incorporates the patient’s energy level at that particular moment.  Fatigue is a very common side-effect after treatment and can vary from day to day.  This may mean that families find new ways to spend time with each other such as “movie night” at home, snuggle time with a book, or board games, instead of going out and doing more strenuous activities.
  5. Include everyone. It’s also important for children of cancer patients to feel included in the care plan.  Find age-appropriate ways for children to help out without over burdening them.  Endowing kids with responsibility not only helps them feel that they are helping mom heal; it also may help distract them from feelings of anger or resentment from disruption of important routines.  For example, families can have “backwards night” where the child reads the bedtime story instead of the parent. 
  6. Speak to a professional. Some children find it helpful to speak to a social worker or psychologist who is familiar with how cancer impacts children.  There are also many age-specific support groups, online websites, books, and camps for children who has a parent diagnosed with cancer.  Ask your cancer center for suggestions.

The good news is there are lots of research studies showing that children are resilient and do very well if they understand what is going on and what they can expect.  Finding age-appropriate explanations as well as ample time to listen may help children adjust to cancer and how it is affecting the entire family. Most importantly, talking openly in an age-appropriate manner and offering kids lots of reassurance is critical for helping the family move beyond cancer.

Cancer Survivorship Resources

Breast Cancer Survivorship Resources

 

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This is the final blog in a three-part series about Genome Sequencing and Predicting Cancer.

Valerie Mehl

Valerie Mehl

Just as every person is genetically unique, so is every cancer. While cancer is not usually written in the DNA we are born with, the story of each individual cancer is contained within the unique and different DNA of the cancer cell—the cancer genome. It reveals the genetic alterations specific to each person’s cancer, and these alterations can be targeted to detect cancers, monitor them, and treat them.

Within a few years, we anticipate that all cancer patients at the Kimmel Cancer Center will have their tumors sequenced to reveal their cancer genomes. It will not only help cancer experts determine which treatments may work for a particular patient, but just as importantly, which ones may not.  This is the focus of personalized cancer medicine, and we have just begun to realize its potential.

A Universal Test

As tumor cells divide, they develop their own blood supply to get the nutrients they need to nourish and grow, and as a result, pieces of the cancer’s DNA get carried into the bloodstream leaving telltale evidence of its existence.  Dr. Bert Vogelstein and team have developed a simple blood test that can detect DNA from cancer cells.  These tests have the potential to detect cancers very early, long before they can be seen on X-rays, CT scans, or through other types of diagnostic methods and long before they cause symptoms. Universal, precise, and specific, this test can pluck one cancer cell from a sea of a half million normal cells.  It can also help doctors determine if a cancer therapy is working by measuring the amount of cancer DNA in the blood.  If a treatment is working, the amount of DNA should decline.  If it goes up, it’s a sign that the treatment may not be killing the cancer.   Rising levels of cancer DNA could also alert doctors that a cancer has come back.

Dr. Vogelstein says such a test, used together with the prevention strategies we already referenced, could eventually make 75 percent of cancers curable. That is huge!

More about cancer genome sequencing and personalized cancer medicine.

Part One of Sequencing Our Genes: Is Cancer Written in our DNA?
Part Two of Sequencing Our Genes: What is Does and Doesn't Do

 

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