Guest Blog Post by a Grateful Patient

My good friend, Lee Jay Berman, invited me to the wine-tasting dinner, which I was unable to attend, but he had explained the foundation’s mission.  When I received my diagnosis not long afterwards, he was one of the first people I called.  He alerted me to the T.J. Martell Foundation’s Patient Services program, or as he put it, “My friend Laura is CEO at T.J. Martell, and when she calls the administrator of a facility, they drop everything to take her call. She can really open doors. It has made a difference for other friends of mine. She sees it as another kind of mission for the foundation.”

My diagnosis was a rare but aggressive one, cholangiocarcinoma—cancer of the bile ducts leading out of the liver.  Two experienced surgeons in the field told me point blank that I wasn’t a candidate for surgery, which is the only thing that holds out hope of survival past a year or two.  Palliative care (chemo and radiation) was my only option.

I had been in touch with Memorial Sloan Kettering about getting a second (actually, third) opinion, specifically with one of their oncologists, since I was satisfied that surgery wasn’t possible.  After Laura’s call, I quickly got an appointment.  To my surprise, it was with a surgeon, one of the most distinguished surgeons for GI cancers in the world.  He told me that while I should start chemotherapy, I should not rule out the possibility of surgery later on.  I had an unusually good response to the chemo, and six months later he performed a resection operation.  Tests showed zero cancer at the margins, which holds out the possibility that I have been cured.

Perhaps I might have gotten that appointment without the referral.  But perhaps not.  MSK‘s policy was not to see someone like me at all once chemotherapy began, which was imminent.  The appointment was literally on three hours’ notice.  Without that appointment, I would have had chemo and radiation—and likely never have known surgery was an option.

How did the referral help me?  Possibly the difference between life or death.  At a minimum, as things turned out, it likely added years to my life.

There are many foundations fighting the battle against cancer.  T.J. Martell is focused on funding innovative research at top institutions pushing for real breakthroughs.  That’s the melody.  The human side of the foundation adds a harmony of personal kindness, reaching out to those stricken by cancer to make breakthroughs at an individual level possible.  Of that, I’m living proof.

Editor’s note: This patient has asked to remain anonymous, and we of course respect his wishes.

Guest Blog Post: Update from our IronMan!

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Our friend Jan Swenson, a courageous cancer survivor, is training for this year’s IronMan and donating all proceeds to our foundation. Read on for an exciting update from Jan! 

Wooo-Hoo!! I just received the 6-month “All Clear!” from my Oncologist. It made me rethink where I am in my Journey to Ironman in July and the frustration I feel that I am not faster/ stronger at this point.

20150703_114059It was just about 6 months ago that I had chemicals designed to kill me coursing through by body, the steroids and anti-nausea medications that all have side effects. From the hair loss to weight gain, this was a very stressful time for my body.

 

 

But 6 months out from this and where am I?

12509180_10207967913811985_8773905894292326708_nI am a Disney Dopey Challenge finisher (48.6 miles of running over 4 days).

I am training 10-12 hours a week on top of maintaining my work schedule.

I am eating healthier than I ever have.

It is easy to let the frustrations of the moment cloud your mind with fear and impatience for a body that just went through chemotherapy. I have an ambitious personality and I have set some goals that I would like to hit for July. Finishing Ironman (hopefully faster than I did in 2013, but would be satisfied to finish strong) and raising at least $5,000 for The TJ Martell Foundation (if you don’t know who they are check them out, they are moving some big mountains in researching treatments and cures).

I posted one time on this and with your help we raised about $2,500, and currently at $2,715!!! I want to thank all of the people who have generously donated so far and look forward to thanking everyone who will follow this link to donate. No amount is to big or small. And everything helps.https://donate.tjmartell.org/fundraise?fcid=570733

Guest Blog Post: Important Advice if You’re Considering Mastectomy

Ingrid Meszoely, M.D. is Associate Professor of Surgical Oncology and Clinical Director, Vanderbilt Breast Center at Vanderbilt-Ingram Cancer Center.

Following the completion of several large studies in the late 1980s and early 1990s involving thousands of women, it was clearly determined that the number of years a woman lived following breast cancer surgery was exactly the same whether she underwent mastectomy (removing the whole breast) or lumpectomy (just removing the part  of the breast with the cancer). This was a big breakthrough for breast cancer treatment with the realization that more surgery doesn’t result in better outcomes.  Initially this resulted in a trend of women choosing lumpectomy over mastectomy in order to preserve their breasts.

However in recent years, as Dr. Kummerow and many other researchers have found, there is a nationwide trend in choosing mastectomy over lumpectomy despite there being no clear survival advantage.  In addition, many women choose to undergo mastectomy of the non -affected breast despite the fact that the risk of developing cancer in this breast is very low and that it does not have any effect on survival from their current breast cancer.

As a breast cancer surgeon, I see this same phenomenon in my own practice.  The choice of mastectomy on one or both sides is often driven by multiple factors including the fear of cancer coming back or a new cancer on the other side and the wish to do everything one can to prevent this.  This often provides some sense of control and peace of mind in the setting of an overwhelming diagnosis.

When a woman is diagnosed with early breast cancer and given the choice of mastectomy or lumpectomy because she is a candidate for either procedure, the options should be considered carefully.

It should be clearly recognized that mastectomy does not provide 100 percent protection from cancers coming back. Cancers often come back at other sites outside of the breast before they return in the area of the removed breast tissue.  Because mammograms or other imaging studies are not routinely used after mastectomy, the finding of recurrences along the chest depends on continued routine self -exam and clinical exam by their doctor when the tumor is large enough to feel as opposed to being detected on mammogram when it is very small.

Mastectomy is also associated with increased complications compared to lumpectomy and these are often related to the reconstruction, which can be discouraging.  It is even more devastating when there are complications related to the unaffected breast when women choose mastectomies on both sides.

Lymph node surgery often is performed in the setting of mastectomy.  If just a single lymph node is found to be involved with breast cancer, removal of additional lymph nodes is recommended which can result in added complications. However if a lumpectomy is chosen, generally 3 or more lymph nodes need to be involved with cancer before more lymph nodes are removed.

When a woman presents with newly diagnosed early breast cancer and is put in the position of making a decision between lumpectomy and mastectomy, a thoughtful discussion should be initiated with her treating physicians.  Ultimately, the decision is very personal and she should choose the procedure that suits her lifestyle and provides her with the greatest sense of wellbeing.

 

PALB2 Gene Mutation Affects Breast Cancer Risk

Having a family history of breast cancer nearly doubles a woman’s risk of developing the disease and genetic factors are known to play a major role in the origin of breast cancer.

The BRCA1 and BRCA2 genes were identified as major breast cancer susceptibility genes nearly 30 years ago and it is estimated that these gene mutations explain about 50 percent of familial breast cancer cases.  BRCA1 and BRCA2 mutation tests have been widely used in high risk women (e.g., women with a strong family history of breast cancer) for risk assessment and management which may include prophylactic surgical and drug therapy intervention.

However, a significant fraction of familial breast cancer cases remain unexplained. A recent study identified the PALB2 gene as another major breast cancer predisposition gene. The PALB2 (Partner and localizer of BRCA2) gene produces a protein that is crucial for key BRCA2 functions. Mutation carriers of this gene were found to have a 35 percent risk of developing breast cancer by the age of 70, triple the risk seen in the general population.  For breast cancer diagnosed before age 40, having PALB2 mutations was related to an 8 to 9-fold increased risk.  It is estimated the PALB2 mutations explain about 2 to 3 percent of familial breast cancer risk. This study expanded our knowledge of genetic contributions to the familial profile of breast cancer.

Currently, the benefit and risk of deploying preemptive measures like surgery or drug therapy based on PALB2 mutation status is unknown. While the utility of applying PALB2 mutation information for risk management of high risk populations needs to be further investigated, individuals with known mutations of this gene are encouraged to seek genetic counseling because PALB2 mutations are also known to increase the risk of pancreatic cancer and may increase the risk of ovarian cancers. Mutations in PALB2 are very rare in the general population. Thus, screening for PALB2 in the general population appears to be unnecessary.

Xiao Ou Shu, M.D., Ph.D., MPH
Ingram Professor of Cancer Research
Vanderbilt-Ingram Cancer Center

Today is National Cancer Prevention Day!

Everyday Ways to Prevent Cancer

By Leslie Vandever

February is National and World Cancer Month—observations meant to increase public awareness of cancer, cancer prevention, and cancer research. And Tuesday, Feb. 4 is National Cancer Prevention Day.

Even today, with the incredible scientific and medical advances that have taken place over the last hundred years, cancer remains one of the most frightening—and deadly—diseases we face. Fortunately, we’ve gotten much better at treating and even curing some types of cancer, some of the time. Unfortunately, a definitive cure for all cancers remains beyond our reach.

What is cancer?

Simply, “cancer” is the word for a group of diseases in which the cells—the body’s basic unit of life—develop abnormally and do not die when they should because of a mutation in their DNA. Instead, out of control, these “malignant” cells divide and spread (metastasize) to other parts of the body through the bloodstream or lymph system.

Sometimes mutated cells may form a mass of tissue called a tumor. It’s considered “benign” if it doesn’t spread to other parts of the body, can be removed, and doesn’t come back.

There are more than 100 different types of cancer. In many cases, what starts, or triggers, cells to mutate abnormally and spread is unknown. But scientists have been able to pinpoint some possible triggers for some forms of malignant cancer—and by avoiding or controlling those triggers, you can reduce your odds of contracting the disease.

What steps can you take toward cancer prevention?

  •  Don’t use tobacco. If you do, stop. Smoking has been linked to cancers of the lung, bladder and kidneys. Chewing tobacco has been linked to cancer of the oral cavity and pancreas.
  • Eat healthy. Choose a diet rich in plant-based foods like vegetables, fruit, beans, legumes and whole grains. Limit fat, particularly fat from animal sources. Avoid sugar. Foods that are higher in fat and sugar (and calories) contribute to obesity, which can cause cancer.
  • Avoid becoming overweight or obese. Maintaining a healthy weight for your age, height and build might help to prevent cancer. Obesity has been linked to cancer of the breast, prostate, lung, colon and kidney.
  • Exercise. Regular exercise helps to maintain overall health, helps to control your weight and might protect against breast and colon cancer.
  • Protect yourself from the sun. Many types of skin cancer are linked to the harmful ultraviolet rays in the sun. Use sunscreen liberally and wear tightly woven, loose-fitting clothes in bright or dark colors to protect exposed skin. Try to stay out of the sun between 10 a.m. and 4 p.m. And avoid tanning beds and sunlamps—they’re just as damaging as natural sunlight.
  • Cancer screening. Mammograms, PAP smears, breast and skin exams, and colorectal screening can catch precancerous conditions early. By finding abnormal cells and treating or removing them, some cancers can be prevented. They include cervical cancer, breast cancer and some skin cancers.
  • Chemoprevention.  The vaccine against the human papilloma virus (HPV) and the hepatitis B vaccine can prevent certain types of cancer. There are also medications can treat some pre-cancerous conditions and keep them from developing into a malignant form.

Other steps you can take include limiting the amount of alcohol you drink, and avoiding risky behavior. HPV and HIV infections, which can make you more susceptible to liver, cervical and other cancers, can be prevented by never sharing needles and practicing safe sex: limiting the number of sexual partners you have, and using condoms. Finally, visit your doctor at least once a year for preventive screening and an overall health checkup.

For more information about cancer and other health issues, click here.

Leslie Vandever is a professional journalist and freelance writer. Under the pen-name “Wren,” she also writes a blog about living well with rheumatoid arthritis called RheumaBlog (www.rheumablog.wordpress.com). In her spare time, Vandever enjoys cooking, reading and working on the Great American Novel.

References:

  •  What is Cancer? (2013, Feb. 8) National Cancer Institute. National Institutes of Health. Retrieved on January 26, 2014 from http://www.cancer.gov/

In honor of National Cancer Prevention Day, please consider making a donation to the T.J. Martell Foundation by clicking here. The Foundation funds cutting-edge research that will lead to clinical trials and drug discoveries that will help save lives!

 

Guest Blog Post: What Causes Breast Cancer?

Dr. James Holland is the Distinguished Professor of Neoplastic Diseases at the Icahn School of Medicine at Mount Sinai and his leadership is instrumental in the development of the T.J. Martell Memorial Laboratories in the Icahn School of Medicine at Mount Sinai.

Although there has been wonderful progress in diagnosing breast cancer in the last 35 years using physical exam, sonography, mammography and magnetic resonance imaging, and in surgery, substituting lumpectomy for radical mastectomy, and sentinel node biopsy for wide dissection, and in radiation therapy, hormone therapy, chemotherapy and immunotherapy, so that the majority of women are now cured of this common disease,  little research has been done on finding one or more causes that makes this disease so common.

Recognized inherited genetic factors account for less than 10% of cases. The T.J. Martell Memorial Laboratories in the Icahn School of Medicine at Mount Sinai has a deep program exploring a viral cause for human breast cancer. Breast cancer in mice is known to be caused by a mammary tumor virus (MMTV).  We have found a virus 90 to 95% identical to MMTV which we have named HMTV, in 40% of the breast cancers in American women.  We can infect other cells with it, indicating HMTV is alive and active.  It is not in the normal tissues of the patient, thus excluding genetic inheritance, but rather is acquired after birth.  The distribution of the virus in breast cancers around the world (high in the USA, low in China for example) parallels the content of MMTV in the different species of mice which varies widely.

The work will continue until we provide rock solid proof that HMTV causes human breast cancer, which then opens up new means of prevention and therapy.  And none of this would have happened without Martell Foundation support.

Guest Blog Post: Breast Cancer Research is Saving Lives

Dr. Jennifer Pietenpol, Director of the Vanderbilt-Ingram Cancer Center, B.F. Byrd Jr. Professor of Oncology and Professor of Biochemistry and Otolaryngology (with notebook), meets with breast cancer advocates.

Dr. Jennifer Pietenpol is Director of the Vanderbilt-Ingram Cancer Center, B.F. Byrd Jr. Professor of Oncology and Professor of Biochemistry and Otolaryngology.

During October, the nation seems to be awash in the color pink as individuals, sports figures and even businesses recognize Breast Cancer Awareness Month. This colorful display is a visual reminder that more than 230,000 women will be diagnosed with breast cancer this year and nearly 40,000 will die from the disease. We all have a stake in trying to save the lives of these family members, friends and neighbors.

The encouraging news is that breast cancer death rates in the U.S. are actually falling, thanks to better diagnostic tools and improved cancer therapies. Vanderbilt-Ingram Cancer Center in Nashville has been one of the leaders in the effort to understand what is happening at the molecular level in breast cancer and to test new therapies to address those molecular markers.

In the past two years, investigators in my laboratory have discovered at least six subtypes of triple negative breast cancer – a particularly aggressive form of the disease for which there are few treatments. We are now initiating clinical trials to target these subtypes with specific therapies. A clinical trial for the luminal androgen receptor subtype will combine anti-androgen therapy with a drug targeting the PI3K pathway, which is often altered in this subtype. Another clinical trial will use chemotherapy with a PI3K inhibitor to target the other subtypes of triple negative breast cancer.

Using tumor biopsies that are embedded into the trials, we will also gain information about why certain tumors respond to these treatments while others don’t. In other breast cancer studies, we have tested new therapies that can shrink breast tumors before surgery, giving some women the option for less aggressive surgery and a better chance for a cure.

Many of these research initiatives at Vanderbilt-Ingram are made possible through the support of the T.J. Martell Foundation, which has been a longtime partner of the Cancer Center. In 1993, the Martell Foundation helped launch the Frances Williams Preston Laboratories in support of cancer research at Vanderbilt. Today, under the leadership of Harold (Hal) Moses, M.D., director emeritus of Vanderbilt-Ingram, dozens of scientists in the Preston Laboratories are exploring the mysteries behind breast cancer and working to uncover clues that will lead to better treatments.

In an era of dwindling federal funding for research, financial support from organizations like the T.J. Martell Foundation is crucial for the future of our research mission. We are grateful for the grassroots efforts of Martell-supported initiatives like Team Martina, an organization of singer Martina McBride’s fans who raise funds in support of breast cancer awareness and research. Martina McBride and Team Martina recently donated more than $40,000 to Vanderbilt-Ingram to help us expand our leading-edge cancer research efforts.

Guest Blog Post: Mammography – A Limited Tool for Early Detection of Breast Cancer

Dr. Margaret Cuomo is the author of “A World Without Cancer: The Making of a New Cure and the Real Promise of Prevention.”

Margaret I. Cuomo, M.D. is a Board-certified radiologist; Board member, Lesscancer; Author, ‘A World Without Cancer;’ and T.J. Martell Foundation Women of Influence honoree. She wrote the following post on this week’s mammography report for HuffingtonPost.com, which we excerpt below:

Mammography has been the gold standard for early detection of breast cancer since the 1970s but has been surrounded by controversy more recently. In 2009, the United States Preventive Services Task Force (USPSTF) recommended that routine screening mammography begin at age 50, and that screening should be optional for younger women. Mammograms performed every two years, rather than annually, was advised for women of average risk of breast cancer.

The American Cancer Society, American College of Radiology, and others opposed the USPTF recommendations and supported annual mammograms and also advised annual mammography for women younger than 50.

This week, a study in Cancer by Blake Cady, M.D., of Massachusetts General Hospital in Boston, and co-authors reported that annual mammography has a definite survival benefit for young and older women:

Regular screening increases the likelihood of detecting nonpalpable cancers (cancers that cannot be detected by physical examination), and annual screening further increases the likelihood relative to biennial screening.

These authors also analyzed breast cancer and non-breast cancer deaths by age and discovered that half of all breast cancer deaths occurred in women younger than age 50, and 69 percent before age 60.

What Dr. Cady and his colleagues are not examining is the effect on cancer risk due to the radiation exposure of annual mammograms beginning at a young age.

Other scientific studies have reported on the radiation risk from screening mammography in women younger than age 50, especially among women with a family history of breast cancer, or a genetic predisposition. [1] While these studies have admitted a risk of cancer due to annual mammograms, the public’s perception is that the risk is small compared with the benefit in saving women’s lives. [2] [3]

We can all agree that mammography is a limited screening tool at best. It is time to engage in an intensive, focused research effort to discover the specific biomarkers that will assess a women’s breast cancer risk and identify those patients most likely to benefit from a specific molecularly-targeted therapy. A non-invasive test that is sensitive and specific for the early detection of breast cancer is a goal worthy of our investment and dedication.

Mammography will remain a controversial issue because it is an imperfect tool involving ionizing radiation. Let’s move beyond this method that is decades old and move forward with an early detection method for breast cancer that will not increase a women’s cancer risk at all. The National Cancer Institute, American Cancer Society and research institutions across the U.S. could join in a collaborative effort to achieve this goal so that our daughters and granddaughters will have a safer, more intelligent approach to breast cancer screening.

For the full article, please click here.

The Problem with Excuses: Early Cancer Detection in Young Adults

Guest Blog Post from 15-40 Connection

In the realm of cancer research, preventative measures like early detection are coming into the spotlight lately. After Angelina Jolie’s high-profile case, more people are aware that genetic testing even exists. It’s a hot topic on everyone’s mind. Early detection can mean increased chances of survival, but it also likely means fewer rounds of chemotherapy, surgeries, and radiation. Especially if the cancer is caught early enough so that it has not spread, it drastically decreases the complexity of treatment and the painful side effects.

So, why isn’t it working for everyone? Rates of survival in the 15-40 year old age group have not increased since 1975. Rates of survival of pediatric cancer have improved, as well as cancer found in those over 40, so why are young adults left out?

There isn’t an easy answer. This age group is particularly hard to diagnose, because screenings like colonoscopies and mammograms aren’t usually required until later in life.  While many are aware that early detection works, far fewer know what to look for or how to look. Even when they are aware, the environmental factors mean that this age group often overlooks their own health problems.

15-40 year olds are chronically busy. This age group encompasses high school-ers, college students, young professionals, and young parents. There are a lot of transitions and a lot of new adjustments, and taking care of your health can take a back seat. When making an annual physical appointment is competing with your children, your schoolwork or your full-time job, it’s very easy to leave at the bottom of the list.

With all these responsibilities, 15-40 year olds are less likely to put themselves and their health needs first, and more likely to ignore persistent health problems, or write them off as due to stress or “just getting older.”

The busy schedule paired with a feeling of invincibility is particularly dangerous. Feeling invincible, and that ‘cancer doesn’t happen to someone my age,’ can be self-perceived, but it can also be inferred by the doctors. Doctors are less likely to expect that a persistent health problem could be due to cancer, and frequently treat symptoms individually without discovering the real cause: cancer.

To make use of the power of early detection, we need to empower 15-40 year olds to take control of and responsibility for their health. Here are a few resources:

Stress the importance of self-exams and teach how to do them:

Breast self-exam

Testicular self-exam

Teach 15-40 year-olds how to advocate for their health:

How to talk to your doctor

When to trust your instincts

If we harness the power of early detection, the 15-40 year old age group can see similar improvements in cancer survival rates as the pediatric and adult cancers. We can change this. See www.15-40.org for more information.

Dr. Sandeep Kapoor – Skin Cancer Prevention and Awareness at Bonnaroo Music Festival

Dr. Sandeep Kapoor with the T.J. Martell Foundation at Bonnaroo

I would like to extend a warm thank you to Laura Heatherly of the T.J. Martell Foundation for asking me to conduct a skin cancer awareness program at the Bonnaroo Music Festival in Manchester,Tennessee.

As a primary care physician, I truly enjoy reaching out to the community to educate the public on the importance of cancer prevention and early detection. We had an enthusiastic audience that spanned many age groups who were interested in learning how to protect themselves from the dangers of the sun and how to check themselves for early signs of skin cancer.

On behalf of he board of directors of the Ronnie James Dio Stand Up and Shout Cancer Fund, we appreciate our collaboration with the T.J. Martell Foundation and plan to be present at many more outdoor music festivals to spread the word about skin cancer prevention.

Cancer prevention and early detection saves lives!

Check Yourself for Cancer Today!

Sandeep Kapoor, MD

Co-Founder/Medical Director

The Ronnie James Dio Stand Up And Shout Cancer Fund

www.diocancerfund.org