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November 29, 2016

An Amazing New Diagnostic Test for CML, and Pharma Generosity!

A New York Times article was published on November 28 about students at Fred Hutchinson Cancer Center in Seattle discovering a new way of diagnosing CML with a spot of blood on a piece of special paper. It's a fascinating tribute to the creativity of young investigators who are inspired by the lack of limits on what can be done to solve a scientific problem with a little ingenuity. Fascinating reading, and another inspirational tidbit for investing in the research work of young investigators. To do more of that, donate to the research programs of the American Cancer Society at Together we can save lives and create jobs.

November 13, 2016

Open Letter to the President-Elect: Save Lives While Creating Jobs

Just posted on Huffington Post is my article on why increasing Federal cancer research funding should be an important priority on the President-Elect's leadership agenda. Take a look, and if you like it, please click "like" and share it on your social media feeds. We can make this a priority if enough of us speak out.

November 4, 2016

Family Cancer Caregivers: “CHIN Up” for Coping

Just posted on Huffington Post is my article on cancer caregiving. May we all learn from each others' experiences.





November 1, 2016

No Surprise: Smoke Still Kills

Despite the number of states that have passed legislation to restrict indoor smoking, the proportion of cancers caused by smoking and second-hand smoke is still stunning. According to the Journal of the AMA (JAMA), quoted in the New York Times on November 1:

"A new study has found that 28.6 percent of all cancer deaths in the United States are attributable to cigarette smoking.

Researchers calculated the number using the relative risks for 12 smoking-related cancers, including acute myeloid leukemia, mouth cancers, and those of the esophagus, stomach and colon.

Smoking is involved in 22.9 percent of cancer deaths in women and 33.7 percent in men. In all, the authors estimate that 167,133 people died of cancers associated with smoking cigarettes in 2014. (This number does not include deaths from many other diseases linked to smoking.)"

So far, over 8 million lives have been saved by these laws, but clearly more work is needed to control tobacco use in ways that will save more lives.



October 21, 2016

Learn the Positions of Presidential Candidates on Cancer Issues

It's up to each of us to make it clear to all political candidates that cancer issues influence our decisions when we cast our votes in November.

Every four years, the American Cancer Society's Cancer Action Network asks each presidential candidate about their positions on government support for cancer early detection and research programs. If you want to know where the presidential candidates stand these issues, go to  Cancer has been under the radar in the campaigns, so hopefully this nonpartisan survey will provide some new information about where the candidates stand on issues like funding for the Moonshot and for cancer research that m eans so much to many of us.

October 18, 2016

FDA is Waking Up to Rare and Pediatric Diseases

The Food and Drug Administration (FDA) has just announced that it has awarded $23 million for 21 grants that will mobilize clinical trials to accelerate treatments for rare diseases, working through the Orphan Products Clinical Trials Grants Program. The program funded 31% of the proposals it received. Its focus was consistent with the National Cancer Moon shot initiative in its intent to accelerate research progress.

"24 percent of the new grant awards fund studies enrolling patients with cancer; 40 percent of these [cancer] studies target devastating forms of brain cancer, one of which recruits children with recurrent or progressive malignant brain tumors. 43 percent of this year’s awards fund studies that enroll pediatric patients as young as newborns. Of these, two focus on research in transplantation and related issues."

These studies range over time periods of 1-4 years and range in type from Phase 1 to Phase 3 clinical trials. For those who have been confronted by rare or pediatric cancers, these studies may offer new potential therapies.



October 13, 2016

Compassionate Use: How to Access Experimental Therapies

"Compassionate Use" is a term that refers to the process for gaining access to investigational drugs that are not yet FDA-approved for full-scale marketing. They may still be in clinical trials or awaiting approval.

A recent survey of 100 pharmaceutical companies identified that only 19% post their compassionate use policies (that is, ways for patients to gain access to experimental drugs). Further information about compassionate use is covered in a STAT article published on October 13. The 21st Century Cures Act which is still awaiting release from both House and Senate committees, includes some provisions to increase transparency around these policies.

Meanwhile, the Cancer Knowledge Network (CKN), an affiliate of Current Oncology magazine, is an electronic information-sharing network based in Canada but addressing North American cancer issues and resources. A recent CKN post, entitled "A Primer on Compassionate Use," addresses how to work with your physician to gain access to such therapies if standard treatments are not working and your oncologist believes you would be a good candidate for such a drug. This is a very solid information source, and the post is worthy of your attention if you or someone you love needs such access.

October 10, 2016

An October Surprise: Crowdsourcing for Metastatic Breast Cancer Research

Who would have guessed that you could advance the effort to solve the dilemmas of metastatic breast cancer by just spitting into a test tube? Well, a new initiative is well on its way that is signing up participants through social media.

When breast cancer metastasizes, it often moves to the liver, lungs, bones, and brain. Other patients who believed that a mastectomy and chemotherapy had beaten their diseases at an early stage may be faced with a recurrence many years later (like my friend, whose lobular breast cancer surprisingly re-appeared in her appendix 28 years after her initial mastectomy and chemo treatment).

While many scientists are researching the metastatic process in an effort to understand genetic mechanisms for cancer's spread that might be interrupted, too many lives are still being lost.  Around 30% of breast cancer patients develop metastatic disease and have an average life expectancy of 3 years. (One friend has fought it for over 13 years, with indescribable suffering and family impact.)

The Metastatic Breast Cancer Project, run by scientists at Harvard and Dana-Farber Cancer Institute and the Massachusetts Institute of Technology’s Broad Institute, is focused on metastatic breast cancer. Funded through crowd-sourcing, has enrolled more than 2,600 patients so far since launching last October. That rate of enrollment is said to be unprecedented.

Most breast cancer patients are treated at centers that don’t do research on tumors, so participating in studies at academic medical centers far from home is cumbersome at best. For patients sick or dying from their disease, the hurdles and expense of such travel can be insurmountable.

This project is different. Patients sign up online, mail in saliva kits for genetic testing, and allow use of their tumor tissue samples and medical records. Researchers use social media to keep them posted about progress, and periodically invite participants to visit the Cambridge, Mass., lab where their specimens are being analyzed.

Another way this project is different is that so many women are treated for breast cancer at centers that are not research institutions and so lack the ability to analyze the genetic composition of breast tissue. This project lets the participant literally spit saliva into a test tube and mail it to the lab, for study. The assortment of patients isn't fully representative of the community of those fighting metastatic breast cancer, largely because it centers on social media that would appeal to the younger audience. Nevertheless, it's yet another tool for helping to solve an important problem that affects women year round and deserves special focus in October.

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October 4, 2016

Precision Medicine Clinical Trial Offers New Hope for Pancreatic Cancer Patients

This morning, STAT (Boston Globe) published information about a new approach by PanCan to clinical trials that--beginning next spring--will offer precision medicine treatments and the opportunity for patients to move among treatments to pancreatic cancer patients. The article is short, so I'm including it in full below. It's a sign of new hope for one of the most lethal cancers:

New precision medicine trial targets pancreatic cancer

Today, the Pancreatic Cancer Action Network is announcing its answer to the chronic problem of how few adult cancer patients — just 3 percent — enroll in clinical trials testing experimental treatments. There’s a key reason for that shortcoming: Most trials only take patients looking for a “first line” therapy, but most patients have already had at least one treatment by the time they consider clinical trials. “There is a mismatch between what patients are looking for and the landscape of clinical trials,” said Lynn Matrisian, chief research officer of the network.

In what the group calls Precision Promise, 12 sites announced this morning will enroll patients in the first large-scale precision medicine trial for pancreatic cancer. Crucially, patients will be able to easily move between treatment options, called sub-studies, under the umbrella of a single Precision Promise trial. Patients will have their tumor molecularly profiled to identify possible therapy targets, be put on the treatment that has the best chance of success, and then can be switched to a different sub-study if that drug doesn’t help or stops working. Patients can start enrolling next spring. In an echo of the data-sharing championed by the White House’s cancer moonshot, all data from the 12 sites will be analyzed together and quickly released to researchers, Matrisian said.


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September 29, 2016

Research to Save Your Own Life

Cancer researchers are amazing individuals, often driven by their own personal stories. I've met many such individuals, and their combination of training, intellect, creativity, and resourcefulness is awesome.

This morning I came across an inspirational story about a cancer researcher who is fighting metastatic colon cancer and is determined to find a way to save his own life. It reflects the passion of many cancer researchers who are inspired by their own or their family members' experiences. They won't take "no" for an answer, and they're helping us all by doing so.

Another companion article talks about the promise of immunotherapy to devise personalized treatments.

If we can press Congress for funding of the Moonshot and increased cancer research budgets within the National Institutes of Health and the National Cancer institute, we may be able to accelerate progress. For more information on how you can raise your own voice in support of increasing Federal cancer research funding, check out the American Cancer Society's Cancer Action Network. Your voice can get heard. To contribute to the Society's research support for early career researchers (whose recipients have won a total of 47 Nobel Prizes for their ground-breaking work, you can write a check to Pay-If Research Fund, ACS New England Division, 30 Speen Street, Framingham, MA  01701.


September 22, 2016

Asbestos is Still an Invisible Killer

I've just posted on Huffington Post an article about asbestos and mesothelioma. I was shocked to learn that we're still using and importing asbestos into this country. If you're concerns about asbestos, check it out!

September 22, 2016

Demand an Experienced Surgical Team

MedPage Today just released a study by the California Health Care Foundation of over 300 California hospitals. The study showed that in 2014 in California, nearly 700 cancer patients had surgery at a hospital that did only one or two surgeries of that type for the entire prior year. Thousands were reported to have had surgery at a hopital that performed no more than five such procedures.

These findings are shocking. Your best strategy, if you're facing cancer surgery, is to seek out an experienced surgical team, no matter what referrals you get from your primary care physician. You're your best advocate; make sure you're getting the best care, and the best care usually comes from the most experienced care providers.


September 20, 2016

Caregiving: A True Heroine

Dana Berson is a tiny and beautiful young woman who truly packs a punch. She's barely 30, and she's a widow.

The love of her life, Jon, was diagnosed with a rare Stage IV rhabdosarcoma in his sinus (usually a pediatric condition) at age 35, after they'd been married only one year. He died one year later, about a year ago.

I met her for the first time at a major cancer advocacy event in Washington where over 600 advocates representing the American Cancer Society's Cancer Action Network conducted 509 personal meetings with legislators on September 13 to ask them

  • to support allocating $680 billion to the cancer Moonshot research initiative and
  • to move both a palliative care bill and a bill to close the Medicare colorectal screening loophole (which pays for a colonoscopy but not for removing polyps that may be discovered) to the floor of the House and Senate for a vote before the end of the year.

That evening, we attended a Lights of Hope ceremony featuring 24,000 luminary bags around the reflecting pool, honoring loved ones who survived or succumbed to cancer. Dana addressed the crowd, describing the palliative care that her husband received during his treatment and expressing her wish that all cancer patients would have such a positive benefit. In spite of the fact that they knew he was dying, they had a fulfilling year filled with trvel and good times with close friends, and he had a good quality of life. The palliative care team was as helpful to her as to him.

You can listen to her inspiring words at; her poise (both in telling her story and in remaining cool while her notes blew off the podium and the CEOS rof both CAN and Merck ran to gather them up for her) was stunning. The video is only 9 minutes long, I think, but it may help you understand the power of advocacy in support of a cause you care about. The whole experience was incredibly moving and reinforced our belief that we can and must stop the carnage from cancer.

Dana Bernson has the grace, poise, and presence of a true hero and is committed to making Jon's legacy matter.



September 16, 2016

Moonshot Blue Ribbon Report and Advocacy Offer Hope

The September 7 Blue Ribbon Panel Report on the Cancer Moonshot offers a blueprint for charting out ways to make a decade's worth of advances in cancer prevention, diagnosis, treatment, and care in five years. In summary, the Recommendations are:

A. Establish a network for direct patient involvement in cancer research and clinical trials.

B. Create a clinical trials network devoted exclusively to immunotherapy.

C. Develop ways to overcome resistance to therapy.

D. Build a national cancer data ecosystem accessible to researchers, doctors, and patients to fuel information sharing and accelerate progress.

E. Intensify research on the major drivers of childhood cancers.

F. Minimize cancer treatment's debilitating side effects.

G. Expand use of proven prevention and early detection strategies.

H. Mine past patient data to predict future patient outcomes (so we can understand genetic and other factors that distinguish which patients will best benefit from clinical trials).

I. Develop a 3D cancer atlas (to help oncologists make more informed treatment decisions for each patient).

J. Develop new cancer technologies that are showing remarkable promise.

Funding for the Moonshot was one need that led over 600 American Cancer Society Cancer Action Network representatives to visit 509 legislators in person on Capitol Hill in Washington on September 13 to ask for $680 billion in cancer research funding to be authorized for the National Cancer Institute in the current round of budget deliberations and for the passage of the 21st Century Cures Act which increases NIH research funding by $2 billion over two years.

More information on how you can help push for that funding can be found at CAN's press release on this year's Lobby Day. Additional requests asked that two other bills--one expanding access to palliative care for relief of pain, nausea, and anxiety (Palliative Care and Hospice Education and Training Act) and the other closing the Medicare loophole that provides coverage for colonoscopies but not for removing polyps found during colonoscopies--receive full House and Senate votes during this session.

September 5, 2016

Why You Want an Expert Radiologist

On September 1, 2016, Medscape, a medical newsletter affiliated with WebMD, cited the results of a research study of breast cancer diagnoses made from mammograms. The study results were reported by senior author Jeremy Wolfe, MD, a radiologist at Harvard Medical School and Brigham and Women's Hospital in Boston, and a team of colleagues.

In the study, 49 radiologists each of whom had 15-20 years of experience reading mannograms (averaging 7,000 scans by each) identified visual indications that allow such experts to identify even small and subtle breast cancers based on viewing mammograpy images for as little as a half second. While the authors would not recommend such fast diagnosis, they were reported that these experts achieved a 75% accuracy rate, which is substantially higher than the 50% that would have been achieved by chance. In addition, they concluded from a smaller study that even when the breast cancer is only visible in one breast, there are tissue changes visible in the other breast that may indicate the presence of "contralateral" breast cancer.

The message is clear for anyone being tested for the presence of breast cancer: Make sure your mammogram is read by an expert!



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August 15, 2016

Why are More Teens "Vaping"?

Kids are using e-cigarettes in increasing numbers. MedPage (staff writer Molly Walker) reported, on August 8, on a study performed about why teens (middle school and high school students) are still attracted to e-cigarette usage, despite its negative health consequences. Key reasons given were low cost and use as a nicotine substitute. Curiosity and the "cool factor" tend to drive them to try vaping, and less than 6% start using e-cigarettes for smoking cessation. In fact, the study reports that 80% of users who said they had started vaping to quit smoking were still smoking traditional cigarettes.

Krysten W. Bold, PhD, of Yale University, in New Haven, Conn., and colleagues, writing in Pediatrics about studies conducted in 2013 and 2014, said that preventing teens from starting e-cigarette usage was the most important factor in controlling their use. E-cigarettes' continued appeal after the first usage tends to correlate, she reported, with good flavors, the ability to use them nearly anywhere, and the principle of hiding their usage from adults. The most significant predictor of continued usage was low cost in comparison to the cost of tobacco products. Longitudinal studies are ongoing.

These factors underlie the priority that the American Cancer Society's Cancer Action Network (CAN) and other anti-smoking organizations are placing on state-level legislation to place the same restrictions on e-cigarette purchase and usage as exist for tobacco products and to raise taxes on both.






August 11, 2016

Researchers are Working on Breath Analysis for Diagnosing Lung Cancer

MedPage Today and the American Society of Clinical Oncology (ASCO) have collaborated on an article describing the potential development of an exhaled breath analysis tool for screening, diagnosis, and monitoring of lung cancer. While the authors admit that the technology is in its infancy, they are using a variety of techniques to test for the presence of several volatile organic compounds in exhaled breath that reveal whether lung cancer is present and whether therapy is working for patients experiencing advanced disease. Initial tests show that such tests on relatively small cohorts of patients are currently 85% as accurate as the current gold standard imaging (Response Evaluation Criteria in Solid Tumors, known as RECIST) that's used for similar purposes today. Eventually, as this technology and a corresponding "electronic nose" evolve, it's hoped that the validity of such technology will be proven for diagnosing and monitoring lung cancer and perhaps even some other cancers as well.

Such out-of-the-box ideas depend on the imagination of talented researchers, a sustained funding stream, the availability of target populations for testing, and of course time. Hopefully all four will be available to advance these ideas toward reality.

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July 14, 2016

Cancer Center Advertising: Not Always in the Patient's Best Interest

An interesting article came out from Indiana University on July 11 (and published in the Journal of the American Medical Association JAMA Internal Medicine) calling attention to the increasing volume of advertising that cancer centers are placing on TV and internet media. Since 2005, the volume of such ads has tripled, reflecting increased competition in many of the nation's urban markets. In fact, the authors calculate that 20 out of 890 cancer centers are responsible for 86% of the ads. Some of these are for very credible institutions, like M.D. Anderson Cancer Center and Dana-Farber Cancer Institute, but others are not. In fact, study coauthor Laura B. Vater of Indiana University School of Medicine in Indianapolis says that "Among the 20 centers with the highest spending in 2014, more than half were not designated by the National Cancer Institute, and three were not accredited by the Commission on Cancer. The public should be aware that cancer centers spending the most on advertising may not necessarily provide the highest quality of cancer care."

Many of the ads are designed to appeal to the emotional needs of people facing advanced cancer diagnoses and looking for hope. They rarely address the costs, benefits, and risks of treatment, and they may often build false hopes. If you're looking for a reputable cancer center and are considering one you saw advertised, you may want to look at Indiana University's study. The National Cancer Institute and Commission on Cancer (a program of the American College of Surgeons, ACoS) represent far more reliable resources.



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July 5, 2016

CRISPR: Gene Editing is Coming of Age

In my own formal reviews of cancer research grant proposals, I’ve heard reference to CRISPR. Time Magazine’s July 4 cover story sets forth a simple and compelling description of it that explains its power in changing the course of cancer and many other life-threatening diseases. Often diseases stem from the fundamental biology of our genetic code. Each time cells divide inside your body, there is the possibility of a mutation or error occurring. The normal body has a mechanism for correcting or eliminating harmful errors, but sometimes that mechanism doesn’t work. That’s where CRISPR comes in.

Very simply, it fits into the trend toward personalized medicine. Once scientists learn what section of a patient’s DNA has a mutation or flaw that is known to cause or allow cancer or another disease to thrive, CRISPR can be programmed to seek it out and make repairs. It uses an enzyme called Cas9 to find and snip out the bad DNA segment. Then some people’s bodies will repair the DNA on their own, or scientists can insert a corrected strip of DNA. 

This technique is influencing biological research, fueling new discoveries of how to turn cancer from an equal opportunity killer to a chronic disease. It’s controversial because it could be used to modify human embryos, so its use is carefully controlled.

What’s important is for people who care about cancer and cancer research to know that these kinds of developments are emerging from medical research that costs a lot and takes enormous time but offers significant hope for controlling conditions like cancer that stem from genomic errors.

June 22, 2016

Call your Senator! 21st Century Cures Bill Needs a Push

When the 21st Century Cures Bill was introduced in Congress last year, it sounded encouraging, even breathtaking for those of us who are eager to see increases in Federal investments in research to support cancer and other life-threatening diseases. It's all about modernizing the government's approach to reviewing and approving medical devices and new pharmaceutical products and increasing research funding by a significant amount.

If a Senate bill doesn't pass by mid-July, when Congress goes on its summer recess, it is unlikely to get attention in the Fall, as the election approaches. That means that 2.5 years of work on both sides of the aisle, in both houses of Congress, will have to begin anew in January. None of us can afford the delay. Both parties need to bend to come up with a bill that will pass the Senate and then be reconciled with the bill that the House passed last summer.

Your senator's contact information is accessible at Just click on "state" and the site will resort the list. Let's not let this opportunity go by without letting the grass roots be counted. Please let your senator know you want action quickly.

June 16, 2016

Multiple Myeloma Patients Face Risk of Second Primary Cancers

Multiple myeloma (MM) is a blood cancer that for some patients can be managed into a chronic disease situation. For example: James, who was originally diagnosed over 23 years ago and has had three bone marrow transplants, is now able--with the support of his activist wife and caregiver--to control his MM like a chronic rather than life-threatening condition.

At the recent annual meeting of ASCO (American Society of Clinical Oncology), a research study was released that has strong scientific support of both good and bad news for MM patients.

The good news is that patients diagnosed with MM are living longer, largely because of dramatic treatment advances. The bad news is that studies of large numbers of patients in both Germany and Sweden have shown a steady rise in the incidence of second primary cancers. The most common such cancer was treatment-related leukemia, for which the risk of developing acute myeloid leukemia (AML), kidney cancer, and nervous system cancers is two- to five-fold higher than that of the general population. Some researchers believe that these second primary cancers may in some way be triggered by original MM treatments.

While research works to understand underlying causes and to improve monitoring of MM patients for such second primary cancers, careful monitoring just makes good sense.

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May 16, 2016

Potential Progress in Treating Glioblastoma: Bravo!

So often, I hear complaints about cancer research about how long it takes, how much it costs, and why can't it come along faster to save more lives. So when potential breakthroughs develop on the cancer treatment front, they deserve all of our attention and support.

60 Minutes last night featured 40 minutes worth of information about use of altered polio virus to treat glioblastoma, a cancer diagnosis that has, so far, represented a rapid death sentence. The early findings of this Phase I trial, which is intended only to determine safe dosage, led to the FDA granting it Breakthrough status so it can be made available to other patients nationwide.

To catch up with what's happening, go to…/60-minutes-fda-breakthrough-statu…/. It's guaranteed to stimulate hope. Not without bumps along the way, but some miraculous progress, and the FDA wanting to accelerate its availability. Bravo!

May 3, 2016

"Cancer Moonshot" Update: The Space Analogy Works

An interesting article appeared in the WBUR public radio newsletter Cognoscenti on April 29 that helps in explaining why the idea of the "moonshot" was a useful analogy for Joe Biden's cancer initiative, and why we're not wasting our time in hoping for cancer research breakthroughs to emerge.

For those of us old enough to remember the early days of the space program, there were lots of false starts. It took years to develop predictable technologies that could be leveraged successfully from one kind of activity to another. For space research, it was sending a man to the moon, the space station, and so many more developments that demonstrated success. The article's author Fred Ledley, M.D., contends that the space program's eventual success depended on the maturing of technologies (building blocks) that would allow breakthroughs to happen.

Dr. Ledley, who directs the Bentley College Center for Integration of Science and Industry (Waltham, MA) contends that cancer research may well be following a similar model:

Our research suggests that cancer research may now be at a similar stage. Analytical models suggest that many of the discoveries and technologies that are essential components of cancer therapies have now matured to the point that they may predictably generate successful products. In fact, over the past several decades, there have been significantly more new therapies approved, and scientists are optimistic about applying the insights of molecular biology and genomics to achieve cures.

Cancer science may, in fact, be like rocket science emerging from an era of frequent failure. A “moonshot” for cancer could actually work.

To succeed, however, we must recognize that the success of America’s lunar program was built on a foundation of maturing technologies and investments that hastened their development, not new scientific discoveries that would take decades to mature. With increased investment and strategic management, we have a shot at a cure for cancer. This time it will be different.

As someone who is actively engaged in reviewing cancer research grant proposals for the American Cancer Society at both regional and national levels, and as a passionate advocate for increased Federal and private cancer research funding, I hope that Dr. Ledley is right. It's not enough for the cancer survival rate to sneak slowly upward; we need breakthroughs that will address the most lethal cancers, prevent metastasis, and change the trajectory of the disease. It's only through intensive funding to leverage our new learnings about the fundamental mechanisms that trigger cancer cell growth, the process of metastasis, and ways of triggering the human immune system to fight these foreign invaders that we'll be able to accelerate the number of breakthroughs we'll see in our lifetimes.


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May 3, 2016

Relapse . . . after 27 Years?

We want to believe it's over, once we've gone through cancer treatments. One and done is what we all want, especially as time passes.

For those of us who are lucky, when treatment for our tiny or non-invasive run-of-the-mill breast cancer is over, we go back for our regular annual check-ups, with cancer fading more and more into our memories. For most of us, our minds save our sanity by pushing our treatment experiences farther back in our consciousness. For those  who had more difficult treatment experiences (mastectomies, chemotherapy, prolonged radiation, and so on) with more advanced or challenging types of cancer, it takes longer, if it happens at all.

But there's nothing like the shock of being told it's back--not just that you have cancer again, but that after many many years, the same cancer that was treated by surgery and chemo so long ago, is back. For L, who had had a single mastectomy and chemo 27 years ago, it was stunning to learn that her recently removed appendix was lined with lobular breast cancer cells. She's now having a full body PET scan to see if it has spread farther, and she's meeting with experts at leading cancer institutions to find the right oncologist to take on her case.

To make it even harder, her original hospital no longer has the records (27 years ago was before records were digitized and before patients were routinely given copies of their paper records). Fortunately, after she relocated to this area 17 years ago, the oncologist she saw for her annual  checkups (but has since moved out of the area) did have a record that her cancer had been invasive and lobular. Fortunately, too, the records were left behind when he changed institutions, and she found a compassionate medical records clerk who helped her get copies of those records, saying "If it was me, I'd want someone like me to help find them."

So now L has been again dropped into cancer Hell. Her full-body PET scan will help define what treatments will be most appropriate. Her consults with three oncologists at two leading cancer centers will help her select which oncologist to trust with her life. And her family--still somewhat in shock--are clustered around her, taking detailed notes at medical appointments and doing lots of the research that she will need to choose the best oncologist and course of treatment.

I share this story with my readers for its lessons:

  • Always get copies of your medical records, even though they're digitized now. Get everything you can get your hands on. It's your body, and they're your records. That includes imaging scans, on CDs, so you can pass them along if you ever need them or just fill a file cabinet if you don't. Make sure you know where your pathology slides will be kept, and for how long. L has been working to get her records and is having good luck, but it's meant a lot of stress and running around.
  • Keep doing your routine annual cancer check-ups, like L did, and follow her example: when something is clearly wrong in another part of your body, don't hesitate to pursue a diagnosis with your PCP. An initial CT scan told them she needed surgery.
  • When told there might be something going on in her appendix, L and her PCP made a good decision. They had the choice of having a general surgeon remove the appendix or going with a colorectal cancer surgeon, in case he saw something else of concern in the neighborhood. Wise choice.
  • Don't assume that it's good news if there's no tumor in the tissue sample that's sent to pathology after a new follow-up or exploratory surgery. Her cancer was in the lining of the appendix, and was not a tumor. Some cancers don't create tumors and so are inoperable. Fortunately the appendix could come out intact, but only the PET scan will tell if it's gone elsewhere beyond the appendix. The problem is that some metastases are mucinous (like fluid). Others, like metastatic lobular breast cancer, may be more like strings or spider webs. For those, chemo may be required because you just can't get it all out through surgery.


Above all, advocate for yourself. Take a deep breath. In spite of your emotional state, you must take a minute to think. Whom do I know who can help? What do I need to do to pin down my options? Chart out a course of action. Once you have things to do and appointments on the calendar, you'll start regaining your sense of control over the situation and your hope for the future.

Finally, don't hesitate to mobilize anyone you know who can pull a string on your behalf to get you an earlier appointment with the right specialists, and don't hesitate to let your friends and family help. Now's the time to temper your past inclinations to care for others. It's time to let others in who want to help care for you.

Twenty seven years. It just takes your breath away, and it reminds us all what an insidious disease we're fighting.


April 7, 2016

Cancer Fund-Raising: Beware of These Scams!

Yes, it's sad but true that there are unscrupulous people out there who would capitalize on cancer patients' suffering as a vehicle to raise money that goes to fill the perpetrators' pockets and not to serve the causes of cancer research or patient care. This article from CNN highlights four of them, together with the scope of their deceipt and the way they did it. Do give to cancer research and patient / caregiver support charities, for sure, but make certain that you steer clear of these bad apples. If you have any doubts about the legitimacy of a particular organization, you can look them up on Guidestar or Charity Navigator to make sure they're among the good guys.

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