Sorting out the low-risk cancers


Debu Tripathy blog image

There is so much attention on the aggressiveness and dangers of cancer – and rightly so, as it is a major cause of death in our society. However, there is a flip side to this story – a diverse group of low-risk cancers, or "precancers" that could in some cases even be better left undiagnosed, as the treatment may actually cause more harm than good. These types of malignancies include diagnoses like "in situ" or "non-invasive" cancers that are commonly seen in the breast, prostate and cervix, or "borderline ovarian tumors."

In many cases, they do not have the potential to invade other tissue or to spread, so they don't carry the same risks of illness and death. Some have even advocated that we rename these diseases without using the words "carcinoma" or "cancer," which bring out fear and anxiety and also motivate patients, as well as clinicians, to carry out more aggressive treatments.

However, these low-risk cancers can sometimes co-exist with more dangerous invasive (or infiltrating) cancers, and as they are typically treated with surgical removal, there can still be recurrences over the course of time, which can be either in situ or invasive. They rarely can result in death. However, these bad outcomes are unusual enough that when one looks at large population statistics for many of the in situ types of cancer, survival rates are indistinguishable from the normal population.

So, what are medical experts and even some patient advocates now saying?

The messages are mixed as there is controversy that balances the small risks of these cancers against side effects of diagnosis and treatment. For one, there are calls for modifying our cancer screening procedures – this is particularly true for breast and prostate cancer, where "overtreatment" of harmless cancers carry significant short- and long-term side effects. We also need to develop better imaging and tissue-based tests to identify the rare aggressive cancer hiding among a sea of low-risk cases. Finally, we need to make sure that physicians and the public are up to date on the latest recommendations and developments in this area, as it will continue to evolve.


Older is better


Jennifer Nassar

When Andrew Tomasello, of Little Silver, N.J. was chosen as an audience member to step on stage with Jimmy Fallon on "Late Night with Jimmy Fallon" in 2010, it was "one of the best days" of his life. Key word: 'was.'

"I can't say that anymore because I beat cancer," he tells me.

In 2012, Andrew, then 20, was living the life of an aspiring politician and broadcast journalist in Washington, D.C. He was elected chairman of the College Republicans at The Catholic University of America, interned at N.J. Gov. Chris Christie's office and had a job lined up at a TV station. Everything was going great until a tumor was diagnosed on his pelvis. It was deemed non-malignant, so he had non-surgical treatment to remove the tumor, and went on with his life.

When the tumor reccurred a year later, it was malignant; and Andrew received a diagnosis of osteosarcoma. That May, Andrew underwent a 10-hour surgery in which two-thirds of his pelvis was removed. "A significant part of the surgery was spent separating the tumor from his nerves so that his leg would not be paralyzed and would function, as well as his bladder and bowel," says Andrew's Orthopedic Surgical Oncologist James Wittig, chief of Orthopedic Oncology at John Theurer Cancer Center in Hackensack, N.J.

Thankfully, Andrew didn't have to undergo amputation. "In Andrew's situation, I was able to save the important nerves, blood vessels and muscles necessary for saving the leg," Wittig says. Andrew had to start treatment almost immediately following the surgery. On July 1, 2013, he had the first of his 19 rounds of chemo. His treatment also included 35 rounds of radiation. He spent the "Big 21" in the hospital due to complications from treatment. "It's ironic because I always knew I would spend my 21st birthday in the hospital sick, but I never thought it would be for chemo," he says.

Andrew spent a couple nights in the hospital for each chemotherapy treatment. During that time, he developed close friendships with his healthcare team, especially his nurses. He often posted photos on his Facebook and Instagram account of times with them.

Andrew Tomasello

Andrew Tomasello

While Andrew maintained a very optimistic spirit, he had his down times; especially in the beginning. "Yeah, I had cancer, it sucked," he says. He was saddened by having to put his life on hold; his job, school and independence--a common issue young adults with cancer face during treatment. However, the feeling was short lived. "It is hard to see anybody diagnosed with a cancer, let alone such a young man just starting college and getting his life underway," Wittig says. "He approached the entire situation very bravely."

Andrew was officially deemed in remission on April 17. "I'm 100 percent cancer–free, and it's all because of Dr. Wittig," he says. "He's the greatest man on the face of the earth."

It was just as beneficial for Wittig. "Personally, I gain such an incredible amount of fulfillment from taking care of such a brave young person and being presented with one of the largest most challenging limb-sparing surgeries and having a perfect outcome in an immensely positive and grateful patient. I will have the delight to watch Andrew finish college, lead a productive life and grow old with a great quality of life," he says.

Dr. Wittig and Andrew Tomasello

On July 29, Andrew was able to have a "cancer-free" birthday. He was thrilled not to just make up for his 21st, but to be able to celebrate more birthdays. He was set to make "22 the new 21" with his hashtag #Andrews22. He admits that he, at first, was in denial about getting older, but now he embraces it.

Can cancer be glamorized?

When Andrew and I discussed the movie "The Fault in Our Stars" (TFIOS) and he says that while it wasn't the perfect portrayal of cancer, it's very eye-opening.

He says the problem with cancer portrayal in today's storytelling is "throwing cancer into the story just for the sake of having cancer," especially with love stories. That can be misleading, he says. TFIOS "wasn't a love story that someone threw in cancer." It's a cancer story from the beginning.

Wittig says that cancer in storytelling gives young patients "courage and positivity." He says it "brings a public awareness about sarcomas and childhood cancers. It shows young adults that they can lead a normal productive life despite being stricken by such a difficult disease and that this can be overcome just like any other obstacle."

TFIOS best relates to Andrew's story and the person he is. He jokingly tells people that he's just like Augustus Waters. They both had the same cancer and prospective. "The only difference is I lived and didn't lose a leg," he says. He also makes subtle jokes, like Waters. Watch this video and see for yourself.

Wittig says one important thing young adult cancer patients can learn from Andrew is "how to make the best of a tough situation."

"There were many times when Andrew was in the hospital receiving chemotherapy and posting Facebook updates with smiling and laughing photos with his nurses," he says.

Andrew offers three bits of advice for young adults battling cancer.

1) It gets better. Just take it one day at a time.
2) You won't see it now, but you'll be a better person in the end.
3) Watch plenty of Netflix.


Jennifer Nassar is the senior editorial intern at CURE magazine. She is a second-year graduate student at the University of North Texas and a 2013 graduate of the University of Mississippi.


New screening test approved for colorectal cancer


Elizabeth Whittington blog image

This week, the Food and Drug Administration approved a new colorectal cancer screening test called Cologuard, a stool-based test. While there are other stool-based screening tests, Cologuard is the first to use a particular non-invasive method in detecting colorectal cancers and potentially cancerous polyps.

The study results, which led to the approval, were recently published in the New England Journal of Medicine. You can read the full article here.

The trial looked at more than 10,000 individuals who were at average risk of colorectal cancer and between the ages of 50 and 84 years old. The participants used either Cologuard or another type of stool test called a fecal immunochemical test. Cologuard detected 92 percent of colorectal cancers and 42 percent of advanced large polyps, compared with 74 percent and 24 percent, respectively. However, Cologuard did have a higher number of false positives, incorrectly identifying people who were negative for cancer or large polyps called adenomas (87 percent versus 95 percent).

An individual's physician would need to order the test, but the kit is mailed directly to the person's residence. The person collects the sample and mails the kit back to the company using a prepaid mailer. Results are sent to the physician, who then contacts the patient for follow-up.

The test looks for biomarkers in the stool sample that indicate the presence of cancerous cells and blood. As stool moves through the large intestine and rectum, it absorbs cells from large pre-cancerous polyps. By testing the stool using known biomarkers, Cologuard can detect blood cells and polyp cells that contain colorectal cancer-related mutations in its DNA. While the test accurately detects potential cancer, individuals who have a positive result would need to undergo a colonoscopy to confirm the polyp or cancerous mass.

Current guidelines for colorectal cancer, which include fecal occult blood tests, sigmoidoscopy, and colonoscopy, do not include the new screening test. However, that may soon change. The Centers for Medicare and Medicaid Services issued a proposed national coverage determination for the test and is expected to be issuing a coverage ruling before the end of the year. Updated guidelines may follow.

Unlike sigmoidoscopy and colonoscopy, the Cologuard test is not invasive and does not require the prep process that many people find uncomfortable. The new test may ultimately improve the rates of colon cancer screening and hence lower cancer incidence over time. The test's maker has set the price for the test at around $600.

Study authors mentioned in the NEJM article that offering a choice among tests may improve the uptake of screening. "A non-invasive test with a high single-application sensitivity for curable-stage cancer may provide an option for persons who prefer noninvasive testing."

Routine colorectal cancer screening is effective at lowering rates of colorectal cancer and death from the disease. Several groups, including the U.S. Preventive Services Task Force and the American Cancer Society, recommend people of average risk begin screening at age 50. Individuals with a family history of colorectal cancer or a medical history that increases the risk of colorectal cancer should start screening at an earlier age.

Updated 8/15/2014: One of our readers posed the question on when the test would become available. We reached out to the test's maker, Exact Sciences, and received this statement from CEO Kevin Conroy: "Exact Sciences is able to take orders for Cologuard today in the U.S. The company is completing the expected and appropriate packaging and logistical activities that are normal immediately following FDA approval. The company should be able to process orders in the very near future."


Shedding light on sun protection: Separating sunscreen facts from fiction


Shannon Trotter

August is Summer Sun Safety Month, an ideal time to think about the effectiveness of your sun protection habits. Protecting your body from the damaging rays of the sun has always been a serious health issue, but with SPF numbers ranging from two to 100 and new "sunscreen" pills hitting the market, it's surprisingly difficult to understand how much and what type of protection is best. It's important to know the facts so you don't get 'burned' by your sunscreen now and in the future.

For instance, when it comes to sunscreen, more is better. Many people don't slather on enough sunscreen to get the full protective coverage they need. Look for a product labeled "broad spectrum" with an SPF of 30 for the best protection against skin cancer. Apply sunscreen about 30 minutes before sun exposure and use about 1 oz. of sunscreen for the body, which is enough to fill a shot glass. Reapply that same amount every two hours. For a day at the beach or the pool, one person should use about half of an 8 oz. bottle.

I see a lot of patients who think sunscreen with a higher SPF means they can apply less and stay out in the sun longer. That's not true, and SPF numbers can be deceiving. For example, SPF 15 blocks about 93 percent of harmful sun rays, and SPF 30 blocks about 97 percent. Thus, doubling the SPF doesn't necessarily provide that much more protection. I tell my patients that SPF 30 is usually sufficient for most people, and the focus should be on reapplication every two hours or sooner, if you're sweating a lot or in the water.

Keep in mind that no sunscreens are "waterproof." If a lotion is labeled, "water resistant," the FDA now requires manufacturers to designate how long the sunscreen is protective while swimming or sweating.

I also caution patients about using spray-on sunscreen. It's a great option, but it can be difficult to get an even application. Make sure you spray an even coat across your skin, holding the bottle about 4-5 inches from your body. Be careful not to inhale spray sunscreen. When applying it to the head or neck, spray it into your hands first and then rub it onto the face, neck or scalp.

Although researchers are trying to develop a true "sunburn pill," the ones available today are only supplements, not federally approved medications. While they may seem like a safe alternative to sunscreen, there's no real evidence that pills alone offer protection from the sun's rays. Antioxidants in some supplements have shown promise, but before taking them you should talk to your doctor, as they could interact with other medications.

In addition to sunscreen, I advise patients to use other methods to protect themselves from the sun, such as clothing that covers their arms and legs, wide-brimmed hats that protect the face, head and ears, and sunglasses that have 100 percent UV protection. You can also buy clothing that has sun protection in it, called UPF or ultraviolet protection factor. It's also a good idea to avoid midday sun, the time when the sun's rays are the strongest.

By taking action to avoid being burned by your sunscreen this month, you're taking action to protect yourself from skin cancer in the future. Simply knowing your number and the best ways to apply your lotion can reduce serious health risks. The next time you sit in the sun, remember to separate the facts from fiction.

Shannon C. Trotter is a dermatologist at The Ohio State University Comprehensive Cancer Center specializing in skin cancer.


Immunotherapy for the melanoma patient with an autoimmune disease


Katherine Lagomarsino blog image

In the past few years, advances in melanoma treatment have generated a flurry of activity, and much of that activity has focused on immunotherapy. From vaccines to checkpoint inhibitors to T-cell therapy, these strategies involve harnessing the body's immune system to kill cancer cells, and it has been used in a variety of other cancers, from lung to bladder to kidney cancer. But is immunotherapy appropriate for the patient with an autoimmune disease?

Recently, two melanoma researchers at MD Anderson Cancer Center in Houston addressed that point during an OMEDLive webinar hosted by the Albert Einstein College of Medicine at Yeshiva University in New York.

"We often have these kinds of patients that come in and have other diseases, such as autoimmune diseases, where the immune system is already attacking the body," said Patrick Hwu, chair and professor at MD Anderson's Department of Melanoma Medical Oncology, who co-hosted the webinar with Sapna Patel, an assistant professor. These diseases include, among others, psoriatic arthritis and ulcerative pancolitis, both of which might require medications that suppress the immune system. In some cases, either immunotherapy is ineffective because of the immune-suppressing drugs, or it can exacerbate a condition, like in the case of ulcerative pancolitis.

"The issue is whether you would withhold immunotherapy from somebody who has an essentially life-threatening melanoma simply because they have an underlying autoimmune disease," explained Patel. "However, it is also the idea that if you're stimulating the immune system, and someone is on therapy that may be blocking the immune system, how effective will that be, or are you setting them up for toxicity?" In addition, transplant patients on anti-rejection medication might not be good candidates for immunotherapy, as those therapies might enhance the possibility of organ rejection.

With this in mind, what are the options for melanoma patients who must take immune-suppressing drugs?

"You first go looking for actionable mutations in that patient," explained Patel. "Maybe there is a way to treat them outside of using immunotherapy." Some targeted therapies, such as BRAF inhibitors and MEK inhibitors, are showing promise in treating melanomas with certain mutations. She added that chemotherapy might still be an option as well.

"But also you have to have a really important discussion with the patient if they have a very aggressive melanoma that could be terminal if it's untreated and unchecked, and yet they have this underlying autoimmune disease," said Patel, regarding determining the risks and benefits of immunotherapy. "If your back is up against the wall, you may have to bite the bullet."

For the full presentation, click here.


Growing old is empowering


suzanne lindley blog image

Get up. Get ready. Go.

Life moved in a routine that was fast and furious before cancer. Time never allowed for moments to really stand still, free and easy, just to enjoy. We were too busy planning for the rest of our lives when colon cancer, like a thief in the night, stole our perceived certainty of the future. At 31, we put our dreams on hold. We mourned the fact that I would die. We slowed our pace and began to savor each day.

During this decade and a half of dancing with cancer, I have experienced a future that I once thought had been snatched by colon cancer. Instead, I've gladly joined the ranks of a growing population of long-term advanced cancer survivors. With increased cancer research and the development of new therapies (now 10 available for colon cancer where once there was only one) and treatments (like Cyberknife, RFA, SIR-Spheres and the list goes on), we are creating our own survival statistics. It hasn't happened overnight, but instead with the slow and steady ticking of the clock that culminates in so many rich experiences. Life and death, grief and joy, sadness and happiness, trial and tribulation. It's hard to reminisce these past 15 birthdays with cancer and to fully absorb all that has happened in this time. I barely remember life without cancer but know that many of my most treasured memories have been held more tight and dear because of it.

The age of time seems to tell only the number of years I have lived but little about the milestones and memories made along the way. Age shares not the number of cherished memories: together times picking blackberries, walking in the morning dew, of the heavenly smell of honeysuckle or the crunch of autumn leaves beneath our feet. It doesn't embody the milestones hastened by cancer or the rush to slow down and simply grab the muchness of now.

Aging in spite of cancer does, however, provide the wisdom that borrowed time is indeed a splendid gift. The need to "get up, get ready, and go" has long been forgotten; consciously replaced with the power of "holding fast, hugging often, and hoping always." Here I am, celebrating 47 years of life and feeling that growing old - if you consider 47 old - is empowering.

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.


Myeloproliferative neoplasm heroes honored


Kathy LaTour blog image

One of my favorite things about what we do at CURE is to honor those who help behind the scenes to support and educate patients and their families and friends. Every year we hold the Extraordinary Healer award to honor a nurse who goes above and beyond, and last year we added a new award event where we honor eight heroes who have served those with myeloproliferative neoplasms (MPNs).

While MPNs are not seen as cancer because they don't act like malignancies, MPN patients and those who have rare cancers share in many of the side effects of treatment and possible early mortality, as well as the lack of information and support for what they are experiencing.

Those suffering from this family of blood disorders not only have a complicated name to remember but also a complicated definition for one of eight types of neoplasms included in the MPN category. Within the eight, three of the neoplasms are related to a gene that produces a protein that impacts the growth of the conditions. Sometimes called the "classic" MPNs, these three are Polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis (PMF).

Those with PV have an excess of oxygen-carrying red blood cells, often accompanied by an elevated platelet count that could result in life threatening blood clots. ET is driven by an overproduction of platelets, which can slow the flow of blood and increase an individual's risk of clotting. PMF develops when the blood stem cells fail to mature properly, resulting in decreased levels of red blood cells, white blood cells and platelets. This eventually results in a scarring effect in the bone marrow impacting the marrows ability to form new cells.

Nearly 300,000 Americans live with one of these classic MPNs, and, because they are rare, those who can provide help and support to the newly diagnosed have become increasingly important.

Last year in conjunction with Incyte, CURE recognized eight MPN Heroes, patients and healthcare professionals who have committed to these diseases either personally or professionally. The MPN Heroes were recognized for either their individual commitment to patients by providing guidance, education or support above and beyond, or a broader commitment to the MPN community, meaning leadership in developing services and programs addressing the needs of MPN patients their families, friends, caregivers and medical professionals.

This year eight MPN Heroes will again be honored and CURE is collecting nominations now until September 12, 2014. So, if you know of someone who has made a difference in the lives of those with MPNs now is the time to nominate them as an MPN hero.


Stuart Scott's acceptance of Jimmy V award shows courage, vulnerability


Elizabeth Whittington blog image

I'm sure by now you have probably seen or at least heard of Stuart Scott's acceptance speech for the 2014 Jimmy V ESPY Award for Perseverance. Stuart's experience with appendiceal cancer, including qualifying for a clinical trial, was chronicled in a short video that aired before the award presentation.

The video is filled wisdom, humor and inspiration.

"My first thought was 'I'm going to die.' Then about probably 5 seconds later, "I'm going to die and leave Taelor and Sydni. I don't want them to be without a dad. Cancer kills you. People die from cancer."

That was seven years ago. He continued to work at ESPN, travel, exercise, be there for his family... he lived his life. He looked into clinical trials. He underwent treatment. He shared his experience with cancer to the public. He "fought" and promised to "never give up."

Watching it with my family, I noticed some things my family probably may not have: The warrior analogies that many patients and survivors have issues with, the "never giving up," which is from the speech that Jimmy Valvano, who died of cancer in 1993, is so well-known for. Is dying from cancer "giving up" or not fighting hard enough?

Not only was the video moving, but his speech afterward laid those concerns to rest. He was quick to amend what he said in the video.

"Don't give up. Don't ever give up," he quoted Jimmy V's speech again. "I said 'I'm not losing. I'm fighting. I'm not losing.' I have to amend that. When you die that does not mean you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live."

He said he couldn't do the "don't give up" by himself. He mentioned his family, his coworkers and bosses, his medical team, strangers that lift him up, especially when he was too sick to "fight" by himself, which apparently was as recent as last week.

Kudos to Stuart Scott to not only give an inspiring speech about living with cancer, but also showing his vulnerability. Living with cancer is not all about fighting, never giving up, being strong, and hopeful all the time. Scott shared his moments of weakness and doubt, which may have been just as inspiring as him promising to never give up.

You can view the video here.


Facebook Chat recap: Living with neuropathy


On July 9, CURE hosted a Facebook Chat on neuropathy after a cancer diagnosis. We invited Michael Stubblefield, a cancer rehabilitation physician at Memorial Sloan Kettering Cancer Center; Pam Shlemon, executive director of the Foundation for Peripheral Neuropathy; and CURE's editor-at-large Kathy LaTour to answer your questions on neuropathy.

Stubblefield specializes in the identification, evaluation and treatment of neuromuscular, musculoskeletal, pain and functional disorders caused by cancer and cancer treatment. In addition to neuropathy, he also takes care of complications of radiation and surgery as well as of the cancer itself.

You can view the full chat here with a Facebook account.

This was one of the most fast-paced and involved chats we've had to date. Our experts answered most of the questions posed during the chat and a few that were emailed and posted ahead of the chat on the Events page.

Here is a selection of the questions answered during the chat:

Q: CURE magazine Our first question for our panel comes from an earlier email: Pam, what are the main symptoms of neuropathy? Can there be different symptoms for different people?

Pam Shlemon CIPN symptoms usually appear symmetrically in a stocking-glove shaped distribution in the feet and hands. Typical symptoms include numbness, tingling, burning and electric-shock like symptoms or muscle weakness. Affected patients can experience impairments including difficulty in walking, increased risk of falls and weakness and restrictions in fine motor skills such as writing and other manual tasks buttoning your shirt.

Q: Kris Today is Round 12 of 12...The neuropathy (both fingers and feet) didn't come on until the last week or two...Should it go away over time? Is there any kind of exercise/therapy I can do to help get rid of it?

Kathy LaTour, CURE This is one of those questions that is answered with a probably. Doctors don't know who will get neuropathy and they don't know when it will end. The majority of neuropathy resolves over time after treatment ends. I have friends whose neuropathy resolved over a year and some over six months.

Q: Janet I had breast cancer over 11 years ago and one of the chemo drugs I was on was taxatear...I started having neuropathy in my feet, toes, and fingers then. I still have some problems with it today. Does neuropathy still happen years after treatment?

Michael Stubblefield One of the common questions I see asked is if the neuropathy will ever go away. The answer to this depends... Most of the time chemotherapy-induced neuropathy does improve over time. In some cases, however, it never goes away. That being said, there are usually effective medications to treat the pain and tingling that goes along with neuropathy. Weakness can usually be improved with physical therapy. Numbness (the lack of sensation) and other symptoms don't respond to medication.

The most common causes of neuropathy in the cancer setting are chemotherapy and the cancer itself. There are a number of less common causes like paraneoplastic disorders. Paraneoplastic disorders occur when the tumor secretes a hormone or protein that causes problems. For instance, certain types of lung cancer (Small Cell) are known to cause a paraneoplastic peripheral neuropathy by causing the development of an antibody that damages nerves.

Nerve damaging chemotherapies include the taxanes (taxol, paclitaxel), the Vinca alkaloids (vincristine) and the platinum drugs (carboplatin, cisplatin). Other types of chemotherapy such as thalidomide, bortezomib, Epothilones also cause neuropathy. The type of neuropathy caused by the platinum drugs and most other types of chemotherapy can be very different because of the way they affect the nerves. Taxanes and Vinca alkaloids damage the long axon fiber of the nerve and tend to cause a neuropathy that can be painful, or associated with abnormal sensations (paresthesias). Weakness is also a common feature of these medications in severe cases. The platinum drugs damage the cell body of the nerve as opposed to the axon and tend to cause more sensory issues such as pain and sensory loss. Platinum drugs do not usually cause weakness although they can cause problems walking because the sensation nerves are greatly affected.

It is important to determine what the exact cause of symptoms is because the treatment can be very different. For instance, if a patient has tingling in the hands because of carpal tunnel syndrome they might benefit from occupational therapy, hand splints, anti-inflammatory medications, or even surgery.

Q: Bill Is there a difference between neuropathy from diabetes and from chemo? How about Parkinson's?

Pam Shlemon Just the only difference is the causes, the symptoms are typically the same and the treatments are also typically the same. The only difference is the nerves that are effected - small fiber and/or large fiber

Q: Robina Will acupunture help?

Pam Shlemon Not every treatment works for all patients. Patients that I have spoken to who have tried acupunture are mixed. Some patients have found relif and other have not. Treatments for PN are not a "one-size" fits all. It is worth giving it a try - there is something out there for everyone.

Q: Bill Can radiation cause neuropathy?

Michael Stubblefield There is a question about if radiation can cause neuropathy. This is one of my favorite topics. Radiation does NOT cause peripheral neuropathy but it can damage the nerves running through the radiation field. For instance if a patient received radiation for breast cancer years ago they can develop brachial plexopathy which will cause numbness, tingling, weakness, and other symptoms that mimic neuropathy. Similarly focal radiation for things like sarcoma can damage the nerves that go through the field. This is called a mono (meaning one) neuropathy as opposed to a polyneuropathy.

Q: CURE magazine Pam asks: I had SGAP (breast reconstruction surgery) five years ago. I have tingling and numbness above, below and to the sides of the incision. I had no idea that this could happen. How many others have neuropathy from surgery alone? Is there anything that helps?

Michael Stubblefield There is a question on pain in the breasts or arm pit after mastectomy and reconstruction. This is a situation where neuropathic symptoms are NOT caused by peripheral neuropathy. It sounds like you have what I call post-mastectomy reconstruction syndrome (aka, post-mastectomy syndrome). Numbness, tingling, spasms, arm weakness, a feeling of constriction in the chest and a number of other symptoms often result from mastectomy and importantly reconstruction. There are a number of different disorders that make up this syndrome but none are peripheral neuropathy. In this case, it sounds like the small nerves that supply the chest and sometimes back were damaged during the surgery and reconstruction. A number of other issues like restriction of the fascia (connective tissue that binds the muscles and bones) are also contributing. This is not uncommon. One nerve that is often damaged is called the intercostobrachial nerve. It is important to understand that this isn't a surgical complication per se but simply a consequence of the surgery that happens in a small percentage of women.

The treatment varies but physical therapy emphasizing myofascial release is often extremely helpful. Some of the same medications used to treat neuropathy such as duloxetine (Cymbalta), pregabalin (Lyrica), or gabapentin (Neurontin) are also often very useful.

One of the common questions I see asked is if the neuropathy will ever go away. The answer to this depends... Most of the time chemotherapy-induced neuropathy does improve over time. In some cases, however, it never goes away. That being said, there are usually effective medications to treat the pain and tingling that goes along with neuropathy. Weakness can usually be improved with physical therapy. Numbness (the lack of sensation) and other symptoms don't respond to medication.

There are questions about the percentage of patient who get neuropathy from chemotherapy. The answer is that it depends on the type of chemotherapy, the dose, and the way it was delivered as well as the type of patients who get it. While 40% may get neuropathy with certain medications and regimens, it goes away for many of them. Unfortunately not everyone will have the neuropathy go away.

Q: CURE magazine What types of integrative therapies are worth trying for patients with neuropathy?

Pam Shlemon Complementary: While complementary and alternative forms of medicine are often thought of interchangeably, there are differences. Complementary therapies are used together with conventional medicine. This might include a regimen of vitamins, supplements, herbs, and 'natural' substances to be used in conjunction with other medications. Integrative: A total approach to health care, integrative medicine combines conventional and CAM therapies into a treatment plan where there is some high-quality evidence of safety and effectiveness.

Complementary and alternative medicines (CAM) are divided into several broad categories:
• Natural Products: This category is the most popular form of CAM, used by more than 15% of the U.S. population. These include herbal medicines, vitamins, minerals, and products sold over the counter as dietary supplements.
• Mind and Body Medicine: Using mind and body practices that focus on the interactions among the brain, mind, body, and behavior, to affect physical functioning and promote health. Examples are: Meditation, yoga, acupuncture, deep breathing exercises, hypnotherapy, progressive relaxation, and tai chi.
• Manipulative and Body-based Practices: These practices focus primarily of the structures and systems of the body, including bones and joints, soft tissue, and circulatory and lymphatic systems. Spinal manipulation and massage fall into this category.
•Energy medicine is among the most controversial of the CAM therapies. These therapies involve the manipulation of various energy fields to affect health. The most common practices include those involving electromagnetic fields (magnet and light therapy).

Q: Mike Hi Dr Stubblefield, I have RFS and some neuropathy after having HD in 1989. I live in Ireland and was wondering if there are any of your colleagues working in this part of the world.

Michael Stubblefield Unfortunately there are not a lot of doctors who have knowledge and experience with this disorder. While we are training a number of Cancer Rehabilitation Fellows here in the United States, I don't know of physicians in other countries who would be able to deal with the neuromuscular and musculoskeletal complications of HL. Treatment of these conditions requires a team approach from both physicians and therapists. There are doctors who have knowledge of the cardiac, secondary cancer, and other medical effects. These are usually in Survivorship Programs.

Q: Can you reduce your risk?

Pam Shlemon Collaborate with your team and report symptoms you notice during treatment: Dose reduction, rest period, or halt therapy
Medication before or during chemo. Examples: Calcium and Magnesium infusion, new evidence strongly suggests that intravenous calcium and magnesium therapy can attenuate the development of oxaliplatin-induced CIPN, without reducing treatment response. Accumulating data suggest that vitamin E may also attenuate the development of CIPN, but more data regarding its efficacy and safety should be obtained prior to its general use in patients. Other agents that look promising in preliminary studies, but need substantiation: Acetyl-L-carnitine, Alpha lipoic acid, Duloxetine, Glutamine, Glutathione, Oxcarbazepine, Xaliproden, Venlafaxine

Q: Beth I'm 7 yrs post chemo for breast cancer. Had 4 rounds of adriamycin and cytoxin. I've started having burning pain in 1 foot the last couple of months that the Dr says is neuropathy from the chemo. How long after chemo can neuropathy start?

Michael Stubblefield There are a lot of questions on if neuropathy from chemotherapy can come up years later. It is not possible to get neuropathy from chemotherapy years later. Certain medications like the platinum analogs (cisplatin, oxaliplatin, carboplatin) can do what is called "coasting." This means that the medications damage the nerve cell body over time and result in symptoms a few months (not years) later. In these cases, the symptoms usually start during or just after chemotherapy and can progress for 6 or even 9 months before they level off.

When a patient develops neuropathic symptoms years after chemotherapy then it is ALWAYS another disorder that is responsible. Certainly having the nerve previously damaged can contribute to the development of neuropathic symptoms years later because the nerve is weakened but still there must be something else going on for a patient to develop symptoms.

Common things I see causing neuropathic symptoms years later are spinal stenosis or another type of neuropathy such as diabetes, B12 deficiency, CIDP (chronic idiopathic demyelinating polyradiculoneuropathy), etc. It is important to figure out what the cause of these symptoms is because the treatment of neuropathic symptoms varies considerably for all of these disorders. For instance, if neuropathy is caused by B12 deficiency then replacing B12 can make the patient much better.

Kathy LaTour, CURE When I visited with a podiatrist a few months ago, he said he is seeing many more cases of neuropathy that is ideopathic, meaning for no apparent reason. He said the numbers have really increased.

Q: Peter I went through detox after a year and several months from a Stem Cell Transplant for Stage IV non-Hodgkins Lymphoma. My feet hurt so bad that I crawled through my Mother's house. I could no longer watch her cry or being in so much pain. Is this something that you would recommend?

Pam Shlemon Support groups are very beneficial to all PN sufferers. It allows you to hear what other are going through and successful treatments that are working. If you need to find a support group in your area you can contact the Foundation for Peripheral Neuropathy. Many support group bring in speakers such as, physical therapist, neurologists, dietitians, Tai Chi experts and others to educate patients on neuropathy and treatments.

Q: Melva I have neuropathy in feet and fingers I have resigned myself to the fact that it will always be there. Chemo ended 3 yrs ago and I hate to take another drug to fight this. Is there anything besides drugs that will help?

Pam Shlemon Yes, you can try Complimentary & Integrative medicine, acupuncture, massage, biofeedback, Tai Chi

Q: Laurie Can neuropathy affect only one foot, or does it always affect both?

Pam Shlemon It can affect only one foot. I have CIPN from cancer and only affects my one foot

Michael Stubblefield This is not likely to happen with chemotherapy as they usually cause a distal symmetric type of neuropathy. When neuropathic symptoms are asymmetric this almost always means that there is something else going on. For instance if a patient has a pinched nerve in their back from a disk, then this can become symptomatic when they are challenged with neurotoxic chemotherapy. Similarly, if you have carpel tunnel syndrome and then receive a medication like taxol, vincristine, or a platinum drug, it can make your carpel tunnel syndrome worse. I see these types of issues in clinic all the time.

Q: Rick Can you please provide further information on physical therapy?

Michael Stubblefield Physical therapy is excellent for improving strength, gait, and other functional deficits. Occupational therapy is excellent for improving a patient's ability to participate in activities of daily living. It is not as good at improving numbness and tingling. Some modalities like TENS can help improve these sorts of symptoms.

Robb Hi my name is Robb Bolton and I have a nonprofit the offers exercise and wellness programs for Cancer Survivors. We have created a class specific for the symptoms of foot neuropathy. Our program includes exercises for foot strengthening, flexibility, mobility, balance and massage techniques. We have had over 40 participants so far with great success. I am curious if you have heard of any similar programs and if so where? I think we could be on to a potentially great program for foot neuropathy suffers but our nonprofit is small and I need help to research the benefits of our programs and gain support for the medical community. Thanks for any help.

Robb Footsteps Forward exercise program designed to address the symptoms of peripheral neuropathy of the feet and lower extremity.

Q: C McAllister My ?s are similar to some posted already....numb finger, toes, left foot more than right dr. commented they should improve within year...I see many having this same issue, and not improved Have read the current article in CURE....learning to adjust, seem to be what I am going to have to do.... it is disheartening Mine is Breast dancer stage IIIC Had taxol. Oct-Dec 2013 Herceptin began Oct goes through this Sept.

Kathy LaTour, CURE As the oncologist in the article said, it seems that every option seems to work for someone. Don't give up. Go to a neurologist and if they can offer no help, ask them who would be next.

C McAllister I am very disappointed that I was not told that the neuropathy would not clear up totally.... I would have liked being told it would possibly linger .....going into treatment to begin w/ is much to know/experience/ I had read tons, as I have had others in family w/cancer/all types, my hubby, just before me ! as it is I have come to terms w/ drs. constantly saying ... well everyone is different for everything to do w/side effects of all kinds....I do understand this thought, but feel that they could elaborate a bit more..... it is all sad, sad to me...and the "cheer leading" type comments get to me after awhile!

Michael Stubblefield I agree with Kathy that patients must advocate strongly for themselves. The internet is a wonderful resource. I get 2-3 new patients a week from all over the US who have found me online. There are other specialists who are superb at diagnosing and treating neuropathy. Finding these folks isn't that difficult as they usually have online bios from their medical centers, private practices, or wherever they work.

Q: Sandy Lee What type of doctor is best to work with for neuropathy caused by chemo? Neurologist, Endocrinologist or other?

Michael Stubblefield There are a lot of choices for this. Often a neurologist is the right choice but rehabilitation medicine specialists, pain management specialists, and even your PCP. In general neurologists and rehabilitation medicine specialists (physiatrists) are the best choice. That being said, not everyone has access to all types of physicians depending on where they live.

Michael Stubblefield There must be a lot of frustration for people who have neuropathy but don't know where to go. This is particularly true for survivors in rural areas. If you don't have a neurologist, physiatrist, or pain management specialist who treats neuropathy available, then the task of treating you falls to the physicians you do have available (your internist, primary care physician, oncologist). Often it may be possible to get an opinion at a specialized center (I.e., the University of X) and take those recommendations back to your local physicians to co-manage you. I have a number of patients from all over the country and world that I do this for. The first step is finding the specialist willing to work with your home physicians. Most physicians at academic medical centers are willing to do this.

Pam Shlemon It is imperative that you become your own advocate for your healthcare. One way to find a neurologist that focuses in neuroapthy is to google their interests through their CV, Bios. Typically you find this information at larger academic centers. You can also call the neurologists offices and ask questions to see how knowledgeble they are. To see a list of questions to ask your doctor you can visit our website at for The Foundation For Peripheral Neuropathy.

Michael Stubblefield While we have spent a lot of time talking about the causes and differential diagnosis of neuropathic symptoms we haven't talked much about treatment. There are several consequences of neuropathy as we have discussed including pain, numbness, weakness, gait disturbance, trouble with activities of daily living (ie dressing).

Each complication may require a different treatment. Ironically pain is often one of the easiest symptoms to treat. The newer medications such as duloxetine (Cymbalta) and gabapentin (Lyrica) can be very effective and there is a recent article in JAMA demonstrating this. The use of this medication is a skill. They often need to be titrated slowly and to high doses. When the nerve stabilizing medications (Cymbalta, Lyrica, Neurontin, etc) do not work or only work partially, then opioids are often needed. The vast majority of my patients have very little pain when the medications are titrated to effective doses over time. The skill comes in getting them on the high doses while minimizing side effects.

CURE magazine Thank you to our guests, Michael Stubblefield and Pam Shlemon. Thank you to Kathy LaTour, CURE, and to all of you, for sharing your story and what you've learned while living with neuropathy. Please feel free to continue to use the Event page to share your story, tips and words of support to each other. Thank you and have a good day!


Story submissions: Young adults, love, Hollywood ... and cancer


Jennifer Nassar

ATTN: Young adult cancer patients or survivors: Here's a chance to have your cancer story featured on

Cancer is popular in storytelling today. Movies, such as "The Fault in Our Stars," "50/50," "A Walk to Remember" and more, have been sharing the cancer journeys of young people, particularly love stories during treatment.

Is your story similar to a movie you've seen recently? How has it been different than the media's portrayal of cancer in young adult relationships? We want to share your story and opinion about how the entertainment industry gets cancer – both right and wrong.

Send an email to with the following three sections:

1) Story: A brief description of your cancer journey. When did you receive your diagnosis? Are you in remission? If yes, for how long? What physical and emotional struggles are you facing or have faced?

2) Movie: Pick a movie that is similar to your story. How do you relate to it?

3) Entertainment View: What's your opinion of how cancer is portrayed in storytelling today? Do writers need to do more research? Is it portrayed correctly? If it's not convincing, do you find it insulting to cancer patients and survivors?

Send an email to, by 12 p.m. Central July 18. Please include your name, city, cancer type, phone number and email. If chosen, Jennifer will contact you to schedule an interview.


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