Tuesday, October 25, 2016

New test IDs aggressive form of breast cancer

A University of Michigan researcher has invented a technology that can take some of the guesswork out of whether one form of early breast cancer is aggressive and likely to metastasize.
Dr. Howard Petty, a cancer survivor himself, came up with an imaging technology called Biomarker Ratio Imaging Microscopy — or BRIM — that highlights certain proteins in aggressive cancer cells.
His research could help the thousands of American women who are diagnosed every year with ductal carcinoma in situ, also known as DCIS, or stage 0 pre-invasive cancer. Doctors most often recommend removing the DCIS tissue either with lumpectomy or mastectomy because they can’t accurately determine whether it is aggressive or slow-growing and unlikely to metastasize. Radiation often follows to ensure all abnormal cells were destroyed.
But Petty, a professor of ophthalmology and visual sciences, microbiology and immunology, says many times, those are unnecessary treatments.

"With a stage 0 cancer, a lot of those women who  forgo all treatment are fine," he said. "Yet some of the women who  forgo treatment develop invasive breast cancer. We really need to be able to provide a way to assure patients that you really need the surgery or be able to say your cells have not differentiated into a dangerous state. There is no way to make that call. Physicians don’t want to get sued. Patients don’t want to get invasive disease, so we’re paying for 24,000 women a year who don’t need any treatment, but we’re paying for their mastectomies ... and radiation when they don’t need it at all."
Petty hopes his technology also will have implications for other cancers.
"What we have here is a way to determine whether or not any particular cells are dangerous. So I think that’s going to be useful. ... In the short-term, we can help with DCIS. In the longer term, maybe within 3-5 years, maybe we can start helping with other forms of invasive cancer" such as prostate, thyroid and lung cancers.
"What we’re talking about here is personalized medicine."
Petty is working now to launch a new company, called Breithmed Inc., with the help of the University of Michigan. The company would run the BRIM lab tests once the process gets certification.
Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus


Doctors thought he just had jock itch. Then it spread.

Late Friday afternoon on Dec. 4, 2014, Stephen Schroeder was waiting to board his packed flight from Philadelphia to Las Vegas for a much anticipated long weekend with his son when his cellphone rang. On the line was an unexpected caller: his doctor, reporting test results sooner than Schroeder had expected.
Listening intently, Schroeder was flooded with disbelief as he struggled to comprehend what he was hearing. Using the lip of a trash can as a writing surface, he scribbled notes on the back of his boarding pass, making the doctor spell out each unfamiliar word. Then he sent a terse text to his wife, who was at their home in the Philadelphia suburbs, and got on the plane.
Onboard, Schroeder, then 55, fired up the balky in-flight Internet, desperate for information.
What he read over the next five hours left him alternately terrified, stunned and then, as denial took over, skeptical. “I kept thinking this must be some kind of really stupid mistake,” he recalled. “The diagnosis had to be wrong.”
Schroeder would discover that the pesky rash he and his doctors had dismissed as inconsequential would take over — and threaten — his life.
The experience would provide a crash course in the importance of finding experts who could provide appropriate treatment, in the necessity of learning as much as possible about a disease, and in the loneliness of coping with a diagnosis so rare it lacks a support group.
A case of jock itch
In the fall of 2013, Schroeder noticed a small, purplish pimple on his groin. “I was pretty sure it was an ingrown hair, so I ignored it for six months,” figuring it would go away on its own, he recalled. The pimple disappeared, replaced by a dime-size red, scaly rash on his scrotum. Schroeder said he assumed it was jock itch — vernacular for a common fungal infection of the groin — and did nothing for several more months.
“I’m a guy,” he said. “It didn’t faze me much.” The director of membership development for a purchasing cooperative, Schroeder had been successfully treated for melanoma, the deadliest form of skin cancer, in 1989. He had not had a recurrence and was always vigilant about annual checkups.
In the spring of 2014, as his primary-care doctor was on her way out the door after a routine appointment, Schroeder said he remembered the red patch “almost as an afterthought” and mentioned it.
She examined the spot, agreed it looked like jock itch and suggested he try the standard treatment: an over-the-counter antifungal cream. Several weeks later, when the problem remained, Schroeder returned. His physician and one of her partners took a look and prescribed a stronger antifungal medicine.
“They both agreed it was nothing to worry about,” Schroeder recalled. “It wasn’t painful, just annoying” and itchy.
The second medicine was no more effective than the first. Schroeder then consulted his dermatologist. He, too, initially agreed it was a stubborn fungal infection, which thrives in moist, dark areas of the body. Later, the dermatologist changed his mind and suspected eczema, a skin inflammation that causes redness and itching. Another possibility, he told Schroeder, was that he had developed contact dermatitis, a common allergic reaction to the shampoo, soap or fabric softener he used.
Schroeder thought that was odd, but he changed his shampoo and soap brands and stopped using fabric softener. “I think he was winging it as he went,” Schroeder said of his dermatologist. The rash didn’t improve.
Fifteen months after the first symptom and a few days before his Las Vegas weekend, Schroeder returned to the dermatologist and asked him to perform a biopsy to determine the cause of the red patch.
“Steve, this is kind of weird,” he remembers the dermatologist saying when he answered his phone at the airport.
Searching for experts
The doctor told Schroeder that his “jock itch” was actually an extremely rare, invasive cancer called extramammary Paget’s disease (EMPD), a malignancy that involves the apocrine glands that produce sweat; it often affects the vulva, scrotum or penis.
The cause of the cancer is unknown and doctors don’t know whether family history plays a role; some EMPD patients have close relatives with breast cancer, as does Schroeder, whose mother battled the disease.
EMPD is slow-growing; a two-year delay between the appearance of the first symptoms and a definitive diagnosis is not uncommon, studies have found. One reason is that it lacks few hallmarks and mimics eczema and other benign skin disorders. In some cases, EMPD reflects an underlying cancer elsewhere in the body, but in other cases, including Schroeder’s, no other cancer can be detected.
If left untreated, EMPD can spread and become lethal. Only a few hundred cases have been reported worldwide, most of them in women over 50.
As Schroeder tried to absorb the news, the dermatologist told him that he knew nothing about EMPD. He recommended that Schroeder consult a plastic surgeon.
Once in-flight and online, Schroeder was aghast at what he read. “It said things like, ‘This is a death sentence,’ ” he recalled. “I was just freaking out. I spent a lot of time praying and a lot of time crying” as surreptitiously as possible. None of his fellow passengers or the flight crew said anything.
The plastic surgeon Schroeder consulted was no help; he told Schroeder he had never heard of EMPD. “I didn’t know how I was going to find the right people. It was a really scary time. I quickly tried to research who is the expert in this,” he said, but found little that was helpful.
Schroeder said it did not occur to him to call specialized hospitals. “I’d never heard of Sloan Kettering,” he said, referring to Memorial Sloan Kettering Cancer Center in New York, a hospital that would later loom large in his life.
“I felt like I was fighting the cancer battle myself. I learned to be inquisitive and to ask questions.” Schroeder called his dermatologist for help finding a doctor and was referred to Bradley D. Figler, then the director of reconstructive urology at Thomas Jefferson University in Philadelphia. He felt reassured when he learned that Figler was treating another man recently diagnosed with EMPD. In fact, Schroeder was the fourth EMPD patient Figler had seen in his 10-year career.
“The cases were all pretty similar,” said Figler, who is now an assistant professor of urology at the University of North Carolina School of Medicine. “They’re all middle-aged white guys.”
In January 2015, Schroeder underwent about eight hours of surgery at Thomas Jefferson to remove the large cancer, which had grown to encompass an area two inches by three inches and to rebuild his scrotum, using skin grafted from his left leg.
Figler said that the operation, which he performed with other specialists, involved Mohs surgery, in which thin layers of skin are progressively removed and examined under a microscope by a pathologist until there is no detectable malignancy. The goal is to remove all cancer while minimizing damage to surrounding tissue. That is particularly tricky in EMPD cases, Figler said, because the cancerous cells often are not clumped together.
“He dealt with pretty radical surgery and a very significant recovery well and took it all in stride,” Figler said. “It’s really difficult to find expertise in this disease. He really sought it out.”
“I think this surgery is difficult on a lot of levels,” the surgeon continued. “Men get a lot of their self-image from this region.”
Figler said it is unclear whether Schroeder’s melanoma 25 years earlier played a role in the development of EMPD.
‘Like an octopus’
After Schroeder’s six-week recovery, the waiting began. Recurrence is the rule, not the exception. “This cancer is almost like an octopus,” he said.
Last year, Schroeder and his wife moved from Philadelphia to Spokane, Wash., to be closer to relatives. In October, he discovered another red patch, not far from the location of the first, and underwent a second surgery in Spokane, less extensive than the first.
One of his doctors pointed him to a study underway at Sloan Kettering involving a noninvasive imaging technique using confocal microscopy, which may be able to detect some cancers earlier than usual and with more precision.
Schroeder enrolled in the study. Earlier this year, doctors there found three suspicious areas near the site of his original surgery, including on his leg; biopsies revealed EMPD in those locations. Two months ago, Schroeder underwent a third operation at the University of Washington in Seattle. He has returned to work and periodically flies to New York for testing as part of the study.
“I’m going to use whatever tools I can find at my disposal to try and keep this thing at bay,” he said.
One of the hardest aspects of his disease is the lack of a peer group. He has never talked to another person with EMPD but hopes to do so and has told his doctors to feel free to give his contact information to other EMPD patients. Schroeder set up a Web page several months ago but so far has not heard from anyone. He says the love and support of his family, particularly his wife, has been essential in helping him recover.
Schroeder hopes his experience will serve as a cautionary tale. “Guys like to put stuff off,” he said. “If this convinces one guy to get something checked out, it’ll be worth it.”
Submit your solved medical mystery to sandra.boodman@washpost.com. No unsolved cases, please. Read previous mysteries at wapo.st/medicalmysteries.

Tuesday, October 18, 2016

How To Be There For Your Friend Who Has Cancer — #8 Is Brilliant

When someone close to you has cancer, it can be difficult to know what to say or do. Do you act like everything will be okay, no matter what her prognosis is? Do you make a bunch of freezer meals and drop off casseroles weekly?
There are many things you can do for someone going through cancer. The important thing to remember is that this is about what your friend needs, and you can use your firsthand knowledge about her likes/dislikes to make small gestures even more meaningful.
We’ve compiled a list of tips and thoughtful gestures that can make your friend feel cherished and supported.

  1. Send well wishes, cards, messages, and texts, but don’t overwhelm her. Set a reminder on your phone, or set a specific day where you always check in, even a simple “thinking of you.” Let her know that she doesn’t need to respond if she’s not up for it.
  2. Make or deliver meals, and drop them off in containers you don’t need returned. Or have food delivered from her favorite restaurants.
  3. Focus on the person instead of the illness when you ask her how she is. Ask her what she’s been up to or what she’s reading. Stroll down memory lane or talk about future day trips you can take together.
  4. If you’re very close to your friend, offer to be the sieve for messages, phone calls, and gifts. Having someone who is able to field concerns and well wishes can be a welcome relief for your friend so she doesn’t get overwhelmed or tire herself out trying to respond to everyone.
  5. Don’t offer medical advice.
  6. Make frequent, shorter visits rather than lengthy stays that may exhaust her. Call ahead first to make sure she’s up for it.
  7. Accept her coping mechanisms. We all have different ways of handling stress and sickness. Understand that if she grows distant, she’s just trying to grapple with this huge change. Be there for her when she decides she’s ready for company. If she’s angry or lashes out, understand that anger and frustration are part of the process. Love her anyway.cancer-hands_shutterstock_222626113
  8. When you visit, bring along your own book, knitting, or other quiet task, so that you can sit with your friend without her feeling like she needs to entertain you if she’s tired. Sometimes silent companionship is all she needs.
  9. If you’re the super-organized friend, put your talents to good use by creating a calendar. Mark down treatment appointments, days where friends are delivering meals, and appointments her children or spouse may have. Take it a step farther by making sure that there is a friend or caretaker that can drive her to appointments or at least stop by and sit with her (if she wants that).
  10. Offer to do the cooking and cleaning around the house, whether it’s once a week or once a month.
  11. Gift a housekeeper, a traveling masseuse, or a traveling hair stylist/manicurist. Getting some pampering at home (or if she’s up for it, taking her to their place of business) can be a lovely treat.
  12. Offer to help with special projects she started and is unable to keep up with, like gardening or painting a bedroom.
  13. Donate to cancer research in their name. Help researchers find a cure for cancer by donating to one of our Gifts That Give More. Your entire donation goes to the cause!
  14. Has it been a few months since diagnosis? Check in with your friend. The outpouring of support may have died down as she’s adjusted to her illness. Make sure she still knows she has people to rely on.
  15. Entertain her. Offer to take her to the park or to the movies; buy her the next book in the series she’s been reading; listen to her favorite albums together.
  16. Entertain her family. Keep her kids busy or take her spouse out for a bite to eat. Take her kids to practices or babysit them for a night.
  17. Fundraise for her. Cancer treatments are costly. There are several ways to help raise money for your friend, from flamingo flocking to a car wash to specialized bracelets, and more.
  18. Listen. You don’t need to offer advice or try to come up with a cliche line about how cancer is a journey and she’ll get through it because she’s strong. Just listen. Hold her hand. Tell her that you’re there for whatever she wants to talk about, whether it’s her fears or joys.
  19. If she’s going through chemo and is losing her hair, buy her pretty head scarves, caps, or wigs if she wants to cover it up; or buy her gorgeous earrings if she wants to flaunt her baldness! Take her shopping or order with her online.
  20. Tell her you’re there for her, and mean it. Ask your friend if she needs anything, and be specific. She probably doesn’t want to be a burden, or may not even know what she needs unless she’s prompted. Ask her if she needs anything from this list!


Susan's Special Needs: CANCER INFORMATION RESOURCES: Helpful Cancer Resources brought to you by www. forevercurious.org . ( Forever Curious is a labor of love by a group of librarians and educa...


Helpful Cancer Resources brought to you by www. forevercurious.org. (Forever Curious is a labor of love by a group of librarians and educators seeking to curate the best educational resources).

Cancer.Net  Financial Resources http://www.cancer.net/navigating-cancer-care/financial-considerations/financial-resources

Patient and Caregiver Resources

Guide to Looking Your Best While Overcoming Cancer

Online Cancer Communities

Legal Resources for Cancer Patients

Friday, October 14, 2016

After David Bowie released a video about his cancer death, I realized that two members of my support group had been conducting tutorials on dying with me. Their teaching styles differed, as did the content of their courses, but I was privileged to be able to learn from them that there are many ways of dying and no set right way.
CreditVivienne Flesher
One member of my group, a public presence in our small town because of her articles in the local paper, informed our group that she would not be attending meetings any longer. Having decided that further medical interventions could not extend the quantity of her life without harming its quality, Carrol enrolled in hospice at home.
Once she was set up in a hospital bed with a port and a catheter, I began visiting Carrol, who wanted to hasten her dying not only for herself but for her husband and son as well. Looking remarkably hale, she had stopped eating, though she continued drinking water. With characteristic wit, she posted a blog on the foods she most enjoyed remembering as she began what turned into a lengthy fast.
During one of my visits, Carrol quoted her grandmother’s advice: that we should leave the world a better place than we found it. The sad condition of the world brought to her mind a guy who had once given her the finger as he barreled through an intersection where she had the right of way. Starting to get groggy from pain medication, she focused on me to explain that he had been spreading a ripple of spite which made her want to counter with a ripple of courtesy.
I had traveled to Carrol’s house after a restaurant luncheon at which Ilka, the most private person in my support group, had thrown up. Ilka was embarrassed, but we knew she was dealing with complications from her treatment, including pouches draining the contents of her small intestine and kidneys. Additionally, a series of medical interventions had caused a succession of infections. No need for embarrassment, we assured her as we marveled that she could join us in her condition.
Ilka had already lost a great deal of weight, though she retained her beauty. When I hugged her, she felt skeletal. However, she never spoke about dying or palliative care. Wanting to forestall her dying not only for herself but for her husband and son as well, she had decided to try a clinical trial that required her to travel in her weakened condition to Indianapolis every week — a three-hour round trip.
When the experimental drug further depleted her, Ilka landed in our local hospital. From the hospital, she emailed the group, apologizing for missing our meeting, but hoping to attend in two weeks’ time. Upon her release, I visited her at home, where she insisted that she could deal with the demands of her condition on her own. Pain medication would cloud her mind.
Carrol and Ilka seemed to be teaching me antithetical lessons about how to approach dying. Though I cherished them both, I found myself wondering — as students inevitably do — whether I agreed with their precepts.
Anticipating her own demise, Carrol tried to get death over as efficiently as possible. Clinging to life, Ilka attempted to put death off as long as possible. Sometimes I worried that Carrol took to her bed too quickly. Sometimes I feared that Ilka subjected herself to excessive medically produced suffering.
But after I pondered David Bowie’s final video, I realized that both Carrol and Ilka were underscoring the importance of determining in one’s own way — according to one’s own values — the proper time to relinquish treatment. How difficult that decision must be: to figure out when interventions should be stopped, how active or passive a stance to take toward cancer, which physical deficits can be endured and which cannot.
Carrol and Ilka were teaching me that no one gets a D in dying. Haven’t we all tolerated enough grading to jettison it during our end time? There are many forms of courage: the courage of relinquishing life, the courage of not relinquishing life, and the courage of sharing the experience.
David Bowie shared his experience in the video released on his 69th birthday, two days before his death. In “Lazarus,” he created a portrait of his dying: convulsing in a hospital bed, his face bandaged, his eyes replaced with buttons. After the last words, “I’ll be free / Ain’t that just like me,” a stronger Bowie appears writing in his journal until he backs into a wardrobe, closing it with one hand.
Death as a hideaway, a sanctuary, a withdrawal into the place where costumes are stored: the gender-bending artist suggests that the dead are not gone but closeted and thus capable of returning in transmuted forms.
David Bowie accomplishes this miracle every time “Lazarus” is played and it therefore remains “a gift” to his fans, as his producer put it. The final sequence — of his hand closing death’s door — is resonant with the scenes of instructions I received from dearly missed friends.