The Triage Cancer Conferences Are For You

Who should attend a Triage Cancer Conference?  In short, everyone in the cancer community.  We are coming to 3 different communities with a FREE program that has been designed for patients, survivors, caregivers, health care professionals, and advocates.  Whichever group you are part of, we will provide you with practical relevant information about navigating cancer survivorship, from the point of diagnosis, throughout life.

Where will we be in 2017?

What topics will we cover?

  • Cancer Survivorship: Advocacy & Being Empowered
  • Health Insurance: Understanding Your Options, Navigation, Prescription Drugs, and Appeals
  • Managing Finances & Accessing Financial Assistance Options
  • Taking Time Off Work & Disability Insurance
  • Returning to Work After a Cancer Diagnosis
  • Nutrition
  • Be Prepared: Estate Planning and Other Documents

The cost to register

$0.  Free.  Nothing.  And lunch will be provided free, too!

Are you traveling to the Conferences?

If you are a patient or survivor, we are pleased to offer travel assistance to those who would like to attend one of the 2017 Triage Cancer Conferences, but need help covering the cost of traveling to the Conferences. Travel assistance is limited and applications are reviewed as they are received or until funds run out, so we encourage you to apply as soon as possible.

Free Continuing Education Units

For oncology nurses and social workers, we are pleased to offer up to 6 contact hours absolutely free.  Our conferences have been approved though ONS and NASW, as well as the West Virginia Board of Social Work.  Again, the conferences cost nothing to attend, and offer you up to 6 contact hours free.

Still undecided?

Well, listen to what attendees of the 2016 Triage Cancer Conferences thought.

“I wish all patients could have this training.” – Attendee in Nashville

“Very good seminar! Enjoyed attending and hope that I can share these resources with other cancer patients!” – Attendee in Salt Lake City

“I would like to thank you so much for the very pleasant and informative conference. I am a 6 year cancer free survivor and I so wish that I had this information available to me when I was going through my cancer treatment. I came here today to try to get any resources I could pass on to others in order to help them through their cancer in any way I can. Please don’t stop doing what you are doing. You are so appreciated.” – Attendee in Philadelphia

Triage Cancer Conferences

We hope that we’ve made the case that attending a Triage Cancer Conference will be informative, valuable, and worthwhile.  And, we really hope to see you there!

For more information, please send an email to info@TriageCancer.org or visit the Triage Cancer Conference page on our website

Comfort Kits from GivingComfort.org

The cancer community is full of supportive resources.  Today we’d like to shine a light triage-cancer-blog-comfort-kitson a resource from the McKesson Foundation: Giving Comfort.  Giving Comfort is a program that puts together and delivers comfort kits to patients suffering from cancer.  Working with hospitals, care facilities and service organizations that support cancer patients, Giving Comfort gets these kits to someone who needs it, right when they need it the most.

The kits are customized by age group and gender and are full of things that are both helpful and comforting.  For example, a young girl would receive a kit with fuzzy socks, a soft blanket, a hope chest full of affirmation cards, a stuffed animal, a soft pillow case, a sleep cap and games.  A teen girl would get most of the same things, but with different games.  Giving Comfort came up with the packing lists after surveying over 1,000 patients, nurses and other oncology professionals.

Kits are assembled by a group of volunteers and they are distributed by a network of community partners.  Community Partners include the American Cancer Society Hope Lodges and the Ronald McDonald House.   Kits are provided to the community partners at no cost and are then given to patients at no cost.

To find out more about this thoughtful and generous program, visit http://www.givingcomfort.org.

“You have cancer.” Now what?

by Aditi Narayan, MSW; LIVESTRONG Program Manager

When Ana heard the words “you have cancer” at the age of 23, she was in shock.  She told her parents right away. Her mother wanted to know whether she could still have children after treatment for cervical cancer.  Her father wanted her to get a second opinion.  Her friends wanted to know how they could support her.  Ana wanted to know whether she would live and how much having cancer would cost – financially, physically, and emotionally.

Her doctor told her about the side effects of the recommended treatments, but Ana left the appointment with more questions than answers about the myriad ways cancer would affect her for the rest of her life.

Do I have to tell my coworkers? How much time will I have to take off of work? Can I drive myself to chemotherapy or will someone else have to take me? How much will this cost? Can I afford this?

Unfortunately, Ana’s story is all too common among the more than 15.5 million people affected by cancer in the United States. While your health care team focuses on your medical needs, LIVESTRONG focuses on you, not the disease. Our free, personalized and confidential one-on-one navigation services can help with financial or insurance counseling, education on diagnosis and treatment options, access to discounted fertility preservation services, emotional support, clinical trial matching, and more. We can also help you and your family find essential resources to assist with daily practical issues. Our services are available via phone and online from 8:30am-5pm ET Mondays-Thursdays, and from 8:30am-4pm ET on Fridays. Call 1-855-220-7777 or go online at LIVESTRONG.org/CancerSupport to connect with a navigator today.

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Recognizing that you and your loved ones may want to look for information on your own prior to or instead of contacting a navigator, we created an extensive suite of helpful articles, videos, and tools. Explore this information at LIVESTRONG.org/WeCanHelp.

Within one week of her call with her LIVESTRONG Navigator, Ana

  • Had a better understanding of her cancer diagnosis, the recommended treatment and the potential side effects;
  • She had received free medications to start the process of freezing her eggs at a discounted price;
  • She had scheduled an appointment with another oncologist to get a second opinion after learning her insurance would cover it;
  • She had discussed her financial options with her case manager so she wouldn’t feel overwhelmed with medical bills;
  • She had signed up for an online support group her case manager found for her to learn about ways she could take care of herself during and after treatment; and
  • By using LIVESTRONG Rally to mobilize her support network, she knew which of her family members and friends would be taking her to chemotherapy and bringing her meals for the next two weeks.

By connecting Ana with the resources she needed, LIVESTRONG saved Ana thousands of dollars in fertility preservation and stimulation medication costs, and also saved her the hours and energy it would have taken her to identify these resources and contact them. Contact us to learn about how we can help you today.

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Since 2004, LIVESTRONG Cancer Navigation has helped over 115,000 people like Ana and Iram navigate their cancer at no cost in English and Spanish by being a central hub of cancer support services.

When Adult Children Get Sick, It May Be Hard For Parents To Get Information

When Sean Meyers was in a car accident on a November evening three years ago, he was flown by air ambulance to the emergency department at Inova Fairfax Hospital, in Northern Virginia. With his arm broken in four places, a busted knee and severe bruising to his upper body, Meyers, 29, was admitted to the hospital. While badly hurt, his injuries didn’t seem life threatening.

When his car went off the road, Meyers had been on his way to visit his parents, who live nearby in Sterling. They rushed to the hospital that night to wait for news and to be available if Sean or the hospital staff needed anything. But beyond the barest details, no one from the hospital talked with them about their son’s condition or care, not that night nor during the next 10 days while he was hospitalized.

“All the time he was there, the hospital staff was very curt with us,” said Sam Meyers, Sean’s dad. “We couldn’t understand why we were being ignored.”

After leaving the hospital, Sean moved into his parents’ spare bedroom temporarily to continue his recovery. About a week later, he was in their kitchen one evening with his girlfriend when suddenly he collapsed. He was rushed to the nearest hospital, where he died. An autopsy revealed that he had several blood clots as well as an enlarged heart.

For Sean’s parents, the results were particularly wrenching because there’s a history of blood clots on his mother’s side of the family. How much did the hospital staff know?

“It might have saved his life if they’d talked to us,” Sam Meyers said.

A spokeswoman for Inova Fairfax said, “We cannot comment on specific patients or cases.” But she noted that information about a patient’s care can be shared in a number of circumstances.

These days, when people think about patient privacy problems, it’s usually because someone’s medical record has been breached and information has been released without their consent. But issues can also arise when patient information isn’t shared with family and friends, either because medical staff decide to withhold it or patients themselves choose to restrict who can receive information about their care.

The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) established rules to protect the privacy of patients’ health information while setting standards for hospitals, doctors, insurers and others sharing health care information.

Stepped-up enforcement in recent years and increased penalties for improper disclosure of patient information under HIPAA may lead hospitals and others to err on the side of caution, said Jane Hyatt Thorpe, an associate professor at George Washington University’s department of health policy and an expert on patient privacy.

“For a provider who’s uncertain about what information a provider may or may not be able to share, the easiest and safest route is to say no,” she said.

However, the law is actually quite permissive about providers disclosing information to family members and others who are involved in a patient’s care, said Thorpe.

“If the physician thinks it’s in [the] patient’s best interest to share information with mom or dad or whatever, they may do so,” she said.

They may also decide not to share information, however.

Generally, if a patient is unconscious and unable to give permission to discuss his medical information, a doctor may share details about his health with family and friends. But even if the patient is alert and able to make a choice, a health care provider can use discretion in deciding how much to tell family and friends.

Dr. Wanda Filer, president of the American Academy of Family Physicians, recalled a patient who was an HIV-positive sex worker who didn’t want his family to know about his health, even as he was dying. She honored his wishes. “The family was left in the dark,” she said.

State laws may be more restrictive than HIPAA, requiring patient permission to disclose information to others, said Elizabeth Gray, a research scientist at George Washington University’s department of health policy. However, Virginia law generally follows HIPAA on disclosures, said Gray.

In Sean Meyers’ case, there are unanswered questions. For example, “we don’t know what the patient actually said to the providers,” said Filer.

“HIPAA does allow information to be shared with family or friends based on the patient’s wishes or, if the patient cannot make his/her wishes known, then based on the family member’s or friend’s involvement in the patient’s care,” the spokeswoman for Inova said. The health system’s privacy policy states that it may disclose a patient’s medical information to a friend or family member as permitted under HIPAA and provides details about how to request a form to restrict such disclosures.

There’s no surefire way to avoid lapses in communication or ensure that providers get all the relevant information about a patient’s health. Most smartphones today allow people to store health care information that can be accessed by emergency personnel, said Joy Pritts, a privacy consultant who is a former chief privacy officer in the Office of the National Coordinator for Health Information Technology at the federal Department of Health and Human Resources. In addition to listing allergies and other health concerns, people could state their wishes about disclosing their health information.

In the case of adult children, it may be useful for the child to carry a signed document that authorizes health care providers to disclose and discuss health care information with the parents for a set period of time, said Pritts.

It’s no guarantee, but if a provider is on the fence about disclosing information, “it might help,” said Thorpe.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Infections – The Ugly Side Effect of Chemotherapy

triage-cancer-blog-infectionsWe are all familiar with the common cold, flu and ear aches.  These are all infections – either caused by bacteria or viruses.  Sometimes these infections need to be treated with prescription medicines, but often times our body just gets over an infection.  This is because our miraculous bodies have a built in protection called white blood cells.  When we develop an infection, our immune system produces more white blood cells to fight the infection.  This is the process in a typical, healthy person.

Unfortunately if you have cancer, you are not a typical, healthy person.  On top of the cancer itself, the treatment of cancer can make you sick.  Chemotherapy, while it may be saving your life, can also be putting you at risk of contracting an infection.  Chemo is a powerful drug that goes into your body and kills the fastest growing cells in your body – the good and the bad cells.  So the chemo kills your cancer cells, but it also kills your white blood cells.  Remember, white blood cells are the things you need to fight infections.  Generally, you will experience the lowest white blood cell count 7-12 days after your last chemo dose, and it could last for up to a week.  This period of time is called your “nadir,” meaning lowest point.  At this point you are at the greatest risk of getting an infection.  During this time you need to be extra diligent in protecting yourself against, and watching for signs of, an infection. Infections during chemo can be life threatening and may delay your ability to receive your next life-saving chemo treatment.

What are the signs of an infection?

Fever is the number one and most serious sign of an infection.  Take your temperature anytime you feel warm, flush, chilled or generally unwell.  At your nadir you may not be able to fight this infection on your own, so you need to call your doctor if you temperature is 100.4ºF or higher for more than 1 hour, or a one-time temperature of 101ºF or higher.  Seriously, night or day, call your doctor.  Make sure you:

  • Keep a working thermometer near you, and know how to use it.
  • Keep your doctor’s phone number with you at all times. Make sure you know if there is a different number to call when the office is closed.  Do not hold out through the night, waiting for your doctor’s office to open.
  • If you end up going to the emergency room, tell them right away that you are undergoing chemotherapy. You cannot wait around in a germ infested waiting room while your infection is left untreated.

Other signs of infection include:

  • Chills and sweats, with no fever
  • Change in a cough, or a new cough
  • Sore throat, or mouth sore
  • Shortness of breath
  • Nasal congestion
  • Stiff neck
  • Pain when you urinate
  • Unusual vaginal discharge or irritation
  • Increased urination
  • Diarrhea and/or vomiting
  • Redness, soreness or swelling near surgical wounds or ports
  • Pain in the abdomen or rectum

If you experience any of these signs or symptoms you should call your doctor immediately.

Can you reduce your risk of infection?

Every school age child knows that you can avoid a cold or flu by washing your hands.  As a cancer patient receiving chemo, you need to be absolutely obsessive about this.  Good old soap and water are the best choice, but hand sanitizers are a good second choice. You should wash your hands:

  • Before, during, and after cooking food
  • Before you eat
  • After you go to the bathroom
  • After you change a diaper
  • After you touch your pet, or clean up after your pet
  • After touching the trash
  • Before treating any wound

Beyond washing your hands, you should also maintain good oral and body hygiene, use disinfectants to keep your household clean, avoid coming into contact with sick people, and try to avoid getting scraped or cut.  You should also avoid undercooked or raw meat and eggs, avoid unpasteurized or raw products, and wash your fruits and vegetables really well.

Undergoing chemotherapy is uncomfortable enough without getting an infection.  Be overly observant and very, very clean and you can minimize your chances of getting infections.

Working for Yourself, Retiring with Uncle Sam: Social Security for the Self-Employed

triage-cancer-blog-self-employedAnyone who has ever worked for someone else has likely seen the Social Security deduction on their paystub (there are some employees who pay into a private retirement system). This is the tax that is automatically deducted from your pay check each pay period for Social Security retirement benefits. This money (6.2% from your employer and 6.2% from you) goes directly into the Social Security pot. We contribute now and then in retirement we receive a Social Security retirement benefit.  It’s a pretty seamless process.

But what if you’re self-employed?  If you operate a trade, business, or profession either by yourself or with a partner, you may be considered self-employed. Working for yourself can feel quite liberating, but it can be very confusing when it comes to paperwork.  Now that you’re writing the paychecks, you need to report your earnings and pay taxes to the IRS and Social Security Administration.  But how?

The simple answer is that you report your earnings for Social Security when you file your federal income tax return. If your net earnings are $400 or more in a year, you have to report your earnings on Schedule SE, in addition to the other tax forms you have to file.  And now that you’re working for yourself, you have to pay the entire 12.4% tax on up to $118,500 of your net earnings.

Don’t despair!  As a self-employed person, paying into Social Security allows you two income tax deductions.

  1. You can reduce your net earnings from self-employment by half the amount of your total Social Security tax. This means that you can take 6.2% off your net earnings (net earnings are you’re your gross earnings, minus any allowable deductions and depreciation). So if you report net earnings of $100,000, you can take $6,200 off that before you figure your Social Security tax.  This is similar to the way employees are treated under the tax laws, because the employer’s share of the Social Security tax is not considered wages to the employee.
  2. You can also deduct half of your Social Security tax on IRS Form 1040. But the deduction must be taken from your gross income in determining your adjusted gross income.

One of the benefits to paying into the Social Security retirement system in addition to having retirement benefits, is that if you are no longer able to work because of a medical condition, you may qualify for Social Security Disability Insurance.

This is an introduction to a complex topic, so we encourage you to talk to a tax or accounting professional.  You can also visit the Social Security Administration site, where they have a guide on this topic.

Congratulations on being your own boss and best of luck to you!

Are You An Unknowing Beneficiary of a Life Insurance Policy?

Shockingly, there is nearly $1 billion in unclaimed life insurance benefits out there, pexels-photo-187107according to Consumer Reports.  That means that millions of people who were supposed to receive a life insurance benefit didn’t know they were supposed to receive it and did not pursue a claim.  Thankfully, the National Association of Insurance Commissioners (NAIC) are doing something about it.

NAIC recently launched a new online tool called the Life Insurance Policy Locator.  This tool will help consumers search for possible life insurance policy or annuity proceeds anywhere in the nation.  One of the problems consumers had in the past is that they may have suspected they or a family member was the beneficiary of a life insurance policy or annuity, but didn’t have key information like the policy number or the name of the insurance company. With the Life Insurance Policy Locator you can simply start with the person’s name.  Obviously, the more information you can provide is better, but not necessary to submit a request.

This is how it works:

  • Submit a request
    • NAIC will then ask participating companies to search their records to determine whether they have a life insurance policy or annuity contract in the name of the deceased.
    • If you are a beneficiary or authorized to receive information, companies that have policy information for you will respond directly to you.
    • It may take up to 90 business days to be contacted. The insurance company may require additional information from you like a notarized death certificate and documentation of your legal authority to request or obtain information about the deceased.
    • This service is completely free.

If you think that you might be a life insurance beneficiary, it doesn’t hurt to submit a request and see if part of that $1 billion could be yours.

Important News Regarding Changes to Medicare

medicaredotgovThe new year will bring changes to Medicare.  Click here to see what Medicare will cost in 2017.

Also, if you recently became eligible for Medicare, but thought it would be less expensive to keep your Marketplace coverage because you get financial assistance to pay for your Marketplace coverage, then the rest of this message is for you. 

When you became eligible for Medicare Part A (the hospital portion of Medicare that is usually premium-free), you also became ineligible for Marketplace financial assistance. So that means you will be on the hook for the full price of the Marketplace plan. This also means that you probably missed the open enrollment period for Medicare Part B (the other part of Medicare coverage that has a premium). And, it means that if you do try to get Medicare Part B now, you will pay a late enrollment penalty for the rest of your life.  But . . .

For a limited time, you can apply for “equitable relief” that will give you a Special Enrollment Period to enroll in Part B. It also means that they won’t apply a late enrollment penalty, but you must apply by MARCH 31, 2017!

Some of you in this situation may have been notified of this program by mail. But it you weren’t notified, or lost the notice, or even feel you received misinformation about qualifying for financial assistance, you should contact the Social Security Administration (800-772-1213) to apply for the “equitable relief.”

Your application should include:

  • Any information or documentation you have on how you learned that the financial assistance would not apply and/or why you thought you could continue financial assistance.
  • Any letters (including the notice mentioned above), emails, notes from conversations
  • Or any other relevant information

And more good news – you don’t need to show that your confusion was caused by any particular source to qualify for this relief. You can just be confused.  We know health insurance is confusing!

To learn more about Making Sense of the Medicare Mazewatch our recorded webinar.

Gift Ideas for a Cancer Patient

triage-cancer-blog-gift-ideasWhen someone close to you is sick, the instinct is to shower that person with love in the form of chocolate, flowers, and balloons. This is a very kind instinct, but when someone is going through cancer treatment or in the hospital, you may need to rethink these gifts.

Chocolate and flowers each may present a possible problem for a cancer patient.  Depending on the type of cancer they have, they may have dietary restrictions, and sugar can be a forbidden ingredient.  Many hospitals are now banning flowers because of the germs and bugs they may carry. And you may want to stay away from mylar balloons, which pose a risk to power lines and there is a worldwide helium shortage.

So, what should you bring to a cancer patient? Really, anything that will bring comfort to the patient and is allowed in a hospital environment.  Here are a couple of ideas:

  • A cozy set of button-up pajamas, robe or slippers
  • Warm, fuzzy socks
  • A soft blanket
  • A basket of unscented lotions and lip balms
  • A good, funny book
  • A nice journal and pen
  • Magazines
  • Music or relaxation/meditation exercises
  • Movies, a Netflix/Amazon subscription, or an iTunes/Amazon gift card to download their own

 

You can also give the gift of your time. Besides visiting someone, you could offer to help with daily activities. For example, you could babysit young children. If their parent is in the hospital, you could take them for a walk or out to get something to eat. Pick up their mail, feed a pet, or water plants. You could even offer to help them sort their medical bills and other paperwork.

 

Use these ideas, or use them to spark your own ideas.  What every cancer patient needs more than anything is love and support, and any gift will be appreciated, because it is the thought that counts!

How to Find Legal Assistance

how-to-find-an-attorneyTriage Cancer tries to give you information to help you navigate the system without an attorney, but sometimes you may need more help.  It can be overwhelming, on top of everything else, to try and figure out where to find a reputable attorney.  Here are some tips to hopefully make things easier!

How do I find an attorney? 

There are quite a few ways, ranging from a recommendation from your Uncle Earl to certified lawyer referral services.

  • Recommendations – If you’re friendly with any lawyers, these lawyers may be able to refer you to other lawyers who have experience with your type of problem. You can also ask your friends, co-workers and employers if they know any lawyers. Business owners and professionals such as bankers, ministers, doctors, social workers and teachers might also be able to give you the name of a lawyer.
  • Certified lawyer referral services – Most state and local bar associations have lawyer referral services. With these services you can typically search by practice area and location to narrow down your options. This type of service refers potential clients to attorneys. After interviewing you, the referral service staff will match you with a lawyer who is experienced in the appropriate area of the law. There is usually a small charge for the initial consultation with a lawyer and this will vary based on service.  However, you should be informed of this fee prior to the consultation.
    • One of the benefits of using this type of service is that they may be able to provide an attorney at a reduced rate. Lawyer referral services are required to make arrangements to serve people with limited means.
    • Another benefit is that they will screen your call to determine whether you in fact have a legal claim — or need some other type of assistance. If you do need another type of assistance, the referral service can refer you to government agencies or other organizations that may be better suited to assist you.

The American Bar Association has complied all of the Lawyer Referral Programs by state.

LawHelp.org may also be a useful resource.  This website is designed to provide individuals that have lower incomes with referrals to local legal aid and public interest law offices, basic information about legal rights, court forms, self-help information, court information, and links to social service agencies.

How much will an attorney cost?

Each attorney operates different, but generally, for issues like employment discrimination or disability claims, attorney’s work on contingency. This means the attorney will get a percentage of the settlement if you win the case.  If you enter into this sort of agreement, make sure you get it in writing and that it includes, among other things, the agreed-upon percentage.

  • Employment attorneys usually work on a contingency, with no cap.
  • The maximum a disability attorney can charge, by law, is 25% of your past-due benefits for his or her services, up to a maximum of $6,000. Past due benefits is the amount owed to you based on the date the Social Security Administration rules your disability began.  If you lose your claim, the attorney gets nothing except court costs and certain other expenses – out of your pocket.
  • Legal aid agencies – Depending on your income and the nature of your legal problem, you may be able to get free or low-cost legal help in non-criminal cases from a legal services program. Check the Internet or white pages of your telephone book to see if such an organization is located in your area. A State Bar-certified lawyer referral service or local bar association may be able to refer you to a legal services program. A law school clinic may also be able to assist you.

For other types of attorneys make sure you understand what they are going to charge you and when they will expect a payment, before you sign any sort of written contract. Don’t be afraid to ask questions to ensure you understand each charge.

Also, remember that after an initial consultation, you are under no obligation to hire that attorney.  If you don’t feel comfortable with that lawyer or don’t think that they can adequacy represent you, you should keep shopping around!

It may also be the case that the attorney suggests that you first go through a governmental agency, like a state fair employment agency.  In that case, you can find the contact information for those agencies in your state at http://triagecancer.org/resources/stateresources.