Shining the Light on MPNs

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

This month marks the recognition of ovarian cancer, prostate cancer, childhood cancer, leukemia, lymphoma and thyroid cancer. But, did you also know that tomorrow is day of awareness and recognition for a rarer group of cancers?

Each year, about 14,500 people are diagnosed with myeloproliferative neoplasms (MPNs), a group of rare blood cancers originating in bone marrow. Tomorrow, September 11, 2014 is recognized as MPN Awareness Day. Living with a rare cancer like an MPN comes with a unique set of challenges that make raising awareness, tomorrow and every day, crucial—so that no one faces cancer alone.

What exactly is an MPN?

An MPN is a disease in which the bone marrow creates too many red blood cells, platelets or certain white blood cells, which can cause complications such as anemia, infection or fatigue as the extra cells build up in the blood and/or bone marrow.  Types of MPNs include polycythemia vera, essential thrombocythemia and primary myelofibrosis.

Challenges of living with an MPN

  • Getting an accurate diagnosis can sometimes be difficult.
  • Unlike the other types of cancers being recognized this month, few people have heard of MPNs, causing those living with this diagnosis to feel isolated
  • People living with an MPN don’t always look sick
  • Treatment for MPNs is often just to “watch and wait” or is symptom management only.

What you can do

If you are impacted by an MPN, there are several things you can do to feel empowered and live well with your diagnosis.

  • Build a support network of friends and family you can count on.
  • Communicate your emotional and physical concerns to your health care team so they can help you find support.
  • Try to stay relaxed through stress-reducing activities such as yoga, meditation, light exercise or journaling.
  • Take care of yourself by eating well, and getting plenty of sleep and exercise.

Want to learn more about this rare group of cancers and how you can help raise awareness of the challenges of living with this diagnosis? Check out this week’s episode of Frankly Speaking About Cancer, and download this fact sheet on understanding MPNs. If you or a loved one is impacted by an MPN, you’re not alone.

Take part in our MPN Awareness activities on social media during the entire month of September by following #MPNAware2014.

Posted in Cancer Advocacy | 2 Comments

Is it in the Family? The Link Between Cancer & Genetics

Do you know about the link between cancer and genetics? Perhaps you have heard the term “BRCA genes” on the news or read it in health magazines. Perhaps you have heard of women electing to have mastectomies in order to minimize their predisposition to cancer. But what exactly is the link between cancer and genetics?

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The answer begins with first understanding what genes themselves are. Genes exist in every cell in your body and serve to tell your body which proteins to make depending on the cell type and its needs. Some genes tell your body how to fix certain damages to your body, such as those due to aging, dietary factors, hormones, etc.

Sometimes genes themselves become damaged, or form mutations. When these mutations occur in the cells that are supposed to fix damages to the body, they can grow without control and cause cancer. For most people diagnosed with cancer, it is the result of a mutation that has developed over time. However, for some, this mutation is inherited from one of their biological parents, making it a hereditary cancer.

Hereditary cancers are estimated to only account for about 10% of all cancers. However, cancer is a fairly common disease, so it is possible for multiple members of a family to be diagnosed with cancer without there being a genetic link.

Hereditary cancer syndrome refers to an inherited gene mutation that increases an individual’s risk for cancer. Two of the major genes causing hereditary breast and ovarian cancer syndrome are BRCA1 and BRCA2. Other cancer syndromes include Lynch Syndrome, Hereditary Non-Polyposis Colorectal Cancer, Cowden syndrome, Peutz-Jegher syndrome, and Li-Fraumeni syndrome. The discovery of these genes has led to a new population of cancer “pre-vivors,” or individuals who are taking active measures to help control or reduce their risk of cancer. The three main methods of doing so are:

  • Chemoprevention: the use of medication to lower the risk of cancer
  • Surveillance: the use of screening tools in order to monitor any changes and catch cancer in its earliest possible stage
  • Prophylactic surgery: surgical removal or tissue or organs susceptible to cancer (such as mastectomy or hysterectomy)

Through this increased knowledge about genetic predisposition to cancer, individuals have been able to make empowered decisions for their own treatments. What is right for one person may not be right for someone else, depending on the person’s risk and his or her personal values.

For information on this topic, listen to CSC’s newest radio show Living with a High Risk of Cancer and download Frankly Speaking About Cancer: Lynch Syndrome and Frankly Speaking About Cancer: BRCA1/BRCA2 Mutations. For help navigating treatment options, check out Open to Options

Posted in Cancer Education | Leave a comment

3 tips for traveling with cancer

Middle-Aged Woman with an Inflatable RaftIf you’re living with cancer or are a caregiver to a loved one with cancer, a weekend getaway this Labor Day may not only seem frivolous, but also completely impossible! However, taking a small time out from this scary and complicated time may be exactly what the doctor ordered.

Taking a vacation doesn’t have to mean traveling a long-distance or doing any stressful or high-impact activities—the key is to relax and enjoy time away from your everyday life. If now is not the right time for you to get away, you can still plan a “staycation” and relax right where you are. Here are our top three tips for planning a safe and healthy vacation or “staycation” this Labor Day.

1. Talk to your Doctor. 

Before you head anywhere this weekend talk to your health care team to determine if now is the right time to travel away from home, if there are any special considerations you should take (such as avoiding air travel or sun exposure) and if there are any conflicts with current treatments and appointments.

2. Don’t forget medications.

Wherever you decide to go, you should pack enough medications for the length of your trip, plus a few extras in case you have unexpected delays or accidentally lose a pill. Keep a list of all emergency contacts, medications and allergies with you in case you need medical attention while you’re away from home. If you are traveling with multiple bags, you may want to make sure all your medications are in the bag most accessible to you (like your carry-on if you’re flying).

3. Plan your activities carefully.

Your vacations may not be what they once were pre-diagnosis, but that doesn’t mean they can’t still be fun for everyone. If you get tired frequently, you may want to structure your itinerary with built-in rests periodically so you don’t wear yourself out before the trip is over. If you’re unable to leave town, you can still enjoy your long weekend. Find some places near home that you haven’t been able to visit since your diagnosis. Wherever you go, remember to choose activities that won’t cause stress or anxiety—this vacation is about YOU!

For more tips on enjoying your long weekend, try out some of our relaxation techniques and stress management tips.

Posted in Living with Cancer | 1 Comment

5 ways to help a friend with cancer

This week’s blog is from our friends at MyLifeLine.org. The mission of MyLifeLine.org Cancer Foundation is to empower cancer patients and caregivers to build an online support community through free, personalized websites. MyLifeLine.org is the only personal website service that consolidates all community communication needs in one place, while focusing 100% on people affected by cancer. Research shows that increased social support during a cancer diagnosis can improve outcomes. Every day, MyLifeLine.org provides free, personal and private websites to patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

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When your friend is diagnosed with cancer, the first thing you want to do is help and the last thing you want to do is say the wrong thing. But it’s hard to know what will actually be helpful.

Just the fact that you’re willing to be a supportive friend is very important. In fact, research shows that cancer patients who have strong support communities have an increased chance at better outcomes. What does it mean to have a strong support community? It’s simply a social connection between people.

Here are some ways you can show your support and provide caring assistance, rather than feeling helpless.

  1. Stay informed about your friend’s health and well-being.
  2. Send encouraging messages and photos.
  3. Learn about your friend’s specific cancer type and treatments.
  4. Volunteer to help with meals, mowing the lawn, child care, or rides to treatment.
  5. Share a smile, send a joke or a funny image.

Managing a support community can be a difficult challenge for cancer patients and caregivers. Returning every phone call, text and request for information can be exhausting.  That’s why MyLifeLine.org Cancer Foundation provides a free tool for this purpose. We’re a nonprofit organization that encourages cancer patients and caregivers to create free, customized websites.

A patient – or a friend or family member like yourself, can create a site and invite guests to visit and participate in the online community, where updates, cancer information and encouraging messages can be centralized and tools like the helping calendar and giving angels can easily be used to coordinate volunteers and raise funds. Our ultimate goal is to help relieve the burden of communications for people affected by cancer, so they can focus on healing.

 

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Living with Cancer & Raising Teenagers: 5 Questions for Authors Marc & Maya Silver

Marc and Maya Silver.  Photo courtesy of Doug Kapustin for USA Today

Marc and Maya Silver.
Photo courtesy of Doug Kapustin for USA Today

Marc and Maya Silver, a father-daughter duo, co-wrote the book My Parent Has Cancer and It Really Sucks. When Maya’s mother was diagnosed with breast cancer, she decided to collaborate with her father to provide an all-encompassing resource for families with teens who are affected by a parent’s cancer. Their book offers reflection on their own personal experiences and insight on parenting teens when cancer has affected the family.

Marc and Maya recently shared their experiences on an episode of Frankly Speaking About Cancer. Below are a few of their responses. Click here to hear the full radio show.

1.      How may teens react differently to a parent’s cancer than children of other ages?

What we found is that teens have a much more diverse range of emotions that they experience, so it’s not just sadness and fear. It’s also guilt and misunderstanding. They want to be there for their parents, but they also want to go out and live their teenage life with friends. When they do spend time with friends, there is often guilt about not being home. The teenage years are usually a time when teens are pulling away from the family and gaining independence. The introduction of cancer into the family can often make this difficult.

2.      What are some tips you have for teens about talking to their friends about their parent’s diagnosis?

It’s kind of a tricky issue because even if you’re friends are well-intentioned, they probably don’t know the right thing to say because they lack the life experience. They may say things like “I know how you feel” or “My aunt had cancer,” which may make you feel even worse. The best advice we can give is to be direct with friends about what you need. For example, you can tell friends to not bring up your parent’s diagnosis while at school or ask them to call you every night to catch up.

3.      You mentioned that many teens will often spend a lot of time away from the home when a parent has cancer. Can you expand on why this occurs?

It doesn’t mean that the teen doesn’t care. It just means that it may be difficult for them to be around their parent when they are coping with cancer. They may find solace in leaving and spending time with friends instead of staying at home. This is essentially the opposite of another way teens cope, called “parentification.” In this situation, teens will often take on the role of a parent—doing chores around the house that they didn’t before or taking care of younger siblings as though they were a parent.

4.      How can parents help their teens when they react in one of these ways so that the family can still spend time together but still give the teen some space?

If the teens understand what you need from them, it can be very helpful. That way the teens will know exactly what helps the parents and not feel guilty spending time with friends or take on too many responsibilities. However, it’s difficult to change the ways people react, so you have to work with the situation. For some, it may help them to feel needed around the house and spend time with the parent. Either way, you can’t try to force your kids to stay home or go out with friends. The situation is different for every teen.

5.      How does the cancer experience within the family affect relationships between siblings?

Petty arguments can often define sibling relationships, especially in the teenage years. Trying to set those aside and working as a “united front” when dealing with a parent’s cancer, although difficult, can be very helpful. Siblings can try to check in with each other every day to see how they can help each other while their parent is going through treatment.

As My Parent Has Cancer and It Really Sucks demonstrates, the effects of a parent’s cancer on teenagers can be challenging. Teens react in a variety of ways, and it is often important for the lines of communication to be open with their parents to find out the best solutions, as Marc and Maya did. For tips on parenting throughout the cancer journey, click here.

Posted in Cancer Support, Inspirational Stories | Leave a comment