A cancer diagnosis shakes up your life and the lives of your family in ways you might never expect. The diagnosis looms like the "elephant in the room" – an age-old expression used to describe something big that everyone is aware of but no one wants to talk about.
Simple Talk for Tough Times can help you talk with the children in your life about a cancer diagnosis and help them cope with the enormous changes cancer often brings.
In addition to general advice and suggestions, Simple Talk for Tough Times explores each phase of childhood development. Each section offers age-appropriate ideas for what to say, what to do and what to observe when talking with children about cancer.
Cancer casts one's life into a constant state of the unknown. The second section explores how you and your child can face these uncertainties together. It includes talking points organized by childhood developmental age groups.
A physical medicine and rehabilitation doctor and a nurse practitioner specializing in cancer care will assess how cancer is affecting your ability to do normal daily activities, work or exercise. After cancer treatment, they will work with you to restore those abilities.
A genetic counselor is a special trained medical professional whose function, in the cancer realm, is to try to help individuals and families clarify what their risk for cancers are. In light of those risks, families partner with their physicians to try to get a plan in place, a management plan, that fits that individuals risks and if genetic testing is indicated to help in that regard to help them make an informed decision about genetic testing.
Those tests are complex. The results are sometimes difficult to understand, and we are specially trained to help both the physician and the patient understand the ramifications of the test result as well as the limits of the test and what it means for them and their families.
A man or woman who has been diagnosed with cancer, they sometimes will say, "Why do I need to see a person in genetics, I have cancer what difference does it make to me?" Or "I might not have kids."
If we can figure out the underlying reason for the cancer and if there's a reason to suspect it might have a genetic piece to it or an inherited piece to it, it may help their physicians to choose a better treatment. It also may give us guidance as to how to best screen them to perhaps prevent another cancer from occurring or diagnose it early.
For an individual who has a family history of breast cancer, they're often very concerned. What's the chance this is going to happen to me? Should I get a genetic test? Will that tell me? And the genetic counselor is in the perfect position to help assess the risk.
For some of our colon cancer patients, we need to start them at 20 instead of 50 and maybe do them every year instead of every 5 or 10 years. So we want to make sure that the right people are screened and that people who don't need to be don't have excessive screenings.
We haven't found all the genes that cause cancer. So genetic counseling does not always equal genetic testing. People can be high risk even if they've had a normal gene test. So genetic counseling's about clarifying risks and making informed choices.
Virginia Piper has really started the forefront of promoting genetics as a component of cancer services.
We try across the whole system of Virginia Piper Cancer Institute, to be sure that the physicians and the nurse coordinators and every cancer patient at Virginia Piper Cancer Institute should have a nurse coordinator help guide their care, is aware of the little ticklers of what is it about a patients personal diagnosis or family history says they may benefit from seeing a genetic counselor.
We've done a really good job at the Virginia Piper Cancer Institute of having genetics a part of all the tumor conferences and so when issues come up that we can remind the providers that this needs to be thought of. And so that the patient and their family is aware that this service is available.
We have genetic counselors at all of the major metro hospitals. We also have it at some regional hospitals.
Because access is so important and we want to be sure people do have access, we've begun a tele-health on genetic counseling to some of the out state regions so that people can stay in their own communities and get this service. It's about screening, prevention. That would be great to put oncologists out of business.
Cancer genetic counseling: How it can help you and your family
If you or a close relative has had cancer, you may be concerned about your risk for a future cancer and what you can do to reduce that risk. A close relative is a parent, brother, sister, child, aunt, uncle, niece, nephew or grandparent.
You may wonder if your children or other relatives are at risk. You may also wonder if genetic testing is right for you.
Genetic counseling can help answer your questions.
A genetic counselor is a nationally certified health care provider. He or she can:
interpret complex family histories
educate about cancers that run in families (known as inherited or genetic cancer)
talk about risks and prevention
help patients and families make informed decisions about genetic testing and help interpret test results.
Not everyone with a personal or family history of cancer will benefit from a genetic test. Meeting with a genetic counselor does not mean that you will have a genetic test. You may learn more about the testing options and if they are right for you.
Not all genes linked to cancer risk have been identified. Before you have a genetic test, you want know:
that the correct test is being done
how valid the test results are
what your next steps are when you receive the results.
A genetic counselor will help answer these questions and help you make decisions that are right for you.
Genetic testing is usually done with a saliva (spit) or a blood test.
These tests are usually covered by insurance. Check with your insurance provider to see if your insurance will cover genetic testing or if prior authorization is needed. A genetic counselor may be able to help with this.
There may be a room charge or other fee from your clinic. The fee is not billed under the genetic counselor's name but under the health care provider who referred you for genetic counseling, or from a clinic doctor.
Check with your insurance provider to see if your insurance will cover this service.
hospitals and clinics in greater Minnesota, 612-863-0228.
American Cancer Society services
We work with the American Cancer Society to bring their services to you and your family. For more about American Cancer Society services, call 1-800-227-2345 (1-866-228-4327 for TTY for the hearing impaired) or visit cancer.org.
A licensed cosmetologist teaches people with cancer ways to enhance their appearance and self-image during chemotherapy and radiation therapy. Allina Health locations in Minnesota include Coon Rapids, Fridley, Minneapolis, St. Paul and Shakopee. Allina Health also offers the service in River Falls, Wisconsin.
TheCancer Survivor Wellness Program is a series of classes is for people whose lives have been affected by cancer. You will have the opportunity to learn new ways to enhance and support your health throughout your cancer treatment and beyond.
American Cancer Society Hope Lodges offer cancer patients and their families a free, temporary place to stay when their best hope for effective treatment may be in another city. To find a Hope Lodge and to learn more about a specific facility, please visit that location's page at cancer.org, or call the American Cancer Society toll free anytime, day or night, at 1-800-ACS-2345.
Nurse coordinators: Cancer support every step of the way
Melanie Hartman with her cancer nurse coordinator, Jill May, RN.
In August 2011, Melanie Hartman was told she had neuroendocrine carcinoma, a rare form of cancer with no known cure. Just 40 years old at the time, Hartman said her world stopped upon hearing the diagnosis.
"When you are told you have cancer, you don't even know what questions to ask," she said. "But the longer you live with the diagnosis, the more information you want."
Since her diagnosis, Hartman has learned as much as she can about her cancer and treatment options. Fortunately, she is not doing it alone.
Her cancer nurse coordinator serves as a constant source of information, support and strength.
"I tell patients their cancer diagnosis is like being thrown on a roller coaster without a seat belt. I am their seat belt. I am there to keep them in the car, on the track and moving forward," said Jill May, RN, Hartman's nurse coordinator.
In addition to providing shoulders to lean on, cancer nurse coordinators help inform patients about their options, schedule appointments, provide access to resources within the community and coordinate patients' care.
"I'm very fortunate in terms of all the care I have received through this process," Hartman said. "When you go through this, it's nice to know that someone has your back. Jill will call me out of the blue just to check in
and see how I am doing."
In the right place
The first time the two met, May was wearing the zebra-patterned awareness ribbon that represents Hartman's rare form of cancer. Hartman took that as a sign that she was on the right track.
"When I saw her, I knew I was in the right place," Hartman said. "I have never felt like a number. In my world, I'm not a number. I am a mother, a wife and a businessperson. It's nice to be validated."
May said helping people like Hartman navigate their treatment is what she was meant to do. "It can be overwhelming, but every day is a day of survivorship. I want my patients to understand that I am here for them."