Due to the nature of HBOC syndrome, despite every effort, cancer is still being diagnosed at an alarming rate. We are waging a war against our own bodies, and far too many people are losing that battle.
Those with HBOC syndrome do not have the same stuff to fight cancer, so when it is diagnosed it may tend to be aggressive. To date, there are a few targeted therapies in clinical trial, but not yet in the mainstream. There are not enough research dollars available for hereditary cancer, and until that changes, true targeted therapies are unlikely. However, of the research that is available we are learning more about what existing therapies work better than others, and the importance of stepping up protection against a recurrence. Do your own homework and ensure you have medical professionals you can trust who are up-to-date on the latest research and recommendations.
Learning that you have cancer is a very painful experience. After your diagnosis, you may feel anxious, afraid or overwhelmed and wonder how you can cope during the days ahead.
Get the Facts
Try to obtain as much information about your cancer diagnosis as you need in order to make decisions about your care. Purchase a notebook, write down your questions ahead of time and bring it to every appointment to take notes or, preferably, have a family member or friend do it. Here are some suggestions:
- What kind of cancer do I have?
- Where is the cancer?
- Has it spread?
- Can my cancer be treated?
- What other tests or procedures do I need?
- What is my prognosis?
- What are my treatment options?
- What is the past success rate with this treatment?
- How will the treatment benefit me?
- What can I expect during treatment?
- What are the side effects of the treatment?
- When should I call the doctor?
- What can I do to prevent my cancer from recurring?
Consider how much you want to know about your cancer. Some people want all the facts and details, so they can be very involved in the decision-making process. Others prefer to learn the basics and leave details and decisions to their doctors. Think about which approach works best for you. Let your health care team know what you’d prefer.
Maintain honest, two-way communication with your loved ones, doctors and others after your cancer diagnosis. If you and others express yourselves honestly, you can all gain strength from each other.
Before you begin treatment is the best time to plan for changes. Ask your doctor what changes you should anticipate. If drugs will cause hair loss, advice from image experts about clothing, makeup, wigs and hairpieces may help you feel more comfortable and attractive. Insurance often helps pay for wigs, prostheses and other adaptive devices.
Members of cancer support groups may be particularly helpful in this area and can provide tips that have helped them and others. If you would like individual or group support, contact us.
Consider how treatment will impact your daily activities. You may need to spend time in the hospital or have frequent medical appointments. If your treatment will require a leave of absence from your normal duties, make arrangements for this.
Create a Healthy Lifestyle
It has long been known that a healthy lifestyle can not only improve your energy level but support your immune system and help your body fight existing cancer. Reduce or eliminate processed foods and choose a healthy diet high in green vegetables consisting of a variety of foods. Exercise as you are able and ensure adequate rest in order to help you manage the stress and fatigue of the cancer and its treatment.
Often friends and family can run errands, provide transportation, prepare meals and help with household chores. Accepting help gives those who care about you a sense of making a contribution at a difficult time.
Also encourage your family to accept help if it’s needed. A cancer diagnosis affects the entire family and adds stress, especially to the primary caregivers. Accepting help with meals or chores from neighbors or friends can go a long way in preventing caregiver burnout.
What Else Survivors Can Do For Themselves
- Share their knowledge.
- Be their own best advocate.
- Get to know others like them.
- Get involved.
During treatment you will need all of your energy to heal. But when you are ready, you can make a difference for yourself as an HBOC syndrome carrier, for future generations and for others like you by the simple act of adding your voice to our cause. HBOC syndrome carriers need better risk reduction options, targeted treatments and a world where we are not having to fight for the funding for services, resources and research in order to do so.
Often it is not until after treatment that the trauma of everything a survivor has been through really hits home. It takes time to regain energy, deal with body issues or restrictions that treatments have created, and to sort out what the new normal will be.
- Ensure you and your doctor have a plan for follow-up medical care.
- Continue to follow a health and fitness plan.
- Find support to cope with your feelings
- Develop a plan that takes into consideration energy and physical limitations for going back to work and relating with friends and coworkers.
Young cancer survivors face many additional challenges that include relational, sexual and fertility issues. The HBOC Society is on the verge of launching a new awareness program called “Risky Genes” that is specifically geared towards the unique needs of young previvors and survivors who prefer to ‘do’ to make a difference for their future and that of subsequent generations. The program is expected to be rolled out in July 2015.
Watch this website for more information.