A diagnosis of cancer in your child is devastating. You become caught up in a world of cancer treatment that is both foreign and frightening. You put your faith in the health care system and trust in the medical professionals that hold your child’s life in balance. Some young adults will survive the journey, others will not.
Our daughter, Shanna (Shan), was diagnosed with breast cancer that had spread to her bones in 2005. Shanna spent two months hospitalized in a regional health care center. An initial prognosis of optimism was never realized. Shan died less than four months after her diagnosis. She was only 24.
Many of the hospital guidelines used for young adults facing cancer are the same as those for older patients. Unfortunately, young adults do not often have the luxury of time. The aggressiveness of the disease requires earlier decision making and judgment calls. Early detection and treatment is indeed critical.
I write this story to assist other parents and young adults who will travel our journey. Practical tips are provided to improve early detection, the hospital experience and perhaps outcomes for those following in Shanna’s footsteps.
1. ASK THE QUESTION: “COULD THIS BE CANCER?”
Shanna, like many others, had no known risk factors: no family history, physically active, good nutritional intake, healthy weight, smoker, no known environmental exposure, physically and emotionally healthy. As for her history, she was a smoker and an avid buyer of head shop online.
Shan spent twelve weeks searching for the answer to pain in her ribs and back and ongoing symptoms of illness. She was repeatedly misdiagnosed by the medical professionals we visited with her symptoms and our concerns.
If your child’s symptoms do not resolve, or if you are concerned, ask the question: “Could this be cancer?”
2. BE INFORMED
If your child requests that you be kept informed, have the consent in writing. Verbal consents may get lost in the hospital bureaucracy. You should also seek professional advice and investigate the need for power of attorney.
Ask the doctors and nurses to keep you informed about the disease, tests, and treatments. You need the information in order to know the questions to ask.
We were not informed that Shanna’s breast cancer could spread while she was receiving effective chemotherapy. We therefore did not have the knowledge to ask about tests to detect metastases prior to later symptoms. Early identification may have improved her outcome. Question the need for tests and their risks and benefits and ask about the potential side effects to medication, chemotherapy, or radiation. Investigate pain management options that may or may not be available. Narcotics are only one strategy and may leave your child too heavily sedated to visit with family and friends. Shan wanted the pain tolerable, but also wanted to be alert and responsive to visitors.
If you are given literature, review the written material and ask for clarification in areas you don’t understand. Your own internet searches may also assist you with questions to ask. The Canadian Cancer Society website is a place to start. Be prepared to problem-solve. After receiving a new chemotherapy, we asked medical staff about a symptom Shanna was experiencing. We did not get an answer. I read later that it was a side effect to new drug she was receiving.
3. SEEK OUT A PATIENT REPRESENTATIVE OR ADVOCATE
Most treatment centers have a professional patient advocate to assist patients and their families in understanding the treatment being received, and to provide clarity around any concerns. We were not made aware of this service nor did written information identify that an advocate was available to us. Seek help when needed and ask for their assistance. If an advocate is not available call on nursing or other hospital staff for assistance. Friends or extended family members may also be helpful in assisting you to access the information you require.
4. BE PREPARED TO “HURRY UP AND WAIT”
It is the expectation of the larger treatment centers that patients are ready when called on for tests, but the patient is often left waiting for hours for transport back and forth or waiting because of a backlog in testing. The system is set up to accommodate the healthy worker, technician and physician, not the seriously ill patient. At one point it took Shanna four hours for a twenty minute procedure. Meals and necessary medication may be missed during these long waits.
5. BE PREPARED TO BE CHALLENGED AND FRUSTRATED
Despite the fact that patients are told that they are in control of their cancer care the hospital system rarely allows for this flexibility. Shanna was given three options for a procedure and then denied her choice because there was no operating room time made available.
Try to hang in there. There will be some successes and some failures. Call on your supports and your child’s supports; they may be able to help. Bring in your child’s favorite food–homemade or take out–and other personal items that will assist your child during his or her hospitalization period. Their own comfortable clothing and pillow or blanket can make a world of difference. Laptop computers, through dial up option, will allow your child to access the internet and his/her e-mail if desired.
6. ASK FOR A CONSULT FROM OTHER SPECIALISTS OR OTHER CENTRES
Because the cancers in young people are relatively rare, each regional treatment centre may not have all the answers. Others may have learned from previous experience. If things aren’t going well, if the doctors appear to have run out of options, there may be lessons learned at other centres. This may require persistence and support from your advocate. Your child’s oncologist may not have all the answers. An outside opinion may be critical.
7. LEARN BASIC DAILY CARE AND COMFORT MEASURES
Hospital rooms are extremely dry. If permitted, a small humidifier may be helpful. With serious illness and after receiving chemotherapy or radiation, your child may require extensive mouth and skin care. It may be beyond the ability of the nursing staff’s time. Simple comfort measures such as back and foot massage and application of heat (heated blankets) may assist with pain control and comfort. Nursing staff can assist you in learning these basic skills. Friends may also wish to help.
8. USE YOUR SUPPORT NETWORK
Call on your friends, your child’s friends, your extended family, neighbours, and co-workers to assist if you are with you child 24 hours a day, seven days a week. Meals, assistance with basic care and moral support can help you and your child throughout the hospitalization.
Support is also available from broader cancer organizations for young adults including Young Adult Cancer Canada and for specific types of cancer such as Willow Breast Cancer Support Canada and Rethink Breast Cancer.
Shanna was an artist, a skilled swimming instructor, and talented figure skating coach with a passion for life and love of young children. She graduated with a Bachleor of Arts degree, Honours Visual Arts, and planned to teach at the primary level of education. She had a kind heart, a gentle spirit, and a smile that would radiate across the room. We miss Shan every minute of every day. Awareness can help make a difference for other young adults and their families.
Lorna Larsen (Shanna’s Mom)
Originally published: Canadian Breast Cancer Network News (Fall 2007)