For the patient living with metastatic cancer, learning to live with uncertainty is a daily commitment and your attitude and actions can determine the impact that this uncertainty will have on you.
New treatments, such as targeted therapies and immunotherapies, have led to a real transformation in survivorship and outcomes. People can stay on these treatments for many years, which means they survive for longer. People live with advanced or metastatic cancer for many years depending on the cancer and treatment options available previously. It was mostly breast cancer patients that had this third- and fourth-line treatment option available but now they are also available for lung, gastrointestinal, kidney, NETs and melanoma cancer.
The growing population of people living with advanced or metastatic cancer has raised questions about the unique needs of these individuals and how to improve their care.
Much research is being done regarding the unique needs and the goal is to encourage a new field of research to better support and address their care needs. Issues like psychosocial challenges they face, long-term side effects and their management, financial support, and communication around the goals of care are some themes that are emerging.
The fact is that people with advanced or metastatic cancer might require treatment for the disease indefinitely, or they might be on and off treatment for the rest of their lives. They will also likely undergo regular testing to identify signs of recurrence and to monitor treatment effectiveness.
The psychosocial impact of uncertainty
- The stress that often accompanies the routine imaging scans is called scanxiety. This is a real issue for many, if not experienced by all cancer patients. It’s natural to feel anxious when you’re waiting for an important test result, and, in fact, there is no way round it, you have to go through it again and again. The reality is, it is and remains to be a huge challenge.
- Providing patients with information they can understand about their diagnosis and treatment is one way that we can lessen anxiety and empower patients with coping skills. We know that when patients have accurate information, they are better prepared and make more appropriate decisions about the future.
- It’s of great importance that healthcare professionals have truthful open conversations regarding the possible treatment outcome. If cure isn’t the intent, there has to be clarity of the benefit that the proposed treatment will have and what the side effects and other hidden costs will be.
- It’s of great importance that false hope isn’t encouraged, and realistic planning of the way forward should be part of an advanced illness discussion with the treating doctor and palliative care team.
- Although palliative care is gaining more acceptance within the oncology community, we often still find that patients are referred very late and then the emotional preparation for end of life becomes pressurised and there’s little time to process emotions, to create meaning-making rituals and assist patients to come to terms with their own mortality. This is a difficult process but to facilitate healing on an emotional and spiritual level, it’s a necessity to ensure that patients have time and guidance they need when they start metastatic treatment regimes. We still live in a society where death is seen as a failure, where in fact, we all going to die, and no one is going to get out of this world alive.
Live until we die and don’t die while you’re living
My philosophy is “Live until we die and don’t die while you’re living.” This is an attitude that has to be cultivated and worked at by the patient and the family, and when they embrace life and set new goals and make major changes in their life after cancer they begin to manage the uncertainty that advanced cancer brings differently.
The diagnosis of cancer gives you a second chance to review the path you’re on and you can choose to grab it and change the direction of your life to reflect your values and dreams that you still have for your life ahead. You can make your life count and you can live with a deeper joy and meaning if you choose to dig deep and face the reality of your illness and how it impacts you.
You’ll then be able to discern when your goals of real quality of life aren’t met anymore and then you’ll stop treatment and start to prepare for a new phase of your life, that we all have to face at some time.
The importance of challenging yourself to set goals to learn to manage your emotions and fears in a manner that will enable you to still live with joy and meaning is hard work. Uncertainty can teach you to adapt or it can destroy your life in a profound way. Please do watch the TED Talk on How to make stress your friend.
The Dalai Lama once said, “The enemy is a very good teacher.” May you find the wisdom and inner resources to learn to live differently with your metastatic cancer and don’t let it steal your life.
Resources to ponder
https://ideas.ted.com/7-strategies-to-help-you-live-with-uncertainty/
https://www.self.com/story/living-with-uncertainty-tips/amp
https://www.youthdynamics.org/13-quotes-on-living-with-uncertainty/
https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-metastatic-cancer
https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-uncertainty
https://www.cancer.net/coping-with-cancer/managing-emotions
https://www.cancer.gov/news-events/cancer-currents-blog/2021/living-with-metastatic-cancer
MEET THE EXPERT – Linda Greef
Linda Greef is a masters level oncology social worker, with over 30 years’ experience. Being an ovarian cancer survivor directed her specialising in oncology social work. She has a private practice in Cape Town and serves as Chairperson of The Cancer Alliance.
This article is sponsored by Novartis in the interest of education, awareness and support. The content and opinions expressed are entirely of the healthcare expert and not influenced by Novartis in any way.
Header image by Adocbe Stock