Aside from dealing with the emotional and physical consequences of surviving cancer, young patients also have to deal with the usual adolescent life changes. — Freepik
Dr Allison Rosenthal’s experience facing a leukaemia diagnosis while in medical school inspired her to pursue a career fighting cancer.
It also gave her insight into aspects of life with cancer for people under 40 years old.
Now, Dr Rosenthal is among the leaders of an effort at Mayo Clinic Comprehensive Cancer Center in the United States to help younger adults and older teens receive age-appropriate care and support.
“I have a very big passion and motivation to take care of our younger cancer patients,” she shares.
“These are some of the people who need the most support after treatment.”
Longer survivorship
Advances in cancer treatments have made many of the cancers most common in younger people highly treatable and often curable, Dr Rosenthal notes.
Worldwide, roughly 1.3 million people aged 15 to 39 were diagnosed with cancer in 2022 – the most recent statistics available – according to the International Agency for Research on Cancer (IARC).
The most common cancers in that age group were breast, thyroid, cervical, testicular, ovarian, blood (leukaemias and lymphomas) and colorectal cancers, IARC figures show.
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While long-term disease control or a cure is the objective, completing treatment doesn’t necessarily mean that a younger person’s experience with cancer is over, adds Dr Rosenthal.
“That means many adolescent or young adult cancer patients go on to live long lives, leaving them to navigate cancer survivorship for decades,” says the haematologist and oncologist at Mayo Clinic in Phoenix, Arizona.
“There is the emotional impact that comes along with having experienced cancer, and that can be significant as they try to move forward in life.
“And there are also the physical effects and the long-lasting impact of that.”
In addition to being a time of transition from paediatric medical care to adult care, the late teens and young adulthood typically are times of major life changes, adding challenges on top of cancer.
The adolescent and young adult cancer programme “is predicated on the idea that centring care around their unique needs improves their experience and outcomes”, Dr Rosenthal explains.
In addition to individual feedback from patients, the programme has a patient advisory council whose participants share what is important to them.
“We’ve tried to prioritise what we’re working on based on the feedback we’re getting from our patients who are in the midst of this experience,” she says.
Issues that matter
Dr Rosenthal has observed that questions on these three topics are often on the minds of patients in their late teens, 20s and 30s during and after cancer treatment:
“There are guidelines and recommendations for lifestyle choices, including exercise, but it’s a little bit hard to access those and to hold themselves accountable to pursue them,” she says.
Younger cancer survivors want to connect with peers who have cancer and find other additional support, so that they know they’re not alone.
“And when their peers move on, to feel that they aren’t left behind,” Dr Rosenthal explains.
“It’s difficult for people to navigate,” she says.
“It can be uncomfortable to ask about. It’s hard to tell their peers about.
“There’s a lot of work going into what we can proactively do to best support them.”
Fertility can be impacted by cancer and its treatment, making conversations about fertility preservation important.
Another priority for the Adolescent and Young Adult Cancer Program is advance care planning.
For older people with advanced cancers, involving palliative care earlier often helps them live longer and have a better quality of life, Dr Rosenthal notes.
That same approach could help younger patients.
“We’re working on an advance care planning project specifically for young people with advanced cancers, to empower them to have a voice when they have time to have a voice and not have that taken from them as well,” she says.
“I know there’s so much that can be done.
“Long-term outcomes, survivorship, quality of life – all of that is very important.”
The programme takes a multidisciplinary approach, including cancer specialists, social workers, health psychologists, and financial and vocational counsellors.
“We’re really fortunate that the majority of young adult patients who get cancer care are going to do well in the long term; there’s going to be a lot of long-term survivors,” Dr Rosenthal says.
“But if we aren’t paying attention to the long-term treatment side effects, quality of life, and the monitoring and maintenance of health, then we aren’t providing the full service for these patients that they really deserve.” – Mayo Clinic News Network/Tribune News Service
