Adolescents and young adults (AYA, ages 15-39) with cancer are an often-underserved group in the field of oncology. Though most people are aware that cancer can strike at any age, older patients and children are often the first thought of. The patient population is significant; each year approximately 70,000 AYA cancers are diagnosed in the US, and an estimated one million worldwide. Young adults are roughly six times more likely to be diagnosed than children under 15. The types of cancer diagnosed can be more prevalent in either the pediatric or alder adult populations. In addition, due to the age of the patient population there are additional concerns such as fertility, graduating university, and starting a family. As a result, in the past few years there has been an effort to create care centers in hospitals geared towards this age group of patients. Being diagnosed with cancer at any age is a terrible thing, and the challenges of life in AYA certainly do not help – but this is made worse by the infiltration of integrative medicine practitioners into AYA cancer care centers that have little to no evidence of their claims and serve only to provide false hope, alternative facts, and various placebos…for a price.
Young adults and CAM
The most likely user of CAM according to the NCCIH is a white, educated, older (around 50) and relatively wealthy female. This should not give the impression that they are the only users, or that use in other demographics is rare. In this regard, it is not surprising that young adults use CAM, or that in those under 18 it may be pushed on patients by parents. Though dedicated studies on the AYA group concerning CAM use are lacking, we do have approximate percentages available for the age groups. The values range from a low at 16.4% among 12 to 17 year olds, to 39.6% in 30 to 39 years olds. It should be noted that these numbers are from 2007 and that the number of integrative programs in hospitals have increased dramatically since.
Patients and parents may not have sought CAM therapies of their own accord, various “interventions” may have been directly marketed to these patients and families as an extra component or more popular today, an essential part of care to promote “wellness”. Therefore, patients that may never have thought of using any form of CAM therapies are pressured into usage through careful marketing, rebranding, and clever (to the average person) lies concerning the scientific legitimacy of proposed therapies.
Concerning the treatments used in dedicated integrative settings, they vary by center but none are unique to these programs and they have all been thoroughly analyzed on SBM and elsewhere. The treatments are either nonsense or a legitimate part of medicine that proponents try to pass off as integrative with the marketing term “holistic”. Integrated (but not integrative) care settings for AYAs hold the possibility of tremendous benefit for patients if done correctly and pseudo-medicine is excluded. There are centers that for the most part aim to do this but unfortunately there are many that utilize every bit of quackery they can get their hands on.
The good ideas
A good example of what a dedicated program for AYAs could look like is Roswell Park Cancer Institute in Buffalo, New York. The center includes a dedicated onco-fertility program which is essential when dealing with younger patients as many treatments can alter or completely destroy fertility. This can include stopping sperm production for men, and early menopause for women. Through consultations, patients can be adequately informed of these risks and can be recommended options such as sperm freezing and egg/embryo banking to facilitate future reproduction if desired. The program also employs a psychologist to help patients deal with anxiety, duress, and concerns that come with cancer at a young age. The center is also set-up to deal with long term medical issues that may arise such as relapse, secondary cancers due to initial treatment, and social factors such as returning to work or school. They also run support groups and organize events where young adults can get together outside of the clinical environment. The only place where this program seems to come up short is that they don’t seem as committed to clinical research for the age group, which is an important issue as AYA cancers are by far the most underrepresented in the field of research.
Another center that has taken similar steps is Sloan-Kettering. Fertility consultations are recommended for all new AYA patients along with a consulting center that is comprised of psychiatrists and psychologists. As a result of MSK’s status, many of them have extensive experience with AYA patients. Aside from the clinical offerings the hospital has made further efforts to make patients more comfortable by introducing several features for those in their teens and 20s. This includes a lounge that is set up specifically for the age group that includes:
- kitchen stocked with snacks
- TV with cable and movies
- art supplies and classes
- video games and tournaments
- dry-erase graffiti wall
- movie nights
- computer stations
- board games
- books and resources
- weekly programming and special events
The goal is to make younger patients feel more comfortable, and help address the social isolation from their peers that all too often can arise at that age.
This is not to say that either MSK or Roswell Park are perfect when it comes to the World of Pseudo-medicine. Roswell Park announced a trial acupuncture program in June of this year, starting in pediatrics. MSK has an integrative medicine program that includes reiki and acupuncture along with rather nebulous advice on herbalism all over their website, and they even have an app. Out of the many academic medical centers I have reviewed they sit comfortably on the lower end of the insanity scale.
This is the category that most of the centers I have reviewed fit into. They have the capability to create useful programs and in the sense of actual medicine are quite good, but have opted to promote treatments of either unknown efficacy or that are ineffective.
A prime example is the young adult program at UCLA. Rather than creating a dedicated program as part of general oncology, they opted to place the program under the Simms/Mann-UCLA Center for Integrative Oncology. The center does seem to have a psychologist and psychiatrist on staff but neither appear to be solely dedicated to the young adult program. I also wasn’t able to discern whether or not they promote integrative psychiatry or psychology practices. In fact, there seems to be nothing focused solely on young adults beyond a support group. Patients are instead steered towards meditation classes, qi gong groups, guided imagery groups, and integrative medicine consults that focus largely on dietary supplements. Not surprisingly they also sell supplements directly to patients.
Another center that focuses on the younger end of the AYA spectrum is at Columbia University (embarrassingly, my old school) through the Center for Comprehensive Wellness. Multiple treatments are offered including acupuncture, acupressure, reflexology, reiki, aromatherapy, herbalism, supplementats, and massage. Most of these are complete bunk but massage therapy may stick out. It is true that in general there is nothing really wrong with a standard massage but I would hardly call it alternative. The real problem is with some of the forms offered:
- Shiatsu – A massage system based upon the metaphysical idea of meridians and ki (Japanese version of qi essentially)
- Tui Na – A component of TCM that shiatsu is derived from, claims to balance qi (chi) flow through the manipulation of meridians that is essentially the same as shiatsu with perhaps slightly different actions
Though most of the above treatments are provided free of charge at Columbia and carry the potential for little harm (and “little” isn’t none) there are several points that are important to realize. First and most importantly, these are all meant to be provided to children and adolescents. Because of this if parents choose not to allow these charlatans to treat their children they may feel that they are not doing everything to help their child (this personally nauseates me). Second, these treatments provide nothing but false hope to parents or older children when the placebo effect kicks in. Finally, even though such services may be offered for free to patients there is still a cost, and every dollar spent on the program is a dollar that could have gone towards research or services that could truly help or possibly even cure these patients.
AYA oncology doesn’t need CAM
Though there is an enormous opportunity and necessity for programs that address the needs of AYAs in the field of oncology, this has become diluted by the influx of integrative medicine into the field. The focus of care has shifted from what could truly help such patients get through what in all likelihood will be the worst experience of their lives, to being greeted in world renowned medical centers by pseudo-scientific delusions. If you provide care for adolescents or young adults with cancer, or know anyone who is currently being treated, I urge you to think of the evidence and do what is best for them based on real evidence. As well-intentioned as some integrative medicine proponents may be, it is important that when it comes to the patient’s well-being they are nothing but “mad, bad, and dangerous to know”.