At the just concluded Uppsala Health Summit in Sweden, the Member of the Swedish Parliament Maria Weimer talked about breast cancer from the perspective of a young woman survivor, and I listened to her with utmost keenness.
At some point, I felt like she was sharing my story. I come from Kenya, a low-income country with a struggling healthcare system, and she comes from Sweden, which has an unrivaled healthcare, but as young survivors one question lingers on both our minds; what next after cancer?
Most young survivors experience long-term or late side-effects after chemotherapy or radiotherapy. In most countries, after a successful treatment, there is no long-term care plan for cancer survivors. Yet, many face infertility fears and fall into depression. They are also stigmatized as the society fails to fully integrate them in the workplace, and in some countries they find it hard to get home loans or insurances even eight years after surviving the disease.
When fatigue kicks in, we are seen as being lazy. How can one experience excessive tiredness five years after completing treatment? No one associates the random bouts of fatigue or anxiety to a previous cancer treatment. Physicians or nurses, who are in most cases the first points of contact, lack essential knowledge on likely side-effects of cancer drugs, and many survivors don’t know where to seek treatment. Do I call my oncologist years later and ask why I have persistent coughs after radioactive iodine therapy, yet I was not told that this is one of the late side-effects?
As cancer cases rise globally, so is survivorship. Some may think that survivors should consider themselves lucky and enjoy life after beating a disease that kills thousands every day, but how does a woman who has undergone mastectomy move on without proper breast prostheses which are expensive and seen as a luxury? How can survivors enjoy life if they cannot afford colostomy bags after beating colorectal cancer and are forced to use plastic bags instead? How does a young woman who is at the peak of her reproductive age live a satisfying life knowing that she is unlikely to freeze her eggs for future use and do in vitro fertilization (IVF) because these procedures that would have allowed her to get a biological child are too costly?
Patients in developed countries like Sweden are lucky though, because they can freeze their eggs for free and access up to three IVF procedures, fully funded by the government. And globally, well-informed women nowadays preserve their fertility before the cancer strikes. But in poor nations, most patients and their families have little or no knowledge and, even if they do, they cannot afford the $4,500 required to harvest and store the eggs for a few years.
In Africa, culture also influences how people seek treatment, and survivors are unlikely to discuss sexual function loss with their doctors, for instance, because it is still considered a taboo topic. And even if it is discussed, few general practitioners are equipped to treat such a side-effect.
If patients understand the post-treatment risks, if all hospitals are connected to a central electronic records system, if there is an accurate survivors’ data so as to provide free after-care, if clinicians are made aware of the late complications, it would help. For most young cancer patients, survival is not enough.
Diana Mwango is a health journalist in Kenya and a thyroid cancer survivor
You are absolutely correct. While survivorship is increasing, it comes at a price that many are not aware of. There are programs and education and support at many institutions in the United States where I live but in impoverished countries I am doubtful and not aware such programs exist.
Is it possible you could create such a program in your area and at the very least provide some education for this?
Thank you so much Virginia. I will continue creating awareness on the challenges that survivors are going through.
You are right. The problem is that no one can understand. If you are not passing through or you’ve passed through you can’t understand never.