The Inside Scoop

There are so many things cancer patients wish they had known when they first heard their diagnoses. Many doctors try to lay things out the best they can in the beginning, while others are more circumspect, sharing minimal information and waiting for patient questions, which may not ever come. Regardless of what the doctor says, our brains are flooded with stress hormones when we hear “you’ve got cancer,” making it hard to take in a lot of information and leaving most of us wishing we knew more. Some of the most common things patients wish they had known include:

…That it Would Be So Hard

While many patients are pleasantly surprised that they don’t wretch from chemo as depicted in countless movies and cancer lore, most are surprised at the relentless fatigue and emotional exhaustion brought on by cancer and its treatment, as well as the stress of dealing with a life-threatening disease. And it just goes on and on. Whether treatment includes surgery, chemo, radiation or immunotherapy, patients often feel depleted by it all and struggle to find the strength to return for more, particularly as the side effects begin to mount. 

…That I Would Find the Strength to Do it

And yet they do. Whether it comes with the conviction that of course I will do it, or a slow realization that bit by bit I have done it, patients often surprise themselves with their own ability to meet the challenges that come with the diagnosis. The instinct to survive is stronger than we imagine, and we often find ourselves saying, “Of course I did it. What choice did I have?” Even when we struggle to recognize ourselves in the mirror or in the mind, somehow we find the strength to do what we need to do to get through it all, so long as there is some hope for the future.

…That the Side Effects Would Linger 

Chemobrain, fatigue, emotional drain, neuropathy, lymphedema, sexual issues. These side effects are not uncommon, and can persist for a year or more after treatment ends, extending the suffering for so many patients. Some doctors do tell us what to expect, but in the stress of the diagnosis, we fail to hear or retain the information. Other doctors don’t mention side effects in fear that they will overwhelm us, or pre-dispose us to experiencing symptoms by mentioning them in advance. Still others overlook the need to alert us in their single-minded focus on getting rid of the cancer. Whatever the reason, often we don’t know to anticipate these side effects, or that they will persist long after treatment has ended. And yet, many patients feel they could have prepared themselves better—both practically and emotionally—if they had only known.

…That it Might Come Back (Again and Again)

After treatment, many patients hear that they have been cured. But often, what the doctor really meant is that there is no detectable sign of cancer. While hearing that the cancer is gone forever can be a tremendous relief, given the propensity of some cancers to come back, and the increased risk of a second primary cancer that many patients carry, the reality may be very different. Even after having crossed that magical 5-year mark—which is not actually so magical—the cancer might recur. When unprepared for this possibility, patients feel angry, betrayed and demoralized, making it harder to face the next set of challenges. For many, the biggest hurdle is making the mental shift to this new reality. But once they began to think of their cancers as chronic or likely to recur, it helped them manage expectations and themselves.

…That There is so Much Support Available

Whether it is pain management, transportation, financial aid or emotional support, so much assistance is available from hospitals, cancer centers, general and specialty cancer support organizations and online. Unfortunately, we often don’t know it exists when we need it most, only hearing about it after the fact.

Some doctors are great and offer support long before we know we need it. But others are so focused on treating the cancer they fail to see us as people with a complex set of needs. Still others will share information about support resources on a need-to-know basis or in response to specific questions asked. But if we are trying to be strong and put up a brave front, our doctors may not be aware of our underlying needs, and we may not discover the resources available until long after the fact. Many patients discover that a conversation with a nurse or social worker opens all sorts of doors, and the information and support start to flow. 

What do you wish someone had told you when you were diagnosed? Email me at and tell me what you wish you had known.

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