We can conduct research on any topic at any time from almost any place on the planet.   Look at my circumstances. After getting my diagnosis in February 2017, I was on a boat in Antarctica. Even there, I had access to all the world-wide-web had to offer.   This incredible capability can be both good and bad, as I personally experienced, especially during the period between initial diagnosis and the scans, exams and testing necessary to truly understand the extent and nature of your cancer. The challenge is that the amount of data out there is overwhelming, and there is a risk of becoming confused, stressed and – in some cases – more fearful than you need to be.

As I shared in earlier posts, I had been very deliberate in determining how I would approach my cancer journey, and my overall attitude was relatively positive. But, that didn’t limit my curiosity and desire for information. As I stated in one of my principles, I viewed knowledge as power. So many questions filled my head. I wanted to know what I could expect down the road. I wanted to learn about the experiences of others.   I wanted to find out what my treatment options would be. I wanted to know what my chances were for beating this cancer.  And if I beat it, I wanted to understand the likely long-term limitations and consequences, both from the cancer itself and the side effects of treatment.

Seeking answers for these questions is so much different when it concerns your own life than when you are conducting academic or general interest research.   And in this context, the internet is both wonderful and awful at the same time.

Cancer Survival Rates

What would be your top-of-mind question after receiving a cancer diagnosis?   I found that I really wanted to understand the odds of surviving. After “diagnosis” you naturally want to understand your “prognosis”. You want to know whether the cancer will likely be the thing that leads to your death.   And this takes you into the world of statistics and cancer survival rates.

How many people live their lives through the lens of statistics? You’d be right if you answered “not many”. If they did they would probably be making lots of changes. Yet, when disease hits – especially cancer – statistics suddenly take on a high level of importance to almost everyone. This is especially true in the early days when you are processing the new information.

Cancer survival rates tell you the percentage of people who survive a certain type of cancer for a specific amount of time. Five years is the most common period used to calculate survival rate.  Survival rates are portrayed as percentages and are provided for individual categories of cancer. For example, the five-year survival rate for male prostate cancer is 88 percent. That means that of all men diagnosed with prostate cancer, 88 of every 100 are living five years after diagnosis. It also means that 12 out of every 100 are dead within five years of a prostate cancer diagnosis.

You will typically see the word “overall” when viewing cancer survival rates. This is an important modifier. It generally means that the data includes people that have received treatment and those who have not. And it includes various treatment regimes. An overall rate includes people with early stage diagnoses and late stage diagnoses. And so you must look at the survival rate numbers with care. My strong recommendation is that you not place too much emphasis on these statistics. Use them for general information and background. Depending on your diagnosis, the survival rate data might give you comfort and optimism, or they might lead to increased worry, fear or stress. Remember, every person is unique; each person has their own personal cancer journey. There are so many factors that can and do influence the data that go into the survival rate percentages. And there are so many factors that influence the journey of each individual.

If you would like to learn more about cancer survival rates, the Mayo Clinic has a good on-line explanation of what they are and how to use them. Check out:

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517

I do very much agree with the Mayo Clinic’s suggestion that survival rate data can be useful in evaluating treatment options.

“Statistics can also show how people with your same cancer type and stage respond to treatment. You can use this information, along with your goals for treatment, to weigh the pros and cons of each treatment option.  For instance, if two treatments give you similar chances for remission, but one has more side effects, you might choose the option with fewer side effects.”

Survivors’ Quality of Life

After survivability, the next area of questioning that I focused on had to with quality of life, assuming I beat the cancer. In other words, I wanted to know about the long-term effects of the cancer and the treatment options. What would my life be like on the other side of successful treatment? Would I be able to talk? Would I have pain? Would I be limited in what I would be able eat or drink? Would I be on medication for the rest of my life? Would I always be living in the shadow of cancer, and the potential or even the likelihood of cancer returning?

As I pondered these and similar questions, I thought about the effects not only on my activities but more broadly on me as a person. If I lost my voice permanently, would I still be me? What would it be like to not be able to communicate verbally? (Those who know me well will appreciate the significance for me of this area of questioning.)

So when you start to search on the long-term effects of cancer and of treatment regimes, you will find two large categories of information. First, there is the medical and academic research. Second, there are the personal stories and posts of individuals who are on their own journeys.  Both are useful. Both are sobering.  Both need to be used carefully.

The medical and academic research is typically put forth in a sterile, matter-of-fact manner. Similar to the cancer survival rate data, it is not always easy to understand the interplay of multiple factors. But this category of information is useful in understanding the types of things that can and do happen some of the time. Preparing yourself for what you might encounter along the journey is a good thing to do. It is so much better than being surprised later. I used this information to help to evaluate treatment options. I also used it to determine if there were preventive actions that could be taken along the way to reduce the probability or severity of long-term effects.

The anecdotes, posts and discussions of and among cancer survivors are potentially powerful resources. There are many sites and there are many participants online. When I first found these sites and started to read the posts and discussion, I was initially taken aback as I first observed a decidedly negative picture of long-term consequences and effects.   Ugh, I thought.   But I stepped back and thought about the context. These sites primarily provided an opportunity to share tips, tricks and experiences with others who going through difficult portions of their journeys. They were not the most likely place to read the most positive stories or about survivors who had gotten successfully through treatment and recovery with minimal long-term effects. There might be some very positive and uplifting stories, but they were not a large part of the total. And so it is important to view this body of information as a tool that can be helpful when seeking ways to deal with certain symptoms or conditions. Also, these sites are places to contribute your own experiences, with the primary intention to be of help to others.

As I reflected on the above, I realized that it was not surprising.   On the cancer survivor sites it is ok and desirable to talk about the challenges and what could be done about them. Interestingly, this is opposite of most social media, where participants are more likely to focus almost exclusively on the positive things in their lives.

Final Thought

Researching your cancer and learning what to expect is important and necessary. It is useful to understand the experiences of others and to obtain data that can help evaluate treatment options. And it is valuable in identifying and selecting steps that can be taken to mitigate side effects of treatments and prevent or reduce long-term effects. But take care to not drown in the data, and avoid becoming addicted to continuously searching for more. Remember, effectively navigating this very different journey is mostly about you and how you approach it mentally, emotionally, physically and spiritually.

TTFN

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