Why am I finding my cancer diagnosis so late?
Mission BTB: My Ongoing Journey with Stage 4 Prostate Cancer
I am truly humbled by the overwhelming support I have received from the first blog (posted on Medium and LinkedIn), both for the well-being of my family as well as for this blog. We already had a big circle of support around us. Now, that circle just got so much bigger. This is going to make it much harder for the beast to win! Thank you all!
On with the topic of today’s blog. I live in a country that has very advanced medical care. I have excellent health insurance. My wife is a doctor and half of the people in our close social network are medical professionals. Still, my cancer finding was incidental when it was already at stage 4. How could this happen?
If one has a family history of cancer or there is a higher ethnic disposition for a specific type of cancer in one’s population, that person is going to be more susceptible due to genetic reasons. I have no family history of prostate cancer, and the Indian ethnic population has no specific higher disposition for this type of cancer. Yet here I am!
There is no definitive or specific reason why someone gets cancer. Cell mutation is happening in our body all the time, and some copies have errors in them, making them rogue cells. Supposedly everyone has some of these rogue cells at any given time, but the body is generally very smart to identify them as foreign and keep destroying them with natural processes like apoptosis and autophagy. But there are times when these rogue cells find sustainable existence in the body and a way to grow faster than the body’s natural ability to kill them — thus becoming cancer cells. Initially, they are localized in the organ where this process started, like the prostate, breast, colon, lung, etc., (stage 1–2), but if left unattended, over a period, they will find a way out of that organ and spread regionally (stage 3), and then to rest of the body (stage 4).
Cancer is best dealt with when it is localized and found early, like stages 0–2.
The more it has spread and the later the stage, it is harder, if not impossible, to get it in control and put the genie back in the bottle. I have now become comfortable openly stating that I have stage 4 cancer. But in the initial phase of my journey, I never mentioned the stage to people. I was probably trying to protect myself and others by not consciously labeling things and implying potential dire outcome, but somewhere along my journey, I became more open about it since reality is what it is and there is no hiding from it.
In the grand scheme of things, Prostate Cancer (PCa) is a common old-age cancer in men and is generally slower-growing cancer compared to other cancers. Here are some facts:
- 1 in 9 men will get PCa during their life, but
- 97% of PCa cases are diagnosed in men 50 or older, and >60% in men 65 or older
- Asians and Indians are 50% less likely to have PCa than the average population, Black people are 70% more likely
Above is a chart showing the age-wise distribution of PCa incidents on a worldwide basis, from large aggregate data of about 900k PCa patients. So, while 1 in 9 men will get PCa during their life, based on my age and ethnicity, stats are close to 1 in 6700 men, or 0.015% of the population (that’s between -3.5s to -4s for my geek friends, if it were normal distribution just for reference). At the time of my finding at 49 years, my cancer was already at stage 4, which means it got a start in my body at least a few years earlier. Even though PCa is typically considered slow-growing cancer, the specific genetic mutations that I have (CDK12, found in 6–7% of PCa cases) are more aggressive and fast-growing, so it’s hard to know when all of this might have taken seed in my body.
There are really two ways to detect something early:
- Preventive medical screening
- Symptoms identification that leads to screening dialog
Let’s talk about both issues. I cannot roll the clock back in my case, but I want my readers to understand these issues well, so they can take the right preventive steps for themselves and their families.
Medical Screening Protocols
Medical community guidelines anywhere in the world are going to be statistics-based, addressing the body of the distribution curve since the extreme tail of the curve may not provide the right Return on Investment (ROI). And these guidelines continue to change over time as well.
There are two possible ways of screening for PCa: a Digital Rectal Exam (DRE) or a blood test that measures PSA (Prostate-Specific Antigen) level. How many young men go to their doctors regularly for physical and want to get a DRE voluntarily before being told that they must? While DRE may be able to find some abnormalities, according to current medical literature, DRE has low sensitivity and specificity for detecting PCa. And about 1/3rd of the cancers that are detected with DRE are already in an advanced stage, so it’s not a great way to detect early-stage PCa.
The blood test-based PSA measure, while very simple, can have many false positives due to a wide range of physical and sexual activity, or other medical issues. The rationale for not doing the PSA test at an earlier age in men, as explained to me by doctors, is that false-positive PSA test led to undue anxiety in patients, many additional tests, and unwarranted continuous monitoring. Hence, there is no blanket recommendation to do PSA at an early age.
While the screening methods seem relatively simple, there are considerable pros and cons of these screens. Hence significant ambiguity in how and when to screen patients for PCa. If you are interested in a more detailed medical and technical discussion on the topic, check out this Screening for Prostate Cancer link at the UpToDate site.
Given this landscape, the US medical systems have gone back and forth in past decades on the age at which to start screening men for prostate cancer — ranging from 40 to 50 years of age as screening triggers. In my healthcare system, they start screening for PCa at the age of 50, unless you have a family history or ethnic disposition, where your primary care doctor will advise you to get screened at an earlier age. The official CDC (Center of Disease Control) guidelines in the US do not recommend DRE as a screening test because of a lack of evidence on the benefits, and recommend PSA testing between the age of 55–69… phew!!
Since my diagnosis, I have joined a closed Facebook group for Men under 50 diagnosed with Prostate Cancer, and I regularly see stories and posts from people even in their early-mid 40s with PCa. Prostate Cancer is the leading cause of cancer in men in the US, and 2nd leading cause of cancer in men worldwide, and we are still lacking strong early detection protocols! This is not great news.
Community guidelines are built on statistical mortality benefit analysis at a large population level. But at the end of the day, we are individuals and not statistics — we need to take control of our health through awareness and proactive dialog with our medical care professionals to make the best and timely choices for ourselves.
Symptoms Awareness and Identification
Given the lack of history and encounter with PCa in my family and personal network, and at my age, frankly, I was not aware of symptoms associated with it. It was just not on my radar screen of things to watch out for. As later scans would show, my prostate was not specifically enlarged as it may be in most cases of PCa diagnosis, especially in older men. In retrospect, I feel there were some sporadic signs of urinary pattern changes in the year before my diagnosis. But they were not serious or frequent enough that I could not ascribe to drinking too much coffee or middle age (my late 40s). So, I did not even discuss them with my physician wife, let alone think of talking to my PCP about it.
The real challenge is that men don’t like to talk about this stuff either and most men around my age just go to the doctors with targeted specific major issues. A couple of weeks after my diagnosis, 3 of my buddies took me out for a dinner to just chill and see how I was coping. All 3 of them are doctors (2 specialists and a primary care doc), and 3–5 years older than I am. None of them had their own DRE or PSA screening done and acknowledged they don’t like to go to the doctors unless it’s for a specific issue.
When I contrast the awareness related to breast cancer and self-exam guidelines that are very commonly talked about in younger women, PCa awareness in young men is generally lacking. As Monika and I tried to analyze my pre-diagnosis symptoms later, it was NOT obvious that this would have raised a big red flag leading to additional testing and finding, but it was a moot point anyway and we did not want to harp on “what-if” scenarios.
Nevertheless, the best way of knowing that I was harboring PCa in my body for at least a few years before my incidental finding might have been my self-awareness of symptoms and open willingness to talk about it with someone.
That’s my message to the readers… systems around us will always be imperfect, and they will ignore the statistical tail. We must own our own well-being! Here is a simple rule that I suggest — on every 5-year birth marker, start becoming aware of the diseases and health issues that could rear their ugly head 5–15 years down the line. As an example, when you turn 40, talk to your doctor about health risks and associated symptoms for the 45–60 age bracket for your specific background, and keep up this process. Get a physical exam every year and use that opportunity to stay current with screening recommendations and keep future potential issues on your radar screen. And of course, understand preventive best practices for those risk factors.
Part of owning our own well-being is developing an intuitive intelligence about our body… being able to understand subtle changes in our body and raising a timely alarm. This is not easy or simple, but it starts with the mindset, “I own listening to my body in a conscious and continuous manner.” The medical system is there to support you and is a partner or a joint owner at best in keeping you healthy and in the early identification of any disease. In western cultures, there seems to be an over-reliance on the medical system for this vs. more traditional eastern cultures. Is it because it’s easy to just blame someone else for your problems?
So let me recap:
- Have a regular dialog with your medical professional about diseases and health issues that one can encounter in the future years
- Be educated and aware of symptoms and self-identification methods related to these diseases. Drive preventive lifestyle changes and sharpen your intuitive sense to listen to the body for any early indicator
- Be compliant in getting physicals and any routine recommended testing. Most people are very lax about this since they think it won’t happen to them
There is bravery in dealing with any life-threatening crisis, but I would say there is even higher bravado in having uncomfortable personal health conversations that might subvert the crisis, to begin with.
Listen up, men and women!
How did I navigate personal and professional life along with radiation and chemotherapy treatment in the first phase of this journey? In the next blog, I’ll reflect on what we did as a couple and family to navigate this and create a support system around us in those early months. I’ll share how the treatment went, creating a very short-lived valley of hope for normal life before cancer started to rise again, reminding us of the nature of the beast we were dealing with.
Additional Resources:
- Cancer.net: https://www.cancer.net/cancer-types/prostate-cancer/introduction
- Screening for Prostate Cancer: https://www.uptodate.com/contents/screening-for-prostate-cancer
- Common Cancer Types: https://www.cancer.gov/types/common-cancers
- Cancer Deaths in the United States: https://www.cdc.gov/cancer/dcpc/research/update-on-cancer-deaths/index.htm
- Prostate Cancer Foundation: https://www.pcf.org/
