My Cancer: how I became an advocate too

cancer park

There is a kind of invisible cultural wall between patients and biomedical scientists like me.

This wall does not have to exist and indeed it is a negative wall as patients, scientists, doctors, agencies, and advocates can achieve far more together than apart.

But the wall is surprisingly strong.

Last year when I was diagnosed with prostate cancer, that wall was broken for me. I was suddenly both scientist and patient at the same time.

Now I am both scientist and cancer survivor.

A few days ago, I paid a visit to the UC Davis Medical Center Cancer Survivor Park (see picture above) just one block from my lab where I am a cancer and stem cell biologist. The Survivor Park features a sculpture of a maze that cancer patients and survivors have to navigate. It’s an inspiring park for me as a cancer survivor.

A few more blocks down the road is the UC Davis Medical Center Cancer Center, where I have gone for years to meetings as a scientist, and where I now also go as a patient. It is an odd feeling as some days I walk in as a patient and some days I walk in as a scientist, but I am just one person.

The way science operates, there is a strong scientific cultural expectation that scientists should stick to science. There is pressure to not publicly advocate for patients, to not advocate for our science, to not advocate for funding, and to not talk to the press. As blogs have emerged, there is the same pressure for academic scientists not to blog.

I have to admit that I have mostly followed that unwritten rule in the past. Then everything changed for me almost 14 months ago when I was diagnosed with malignant prostate cancer at the relatively young age of 42.

In an instant, I went from stem and cancer cell scientist to also be a cancer patient too. Talk about a shock.

There’s really no way to fully tell you how bad it felt, except to say my first thought was “will I get to see my kids grow up?”

Now, more than a year later after the surgery and a year after the relatively good news that the cancer apparently had not spread and a year of tests that cannot detect any cancer, I’m doing great, but there are no guarantees in life. While I feel very positive about the future, the cancer could come back and it could happen any day or never. Of course I’m hoping for the “never”.

The reality is that for all of us, no matter how much we try not to believe it, any day could be the one that we are diagnosed with cancer or some other serious disease or be in an accident that transforms our life. Or it can happen to someone we love.

In fact, it is almost inevitable that we or our loved ones will face serious illness or injury at some point in our lives. It is just a question of when. And of course scientists and doctors are not immune, nor are our families.

For almost half my life I’ve been a scientist, studying stem and cancer cells. Now as both a cancer survivor and a scientist, I have a somewhat new perspective.

I now can see things from both sides: the biomedical research side and the patient side. Goodbye invisible wall for me.

As a cancer patient as with people suffering from many other diseases, there is a mountain of painful, even horrible experiences to endure. Mortality becomes far more tangible. But, as cliche as it may sound, a horrible disease like cancer can also change one’s perspective on life for the better in certain ways. It can make you start thinking in a far more personal way about how you can make a difference for the positive.

I believe that as a scientist I can make a difference for patients through the research that I do on cancer and stem cells. However, I also feel that I can make a difference as a patient advocate/cancer survivor. Part of that is teaching and part is giving talks, but also part of that is blogging.

As a scientist, for me to do this blog you are now reading is risky, but it is important enough to me to take that risk.

Some of my colleagues do not approve of my blogging and they have bluntly told me their opinion in that regard. They honor the invisible wall between scientists and patients. They take the somewhat old-fashioned perspective that scientists outside the confines of the lab or scientific conferences, should basically keep their mouths shut.

Others tell me frankly that even though they can see the positive in academic scientists blogging, they think I am taking a risk career-wise. They worry that I might accidentally say something politically incorrect. They tell me that perhaps I might make other scientists or funding agencies mad by what I say.

Don’t I worry about that?

Yes, I do. These risks are very real and I’ve already taken some heat.

I’m sure there is also risk in my telling my story today in this blog post that I have had cancer as there can be discrimination against cancer survivors.

I take these risks with open eyes because I feel strongly that biomedical scientists such as myself need to communicate to a broad audience as patient advocates. And as a cancer survivor I have even more responsibility in that regard. More specifically, there is not enough openness about prostate cancer as well so it is important to discuss. While it is relatively rare, men in their 40s can get prostate cancer. There is a lot of controversy about the cost effectiveness of the prostate cancer blood test, called a PSA test. Should all men be given the PSA test? All I can say in that regard is that in my particular case as a man in his early 40s, the PSA test was the only reason we caught this cancer early and it may have saved my life.

My generation and younger generations of not only scientists, but also patients, students, and policy-makers view the Internet as the main conduit for communication. Blogging is a key part of that.

I believe that cell therapy and more specifically, stem cell-based cell therapy is a revolution in biomedical science. It brings more hope to everyone including cancer survivors such as myself.

Compared to facing a life-threatening cancer eye-to-eye,  a lot of things that I used to worry about, like people being cranky about a scientist being a patient advocate too, seem relatively unimportant to me. So I will go on as scientist and cancer survivor and patient advocate.

9 Comments


  1. Paul, thanks so much for telling your story. We should all be patient advocates in addition to our other jobs because nobody knows when they or their loved ones will cross the line to becoming a patient too.


    • Thanks, Amy. Everyone is a patient at times in their lives including all those of all political and religious groups, all professions, and all countries. We are all in the same boat really.


  2. Paul – Hoping for the “never” for you! Thank you for writing your blog. I work with industry in the communications area and the walls that exist between patients, companies, investors and scientists are indeed real. It is so simple to understand that sooner or later we are all patients but somehow we don’t want to talk about it! Working together – scientists, companies, investors, patients, with a common goal to advance science and better treatments seems so obvious but not enough of us are focused on making it a reality. You might be interested in these two efforts to bring us closer – The Army of Women project http://www.armyofwomen.org (same model could be applied to prostate cancer), and FasterCures http://www.fastercures.org and the PartneringforCures meeting http://www.partneringforcures.org.

    Good luck with life!

    Barbara


    • Thanks for your comment and the information and links, Barbara. I am really inspired by the way the breast cancer community has united and made a tremendous difference. I know the prostate cancer community is working toward similar goals, but we are not even close to the same level and a lot of people still do not want to talk about prostate cancer. Best wishes to you too!
      Paul


  3. Paul, thank you for this post and your excellent blogging. The world needs more scientist bloggers. I wish you continued good health!


  4. This is an important message, and I hope it will be written about again, as it is too important for a single post. Scientists must be vocal or they will be tromped on by the politicians who disagree with them.


  5. Paul, I too was diagnosed with prostate cancer at 47. It really was a smack on the side of my head. I’m now 5 years out, and my PSA level has remained undetectable. My biopsy was a 3/4 (score of 7) on the gleason scale and the pathology report was the same.
    I whole heartily agree with how it changed your outlook with regard to life. It has also made me more aware of the moment and less about where I’ll be in the future. In other words – I am only responsible for my actions/moment and let God handle to outcome/future. The PSA test also alerted my doctor to have me go for a biopsy. Since my diagnosis I have been very open about my experience with other men who are going through the same experience – regardless of their age. Thank you for your blog and honesty.


    • Thanks for your comment John and sharing your story. My Gleason was also 7, but a 4/3. I was 42 at the time this all happened. It has been tough, but has been positive in some ways. I guess sometimes good things can come from bad things.

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