Joel Nowak: How I Faced Five Primary Cancer Diagnoses

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Topics include: Patient Stories and Living Well

Thirty years ago, patient advocate Joel Nowak was diagnosed with his first cancer. Since then, Joel has received four additional primary cancer diagnoses, including advanced prostate cancer, and most recently appendiceal cancer. He joined Patient Power host Carol Preston at ASCO 2015 to discuss the new challenges he has faced in being diagnosed with a rare cancer, his work with Malecare and his advice for other people living with cancer.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Carol Preston:

Hello everyone and welcome to Patient Power.  I'm Carol Preston reporting from ASCO, the American Society of Clinical Oncology, the big cancer meeting in Chicago which attracts something like 35,000 researchers from around the globe to report on the latest treatments for cancer.  But in addition to researchers there are at least 100 patient advocates, an increasingly important part of cancer diagnosis and treatment. 

And someone who has been around for a long time is Joel Nowak.  Now, Joel, first of all, welcome, and, you know, I'm a cancer survivor myself, one diagnosis threw me on the floor.  But you know have been diagnosed with your fifth primary cancer.  That is—wow.  

Joel Nowak:

Yeah, that's correct, but I think cancer diagnoses are difficult obviously.  It affects us, it affects our lives, it affects our families.  Five affects them multiple times.  I don't really think that they've gotten easier each time, but I'm here today.  My first diagnosis was 30 years ago.  My toes wiggle in the morning, I get up, and I live my life, and I think that's what's important.  And hopefully we can get to a point where cancer, people diagnosed with cancer will all understand that, yes, it is a serious diagnosis, but in many cases it's quite livable.  We can live a long life after the diagnosis.  

Carol Preston:

And your first diagnosis, thyroid cancer 30 years ago.  Is that correct? 

Joel Nowak:

That's correct, yes. 

Carol Preston:

And you've been living with advanced prostate cancer for 10 years? 

Joel Nowak:

About 12 years, actually. 

Carol Preston:

About 12 years now. 

Joel Nowak:

Yes. 

Carol Preston:

All right.  So tell us about this latest cancer, which almost nobody's heard of.  

Joel Nowak:

Right.  I—in November of this year I was diagnosed with a cancer from the appendix called appendiceal cancer.  There's about 500 cancer, appendiceal cancer diagnoses each year in the world, so it's quite rare.  And unfortunately there [are] very little protocols for treatment purposes.  There's very little agreement, because there's been no research for the most part. 

The doctors that do treat it try to do what they think is best.  There are some similarities in treatments that they do, but one wouldn't call it a protocol.  There's a fair amount of—I don't want to say agreement.  There's more a lack of an agreement. 

Carol Preston:

So let's talk about this a little bit because obviously you have become an expert at navigating and figuring out what your cancers are, the best way to treat it, the specialists.  Specialists in many cancers have treated thousands and thousands of patients.  This cancer, not—not at all.  

Joel Nowak:

Yes.  That's absolutely true.  When I sit down with men who have cancer I always urge them to find a doctor who is very experienced, the more procedures, and we're talking 3-, 4-, 5,000 procedures, the better their outcomes are going to be.  There's a lot of really good research that shows more experience leads to better outcomes. 

But when you have a cancer that's so rare it's very difficult to find doctors that have the kind of experience that I've—would like to see.  So with this particular cancer the experienced doctors have treated 50 people as opposed to 5,000, and it's a change for me, but it's the reality, so we have to figure out how to—we have to figure out where we want to be treated and what makes the most sense for ourselves personally. 

Carol Preston:

I would think in some ways—I mean, nobody wants any kind of cancer but the fact that it was your fifth and not your first, finding out that there were—you know, a doc that maybe only treated 50 people, at least there was no panic that set in at that point.  Or was there? 

Joel Nowak:

Well, I think "panic" isn't the word, but there was a lot of upset, a lot of stress beyond—or a different type of stress than I had felt from after other diagnoses of more common cancers.  Because when I look to referrals to physicians most of the people that I asked for help from really, you know, some of them had never each heard of appendiceal cancer, and those who had heard of it didn't really know anyone who was treating it. 

So there was this great search to try to identify the, quote, experienced physicians.  And I probably identified about eight in the United States.  There may have been some that I didn't uncover, and I went on. And actually because of the rarity of the disease, I actually had five separate consults.  I always urge anyone with a diagnosis of any serious illness gets a second opinion, and there's nothing wrong with a third opinion, but I went to five, and at that point I kind of felt as though I had enough. 

Carol Preston:

But you got five different… 

Joel Nowak:

Absolutely.  I got five different…

Carol Preston:

…responses. 

Joel Nowak:

…five different opinions as to what I should do.  They ranged from basically just monitoring the cancer all the way to doing a very major piece of surgery that would have involved removing all of the organs from the peritoneal sac, taking them out, scraping them, then doing chemotherapy, intraperitoneal chemotherapy or HIPEC.  It's a heated chemotherapy process.  And then they ranged all in the middle. 

Carol Preston:

Yeah, so, but here you are 30 years later.  I think that's important to remember.  But I think it's also talk—important to talk a little bit about navigating.  You know, people hear that word "cancer."  I certainly know how I felt when I heard it.  The first reaction is, I got to get it out of me, and you as an advocate in particular with the organization Malecare have a little bit different take on that. 

Joel Nowak:

Yeah, absolutely.  I think every cancer is different, every person's body is different. And what someone—what one person who's been diagnosed with a cancer has to do or should do is not necessarily what the other person has to do or should do. 

There are many cancers that are more aggressive than other cancers.  We have to look at our age, our general health situation, and kind of make is decision that's going to—that we're going to be able to as patients be comfortable with, because we're the ones that go home with whatever the decision is.  We go home with whatever the result is.  If it's treatment with the side effects if we decide to do a surveillance, then we're the ones that have to know that we're aware, you know, that the cancer remains there. 

The goal here really is to have—my personal goal and what I think is important is to have the best quality of life that you can and also to extend your life. And sometimes there's a balance, you know, as to where you need to go on that.  And that's a very personal decision.  There's no right answer.  There's no wrong answer.  There's only the answer that you come up with by yourself with consultation with your family, even your friends, if you have trusted friends, and your doctors. 

And then you have to kind of go off and weigh all those issues yourself and decide what you're going to be comfortable with, because, as I said, you're the one that goes home with whatever the result is or isn't. 

Carol Preston:

Something that you mentioned when we chatted earlier that is very, very hard for us as cancer patients to do, and that is to take time.  Talk—talk to a little bit about that. 

Joel Nowak:

Right.  I think time, in most cases we have—I'd say in all cases we have time.  The question is some of us have more time to make a decision than others.  It depends upon the cancer and what we believe—you would believe or your doctor tells you is the aggressiveness of it. 

In my experience, the vast majority of people have time to research their disease, to talk to their support networks.  And I actually should have mentioned, you know, even finding other survivors of that cancer through support groups.  Malecare has a group of—a number of support groups, which is what we do.  We help men make their decisions as to what can't—you know, what treatment options may make sense. 

They see other survivors sitting there in the room, and these people are all alive, and the message is, yes, you have cancer, it does mean you're going to die.  I mean, I'm 30 years out from my first cancer, and I'm very much alive, and I'm enjoying my life, and that's what's really important, that having cancer does not mean your life is over. 

Having cancer does not mean you did anything evil or bad, at least I hope not because I certainly don't remember it.  Although I will say that one of my oncologists in an unthinking moment—although he's a friend, and that's probably—when he heard about this fifth cancer he said to me, oh, God, you must have been some evil person in your last life, but it was all in good humor.  But that's not the case. 

Cancer is an illness.  We get colds, we get the flu, we get stomach viruses, we get cancer.  We're living longer, and we know that as our systems get older we become more susceptible to mutations in our genetics from environmental exposures, from, you know, just normal, natural breakdowns of our genetics, and we are all going to get cancer.  And as we are going it's going—you know, we're seeing the number of cancer survivors just growing in numbers.  I think we're probably up around 10 million in the United States now, and that's an extraordinary number.  And I don't really [make] the projections, but it wouldn't surprise me if in five years from now we're at 15 million or perhaps more. 

Carol Preston:

Yeah.  I'm nine years out, and you're 30 years out.  Well, Joel Nowak, those are just excellent, excellent advice.  Malecare is the organization.  Take some time, do some research, talk to family and friends.  It's the best way to advocate.  

Joel Nowak:

Find—and find other—find other survivors.  Find out what their experiences were.  Ask them who their doctors were, especially if you have a cancer that it's not so easy to find.  That's what I did in this last cancer.  I had other survivors I was able to reach out and find a few other survivors.  Who is your doctor?  On the web I found some web pages just geared to this specific cancer, and I was able to read some people's comments and reach out to them.  Sometimes they mentioned who their doctor was, so then I would research that specific doctor, and if it was somebody I was interested in, you know, that's how I—that's how I identified my five consults. 

Carol Preston:

Well, first and foremost, it's awesome that you're here, and we'll look forward to speaking with you at future ASCOs, and keep us up to date on the advocacy work, as well as your health.  You're looking really, really wonderful, and that's the best news of all. 

I'm Carol Preston reporting from ASCO, and please remember that knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 26, 2015