Whether you’ve just found out you have prostate cancer, or have been managing your prostate cancer for years, it can be a frightening, confusing experience. Who to turn to – which type of doctor should you see? How do you share with loved ones? Where can you find support and get unbiased information?

On this episode of PROSTATE PROS Dr. Scholz answers these common questions and guides listeners through what to consider when choosing a treatment team. The doctors, family, and support you have in your circle are major players in your prostate cancer journey. Set yourself up for treatment success by assembling a team that has your best interest at heart.

Dr. Scholz: Welcome to the PROSTATE PROS podcast, I’m Dr. Mark Scholz, here with my co host, Liz. We want to help guide men to treatment success so that they can become their own expert.

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Liz: OK, Dr. Scholz, this is a big topic.

Dr. Scholz: The idea of assembling an optimal treatment team.

Liz: Can we start with which kind of doctors should help?

Dr. Scholz: Yeah, that’s the easiest part. We only have a limited number of players. Everyone knows the urologist, of course, the surgeon who’s been managing this field now for 100 years. And then, in addition, just to summarize this quickly, we have radiation therapists, we have radiologists, those are the people that take the pictures, we have pathologists, the ones that look at biopsies. But that’s not the whole team. We also have family members, support groups, we have people that think they’ve been through this and they have all the answers. There’s a lot of people who get involved in this process.

Liz: Okay, so how should a new patient approach weeding out which opinions they should listen to?

Dr. Scholz: I think that’s a wonderful question because many times they don’t have all the choices you think they should. Prostate cancer is sort of a backwards industry. It’s the only type of cancer that surgeons are still in the primary care position. People say “How can this be?” All the other hundred cancers out there: breast cancer, colon cancer, lung cancer, brain cancer. They are all managed by medical oncologists, specially trained doctors that only do cancer. Urology is sort of a throwback and this is a result of a time, 40 years ago, when all cancers were managed by surgeons. There was no other treatment back then. But technology has evolved so quickly now that as we see it in 2019, prostate cancer is the only one where the surgeons are still in control. Does that mean that you have to go to a surgeon for your care? No, not necessarily. The reason that surgeons take over care is because they are the ones that do the initial biopsy. After doing the biopsy, they’re the one who have to tell the patient whether they have cancer or not. People should be aware that centers are springing up all over the country that use targeted MRI biopsies. It is possible to be evaluated now, in this modern era, for a biopsy without seeing a urologist. Who’s going to take care of you in that scenario? Anybody that you choose. You can choose a medical oncologist, a radiation therapist, or a urologist. And of course a bottom line issue will be how much experience do they have treating prostate cancer.

Liz: So, in choosing a doctor, is it important that patients get second opinions to avoid bias?

Dr. Scholz: Absolutely. The issue of course, is that most patients are going to be diagnosed by a urologist. They’ll have undergone a random biopsy and they are going to be told in many cases that surgery is the best option. Urologists are surgeons. Patients need to be bold. And they need to be willing to ruffle feathers. Doctors and patients build very intimate relationships with one another. Now, no one wants to hurt anyone’s feelings. And I’ll have to confess as a doctor that some of us have a little bit more ego than they should. But this is your life. Your quality of life and your longevity are at stake and making optimal treatment decisions is totally essential. Having the boldness to get a second opinion after a diagnosis has been made is very very prudent.

Liz: Ok, but if patients are taking the time to get a second opinion, does that affect treatment rates? Should patients be treated right away?

Dr. Scholz: I’m glad you’re touching on this because with most cancers, time is of the essence, and this is the type of things they all tend to be familiar with. We hear about the bad stories of some poor person dying of lung cancer in six months or nine months, tragedies after tragedies. But with prostate, studies have clearly shown, that a delay in treatment of six months or more, has no impact in long term outcomes. How can this be? It turns out that prostate cancer is a totally different entity from all the other cancers out there. Most people are familiar with the idea that it grows very slowly, that it doesn’t spread easily and that it’s highly curable. Precision is essential because the treatments in many cases can have more side effects than the cancer does. Second opinions, even third opinions are almost mandated to make sure that you get the best possible care.

Liz: Ok, so if a patient can’t get into a different doctor, for say, four to six weeks, does that ever cause them to rush into treatment with the original doctor?

Dr. Scholz: Yes, people get scared. That word cancer, I liken it to the word “racist.” The brain turns off and the fear kicks in when we hear these horrible, pejorative terms. And even with prostate cancer, we try to use these adjectives like it’s a mild cancer, it’s a friendly cancer, it’s a low-grade cancer. And think how ludicrous it sounds when you says something like it’s a mild racist, it’s a friendly racist. It just doesn’t compute. Everyone thinks they know what cancer is and they believe that instant action is necessary. Reeducation is essential on this. Prostate cancer is very distinct. When I first got into managing this I was trained to treat all the other cancers, but I chose prostate cancer specifically over twenty years ago. And I got into this field and I thought prostate cancer was going to be like all the other cancers. And it took me a little while to recast my thinking and understand that this is a unique type of an illness. Ralph Blum, my co-author of Invasion of the Prostate Snatchers, the book we wrote together, he said, “Mark, after all this working with you and all my years living with prostate cancer, I think we need to consider prostate cancer a chronic illness, not a cancer.”

Liz: You’re a medical oncologist, which is the type of doctor who treats all different types of cancers but you’ve specialized in prostate cancer. Is your specialty as a medical oncologist something that all men with prostate cancer will see?

Dr. Scholz: Unfortunately not. And this is actually one of the motivations for writing my book, The Key to Prostate Cancer. I realized that throughout the United States, there is less than twenty or thirty prostate oncologists. This specialty is so underserved in the medical oncology field. So, patients are going to be forced to educate themselves. 180,000 men are diagnosed with prostate cancer every year and with twenty or thirty prostate oncologists it is going to be impossible for them all to see specialists such as ourselves. But the good news is, with time and study, men can learn about the condition and become quite sophisticated. They have great resources through support groups, and they can also focus on the type that they have. This is something we haven’t covered yet, but there are many different stages and online, we’ve created a website called keytopc.com that allows people to punch in their PSA and their gleason score and find their stage. Once men know their stage, they can focus on just learning about that stage, instead of trying to become an expert at everything.

Liz: Ok, so is it a good idea that men know their stage before talking to experts?

Dr. Scholz: Yeah, one analogy I’ve used is, going in and buying a new car without doing your research and figuring out the invoice price. People that know what the dealer bought the car for are in a much more leveraged position to get the best deals. Doctors who are talking to patients who have some of the vocabulary mastered and understand their stage are going to be much more respectful, much more circumspect and much less likely to just offer what they feel is honestly in their best interest. We have a problem in prostate cancer in that surgeons want to do surgery, radiation doctors want to do radiation. They all present themselves as wanting to find the best treatment for the patient and they are certainly, I have no doubt, trying to do so. But there is a gigantic financial conflict of interest that distorts the playing field. Patients can protect themselves against this by being well educated and understanding their stage.

Liz: So this quiz is on keytopc.com and it’s just four to six easy questions and you’ll need your medical records to be able to answer them. Have you had it happen before when a patient comes into your office believing they have a different stage then they do?

Dr. Scholz: Yes, I think in the general sense, Liz, the problem is that word cancer. So, patients may have done some research and realize they have what sounds like a low grade process. A Gleason 6, we call it, the type of prostate cancer that doesn’t spread. But I really believe down deep and to the tips of their toes, they can’t really believe it’s in capable of spreading, that word ‘cancer’ has caused a poisonous root in their hearts and minds and honestly, these people come in the office with these harmless cancers and they are shaking like a leaf, they are so frightened of what we are going to tell them. They are afraid of the disease and they are afraid of the potential treatments. After talking for a while and reiterating the basic fact that there are certain types of prostate cancer that don’t spread that really shouldn’t be called cancers. They start to relax, but we’ve had patients that we’ve followed for years that are still struggling with anxiety about the possibility of these low grade cancers spreading even after they’ve been watching it for ten years. Fighting fear is a major challenge for all of us. Facts are usually the best way to counter that fear.

Liz: Do you think that weighs in to how patients tell their families about the cancer?

Dr. Scholz: Well, thanks for bringing that up, because when men have these low grade cancers and buy into the idea that they can simply watch it, and of course I’m not trying to imply that all prostate cancers are low grade, but it is very common—probably 40%-50% of prostate cancers are low grade and can be safely watched—once these people go home and talk to their families about watching cancer, imagine what the initial thought is, “my gosh, what kind of a horrible doctor is this?” or, “Gosh, Dad is going into denial, he won’t admit that he has a deadly illness.” These assumptions are logical when you compare this with say, other types of deadly cancers. I’ve counseled many patients to be very slow in revealing their diagnosis of prostate cancer to the people around them. It’s hard for me to explain prostate cancer and I have been a professional in doing this for over two decades. Imagine how hard it is for these beginner patients to try to explain to their family members that they have this condition called a cancer that doesn’t act like a cancer and that actually can be safely watched. I always counsel men, go slow in revealing the diagnosis until you are sure that it is going to help and move the situation forward. With other types of cancers of course, you’re talking about a deadly disease, you need to get a support group around you, and I would counsel people to be much more forthcoming. With prostate cancer, go slow.

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Liz: So you mentioned support groups. And there are so many great support groups and conferences like the PCRI has a mid-year conference and a yearly conference where hundreds of men with prostate cancer get together and they share and they learn from experts. And these can be great ways to not only educate the men but also educate the families. Joining a support group can be a great way to get involved with other men that have it and share you stories and maybe learn new updates or about therapy that worked for them or didn’t work for them.

Dr. Scholz: In addition, of course, one of the great things about support groups is all of these participants are seeing doctors. And word of mouth in the support groups is an excellent way to find out who the most experienced and sophisticated prostate experts are. So support groups are a wonderful resource in that sense and it’s a place where everyone has the same disease and you can be comfortable with talking about all these aspects.

Liz: Prostate cancer is a silent disease and a lot of men might feel very alone, not wanting to speak about side effects, the whole intimate aspect of the disease and support groups can be a great place to hear other men speak about that and become a little more open in your own life.

Dr. Scholz: We all need that emotional support. And that is the good side of this troublesome illness and that’s the comradery that men can get and even to draw families together. We’ve been talking and emphasizing the early stage prostate cancer, but there are of course other more advanced types that are more challenging and require seriously intense types of treatments. And that subject is a little bit like the more familiar types of cancers we’ve talked about. This whole idea about making a distinction between different types of prostate cancers is essential. When I hear someone say they have prostate cancer, it really doesn’t tell me much. Yeah, now you’re a member of a club, but what part of the club do you belong to? Are you in this harmless type or are you in a type that needs more aggressive treatment?

Liz: Prostate cancer can be slow growing or fast growing, metastatic or non-metastatic, it can be resistant to treatment, so there is a whole bunch of different kinds of prostate cancer and everything about the experience needs to be personalized, from choosing your doctor to deciding on treatment to how you tell your family. Ok, so keep listening to the PROSTATE PROS podcast, consider joining a support group, check out PCRI.org to look at the conference coming up at the beginning of September and remember that June is Men’s Health Month and if there are people in your life that aren’t getting their PSA tested, it is a great time of year to urge them to do so. It helps catch prostate cancer at an early age and it’s an important part of your yearly check-up.

Dr. Scholz: Thanks so much for listening – it’s a pleasure to be able to reach out, there’s so much to learn and I’m bubbling with ideas on how we’re going to help empower you, the listener, with the information you can use to help others.

Liz: So subscribe to PROSTATE PROS on iTunes/Apple podcasts. You can reach us at podcast@prostateoncology.com