Joel Nowak and Shane Norris discuss his unusual Covid Pandemic Journey with a new prostate cancer diagnosis. Shane, a well-respected music producer and gig worker, joined with other New Orleans artists to raise funds for out-of-work musicians. As he began to create a fund raising vehicle he was diagnosed with prostate cancer.
Shane shares the experience he had navigating the Covid pandemic as he searched for the prostate cancer treatment that he felt best suited his needs. With financial support raised from a GO-Fund-Me project as well as help and guidance from a number of resources, including medical professionals, family and friends, Shane decided to become the first man in Louisiana to treat his prostate cancer with high intensity focused ultrasound – or HIFU.
Despite Shane having to learn about prostate cancer and potential treatments and their possible side effects, in the middle of a pandemic, he and his colleagues managed to raise and distribute $400,000 to out-of-work New Orleans artists.
Some Important Additional Information:
1- High Intensity Focal Ultrasound (HIFU) currently has a CPT code, and is covered by Medicare, with a deductible. HIFU is also covered by some private insurance carriers for both initial treatment and as a salvage therapy. Please check with your insurance carrier (Medicare and private carriers) to confirm your specific coverages. With the CPT code urology practices can now submit claims to private insurers which are evaluated for reimbursement on a case by case basis.
2- Shane's personal experience with side effects from his HIFU treatment does not guarantee that others having HIFU will have the same experience. Following HIFU patients may be required to have a catheter inserted for 3 to 7 days. The risk of having the more common side effects of urinary incontinence and sexual dysfunction seen in treating the entire gland are minimized due to HIFU's targeted nature of tumor ablation.
Cancer ABCs would like to thank its podcast sponsors for their support of this podcast program. Our sponsors include:
Joel Nowak and Shane Norris discuss his unusual Covid Pandemic Journey with a new prostate cancer diagnosis. Shane, a well-respected music producer and gig worker, joined with other New Orleans artists to raise funds for out-of-work musicians. As he began to create a fund raising vehicle he was diagnosed with prostate cancer.
Shane shares the experience he had navigating the Covid pandemic as he searched for the prostate cancer treatment that he felt best suited his needs. With financial support raised from a GO-Fund-Me project as well as help and guidance from a number of resources, including medical professionals, family and friends, Shane decided to become the first man in Louisiana to treat his prostate cancer with high intensity focused ultrasound – or HIFU.
Despite Shane having to learn about prostate cancer and potential treatments and their possible side effects, in the middle of a pandemic, he and his colleagues managed to raise and distribute $400,000 to out-of-work New Orleans artists.
Some Important Additional Information:
1- High Intensity Focal Ultrasound (HIFU) currently has a CPT code, and is covered by Medicare, with a deductible. HIFU is also covered by some private insurance carriers for both initial treatment and as a salvage therapy. Please check with your insurance carrier (Medicare and private carriers) to confirm your specific coverages. With the CPT code urology practices can now submit claims to private insurers which are evaluated for reimbursement on a case by case basis.
2- Shane's personal experience with side effects from his HIFU treatment does not guarantee that others having HIFU will have the same experience. Following HIFU patients may be required to have a catheter inserted for 3 to 7 days. The risk of having the more common side effects of urinary incontinence and sexual dysfunction seen in treating the entire gland are minimized due to HIFU's targeted nature of tumor ablation.
Cancer ABCs would like to thank its podcast sponsors for their support of this podcast program. Our sponsors include:
Shane Norris:
One friend waited too long and he's in a lot of trouble. Again, I cannot emphasize this more to stay on top of this as a man. Eighty percent of men have some prostate issues before they die. You're going to get it. Stay on top of this man. Keep yourself alive and you live for a long, long time. If you screw up and procrastinate, it's going to hurt and it's going to be miserable. I don't want to see anybody go through that ever.
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Joel Nowak:
Hi. This is Joel Nowak for Cancer ABCs. Today, I'll be speaking with Mr. Shane Norris who lives in New Orleans and works as a music producer. Mr. Norris was diagnosed with prostate cancer during the COVID-19 pandemic. He decided to seek treatment using Focal Laser HIFU Ablation as opposed to the more commonly used methods of either surgical removal or the radiation of his entire prostate gland.
Shane, first, I want to thank you for joining me. I think your story is most interesting and a little different. First, I would really love it if you would please share with us what it was like to be diagnosed with prostate cancer during the COVID pandemic. I'm sure that you faced a number of extra barriers, given the fact that we're in the middle of the pandemic, or I think we were starting to move into the pandemic. So if you could share some of those barriers, how you overcame them, and how you explored your treatment options, and then actually made your treatment decision.
Shane Norris:
Absolutely. Good morning, Joel. Thank you for having me on your podcast. I've actually been looking forward to this, to speaking to you about this. Yeah, like you said, there was a pandemic, we had to shut down in March. There was a group of filmmakers, there's three of us got together and decided we were going to try to raise money for some musicians and gig workers here in New Orleans. About the third week of March, just before we got this off the ground, I got news from my doctor that my PSA was through the roof. He was suggesting that I probably had cancer but he needed to do some more tests.
Before COVID, not during the pandemic, the actual process that Ochsner Hospital went through is to do a biopsy. Then do an MRI which I call a blue laser MRI where they inject you with a dye and then the blue laser can highlight where there's any tumors.
I preferred to do the MRI first, and due to COVID, I was able to do that because nobody was working and everybody was concentrated on people with COVID in emergency rooms and all. It was really tough to get an appointment to go and do this. Finally, I got it all arranged and I went into this huge imaging building.
Because of the pandemic, there was me, the technician, and a receptionist in this entire building. It's very eerie going in there with no one, and you get strapped into this MRI. You're in there for an hour and a half or something like that.
When the results came back from that MRI, the doctors definitely diagnosed it as an intermediate to a high cancer. I think it's the new measurement's low, intermediate, high instead of stage one, two, three, four. Between intermediate and high, I wanted to do a biopsy as soon as possible. Well, that in itself was quite an ordeal to actually get going and get done due to the pandemic,
Again, nobody was scheduling, hardly anything. I took a 4, 5 weeks of wrangling to get this biopsy done and it came back with a positive. My PSA was through the roof it was over a four. Zero to four is a normal range. My PSA, I believe, was at a 13.
My doctor, Dr. Bardot, suggested one or two things. He suggested either radiation where I would have to come into the office every day for seven weeks or they would put a radiation pill ,Insert a radiation bead inside the prostate to admit low-level radiation or a radical prostatectomy where they actually take the entire prostate out.
Both of these procedures, when I started looking into them, really horrified me by the damage that they cause. The collateral damage, if you will, that they cause. There's an extreme high percentage of incontinence, a high percentage of impotency. When they cut the prostate out, they actually have to pull your penis back that distance to reattach it. So I can see where in some cases is to be really horrifying to a man to lose penile length. I really didn't know what to do.
I started researching other alternative methods and I came across a process called high-intensity laser ablation which is not approved by the FDA but the National Institute of Health are doing clinical trials on this. They make a small incision inside the rectum wall and a guided laser that basically targets the tumor and burns it out at 194 degrees Fahrenheit, I believe it is.
But none of this is covered by insurance, of course. I started a Go Fund Me. I managed to raise about two-thirds of the amount that I would need to do this at a private clinic I chose in Galveston, Texas. I had it all arranged, all the MRIs have been sent to them. I talked to the doctor several times. Everything was arranged and I was scheduled to go to Galveston on a Friday but a hurricane came through on Lake Charles. The second one last year, so I wasn't able to get to Galveston that weekend and rescheduled.
During that week of rescheduling, I met with my doctor here at Ochsner Hospital, Dr. Stephen Bardot. and found out that Ochsner had just been approved as the fourth hospital of the United States to be approved for High-intensity focal ultrasound or HIFU is this called. Almost exactly similar to the laser except that they use ultrasound. They sound to bombard the tumor. Ultra-precision MRI, ultrasound-guided and they bombard the tumor with sound which heats it up and kills the cells up to a 194 degrees Fahrenheit. I immediately said, "I won't do that. I don't want to drive to Galveston two days from now and get this done." I immediately canceled my trip to Galveston, signed up to do it at Ochsner. Again, like I said, it wasn't covered by insurance, but I had raised some funds through GoFundMe.
Ochsner was very kind and we worked out a deal on that. They scheduled it for 6 weeks later. I would be the first person in Louisiana to get this done. They also flew a doctor in from Cincinnati and had 4 other surgeons in the surgery room learning how to do this process because no one had ever done it. So I was basically a test subject.
Joel:
Given that they brought this doctor in from Cincinnati, I'm assuming that he is the physician that was teaching the procedures to the other doctors and he had experience doing the process or the procedure.
Shane:
Yes, sir. That's exactly correct. They called him, I'm not sure why this particular doctor but I would imagine he was a leading doctor in this field or in this new process.
Joel:
As a teaching point, I think one thing that we try to teach people is that the more experienced a physician has, doing whatever it is that they're doing, usually the better the outcomes both with cancer control and also with the resulting side effects. Here's a good example because they brought an expert in, because the other physicians didn't have the experience that was needed. I think it's good that happened. I'm curious because you referenced earlier on that you had done research where you found out the potential side effects of the alternative treatments and then you of course discovered two other alternative treatments. I'm just curious how you did your research? What resource did you use?
Shane:
I have a partner. I guess you could call her a girlfriend, but we don't live together in the same state. She lives in Massachusetts. She's a nurse practitioner. I incorporated her and another friend of mine that's a doctor. I logged into Medscape to look up information. I was signed in to several organizations on the internet. One is Prostate Cancer Network. I can't remember the other two at the top of my head but I got resources from them to where I could go get better information than just doing a Google search on the internet.
I also connected with the National Institutes of Health in Bethesda, Maryland. I spoke to one of the doctors there. I was actually accepted to come up and do a clinical trial in Bethesda, but I was unable to pay for the five or six airline flights that were going to be required to do that.
I found information that I would lead me to more resources to look for more information. It just blossomed from there. I started my search on Medscape and with Prostate Cancer Network.
Joel:
You took advantage or you did it right, in other words. You went to trusted sources. There's a lot of great information out there. But unfortunately, there's also a lot of not-so-great information. You went right to the good sources.
Shane:
I think I did. I feel like that I did. There are three, four people that I used to help me reference it all that have medical knowledge, very good in their field. They're very high-ranking to get lots of-- they know what they're doing and I trust them explicitly.
Joel:
Yeah. I mean, obviously one of those individuals was your partner, girlfriend. She clearly, as a nurse practitioner, has a background. I'm curious, who were those other individuals?
Shane:
Well, I have some personal friends that are doctors. One is in Oncology, and one is in Pediatrics. They're just close personal friends.
Joel:
But they were able to supply for you the support and that help you understand or translate stuff that perhaps you didn't understand. Would that be a correct assumption?
Shane:
That's very correct. They got access to certain sites that the average civilian if you will, the average person wouldn't have access to. And so they would look up things for me and then direct me in the right direction as to obtain the information I was looking for.
Joel:
Did you find that as you went through those sources, either your own or ones that were referred, were you able to understand what you were reading?
Shane:
Absolutely. I'm used to reading technical things. I have a degree in mechanical engineering, and physics, and math. It was a familiar setting to me, the technical references I've read. I mean, I'm also been an herbalist for about thirty years so I'm very familiar with medical terms. Just all of it combined, just the medical field. I've been around it a lot in my life.
Joel:
Did you think that an average person would have been able to understand what you read?
Shane:
Some of it, yes, absolutely. Especially in Medscape, they break it down into layman's terms to use old cliché. But they break it down to where it's very understandable on Medscape. I highly recommend that site.
Joel:
You also mentioned that more common potential treatments, radiation, and surgery. They treat the whole gland, but you said that the treatment you used, HIFU, treated the tumor.
Shane:
I tell you how it works.
Joel:
Yeah. Great. Thank you.
Shane:
You're welcome. The sensing device is inserted into the rectum and they have an active ultrasound MRI going. You can see it on the screen and it is very targeted area. I didn't actually see them do it. Obviously, I was under anesthesia, but they pick points around the shape of the tumor. They pointed multiple points all around. It gives it a very, very precise area of where this is going to be targeted so you don't damage any of the other nerves and cells next to it. As much as you can to limit damage as much as possible. Because if you damage the nerves, that's what's going to cause erectile dysfunction and impotencies. It's extremely detailed, targeted and they just blast, just that tumor with the sound and nothing else. As they do it they're watching it on the screen at the same time. So it's very, very precise and very quick. It only took two hours total for the whole thing.
Joel:
What about the recovery? What was that like?
Shane:
Recovery. It went well. Of course, you come out of surgery, you're groggy. You have all of these things attached to you that you don't have attached to you before. You have a catheter which is, I must say, that was the worst part of it all, was the catheter itself.
You have to wear a catheter and they give you 2 kinds of collection bags. One for at night and one can strap to your leg if you have to get out and go get groceries perhaps. You have to wear that catheter for seven days. I can't tell you how happy I was to feel that pain from pulling that thing out of me. I was just overjoyed with happiness to have that thing done.
It takes a little while to recover from that, a couple of weeks. There's blood in the urine, there's blood in all the body fluid. They give you a Cialis to take because you want to increase the blood flow to that area in order to speed up the healing process.
It takes about 10 days before the blood is out of the urine. Then it took several weeks before the blood was out of all the other seminal fluids. You practice your kegel exercises. Probably after two weeks I was released for light-duty, although it was no real reason to be releasing anybody for light duty because there's no work at the time.
But when I was released for light duty in another two weeks, then they said I could just resume my regular life after about a month. It wasn't difficult at all. Just the one week with the catheter was always hell, but other than that, it was not a big deal. It would have been a huge deal to have a radical prostatectomy and have surgery. They cut it out of you. You would have to wear a catheter for a long time up to 6 weeks. I'm so glad I didn't have to go through that. I'm so glad.
Joel:
Obviously, you didn't like having the catheter. Was it painful? What are you responding to?
Shane:
Yeah, it was. It was very painful to be in there. If you didn't pay close attention to it, it might come loose and then leak here and everywhere. You had to carry it around with you. It was just a real pain to deal with it. I didn't really move around a whole lot the first weeks.
Joel:
I assume that you live alone based on what you said before.
Shane:
I do live alone. Yes.
Joel:
Were you able to do this recovery alone? Or did you have some additional support?
Shane:
The only support I had during this is I had someone pick me up at the hospital and drive me home and then drive me back the next day to get my car. Other than that, I did it completely alone.
Joel:
So you took care of your own. Care and feeding, so to speak?
Shane:
Yes. You can walk around and do things. You're just carrying that catheter bag around with you, but I hook it on the belt and make breakfast or dinner. Yeah, not hard to do.
Joel:
Okay, well, good to hear. First of all, when did you actually have the procedure?
Shane:
November the 13th, 2020. Friday, the 13th.
Joel:
December, January, February, March, April, we're out about six, seven months.
Shane:
Right.
Joel:
How you doing? What are the results If I can ask about your continence? If I can ask about your sexual functioning? I mean, those were the biggest concerns as to why you went to HIFU.
Shane:
Everything works fantastic. I have zero incontinence. I have zero problems with erectile dysfunction or impotency. Nothing bad happened. Every single thing good that could happen, happened for this procedure.
Joel:
Clearly you would recommend it.
Shane:
Absolutely. I mean, when I go back and I reread some of the processes is that, like the radical prostatectomy, it's almost like mutilation in a way that such bad thing is going to happen and they're almost guaranteed when you do that, too. A lot of men wouldn't go through it, so I ain't doing that. I'm not going to put myself through that. The next thing you know, they had a really bad cancer to spread, metastasize, or something like this. This is not hard to do.
Go get your stuff done. Get your PSA done every six months after you turned 45 or whatever your doctor recommends, get it done. This is not hard to do. But if you screw up and wait, you really really mess yourself up.
Joel:
I think that's sage advice. Get your PSA test.
Shane:
Sir, I mean, be religious about that as a man.
Joel:
I think that's a fantastic message. Obviously, you're doing some follow-up work with your doctors. What did they tell you to do? What are you planning on doing?
Shane:
I go get a PSA test now, every 4 months. We're going to monitor probably the rest of my life like that, which is fine with me. It's just a blood test, not a big deal. You go in and take a blood sample and later in the day you get a notification of what your test is. It's so simple. It takes 20 minutes. I mean, it takes 45 minutes total. I mean, that's driving in the hospital, getting out, getting it done, and get back in your car in 45 minutes, not a big deal.
Joel:
Has your doctor discussed the DRE as follow-up care?
Shane:
I'm not familiar with that term.
Joel:
Digital Rectal Exam where they basically go in and feel the prostate for hard spots or irregularities?
Shane:
He has not recommended that yet, but I could see where that may be a thing that you do that during your physical exam once a year, I would think. We already did that anyway, so I don't see why he wouldn't continue to do that.
Oh, and one thing I'd like to add for sure, having HIFU doesn't mean you can't do it a second or third time. I mean, you can do this more than once if you get rid of a tumor and one appears on the other side. You can do the same procedure to get rid of that one as well.
Joel:
A good point. Thank you for bringing that up. One of the things that also I found remarkable is that when you were faced with having to do a procedure and your insurance didn't cover it, that you reached out to people. People responded and they did the right thing. I think that says a lot for us as a community.
Shane:
I completely agree with you. I will tell you that that was one of the hardest things that I've ever done for myself. I made the Go Fund Me, but to hit that enter and make it live. It took me two days to hit that enter button because I'm very independent. I don't depend on anyone for basically anything. To ask my friends and family, and strangers for money was extraordinarily difficult for me to do. But I did it, and I'm glad that I did.
Now, as a result of that, I've probably talked to seven or eight different men about this with local radio, the local television station did a little medical segment on me. I've talked to seven or eight men since then. Three of them are going to get the procedure.
One friend waited too long and he's in a lot of trouble. Again, I cannot emphasize this more to stay on top of this as a man. Eighty percent of men have some prostate issues before they die. You're going to get it. Stay on top of this man. Keep yourself alive and you live for a long, long time. If you screw up and procrastinate, it's going to hurt and it's going to be miserable. I don't want to see anybody go through that ever.
I'll make this offer right in here on your podcast. If anybody wants to talk to me, a man out there really wants some information, you feel free to contact me. I will happily help you through this and give you all the resources that I have.
Joel:
That is terrific. If anybody is interested in contacting you, do I have your permission to either pass on your email address? Or do you want me to just forward their information to you? What are you more comfortable with?
Shane:
You can pass my information on to anyone that you think might need it, Joel.
Joel:
I appreciate that. Thank you. I'm not clear whether you paid it forward in advance or paid it forward afterward, but you did manage to raise a substantial amount of money for musicians who were out of work because of COVID. You've already paid it forward. I have to thank you because not everybody steps up and does that.
Shane:
Well, I am a gig worker because I do work. I'm an electrical contractor for a lot of music, food festivals here in New Orleans and a filmmaker. We just decided to do this because I've done a lot of music videos. For instance, I did Paul McCartney's last music video. I was his light and guide for that, so I know a lot of people.
As a milestone, yesterday, our organization passed $400,000 that we raised for New Orleans musicians and gig workers. We've done 65 live shows straight through the pandemic. We're the only people in the world doing a live show and everything going online and see all 65 shows.
Joel:
Where would they go to see them?
Shane:
Our website is called "thefunkyuncle.live." It's named after a Mardi Gras float in the tucks parade called the funky uncle. That whole float was designed for a band to play music on while we go down the street. We use that as our set, broadcasts out of the tuck warehouse where there are fifty floats in there. It's a hundred thousand square foot warehouse.
You can go to "thefunkyuncle.live," if you want to donate, that would be fantastic. My thing is that I just want you, first of all, to push the coffee table back and dance in your living room to this. Enjoy some really, really local music that the pandemic presented us with a unique opportunity. We would never ever have gotten this level of talent on any show without the pandemic and people needing work. We've managed to raise $400,000 and distribute $400,000 to our local community.
Joel:
We need more people to do the thing you're doing and more people to be willing to be open and honest and share their experiences with prostate cancer. I really want to thank you as a fellow prostate cancer thriver. I think it's great what you're doing and I appreciate it, and keep up the good work.
I am going to check out some of those live shows as I'm sure other people will also do. Is there's anything else that you want to share that I just didn't get to?
Shane:
I guess, I didn't really think about it, Joel, beforehand. But I would think, when you go to your doctor and discuss this with him, go with the information. Go with a little bit of having looked it up so you have the knowledge, you know the questions that you need to ask.
Also, be aware that they're not going to tell you everything, I guess. Maybe because of time or what have you, but they're not going to tell you everything that could happen. So you need to really educate yourself on this and that would be through some of the sites that we just discussed.
There's a lot of resources out there. For instance, there's an organization that gets together corporate jets. If they have a seat on that jet and their jets flying somewhere, they'll give you a free ride if it's a medical thing. It's all arranged for you, you just show up at the airport and they fly you to where you need to go.
They're the ones waiting for you when you go home.
There are hundreds and hundreds of resources out there, so make yourself aware of this. Do the background work that you need to do and go armed with education and talk to your doctor. Don't miss your physical.
Joel:
I think that that's probably the most important thing you said, don't miss your physical, get your PSA test. If you're not getting a regular DRE through your regular normal physical, you should ask about that.
Shane:
Absolutely.
Joel:
I really want to thank you so much. This has been most informative and I am sure that we will be hearing some questions and I will forward them on. I want to thank you again. I want to thank you for being honest, and open, and sharing what could be for many people. Very personal information, and also for what you're doing for musicians. The musicians are so vital to our very existence. We don't appreciate that until we don't have music.
Thank you again. It's a pleasure meeting you.
I just want to close by saying that this has been Joel Nowak along with Mr. Shane Norris, a fantastic musical producer, and cancer thriver. We're looking forward to another podcast in the future. Shane, if you want to get back to us and perhaps give us an update in a period of time and let us know how it's going,I would appreciate that.
You can always have that HIFU process or procedure again. If you don't mind, if you would share with us on a regular or somewhat regular basis your progress, I would appreciate it. Thank you.
Shane:
I would be happy to do that, Joel. I'll make that a point to pay attention to, and do that.
Joel:
Thank you so much. It was really a pleasure. I appreciate meeting you.
Shane:
I enjoyed meeting you too, sir. Congratulations on being a cancer thriver.
Joel:
I am thrilled that my fingers and toes wiggle. Thank you.
Shane:
Yes, indeed.
Joel:
Okay.
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