Hello , my name is Johnny Payne and I am a I’m sixty-eight year African American man. I was diagnosed with prostate cancer in 2002. I was diagnosed by a routine screening during a Health Fair conducted by my employer at that time. I was given the PSA and DRE. I learned that my PSA was high, in fact, it was 15. At that time I did not know what that all that meant. I then consulted a urologist, and had another PSA, which was 15. A couple weeks or so later, I got a third PSA. All readings were very high. All were over fifteen.
My urologist ordered a biopsy. The biopsy indicated prostate cancer. My Gleason score was 7 and I was diagnosed at Stage 2.
There are several urologists in Greenville-Spartanburg South Carolina area where I live. Greenville is medium sized city. There are three major hospitals in the area. There were about 10 urologist in the firm with the urologist that was treating me. I traveled to Charlotte, North Carolina, which is a larger city, about 90 miles away for a second opinion. Once I interviewed the urologist in Charlotte, I selected him to perform my surgery based on his experience of doing a greater number of surgeries . My initial urologist was very understanding that I had selected another surgeon, and agree to accept me as a patient for follow up.
After I was diagnosed with Prostate cancer I asked my doctor, “What’s the next step?” He said, “That’s for you to decide.” That was kind of strange, I never heard a doctor say that to me. I said, “What do you mean for me to decide. I don’t know anything about this.” He then goes on to explain the different treatment options and that I should educate myself on the different treatment options, the pros and cons, and how it fits my personal situation. Once I did that, the decision on treatment was mine.
I then consulted two other urologists and a two oncologists, for further opinions. I did a lot of research. During the next month I read five books. I did research on options. At that time none of the urologist in my local area was doing the robotic-laparoscopic surgery. I selected the radical prostatectomy.
I’m married so I advised my wife on what I was doing, but she just trusted me to make all the decisions.
A lot of men don’t feel comfortable in making their own decisions as far as treatment options. They don’t think they know enough about it, so they trust the doctor 100%. In my case, I pretty much made up my own mind after doing my research. I spent a lot of time researching the surgery, and radiation options. I didn’t spend much time researching cryosurgery (the freezing technique) . I didn’t spent a lot of time on HiFu because it has not been approved in the United States. I’ve known cases where men have went outside of the United States to the Caribbean or to Mexico to have the HiFu done. Most of my time was spent deciding between radiation and surgery.
Once I made up my mind, I shared it with my doctors. They both said, I think you made a good choice. At the time, while I was talking to two urologists, I was also talking to a radiation oncologist and I asked their opinions. I had heard that a urologist is going to lead you or guide you toward surgery because that’s what he or she does. That is what he or she is familiar. Some people even say, that is because that is how a urologist makes his or her money. On the other side, you have the radiation oncologist. I am told the radiation oncologist they might tend to lead you and guide you towards radiation because that’s what they do, that’s what they are familiar with, and that’s how they make their money.
In my case, once I shared my opinion with my radiation oncologist that I was going to have the surgery, he said, “Fine, I think you made a good decision”, in fact, he said I was candidate for either surgery or radiation. Many men could choose either radiation or surgery. I told the urologist that I initially consulted that I decided to have the surgery. At the same time I told him that I had selected another urologist to do my surgery
I live near Greenville, South Carolina, my daughter lives in Charlotte and that was also a big help when I decided to go to Charlotte to have my surgery done because the hospital was near her home. When I was released from the hospital, it wasn’t wise for me to have a long car ride.
You asked me if I experience any discrimination. Of course being black and in America, sometimes you’re being discriminated against and you have no idea that you are being discriminated. In this case as far as I know, I was treated pretty well at this hospital. I went in Monday for my surgery and I was released on Thursday. My hospital stay was pleasant and restful. Immediately following the surgery, I was checked several times, making sure everything went the way it should. I didn’t experience much pain.
The main thing that I was concerned about was wearing the catheter. I had talked to men who had experience with the catheter and I read about the catheter. I was aware that some men may have to wear a catheter for several weeks. In fact I’ve known some men that wore the catheter over a month. But I was fortunate. I went in on a Monday , I was released on Thursday from the hospital with the catheter. I went to my daughter’s house in Charlotte. I had an appointment the following Monday to check the catheter to see if it could be removed. I returned on Monday and the catheter was removed. To me, the most discomfort I had during the entire process was wearing the catheter. It wasn’t necessarily painful, but it was a discomfort.
I learned from my research that Prostate Cancer was more prevalent in Black men. Black men normally have a more aggressive form of cancer than white men. I believe I had aggressive form of Prostate Cancer. I had a PSA reading of 15. My PSA rose from a 3 to a 15 in a three year period.
I learned later that was fast moving. That also told me that I may have had an aggressive cancer. I had a Gleason 7 and diagnosed at stage 2. After my surgery the pathology report revealed that I had positive margins. The cancer was close to escaping capsule and invading the lymph system and possibly the bones. After surgery I retuned to have external beam radiation because I had positive margins, and I was also had a rising PSA. If my treatment was successful my PSA should go down at practically zero.
My doctor had encouraged me to do the external beam radiation. After radiation my PSA then went down to practically zero and it’s remained there at virtually zero for the last thirteen years. It was a good thing I did go back for the external beam radiation to take care of those residential cancer cells that the surgery missed.
I think that Prostate Cancer is a genetic based disease. I will not say that African American men, are genetically predisposed to have Prostate Cancer because we don’t know for sure. I think our diet plays a role . We tend to eat more fried foods, more fat, more red meat than maybe other ethnic groups. Where we live may play a role. Being in the South , because even white men in the South tend to have more prostate cancer than in other regions. Our diet, our genetics, and my research shows me that black men have a tendency not to be screened as much. Black men tend not to get screened as early as White men. In the case of Black men when we discover the disease, many times it’s already at a more aggressive level, meaning it is a more advanced.
There is a prostate cancer screening disparity. Maybe due to a lake of resources and/or insurance. Some men may have to rely on free screening programs. We also now have some groups discouraging screening by saying it’s not really that beneficial.
I realize we do have some over treatment going on. In my opinion everybody who is gets screened shouldn’t rush out and get treated. I do recommend screening because there is no downside with the screening. There is no side effects with the screening. The side effects are associated with the treatment. We talk about making an informed decision. If you are going to make an informed decision you need the information from the screening. If you get a biopsy, then you’ll know what your Gleason Score is, and then you will know your stage. Then you can decide whether or not to get treated.
I don’t encourage anybody to get treated if they don’t want to. What I want men to do is to have enough information and they are making the decision based on facts and based on sound data. In my opinion as long as these men have the proper information and the facts they can make that decision.
I tell men that when they hear these prostate cancer screening recommendations from the United States Preventive Services Task Force, I do remind them, “You know that these two studies that they based these recommendations on, there were hardly any black men in any of those studies.” One was a European study which had, probably, no black men. There was a US study that had a very few black men. This disease really affects Black men differently. I wish we could have a trial like this with 100% African American men and that way we can develop screening guidelines for African American men. I believe African American men should be screened and establish a base line beginning at age 40
As I mentioned earlier I learned from my research that Prostate Cancer was more prevalent in Black men. To my knowledge there are no African America urologist in South Carolina, I do a lot of health and wellness education outreach related to cancer and other diseases that affect African Americans such as heart disease and diabetes. I think sometimes people may have a tendency to feel more comfortable with a doctor that looks like them. This could be that this doctor probably may have had similar life experiences and might be more understanding of certain things.
My primary care physician for the past 5 years is a young African American doctor. The is the first Black doctor I have ever had. Also the gastroenterologists that did my colonoscopy is an African American. I met these doctors through my outreach work with the Greenville Health System. I believe there still exist some distrust on the part of African American with the medical community because of the Tuskegee experiment. Actually that was not that far ago. I believe this happen in the 1930s. There are still people alive today that remember this.
I think another thing is that Black doctors may be more, honest with their patients without fear of insulting the patient, especially with African American women when talking about obesity.
In fact, my doctor counseled me several times about my weight. None of my previous doctors ever told me to lose weight. Although I am not very much over weight. I do need to lost weight.
I tell African American men, to be screened at least by age forty. I tell white men with a family history to be screened by at least age forty as well.
African American men don’t seem to enroll in clinical trials. I think many times black men don’t know that the trials are going on. Also there is the trust issue, going to the stigma from the Tuskegee Experiment.
There exist denial on the part of some men, because especially in the early stages, there are no symptoms. I have heard men say that “I don’t believe I’ve got it. I don’t think I’m sick. I don’t feel anything. I don’t think anything’s wrong with me. I think he wants to cut on me and make some money.”
There’s is distrust with the pharmaceutical industry. They think that the drug companies just want to sell drugs. I’ve asked pharmacists and doctors about some of the herbal remedies or natural remedies. Most doctors and pharmacists won’t recommend these because, they haven’t been through clinical trials. They haven’t been approved by the FDA, and don’t really have any data to back up whether they work or not..
Finally I want men to be continued to be screened but I want them to use caution in their treatment decision because I do believe there is over treatment going on. I do believe that everyone who is diagnosed don’t necessarily have to be treated or at least treated right away. I think that is really important and I think it is overlooked a lot. To me, active surveillance is a treatment option. It’s not that you are not being treated, but you are because you are actively involved in this disease. You’ve been diagnosed with it, but you don’t have to run out right away and get treated and suffer all of these undesirable side effects.
I’m hopeful soon, we’ll be able to differentiate between the aggressive cancers that we need to treat right away and the non aggressive cancers that we can probably live. There are many men who go their whole lives, live to be very old, and then die of something else because they happen to have a non aggressive cancer that didn’t really need to be treated.