Prostate Cancer Videos - Ross K



Prostate Cancer Survivor RossK P

Watch as Ross K takes us through his journey with prostate cancer.

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Video Transcription

Dealing with Anxiety

Change in Appetite

As far as a loss of appetite, I don’t really feel that I had a problem that way prior to the surgery. But after the surgery and for this next several months, there was some weight loss. I still maintained a fairly good appetite and I didn't have a lot of other side effects. Of course, after the surgery, I had the catheter and there was that concern for my incontinence and whether I would be able to gain control again there. So that was another part of the anxiety.

Coping with Change

I guess, in thinking about coping with the diagnosis of prostrate cancer - a support group, a family, a church like I have with members and a pastor who would inquire as to my health and condition, offer encouragement, and offer prayers - those were support things that helped me during that period of time.

Financial and Out of Pocket Costs

Costs of cancer are quite large, when you look at the list price. I don't know the grand total for mine, but I know it's a very high number. Fortunately, I was on Medicare. I had a good supplement plan, and so my out of pocket expenses have been very, very small. I'm grateful to have had as good a coverage as I did. The Lupron treatments are expensive. The Exchiva that I'm on is a very expensive treatment as well, running something like $1600 list per shot. But the Medicare and supplement insurance have been a tremendous help and so I'm very thankful for that.

Finding Information and Support

In thinking about cancer and prostate cancer, my awareness, of course, of this disease was highly improved or increased. Once you find out that you have a disease, I think you want to learn about it, and you want to try to find out what kinds of treatments are out there. I looked at a number of different websites. I found several out there to be fairly helpful. Early on, "What Next?" was not available, but there was an interesting website, "You're Not Alone Now," and I used that, which had some fairly open, frank discussions, by men and prostate cancer and other problems of incontinence and ED. Those are all part of the ailment, along with depression and sometimes a general weakness.

Gifts for Cancer Patients

Having people around you that are aware of your condition and inquire about it as to where you are, it allows the patient an opportunity to discuss their particular status and it doesn't alleviate all of the depression or anxiety, but it certainly helps you to realize that there is a support group, there is a help group.

Life Before Cancer

Three years ago, when I was diagnosed to have prostate cancer, I found that before that period of time, I had had a healthy active life. My PSA, for several years, had been reported by my doctor between the range of four and five plus. But with his digital exams, he did not feel that there was any concern at that time. The only problem I had was with an enlarged prostate and that caused me to get up once or twice a night to go to the bathroom.

Lowest Point

My lowest emotional point in my journey was probably at the meeting with the doctor when he said that he felt that my disease was ominous; that there could be cancer beyond the prostate, and suddenly you begin to think about the fact that maybe you’re not going to live through this process, that maybe this will in fact be the ending of your life. Your concern at that point, and your concern for your spouse, and a lot of questions that go through your mind at that point make it a very difficult time. I found that the high points for me came after the radiation when I began to go to the oncologist and get blood test reports back and were reporting that my PSA had lowered and was now down to a less than .08 which is a negligible amount. The current condition, my last PSA test was just a month ago, and at that time it was a minus .08 and the terms that the test used said that there was no residual disease. So, those are the high points that make you feel like you have conquered this evil and insidious disease that you don’t even know is in your body working on you.

Perspective on Life

How prostate cancer has changed my perspective is an interesting question. I think that you go through a process with anxiety and depression and a lot of concern that’s internal and personal. You’re consumed by that in the early stages of your cancer, but as you go on through treatment, and you find success with treatments, the perspective begins to change, and you begin to look outward again, and look at people that have been diagnosed with cancer, and you find that you’d like to reach out to them. You’d like to help them. So that’s been my perspective recently, and What Next is one source of help. It seems that every day there are people with new diagnoses of cancer who begin the whole process of worry and anticipation and what’s going to happen and those people need support. So all of us that have been through this, all that we can do, I think, is a worthwhile effort.

Place of Care

The care for the first surgery, the prostatectomy, was performed at Clarion North here in Annapolis. It was a fairly new hospital with excellent facilities, and I was very pleased with the process. Being diagnosed and making these decisions in December, I was still not able to get in for the prostatectomy until February. In early February, I went to Clarion. Went in on a Thursday morning, surgery was performed, and when I awoke, I found out of course that I had two drainage tubes, along with a catheter and I was there until Saturday afternoon. So from Thursday to Saturday, and then I was released and sent home with two drainage tubes and the catheter. The drainage tubes were removed within about two days after going home. The catheter - that I lived with for another couple of weeks.

Discussion with Family

When the results came back from the urologist, it was necessary to have an in-depth meeting with him. I had formulated a number of questions up to that point. It was a very nervous time for both my wife and myself. We debated about how to tell our family and when we should tell the family. We finally discussed that with them prior to my going into the doctor for the period of decision making.

Side Effects

The urologist recommended that I should have the radiation and that I should be on hormone therapy, which was to be Lupron. That first month or month and a half after the surgery, I was started on Lupron and because of the surgery and the catheter, I was working on regaining my continence which was a high concern. I wanted to be able to get to the point where I was not having to wear the maxi pads and have constant problems with incontinence. That took a period of probably about six weeks; but, I worked pretty diligently, did the exercises that were recommended to gain control of the continence, and had been started on the Lupron. The side effects for the hormone therapy are ED, which I had to learn to- deal with that; it also caused me to have hot flashes, so I could begin to identify with my wife and many of her friends who had been through that. After a month or so I asked the urologist if there was some additional medication that he could offer to minimize the hot flashes, and I did start on a medication to try to control that. The hot flashes would come on me two or three times a night and throwing off the covers. Sometimes during the day I would just suddenly flush and feel extremely warm. My chest, my head, so you’d feel like you had to get to a fan or something to try to control that. Over a period of time, that has kind of minimized. Having been recommended to have the hormone therapy, the original thought from my urologist was that I would probably be on the Lupron and Casodex for perhaps maybe two years, two to three years. Well now here we are, two and a half years after surgery and the start of the hormone therapy, and both the urologist and oncologist continue to recommend that I should take those hormones. Last April the oncologist recommended that I should be taking Xgeva. Xgeva is a fairly new therapy drug that is used primarily for those who have metastatic bone cancer. While I’ve not been diagnosed with that, he felt that it was a good drug to be added to my repertoire and so I’ve been on that since April of this year.

Symptoms

Three years ago I went in for a routine physical with my family doctor, I had no symptoms. I had no blood in the stool. I had nothing that would indicate to me that I had prostate cancer. The doctor ran his typical blood test and when I went in for the physical, he reported to me that my PSA was 9.74 and with his digital exam, it was apparent to him that I needed to go past him and go on to a urologist and seek further diagnosis. My primary diagnosis came as a result of the urologist’s test. That was the 12-position biopsy that was run, and that report came back that 7 out of the 12 biopsies were positive. That is, there was cancer evidence. The Gleason score that is normally used, reported to be about 7 in most of these samples. As far as whether the cancer was metastatic or not, that was to be determined later on. The urologist recommended that I have two further tests. That was the MRI bone scan and the colorectal coil exam. Those tests were performed a little less than three years ago. Fortunately, both of those tests came back negative. That is, it did not report cancer. The biopsies indicated to the urologist that there was, as he called it, a bulge on the left side indicating that there could be cancer beyond the margins, and so it was a fairly high concern and decisions needed to be made quickly.

Conditions and Treatments

In meeting with the doctor in December of ’09, he reported the bone scan was negative, as well as the rectal coil exam. He recommended surgery as my best option. We discussed the several types of surgeries available. He felt that rather than using the laparoscopic surgeries, he preferred what he called a standard surgery, a retropubic, a radical prostatectomy. Since my wife and I had come somewhat prepared for that, at that point decided that, yes, we would proceed and we’d like for his nurse to see about setting up the surgery.

WhatNext

I did find out about ten months ago, the website What Next, and I started to get on that. I told my story, and I started responding to other men who were writing in that were newly diagnosed. That period of time is such a difficult time. You’re wandering around looking for information. You’re wondering about whether you should have a second opinion. So, I felt that was a way that maybe I could help other men who were now coming into this process and starting what I call the prostate cancer journey.

Patient Doctor Relationship

The relationship between myself and the doctor, I had had no knowledge of my urologist. He had an excellent reputation here in the city. He came from a medical family and I was to later meet up with other members of his medical family. I found him to be a very knowledgeable man, had a good background, and our rapport early on seemed to be fairly good. He was not an overly outgoing, friendly man, but seemed to deal with the questions and answers that I had. He generally made both my wife and I feel comfortable.