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Patients Speak: Facing Mortality

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Mr. Spencer Le Gate spoke to Prostatepedia about his prostate cancer journey and his role in his local support group.

How did you find out that you had prostate cancer?

Mr. Spencer Le Gate: My family doctor put me on a small dose of a statin drug for cholesterol back in 2000. He had the good sense to give me a blood test every three or four months to check all my vital organs for any problems. At the end of 2007, he noticed that my PSA had started to rise. He asked if I knew anything about prostate cancer. Just a month prior, a childhood best friend had died from prostate cancer, so that was my introduction.

We watched my PSA for about a year, and then, in early 2009, I had a biopsy. We determined that mine was not the most aggressive form, so given all of the options, brachytherapy seemed like a good choice. I had the procedure in May of 2009. After that, there was a small spike in my PSA, which we all hoped would diminish as often happens after treatment. Almost two years later, my PSA had gone from around 1 up to almost 11, and that meant I had a recurrence of prostate cancer. Around early 2013, I had a biopsy that confirmed that I was recurrent nonmetastatic. I went on Lupron (leuprolide), which brought my PSA count down very nicely, so I asked if I could do it intermittently.

You asked for that rather than the doctor suggesting it to you?

Mr. Le Gate: Yes. I wanted the vacation because, of course, I experienced side effects.

What kinds of side effects did you experience on Lupron (leuprolide)? How did you manage them?

Mr. Le Gate: The side effects for me were, of course, the most common: hot flashes. At one point, I did have a Depo-Provera (medroxyprogesterone) shot, which diminished the hot flashes pretty well. The others were loss of libido and muscle weakness. I have lost muscle mass throughout my body, but particularly, in my legs. My muscles atrophied.

Were any of these side effects severe?

Mr. Le Gate: I would say, for the first round of my treatment, not so much. But since I went back on Lupron (leuprolide) in 2013, they are more pronounced. When I took the vacation, my PSA went up alarmingly. In other words, it was worse than that scary doubling threshold in three months.

Did they put you back on the Lupron (leuprolide) as soon as that started to happen?

Mr. Le Gate: I’ve been on the Lupron (leuprolide) for almost two years. Now, when I get up in the morning, my legs are painful and I’m a little rickety. Despite the fact that I’ll be 75 in a few months, my legs have been good to me, and I’ve led a very active lifestyle. The pain I feel now in the legs is not just the inevitably of age, but the Lupron (leuprolide).

Does exercise help with the side effects?

Mr. Le Gate: Exercise does. I have backslid some, but until about a year ago, I had a trainer. I went several times a week. I took a 12-week course of training sponsored by a local cancer organization during the intermittent period and it was very beneficial. Should I get the motivation to get back to exercise, it would help me a lot. I am still active and hands-on in my profession. I’m a general contractor. It’s a pretty active job, and I’m up and down all the time. But I learned very quickly once I started aerobic exercise, that it’s more effective than getting up every morning and putting on my tool belt.

Is there anything else that you do to manage the side effects?

Mr. Le Gate: Of course, the change in your mental state. When I’m not working, I’m a person who spends a lot of time reading, and before I decided to become a contractor, I had a pretty good education. I have some sense of my cognition, and I think that your overall mental state has an effect on how well you feel.

Did that go away when you went on the intermittent period?

Mr. Le Gate: It did. Most everything went away. I only had a year. During the intermittent period, I took that phenomenal 12-week course. We met twice a week for two hours of rigorous training, weightlifting—everything.

It was really eye opening for me.

Are you saying the exercise and training impacted the cognitive side effects you were feeling as well?

Mr. Le Gate: Oh, yeah. I think it did. I had some sense of that even before I had cancer. If you’re physically active, there is a positive mental effect to that. Again, some of these things are just so blurred. How much of it is due to aging, and how much is just the burden of a disease that— at this point—cannot be cured?

Stress, you mean?

Mr. Le Gate: Yes, stress. Also, I always have been a bit anxious. Now I think I have to be more careful about managing my anxieties. I mean, I think there’s so much of this disease that can be managed. You can manage it. I don’t have a metastasis. So I’m not in a worse position. I attend a monthly prostate cancer support group here in Sacramento, California. It’s one of the best things I’ve done. I’ve gotten involved in it, and I’ve actually had the good fortune to be asked to lead groups, come up with ideas, and answer folk’s questions. I’ve had a very healthy life and getting a major disease like this has been instructive. I started reading and writing more because of it, even just letters to the paper, letters to friends.

About your disease?

Mr. Le Gate: Not necessarily, no. I’m a political person on the progressive side. I have very strong opinions that I don’t mind sharing. Of course, I’m obliged to do more reading and be more thoughtful about my politics. I think having prostate cancer at this stage of my life has pushed me into this, and I take a great deal of satisfaction out of doing it now.

What advice would you have for a man diagnosed with this disease?

Mr. Le Gate: Find out all you can. Get involved in a group. Neither my oncologist nor urologist ever mentioned support groups. I discovered this just by chance when I was well into the recurrent part of my disease. Had I known that there was such a group when I was first diagnosed, I would’ve been better prepared to make decisions. Your doctor is a human being who can make good and bad choices. You need to be proactive.

I was fairly proactive, but when I first was diagnosed with the disease, had I known there was a support group, I would’ve learned about a number of other options. For example, there’s a group in San Francisco called The Second Opinion. Once you get a diagnosis— for no charge at all—you can meet with a group of doctors and discuss your options. I never knew there was such a thing before. Everybody who’s ever discussed the options thoroughly and looked at all sides of the coin can set their mind at ease before they make any decisions.

Are there other ways that the prostate cancer diagnosis might have had a positive impact on you?

Mr. Le Gate: After a lifetime without serious health problems, it’s not a bad thing to realize that you’re mortal. I think it’s made me more responsible about whatever time is left of me. I want to use my time the best way I can and to learn something, even if it’s just to learn something about the disease. There’s so much to learn about healthcare and the science of treating with medicine, but most people, if they’re healthy, simply ignore this. To be more informed in this way, and to have the disease yourself— if you’re smart and if you have a sense of humanity—you’re going to think about other people who have the disease and be more sympathetic to others.

The diagnosis has made you more—

Mr. Le Gate: Empathetic. I want to reach out to the people I see at my support groups because I know something about the disease, especially for those who have just recently been diagnosed. Because I know a bit more, because I’m old hat, if I’m able to do the slightest thing to relieve their anxieties and fears, that’s a good thing. I’m hopeful that I can put together some sessions at my prostate cancer support group where participants can discuss their mental state. At the last meeting, when I was asked to be the facilitator, I came up with the idea to put together a questionnaire, which would be voluntary and anonymous. I want to see what people have done to mitigate, find some distractions, and to discuss anxieties.

I’ve noticed in our group that we’ve discussed the mechanics more than the emotional. You have to be careful that you don’t make this into a weepy, touchy-feely thing. I’m trying to navigate it so that we can discuss our emotional things in a sensible way that’s helpful, that doesn’t make people more fearful.

You want it to be a positive experience?

Mr. Le Gate: Exactly. I was pleasantly surprised when I raised the point, which was so different than the things we usually talk about. We usually talk about where someone is in their treatment. The response was relatively positive from people.

It’s an Us TOO through the University of California Davis Medical Center and Dignity Health. We alternate between those two venues. I’ve been with this group about three years. I’m not a person who joins things, but it’s become an important part of my life. I have the support of my peer navigator, Bill Doss, and our Director, Beverly Nicholson. They are just fabulous people. I’ve really gotten a lot out of it, and I think others have too. It helps to be almost 75 years old and still have your wits about you.

To realize your experiences in life could be useful for a lot of other people. That’s what’s working for me.

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Patients Speak: Getting The Gallium-68 PSMA Scan

Mr. Michael Dietrich had the gallium-68 PSMA scan as part of a clinical trial when his PSA starting rising three years after the completion of radiation therapy. He spoke to Prostatepedia about the scan and how the results altered his treatment path.

How did you find out you had prostate cancer?

Mr. Michael Dietrich: I had a bad case of prostatitis in 2006. A PSA test done at that time read a value of 6 ng/ml. My urologist was concerned and I had a six-core biopsy performed. All six cores came back negative. I was treated with antibiotics for the prostatitis, which alleviated my symptoms. The urologist thought my elevated PSA was related to the infection and did not stress close monitoring of my PSA. I didn’t know any better and I put it out of my mind. I had another bout of prostatitis in 2011. A PSA test then revealed a high value of 65 ng/ml. A 12-core biopsy (a newly established standard) was performed and revealed 80% involvement, 4+3=7 Gleason score, and seminal vesicle involvement. I don’t know if there is a relationship between my prostatitis and my cancer, but the synchronicity is odd. Either way, the prostatitis led me to my urologist and, weirdly enough, I have to say I’m grateful for it. Gratitude for prostatitis. Weird, huh? I also was diagnosed with osteoporosis at that time. I was 50 years old.

Young.

Mr. Dietrich: Yes, pretty young. Though undetected, I probably had prostate cancer at 45 years old when I had that original PSA test and biopsy done. If I had had a 12-core at the time rather than a six-core biopsy, they very well may have found it then. Needless to say, I’m a fan of 12-core biopsies.

What treatments were suggested to you and which did you choose?

Mr. Dietrich: After the tumor board at Hollings Cancer Center here in Charleston, South Carolina, discussed my case and I was presented all my options, I opted for aggressive radiation and hormone therapy. As I had seminal vesicle involvement, I believed I would need radiation anyway, as I understood typical surgical outcomes involving seminal vesicles were often not so great.

What type of radiation did you get?

Mr. Dietrich: I had both intensity modulated radiation therapy (IMRT) and brachytherapy. For about six months before treatment, I had androgen deprivation therapy (ADT). I chose to have it a little longer than normal in hopes that it would further shrink the tumors to narrow the target for radiation and further sensitize the cancer to radiation toxicity. I don’t know if the wait really helped, but in my mind it made sense. After radiation treatment was finished, I received 18 months of ADT3: Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride). I’ve really been very happy with all the treatments I’ve received.

What kinds of side effects did you have from the radiation and ADT?

Mr. Dietrich: During radiation treatment, I got tired and a little achy. It also constipated me, which surprised me because a more common symptom is diarrhea. I asked for a peristaltic drug as I felt GI motility was an issue, so I was on Reglan (metoclopramide) at the end of treatment and it did help. Currently, I have the extended side effect of having to urinate a couple times a night, but it’s tolerable. I have moderate, not severe, erectile dysfunction (ED). I use Viagra (sildenafil) if necessary.

My very fine radiologist is an advocate for the use of rectal balloons during radiation treatment to help protect the colon from unwanted exposure. They were used during every treatment. Having a rectal balloon inserted in your colon (20 plus times) in conjunction with maintaining a full bladder during treatment to minimize organ movement is not a comfortable combination, but yes, it’s absolutely worth the beads of sweat you may develop on your brow it if helps with outcome and your future health.

The hormone therapy had its challenges for sure (like hot flashes, mood swings, and tender nipples), but like any other experience that a life can be presented with, be it negative or positive, I found it a learning experience.

As I was going through hormone therapy, my wife was going through menopause at the same time. We would trade the ceiling fan remote back and forth all night long dealing with our hot flashes. It was a bonding experience and it was interesting to be a guy understanding menopause.

I tried an experiment: from the day I started my hormone injections, I never shaved. I wondered how a lack of testosterone would impact beard growth and, interestingly enough, I had a 5-inch beard after my two year castrate period. Much of my body hair receded, though.

I lived in a beach town while I was on hormone therapy. If you fully want to understand how testosterone rules an adult male’s perception, remove sex hormones from your body, go to the beach, and monitor your perception and interest. An attractive, half-naked body can be as interesting as a sea gull or a dead horseshoe crab. Interesting, yes. Desirable, not so much.

I was surprised to find, at times, a certain beauty in neutrality and in being in a state of unsexually biased perception. Like the lifting of an obscuring fog to some degree. I was happy when my hormone therapy was over and I got my energy and sexual interest back, but the window of perception was interesting.

I found myself often viewing the world more like when I was a 10-year-old boy. I often experienced lightheartedness and unbiased acceptance of everybody. It was a perception benefit that I’ll never forget for the rest of my life. To this day, because of that insight, I am very aware of how hormones currently skew my perception. Aggression, arousal, competitiveness. It’s all there, but now subject to more acknowledged objectivity than before I attended eunuch university.

I’ve not heard that before.

Mr. Dietrich: Really? I am 50. I went to a liberal arts college in the 1970s where there was quite a bit of experimentation with mind-altering substances, myself included. Controversial, I know, but maybe that early use of hallucinatory drugs in my formative years did set a template for accepting/embracing shifts in perception. Maybe, maybe not. Regardless, I would encourage anybody entering hormone therapy to not be overly wary of it and realize that as your testosterone levels fall, so falls your caring about the fact that your testosterone is going away. Testosterone tends to be very possessive of itself. Be flexible with its passing. Speaking of mind-altering drugs, I was on a low dose of the antidepressant Effexor (venlafaxine) for hot flashes. It cut back hot flashes by 50% and did impact mood as well. It no doubt helped my attitude.

Getting off the Effexor (venlafaxine) definitely requires gradual weaning. I missed a dose or two by accident and felt quite nuts. It requires quite a structured commitment, a commitment not to be deviated from.

What did all this do for the cancer control? Did the radiation and ADT keep your prostate cancer in check?

Mr. Dietrich: My hormone therapy ended in 2013. My testosterone came back to my normal (between

700 and 900) and my PSA stabilized between 0.2 and 0.4. Normal readings for a patient who had received radiation, that is. After three years of stability, my PSA started rising mid-2016.

My mother passed away in January of 2016. Right afterward, my PSA started rising. My father passed on as well in December. My parents lived next door to us and we grew incredibly close. Perhaps it was coincidental, but I can’t help but wonder if the extreme grief and stress I experienced exacerbated my recurrence and contributed to my short three-month doubling time.

Progressively, my PSA rose beyond 2 plus my nadir of 0.15, signaling likely recurrence in a radiated patient. I had a skeletal CAT scan and an MRI. The bone scan was negative. The MRI was largely negative, but it revealed one—and I can quote—area of enhancement involving the right apex and the right posterolateral midgland to base, which could possibly represent residual recurrent disease, and no lymphadenectomy or other metastatic disease to the pelvis. My oncologist here in Hollings, South Carolina, mentioned the gallium-68 PSMA scan. We found a clinical trial at the University of California, San Francisco (UCSF), which I went ahead and joined.

You traveled so far to get the scan?

Mr. Dietrich: Yes. I had options somewhere on the East Coast and in Texas, but I chose UCSF because I have friends and family out there.

What was it like to get the scan?

Mr. Dietrich: I had to wait for about a month for a space to become available on the clinical trial. The scan generally costs $4,000, but my insurance covered it.

It wasn’t much different than an MRI. Very benign. I was worried about side effects, but I can’t say it was any more than with the MRI I had done with a tracer involved. I guess the only thing that really comes to mind is that there was a fairly ominous stainless steel-encased device that shielded the syringe from radiation leakage. I didn’t have any side effects from the solution or the scan. Within days, I communicated with the team performing the scan and they sent me an image and reading. There was one active 3mm node on my right side and a vague, nondescript one on the left, indeterminate but suspicious. No uptake shown on the prostate gland or anywhere else.

What was the plan after imaging?

Mr. Dietrich: That was a process to navigate. Treating oligometastatic disease is controversial with many people feeling that there is no long-term survival benefit in local treatment of local lesions and the correct treatment path is to go on systemic therapy. I was presented with chemotherapy (docetaxel) in conjunction with ADT3. I wasn’t ready for that and my gut instinct (or an extreme sense of denial) kept me looking for an alternative.

Having already had radiation to my pelvis, I was wary of further exposure so I looked into lymph node surgery.

I discovered Dr. Jeffrey Karnes at the Mayo Clinic, who regularly performs lymph node dissections on oligometastatic patients.

He performed a biopsy of my prostate and seminal vesicles, which luckily turned out negative on all cores.

On July 12, 2017, I had the lymph node dissection. Twenty-seven lymph nodes were removed. The pathology revealed two active nodes, the very same two nodes that the gallium-68 PSMA scan revealed. I’m in recovery right now from that surgery.

If you compare the gallium-68 PSMA scan to my MRI, the MRI suggested possible local disease in the prostate and nothing in my lymph nodes. The gallium-68 PSMA scan didn’t show anything in the prostate but did show active lymph glands, which was accurate. It was clear. Very clear.

Had I not had that gallium-68 PSMA scan done, it wouldn’t have been clear to me what to do. The clarity of the scan and the biopsy made me comfortable with the option of lymph node dissection, which in my situation may offer an up to a 20% chance of durable remission/cure or, if nothing else, may extend my time till I have to consider systemic treatment. A gamble perhaps, but one worth taking I feel, especially as I currently have no gross negative side effects.

How is the recovery going?

Mr. Dietrich: So far, I just have regular incision tenderness and soreness. No infection or anything else. The gastrointestinal recovery is a slow process. They have to really move your guts around quite a bit and anesthetize your intestines in order to work. Motility and digestive activity take a while to return even if you’re not feeling pain. I should probably have waited a couple more days for the flight back home, as it was just a week after surgery.

Do you have any advice for men who are considering getting this scan?

Mr. Dietrich: I wouldn’t hesitate. When I compare the results of what my MRI read compared to the clarity of the gallium-68 PSMA scan, it’s a no-brainer.

Do you have any thoughts about participating in a clinical trial?

Mr. Dietrich: Well, the gallium trial was just an investigational scan, not a comparative trial involving placebos or a control group. It just felt like any other scan.

As far as my thoughts of seeking treatment options, it can be a frustrating process as you can be presented contradictory beliefs on what’s your best path. Keeping focused on current data and talking to several educated oncologists is essential.

Collect data from everywhere, remain objective, and don’t stop. Web health message boards can be extremely good sources of both knowledge and support. There are other patients present on boards who are fighting for their lives as well and are very aggressive hounds on collecting and sharing current clinical trial, evidence-based data.

I own a company that services pathology instruments here in the Southeast. I’m always telling my technicians to practice distant objectivity and try to revoke preconceived notions when diagnosing a complicated, failed instrument. Preconceived beliefs can block our subconscious mind from connecting abstract dots into a correct forward path of figuring out a complicated problem.

Beginner’s mind?

Mr. Dietrich: Yes, beginner’s mind. That’s a good way to put it. Be confident. As a patient, you are in a position where you might be more open-minded, motivated, and educated on current data than even some physicians. You are fighting for your life and if you remain open-minded and if you don’t have a preconceived belief or a professional position to defend, you can think your way clearly.

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Living With Erectile Dysfunction After Prostate Cancer

Steve A. talked with Prostatepedia about his experience with erectile dysfunction (ED) after surgery and radiation for his Gleason 9 prostate cancer.

What was your life like before you had prostate cancer?

Steve A: A hell of a lot better than it is now. I think about and read about prostate cancer daily. I have no symptoms. Never have had any. But I work hard to combat the side effects of treatment and forestall recurrence. Eat right, exercise daily, and try to help others with prostate cancer.

I’m retired. I was a senior executive at a Fortune 10 company. I retired early back in 1998 and moved part-time to a resort community. I played a lot of golf and worked in community projects, including community government, and started a real estate development business.

I moved here full-time in 2001 and noticed that I had a problem with urination frequency. I saw a urologist who determined that I had benign prostatic hyperplasia (BPH) and put me on Avodart (dutasteride).

Then my prescription drug plan dropped Avodart (dutasteride), so I switched to Proscar (finasteride). Later my urologist added Flomax (tamsulosin) to shrink my prostate. I was on Proscar (finasteride) and Flomax (tamsulosin) continuously until 2013. They controlled my BPH pretty well but impacted my sexual performance. My sex life was not as good as it was before that as a result. I had mild ED.

Did you go on any medication for the ED at that point—like Viagra (sildenafil) or Cialis (tadalafil)?

Steve A: I tried them. They worked.

When and how did you find out you had prostate cancer?

Steve A: I had been getting annual PSA tests since age 40 as part of annual company physical exams. The PSA was around 0.4 for years, then increased gradually as I aged. But it was never considered a problem since it was well below the magic 4.0 considered “normal.”

Then, in 2013, my PSA suddenly doubled to 5.4 from 2.7 in 2012. I had it checked again and this time it went up to 6.6 in only a few months. So my GP, who recognized that PSA velocity (doubling time) was an indicator of a potential problem, recommended a biopsy. I found out that finasteride cuts PSA roughly in half, so my PSA was actually 13.2. This shocked me. Should I have had a biopsy years earlier? Could I have cured my cancer if I’d found it earlier?

So you had a biopsy?

Steve A: I got a biopsy from my local urologist. The Proscar (finasteride) had reduced my prostate size quite a bit, so I only needed to have six cores taken. It was painless. Pathology found 40% prostate cancer in one core and 10% in another core. The others were clean. My Gleason score was 4+4=8. I had a second opinion done by prostate cancer doctor Jonathan Epstein at Johns Hopkins; he upgraded my Gleason score to 4+5=9.

My urologist talked about what I should do. Was I a candidate for active surveillance? He didn’t think so. Turns out that was a huge understatement!

He said I was a candidate for either radiation or surgery due to my age (69 then) and otherwise good health.

So I saw a couple of radiation oncologists and a couple of surgeons. In addition to seeking a cure, I was concerned about three things: ED, hormone therapy, and dragging out the treatment process. I’m the kind of person who likes to get stuff done my part. I now question my decision to have surgery since the cancer had already escaped the prostate. Should the urologists or I have known that?

When you met with these different surgeons and radiation oncologists, did any of them speak to you about ED after treatment?

Steve A: I asked both surgeons if they could do nerve-sparing surgery because I was concerned about my sex life after treatment. The local surgeon said, “No, I wouldn’t try it. With Gleason 9, I’ve got to go pretty wide on the margins to ensure I get it all. I can’t promise that at all.” He was totally unconcerned about ED. I didn’t like his bedside manner!

When I spoke to Dr. Epstein he said he would do nerve-sparing surgery and gave me printed handouts which addressed all facets of what I could expect post-op, including incontinence, ED, etc. I liked his can-do attitude and was impressed with his credentials and Johns Hopkins’s reputation in the field of urology.

What about the radiation oncologists?

Steve A: I don’t remember them saying anything about ED. But they both agreed that hormonal therapy would be necessary before and after radiation therapy. That turned me off completely. I had read about the side effects of hormonal therapy and wanted no part of it. However, in addition to talking to people, I do a lot of reading. I read that you’re going to have ED with surgery, but that it’ll go away after a year or maybe two. ED with radiation comes later on.

I decided I’d rather have ED up front and get it over with than have it come two or three years later. So I went with surgery.

What happened after the surgery?

Steve A: The day before surgery, the doctor changed his mind and suggested that I have open surgery rather than robotic. He wanted to be able to feel the tumor, margins, and lymph nodes to determine which to resect. I was a bit concerned about recovery from open surgery, but he convinced me it would be no worse than robotic.

He resected about 10 lymph nodes and found nothing there. Pathology ended up very poor: positive margin at the base, seminal vesicle invasion, and extracapsular extension. It was serious because it had already escaped the prostate. I was downgraded from stage pT1c to stage pT3b.

When the surgeon came in to talk to me about my prognosis, he was not happy and said, “You’re going to be fighting this for the rest of your life.” Turns out I was one of the 10% with a high-risk case. I asked him how long I had to live. He said I’d still be alive in 10 years and sent me a nomogram that scored each of my risk factors in terms of life expectancy. I hope he was right!

So obviously, I had ED after surgery. I had incontinence for a while too, but it was mild. I wore one pad a day for 13 weeks, but haven’t had much of a problem since. I had no complications from surgery. My wife and I flew to Baltimore. She stayed in my recovery room. We flew back home three days later. The catheter and stitches were removed by my local urologist 10 days later. I was playing golf three weeks after the surgery. I’ve been unable to have any sex ever since. But subsequent radiation treatments are probably the main cause of my ED now. I’ve been fried.

Were you able to talk to your doctor about it?

Steve A: Yes. He said you have to use it or lose it. Then I had recurrence (rising PSA) so I no longer conferred with my surgeon. Only six months after surgery, my PSA started going back up again. I needed hormone therapy and radiation after all! In mid- 2014, I had 38 fractions of salvage radiation therapy (SRT). I was also on Lupron (leuprolide) for six months. That completely destroys your libido anyway. I didn’t even have any desire for sex.

Were you more worried about the recurrence than any ED?

Steve A: Absolutely. When you have Gleason 9 with my poor post-op pathology, survival—not sex—is all that matters.

I’ve had recurrence twice since SRT: in two pelvic lymph nodes in 2015 and in my right femur in 2017. In 2015, I went down to Florida to have 50 fractions of intensity-modulated radiation therapy (IMRT) to all my pelvic lymph nodes and was on Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride) for 13 months. Just a month ago, after stopping hormonal therapy, they found a lesion on my upper right femur. I’m now back on hormonal therapy and had stereotactic body radiation therapy (SBRT) in three fractions locally to my femur. I’m also on Xgeva (denosumab) for bone mets.

So far, no cancer has been found in my prostate bed, lymph nodes, or other soft tissue or organs. In that sense, I guess I’m lucky.

I’ve completely forgotten about the whole issue of sex. At night, when you dream, you sometimes think about it and really miss it, but the reality is that my primary goal is to be healthy, happy, and live as long as I can. I don’t need sex for that.

Did you ever seek treatment?

Steve A: I talked to my urologist. After surgery, I used the pump.

Did it work?

Steve A: It was marginally successful. I just wasn’t too keen on it. I thought it was more of a pain than anything else. I didn’t try injections. I tried daily Cialis (tadalafil). That didn’t do anything. The urologist talked to me about having an implant.

I haven’t really given that any thought. Now that I’m back on Lupron (leuprolide), I don’t have the desire for anybody. I’m just totally oriented to quality of life and length of life at this point. Quality of life doesn’t necessarily mean sex anymore.

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Living With Erectile Dysfunction After Prostate Cancer

Tim M. had a Gleason 9 prostate cancer removed by his urologist. He spoke with Prostatepedia about his struggles with ED posttreatment.

How did you find out you had prostate cancer?

Tim M: I had the typical issues that people talk about: urination and a PSA that was increasing a little bit. I had a phenomenal general practitioner, a doctor who really cared. He wanted me to do a biopsy. I was resistant. I said, “Oh, come on, Doc. This must be an infection or something.” Unfortunately, I resisted for about six or seven months, maybe even longer.

Finally, he said, “No, you’ve got to go for the biopsy.” So I went to a top doctor in my area. He did a check and said, “I don’t really think there’s going to be a problem, but let’s do the biopsy.” So I did it. He called and said he was surprised to say that I had aggressive cancer.

What kinds of treatment did you have?

Tim M: I really didn’t have much of a choice. My doctor said I needed surgery right away. He was a leading surgeon with a phenomenal reputation. I had the surgery two years ago.

Did the urologist talk to you before surgery about the potential for erectile dysfunction (ED) after treatment?

Tim M: Not really. He did not really touch on it. We asked him about it at one of the interviews. If we hadn’t asked him, I don’t think he would have really talked about it. I’ll never forget his answer. He said it was 50/50 whether or not I’d get ED.

What happened after the surgery?

Tim M: The surgeon completely removed the prostate. The cancer had gotten out of the capsule, but he thought he got it all because my margins were clean. I was very lucky. He was comfortable that we had it all. I didn’t have any problems with urination. The catheter clogged up one time, which was actually one of my biggest fears, believe it or not.

The catheter?

Tim M: When I was about 17, I went to see a friend who was in the hospital. He had a catheter and he explained to me what they had done to him. It left a burning impression in my mind. There’s a tube where? That kind of stuck with me. That was one of my concerns. I did have some issues with the catheter, but after that, everything was fine except for the erectile dysfunction.

Can you talk a bit about that?

Tim M: Nothing seems to really work anymore.

Have you been able to talk to your urologist about it?

Tim M: He gave me some pills—Cialis (tadalafil) and the other pills. It didn’t help. Then he said to try the injections, which seemed to help a little bit, but not really. He wanted me to increase the dose, but I really didn’t want to do that because of all the warnings: if something goes wrong, get to a hospital right away. The whole deal with the needle and the possibilities of side effects put a damper on things.

Did you talk to him about any other options?

Tim M: He went through all the options with me, including the vacuum and an implant and none of them seemed too attractive to me.

How do you feel about all that?

Tim M: Pretty bad. But you know, as you get older, you begin to accept things a little bit more. I guess you have to. I wasn’t happy about the cancer to begin with. All I can do is do what I can do.

I just turned 70 this month. I also have some cardiovascular issues. I go to the gym. I try to do what I have to do to keep conditions under control as best I can.

My doctor called me at 8:30 the night of my diagnosis and said, “I have to tell you you’ve got an aggressive cancer. It has to come out right away.” There was no light discussion. It’s not like I had a choice. If I had let it go, I would have died.

He was so focused on your cancer that he wasn’t really even thinking about potential ED?

Tim M: Yes, I believe so. That was the priority.

Did you have any problems with incontinence after the surgery?

Tim M: A little bit. I still wear pads, but I barely need them. I just got used to them.

He had suggested that I do Kegel exercises. But it’s weird. Because of my cardio situation, I wind up going to the gym and working like a fool for hours a week, but I just couldn’t get into those exercises. The pads were just too convenient, but that’s pretty much dried up at this point. The only time I have a problem is with stress if I’m exercising or something like that.

Do you have any advice for other men about to have prostate cancer treatment?

Tim M: You have to do what you have to do and deal with what you have to deal with. What you have to deal with might not be too good. There is nothing good about it in my view. My advice is to consider that ED is going to be an issue.

Do you think that more men are suffering from ED than surgeons think?

Tim M: Yes. I do absolutely think that. I’ll tell you something else. It’s a little bit sensitive to talk about, but I’ll just come out and say it. How do you define erectile dysfunction? You know what I’m saying? There are different levels of an erection. Obviously, when you are younger, it’s one way. My question is, where is the threshold? What if you end up with a three-quarter situation? My doctor told me 50% of men have ED, but of the other 50% what in the hell was the quality of what they had left?

Was the erection like what they had before or was it just enough so that they could use it?

Tim M: Yeah, just enough to use. I mean if you’re not going to be able to perform to some degree of quality, why bother?

Also, there’s a secondary problem, which is a psychological issue. When you ejaculate, there’s nothing there.

That must be a bit demoralizing.

Tim M: That was very demoralizing. Some people say, “What’s the difference?” There is a difference. It’s a mental thing. To tell you the truth, my first thought was: “Have I become like a woman? Is this an orgasm that a woman would have?” The physical aspect is not the big thing. It’s how you’re interpreting it and what’s going on inside your mind that’s the major thing.

It changes the whole experience.

Tim M: Thank God this didn’t happen when I was in my forties.

It might be worth going to see an expert in ED.

Tim M: Well, I know all the possibilities. It’s the shots. It’s the vacuum. It’s the operations.

From age 15 to 68, it was all just a natural happening. And now, you’re talking about mechanisms and devices and shots and operations and you have to push a button?

It sort of takes you out of the moment.

Tim M: It puts a whole different perspective on the deal. Men should definitely be prepared for what’s going to happen. I do think more information needs to be out there.

The more men know about what may happen the better they can prepare themselves?

Tim M: Yes. I think where doctors make a mistake, at least in everything I’ve seen and read and everything that the doctor has said to me, is that this is not a binary A or B thing. Do you have ED or don’t you? It’s not like that. It’s more like: do you have no dysfunction or do you have some? Is it the same as before or not? That’s important. My guess is that the vast majority of guys are going to say no.


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Your Number One Fan Is Looking for Love

 

AG.headshotWellness speaker Angela Gaffney teaches simple and effective strategies to help people achieve health, increase productivity, and live stress-free while reaching their personal and professional goals.

She offers her tips for nurturing your Number One Fan.

Picture your number one fan, the one who supports you most in life. The one who shows up no matter your mood, how tired you may be feeling, or how much pain you may be experiencing. Whatever the situation, your number one fan is there for you. I’m sure many of you pictured your spouse, partner, or maybe a parent or best friend. While these people are all great supporters in your life, your number one fan is much, much more! Your number one fan is your body.

We hurry through life at such a fast pace that we often forget to support the one that supports us most! Sometimes it takes a diagnosis or health crisis before we realize that our body may need more from us than what we’ve been willing to give. It was true for me, and it was true for many of you. Caring for your body goes far beyond just eating well and exercising. It takes commitment and conscious effort to ensure you’re giving your body all it needs to heal and achieve optimal health.

We all need to practice these four principles to care for our bodies through diagnosis, treatment, and in lifelong health.

Build Awareness

Daily habits are so second nature that it’s easy to underestimate the impact they have on our health. Start tapping into your daily habits and assess whether they’re offering you the supportive environment your body needs to heal and be well. If change is needed, take it one step at a time.

Consciously Choose

We often make decisions, big and small, out of convenience, haste, or emotions we’re feeling. It’s time to pause and choose differently. Before every decision you make, stop and ask yourself: “What will this provide me?” Just answering this one question will help you make a conscious choice and to move forward in a healthy direction.

Create a Supportive Environment

It’s hard to avoid sugar if there are cookies and cake in the kitchen. Building a supportive environment is of greatest importance if your goal is lifelong health. Replace processed foods with whole, fresh foods that nourish the body. Say no to unnecessary obligations to give yourself space and time to heal. Share your needs with your friends and family so they too can support you in this journey. Everything in our environment— the food we eat, the toxins we’re exposed to, and the stress we feel from everyday life—impacts our health. Do your best to create a healthy, supportive environment for you and your family.

Above All Else, Be Kind

You are on a health journey, which means some days will be easier than others. Use positive affirmations and encouraging words to support yourself in healing and lifelong health. If you veer off track, assess what you’d like to do differently next time and move forward. You have a choice in every matter, and you get to decide how you’d like to participate. Above all else, be kind to yourself in the process.

You are your best advocate! Take care of your number one fan by assessing your current habits, making conscious choices that serve you well, creating a supportive environment, and above all else, being kind to yourself through the process.

To hire Angela to speak at your next event, discuss a wellness program for your corporation, or take advantage of complimentary health tools, please visit http://www.AngelaGaffney.com.


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Living With Neuroendocrine Prostate Cancer

Stan P. has neuroendocrine prostate cancer. He spoke with Prostatepedia about his experiences with this aggressive form of prostate cancer.

How did you find out that you had prostate cancer?

Stan P: It was a PSA taken by my primary physician. It was taken kind of late. It came out to be 6.2, which is fairly high. After that, I started consulting around trying to find a doctor to treat me. That was back in 2006.

How did you find out that you had neuroendocrine prostate cancer? Was that when you were first diagnosed or was that after you’d been on some kind of treatment?

Stan P: I was taking Zytiga (abiraterone) for almost two years. The physician was also running blood tests. One of the substances in the blood test that stood out was this bone-specific alkaline phosphatase. It started to go up while at the same time my PSA was undetectable. It had reached undetectable status about a year after taking Zytiga (abiraterone).

The physician saw this one level going up, so he prescribed an F18 sodium bone scan along with a couple of other specialized blood tests. One of the blood tests was LDH, which I think detects cellular injury. Another was chromogranin A that detects neuroendocrine tumors. The third one was CEA, carcinoembryonic antigen, a marker for colon and thyroid cancer.

The one that stood out was the chromogranin A. It was high. At the same time, the F18 scan showed two neuroendochrine tumors. One was in the ileum (the end of the small intestine) and the other one was in the C5 vertebrae. With the undetectable PSA, these results from the scan, and some of the blood results, the physician suggested that it was probably neuroendocrine, which I didn’t even understand at the time.

He said something about adenocarcinoma being differentiated into this neuroendocrine tumor. From that point, his recommendation was to try some platinum-based chemo. I was not feeling any symptoms. I was not in any pain, and I was still doing my normal thing. He recommended that I undergo Xofigo (radium-223).

Were you still on the Zytiga (abiraterone) at this point or did he take you off the Zytiga?

Stan P: I was still on Zytiga (abiraterone) when all this happened. He took me off later because my kidneys started to show side effects from it—high creatinine. He took me off of that to see if it would lower the creatinine levels, and it did, so he kept me off it. I continued to take an androgen agonist (degarelix), which I’m still taking.

What was your initial reaction when you heard all this? Did you immediately start researching about neuroendocrine prostate cancer? How did you respond?

Stan P: I had no idea what a neuroendocrine tumor was. I didn’t even know what a PSA was. I got this medical explanation, and then when I started delving into it on the Internet, I found out that only 1% of the prostate cancer patients get this or have this condition. Then I knew it was serious.

There really are no cures. I consulted with two other prostate specialists. One was the chief of hematology and the other was the chief of prostate cancer research at a teaching hospital. One doctor said that he treats this through standard-of-care treatment, which means platinum-based chemo. The other doctor told me to go back on the Zytiga (abiraterone), which really didn’t make any sense. My understanding is that this neuroendocrine tumor does not have any androgen receptors. But the real issue is there aren’t many doctors around who spend a lot of time with this type of cancer.

What is your current doctor’s plan going forward?

Stan P: I just went through six months of Xofigo (radium-223) and completed that at the end of March. The recommendation has been to wait for three months and get a scan then. In the meantime, I take Firmagon (degarelix). During the six months on Xofigo (radium-223), I had a couple of scans. One was a technetium-99 bone scan, which was performed after two treatments with Xofigo (radium-223).

The strange thing was they only found one neuroendocrine cancer in the ileum. They did not find the one at the C5 vertebrae. Maybe the F18 was oversensitive to the scan. I don’t know.

At the same time, I entered a clinical trial for C11 Acetate PET/CT scan. They were giving me these C11 Acetate PET/CT scans every month, and I decided I should stop doing that because it was affecting my blood counts too much. I had two C11 Acetate PET/CT scans, and both were uneventful. They didn’t find anything, which I kind of expected because my PSA is undetectable. They did not detect any of the neuroendocrine tumors either.

Since ending the Xofigo (radium-223), I have not had any scans. I’m waiting another month, and then I’ll get another scan to see the effect of that. During the time I was undergoing Xofigo (radium-223), the blood tests were becoming much more positive. The bone-specific alkaline phosphatase went down to normal levels. That indicated that maybe the tumor was not growing anymore. The plan right now is to just stay on Firmagon (degarelix) and get another scan in another month. Treatment will be scheduled then.

Do you have any advice for other men who have been told that they have neuroendocrine prostate cancer?

Stan P: First, make sure you actually have a neuroendocrine tumor. Then consult with a doctor who specializes in neuroendocrine prostate cancer. I found a nationwide list on the site carcinoid.org. And just keep the faith. I have a positive outlook that something’s going to come to help me either put off the growth of this tumor or to cure it. I keep looking, and that’s about all I can do. Just keep the faith.

What about any advice for doctors treating patients like you?

Stan P: I would recommend that the doctors educate themselves on the ongoing clinical trials for this disease. Even if they don’t know about any while the patient is visiting them, they should at least tell the patient that they will do research themselves. I’m sure doctors have a better way of finding these things out than the layman.