Prostatepedia

Conversations With Prostate Cancer Experts


1 Comment

Is There A Consensus On Focal Therapy?

David Crawford, the distinguished Professor of Surgery, Urology, and Radiation Oncology, and Head of the Section of Urologic Oncology, at the University of Colorado Anschutz Medical Campus frames Prostatepedia’s November discussions on focal therapy for prostate cancer.

There is a lot of interest in focal therapy right now. Years ago, when I used to recommend radical prostatectomy and radiation to patients, they would ask why I couldn’t just take out a part of their prostate and not the whole thing. I would chuckle and say, “You can’t do that.” I’d say that prostate cancers tend to be multifocal. We can’t just operate on part of your prostate. We have to treat the whole thing.

That resonated with many urologists for years. Then Drs. Gary Onik and Winston Barzell started using cryotherapy to ablate prostate tumors and mapping biopsies to localize the cancer. Like a lot of things in medicine, there was a backlash of people who felt focal therapy was inappropriate because prostate cancer is multifocal.

Dr. Onik persisted. When somebody came in with a low-grade or even intermediate-grade prostate cancer on the left side of the prostate gland, he would biopsy the right side of the prostate extensively. If there wasn’t any cancer, he would do an ablation and treat the whole left side. That was the beginning of focal therapy.

I became interested in what I call targeted focal therapy about 15 years ago. Of course, focal therapy hinges on our ability to effectively biopsy patients so that you know you’re not missing other, more aggressive tumors. Focal therapy means focally treating a lesion, but I like the term targeted focal therapy because we’re targeting exactly where the tumor is with our mapping biopsies.

There are many ways to do focal therapy. We can use lasers, cryotherapy, or high-intensity focused ultrasound (HIFU). We’re working on using immunotherapy to target lesions. We can even put alcohol into the lesion and get rid of the cancer that way. Ablating the tumor isn’t the hard part. The hard part is knowing where the lesion is and targeting it.

Fifteen years ago, we had several hundred radical prostatectomy specimens; a researcher from Japan named Dasako Hirano, who had been with us for two years, outlined the tumors on acetate paper and then we put them into a 3D system so that we could simulate where these tumors were using different biopsying techniques. We showed that if you use the transperineal approach to place a needle into the prostate every five millimeters, you could sample the whole prostate without missing many significant cancers. I felt that it was safe to go forward with targeted focal therapy.

We knew we would not do any harm with 3D mapping biopsies.

We also talk about MRI in relation to focal therapy. MRI has been around for a long time. We’ve gone from 1 Tesla to 3 Tesla and now 5 Tesla MRI units. We’re getting better at reading the MRI results. There has been a lot of discussion about how accurate MRI is and what it misses. MRIs still can miss aggressive cancers. Depending on which expert you believe, MRI misses anywhere from 7-10% up to 30% of aggressive cancers. MRI is a lot simpler than our painstaking 3D mapping biopsy, though, so it’s caught on.

Dr. Mark Emberton was the first to champion MRI in the United Kingdom. Dr. Emberton and his team now have a lot of experience in using MRI in focal therapy, primarily cryotherapy.

But to me, the gold standard remains the mapping biopsies. MRI is good, but not perfect. Perhaps we can use molecular markers along with MRI to rule out more aggressive cancers.

Focal therapy is a response to overtreatment and it does have a place, but with prostate cancer, we’ve got to follow people a long time before we come to a consensus.

Subscribe to read about focal therapy on November 1.


Leave a comment

Focal Therapy + Prostate Cancer

Dr. Charles “Snuffy” Myers offers his comments on our November issue on focal therapy for prostate cancer:

Pp_Nov_2017_V3_N3_Thumb

Last month we reviewed the impact of new tools like imaging on treatment choices for newly diagnosed men. We discussed how improved imaging impacts planning of both radiation therapy and surgery, as well as the role imaging plays in active surveillance in terms of patient selection and monitoring. .

This issue is a logical extension of those conversations as we look at focal therapy treatment options based on those imaging tools. The renaissance of focal therapy is due to MRI, which has the ability to visualize cancer within the prostate gland with much greater precision than older techniques.

Focal treatment makes sense when the cancer is of limited extent, usually limited to a single major lesion on one side of the prostate. If the cancer is truly limited to only part of the gland, it may not be necessary to destroy the whole prostate. The hope is that focal therapy will have less impact on sexual function and urination than radical prostatectomy or radiation therapy to the whole gland. A frequently used analogy is a lumpectomy versus mastectomy for breast cancer.

As you read the interviews, there are a number of issues to keep in mind. With radical prostatectomy and radiation therapy, we know in detail the odds of long-term cancer control. This information is lacking for the various forms of focal therapy. One reason that cancer control might be less complete after focal therapy is that focal therapies largely depend on the ability of the MRI to identify patients with cancer limited to one area of the prostate gland. But, as we learned last month, the MRI is not a perfect tool and can miss small, aggressive cancers. Also, first-rate MRI facilities with well-trained radiologists are limited in number.

As a medical oncologist, I have recently had to deal with a particularly difficult situation. With the arrival of new, highly sensitive imaging for metastatic disease, such as the C-11 Acetate, fluciclovine F 18, and PSMA PET/CT scans, I am seeing a growing number of patients who have had radiation therapy and the only detectable recurrent cancer is in the prostate gland. Focal therapy in this setting is difficult because of radiation damage to surrounding normal tissue as well as dense scar formation within the gland. Several interviews touch on treatment options for this situation, but those options are far from ideal. It is unclear what the right path is for these men.

Subscribe! Don’t miss our focal therapy issue when it debuts next Wednesday.


Leave a comment

Prostate Cancer Diagnosis + Risk Stratification

Dr. Leonard Gomella spoke at the 18th Future Directions in Urology Symposium in Colorado Springs in August 2017. In this video interview, he offers a short summary of the talks he gave at that conference.

He focuses on two factors for prostate cancer diagnosis and risk stratification that he is researching and interested in improving. The first factor is the role of genetic testing for prostate cancer risk. He reviewed our preliminary consensus data from a big meeting in Philadelphia back in March to talk about what are the indications to sending a patient on to genetic counseling for further potential screening for inherited prostate cancer risk. He talked about things that will be coming out in his paper at the end of the year.

The second topic he addressed is what he calls Beyond MRI. He spoke about the new evolving next generation imaging involving PET scanning. He talked about the fact that there are 20-30 different PET scan technologies out there, but in reality only about 5-6 are getting attention right now. He believes that these new PET imaging will allow us to move beyond standard MRI and standard CAT scans and get much more information about disease status in individual patients.

 


Leave a comment

Gay Men + Prostate Cancer

william_goeren_mediumWilliam Goeren is the Director ofClinical Programs for CancerCare, a New York-based organization that offers counseling, support groups, education, and financial assistance to cancer patients and caregivers. Prostatepedia spoke with him about common issues gay men with prostate cancer face.

Why did you become a social worker?

Mr. William Goeren: I became a social worker in the mid-1980s in response to the AIDS crisis. This was not the direction I was headed, but the AIDS crisis had so shifted my outlook on life and altered my priorities that I needed to figure out a new direction, a new version of myself.

Like many young men in their early twenties, I had come to New York with dreams of a fulfilling acting career. In the midst of that, I had a shift in priorities. It was a rather dramatic shift. I was just trying to come to grips with grief, loss, death, and dying. And that’s when I attended a five-day workshop called “Life, Death, and Transition” presented by Elisabeth Kübler-Ross in upstate New York. Every day we had workshops, presentations, and individual work in her intervention model designed to help people understand death. It was very powerful to be in her presence. I knew who she was prior to going and was rather in awe of her.

After that workshop and others with a number of other high-profile people of that era, a hospice nurse strongly stated I would make a wonderful social worker. I applied to school, and my path very much changed at that point. I felt very passionate about my new direction.

How did you start at CancerCare and what do you do there?

Mr. Goeren: Earlier in my career, a gay male client in his early 30s who had a rare salivary gland cancer came in to where I was working and said that he was scarred after surgery and radiation. He said: “As a gay man with cancer, there are no services for me at all. If I had HIV, I would have services from A to Z.”

That comment stuck with me, so when I got to CancerCare in 2008, I started working on an LGBT cancer program here. In 2011, I collaborated with a New York organization called Services & Advocacy for GLBT Elders (SAGE), which provides psychosocial and concrete services for gay and lesbian elders. We launched a face-to-face support group for older gay men with cancer. That was the first actual service that we were able to launch. Though there’s a wide range of cancers in the group, the majority of the men have prostate cancer.

We’ve made attempts to launch other services; some are more successful than others. We started a group for gay women with cancer here in New York, but it was difficult to populate and maintain. We launched some online support group services, which are very robust and are for our national LGBT clients. There are currently two online groups for the LGBT community, one for LGBT cancer caregivers and the other for LGBT persons with cancer. Eventually, I would like to launch an online support group for the LGBT community who are bereaved because of cancer. We have a few publications, and I’ve done some talks at some of the national oncology social work conferences. In general, CancerCare now has 42 online support groups, which are social worker-facilitated, password-protected posting boards. These are not live groups but very much function like a face-to-face group.

What are the particular concerns or challenges facing gay men with prostate cancer?

Mr. Goeren: There is some research going on that is limited and minimal.

For example, David Latini, Daniela Wittmann, and Thomas Blank are doing research focusing on issues in the LGBT community and cancer and, in certain studies, research specifically related to gay men who have prostate cancer. They are interested in how gay men, differing from their heterosexual counterparts, react to being diagnosed; the impact of the diagnosis and treatment on their sense of self, emotional wellbeing, and quality of life; as well as how the medical community could be more sensitive and better trained in LGBT and cancer issues.

Research has shown that many gay men feel great shame, stigma, and embarrassment triggered by their emotional reactions and the physical changes related to prostate cancer and its treatment. This shame and stigma touches upon, for many, established internalized homophobia, previous experiences of discrimination and harassment, history of coping with, and in some cases, living with HIV disease, and negative experiences coming out.

Many men experience urinary and bowel incontinence, altered sexual function, and penile shortening (an underreported and under-discussed side effect). All of these impact a sense of masculine identity for men in general. For many gay men, prostate cancer can have a compelling and compromising impact on one’s sense of self within an already disenfranchised and diverse community, his self-esteem, and his ability to relate intimately to other gay men. Gay men report losses associated with prostate cancer for both the man with cancer and his partner. These losses include spontaneity, intimacy, and normalcy in sexually relating, which can lead to fears of rejection, emotional withdrawal, depression, and anxiety.

In addition, HIV affects many gay men who have cancer, whether they live with HIV, have survived multiple HIV-related losses, or are coping with issues of safer sex and determining their risk of exposure and infection. Another immense challenge for a gay man with prostate cancer is finding an oncologist who is educated in the complexly sensitive and layered issues that confront any gay man with prostate cancer. It is essential that an oncologist provide a comfortable, secure, and safe atmosphere, in which a gay man can disclose and discuss his sexual orientation, lifestyle, and activities.

Subscribe to read the entire conversation.


Leave a comment

Prostate Cancer Mortality Rates?

john_davis.jpg.resize.810.1150.highAt a presentation he gave at the18th Annual Future Directions in Urology Symposium, Dr. John W. Davis of the University of Texas M.D. Anderson Cancer Center, talks about prostate cancer mortality statistics:

One of the common things we rally around is the efficacy of PSA screening and what guidelines panels have shown. The US Task Force panel in 2012 gave PSA screening a poor rating and downstream this impacted biopsy and other effects to treating prostate cancer.

Their study quoted a 1990s study that said 1 in 200 men undergoing prostate surgery died within 30 days…the problem was that it lost data when the patient was discharged…the data set is now better, it is called premier perspective, and now it does capture discharged data so you can get a clear 30 day rate.

There has been a dramatic shift, when we first looked at the database from 2004-10, so the predominant technique was open surgery. Now, looking at the 2008-16 data, and the shift is heavily robotic.

Over the decades, the mortality rate for surgery is significantly improved over what the Task Force quoted in their evidence review, and we need to continue this trend. If you look at how many people screening saves in prostate cancer mortality, if you create a new treatment-related mortality that is non-prostate that has undone your effort. In the future direction of prostate cancer we need to also pay attention to non-prostate mortality.

Dr. John W. Davis talks about mortality statistics after both prostatectomy and radiation.


Leave a comment

What Comes After MRI?

shutterstock_269845688 (1)

 

Dr. Matthew Cooperberg is an Associate Professor of Urology and the Helen Diller Family Chair in Urology at the University of California, San Francisco. He is keenly interested in risk-stratifying prostate cancer to better match treatments to those most likely to benefit.

Prostatepedia spoke with Dr. Cooperberg recently about the role imaging plays in prostate cancer treatment.

Are there any other imaging techniques on the horizon that may replace the MRI?

Dr. Cooperberg: There is a lot of excitement for what will be the next-generation MR spectroscopy based on hyperpolarized Carbon-13 imaging. This is next-generation MR imaging in which we can essentially watch metabolic pathways unfold in real time at the millimeter level. That’s going to be incredible. This technology was developed by John Kurhanewicz at UCSF and is in late phase testing now. A few of these machines exist so far around the world; this may really be a game changer.

Technologies for next-generation ultrasound may also be able to yield a very high-resolution picture. These technologies have to be studied carefully head-to-head. It may bear out that better ultrasound technology will prove more cost-effective and easier on the patient than MRI, which requires separate visits, separate costs, and multiple physicians. Plus, MR is competing—especially when we talk about active surveillance—with blood, urine, and tissue biomarkers. Should a surveillance candidate who is on the edge get an MRI, a Decipher test, or both?

Would you use multiple tools or just one?

Dr. Cooperberg: Potentially multiple, but if everyone uses multiple tools, the cost increases exponentially. We don’t always know what to do with conflicting information. If you have a reassuring MRI and a concerning Decipher score, what do you do? If you have a high biomarker score and the MRI still doesn’t show anything, what do you do? These are challenging questions.

From a research standpoint, this is what makes it fun. But for the man on the ground, there is a lot of confusion. It’s part of the reason that I’m skeptical about how aggressively a number of these tests are marketed in the prostate cancer community.

You mean how tests like Decipher are marketed in the community?

Dr. Cooperberg: And MRI. It’s all in the same category. When I give a talk on MRI, I consider it to be a novel biomarker. It faces all the same challenges and has to play by all the same rules as Polaris or Decipher. You’ve got to prove that it’s going to give you better information than you can get from the basic clinical assessment. You’ve got to prove it’s going to help you make a better decision. And you’ve got to prove that it gets better outcomes, just like the biomarkers. Just as we’re not quite there with the biomarkers, we’re not quite there with MRI.

Subscribe to read the rest of our conversation with Dr. Cooperberg.


Leave a comment

Imaging + Prostate Cancer Staging

UrAwMC-22Dr. Matthew Cooperberg is an Associate Professor of Urology and the Helen Diller Family Chair in Urology at the University of California, San Francisco. He is keenly interested in risk-stratifying prostate cancer to better match treatments to those most likely to benefit.

Prostatepedia spoke with Dr. Cooperberg recently about how advances in imaging have impacted how we diagnose and stage prostate cancer.

Subscribe to read the entire conversation about advances in imaging.

How have advances in imaging improved our ability to accurately diagnose and stage prostate cancer?

Dr. Cooperberg: Imaging plays an emerging role. We have to be careful in this field—and specifically in this place in history—not to confuse advances in research with advances in clinical care. There are lots of exciting things going on with imaging research in prostate cancer that are presented to patients as being ready for prime time, but they are not ready yet in most community settings.

Two major imaging stories are evolving right now. One is better local assessment of the prostate itself, mostly based on MRI. The other is better staging with advanced imaging modalities centering on PET/CT, specifically prostate-specific membrane antigen (PSMA) PET/CT imaging. MRI imaging of the prostate has been a little bit of a challenge. Prostate cancers are notoriously not visible on CT scan and are only marginally visible on the historical MRIs that would be done in single phase, primarily to image the lymph nodes. Ultrasound, which is what we use to guide prostate biopsies, can identify a reasonably high proportion of prostate cancers, especially high-risk prostate cancers. However, doing ultrasound well takes a lot of experience and expertise. There are urologists who use ultrasound to identify the different regions of the prostate and don’t spend that much time looking for the cancers. With practice, it is possible to see at least a significant proportion of cancers with ultrasound.

shutterstock_732761797

 

 

 

 

 

In the last few years, the goal with MRI is to do a better job with local assessment of prostate cancers. Can we see the cancers? Can we accurately stage them using a multiparametric MRI exam? That means looking at T2-weighted imaging, which is essentially anatomic imaging. We look at diffusion weighting, which is intended to give an indication of cellular density. And we look at dynamic contrast, which gives us a sense of how much angiogenesis is going on. That combination of imaging modalities all within a given MRI exam definitely gives us a lot more information than before.

The goal is to see the tumor within the prostate and to get a measure of its stage. However, this all depends on accuracy, which remains highly variable. The UK has been a major proponent of MRI for a long time. Most reports suggest that there is improved accuracy when you do an MRI biopsy versus an ultrasound-guided biopsy. This means that we miss fewer high-grade cancers. The problem with a traditional biopsy has always been both under-sampling and over-sampling.

You find small Gleason 3+3 prostate cancers that you do not need to find, and there is a chance of missing higher-grade cancers. With MRI, both the over-diagnosis problem and the under-diagnosis problem tend to improve. Most agree that an MRI can identify cancers that would be missed on the ultrasound. Whether MRI can replace the standard mapped-out biopsy is more controversial.

shutterstock_735474271

In places like the UK, they are on the cusp of implementing a policy in which patients with an elevated PSA get an MRI-targeted biopsy if the MRI shows something. If the MRI doesn’t show anything, you don’t get a biopsy. But I don’t think the world is nearly ready for that. Even in the best series, there is quite a substantial risk of under-sampling with MRI-targeted biopsy alone. It is common to find higher-grade cancer with the non-MRI-guided biopsy.

The bigger problem, moreover, which is barely discussed, is with observer variability in reading the multiparametric MRI. A CT scan of the kidneys, for example, is a very consistent, straightforward test. Pretty much any radiology center can push “start” on the CT scan and generate similar-looking pictures. Any half-decent radiologist should be able to read the CT scan of the kidneys.

A multiparametric MRI of the prostate is a completely different story. There’s a lot of subtlety and a lot of expertise required in programming the machine, protocoling the exam, and interpreting the results.

We see patients who had a prostate MRI at an outside radiology center that is completely unreadable: it hasn’t been performed correctly, let alone interpreted correctly. Even if it is done right, there is an observer variability problem. There have been studies in places like the National Cancer Institute (NCI), who are major experts at MRI, but even at the NCI, there is major interobserver variation because there are shades of gray in terms of how we identify these lesions. (Observer variability is the failure to read the test accurately; interobserver variability refers to two or more clinicians interpreting different results.)

Would you say that MRI-guided biopsy plus the traditional biopsy would be a better approach?

Dr. Cooperberg: Because of the interobserver variability problem, I don’t think we should be anywhere close to getting rid of the traditional biopsy—not even in a center of excellence like NCI, and certainly not in a community radiology setting. Also, the sensitivity of MRI for high-grade cancer is still not as high as we’d like it to be.

There are lots of other questions. How do you do an MRI-targeted biopsy? Do you do what is called cognitive fusion, meaning you just review the MRI to guide your ultrasound-guided biopsy? Do you use fusion systems where we overlay the MRI images onto the ultrasound picture at the time of biopsy? Or are we doing an in-bore MRI-guided biopsy where the biopsy is done under direct MRI guidance in real time? These latter options increase complexity and cost. There is minimal evidence that one is particularly better than another.

Plus, the better you are at identifying lesions by ultrasound, the less commonly you are going to miss something on ultrasound that you would have seen on MRI. We do a lot of MRI at UCSF. We’re a big MRI center, and I order MRIs all the time because we have subspecialty radiology expertise available. A community radiologist who looks at one prostate MRI a month is not going interpret as well as a radiologist who reads them frequently.

Subscribe to read the rest of Dr. Cooperberg’s comments.


Leave a comment

PET/CT Imaging + Radiation?

 

shutterstock_230187559 (1)

Dr. Michael Zelefsky, a radiation oncologist, is Professor of Radiation Oncology, Chief of the Brachytherapy Service, and Co-Leader of the Genitourinary Disease Management Team at Memorial Sloan Kettering Cancer Center in New York City.

Prostatepedia recently spoke with him about how advances in imaging have impacted radiation therapy. Subscribe to read the entire conversation.

Do you think molecular imaging will be incorporated soon?

Dr. Zelefsky: There’s a lot of excitement with PET/CT imaging. PET imaging fused with MRI is also emerging now. This has been used effectively for various disease sites, not only prostate cancer. For prostate cancers specifically, newer PET tracers such as PET C-11 Choline and exciting developments in PSMA tracers will be used. These provide us unique opportunities to see where micrometastatic disease could be lodged. That information is critical for the radiation oncologist to pinpoint the disease. There are also exciting developments using some of these tracers as a form of therapy. Tracers such as PSMA are linked to lutetium-177 and tracers can be integrated with radiation planning as well. We are on the verge of seeing these new developments; these changes will soon be integrated with radiation.

Is there anything else you think patients should know about imaging’s role in radiation therapy?

Dr. Zelefsky: With new advances in imaging and by working in close collaboration with diagnostic radiology, we are getting much more accurate information concerning where microscopic disease is located and the critical zones within the prostate where tumors are lodged. We use imaging to consider re-biopsying patients where there may be a discrepancy between what looks like earlier states of disease, but the MRI shows there is greater volume of disease than what was anticipated. We need to know this information in order to plan the radiation well. We need to consider opportunities to intensify the dose to the DIL in the prostate and whether there is nodal disease and where exactly the nodal disease could be within the pelvis. Imaging plays a huge role in our follow-up with patients, allowing us to detect recurrences earlier than ever before. This is vital information for patients because earlier detection of recurrences allow for salvage therapies much sooner and treating such patients at earlier time points is often associated with more successful outcomes.

In the future, imaging will help us consider focal ablative therapies where the paradigm is shifting in earlier cancer s. Simply put, we could just focus on the DIL and spare the rest of the prostate if we can be sure that there is no significant disease in other parts of the gland. There have been a number of efforts to use focal therapy with advanced imaging to small subunits of the prostate. So new imaging possibilities are opening up new directions and opportunities in the treatment of prostate cancer.

Subscribe to read the rest of the conversation on imaging + radiation therapy.


Leave a comment

Imaging + Radiation Therapy

Dr. Michael Zelefsky, a radiation oncologist, is Professor of Radiation Oncology, Chief of the Brachytherapy Service, and Co-Leader of the Genitourinary Disease Management Team at Memorial Sloan Kettering Cancer Center in New York City.

Prostatepedia recently spoke with him about how advances in imaging have impacted radiation therapy. Subscribe to read the entire conversation.

What role does imaging now play in radiation therapy?

Dr. Zelefsky: Radiation therapy has been linked to imaging for many years. In the late 1970s and early 1980s with the advent of the CAT scan, those images were used in the treatment planning process to provide greater accuracy for targeting the radiation. Over the ensuing 20-30 years, there have been significant advances in imaging, from CAT scanning to MRI, and from multiparametric MRI to molecular imaging. These advances in diagnostic imaging continue to be linked to radiation treatment. We use multiparametric MRI imaging to target radiation to the prostate with exquisite precision. Just as importantly, we use these technologies to understand the geometry and anatomy of the surrounding normal tissues. For the prostate, that could mean the bladder, rectum, bowels, and even specific anatomic regions like the bladder neck and the neurovascular bundles that control erectile function.

Advances in imaging have allowed us to visualize these normal tissue structures, and this information is incorporated into treatment planning, giving us a way to deliver the radiation with a precision we’ve never had before.

What sorts of changes do you think are on the horizon as we develop better imaging techniques?

Dr. Zelefsky: We have successfully moved from CT-based imaging to MR-based imaging. Now, we commonly use MRI and fuse those images with the CAT scan. At Memorial Sloan Kettering, we have moved to the next step, which is pure MRI-based planning. This means we don’t need the intermediary step of a CT scan anymore. We can plan directly off the MRI, and we map everything out from these sets of specific We’ve also moved beyond MRI to what we call multiparametric MRI. We look at different sequences and formats of the MRI, including dynamic contrast enhanced imaging, and diffusion-weighted imaging to give us further information about the location of the disease within the prostate, which is called the dominant intraprostatic lesion (DIL). This dominant intraprostatic lesion is an important area to target because recurrences after radiation stem from regrowth of disease from that initial site of disease in the prostate.

Radiation oncologists are recognizing that there may be opportunities to intensify the focus of the radiation to the DIL to improve the tumor control rates with radiation. We have moved from CT-based to MR-based radiation therapy to pure MRI-based planning, and now we incorporate important information from multiparametric imaging. In the future, we’ll also incorporate molecular imaging, which comes from advanced nuclear medicine studies.

Subscribe to read the rest of the conversation.


1 Comment

Patients Speak: Facing Mortality

shutterstock_512245657 (1)

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.

Not a member? Join us.