Navigating the Path Forward: A Guide for Veterans Facing Metastatic Prostate Cancer
Resources, expertise, and survivor support to help you after a diagnosis

There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis.  Dr. Heather Yeo, a surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips for patients:

• Have someone come with you to the doctor — It is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.
• Take notes — Writing down what you hear can help you focus and create a record of the information so you can refer to it later on.
• Don’t be afraid to get a second opinion — Your doctor won’t be offended if you get a second opinion. It is extremely important to go through the process with a doctor you trust — and make sure you’re getting the best care possible with a doctor you feel comfortable with.

“What would you do if someone in your family got cancer?” We put that question to some of the most renowned cancer doctors in the country. National Cancer Institute Chief of Surgery Dr. Steven Rosenberg recommends seeking out multiple professional opinions to confirm a diagnosis and figure out the options.

Patients should not feel guilty about doing this — as many doctors will recommend and even encourage it.

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the potential approaches to your disease is crucial.

“What the task becomes is having the courage to live in the face of uncertainty, realizing that you cannot necessarily control the uncertainty in life … the suffering that occurs, challenges both good and bad,” Dr. Breitbart said.

“You may not be able to control those but you have control over how you choose to respond.”

Those struggling with feelings of loss of control that cancer can bring can seek help in many different ways — from traditional therapy to support groups for people living with cancer to making lifestyle adjustments to help cope with stress.

Your input is invaluable, and a collaborative approach ensures that your unique needs are addressed.

When faced with something as life-changing as a cancer diagnosis, it can be easy to overlook some options. For prostate cancer, multidisciplinary centers are a great option because they offer patients the opportunity to work with multiple specialists all in one place.

Regardless of where you begin your treatment process, there may be several specialists involved in your care — your treatment team, if you will.

Your medical team may consist of:

• A Urologist — A surgeon who focuses on treating issues with the urinary tract and the male reproductive system. If you have prostate cancer, the urologist may help with the diagnosis and offer surgery as a potential treatment option. A urologist is often involved in caring for men with prostate cancer through multiple steps in the journey.
• A radiation oncologist — Someone who uses radiation to tackle cancer. Radiation is one of the most used treatments for prostate cancer. Radiation can cure early stage disease and help men live longer who have metastatic disease. A radiation oncologist along with a urologist are most involved in treating prostate cancer in the United States.
• A medical oncologist — A doctor who specializes in using systemic agents like chemotherapy or immunotherapy to treat cancer. They’re trained to diagnose it, figure out how bad it is, and treat it using things like chemotherapy, endocrine therapy, and other medications.
• A physical therapist — A pro at helping people get their strength, mobility, and function back. If you’re dealing with prostate cancer, physical therapy can counter some of the side effects of treatment, like bone weakening from hormone therapy. It can also make you feel more in control of your body and help with stress and anxiety.
• A nutritionist or dietitian — An expert in what your body needs to stay healthy. They can suggest what to eat to keep you strong and combat some of the side effects of treatment.
• A social worker — Can offer counseling and support in many different ways. They’re there when families dealing with prostate cancer face tough challenges.
• Mental health professional — Professionals such as a therapist, counselor, psychologist, or psychiatrist might be helpful to you if you are struggling mentally or emotionally after a diagnosis. Those looking for spiritual guidance may find helpful support from clergy, including hospital chaplains.
• Genetic counselor — A healthcare professional who collects your personal and family health history and uses this information to help determine the likelihood of having a genetic condition or mutation. The genetic counselor can help you decide whether or not genetic testing might be right for you or your family members, and can help explain genetic testing results.

Prostate cancer can spread anywhere but most commonly spreads to the:

• Bones
• Lymph nodes
• Liver
• Lungs

Genetic testing and profiling of the tumor is most often indicated when a patient has prostate cancer that has developed into metastatic disease.

The results of this testing have several implications for future treatment. Understanding the testing options and when to get treatment is important when making informed decisions regarding your future cancer care.

In addition to hormone therapy, your doctor may recommend chemotherapy. This treatment uses strong drugs to kill cancer cells throughout the body.

Fortunately for men with metastatic disease, there are many new drugs available that have the potential to keep the cancer under control for many years. These include androgen deprivation therapy, chemotherapy, radiation therapy, targeted agents, immunotherapy, and Radium-223 treatments. Sometimes, if one treatment stops working your doctor may switch to another that works better at keeping your cancer under control.

Your doctor may also discuss the use of radiation therapy. Radiation therapy in advanced disease can be used to eliminate any pain or issues your cancer is causing. In some cases, your doctor may consider giving radiation to the prostate, as well as to cancer cells that have spread throughout your body.

The goal of treatment for men with metastatic prostate cancer is to prevent symptoms and control the cancer for as long as possible. Given the many new advances in treating prostate cancer, men with metastatic disease can live for many years after their diagnosis with good quality of life.

Chemotherapy for Advanced Prostate Cancer

According to Dr. David Wise, medical oncologist and the director of Urologic Medical Oncology at Perlmutter Cancer Center, there are two standard chemotherapy options. One is called docetaxel (brand name Taxotere) and the other one is called cabazitaxel (brand name Jevtana).

“These options have been around for a fair bit of time. They’re both approved for hormone resistant metastatic prostate cancer. But we’ve now understood how to better incorporate these chemotherapies into the context of different treatment paradigms,” Dr Wise said.

“For example, we now have an approval for docetaxel in the context of hormone sensitive prostate cancer. When a man is initially diagnosed having never been exposed or treated to hormonal therapy with metastatic prostate cancer.”

He also explains that nowadays, physicians know better how to handle these drugs.

“We’re understanding that we don’t need to use the high dose that was originally the approved dose for cabazitaxel. We get comparable outcomes with far less toxicity.”

For men with advanced prostate cancer, ADT is often the first treatment suggested. It can be paired with another drug depending on factors like how fast the cancer might progress and where it has spread.

“If we take away testosterone, we can shrink down the tumor and hold it in check for often years and years and years,” Dr. Stephen Freedland, a urologist at Cedars-Sinai Medical Center, explains.

According to Dr. Freedland, it is traditionally given as a shot once a month or less frequently, depending on the particular case.

ADT can be done by taking medications that interfere with male hormones or by having surgery to remove the testicles (called an “orchiectomy” or castration).

In many places, including the United States, using medications is usually preferred over surgery. These medicines work like surgery, essentially acting as a “chemical castration” to halt the production of male hormones, even without removing the testicles.

GnRH agonists are medications that temporarily “turn off” the production of male hormones (androgens) in the testicles. This helps starve the cancer cells, making the prostate shrink. You typically get these as shots every one to six months or as a depot (a slow release injection) that lasts for 12 months. Examples include leuprolide (brand name: Lupron) and goserelin (brand name: Zoladex).

When you start this treatment, there might be a temporary increase in the body’s androgen levels before they start decreasing (called a “flare”). This can lead to a brief growth of the tumor, causing some men to experience worsened symptoms like bone pain. To prevent this, doctors may add a second medication, known as an “antiandrogen,” to the GnRH agonist, at least in the beginning. This helps manage symptoms and improve your overall experience with the treatment.

Degarelix, known as Firmagon, is a type of medication that, unlike a GnRH agonist, swiftly stops the testicles from producing male hormones (androgens). This can be especially helpful when there’s a significant worry about the disease progressing before the treatment takes full effect.

Another option is Relugolix, also called Orgovyx, which is a GnRH antagonist available in pill form. This might be more convenient compared to getting shots of either a GnRH agonist or antagonist.

CRPC vs mCRPC

Both Castration-Resistant Prostate Cancer (CRPC) and Metastatic Castration-Resistant Prostate Cancer (mCRPC) are advanced forms of prostate cancer.

They no longer completely respond to treatments that lower testosterone (ADT) and they show signs of growth, like a rising PSA even with low levels of testosterone.

Treatment for metastatic castration-resistant prostate cancer may include chemotherapy and radiation.

Chemotherapy

Drugs like docetaxel and cabazitaxel may help extend how long men can live with CRPC and mCRPC.

Cabazitaxel is given with the steroid prednisone (brand name Jevtana), and is an option when docetaxel doesn’t help, for mCRPC patients.

Radioactive treatments

Some treatments like Xofigo (radium-223 dichloride) can be used  to attack cancer cells in bones.

It is an injection used to treat prostate cancer that no longer responds to hormonal or surgical treatment that lowers testosterone.

It is for men whose prostate cancer has spread to the bone with symptoms but not to other parts of the body.

In CRPC the disease is confined to the prostate and surrounding tissues. And in mCRPC, the cancer has spread to distant sites, such as:

• Bones
• Lymph nodes
• Liver
• Lungs

The main goal for treating CRPC and mCRPC is to control symptoms and slow progress. Even though androgen deprivation therapy or hormone therapy may no longer work completely to stop prostate cancer from growing, most men remain on ADT because some prostate cancer cells will continue to respond to it.

Other cells need additional treatment to keep the cells from forming.

He continues, “Once the radioactive compound is taken up by the cells, it provides imaging signals that are captured by highly sophisticated cameras. But PET scan does not provide a structural outline of the organ being imaged. A CT scan uses regular X-rays to outline the structure which is being imaged. As a result, we get composite images of cancer cells along with their structural outline.”

A regular PET-CT scan uses a molecule called 18F-fluorodeoxyglucose (FDG). This is essentially a glucose molecule tethered to a radiotracer (any material that can be detected based on its radioactivity). FDG is preferentially taken up by cancer cells in the body, as they tend to burn more glucose to fuel their growth than most of the other cells within the body.

This action by cancer cells is seen as bright areas on the PET portion of the scan. Then, PET imaging is combined with a high-resolution CT scan (obtained at the same time as the PET) to generate a combined image that precisely pinpoints the location of the cancer cells.

These scans are revolutionary and have vastly changed the way modern medicine treats prostate cancer.

Summarizing the need for a PSMA PET-CT scan, Dr. Paul says: “The most used PET-CT is FDG PET-CT. FDG targets the property of increased glucose metabolism of cancer or other cells. Prostate cancers, unlike many other cancers, especially in early stages are slow growing and not very metabolically active.  Therefore FDG PET-CT may not provide the whole picture of cancer spread. PSMA PET-CT is different because it images different properties of cancer cells. PSMA is found in [more than] 80% of prostate cancer cells. As a result, it better depicts the distribution of cancer spread.”

He continues, “Multiple research studies have shown PSMA PET-CT has better accuracy and detection capability of prostate cancer than conventional CT scans and bone scans. As a result, a treatment plan can be changed based on PSMA PET-CT results. For example, PSMA PET-CT may detect cancer spread outside the prostate earlier than a conventional scan. Those patients may not benefit from prostate-directed radiation or prostate surgery. PSMA PET-CT can also help cancer doctors in treatment decisions when PSA is detectable but still too low to be detected by conventional scans.

When discussing how Pluvicto is given, Dr. Wise explained: “It’s an intravenous treatment, it’s delivered quite quickly, it’s delivered once every six weeks and it’s usually administered by either a nuclear medicine physician or a radiation oncologist.”

“Patients tolerate it really well and that’s why it’s so sought after. It really can work in the majority of patients and in a subset of patients we see a large and significant reduction in the burden of the cancer and the symptoms from the cancer,” he said.

Unfortunately, however, it’s important to remember that Pluvicto is not a cure.

“I think it’s important that patients understand … Pluvicto is really meant to be used to dramatically reduce the burden of the cancer and give more time and give better quality of life, but also open up more opportunities for follow-up treatments potentially on clinical trials that are designed to give us even a bigger upside,” Dr. Wise added.

What about side effects?

According to Dr Wise, there are three main side effects from the treatment, including:

• Dry mouth
• Marrow side effects (low red blood cells or platelets)
• Stomach upset and fatigue

“Although the dry mouth with Pluvicto is really not very significant. It comes on very slowly so the dose can be reduced or the number of treatments can be minimized in order to prevent that toxicity from becoming significant.”

“Pluvicto can lower the red cells, the white cells or the platelets. And so it’s important that those are monitored very carefully before and after each cycle to be sure that the next cycle should be continued at the same dose.”

“And finally, some people report some stomach upset and fatigue. Pluvicto has only been studied in men who’ve already been treated with prior chemotherapy and a novel hormonal agent. So these are men with metastatic disease who’ve been through a lot. The cancer has led to symptoms, the treatment has led to symptoms. So any fatigue or nausea is not to be minimized,” Dr. Wise added.

“But generally we’re talking about a week where there’s some fatigue, some stomach upset, usually not requiring medications, and then really those symptoms tend to dissipate and men tend to do really well.”

Mutations in HRR genes can be hereditary (germline) or sporadic or nonhereditary (somatic).

Around 5% to 15% of prostate cancers develop due to a risk inherited from family (hereditary cancer). When men have certain special gene changes they inherited, the prostate cancer can be tougher than in those without these gene changes.

If a person’s dad, brother, or son had prostate cancer, his chances of inheriting it become two to three times higher. This chance gets even more likely if more family members had prostate, breast, or ovarian cancers. The age when a close family member got cancer matters, too.

Up to 15% of men with cancer that has spread (metastatic cancer), and 10% of men with cancer that hasn’t spread, have changes in certain genes related to fixing DNA, like BRCA2, BRCA1, ATM, CHEK2, PALB2, and other DNA repair genes (MLH1, MSH2, PMS2, MSH6).

Molecular testing “gives us more tools to personalize that treatment,” Dr. Hannah McManus, a genitourinary oncologist, at Duke Cancer Center Genitourinary Clinic, told SurvivorNet.

“It gives us more information to understand how a cancer may respond to a treatment. And it gives us more information to make other new treatment options, things like clinical trials or potential options for you, as well.

“And I think that’s just going to increase as we do more and more studies and understand how these genetic changes drive prostate cancer. It helps us personalize that treatment and our discussion together even more. So I think it’s really exciting.”

National Comprehensive Cancer Network (NCCN) guidelines recommend germline and tumor testing for HRRm in all patients with metastatic prostate cancer and consideration of testing for patients with regional disease.

“I think really any patient with prostate cancer can ask their doctor if they should get germline genetic testing or genetic testing, looking to see if they have an inherited mutation that may have made them more at risk for prostate cancer. That can impact your treatment and it can impact your family and potential screening for cancers for them in the future,” Dr. McManus added.

Lynparza and Rubraca are approved for men with metastatic castrate-resistant prostate cancer (mCRPC) either before or after chemotherapy, as monotherapy drugs. Monotherapy refers to when doctors use one specific drug to fight your cancer instead of a combination of drugs.

These medications are only for patients who have certain mutations, such as BRCA 1 or 2 mutations.

More recently, the FDA approved a fixed dose combination of two drugs (niraparib and abiraterone) with prednisone. This new medication is a once-daily dual-action tablet (brand name Akeega). It includes a PARP inhibitor (niraparib) and an androgen biosynthesis inhibitor (abiraterone acetate).

Akeega is indicated with prednisone to treat adults with mCRPC and BRCA-positive mutations.

Other good news for metastatic castration-resistant prostate cancer has been the recent approval by the FDA, of the combination of enzalutamide (brand name Xtandi) and talazoparib (brand name Talzenna).

Talzenna is also a PARP inhibitor and this new combination (Xtandi + Talzenna) is approved for the treatment of adult patients with homologous recombination repair (HRR) gene-mutated metastatic castration-resistant prostate cancer (mCRPC).

It’s important to note that this medication is an option for adult patients with homologous recombination repair (HRR) gene-mutated metastatic castration resistant prostate cancer (mCRPC).

HRR gene mutations occur in approximately 25% of patients with advanced prostate cancer.

What is a homologous recombination deficiency?

Homologous recombination deficiency, or HRD, is a genetic factor in which cells have difficulty repairing themselves. These cells can then become cancerous. The reverse is also true: Genetic mutations in cancer can also cause HRD.

“Homologous recombination is when our genes are being transcribed cell is being split into two daughter cells,” explains Dr. David Engle, a gynecologic oncologist at Baptist Medical Group in Memphis, Tennessee. “If there is a replication error that occurs while those two cells are being split, then you have homologous recombination where they go back incorrectly.”

According to Dr. Engle, the human body has a set of genes whose sole purpose is to scan and correct these ‘transcribed’ cells. “They’ll actually remove that abnormal area and place the correct sequence back in there,” he says.

But because this process involves several different genes, if there is a defect in any one of them, it may affect the body’s ability to rewrite damage, or incorrect codes, that are put into our genome. “If we have the wrong codes, that could potentially lead to cancers,” adds Dr. Engle. “Meaning, if our genes are not correctly interpreted from the parent cells, that may increase our risk for developing cancer.”

Provenge works differently from other cancer treatments, such as chemotherapy or hormone therapy. Unlike these treatments, this drugs may not lower your PSA level. The goal of treatment with Provenge is not to lower PSA level, it is to extend life and activate your immune system to fight your prostate cancer.

When is the right time for Provenge Immunotherapy?

It may be considered before or after receiving other treatments for advanced prostate cancer. Provenge has no contraindications, and does not preclude other treatments for prostate cancer.

Common side effects

The most common side effects are generally mild to moderate and are well-tolerated.

Most infusion-related side effects are resolved within 1 or 2 days.

However, there are potential risks associated with this drug. Around 71% of men treated with Provenge developed an acute infusion reaction.

The most common adverse events were chills, fever, and fatigue.

Only 1.5% of men discontinued their treatment with due to adverse events

There were several other potential side effects as well. Before beginning any new treatment, it’s important to discuss potential side effects with your doctor or medical team.

To help manage the side effects, the healthcare provider may:

• Reduce the dose
• Delay the dose
• Stop the medication

Side effects are usually worst at the beginning of treatment, but they should gradually improve the longer you are on the medication. The first month on maintenance therapy can be a little rocky, since doctors are still trying to adjust the dose for the patient.

After the first month or two, you should level out and start to feel more comfortable on the medicine.

Do I have to pay for a clinical trial?

Most of the time, when a person takes part in a clinical trial, the study’s sponsor pays for the treatment and any additional care (like extra doctor visits) that may be required during the trial. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should make sure they ask what exactly will be paid for before signing up to be part of a trial.

The Affordable Care Act also mandates that health insurance companies pay for routine patient care costs while people are enrolled in clinical trials. This means that any care that would normally be covered for a cancer patient is still paid for throughout the trial, according to the American Cancer Society.

Clinical trials: What else to consider

In the U.S., all new drugs have to go through clinical trials before the FDA will approve them. In addition to being potentially live-saving for patients, these trials are also necessary to advance science and cancer treatments.

However, participating in a trial comes with risks as well, and it’s important to talk to your doctor about this before getting involved in one. Some risks to consider are:

• The chance of harm and/or side effects due to experimental treatments
• Researchers may be unaware of potential side effects for experimental treatments
• The treatment may not work for you, even if it has worked for others

Still, joining a clinical trial comes with benefits as well. You will be given access to treatments that could be life-saving, but simply haven’t made it through the approval process yet.

However, just because you’re willing to take part in a clinical trial doesn’t necessarily mean you will be able to join. These trials have specific criteria that patients need to meet in order to take part. At the end of the day, even though these trials can have incredible results and provide you with access to cutting-edge therapies, these are controlled experiments.

For each trial, there will be certain inclusion and exclusion criteria.

However, if you are not eligible to participate in a trial, you may still be able to get access to the new drugs due to recent legislation.

Sometimes, patients may be excluded from certain trials if their cancer has spread to their brain. If the metastases aren’t under control, the patient may be unable to participate because researchers are concerned that they won’t be able to complete the whole study.

There are options for people who may not be eligible for the clinical trials they wish to participate in, but still want to try the therapies.

A few years ago, the U.S. passed something called “Right to Try” legislation. This gives terminally ill people access to highly experimental drugs that are in “phase one” of the clinical trial process.

Your doctor may also request access to a single patient IND (investigational new drug) on your behalf, which can also give access to treatments that the FDA has not yet approved.

Before you enroll in a trial, you must be given the opportunity to read the consent documents fully and to ask any questions you may have. The documents will likely contain the following:

• The purpose of the research
• Any risks and benefits expected from the research
• Information about procedures that may cause discomfort (like frequent blood tests)
• Any alternative procedures the patient might consider instead
• How the patient’s information will be kept private
• How long the study is expected to take
• A form confirming you are participating in research voluntarily
• Whether any compensation or additional medical care is available if some sort of injury occurs
• The patient’s rights (like the right to stop research in the middle of the trial)
• Contacts for any patient questions

There are several different medications on the market that work for prostate cancer survivors. We’ve all heard of Viagra and Cialis, as well as different devices including the Vacuum Erectile Device (VED).  A prosthesis is also an option.

“Prostate cancer can require couples to think more broadly about their intimacy,” Dr. Brooks explained. He suggested men talk about with their urologist and perhaps seek counseling with a sex therapist.

George Crawford, a native New Yorker, has been through a lot in his 81 years. He lived through World War II, he was in the Navy during the Cuban Missile Crisis; he’s done a lot of living and he has a lot of stories to tell. But receiving his prostate cancer diagnosis still came as a big shock.

“When my doctor told me that I had stage four cancer, a very, very aggressive cancer, he didn’t say in so many words I had four months to live … but he gave every signal that he could that this was not a good story at all,” George says. “I told my wife, and I told immediate family, but I asked them not to tell anybody else because I hadn’t even come to terms with it myself.”

Despite his grim prognosis, George happened to get lucky. He was undergoing a summer-long regimen of chemotherapy when his doctor went away to a symposium and was told about a drug called Zytiga — a type of hormonal therapy that blocks the production of androgens, which are the hormones that help prostate cancers to grow. “He came back and he said, there’s a new protocol, you start taking Zytiga as quickly as you can,” George says. “He said I [was] really, basically, the first person in America to do this.”

And the Zytiga worked for George — over time, his prognosis got better and batter. And after all was said and done, George says something good did come out of his cancer journey — it brought his family closer together.

For as long as he can remember, Mike Crosby wanted to fly.

When he got prostate cancer, his wife explains, “I knew he would land this, just like he landed everything else.”

Crosby is now 63-years-old. He’s a retired Naval Commander whose call sign was “Bing.” He beat prostate cancer three times and has now turned his diagnosis into a new life of service by offering much-needed hope and resources to veterans also dealing with the disease.

“We’re not taking care of these guys, and we need to do a better job,” Crosby, 63, told SurvivorNet from his home in San Diego.

Make sure to read Crosby’s full Story