Prostate Cancer Archives

Prostate cancer is the most common cancer in men in the US, after skin cancer. Almost all prostate cancers are adenocarcinomas (cancers that begin in cells that make and release mucus and other fluids). Prostate cancer often has no early symptoms.

More resources for Prostate Cancer from Patient Empowerment Network.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerable media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

PCRI: Managing Side Effects of Chemotherapy

This video was published by the Prostate Cancer Research Institute on June 25, 2019 here.

 

Transcript

Hi, I’m Dr. Scholz. Let’s talk about prostate cancer.

In the video today we want to cover how to minimize side effects from chemotherapy. Fortunately, chemotherapy is not often required with prostate cancer; hormonal therapy is very effective. We reserve chemotherapy for more advanced situations. Usually, men that have some sort of metastatic disease. We’re covering this particular section in Indigo, that is men that have enlarged lymph nodes. In particular, in High-Indigo studies are now showing that a short course of chemotherapy can improve cure rates and improve survival.

People enter into giving chemotherapy with more trepidation. Everyone hears that word and you think side effects: Hair loss, nausea, fatigue, and these are certainly issues. Fortunately, there are a number of measures that can be implemented that will reduce those side effects, and that’s what we want to cover in this video. We’ll be taking the various side effects one-by-one. In some cases, there isn’t a lot you can do, and in other cases, you can make a big difference.

So let’s jump in first and talk about the side effect of fatigue. This can already be an issue in men that are on hormonal therapy and adding chemotherapy such as Taxotere can make it worse. Over and over we stress when men are on hormone therapy that they should be exercising. This same fact is true for men on any kind of chemotherapy, and it also goes for radiation as well. The men who exercise and stay strong are going to do much better and have much less fatigue. So consider that a non-negotiable reality, although men on chemotherapy may be so tired they may feel that they’re incapable of exercising. If that’s the case, then men should simply go through the motions. Move their body around even without the weights. Continue to remain active and mobile. This will help people get through the fatigue that’s caused from treatment.

When we’re talking about reducing side effects there are a number of different ideas regarding reducing the dosing of the medicine, the frequency of the medicine, and I’ll just share a few thoughts along those lines. Taxotere, the most commonly used type of chemotherapy is given every three weeks. It is possible to give a smaller dose on a weekly basis, and studies show that the side effects are reduced. Of course, that’s greater inconvenience, more doctor visits, but the weekly dosing regimen is milder, so that’s one consideration. Another possible alteration is to reduce the number of cycles. We frequently ascribe to the standard study results would suggest that six cycles is optimal for getting the maximum benefit from giving Taxotere; however, most of the side effects occur in the fourth and fifth cycle, and probably most of the benefit occurs in the first four cycles. So men that are contemplating this type of treatment but want to try and minimize side effects can consider going with only four cycles rather than six. This is a bit unorthodox and perhaps the cure rates won’t be quite as good, but it certainly will cut back on side effects.

So what other things can be done to combat fatigue? Well, many doctors use daily cortisone with prednisone in conjunction with the Taxotere. That has some benefit. It also has some potential additional side effects. Many doctors consider that sort of standard. We don’t in our practice, but men that are having excess fatigue, the addition of some prednisone five-ten milligrams a day may be helpful.

Another thing to consider is a medicine that’s approved for the treatment of narcolepsy. It’s called modafinil or Provigil. It’s sort of an upper type medicine that may help counteract fatigue in a dose from 100-200 milligrams a day.

Another idea is to consider switching Taxotere to another type of chemotherapy called Jevtana (or cabazitaxel). Studies aren’t clear on this but in my own experience and the experience of other experts, it seems like Jevtana has fewer side effects than Taxotere. So men that are running into excess fatigue or other problems with Taxotere can consider switching over to Jevtana. The medicine is given a similar three-week type protocol just like Taxotere.

So fatigue is sort of the big issue with Taxotere. In the old days, we used to be worried about nausea, which is common with all types of chemotherapy, it turns out that modern anti-nausea medicines are incredibly efficacious now. Medicines such as Zofran—an oral agent or can be given intravenously at the time of the chemotherapy administration—usually eliminate nausea altogether. There are other new agents that can be used as a backup if the Zofran is not doing the job, and so these days, although nausea used to be a very prominent issue, we don’t encounter it much anymore.

What about hair loss? Hair loss is occurring in up to 50% of people that take these agents, Taxotere or Jevtana, and the hair loss is reversible but hair loss can be very bothersome cosmetically to people and there are new ice caps that can be worn during treatment. They aren’t FDA approved yet and so it may involve a significant out-of-pocket expense. The ice caps are applied an hour or two before the chemotherapy and because of the cold blood flow is shunted away from the scalp and hair loss, therefore, is avoided.

So hair loss, fatigue, nausea and vomiting, these historically have been the big problems with any kind of chemotherapy. There’s a list of some other issues we’ll quickly and shortly address because they’re mostly correctable.

Low blood counts from chemotherapy which can place people at risk for infection can now be counteracted with an injectable medicine called Neulasta or neupogen. Our policy is to give this type of medicine in everyone who gets chemotherapy. You might want to discuss this with your doctor because some centers wait until people get a serious infection before they initiate these medications. So policies vary from office to office, but waiting around for an infection to develop seems like a rather poor plan and my recommendation would be to talk to your doctors and ask them to administer these prophylactics at the time of chemotherapy.

Chemotherapy can cause an effect on the taste buds and making food taste bad or metallic. If people keep some ice in their mouth during the infusion and for about an hour after the chemotherapy infusion, the blood, again, is shunted away from that part of the body and the incidence of problems with the taste buds is dramatically reduced.

The same thing can be said for preserving fingernails. Especially with the weekly administration of Taxotere, damage to the fingernail growth can occur. The placement of the fingers on some ice—some blue ice for example—during the Taxotere infusion and shortly thereafter shunting blood away from that area and thus the exposure of the fingernails to the Taxotere in the blood will reduce the incidence of fingernail damage and in our experience eliminate the risk altogether.

Last but not least, and this is a more common side effect with the weekly Taxotere, and that is that the Taxotere can get into the tears and then irritate the lining of the tear ducts. In serious cases the irritation becomes bad enough it can cause some scarring or closure of the tear ducts. This is a situation patients will complain and say the tears are coming out of my eyes, obviously the tears aren’t draining through the tear ducts anymore. This is a sign that you need to visit the eye doctor and they can place a small little tube in the tear ducts, open it up again, and the drainage—normal drainage—will ensue. The problem is that if you don’t do that the scarring theoretically can become permanent. So anyone on Taxotere that starts to notice increased tearing should visit the eye doctor and have their tear ducts checked out so that a stent can be placed which can be later removed after the Taxotere treatments are over.

So the use of Taxotere or its backup Jevtana is becoming more common now that studies are coming out showing that there’s a survival advantage for men in the Indigo stage who have pelvic lymph node involvement. Better cure rates, better survival all justify implementing a medicine that does have some downsides, some side effects, but if these side effects are handled wisely many of them can be bypassed or at least minimized and made tolerable so that people can get through their protocol and get on with their lives.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Triage Cancer’s Quick Guide to Health Insurance: Employer-Sponsored & Individual Plans

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Triage Cancer’s Quick Guide to Health Insurance: Medicare

This guide was originally published by our partner, Triage Cancer, here.

2021-Medicare-Quick-Guide

 

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Complete Guide To Mindfulness

Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience […]

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Erectile Dysfunction After Prostate Cancer Treatment

This podcast was originally published by City of Hope Radio here.

Topic info: Patients with prostate cancer that hasn’t spread beyond the gland itself have a broad range of treatment options – including surgery, radiation therapy, and active surveillance. However, with those treatment options come certain side effects such as incontinence, bowel function and erectile dysfunction.

Many men will have ED occasionally, and this is not cause for any worry. However, if ED becomes a consistent problem, it can cause emotional distress, impact your quality of life and may be an indicator of an underlying health issue. If you are suffering from ED, talk to us. Our experts at City of Hope have many effective treatment options available for you.

In this segment, Jonathan N. Warner, MD., discusses treatments for erectile dysfunction after prostate cancer.

Living with Prostate Cancer

This blog was originally published on Everyday Health here.

What to Know About Prostate Cancer

Prostate Cancer Stages: What Do They Mean?

Prostate Cancer Stages: What Do They Mean?

Determining the stage of your prostate cancer will provide important information on how you’ll be treated. Here’s what you should know.
9 Myths About Prostate Cancer You Shouldn’t Believe

9 Myths About Prostate Cancer You Shouldn’t Believe

About 1 in 10 men develop prostate cancer at some point in their life. Make sure you know the facts.
FAQs About Prostate Cancer That Has Spread to the Bones

FAQs About Prostate Cancer That Has Spread to the Bones

Learn what the diagnosis means for your health and your future, and what you can do to manage your care.
Diagnosed With Metastatic Castration-Resistant Prostate Cancer: What’s Next?

Diagnosed With Metastatic Castration-Resistant Prostate Cancer: What’s Next?

If you have this type of prostate cancer, your therapy is no longer controlling the disease. Here’s what you should know.

Tips to Help You Manage Prostate Cancer

Treating Prostate Cancer: How to Prevent ‘Decisional Regret’

Treating Prostate Cancer: How to Prevent ‘Decisional Regret’

There are lots of ways to treat prostate cancer — but sometimes, that can lead to confusion or even regret.
5 Ways to Boost Your Quality of Life During Prostate Cancer Treatment

5 Ways to Boost Your Quality of Life During Prostate Cancer Treatment

Add these strategies to your prostate cancer treatment regimen to boost your physical and mental health.
7 Steps to Take After a Prostate Cancer Diagnosis

7 Steps to Take After a Prostate Cancer Diagnosis

Prostate cancer is a common, slow-growing cancer, with overall survival rates over 90 percent. Here’s what you can do to get on the right path after y…
What to Eat When You Have Prostate Cancer

What to Eat When You Have Prostate Cancer

A balanced diet rich in fruits, vegetables, and whole grains can provide fiber, antioxidants, and other nutrients essential to good health.
8 Symptoms of Advanced Prostate Cancer and How to Manage Them

8 Symptoms of Advanced Prostate Cancer and How to Manage Them

Pain, fatigue, and loss of appetite are common symptoms of advanced prostate cancer and its treatment. Here’s what you can do to feel better.

Prostate Cancer Support Groups

This resource was originally published by the Prostate Cancer Foundation here.

We understand, there is a life before you found out you had cancer and life after you received your diagnosis. The new life brings with it uncertainty, fear, anger, sadness, and more. But you are not alone. Each year over 150,000 men are diagnosed with prostate cancer.

Even with so many people, you don’t know who to talk to; who to listen to, or what your future will hold. You are scared, unsure, alone. Your family and friends may be wonderful, loving, and supportive, but chances are they have not faced what you are facing. They mean well… they just don’t know.

A prostate cancer diagnosis can be terrifying and alienating. Thankfully, there is somewhere to turn for help for both you and your caregiver: support groups.

Support groups are a community of people with a similar diagnosis or challenge who gather together to share knowledge, encouragement, and emotional comfort.

These groups come in many shapes and sizes. Some are large online communities with many people to answer your questions.  Some are sometimes facilitated by a mental health professional, a person diagnosed with an illness, the family of someone diagnosed, or a medical expert in the specific field. They can be held in person, online, or by phone. You may want to check out a few groups to find one that you are comfortable in.


  • Genome Scanned

    PROSTATE CANCER AND VETERANS

    Visit the Prostate Cancer and Veterans Facebook Group

  • Genome Scanned

    NEWLY DIAGNOSED PROSTATE CANCER

    Newly Diagnosed Prostate Cancer Facebook Group

  • Genome Scanned

    PROSTATE CANCER CAREGIVERS

    Prostate Cancer Caregivers Facebook Group

  • Genome Scanned

    METASTATIC PROSTATE CANCER

    Metastatic Prostate Cancer Facebook Group

  • Genome Scanned

    PROSTATE CANCER SURVIVORS

    Prostate Cancer Survivors Facebook Group

Why should I join a prostate cancer support group? Because you could:

  • Gain instant camaraderie and support. You will have someone to talk to and feel less alone.
  • Become empowered to face your diagnosis and your treatment. The other participants may have suggestions about dealing with side effects, or suggestions for resources and providers.
  • Feel a reduction in depression and anxiety. Emotional support is essential to surviving and thriving with prostate cancer.
  • Learn coping skills and gain the tools necessary to deal with stress and to better adjust to your changing situation.
  • Talk openly about your feelings and fears. It’s no secret that men often find it difficult to express themselves – a situation amplified when sexual issues are a topic of conversation. A support group provides a safe environment to share.

There are several national organizations that can connect you with groups in your area.

Website Phone/Other
Us, Too – National ustoo.org (800) 808-7866
Us, Too – Local Chapter ustoo.org/Support-Group-Near-You
His Prostate Cancer – support for partners hisprostatecancer.com
Male Care malecare.org
Imerman Angels imermanangels.org (866) IMERMAN
(866) 463-7626)

Robotic Surgery for Complex Prostate Cancer

This podcast was originally published by City of Hope Radio here.

  • Topic Info: Cancer of the prostate gland is a serious health risk for men. In fact, nearly 240,000 American men yearly will be diagnosed with it. The good news is that prostate cancer is survivable, especially if it is detected early, before it can spread.City of Hope is a leader in the use of robotic-assisted prostatectomy to treat prostate cancer; our experienced team have performed thousands of robotic prostatectomies since the program’s start in 2003, more than any other medical center in the Western U.S. and second in the nation.

Prostate Imaging

This resource was originally published by the Prostate Cancer Research Institute here.

TRANSCRIPT:

“So your PSA number came back high. What now?”

Let’s say, like many men,  you’ve been getting your PSA checked every year as part of your routine checkup. In the past it has always hovered around 2 or maybe as high as 3.0, and suddenly it’s up to 5! Or maybe this is your first PSA test. Everyone knows that 4.0 is the magic number, anything above that means something is not right with your prostate. Right? Actually, it’s a lot more complicated than that, but for this video we’ll take that as a given. OK, so the number is high, what do you do? Well, if you’re like many men your first instinct might be something like this…

“Aaaah,  I’ve got prostate cancer! Cut the *****ing thing out”!

Unfortunately, there are a bunch of people in the medical community that will support and even encourage that instinct. It’s the wrong instinct.

Wait.

Slow down.

Take a deep breath.

Now just to be clear, this video is not advocating any sort of wonder-cure and we’re not downplaying how serious prostate cancer can be. Everything we’ll talk about here is backed up by good science, the latest technology, and highly trained medical professionals.

Let’s stop and talk for a second about the prostate. No offense to our creator, or to evolution or whatever you believe about human origins, but you couldn’t find a worse place to situate an organ, especially one that can be prone to problems. It’s…”down there”. And it’s in the middle of everything “down there”. Your urethra, that tube that carries urine out from the bladder, runs right through it… as do a couple of nerve bundles that control your ability to get and maintain an erection. And its located right in there close to the rectum. So, right in the middle of three really important systems.

OK. Back to your story. You’ve got the high PSA number. What’s likely to happen now?

Your general practitioner is probably going to want to refer you to a urologist. The urologist is almost certainly going to want to perform a needle biopsy and usually right away. It’s cancer! There’s urgency! Right?  Ummm. Not really. But we’ll get to that in a future video. For now, just know that for the overwhelming majority of men prostate cancer is very slow growing. You have time.

Here’s your first step in taking control. That’s what this is all about. Taking control of your own healthcare.

Unless your PSA number is crazy high (above 20 for example) or your GP has felt that something is wrong during the Digital Rectal Exam or DRE (that’s the finger up your butt exam that we all adore), you need to tell him or her that you want another PSA test. You see, that test measures a substance in the blood that the prostate gives off when it’s aggravated, and it can be aggravated by quite a few things other than cancer. Sexual activity, inflammation, certain types of heavy lifting, even riding a bike. So you’ll want to wait a few weeks, take it easy for the last few days, refrain from sex for 48 hours (you can do it), and retake the test. If your number has gone back down to near its normal level, you’re done for now. Just make sure to keep getting those yearly PSA tests and DREs.

If it remains high, then its time to move to the next step. Biopsy, right?

Nope. Not if you can help it.

The random needle biopsy, as it’s called, involves sticking a rather large needle into the area just in front of the rectum 12 times to remove samples, called cores, from different areas of the prostate.

It sounds horrible but, to be honest, it’s not terribly painful and it’s usually over in 10 or 15 minutes. A visit to the dental hygienist is probably just as uncomfortable. But it is invasive. Three percent of the men undergoing needle biopsies get infections, some of which are very serious. More importantly though, is the fact that the random needle biopsy is not very accurate. It can miss serious cancer or it can pick up low level, non-aggressive cancers that really don’t require treatment. (We’ll talk about the types of prostate cancer in a future video.)

The doctors who use the random needle biopsies don’t do it because they are mean or ignorant…maybe just a little slow to change. Until the last couple of years the needle biopsy was the best diagnostic tool that we had. Recent advances in MRI imaging have changed everything. The latest generation of MRI machines called 3 Tesla, or 3T machines, scan at a much higher resolution than the earlier machines. They enable radiologists to see all but the tiniest tumors. The tumors that they can’t see almost certainly don’t matter.

What improvements in imaging mean is that biopsies, when they are needed, can be targeted, right to the suspicious area in the prostate. No more random poking.

So, to summarize. If your PSA number comes back high:

Schedule a second PSA test.
Start doing some research. A good place to start is PCRI.org.
If the number is still high after that test, find an MRI center that does “Multi-parametric” testing using a 3T scanner. The MRI report will provide two types of important information:

The MRI measures the size of the prostate. The scan report will enable you to determine if your PSA elevation is proportionate to your prostate size. We’ll talk about this more in a future video. As regards cancer,  there are three possible outcomes:

No high-grade cancer. Further monitoring without biopsy is OK.
A high-grade lesion is detected.  Targeted biopsy is needed.
An ambiguous area is detected.  Another MRI in 6 months may be appropriate.

Scanning the prostate in men with PSA elevation is a brand new approach that is more reliable than the old-fashioned method of using 12 random needle sticks. However, this claim is only accurate when using the very latest state-of-the-art MRI technology at approved centers. This technology is so new that finding doctors willing to abandon the old random needle biopsy approach is still a major challenge.  Even so, there is a big payoff, being able to bypass those needles, those infections, and the inaccuracy is worth it.

Screening for Prostate Cancer

This resource was originally published by the Prostate Cancer Foundation here.

Screening for Prostate Cancer

Cancer is a frightening possibility, but today’s medical technology has put some powerful screening tools in our hands, and we know: early detection saves lives. The earlier you find out about cancer, the greater the likelihood that it can be successfully treated. Prostate cancer, in particular, is almost 99% treatable if detected early.

So when do you start screening for prostate cancer? Most guidelines recommend that men practice joint decision-making with their physician to make a screening plan, based on evaluation of multiple risk factors. Over time, as researchers have learned more about the factors that affect your chance of getting prostate cancer, recommendations for when to start screening have started to skew earlier. It’s important for you to take the lead in having a candid discussion with your doctor about your risk factors for prostate cancer.

The following questions can help you decide when to begin this conversation with your doctor.

Do you have a family history of prostate, ovarian, breast, colon, or pancreatic cancers among your male and female relatives? Some families share genetic mutations that make the development of certain cancers more likely. If you know or suspect this is true of your family, begin to discuss screening starting at about 40 years of ageLearn more about genetic factors that affect your risk of developing prostate cancer.

Are you African American? African American men have a greater risk of developing prostate cancer, and of developing aggressive disease, possibly due to as-yet-unknown genetic and socioeconomic factors; unraveling this mystery is an active area of research for the Prostate Cancer Foundation. The National Comprehensive Cancer Network guidelines recommend that you begin joint decision-making with your doctor starting at 40 years of age.

How old are you? The risk of developing prostate cancer in men who do not have other risk factors increases with age. If you don’t have any other risk factors, ask your doctor about screening starting at age 45..

Once you are over about 70 years of age, the US Preventive Services Task Force recommends you stop screening, with the rationale that the potential benefits do not outweigh the harms. Why? Many cases of prostate cancer are very slow-growing, and treatments can be taxing. Statistically, older men are more likely to die of other causes, even when they have prostate cancer. However, if you are a healthy man over 70, the Prostate Cancer Foundation recommends that you continue to discuss screening with your doctor. The decision about whether to screen past age 70 should be made on an individual basis.

The bottom line is that it is never hurts to talk with your doctor about screening. The ultimate goal is to catch active cancer early so it can be successfully treated, to give you the longest, healthiest life possible.

More about genetic factors and their influence on your risk

Genetic screening (called germline genetic testing) can offer powerful insight into your individual risk of developing cancer. Much of the newest research into cancer genetics has focused on identifying germline (ie, inherited) mutations that are positively associated with the development of various types of cancer.

If you have any of the following risk factors, you should discuss them with your doctor and consider genetic screening.

  • A personal history of metastatic prostate cancer
  • A blood relative with a known cancer risk gene mutation, such as a BRCA1/2 mutation or Lynch syndrome
  • Two or more family members with prostate cancer with a Gleason score ≥7
  • One male relative with metastatic prostate cancer and/or one who died of prostate cancer
  • Three or more family members on the same side of the family, with one or more of the following cancers:
    • Breast cancer
    • Ovarian cancer
    • Pancreatic cancer
    • Colon cancer
    • Other cancers, eg, melanoma

If germline genetic screening reveals that you or a member of your family have one of these critical mutations, your genetic counselor may suggest “cascade” screening. This is when many members of a family are screened to determine who else may have the mutation. With more information at hand, each member of the family can better understand their particular cancer risk, options for early detection, and how to reduce their risk for various other forms of cancer. The information you learn could save the lives of your brothers and sisters, parents—and your children.

Prostate Cancer Diagnosis: What’s Involved

This resource was originally published by Everyday Health by Laura Newman, here.

Last Updated: 6/28/2018
A variety of tests are used to help make the diagnosis.
Getty Images

Symptoms are uncommon with early-stage prostate cancer. The majority of men start the diagnostic process for prostate cancer before they become symptomatic. There are several potential tests that may be involved.

Among the most common are:

A Prostate-Specific Antigen (PSA) Test

The prostate-specific antigen (PSA) test is a blood test that may be offered to you as routine screening in the context of a checkup by a primary care physician or urologist.

But using the test for routine screening is controversial. Elevated results on a PSA test may occur for reasons other than cancer, such as an enlarged prostate, benign prostatic hyperplasia (BPH), or an infection in the prostate called prostatitis. Men who receive an elevated result may be referred for further testing. For this reason, the test should only be done after an informed conversation between doctor and patient takes place.

The American Cancer Society uses these parameters to evaluate PSA results:

  • A PSA test result below 4 nanograms per milliliter (ng/ml) means that 85 percent of the time, you won’t have prostate cancer.
  • A PSA between 4 and 10 is associated with a 1 in 4 chance of having prostate cancer.
  • If your PSA is greater than 10, you have a 1 in 2 chance of having prostate cancer.

But doctors have not adopted a uniform system for interpreting PSA. Thresholds for concern and reference ranges vary considerably. (1)

If your PSA test results are elevated you will likely be advised to have more tests.

A Digital Rectal Exam (DRE)

A digital rectal exam (DRE) is a physical exam of your prostate gland administered by a physician in the context of a general checkup or in response to symptoms suggestive of an issue with the prostate gland. During a DRE, a physician places a gloved finger into the rectum and checks for asymmetric areas or nodules and irregularities in the size, shape and texture of the prostate gland, and it may also be used to look for signs suggestive of prostate cancer.

Like the PSA test, suspicious findings on a DRE do not necessarily mean that you have prostate cancer. Rather, the results are considered in combination with PSA test results and symptoms a patient may have.

Concerns have mounted recently about primary care doctors’ ability to use the DRE effectively. A recent study published in the March–April issue of the Annals of Family Medicine found that only one-half of surveyed primary care doctors feel comfortable performing DREs. In fact, the authors of that study recommended against primary care doctors performing them. (2)

Transrectal Ultrasound and Real-Time Biopsy

If you receive an elevated PSA result or have suspicious findings on a DRE, your physician might recommend that you undergo a prostate biopsy. The most common test used for this is a transrectal ultrasound (TRUS), in which an ultrasound probe is inserted into the rectum and sound waves are used to create an image of the prostate gland.

During the ultrasound, biopsy samples are often collected from several areas of the prostate with a hollow needle. This is referred to as a real-time biopsy or a transrectal prostate biopsy. The biopsy samples are then analyzed in a pathology laboratory to see if cancer cells are present.

Important benefits of combining the two procedures include:

  • The ability to better target suspicious areas of high-grade (aggressive areas) and clinically significant tumors.
  • Helping to avoid false-positive diagnoses and overdiagnosis or sampling areas unlikely to contain cancer or aggressive cancer.
  • Getting a high-quality biopsy. (3)

MRI Ultrasound Targeted Prostate Biopsy

Magnetic resonance imaging (MRI) guided biopsies are also being used more frequently, with ultrasound or alone, to help guide a prostate biopsy. MRI scans are capable of revealing potentially cancerous areas in more detail than ultrasound.

Studies have emerged suggesting that fusing the two techniques — using MRI to identify suspicious areas before the transrectal ultrasound and biopsy procedure — might identify cancer more accurately than a TRUS biopsy alone. For example, a landmark study led by researchers at the National Cancer Institute’s urologic oncology branch found that the MRI-fused ultrasound technique detected more aggressive prostate cancer and fewer low-risk prostate cancers.

A joint statement issued by the American Urological Association and Society of Abdominal Radiologists supports fused MRI-ultrasound for men on active surveillance — men who, along with their doctors, have opted to watch a slow-growing cancer rather than treat it aggressively — and for men who have received elevated PSA test result but whose previous biopsies have tested negative for cancer. (4)

Preparing for Your Prostate Biopsy

To prepare you for the test, your urologist should tell you about the risks and benefits of having a biopsy. The most common complications following a prostate biopsy are having blood in the urine, rectum, or semen, a urinary tract infection, and acute urinary retention. These side effects usually pass quickly. Less commonly, erectile dysfunction occurs.

After this discussion with your doctor, you will be asked to sign a consent form. You may also be asked to discontinue some medications, such as anticoagulants, nonsteroidal anti-inflammatory drugs, herbal supplements, and vitamins for one to several days. On the night before the biopsy is scheduled, your doctor may ask you to do an enema at home. Eating lightly the day before is often recommended. You also may be asked to take an antibiotic the day before or on the day of the biopsy. (5)

When you come in for the procedure, you will be asked to lie still on your side with your knees bent. The doctor will insert a small finger-size ultrasound probe into your rectum. The probe lets the doctor see images of your prostate gland and helps determine where to inject a local anesthetic. The images the doctor sees also help guide the biopsy needle. Your doctor will take 10 to 18 tissue samples from the prostate gland, which will then be sent to a pathology lab. The entire procedure takes about 10 minutes. Your doctor will contact you with results usually within about a week.

After the procedure, your rectum may feel sore. You may see small amounts of blood in your stool, urine, or semen that last for several days or weeks. Antibiotics might be prescribed for several days to prevent infection.

Making Sense of Prostate Biopsy Results

If your biopsy reveals that some cells look abnormal, but may or may not be cancer, your doctor might recommend another biopsy. If your biopsy comes back positive, it means cancer cells were detected.

Your pathology report will include:

  • A Gleason score, which helps doctors predict how fast-growing the prostate cancer is
  • The number of biopsy samples that contain cancer out of the total number sampled
  • A diagnosis of each core or biopsy sample
  • The percentage of cancer in each sample
  • Whether the cancer is on one or both sides of the prostate gland (6)

Understanding Your Gleason Score

Your Gleason score is the sum of various “grades” the pathologist has given samples taken from the prostate gland. The more aggressive the cancer looks, the higher the grade. The lowest Gleason score you can receive for prostate cancer is a 6. These cancers are considered low-grade and unlikely to be aggressive. A Gleason score of 8 to 10 is more aggressive and more likely to grow and spread quickly. A cancer with a Gleason score of 9 to 10 is likely to be even more aggressive. (6)