Free advice on starting your prostate cancer journey.
I’m not a doctor and I don’t play one on TV. I didn’t stay in a Holiday Inn Express last night either. But I’ve been on the prostate cancer journey for a while and I’ve learned a few things that I can pass on to you as you begin your journey. Lots of men join this support group shortly after a prostate cancer diagnosis, or perhaps after their doctor first expresses concern about possible cancer, and they all have the same questions, so I figured I would write down a few answers and point you toward the rest of them.
Your mileage may vary. As you will learn, prostate cancer is a very complicated disease and there are many paths on the journey. Some men may disagree with what I write here. Some may have had a completely different experience. That’s fine. Try to learn from everybody. My only goal is to get you started and to point out a couple of errors I made. This is the big picture from 30,000 feet and you will need to get down into the weeds. Good luck and hang in there. You got this!
By the way, just ignore the menu at the top. I hid this page on a website I run for an aviation study guide I used to write. I retired a couple of years ago and another guy writes the study guide now, but I still run the website for him and this was a convenient place to post these remarks.
First, don’t panic. Prostate cancer usually grows very slowly and you’ve probably had it for several years already. There is usually time to gather information and make a good decision about treatment.
You must choose your treatment. That’s the big problem. Many cancers have a single treatment path, but prostate cancer has many treatment options and they all have pros and cons. You must do your homework and select the treatment that’s right for you. It’s a very difficult decision and you will probably agonize over it. Sorry, but that’s just how it is.
Prostate cancer is thought of as an old man’s disease, but it can strike men in their 40s and 50s too, and those cases tend to be more aggressive. Tell your buddies to get checked, even if they’re young. All treatments suck, but they suck less if the cancer is caught early.
A PSA blood test is the primary way a doctor screens for prostate cancer. For a while, the medical community was not recommending PSA testing on a regular basis due to false positives, but that recommendation has been reversed. PSA testing is now recommended.
Some men die from prostate cancer, but most don’t. Your situation is unique, of course, but statistically there is a 70-80% chance of a complete cure. In the 20-30% of cases where the cancer returns, there are additional treatments available, which are called “salvage” treatments.
Lots of guys join this group after being told they might have cancer, so here’s a typical sequence for diagnosis. Once again, your mileage may vary.
In many cases, your doctor will see a high or rising PSA and/or feel a lump in your prostate during the “finger wave,” also known as the digital rectal exam or DRE. That’s often the first indication and starts the diagnosis process. Early prostate cancer usually has no symptoms.
PSA is produced by both prostate cells and by prostate cancer cells. If it’s too high or rising faster than it should, you have too many prostate cells and might have a growing cancer. A slow rise with age is normal and even a non-normal PSA can be okay. You don’t know you have cancer yet.
If your doctor feels a lump, your chances of cancer are higher, but you still don’t know you have it. Sometimes tumors in the prostate are benign.
Your doc will probably order an MRI. If the MRI shows a suspicious lesion, the radiologist will give it a PI-RADS score from 1 to 5. One is a very low chance of cancer and five is a very high chance. No matter the score, you still don’t know you have cancer yet.
Next will come a needle biopsy of your prostate. A complete stranger will stick a needle into your prostate multiple times to withdraw samples. It’s not fun and you would never do it for recreation, but it’s not as bad as you imagine. As with most medical procedures, the worry beforehand is worse than the actual procedure.
There are several different kinds of biopsies. Sometimes the needle goes in through your rectum from a probe in your you-know-where and sometimes the needle goes in through your perineum, which is area between your scrotum and anus. Sometimes the needle is guided by ultrasound and sometimes it’s guided by MRI. Sometimes there are only three or four cores and sometimes there are 12 or 16 cores. It all depends on what your doctor orders and what technology is available where you live.
Yep, it sounds pretty awful and it’s not fun, but it’s really not as bad as you think. There isn’t much pain and sometimes you get a valium or mild sedation. The anxiety beforehand and the humiliation during the procedure are the worst parts, but remember you’re not the Lone Ranger. There are over 260,000 cases of prostate cancer diagnosed in the US every year. Saddle up and cowboy on.
A pathologist will examine the cores from your biopsy and give you the bad news. Now you officially have cancer.
There is a lot valuable information in the pathology report that you will need later, so make sure you get a copy of it.
Free advice: For some reason, my doctor ordered an MRI-guided biopsy of just the tumor that showed on my MRI. It was just four cores and showed cancer. Later on, I had to have a second biopsy of the entire prostate (16 cores) to look for cancer in the rest of the gland. Prostate cancer is multifocal. That means it usually pops up in several places inside your prostate at once, not just in a tumor, and the MRI can’t see the little cancers. My second biopsy showed cancer outside the tumor and also more aggressive cancer than the first biopsy. That second biopsy delayed my treatment, so I wish my doc had ordered a full-prostate biopsy at the start. Be sure to ask your doctor what kind of biopsy he’s ordering and why.
Once you know you have cancer, you can start figuring out how to treat it. You should now know your PSA, Gleason score, grade group, stage and the number of biopsy cores with cancer and how much cancer was in each core. You and your doctor will use that information to determine your treatment plan and you’ll need it for some of the websites mentioned later as well.
The guide I will recommend below explains Gleason scores, grade groups and all the rest, but be aware that staging for prostate cancer is different than staging for other cancers. It’s essential to understand the details of your particular cancer diagnosis, so be sure to read the recommended guide(s) carefully.
There are lots of treatment options, but they can generally be broken down into these categories:
Active surveillance – monitor the cancer to see if treatment is needed later
Surgery – remove the prostate, seminal vesicles and surrounding lymph nodes
Radiation – there are many types of radiation treatments
Focal treatment – treat part of the prostate with ultrasound, heat or cold
Hormone therapy – control the cancer by controlling your hormones
Chemotherapy – control the cancer with chemicals
Palliative care – no treatment; just make you feel better
You will need to research all of those options to determine which treatment, or combination of treatments, is right for you. Your doctor will help, but the final decision is yours alone.
As stated above, there are many different kinds of radiation treatments, but they can be broken down into two general categories; external beam, where some kind of radiation is fired into your prostate from outside, and brachytherapy, where some kind of radioactive material is placed inside your prostate. As usual, there are pros and cons to each treatment.
The primary side effects of prostate cancer treatments are erectile disfunction and incontinence. Different treatments have different cure rates and different levels of both severity and time frame for the side effects. Doing the risk vs reward calculation will keep you up at night.
As I’ve mentioned, you need to do a lot of homework before you can make your decision about treatment. Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer was written by a legend at Johns Hopkins and is considered the classic book on the disease, but it was last updated in 2018 and there have been some advances since then. Still highly recommended for an in-depth understanding though.
There is lots of good information on the Internet and you should start your homework there. Here are some recommendations:
Prostate Cancer Foundation Guides The Prostate Cancer Patient Guide is especially good with lots of details. You need to give PCF your email address to download the free guide, but they haven’t spammed me yet. That particular guide is a great way to get smart about this stuff and the one I recommend. The other guides on that page are pretty good too.
NCCN Guidelines for Patients Good information, but less detail than the PCF guide. These guides are more of a broad overview and a good place to learn the basics. You may want to start here and then expand your research to the PCF guide. Select your cancer stage from the list about halfway down the page and download the free guide. See below for more information about the National Comprehensive Cancer Network.
National Cancer Institute The NCI is part of the US National Institutes of Health. Click the link in the Treatment section for online information about prostate cancer and also open the “View more information” dropdown box.
American Cancer Society More good information online.
Prostate Cancer Free Cure rate by risk group and treatment. Take a few minutes to learn how to use the interactive charts.
Dr. Miller on Treatment Decisions A very interesting presentation.
Second Opinion on Pathology Dr. Jonathan Epstein at Johns Hopkins is “the guy” for second opinions on biopsies. You can request a second opinion from his team on the Johns Hopkins website.
Prostate Cancer Research Institute Dr. Mark Scholz is a medical oncologist who runs PCRI. He is openly biased toward radiation and against surgery, but has good information on all treatments. Scroll through the Popular Videos for interesting topics.
PCRI Video about your Sex Life Spoiler Alert: It ain’t good.
The Partin Tables from Johns Hopkins predict whether your cancer has spread beyond your prostate based on the information you received from the biopsy.
The Han Tables, also from Johns Hopkins, predict the probability of recurrence after you’ve had treatment.
The Nomograms from Memorial Sloan Kettering help predict outcomes for various treatments.
The National Comprehensive Cancer Network consists of 32 leading cancer centers around the United States, including Mayo Clinic, Yale, UCLA, Stanford, Huntsman, Cleveland Clinic and so on. You can create a free account and log in to see the recommended treatment for your particular cancer. It’s basically a cookbook that doctors use in those high-end centers. You have to do some digging to find the prostate cancer section and figure out what they’re talking about, but it’s very informative.
You don’t need a referral to see a doctor at a leading cancer center. Go to the website, find the department you want (usually Urology for surgery or Radiation Oncology for radiation treatment) and either call them up or use the online form to make an appointment. I did that at both Mayo Clinic and UCLA. Some places even have Zoom meetings so you don’t have to travel. (Unsolicited plug: I went to the Mayo Clinic in Rochester for an in-person visit and also for a Zoom visit and they were simply outstanding. I chose treatment somewhere else however.)
Leading cancer centers like Mayo Clinic are prepared for people traveling to them for treatment. That’s what they do. They can help with hotel rooms, transportation and so on.
Free advice: When you call up a cancer center for an appointment, don’t just take the first available appointment with anybody. Research the doctors in that department and select your guy, and then make an appointment with him. It’s better to wait six weeks for your guy than to wait four weeks for somebody else and then another six weeks for your guy. I made that mistake.
Experience matters. Be sure to select a surgeon or radiation oncologist who has been treating prostate cancer for several years. Let the new guys practice on somebody else. Outcomes are usually better at high-volume cancer centers for that reason. I chose radiation and my radiation oncologist has 39 years of experience.
If the cancer hasn’t metastasized and left your prostate, you have a good chance for a cure. If it has metastasized and spread, it’s probably uncurable and will need to be treated for a long time, probably for the rest of your life. Fortunately, it takes a long time for prostate cancer to metastasize and there are good treatments even if it does. All is not lost, but it’s another reason to tell your buddies to get checked sooner rather than later.
If the cancer has metastasized, it’s still prostate cancer just living in a new place. For example, if it spreads to your bones, it’s not bone cancer. It’s just prostate cancer in a new home.
Depending on your cancer risk, your doctor may order a bone scan and a CT scan. Both are used to look for metastatic cancer in other parts of your body. Prostate cancer normally progresses from the prostate to the surrounding lymph nodes to the bones and then to other places.
Free advice: There is a new technology called a PSMA PET CT scan that is more accurate than bone scans and regular CT scans. It can find metastatic prostate cancer anywhere in your body, but you may have to specifically ask your doctor about it because it’s not available everywhere yet. I had a bone scan and a CT scan at home and then flew to UCLA for a PSMA PET scan.
Finally, remember that cancer is big business. Some doctors will want to treat you with whatever treatment they can do, even if it’s not the best one for you. That probably happens less at the big cancer centers because the doctors there are on salary and have plenty of work, but you still need to be your own advocate and do your homework. Did I mention homework?
Well, that’s all I can think of right now. As before, I wrote this for the guy who just heard he has prostate cancer and is still in shock. I wanted to give some basic information and show you where to find more. It’s just the tip of the iceberg, but I hope it helped. Good luck!