Take a break. Start researching again later. Remember that most prostate cancers are slow growing enough that you can take the time you really need to research for yourself. The research is a process, and your brain often needs a break. Put it down, and pick it up again later.
When you talk to other people about their prostate cancer (PC) experiences, or their knowledge of, remember that every prostate cancer is different. Try to ask if they know the PSA & Gleason of the patient. Do they know how much cancer was found in the prostate (number of cores+)? Do they have any idea of the prostate size? Age of patient & overall health? This will help you compare apples to apples, and oranges to oranges, so to speak. If you are unsure of these facts regarding your own prostate cancer, return to Step 1 and Step 2.
In addition to speaking with people you know, there are some great discussion groups online for prostate cancer. This can be a great place to simply read posts and discussions for other people, or post your own questions. Look for people who tend to be objective, not overly emotional, and look for men who have a basic understanding of their personal cancer specifics. It is always a good idea to ask about experience with side effects, since they can often be understated or overlooked. But they are part of the Risk vs Benefit treatment decision. Side Effects are the risks you take. Make sure you get some honest information about them.
One other approach to inquiring a local physicians, patient experiences, and side effects is to consider visiting a prostate cancer support group in your area. All support groups are different, so don’t be discouraged if you don’t find the right one on the first try. In addition – you might consider just calling or emailing the support group leader/facilitator to ask some questions about resources, physicians, and hospitals in that local area.
- UsTOO International – Find a Support Group
- California Prostate Cancer Coalition – Find a Support Group
- Prostate Cancer Canada Network – Find a Support Group
Better questions will get you better answers. So developing good questions for your doctors and nurses is essential. Try talking in terms of Risk (side effects) vs Benefit (cancer control or response). These are words that are simple, but also scientific. It is language you can share easily with your medical professionals. So developing your questions for discussion with your doctors is essential. Try to avoid asking a question ‘off the top of your head’, and work on asking questions based on YOU. If you have worked through at least some of Step 1 & Step 2, you should have some basic understanding of what your medical records say about YOUR prostate cancer. Also, your doctor may know medicine, but he doesn’t know your personal priorities, fears, and needs like you do. And he probably knows some of your medical history, but he doesn’t know as much as you do about your overall daily lifestyle and history. All of these things are part of a good treatment decision. Take enough time to make the decision that you really want. It is worth the time you invest.
As one man put it, “I’m a walking file cabinet of information”. Watch this 4 minute video from Mayo Clinic’s Shared Decision Making program.
Also watch this short video – The Empowered Patient/Working your Dr Appointment – Jan Manarite, 2014, CURE Magazine
The urologist is the physician who did your biopsy. He is primarily a surgeon by training and it is likely he will suggest surgery, which is called radical prostatectomy (RP). Currently the 3 types of RP that are most common: (1) robotic laparoscopic (2) open surgery done through the abdomen (retropubic) (3) open surgery done through the skin between the legs (perineal). REF There are risks and benefits to all, but the most important factor in surgery choice is the skill of the surgeon.REF Prostate surgery is a very delicate, complicated procedure because of the anatomy, and side effects such as impotence and incontinence are very possible, even likely. One surgeon, Dr David Samadi describes this issue in this short video. Still, with the right research and preparation, it can be the right treatment choice for the right patient. But research has been revealing that RP risks may outweigh the benefits for men who are low risk (see Step 3). Take your time to make this decision. And make sure you have researched Active Surveillance, radiation, and other options thoroughly.
If you haven’t had a Multiparametric Prostate MRI, ask your doctor(s) if this is possible, and would help in treatment decision. It is recommended that patients wait at least 6 weeks (or longer) after biopsy before undergoing prostate MRI.
(See PI-RADs v2 from American College of Radiology.)
The radiation oncologist is the physician who is treats prostate cancer with radiation treatment (RT). If you haven’t consulted with a radiation oncologist for his opinion on radiation, you probably should. Without the perspective of the radiation oncologist, you will be making a treatment decision on limited information.
Since radiation is a type of technology, there are many different types, and new developments are common. Currently, these are some of the most common and most researched types of radiation for prostate cancer. Some are used alone, some are used together.