This is a message from Tom Yei, who has been battling prostate cancer for five years. His experience can help anyone who is newly diagnosed and their loved ones. Getting a diagnosis of prostate cancer can be scary and confusing. I hope this information will help. – Denise
I am Tom, and I am being treated for PCA (prostate cancer) and have been for the past five years.
I begin this blog post by making this declaration of PCA on purpose. It is very similar to how someone in AA (Alcoholics Anonymous) begins their sharing by stating that they are an alcoholic. For some, it may not yet be an acceptance of their disease but it is an acknowledgment of their disease.
I was told that I had stage four prostate cancer and that limited my treatment options. My first thoughts and questions were how long do I have to live. I was told that it was difficult to say and I would need to have more scans and testing but that I need to start treatment immediately. I was in a state of shock, denial, anger, depression and mostly fear. It took me many months before I was able to accept that I was in treatment for prostate cancer.
At the time of my PCA diagnosis, I thought that the doctors had all the knowledge and knew how I needed to be treated. And five years ago I was just in a new relationship and we had planned and paid for a trip overseas. PCA and the diagnosis threw me onto a roller coaster of emotions, up and down without any control. Especially when all the doctors and everyone I knew were urging me to go ahead and go on our trip. I thought they were encouraging me to go travel because I was going to die soon and I should travel while I could.
As it turned out the doctor was wrong. I did not have stage four prostate cancer and I know now that I had many other treatment options. Today I am at the point where I think that by sharing some of my experiences with PCA and the education I’ve gained over the past five years might be helpful to other men, their spouses, partners, family, and friends.
Let me begin by stating that I am not a doctor, and I am not offering any medical advice. What I have to share is about raising your awareness of PCA. For some of you this may be information that you already know and for others, some of this may come as a surprise.
Following this blog entry, I am including information and resources where much of the numbers and data come from. I have tried to be as accurate as I could but apologize if your own research finds some errors.
I am sharing some thoughts and opinions from my own experiences and from the experiences of others with PCA. I go to several PCA support groups where the sharing of information from fellow PCA men is invaluable. PCA is an incredibly complicated disease and does not fit well into standardized medical models as do some other chronic diseases. Being able to hear first hand what other men are experiencing provides valuable insight into my own treatment and I often hear about new resources that I can explore.
PCA, for some men and for some people in the general population, has a kind of stigma attached to it. Just as there is still some stigma about mental health treatment. I’ve heard some men say that they have stopped telling people that they have prostate cancer because of the negative comments or reactions they get. Also, some men simply do not want to think about prostate cancer and/or hear about it period.
1 in 9 men in the USA will be diagnosed with PCA this year. That is about 230,000 men. Among those diagnosed with PCA, 1 in 5 men will be veterans. I am a Viet Nam veteran and served 6 years in the US Navy. Veterans are often diagnosed at an earlier age and often with more aggressive or advanced stages of PCA.
This year 30,000 men will die of prostate cancer. Not with prostate cancer but from prostate cancer. There is a huge difference. And about 30 million men suffer from prostate conditions affecting their quality of life.
Of those 230,000 men diagnosed with PCA this year the good news is that about 50% of those diagnosed will not have to have any kind of initial treatment.
Let me repeat that statement. About 50% of those men diagnosed will not have to have any kind of initial treatment.
There are many myths and much misleading information about PCA and it’s treatment.
Generally speaking, many men will outlive their PCA and pass on not even knowing that they had prostate cancer. A simple and inexpensive blood test will provide information about your PSA (prostate-specific antigen test) and testosterone. These are the most common biomarkers along with a DRE (digital rectal exam – feeling for size, ridges, lumps or any abnormalities of your prostate) used to do an initial diagnosis of PCA, most often by a urologist.
There are many other diagnostic processes and tools for finding a more accurate assessment for your particular situation. Recently there are newer imaging techniques and updated equipment that does a multi-parametric MRI with a Tesla 3 magnetic coil. Genetic and genomic tests are available and can be done with a simple cheek swab. These new tools may help with diagnosis and treatment options.
Generally, PCA is a slow-growing disease and unless you have a very aggressive or advanced form of prostate cancer you can usually take several months to study your options. You have time to consult with other professionals and get second opinions or even a third opinion if you need more information.
And you have valuable time to have a heart to heart talk with your partner and family. Be as candid as you can about the possible side effects that are immediate, long term and permanent that may result from a particular treatment option. It is vital to be comfortable with your decisions and your choice of medical provider and the treatment you and your doctor together decide upon.
I feel that PCA treatment needs to be a collaborative endeavor and you would be wise to be a part of the decision making that can impact your treatment. I think that knowing in your own mind that whatever treatment you decide upon is ultimately your decision, and not a decision that is someone else’s wishes or desires no matter or whatever their good intentions is paramount.
True, your decision may impact the quality of life of other people. But it is your life decision. For me, accepting this fact has made living with a very complicated disease and the myriad of decisions I must make about treatments, medications, nutrition, exercise, and so on and so on, much easier. It has had a positive impact on my quality of life and I feel more motivated to do what I feel is right for me. Does this sound selfish to you? I used to think and feel that way. I do not anymore. At least most of the time.
Why then are so many men being treated? PCA like many other cancers and chronic diseases is a multibillion dollar business. Part of the gigantic health care industries, mega pharmaceutical and insurance companies, vitamin and herbal companies, medical corporations, research institutions, hospitals, cancer treatment centers, imaging and radiologic centers, outpatient surgeries, phlebotomy centers and laboratories, medical supply businesses (catheters, incontinence pads , etc.), medical practitioners i.e. doctors of many specialties, nurses, dietitians, mental health practitioners, medical social workers, physical rehabilitation centers, and some health care people who tout natural cures which some may help but many do not. And if they are promising that what they are selling will cure you. All I have to say is “caveat emptor”. Buyer beware!
I am not saying that all these institutions and medical practitioners and businesses are all about the money. Most practitioners are ethical and practice with integrity. And there are some pharmaceuticals which will subsidize PCA patients who cannot afford their medications. There are foundations associated with large comprehensive specialized treatment centers that can also help pay for some of the very expensive medications.
Some treatments can be prohibitively expensive, especially, if one is being treated for advanced PCAs which are not covered by health insurance or Medicare. This often occurs because the medications are “off label” meaning that they are FDA approved for treatments other than PCA or the particular stage and degree of PCA and or imaging scans that are not approved for PCA treatment by the FDA yet and therefore not covered by your insurance or Medicare.
One of the side effects of PCA treatment is now being acknowledged as “financial toxicity”. I know some men with PCA who are paying $5,000.00 per month out of pocket for their medication. Some treatments can cost over $25,000.00 or more out of pocket. Some of the new immunotherapies costs run up to six figures.
PCA is a very complicated disease. There have not been methods or techniques developed that can tell you what specific type pf PCA you have. While there are some treatments that are standardized, some are still considered to be controversial as they do not have long term data of their effectiveness. Essentially each man who is diagnosed with PCA has a unique prostate cancer and can respond differently to those treatments. Thus their responses and side effects to the same medication or treatment can vary from individual to individual. So effective treatments need to be tailored to each man being treated while factoring in possible side effects. And not every PCA patient has the same if any of the possible effects.
If you are diagnosed with prostate cancer it will change your life. And it can affect the lives of your spouse, partner, family members, caregivers, and friends.
So what can you do now?
- Be informed with verifiable facts and data.
- Do some reading and do research from validated sources.
- And do be aware that the internet and social media is full of myths and misconceptions.
However, there are sites with excellent factual information about prostate cancer. I have listed some of them.
As for prevention consider some behavioral changes as they are recommended for good cardiovascular heath and good health in general. Good nutrition and exercise is now considered by many experts to be a vital part of prostate cancer treatment. Some studies are showing evidence for some diseases including PCA that proper nutrition and exercise can extend your life expectancy by 61% taking into consideration the state of your overall health.
Today, I am considered to be in the middle stage of intermediate prostate cancer. There are three stages: low, intermediate, and high risk with some sub stages per category depending on which staging assessment you use, there being several different ones.
I knew from all my reading and researching that I needed to do something about my lack of exercise. I got my partner and I to sign up for a twice a week class. The instructions were to bring water, stretch band and 2lb weights. After the first class, I went and bought a weaker stretch band and 1lb weights, which by the way only come in the color pink. Oh yeah pink.
I was so out of condition that I could not do the exercises and my mobility, flexibility, and balance were atrocious. What an eye opener. Much of this very poor physical condition can be attributed to my PCA treatment and the treatments side effects; loss of muscle mass and body tone, loss of balance, extreme fatigue, lack of motivation and depression etc. And of course my own lack of action to do something about my condition.
After one year of this exercise class, I now use 2lb weights and my mobility and flexibility and balance and ability to stretch have improved remarkably. I would say maybe 85-90% but I just asked my partner and she says maybe 75 to 80%, HuH. Anyway, my physical fatigue, and mental and emotional fatigue have, according to my partner, improved 90%. Huge change in one year.
The instructor also does something that has taught me a lot about attitude and adaptability. She helps those who have various physical conditions who are not able to do some of the exercise by showing them alternatives so that they can still participate without any pain or injury due to their current physical limits.
I am learning that there are other ways of doing things if you know how and if you have the right person who can show you how. She is very motivating and you can hear her saying “you can do this”. “You are strong.” She tells people to listen to their bodies and stop when you are fatigued and need to rest.
My partner and I also rescued a dog last summer and not only has she brought a lot of joy into our lives but she demands, and I say demands, to be walked every day. So I walk 3-5 miles a week now. Or more accurately the dog walks me and if she had her way it would be more but my partner likes walking her too. Thank you, partner.
My focus today, in addition to exercise, is on the importance of good (right) nutrition as an integral aspect of my PCA treatment. I have tried a number of recommended diets, consulted with dietitian’s and cancer dietitians and have not been too successful in working with them. Too many numbers and too complicated for me to follow and keep up.
But my research paid off big time because I found Denise, a medical nutritionist, (yes, this is her blog) a few months ago. And she has made a huge difference in my quality of life. During our first appointment, I felt hope and excitement about food again. She has helped me understand and dispel a lot of myths and misconceptions I have learned to follow in the past few years. I am so grateful and appreciative of her knowledge and the friendly manner and ease she has of explaining things in a way that I can usually understand. . And her meal plans are easy to understand and to follow without a lot of numbers and counting. Thank you Denise!
I also have much to be grateful in my life. I do the best I can while being treated for prostate cancer, to live with the highest quality of life I know how to live. I am grateful for all the medical and professional people who assist me while I am on this journey. And of course for my life partner and the Princess of our home, our dog.
At the age of 76, I’m still trucking down that road of good health and exercise. 61% or more eh!
Prostate Cancer Resources
These sites often have other websites listed for additional research or information.
American Cancer Society
National Comprehensive Cancer Network
National Cancer Institute
Prostate Cancer Research Institute
Prostate Cancer Research Institute
Prostate Forum of Orange County, CA
Patient Advocate Foundation
Partnership for Prescription Assistance
Cancer Financial Assistance Coalition
Caregiver Action Network
“The Key to Prostate Cancer: 30 Experts Explain 15 stages of Prostate Cancer” Mark Scholz, M.D. www prostateoncology.com. $25.00. Published June 2018
Excellent book on prostate cancer for newly diagnosed and for advanced prostate cancer. It is very helpful in finding your stage of cancer and treatment options listed for every stage. I would highly recommend this for everyone who wants to learn more about prostate cancer and treatment including chapters on nutrition and exercise. “For men who wish to fight the fear of prostate cancer with knowledge, this is the book”; William Cassidy
–Tom T Yei ( [email protected] )