Community Spotlight: Good, Bad, and the Ugly

3 min read

Ronald Dahlen shares his story battling prostate cancer. From diagnosis to making tough treatment decisions to adjusting to a "new normal", Ronald opens up about how life has changed for the good, bad, and ugly since prostate cancer.

In November of 2016, I was diagnosed with prostate cancer. Testing showed it to be a large and aggressive tumor -- Gleason Score 8. In December, I chose to have a radical prostatectomy. The pathology report showed "a focally positive margin" and one positive lymph node. My recovery went well and after a month regained bladder control. Over the course of 2017, my PSA rose from 0.07 to 0.16. It was then recommended that I have radiation treatments, to the prostate bed and surrounding lymph nodes, in conjunction with androgen deprivation therapy (ADT).

Adjusting to my "new normal"

July 2019 It has now been one year since my radiation treatments and six months since ADT (pharmaceutical castration) ended after cancers returned. It has also been two and a half years since my radical prostatectomy. I am now dealing with what drug commercials euphemistically call my "new normal".What is really meant by "new normal" is that you may live longer, but your life may suck. On the positive side, my latest test shows my PSA to be negligible (a good thing), my testosterone has returned to normal, and my thyroid function has also returned to normal. My relentless hot flashes have finally stopped. I’ve generally been feeling well and my energy is good for my age (73). I also think I am more empathetic to other peoples’ illnesses, especially cancer. On the downside, my motivation is low and I tend to avoid making future plans; perhaps mild depression. I also experience occasional phantom erections. Some of the more disturbing side effects are impotence and near total destruction of sexual function. My penis has shrunk by nearly two inches on the upside, which is moot since it will never be erect again; however, none the less, it is just one more blow to my psyche. With few exceptions, my body hair still has not grown back. At times I also experience some difficulty controlling bowel movements and also mild urinary incontinence. I still experience some cognitive impairment and cancer returning is always a real concern. Hopefully, with time I will learn to accept my new normal.Learning to live with the side effectsOctober 2019It has been three years since my cancer was first detected.Cognitive impairment is still an annoying consequence and this fall I began taking mirtazapine again for depression. I had stopped taking it late spring thinking my mood would improve with the weather, but I found myself gradually slipping. Depression is something I never really experienced before so it was not easy for me to recognize. I had one Viagra left from five I received after my surgery -- the other four had no effect. Rather than throw it away I decided to give it a try. Much to my surprise it actually had an effect. Not anything like before surgery, but then again anything is an improvement. Without the depression, my quality of life has improved and I am more optimistic about the future.My latest PSA test resultsNovember 2019November, I met with my oncologist. I had my blood drawn the week before for a PSA test. I like my oncologist, he explains things well and pulls no punches. He gave me a thorough examination and then told me that my PSA had risen to 0.04 from 0.00. Hopefully, this reading was just an anomaly. If my PSA continues to rise it is an indication that prostate cancer has returned. My options then are limited, depending on where it is located.There are medications and procedures that may extend my life for a few years. But at what cost financially and to my quality of life.

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eduardo1 Member
Thank you for sharing this story. It connected with me.
Dennis E. Golden Moderator & Contributor
The good thing about being alive today with prostate cancer is that a lot is going on in terms of new treatment protocols and drugs. If you just take a look at the following list of drugs and the dates they were approved for use and its easy to see what is happening. I also understand that more are on the way: Abiraterone acetate (Zytiga)- April, 2011 Apalutamide (Erleada)- Feb, 2018 Cabazitaxel (Jevtana)- June, 2010 Darolutamide (Nubeqa)- July, 2019 Docetaxel (Taxotere)- May, 2004 Enzalutamide (Xtandi)- August, 2012 Sipuleucel-T (Provenge)- April, 2010 Radium 223 (Xofigo)- May 2013 The big issues are always cost and quality of life. I and many others have been quite vocal in speaking with researchers and drug companies when it comes to the impact of drugs on the body and on quality of life. I was really shocked a few years ago when hosting a feedback session for a major drug company that included patients, caregivers and medical professionals. It was almost as both MD's and the drug manufacturer were somewhat surprised at patient reactions. Now we are not talking about drug trials but rather drugs currently in use. After I while it appeared that the "issue" was the men themselves. Many of whom refused to speak up about the negative consequences - for fear of appearing weak. In sharp contrast it was the caregivers who were outspoken especially when they were interviewed in private. When we brought the groups back together the "wall of silence" came down as the partners engaged in open and honest conversations. As men ...we would all do ourselves and others a lot of good if we where honest and spoke up when it asked about treatment protocols. Dennis(ProstateCancer.net TEAM)
kennethaki Member
Yes. I thought it is about time more men talked about their situation. I found it quite strange that the first three years of researching I could get nothing from men sites on anything alternative. All the women sites they were into everything. And talked about it. We need more to talk about their results and the after results for one to ten years. There are a few that have been operated on and are still alive after 10 years. Others have problems. We are all different and create our own worlds. Some are positive thinking some are not so positive thinking. There is a report out that positive things actually increase longevity. Anyway. Well done with your story. What does the surgeon say about recurring PSA after prostate taken out. I see so many delighted comments from people afyer a prostatectomy believing they are now clear of cancer. They celebrate with a few pints down the pub. Cancer needs a radical lifestyle change including diet and excercise. I do hope any comments I have made do not upset anyone. The more said is the more to help. I am 75 now. 4 yrs watch and wait. Bit like Russian roulette. Symptoms at Night are wearing a bag at night to catch urine. So somethng going on. haha.
1. kenneth1955 Member
 Hey Ken We need more research on prostate cancer for men. Just to deal Women have it much better they can live a normal life after cancer but if we get prostate cancer the doctor tell you all will be fine and to get another hobby. That's not right......
2. Dennis E. Golden Moderator & Contributor
 Ken I so agree. I am amazed by some of the stories men tell me about the reactions their personal MD's have when it comes to prostate cancer. Recently ran into a guy whose GP told him that it was unnecessary for men to get a PSA test. Was told that the test was not accurate and that the test was probably was not covered ... so why bother. He did eventually did get a test after we spoke AND he also discovered that it was covered by his insurance. Unfortunately he also learned his PSA was 14 - So now we will see where it goes from here for him.He has also has changed GPs and now is seeing a urologist. Dealing with the reality of prostate cancer certainly needs work by both patients and MD's ... Dennis(ProstateCancer.net Team)
Richard Faust Community Admin
Hi Ronald. Thanks for your willingness to share your story. Wanted to share with you a couple of replies to your article from our Facebook page (note: One of them is from me): "Ronald, you’re walking down a similar path I took—prostatectomy in 2013 and radiation plus Lupron in 2015, with depression from the Lupron ever since. (I’ve been seeing a psychiatrist for the depression since 2016, and it looks like I’m on two drugs for it for the rest of my life. But for true depression, we do need clinical help. There is virtually no way to combat depression successfully without the right drugs.) But I’m really sorry to hear you have another positive PSA, but with that low a PSA, it sure would be worth the battle if it happened to me. We’ve discussed them before on <a href='https://prostatecancer.net' target='_blank'>ProstateCancer.net</a>, but there are two scans available for detecting where the PCa is in your body. If my PCa comes back, I’m going to opt for the PSMA (Prostate Specific Membranes Antigen, which is only produced by PCa cells) scan, and it is widely used throughout Europe. While I literally would have gone to Holland to have the PSMA done if mine had come back, it is now being done at UCLA in California and Sloan Kettering Memorial in New York City, so I’ll go to Sloan Kettering as it’s fairly close. (I believe another health care center in Texas also does it.). But what I really like about the PSMA scan is it shows the radiation oncologist exactly where the radiation is needed. But being the youngster you are (I’ve got you by 2 years 🙃), I can say that I’m very much enjoying life, despite the little glitches that have been thrown my way. All the best to you. Len Smith <a href='https://prostatecancer.net' target='_blank'>ProstateCancer.net</a> Team Moderator PS - In 2015, when I was told my PSA was 0.1 (the so called standard PSA test back then), my oncologist said they wait until it’s at least 0.2 before doing anything. To which I said that there’s no waiting for a Gleason 9 PCa to double in my body. There was no argument, and I’m happy to say that was my last positive PSA." "Hi Ronald. The other test for locating recurrent cancer that Len mentioned is Axumin which is an injection of a radioactive tracer that links to amino acids that are absorbed by prostate cancer. On a Pet scan this tracer lights up revealing the location of the cancer. This article goes into further detail: <a href='https://prostatecancer.net/clinical/axumin-early-detection' target='_blank'>https://prostatecancer.net/clinical/axumin-early-detection/</a>. As Len noted, the Prostate Specific Membranes Antigen test is considered to be even more accurate because it focuses on something only produced by PCa, as opposed to the amino acid that is absorbed by PCA, but is created separate from it within the body. Both tests are great steps forward in being able to target and treat recurrent cancer at an early stage. Best, Richard (ProstateCancer.net Team)"
kenneth1955 Member
First of all I was not going to say anything but I just have to. What I'm going to say is my opinion. We are all different and we all have to do what we feel is right for us I'm sorry for anyone that gets prostate cancer or any cancer but no doctor or disease is going to tell me what to do with my life. If I get prostate cancer I will never do anything no procedures or surgery's. If this is the way I'm going to go out. I'm going to go out with a bang. I will live by life the way I want to to the end without any side effects. That is the way we all should. Think before you do anything.
prostate Member
Thank you for the postings and comments all very informative. I was diagnosed in 0714. I am so happy to have those additional five yeas but the side affects and constant worry wear on you.
1. Dennis E. Golden Moderator & Contributor
 <inline-mention user-id="3267556" username="prostate"/> - This thing called prostate cancer can really camp out in your head. It took me several years to come to grips with ...A) All of my constant worrying will not cure me and in fact it may do the opposite ...B) I have choices. I can live every day in fear or chose not to do so ... C) I can dread every PSA test OR I can thank God and all of the research scientists that there are more treatments available today than ever before and ...D) I believe in my heart there are many more years of life ahead for all of us. Dennis(ProstateCancer.net Team)
clark Member
Hi Ronald. I empathize with your situation. I have some similarities where I had an RP in 2012, then a recurrence at almost exactly 5 years in 2017 (I am now 71). We did a 33 day radiation cycle and also 6 months of Lupron. Just yesterday I was at the oncologist's office getting my PSA checked and reading your article when I discovered that my PSA had gone from 0.01 to 0.05. I was originally going on a 6 month checkup schedule, but now am back to quarterly checkups. I guess it's back to reading up on what to do with a second recurrence! I wish you well!
1. Dennis E. Golden Moderator & Contributor
 Hi Clark also on a similar path as you. Was diagnosed in 2013 and did the robotic surgery - and was clear for 2 years. Then i began to see a slow rise in PSA. At a PSA of 0.13 in 2018 I did the 6 month Lupron in advance of 40 radiation treatments. Fingers crossed here. So far my PSA is currently undetectable that said I did have a high Gleason so who know. Keep us all posted as to what the next steps are for you. All here are wishing you the best ... Dennis (ProstateCancer.net Team)
kenneth1955 Member
Dennis Thank you for getting back to me. We as men should be aware of what is going on with our body's and not be forced into doing anything we do not want to do It's how you want to live the rest of your life. Do you want to live a full life or a shell of your life. Yes they say that after a certain age we should not do a PSA. I also read that the PSA was not made to to detect cancer but too watch it. Man have to take charge of there life and think first before they do anything
mick0 Member
Thank you for sharing - I am about a year behind you in progress but had the same basic progression Gleason then prostatectomy with still detectable and rising psa post op. I am being pushed for the HDT and radiation so your experience is invaluable for me in making a decision. On the erectile side if I may suggest an implant - while a painful initial surgery the pump has at least given me the ability to have intercourse. I dont know your surgeon told you but everyone having the prostatectomy "loses" penile length. It is really the same but the loss of the gland and tissue causes the penis to drop into the abdominal cavity. Best wishes I hope your overall mental and physical health improves . This disease really makes one ask hard questions about quality of life .