Living with Prostate Cancer: Meet others & introduce yourself

I am very sorry to hear your story. It is unfortunately very common. My name is Jeff.

In August I talked with a good business friend in Sweden. We stayed in touch monthly. He is 70 and very active. He told me that he had just been diagnosed with Stage IV prostate Cancer. Metastasized to bones and lymph nodes.

I had not had my PSA checked for about 6 years, age is 64 at the time. Had it checked through WEBMD, who used Labcorp for testing. Test showed PSA of 12. I freaked out. Had another test and it was 10.5. Saw a Urologist who performed another PSA, still 10.5. Two days later had 13 core biopsy. Cowered all weekend waiting for results. Gleason 6 Cancer diagnosis. My panic mode went into full gear. Fortunately my Urologist gave me a reading list which included Dr. Walsh's "Surviving Prostate Cancer". My wife bought it immediately and we both started reading. With each chapter my blood pressure dropped and I began to start to understand that Prostate Cancer in low risk stages is not like many other cancers which progress rapidly.

Because of elevated PSA I chose to have it treated with Proton Beam Radiation Therapy at Mayo Rochester. Completed 5 dose regimen on January 19, 2023. Other than some inflammation causing slow urination there have been no side effects to date.

All men react differently. Some immediately want a RP, just cut it out. Others want Active Surveillance, some want Radiation in one form or another. My personal lay opinion is that all men diagnosed at whatever stage should do their homework. Dig in, look for multiple opinions from the experts on which direction to pursue. Do not get bullied by someone insisting their approach is the only sane approach and taking an alternative approach is like committing suicide.

Stage IV is not Gleason 6 and requires a much different approach, even so, prognosis is still better than other aggressive cancers. My friend in Sweden is taking hormones but has decided to forego chemo at least for the time being. He has a very goood probability of living a full life for at least another 5 years.

Stay strong and although difficult, try to understand just how fragile men are when confronting this type of challenge.

Best wishes to you both.

Kayefo,
I’m sorry for your distress.
I’m not a doctor but I’m going to read between the lines. I highly suspect that in addition to radiation that your friend has taken a course of ADT (androgen deprivation therapy). ADT decreases a mans testosterone to near zero. If you read elsewhere on Mayo Connect you will find that many men on ADT experience: loss of libido (interest in sexual activity), decline or complete loss of erectile function, mental confusion, muscle loss, weight gain, etc.
I had a four month course of ADT after Proton Beam Therapy. I had a decline in erectile function, probably some mental confusion, emotional lows, decline in libido, ~maybe I’ll blame my weight gain on ADT too.

There are things written that men have thoughts about sex 19 times a day. Imagine how strange it would be to have that side of life disappear that has been there since being a teen. I’m 72 and I would say this has waned some, but for your friend in his 50’s this has been very much a part of his daily life.

It may also be worth stating the generalization that men often experience sexual activity with a partner as a way to feel closer and more intimate emotionally. So what ‘replaces’ that when lack of interest and ED are present.

After the end of ADT it appears that many men take a long time to recover. That might be depressing.

I think also that being in your 50’s and being confronted with a life threatening illness would be pretty challenging. Many men here are 60 or 70 or more, and probably are aware that life doesn’t go on for ever.

If your friend is open to more conversation you might also ask him for more details of his treatment and his diagnosis. Meantime, if you are willing, learn all you can about prostate cancer, diagnosis, treatments, life after prostate cancer treatment.. Mayo Connect is one source and the video’s on YouTube by the Prostate Cancer Research Institute is another pcri.org (of many).

I think also that you might see if he is open to exploring the behavior of “pulling away” when ill. Maybe in the past, or even in childhood, he was left to fend for himself. …sort of like adult children of alcoholics who carry their childhood experience of nobody being reliable into adulthood and still operating like nobody else if reliable or capable.

Hope that helps,

I’ve been on ADT for about 3 years, recently got married and … surprise … I can’t love my wife the way I would like to. My wife and I would like to discuss with another couple (or more) in the same situation as us ways to better enjoy romantic times in bed.

More details will be provided over time and as we get to know the other couple(s).

I am sorry as well that Steven, who provided his time to the armed forces, should be let down by them that way. I agree with the comments from others here. Clearly, one doctors opinion is not enough. You might want to follow the imaging and nuclear medicine technology to hone in on the latest ways to make sure the doctors are locating the cancer in your system. Its changing pretty quickly. If you can see it, you can treat it.

I had nerve pain in the pelvic area and was having incontinence problems prior to having prostate cancer identified. The one pain in the area just right of the prostate was getting very bad but I had sensitivity in other other areas. I had the prostatectomy in lieu of radiation because I felt it would get rid of this pain. The prostatectomy was done in September 2022and the pain went away here but I got anal pain and fecal issues and could not sit because of the pain. I also got pain in the area of the bladder sphincter. These areas were extremely sensitive to pressure. When I coughed I got electrical shocks down my leg and up to my chest emanating from the bladder sphincter and when had to defecate the pain was unbearable. I went to PT and am now with no real pain in the pelvic area. I am feeling better than I have for years. The nerve is still active in the area which I think is causing me the bladder releases and the skin tingles, along with other sensitivities. I am so happy my pain is gone and my 5 month psa for cancer was good. My incontinence is bad right now but it was not great before surgery and I have learned to live with it wearing protection. Hopefully your nerve pain will go away. Wishing you the best Timmy

I have had an MRI that showed a lesion. Then did a trans perineal 30 core MRI fusion guided biopsy. I have a 100 gram prostate and 5 cores all taken from the area of the lesion that showed two cores that were 3-4 and 3 that were 4-3 Gleason. My PSA is 2.9 and the cancer is confined to the prostate and that was verified by a PSMA Pet scan. The oncologist wants 6 months of Lupron at age 73.5 and 28 proton sessions. I am in the process of getting a 2nd opinion on the biopsy samples as some of what I have read about pathology upgrading is very concerning to me. I am also waiting for my Myriad Genetics test results to come back. My question is has anyone had the CyberKnife procedure? It seems like a no brainer because of its accuracy and only 5 treatments.

I feel our doctor was not assertive enough. PSA of 14, biospy negative. 2 years later, still 14. MRI 8 weeks later, PIRAD 5, another biopsy 4 weeks later grade t3b. Pets scan Seminal vesticle involved.
Why these gaps in testing....and this is a Mayo clinic. Would sooner testing reduce the spread? Everything says slow growing, but what is slow....weeks, months? We feel like our primary urologist was ineffective in his treatment.

My recommentation is to look into an AMS 700 penile implant The unit will provide you with the most realistic erection. It is easy to use and very satifying.

Sounds to me like you are on the correct path. Kudos to your Doctor. The one thing I have learned is minimizing the amount of Lupron you take. The more take the lower the chances that your testosteron will recover. My gleason score is 9 and I had 13/15 cores with high grade cancer. Good luck my friend

CyberKnife to my understanding refers to Proton Beam SBRT, (Stereo Tactic Body Radiation Therapy). I believe they refer to the knife because of the precise nature of focusing the radiation to minimize potential of impacting healthy non-cancerous tissue.

I received 5 doses at Mayo Clinic, Rochester in January 2023. The process was very easy other than the stress of knowing that you are being treated for "Cancer". The radiation itself is painless, non-intrusive and takes a very short period of time for each treatment. The longest part of treatment can be waiting for "The Beam" which is shared by 4 or 5 treatment room.

Prior to Radiation, there are two prep sessions in which 4 carbon markers are inserted into the Prostate. These are used during treatment to precisely target to the Prostate and avoid other organs. At the same time SpaceOAR Hydrogel is injected between the Prostate and Rectum to further reduce any risk of damaging the rectum during radiation. Additional steps are taken to optimize the position and fullness of the bladder during radiation. You will have a second prep session in which marks are placed on your abdomen for positioning/targeting purposes. A short MRI was taking as well as CT Scan.

The only potential for pain is during the two prep sessions. Everyone experiences pain differently and I had little to no pain for the marker placement or the hydrogel injection. Only pain support given/requested was injected Lidocaine. Some prefer additional pain support including full anesthesia. If you handled Biopsy with minimum of distress, you would likely feel even less for prep sessions.

Reading Dr. Walsh's "Surviving Prostate Cancer" was extremely helpful. My wife liked the book, "Invasion of the Prostate Gland Snatchers".

Might want to get a second opinion on the Lupron.
Best wishes for a successful treatment!