My Journey

By xteex

1 min read

Hello, all my name is Thomas. I’m 53 years old… nice to meet you all. Let’s see where do I start...

Well, I was diagnosed with prostate cancer in November 2020. Like most, it was definitely a devastating blow to me. My mind started fast-forwarding to my kid's life, my wife, I started thinking will I be there for them? Did I do all I could for them, you know the usual stuff. My PSA was around 125, so I began researching, and everywhere I looked, I only saw people having PSA scores as high as 20? So I was confused. Was I missing a decimal point or something? lol

My oncologist and urologist told me a number that high means you definitely have cancer and that I needed to start thinking of a treatment plan right away. So I decided to go with surgery in January. My urologist said he would do his best to preserve one side of the bundle of nerves, but to no avail, that didn’t work out, so now not only am I dealing with urinary incontinence but the reality that I will have ED the rest of my life. And at 53, I was very much enjoying sex with the wife!

Anyway, after surgery, my pathology report says that some of the cancer may have spread to the seminal vesicles. Now they want me to do radiation and hormone therapy, but doing research makes my understanding that won’t be a cure either. I’m pretty much decided against doing the radiation treatments.

For now, I have been looking at natural alternatives for beating this disease. All of this is new to me, but I just can’t see how further damaging my body with their current treatments is helping “quality of life vs. quantity of life.” I am very much confused. Sorry for such a long intro but I’m glad to finally connect with other men who are or will be on this same journey.

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Dennis E. Golden Moderator & Contributor
I was very much against radiation in 2018 following my early surgery in 2013. At the same time I watched my numbers slowly climb. The thought of someone microwave my insides was not something I looked forward to. Candidly it scared me to death. Between 2015 and 18 I tried a number of natural things but still my numbers continued to rise. Finally and reluctantly I said yes to radiation combined with Lupron. My PSA numbers dropped rapidly with the hormone shot For me the 8 weeks of radiation was not bad at all. It was the Lupron shot used to weaken the cancer prior to treatment that was an issue with hot flashes and depression and weight gain. It took about 14 months to get back to feeling normal You have to choose what is right for you. And no one but you can make that choice. Thank goodness my current PSA is now 0.01 following my treatments. I just hope it stays that way. There are no guarantees in life. My free advice is ...Keep an eye on your numbers and do what you feel is right for you. Good luck ...this is not an easy decision but just know many of us here have had different experiences, have walked similar paths and have explored many options. Feel free to reach out we are all willing to share. ... Dennis(prostatcancer.net TEAM)
1. xteex Member
 Thank you Dennis I am definitely gonna keep my numbers in check. I understand there more ways to be intimate with your wife, but as for radiation does that interfere with ED even more?
2. Dennis E. Golden Moderator & Contributor
 I am not am not an MD so can not give you a direct answer on the impact of radiation on ED that said every thing I have read says yes. It takes time apparently for radiation to impact the cancer cells ability to duplicate - and over time apparently radiation can cause additional ED issues. Personally I look at it this way - I am alive and enjoy loving my wife and living it to the fullest every day
lester99 Member
My number was 128. Found out I had prostitute infection. Treatment was high does or antibiotics. Brought number down to 28. I did have cancer my treatment was two months radiation. I have been blessed with remission for ten years. Please consider radiation it's an easy process with very little side effects.
1. xteex Member
 I hear ya but my biggest concern is with the radiation isn't there a good chance of killing off good cells as well as the bad cells?
2. Dennis E. Golden Moderator & Contributor
 Good news on your radiation and being in remission. I was really scared when told i need to be "zapped" 5 days a week for 8 weeks. But after the first few times you understand it is a rather simple process. I did not have any real reactions to the radiation with the exception of a few hemorrhoids that were a bit upset by the process. Everything returned to normal in a few weeks once the treatments stopped. ... Dennis(prostatecancer.net TEAM)
dele0527 Member
Thomas, I hear you and feel your pain and concern, as i am a 18year survivor of pc. I had radiation 18 years ago, and it has been stable at less than 1 since then. I also head a prostrate cancer awareness group that till covid met once a month, for the last 20 years, of course no meetings in the past year, but the group is 50 standing members strong at all times. Not counting the women who also come to the meeting with their men folk. In all that time we have only lost 3 members to pc, and we have had all kinds of treatments including what you have written about. Yes, there is no cure, but it can be treated, the psa of 120 is high but I have seen it at levels higher than 400 hundreds up to 15000, yes that number is correct it’s not a typo and my friend lived for ten years before passing working up to the week he passed. There isn’t a cure but with proper treatment one can live a good long full life. Don’t rule out radiation and hormone treatments but be sure you get the best drs. Involved for imrt or proton beam, find a great oncologist, not just a urologist or radiation oncologist. Get several opinions from different drs. Ask about the various new drugs from zytiga to Provenge to xtandi, casodex, And then chose the best course of action for you and your family. One of the most important things I have observed over the last 20 years is those with an upbeat positive attitude fare far better than whose who are down in the dumps. Be well and stay strong
1. xteex Member
 Dele thank you for some great advice especially getting the second opinions. I Will say this disease has gotten me to make some life style changes especially the way I eat and exercise... Trying to get this incontinence under control is hard I just got promoted to a new job and now I know I will have to work doubly harder to get close to normal as I possibly can.. But im determined I'm not giving up I believe God will make a way possible 🙏
2. Dennis E. Golden Moderator & Contributor
 So agree on keeping a good attitude and focusing on the future. We all face the same future as none of us will live forever. The fact you have cancer is just that ... a fact. You can choose to die mentally every day 365 days a year or move on. It is not easy especially in the beginning . Hopefully over time you adjust and hopefully learn to live life to its fullest ever day and learn to love and appreciate those around you ...Dennis(prostate <a href='https://cancer.net' target='_blank' rel='noopener noreferrer ugc'>cancer.net</a> TEAM)
Guy Meredith Moderator & Contributor
xTeex, Loss of erectile function does not need to be an end to intimacy. We find new ways to be intimate and pleasure our partners that can be very fulfilling. If I have not already, I'd like to recommend Dr. Richard Wassersug's book "Androgen Deprivation Therapy: An essential guide for men with prostate cancer and their loved ones". While most information focuses on the disease and mechanics of treatment, Dr. Wassersug focuses on the man, his loved ones and their relationships. He is a prostate cancer patient on long term hormone treatment (ADT) and has experienced our journey.
1. xteex Member
 Thanks Guy I will check that book out for sure!
kenneth1955 Member
Hey Buddy I'm sorry for what you are going through. I for one say that your doctor's rushed you into surgery to fast. November to January. Way to fast Did you have any other test and did you go for a second opinion. Let me tell you a little story. My GP did a lot of test on me. The next day I got a call from her and she told me I had a very high PSA 426. That I have cancer and she had me down to see a surgery. I was 47 I did go and see him had every test in the books even a 12 needle biopsy. It turned out to be a very bad prostate infection. After that I learned everything I needed to know about my body. I'm 65 and doing great. I have decided to not have anything done if I do get prostate cancer. No one will touch me. I'm going to live out my days the way I want. With no side effects. Before your surgery you should have try the natural alternative medicine I read a article about a guy that was told the same thing at your age and he told them no. He changed his diet and meds and lived to 85. It can be done Now you have to do this so you don't have any more surgery or treatment. The treatments are worse then the cancer. With having your prostate removed you are going to have to work on your muscle tone. You will be able to get your penis working again but it can take a few years maybe sooner because you are younger. Tell your doctor to give you some pills to help. Do not give up. You have to get the blood into your penis to keep it healthy. Good luck and I am sorry for what that doctor did to you. Ken
1. Dennis E. Golden Moderator & Contributor
 I so agree on not rushing into surgery or radiation. Prostate cancer is slow growing and it just makes sense to get a second or even 3rd opinion. I have known a number of men who went for natural cures - my advice is proceed with caution especially if you have high Gleason scores and an aggressive cancer. That said we all are free to make personal choices ... Dennis(prostatecancer.net Team)
scottsostuff Member
Hey, Thomas. Thank you for sharing. I was diagnosed with bladder cancer in November 2017 at the age of 54. I had a Cystoprostatectomy in 2018 which included removing my bladder, prostate, seminal vesicles, and a sampling of lymph nodes. The resulting pathology report revealed that I also had prostate cancer. I am currently exploring the possibility of a penile prosthesis/inflatable implant. The research I’ve found so far indicated very high satisfaction levels among couples, going as high as 92%. While it will not restore the ability to ejaculate, it will allow men to get hard and experience “normal” sex complete with orgasm. I’d encourage you to talk with your doctor about that and/or any other possible solutions available to you.