Living with Prostate Cancer: Meet others & introduce yourself
Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.
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Let's start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Hi, my name is Ed. I diagnosed with Intermediate, Gleason 7 Prostate cancer, just a few month ago.
Despite my doctor's suggestion to get radiation treatment, I decided just to watch my cancer's development for now. It is still localized in the prostate, and I honestly don't know for how long it will stay there. I red a lot about horrible side effects if I decide to treat my cancer, and therefore i decided not to do anything about treatment. Maybe just pain therapy, if I won't be able to bare the pain. Any suggestions?
Hip, I am a new participant in this group, and a relatively new prostate cancer patient. I was initially diagnosed with benign hyperplasia, it was not until 8 months later and a change in medical providers that the cancer was diagnosed. Gleason score and 9 and metastasis. I have started on Lupron and Yonsa in January and chemo in February. Round three of chemo is this Thursday. I am now having difficulty getting a refill of the Yonsa. I find that the pharmacies are out of Yonsa stock. Have tried Express Scripts, initially mandated by Tricare, and now Walgreens to be out with no estimate of availability date. Does anyone know the situation with Yonsa supply and a possible source? I will appreciate any and all feedback and guidance.
Ed, I am in the same boat as you, diagnosed two years ago, Gleason 7, confined to prostate per MRI. (former) urologist recommended prostate removal or radiation. I began researching minimally invasive treatments and really liked HIFU. I also have an enlarged prostate so that makes HIFU a little problematic so now I am looking into laser therapy, specifically the new ECHO LASER 4. Nothing set up as of yet. BTW, here is an interesting study that concludes that an enlarged prostate can be protective against cancer growing and/or spreading: https://www.pnas.org/doi/full/10.1073/pnas.1815735116
Thank you for you response. I will take my chances, and will just watch.
I went through the usual procedures: PSA test, DRE, biopsy, diagnosed with PC, Gleason 3+4. Prior to surgery, doctor ordered an MRI. He said since the MRI showed the tumor contained within the prostate he would attempt to save both nerve bundles. He was successful! 😁 However, post-operative biopsy showed microscopic, focal EPE, meaning the cancer got outside the outer layer of the gland but the MRI couldn't see it. With the EPE, along with positive margin, Uro said 70% chance of recurrence. Oncologist said he believes my cancer will come back "someday." Not wanting to worry anyone, just let you know the cancer can get outside the prostate undetected by MRI. (Two years post-op, my PSA remains undetectable.)
My name is Bob. I was diagnosed with PC in May 2019, 2 lesions, Gleason 6. Started active surveillance with Johns Hopkins in Baltimore. Recently I had another biopsy in March 2023, a couple more Gleason 6 lesions but one Gleason 7, 3+4. My urologist recommended radiation with Proton Therapy. After a Decipher exam of the biopsy cores, I was told my genome test revealed high risk of metastasis, even though only Gleason 7. I was then put on hormone therapy with Orgovyx, which I started last Saturday, March 29 for 4 months. I also started my Proton therapy yesterday which will be 28 sessions.
My PSA was never over 8, usually between 5-8, which I had checked every 6 months while on active surveillance.
So I’m new to the PC game, haven’t experienced any side effects….yet.
I’ll keep this forum advised as to my progress.
Ed: Choices are individual, and I wish you well with yours.
I favor treatment. My MRI suggested cancer contained within prostate capsule. But it is not a "hard" capsule, and after prostatectomy Aug 2022 at age 72, which I hoped might be curative, cancer cells were found outside (EPE) and .19 PSA.
Today I should finish 37 radiation therapy txs. Also midway through 4 mos ADT Orgovyx.
It seems that everyone's cancer progresses, and if that is true, treating sooner rather than later makes sense to me.
My recovery from surgery went very well. Others have successfully completed ADT (hormone deprivation therapy) together with radiation.
Side effects have been significant for some men, and not for others.
Best guidance and treatment are from experienced surgeon's and oncologists, and may include seeking a center of excellence for diagnosis and/or treatment.
And you make the choices that you are most comfortable with making, including active surveillance.
Many suggest Dr Walsh's book Surviving Prostate Cancer and PCF.org free patient guide.
Best wishes for success.
Bob: 2 1/2 mos (4 mos rx'd) on Orgovyx with modest side effects. Had some "wozziness" or felt a bit "off", particularly the 1st couple of weeks. Be wary of falling early on, if you have this side effect. I did not fall, but others have. And tolerance to any ADT seems to be individual.
Good luck.
Eye, skin melanoma here. The mystery of cancer, and the courage you show are an awesome example of man battling along multiple fronts. Perhaps your physicians don’t like reality.
Being a billionaire helps, as they work assiduously to lesson Medicare, privatize everything. Force doctors to cut off care to lesser beings.
Sorry, I’m bitter.
Ed; You haven't given us your age and that is an important consideration when deciding what to do. I am not aware of there being any pain until your cancer has spread beyond your prostate and has metastasized. I asked my urologist the same question and he said you will be fine for the first 3 or 4 years but once it spreads and gets into your bones and other organs your pain will be unbearable.
I had surgery in 2018 at age 76 when my Gleason score was 3+4. I wanted my urologist to leave no margins so I suffered from ED and I also suffer with incontinence but I can live with that. Post surgery I was able to lead an active life; golf, ski, squash. Although my PSA was undetectable after surgery; it slowly began to rise and reached .370 in January 2022. I opted for salvage radiation in June 2022, which included two injections of Zoladex. I had no significant side effects from the ADT other than feeling extremely tired, but that has improved over time. Post radiation my first two PSA tests have been undetectable but it will be another 6 months before the effect of the ADT wears off. In the meantime, life carries on. I enjoyed 34 days of skiing, I am back playing squash (although not particularly well) and I am looking forward to golfing.
The choice is yours but make sure that you do your research. Consider joining a Support Group. They can be invaluable.