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.

Follow the group. Browse the topics or start a new one.

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?

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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.

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@mayoclinicadvice23

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?

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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

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@josgen

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

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Thank you for you response. I will take my chances, and will just watch.

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@josgen

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

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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.)

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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.

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@mayoclinicadvice23

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?

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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.

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@bobulmer46

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.

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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.

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@tommyq

I am Tommy from mass currently living with stage 4 prostate cancer being treated at Dana Farber My journey has been crazy dealing with this In 2015 I had my yearly Physical exam, my regular PCP had another Dr covering for him During the exam I asked if he was going to do a physical exam to check my prostate because my regular PCP always die He answered that he wasn’t because my PSA were really good and also his fingers were to short Next year. 2016 my regular PCP who always did a physical exam did feel something in my prostate that concerned him He told Me my PSA were great but he felt I should definitely have a biopsy done ASAP The oncologist/surgeon did the biopsy I was discharged went home and had started to have blood flow out ofmy rectum I went immediately back was admitted and I had Tampex inserted in my rectum and removed as needed till the bleeding had stopped At that time the O/S informed me that my biopsy came back with a Gleason score of 3+4 and his belief was that the cancer was just in the prostate because of the very low PSA score I consulted with the surgeon and a radiologist and decided to have the prostate removed based on the information I received about the recovery process I was a self employed contractor who at the time wore all the hats and it would have. financially ruined me if I could not get back to work right away in a high functioning condition After the surgery which was done microscopically The Dr said he did not see any cancer and that he got it all when he removed the prostate My PSA we’re great till they started to rise in 2020 I elected to end my care at Lahey and get treatment at Dana Farber I was started on Hormone therapy then did 6 weeks of radiation This lowered my PSA for a while after during this time I was also dealing with Parkinson’s disease that was not being treated because I was ghosted by my original PCP at Lahey and a Nurse Practitioner at Brigham and Women s who said it was a medication I was taking My prescribing Dr for that medication said that I was on the very minimum dosage and at that dosage could not cause the tremors in my left arm and side with the problems I was having with my balance I stopped taking the medication at the NP advise and when 6 months + had passed and was finished my other treatment I was prescribed Cordoba Levodopa I was told that if it stopped the tremors and worked on my balance I definitely had PD which it did When I was going through the radiation and hormone therapy and untreated PD it was torture every day Then less than a year my PSa started going up I was told by my oncologist at Dana I should start Hormone Therapy right Away then do chemotherapy I asked how long would I live if I elected to not do the treatment he said a tear maybe two and if I did the treatment 4-5 I decided I would rather live maybe 2?good years then go through what I thought would be hell for 4 or 5 I immediately started to work on getting my affairs in order But soon realized I would not ever have enough time I elected to do do the Chemotherapy which I just finished and the hormone therapy that I will be doing from now on with a new team at Dana Farber because my PD was being treated this time along with the Chemotherapy And Hormone Therapy I had by far less of a hard time going through it Currently My psa are good and I am being treated for my PD by a neurologist at the movement disorder clinic at Mass General I have had a real hard time with most of medical drs over the last 6 + years getting tests I wanted and needed based on advice I gotten from people I know that have gone through this Case in point I had a problem with my left eye that I thought was a floater but after a few examinations at Ma eye and ear and doing my own research suspected it was a tumor behind my pupil The specialist I finally saw concurred with me that it probably was She asked me if I had a pet scan done and if I had and any cancer was showing in it It would confirm that it was a tumor and I would be scheduled right away for proton radiation therapy During this time my first oncologist who gave me pushback on having a pet scan done when I had asked for one way before and during this because he wanted to watch my psa which had gone from around .45 to 3.00 in a matter of months I ended up demanding he order a pet scan immediately so I could schedule the proton radiation on my eye I convinced my ophthalmologist melanoma specialist to schedule the radiation consultation and appointment ASAP This was a Thursday told her we could always cancel it if I did not get the pet scan or and or confirmation of cancer in other parts of my body We made the appointment for the following Wednesday for the consult and Thursday and Friday for treatments I got pet scan Tuesday morning cancer was detected in 3 places and I kept my appointment for the consultation and the radiation That long time period from initial examination to treatment left me with a more damaged left eye that got progressively worse I believe because of a drs resistance to ordering a pet scan because to get insurance to approve payment for it involved the doctor doing paperwork he was trying to avoid I understand the medical system is in crisis because of the pandemic and it’s aftermath with medical personnel leaving because of burnout and being under staffed But tell me how hospitals that cannot properly take care of the patients they have now are the same ones spending millions on TV Radio Print ETC marketing to and for new patients

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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.

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@mayoclinicadvice23

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?

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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.

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