Living with Prostate Cancer: Meet others & introduce yourself

I was hoping someone else would address this issue. My husband has PC and is taking Xtandi (pills) & the Eligard shot 2 X’s a year. We have only been dealing with this since March. He also had it spread to a part of his pelvis bone and lymph node. We have no support group as we are only dealing with a urologist. My husband has low testosterone (175) and his PSA is .9 because of the medication he is using. The doctor recommended using a penile pump which is successful some of the time.
My husband says it all starts with mindset but it’s very frustrating.

Thank you for sharing with my your thoughts. As you mentioned, all choices are individual, and even if I am not sure about my future, I decided to stay with my decision, and wish for the better outcome.

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.

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.

Guys, I have PC with mets to bone in 5 places. Feeling good after chemo. And, my testosterone is so low none of my equipment works. My husband is understanding and says the main reason he loves me has nothing to do with sex, but he has a very strong sex drive where mine is non-existent now. Does anyone else have a similar experience? The oncologist I go to has no support group, social worker or counselor they can recommend. I need to talk with others and hear how they cope with this situation. I know this has nothing to do with cancer treatment per se, but having to face this huge change in my intimate life with my spouse causes me tons of stress.

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.

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?

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