Living with Prostate Cancer: Meet others & introduce yourself

I may have posted some of this several months ago. Well, they say there is nothing like a clean start... (Who said it? Damned if I know!)

OK, about 10 years ago I was a patient of a medical doctor at a community clinic. We were on good terms, so when I saw a full page ad for Androgel I brought it in to him and got a prescription. Within 2 weeks my libido came roaring back. After a year or two I lost access to Medicaid and now was on Medicare. I could not get a prescription. So I shrugged and lived with it.
Two years ago I mentioned to my new primary care doctor that I couldn't lose weight, didn't feel like exercising, and basically felt like staying in bed all day. She sent me for a blood test and one of the results was that my testosterone reading was very low. She directed me to a Urologist. He sent me for a blood test and my "low T" was indeed.

So I began getting male hormone replacement shots (in my butt, if you need to know). But after a few months it was evident that nothing much was happening. So off to another blood test. When the results came back he said that my PSA levels, which had been close to "1" were now 11.
So he stopped the HRT shots and gave me another appointment for a month later. He also wanted me to have another blood test a few days before the new appointment.

So I had the test and kept the appointment. That's when I was told that I probably had prostate cancer but he needed to do a biopsy to be sure. A week later the biopsy confirmed that I had prostate cancer. - Somewhere along this journey I underwent ultrasound tests and finally an MRI. When the MRI results were in he started talking about advanced robotic prostate cancer surgery.

Well, I'm not a doctor but I'm not a complete idiot either. I usually listen to WCBS (out of Manhattan) for an hour or two in the morning. I have heard endless ads for robotic assisted prostate surgery as well as ads for radio-active seeds. I don't like the sound of radiation, and it seemed that if I opted for the radioactive seeds I'd be making many return trips to the hospital.

Well, I hate hospitals, and I am not keen on any medical staff in general. I thought that I could have the surgery and that would be the end of it. Wrong! The surgery was done in the morning of June 16th, and I woke up the next day. I'm not sure if they gave me fentanyl prior to the operation but it had to be close to that. I remember none of it. I was given a song and dance about not being afraid of seeing blood in my urine, that I would probably be incontinent for a few weeks, and call us if there were any problems.

So I am pretty much alienated and isolated (by choice) from other people. Both of my knees are shot. No cartilage at all in either one. I was told 5 years ago to lose 50 pounds and then schedule knee replacement therapy for both knees. I lost the weight but I never went back to the osteoarthritis office. I decided that I would rather live with the chronic pain than have the surgery.

I think it was in July that I first came across this forum. Naturally I gravitated towards the posts regarding my male biology and whether or not I would ever be able to have sex again.

So, post operation, I had a catheter in my penis. I really can't recall whether it was a week or two. I went back to the hospital, had the catheter removed, and went back home to my 5 cats and my bi-polar girlfriend. Then I noticed something unexpected. I'd be sitting at my desk, in front of my PC, and feel a warm liquid on my feet. In the beginning it was very much blood, but after 3 or 4 weeks I regained some control over my bladder. I was also happy to see that the yellow urine was greater than the blood. There wasn't any pain throughout this process.

So its been about 6 months. I have some questions but I don't believe that I would get honest answers. I have to wonder if the supplemental hormone therapy prompted the cancer. I wonder why the Urologist was so gung-ho about surgery and downplayed the few questions I had about the radiation process.

And if you're a guy reading this, let me assure you that your penis WILL shrink in size by a half inch to an inch. They removed my entire prostate, and apparently there are 2 steps to being able to get an erection and reach an orgasm. The prostate gland is 50% of the sexual process. Lately I've been feeling a "tingle" down there, but nothing else.

I also don't know how I will ever find out if a few cancer cells escaped and I will eventually have cancer in another part of my body. But just in case, I have been looking for "no kill" animal shelters. I'll be 70 in a couple of months and I think I've had a good ride on this roller-coaster they call life. My girlfriend only tolerates the cats because I have told her many times that I am more concerned for their wellbeing than I am of hers. All 5 cats are "rescue cats", abandoned by their owners when their owners moved out of the condo complex and left their pets behind. I'm all they have.

There is something that concerns me a bit. I'm becoming more understanding of men who kill their families and then themselves. I don't plan on saying "Sayonara" anytime soon, but I can't rule it out either. If my knees continue with the joint pain, and the cancer comes back in some form... Speculation is pretty useless at this point. I guess I'll do the best I can over the next few years and come to a decision then.

Besides, it'll sound kind of weirdly satisfying to say that I am 3/4 of a century old.

I have a family history of prostate cancer (grandfather, father, brother) so I have been very diligent in getting my PSA checked annually. Last check, PSA had more than doubled from 1.4 to 3.6 in a year. Still in normal range for a 71 year old. Because of my family history my urologist recommended an MRI on 12/29 which showed PI-RADS Category 5 with several lesions in the bones of my pelvis. Next, a CAT Scan which showed no evidence of cancer (?), next a bone scan that confirmed the MRI results, next a biopsy that resulted in a Gleason score of 8 and Stage 4 cancer, finally a PET scan that confirmed cancer in prostate, 3 locations on my pelvic bones and sacrum, one lymph node, and nowhere else. Started on Casodex immediately after MRI, scheduled to start Lupron next week, started Zytiga 3 days ago. Radiology oncologist has scheduled 5 weeks of radiation to my prostate starting in April followed by local radiation of the lesions and lymph node after the ADT has taken effect. The PET scan indicated clear targets for radiation and both my oncologist and radiology oncologist are optimistic. Should I be?

Last 5 Rad should be rapid arch to get the margins Then get on Zolodex to stop testosterones

Hello all, My name is Dave. New to this place and actually new to all of this. I recived my diag 3 days ago on 2/1/23. Prostate cancer 3+4 Gleason, grade 2. PSA been rising everytime we check, over the past 18 months gone from 9 to over 11, i thought that was bad but from what im reading people are talking about their PSA doubling, so im not sure if going from a 9 to 11.1 over that time period is considered bad or not. As i said i am very new to all of this and am a little overwhelmed. I have a Bone Scan and Cat Scan coming up next week. I guess depending on how those tests come out Doc is telling me in his opinion best options are Surgery or Radiation he recomends surgery just remove the prostate. I have some questions from my results that i need answered still. Doc is telling me i am on the upper end of the intermediate scale as far as having an aggressively growing cancer. From what im reading from my results i dont see that, and thats why i have a few questions for the doc still. Anyway i am glad to have found this group, hopefully i can meet some new people make some friends and get some needed info and support. I think i am still waiting for all of this to really sink in. I dont belive this has really hit me yet, and im reaching out.

I'm new to this support group. I'm 67 and live in the Jacksonville, FL area. At my annual physical in October of 2021, I was informed that my lab work revealed that I had an elevated PSA of 6.4. My primary care physician scheduled me to meet with a Urologist at UF Health to discuss the PSA test result and plan a course of action. The plan was for me to retest again in 3 months......in January of 2022 and my PSA level had elevated to 9.6. I was scheduled for an MRI a couple of weeks later and a lesion was detected on my prostate (representing approximately 9% of my prostate). My Urologist then scheduled me for a biopsy procedure and that revealed that 2 of the 12 tissue samples taken showed cancerous cells. I met with a Urologic Oncologist (Surgeon) a couple of weeks after that and was informed that I had Stage 3 prostate cancer with a Gleason score of 7. I was given a number of treatment options and after significant consideration and discussion with my wife, I opted for a RP in June of 2022. The surgery went well (no complications) and I went home the following day. I had my PSA tested in September 0f 2022 and the result was 0.09. I recently had my PSA retested In January 2023 and my PSA level tripled to 0.3 in just 90 days. So, somethings obviously not right and it looks like I've still got some work ahead of me. My Urologic Oncologist has me scheduled for another PSA retest in 6 weeks along with a PET Scan (PSMA). So, I'm keeping a positive attitude about all of this and am determined to "fight the fight" and do whatever it takes to achieve a positive outcome! On a good note......my incontinence is starting to show significant improvement! Just occasional leaks and dribbles and only 1 lightweight pad a day!

Welcome. This is Jim. This is a great place to learn.
The correct use of PSA is tracking of annual values rather than using a single value as a "cutoff". Example: For men < 40 yrs, the "cutoff" at Johns Hopkins was 1.8 ng/mL The cutoff of 4.0 ng/ mL was established without any clinical assessment of the men involved. In truth, one would have to take out men's prostates and step section them to establish they are "normal", which is close to impossible. Having said that, I tracked mine for 30 yrs and it slowly rose to around 1 as my prostate also enlarged. Then the hiatus of my healthcare system denying routine PSA. Before the "pandemic", it was 2.0, A year later it was 4.0 (I was allowed PSA as a professional courtesy). No action was recommended because it was "normal". A year later is was 6.9. That got my doc's attention. Diagnostic MRI sees a lesion. MRI-guided 12 core biopsies reveal cancer in 10, eight of which are Gleason 7, but two being Gleason 8, i.e. high risk disease. PSMA PET sees no signal outside the prostate (but I don't think the detection limit is known).

So, now the dilemma: radiation vs prostatectomy. If all the disease is in the prostate, prostatectomy is a cure with very manageable side effects. The main factors are your general health and age, and access to PSMA PET. In my opinion, a healthy man in his 50s - 60s with low - medium risk pathology and negative PSMA PET is a good RP candidate. However, I swung toward radiation for the following reasons: Improvement in avoiding radiation side effects. I had access to MRI-guided radiation which minimizes likelihood of radiation damage to colon and adjacent structures, and is completed in five days versus thirty. I also had access, prior to treatment, to Hydrogel placement. This gel serves to separate the colon from the prostate. In my case, my large prostate was pressing against the colon, so this was a key to my success: no urinary or intestinal changes.

One caveat. Many radiation patients are recommended to take androgen deprivation therapy such as Lupron, starting 2 months prior to treatment, and continuing for a total of 18 months. It drove my testosterone to zero in 3 months and PSA to 3, and then to zero three months later, but everyone hates the side effects of Lupron. I agreed to this because, regardless of the surgeon and radiation oncologist's optimism, I know something about prostate cancer and pathology. Given my high risk pathology, I would be very surprised if all of the disease is confined to the prostate. Lupron/anti-androgen is for me a low-tech insurance policy. It is claimed to "slow" the growth of prostate cancer. Perhaps. I have not seen the data. However, it is not curative.

Back to you. I would not be concerned with PSA 9 vs 11. I would be extremely concerned with both. Do you have prior values such that you could look at the trend? In any event, how was the biopsy done; how many were taken; what were their pathology? I would not act on a single needle biopsy. Next, you didn't mention your age or general health. I look at radiation as taking a bit of a roll of the dice: are you likely to die of other medical problems before any missed cancer would have a clinical effect? In my case, when my surgeon (original doc I saw) called to tell me about the pathology results (I had already seen them), his first words were: "the good news is, you won't die of prostate cancer". Well, he probably felt somewhat secure in saying that since he knew I was 80 yrs old. However, he knew nothing about my overall health, which it happens, is extremely good for any age, so he made some assumptions. I was not reassured by his statement. I hope this starts to get you back on your feet after your news.

Has any one tried brachtherapy, seed

My boyfriend was diagnosed with prostate cancer in November 2022. January 2023 found out it has spread. February 2023 sent to cancer Dr. Getting a port put in and starting chemo. I'm so scared I need need help I don't want him to die.

After radiation for prostrate cancer has anyone had or seen a drastic change in personality? We are mid 50’s and had been dating for 6 months. In September he told me he had prostrate cancer and emotionally shuts down when he is sick (he warned me about this months ago). He said he needed time and had 30 rounds of radiation. This man texted me daily, we even had a trip booked in October for Vegas. Since September I have initiated every text checking on him. He responds to every text. He recently told me he did not want to date, he was not the same person, his desires and urges were gone and he wants to be single and alone. I saw this man today after 4 months and we talked and he said sex is important and since he is having ED issues I should move on. He said we can be friends after my persistence. Well we had sex, he initiated it. I just don’t understand? Did the radiation change him? I’m the same person

My name is Charlotte and my husband Steven was recently diagnosed with aggressive stage IV metastatic prostrate cancer with cancer present in both the left and right lymph nodes. He completed his radiation treatments and has had to take a three week break from the chemo pills due to heightened liver enzymes. So very disheartening that a cancer such as this can so easily be detected with PSA testing yet at age 55 as a veteran who has lab work done frequently this was never done. With an understanding that stage IV cancer is something that we can only work to slow progression we have so many questions on the future outlook.