Living with Prostate Cancer: Meet others & introduce yourself

I am very sorry to hear your story. It is unfortunately very common. My name is Jeff.

In August I talked with a good business friend in Sweden. We stayed in touch monthly. He is 70 and very active. He told me that he had just been diagnosed with Stage IV prostate Cancer. Metastasized to bones and lymph nodes.

I had not had my PSA checked for about 6 years, age is 64 at the time. Had it checked through WEBMD, who used Labcorp for testing. Test showed PSA of 12. I freaked out. Had another test and it was 10.5. Saw a Urologist who performed another PSA, still 10.5. Two days later had 13 core biopsy. Cowered all weekend waiting for results. Gleason 6 Cancer diagnosis. My panic mode went into full gear. Fortunately my Urologist gave me a reading list which included Dr. Walsh's "Surviving Prostate Cancer". My wife bought it immediately and we both started reading. With each chapter my blood pressure dropped and I began to start to understand that Prostate Cancer in low risk stages is not like many other cancers which progress rapidly.

Because of elevated PSA I chose to have it treated with Proton Beam Radiation Therapy at Mayo Rochester. Completed 5 dose regimen on January 19, 2023. Other than some inflammation causing slow urination there have been no side effects to date.

All men react differently. Some immediately want a RP, just cut it out. Others want Active Surveillance, some want Radiation in one form or another. My personal lay opinion is that all men diagnosed at whatever stage should do their homework. Dig in, look for multiple opinions from the experts on which direction to pursue. Do not get bullied by someone insisting their approach is the only sane approach and taking an alternative approach is like committing suicide.

Stage IV is not Gleason 6 and requires a much different approach, even so, prognosis is still better than other aggressive cancers. My friend in Sweden is taking hormones but has decided to forego chemo at least for the time being. He has a very goood probability of living a full life for at least another 5 years.

Stay strong and although difficult, try to understand just how fragile men are when confronting this type of challenge.

Best wishes to you both.

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.

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 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.

Has any one tried brachtherapy, seed

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.

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!

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.

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

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?