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 group.

@web265

"Not sure what to expect." and of course this is the problem. This was the "high anxiety" phase for me. Everyone is different, but, I'll say this, my numbers were close to that Gleason was 6's and 7's in 8 of 12 cores. PSA was 11.5 when we started investigating. Luckily the MRI and Bone scan showed everything appeared to be encapsulated within the prostate.

I consulted with both a surgeon and radiation oncologist as well. The final decision is unique to everyone's personal priorities and comfort levels. I asked which treatment they would go with if it was them, they both said they would go with the method that they specialized in, so, that question was a bit of a waste, haha. I elected for surgery, I'll give you the reasons I did so if you like, but, perhaps it'd be better for after your consultations. 2 mos post surgery at this point. If you have any specific questions, don't hesitate to ask, I'll be happy to share my experience.

Best of luck to you.

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Thank you for sharing. I would like to know your rationale. How are you doing now? Physically? Emotionally? I wish you all the best.

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@drggkelley

Thank you so much for your response. Biopsy on Dec 15th but I have asked to be notified of cancellations, so could be sooner. I am gratified to hear you are doing pretty well. Are you a "faith-based" person? If so, curious how your faith influenced this.

I had a 3.3 in Sept of 2020, then a 4.6 in March of this year followed by 6.2, 5.3, 6.1 over the summer and now 6.4. Hematuria was in March of this year. GP thought it was kidney stones. Had some pain in my side which seem to confirm his suspicions. Did ultrasound in early April and no stones, Bladder test was negative. Did office prostate exam and no discernible issues. Urologist advised to keep doing PSA and then have biopsy if scores remained the same or higher. Imaging identified a lesion and graded it as 5 which is a high probability for cancer (B value DWI. (Score 5; PI-RADS: 5). 20% of cases are benign. Findings also indicated: "Mildly
prominent central gland with features suggesting benign prostatic hypertrophy." So, I am a bit confused with the findings. Is it BPH? Cancer? Both?

My doc says "A month here or there when it comes to the possibility of prostate cancer is not usually worrisome as prostate cancers usually grow very slowly, on the order of years, not months. I am comfortable waiting until Dec 15." So my procedure is Dec 15th.

Also: "no definite evidence of invasion or extension beyond the capsule. There are no signs for seminal vesicle infiltration. BLADDER: Unremarkable; LYMPH NODES: No evidence of lymph node enlargement.

The only symptoms I have had is frequent urination, which seems to be the case now for several years. No sexual problems (well, at least not related to erections – maybe technique!).

Regards!

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"I had a 3.3 in Sept of 2020, then a 4.6 in March of this year followed by 6.2, 5.3, 6.1 over the summer and now 6.4. "

I would most likely throw out the 5.2 score as an anomaly for decision making purposes.

"So, I am a bit confused with the findings. Is it BPH? Cancer? Both?"

I'm not sure if you can have both by definition, I guess it may be possible. I've always thought if you had BPH it was a more uniform enlargement as opposed to lesions or tumors within the gland. Maybe.

"My doc says "A month here or there when it comes to the possibility of prostate cancer is not usually worrisome"
My doc said something very similar, more like "Surveillance is not a good option, we have to do something, but, we don't have to do it right away" The context was in him telling me to do research as to the direction I wanted to go for treatment.

I didn't have any symptoms other than similar to yours either. My biopsy results indicated the concentration of cancer was on the right side, because of this the surgeon also performed a Lymph node dissection on the right pelvic lymph node, luckily that was negative when tested.

To answer the faith question, I have a pretty strong faith, There was/is a lot of prayer and I believed it helped me a great deal with acceptance when I found myself going to darker places mentally.

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@web265

"I had a 3.3 in Sept of 2020, then a 4.6 in March of this year followed by 6.2, 5.3, 6.1 over the summer and now 6.4. "

I would most likely throw out the 5.2 score as an anomaly for decision making purposes.

"So, I am a bit confused with the findings. Is it BPH? Cancer? Both?"

I'm not sure if you can have both by definition, I guess it may be possible. I've always thought if you had BPH it was a more uniform enlargement as opposed to lesions or tumors within the gland. Maybe.

"My doc says "A month here or there when it comes to the possibility of prostate cancer is not usually worrisome"
My doc said something very similar, more like "Surveillance is not a good option, we have to do something, but, we don't have to do it right away" The context was in him telling me to do research as to the direction I wanted to go for treatment.

I didn't have any symptoms other than similar to yours either. My biopsy results indicated the concentration of cancer was on the right side, because of this the surgeon also performed a Lymph node dissection on the right pelvic lymph node, luckily that was negative when tested.

To answer the faith question, I have a pretty strong faith, There was/is a lot of prayer and I believed it helped me a great deal with acceptance when I found myself going to darker places mentally.

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Thank you. Maybe someone can answer my question about simultaneously having both BPH and cancer? There is 1 in 5 chance my lesion is benign. 20% is better than 15%. Glad to hear the node test was negative. How are you doing now? What is your best advice about dealing with where I am right now? Are you Christian? Jewish? Muslim? I am a Christian and totally believe in the power of prayer. I never gave this a though until my hematuria. I have always been concerned with colon cancer that my dad was detected with at 75. He lived to be 86.5. Your comments have been very helpful.

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"my question about simultaneously having both BPH and cancer?"

I don't really see the relevance. If you have the former only you'll be grateful, but, if you have the former and the latter, who cares about the former? If that makes any sense. At least this is where my head goes logically. Should you have cancer, any treatment path you take will likely take care of any BPH issues (mine certainly did!, pee like a 20 year old again!..) and if not, big sigh of relief and decide how to deal with the BPH.

I am Christian, Roman Catholic. Was an alter boy so long I was driving to mass….haha

Dealing with the "right now" is personal. My way was to immerse in work. I took an assignment as a training director for a non profit professional organization that really monopolized my time. In the quiet moments I also engaged in a lot of prayer and reflection. I've always been very grateful for my life up to this point, I've done a lot of cool and fun stuff over the years, different careers, volunteer experiences, great family life etc. That gratefulness of the past helped me to embrace whatever comes now.

Interesting you mention your father. Mine had this issue at around my age (60). Thanks Dad!. He elected for radiation at that time but didn't tell most of us youngins so as to not worry us. He had a relapse at around 85, at that point they simply put him on Lupron treatments for a while. He lived to be 90 with a fairly good QOL till he was about 88. The downturn at that time was simply from age and how he abused his body over the years working as an iron worker, (back issues that caused walking issues etc.)

on the Colon…As proactive as you are being with this issue, kudos again, I'm sure you getting regular colonoscopies, that is also a slow grower as my dr calls it, I'm on the 5 year plan. First one they found polyps that turned out to be benign, second time they didn't find anything, I'll let you know in 5 years…..it runs in my family as well.

I'm doing well now, in surveillance mode post surgery. Working through the ever fun side effects of the surgery, but, my surgeon says I'm well ahead of the curve in that department, so thankful for that!

I think engaging with anyone on the topic is helpful. My wife lost her sister and father to unrelated cancers, she handled my situation way worse than I did. The medical professionals made assumptions with her family members on prognosis (that it was bad) and they didn't realize it. My wife now knows that two family members got cancer and died, that's her experience. Her reaction is sort of ostrich like, she doesn't want to hear anything about it. Everybody reacts a little different, after what she's been through, I understand. Boards like this and finding a couple others that I communicated with directly was a big help.

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I am 65 years old. I was diagnosed with prostate cancer about 5 years ago and chose to have seed implants (don't remember the technical terminology). I was very satisfied with the outcome. My father had the same treatment when it was a relatively new treatment. He died at the age of 93 of other causes after 23 years. So, I was shocked when earlier in 2021 I developed shoulder pain that would not go away. Recently I was diagnosed with advanced bone cancer in the shoulder. It is prostate cancer. I have yet to hear about recommended treatments, but I have to say that my world has definitely been shaken. I would like to hear from anyone who is dealing with metastatic bone cancer. Best wishes to all who have reason to be here.

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@jhowle

Hi, brand new to this group. Diagnosed about 3 weeks ago. PSA was slightly high but had doubled in a few months. Completed MRI and biopsy and diagnosed with a couple of tumors, Gleason score 4+4+8. Told this was a high grade, high risk, more aggressive type of cancer. Going back week after next for bone scan and then meet with Urologist/Surgeon again and also Radiation Oncologist. Not sure what to expect.

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Hi jhowle, your PSA is the same as mine was 3 years ago. Completed Proton Beam radiation and 18 months of Antigen Deprivation Therapy (ADT). If they don't bring up ADT as part of your treatment, ask them about it. My radiation oncologist highly recommended it because of the high risk nature of the cancer. By the way, cancer free for nearly 3 years with PSA negligible. There's a light at the end of the tunnel.

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I was diagnosed with gleason 9 prostate cancer in 2011. It was very aggressive. Untreated the PSA would double every every 3 weeks. I had a prostatectomy in Sep-2011. Afterwards I had 39 radiation treatments and 6 months hormone therapy. That put my PSA undetectable until August-2017 when it showed back up in a big way. I went back on hormone therapy, but it only worked for 6 months before PSA continued to increase. Next treatment was Apalutamide (Erleada), which didn't help much. Then Provenge, which was a waste of time and a complete failure. Then a tumor was found next to my left kidney, which grew rapidly and shut down the function of that kidney. Doctors placed a Nephrostomy tube and bag on my left side to keep the kidney working. Next treatment was Zytiga, which also didn't help much. With the aggressiveness of my cancer, doctors didn't think chemo would help much if at all. On Aug-26, 2019 I was told I was out of options and was given about 4 months to live. I went home. The next morning my doctor called me and said he had good news. He had just received a biopsy report of my tumor and to his surprise I was a match for a treatment called Keytruda. The doctor never consider that an option because Keytruda's not really made for prostate cancer and I was the only prostate cancer patient at Mayo Clinic, Jacksonville to match. I started the treatment in Sep-2019. My PSA dropped from 16.4 to undetectable. My tumor decreased from the size of a baseball to the size of a grape and I'm still here today, (Oct-30, 2021) to write this comment.. God has blessed me in an amazing way.

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@jhowle

Hi, brand new to this group. Diagnosed about 3 weeks ago. PSA was slightly high but had doubled in a few months. Completed MRI and biopsy and diagnosed with a couple of tumors, Gleason score 4+4+8. Told this was a high grade, high risk, more aggressive type of cancer. Going back week after next for bone scan and then meet with Urologist/Surgeon again and also Radiation Oncologist. Not sure what to expect.

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I wish you all the best and am praying for you and everyone here. I have not yet had my biopsy. Discovered a lesion, grade 5 from imaging. Doc says it indicates aggressive. Won't know until biopsy. I am in the same boat. I have found learning as much as possible helps me and this site also is comforting. The good news is that there is a very high probability of recovery. What is your age and family history? How often did you do a PSA? What if any symptoms did you have?

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@kenster

I was diagnosed with gleason 9 prostate cancer in 2011. It was very aggressive. Untreated the PSA would double every every 3 weeks. I had a prostatectomy in Sep-2011. Afterwards I had 39 radiation treatments and 6 months hormone therapy. That put my PSA undetectable until August-2017 when it showed back up in a big way. I went back on hormone therapy, but it only worked for 6 months before PSA continued to increase. Next treatment was Apalutamide (Erleada), which didn't help much. Then Provenge, which was a waste of time and a complete failure. Then a tumor was found next to my left kidney, which grew rapidly and shut down the function of that kidney. Doctors placed a Nephrostomy tube and bag on my left side to keep the kidney working. Next treatment was Zytiga, which also didn't help much. With the aggressiveness of my cancer, doctors didn't think chemo would help much if at all. On Aug-26, 2019 I was told I was out of options and was given about 4 months to live. I went home. The next morning my doctor called me and said he had good news. He had just received a biopsy report of my tumor and to his surprise I was a match for a treatment called Keytruda. The doctor never consider that an option because Keytruda's not really made for prostate cancer and I was the only prostate cancer patient at Mayo Clinic, Jacksonville to match. I started the treatment in Sep-2019. My PSA dropped from 16.4 to undetectable. My tumor decreased from the size of a baseball to the size of a grape and I'm still here today, (Oct-30, 2021) to write this comment.. God has blessed me in an amazing way.

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I am gratified that you shared your story. Was prostatectomy the only option? How are you doing now?

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@waynen

Hi jhowle, your PSA is the same as mine was 3 years ago. Completed Proton Beam radiation and 18 months of Antigen Deprivation Therapy (ADT). If they don't bring up ADT as part of your treatment, ask them about it. My radiation oncologist highly recommended it because of the high risk nature of the cancer. By the way, cancer free for nearly 3 years with PSA negligible. There's a light at the end of the tunnel.

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Thank you for sharing your story. It is reassuring to hear about the positive outcome. Congrats on the outcome. What is ADT in a nutshell? I wish you continued freedom.

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@colleenyoung

@jimlinse, you're so right. We are more than our diagnosis: Mind, Body, Spirit. Other members would appreciate hearing about your experiences with Zytiga in this discussion:
– Zytiga for Prostate Cancer https://connect.mayoclinic.org/discussion/zytiga/

@waynen, I've seen Dr. Walsh's book recommended by others, too. It sure seems like a huge burden to ask the patient to choose the treatment. Luckily you have partners in your care team and experiences of other men. @6608, Bill also had successful proton beam treatment. Wayne, what side effects of hormone therapy and radiation did you experience?

Jim and Wayne, what tips might you have for @norske46 @cupman and @twinsfan as they consider treatment options? What questions should they ask their docs?

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Dr Walsh? What is the book? Do you recommend it?

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@drggkelley

I am gratified that you shared your story. Was prostatectomy the only option? How are you doing now?

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No, prostatectomy was not the only option, but at the time I was led to believe the cancer was still contained inside the prostate. I wanted to get rid of it so I chose prostatectomy. After surgery the doctor said my cancer was definitely not contained. It had already invaded other organs as a stage 4 cancer. So the long battle began.

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