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.

I am new to this group. Just did imaging. Urologist found concerning lesion. Had a few high PSA's since April of this year. Last one was 6.49. I am 64 and a university director. Urologist says lesion is a 5. I have scheduled a biopsy. No family history. Urologist says localized to prostate. No spread. I have no symptoms. Had blood in urine last Spring. GP thought it was kidney stones. It was not. Went to urologist who did an ultrasound and office prostate exam in April and al was well, normal. PSA stated elevation in May, down in June, back up the last two tests. Biopsy scheduled for Dec 25. Any thoughts?

REPLY

I'm sort of new here as well but wanted to reply. My history is being dumb enough to not get a blood test for a few years, find an elevated PSA 11.5, biopsy, Gleasons of 6-7, prostatectomy, in recovery from the surgery and doing pretty well.

I'm sorry to hear that this is something you have to deal with.

Obviously the biopsy will give you the answers you're looking for, but, 6.49 seems like it could really be anything. Also the history here is a little hard to unpack for me. It sounds like you're saying….you had hematuria in Spring of 2020?, went for an office visit with a urologist who did a digital exam and ultra sound and didn't find anything. I'm absolutely NOT a medical professional but I had this exact thing happen and the concern with my urologist when presenting with hematuria and no back pain was a bladder problem. It seemed to be his diagnostic flow chart if you will. We did a cystoscopy, have you done this? (mine actually did turn out to be kidney stones at that time, they were the rare kind that had zero pain associated and easily passed)

Then it sounds like you're saying things were normal as recent as this April. Sounds like you are being considerably more proactive than I was, kudos.

I was unaware there was a grading system for lesions, so I don't know what the 5 indicates, can't comment at all on this.

With the PSA going up and down, I'd think it could be a lot of things depending on how much it's fluctuating. My PSA started up, and kept climbing. Taking the lesion out of the equation, I'd think it could easily be a recurring prostatitis. I've had that happen after a 50 mile bike ride, ( a change of seat fixed that).

My point for all the storytelling is, there are a few other possibilities. Unfortunately this is going to be a looming factor in your mind till you get the biopsy results. In my case, keeping busy and keeping my mind occupied with other things got me through.

I applaud you're decision to find out for sure. My digital exam found no lesions and the ultrasound showed normal size, we came close to not doing the biopsy for three months, that three months in my case could have made a huge difference in spread.

Lastly, you're having a biopsy on Christmas? 🙂 (what? it was a thought!)

If you have any specific questions, don't hesitate to ask them here. It's a great group and was very helpful to me.

Best of luck to you, keep us posted!

REPLY

I am 10 months into Stage IV Prostate Cancer. Diagnosis was December 18, 2020. Treatment started First week of January 2021. Radiation 20 sessions, Chemo 5 months, and now Hormone. Cancer team was outstanding. Had ti move to be closer to family. Starting over with new cancer team. PSA's gone from 118 to 2.25. Learning how to live with cancer. Those words "Can't be cured but can be treated," I first heard last December are still fresh in my mind. I was bedridden for six months. Now I am walking with a cane or walker. I've seen myself transitioning from a total shock phase to learning to live with cancer phase. Cancer is my daily dark cloud. Show up everyday and follows me everywhere. Find reading/learning about other peoples cancer journey therapeutic and healing. Thank you for your stories.

REPLY

Welcome new members @drggkelley @web265 @proftom2

@drggkelley, I too applaud you for being proactive and not delaying getting this investigated. Do you have any questions about next steps or the biopsy?

@proftom2, yes, cancer can be like a dark cloud and constant companion. But it sounds like there's some silver lining. Glad to hear you're walking again. How is it being closer to family? Are they supportive?

REPLY

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.

REPLY
@colleenyoung

Welcome new members @drggkelley @web265 @proftom2

@drggkelley, I too applaud you for being proactive and not delaying getting this investigated. Do you have any questions about next steps or the biopsy?

@proftom2, yes, cancer can be like a dark cloud and constant companion. But it sounds like there's some silver lining. Glad to hear you're walking again. How is it being closer to family? Are they supportive?

Jump to this post

Yes, family is very supportive. I've two kids, 30s+. Each week they ask me, via story worth, a mindful question about my life's journey. I spend the entire week contemplating and writing a reply to their question. Over the top therapeutic. Also, every couple of weeks I share my cancer journey journal notes with them them and my wife. Helps a lot keeping focused on my treatment plan instead going to the Darlin Cloud place.

REPLY
@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.

Jump to this post

Hi @jhowle, Welcome to Connect. I think all of us are uncomfortable when we are not sure what to expect. You are not alone and I'm hoping you can connect with @drggkelley @web265 @proftom2 and others to learn from each others experience. The American Cancer Society has a lot of information that may help answer some of your questions until you meet with your surgeon and oncologist.

Treating Prostate Cancer: https://www.cancer.org/cancer/prostate-cancer/treating.html

Are you able to share what is your biggest concern or question about treatment?

REPLY
@web265

I'm sort of new here as well but wanted to reply. My history is being dumb enough to not get a blood test for a few years, find an elevated PSA 11.5, biopsy, Gleasons of 6-7, prostatectomy, in recovery from the surgery and doing pretty well.

I'm sorry to hear that this is something you have to deal with.

Obviously the biopsy will give you the answers you're looking for, but, 6.49 seems like it could really be anything. Also the history here is a little hard to unpack for me. It sounds like you're saying….you had hematuria in Spring of 2020?, went for an office visit with a urologist who did a digital exam and ultra sound and didn't find anything. I'm absolutely NOT a medical professional but I had this exact thing happen and the concern with my urologist when presenting with hematuria and no back pain was a bladder problem. It seemed to be his diagnostic flow chart if you will. We did a cystoscopy, have you done this? (mine actually did turn out to be kidney stones at that time, they were the rare kind that had zero pain associated and easily passed)

Then it sounds like you're saying things were normal as recent as this April. Sounds like you are being considerably more proactive than I was, kudos.

I was unaware there was a grading system for lesions, so I don't know what the 5 indicates, can't comment at all on this.

With the PSA going up and down, I'd think it could be a lot of things depending on how much it's fluctuating. My PSA started up, and kept climbing. Taking the lesion out of the equation, I'd think it could easily be a recurring prostatitis. I've had that happen after a 50 mile bike ride, ( a change of seat fixed that).

My point for all the storytelling is, there are a few other possibilities. Unfortunately this is going to be a looming factor in your mind till you get the biopsy results. In my case, keeping busy and keeping my mind occupied with other things got me through.

I applaud you're decision to find out for sure. My digital exam found no lesions and the ultrasound showed normal size, we came close to not doing the biopsy for three months, that three months in my case could have made a huge difference in spread.

Lastly, you're having a biopsy on Christmas? 🙂 (what? it was a thought!)

If you have any specific questions, don't hesitate to ask them here. It's a great group and was very helpful to me.

Best of luck to you, keep us posted!

Jump to this post

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!

REPLY
@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.

Jump to this post

"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.

REPLY
@johnbishop

Hi @jhowle, Welcome to Connect. I think all of us are uncomfortable when we are not sure what to expect. You are not alone and I'm hoping you can connect with @drggkelley @web265 @proftom2 and others to learn from each others experience. The American Cancer Society has a lot of information that may help answer some of your questions until you meet with your surgeon and oncologist.

Treating Prostate Cancer: https://www.cancer.org/cancer/prostate-cancer/treating.html

Are you able to share what is your biggest concern or question about treatment?

Jump to this post

I wish you all the best. Did your urologist recommend radiation as a treatment? What is your age? Family history? Symptoms? How are you feeling physically and emotionally?

REPLY
@proftom2

Yes, family is very supportive. I've two kids, 30s+. Each week they ask me, via story worth, a mindful question about my life's journey. I spend the entire week contemplating and writing a reply to their question. Over the top therapeutic. Also, every couple of weeks I share my cancer journey journal notes with them them and my wife. Helps a lot keeping focused on my treatment plan instead going to the Darlin Cloud place.

Jump to this post

My oldest daughter said Dad, no worries. She has dated many guys with prostate cancer (that is another story). She said when she heard prostate she wasn't worried because everyone she knows has fared very well, and it seems we caught it early enough. My guess is you have many miles to go before that "Darlin Cloud place."

REPLY
@colleenyoung

Welcome new members @drggkelley @web265 @proftom2

@drggkelley, I too applaud you for being proactive and not delaying getting this investigated. Do you have any questions about next steps or the biopsy?

@proftom2, yes, cancer can be like a dark cloud and constant companion. But it sounds like there's some silver lining. Glad to hear you're walking again. How is it being closer to family? Are they supportive?

Jump to this post

Thank you Colleen. I posed a question or two in one of my responses to another member. I procrastinated a couple months hoping my psa would decline. It did and then went back up the last two tests over two months. My doc recommended the biopsy in June, so I probably should have had it done by now. Not sure if losing 3 months was a good idea, however, he said if it is cancer it is slow growth and not likely to increase over a few months and he said no evidence it has spread. Thoughts or suggestions?

REPLY
Please sign in or register to post a reply.
  Request Appointment