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?

Some people on this thread have asked questions about biopsys. This recent study might help in looking at the traditional 12 sample transrectal biopsy done by many urologists and the mMRI Targeted biopsys. It's clear from the research that, if you can get it, the mMRI is a better choice.

The authors of this multicenter, randomized, noninferiority trial compared magnetic resonance imaging (MRI)–targeted biopsy with the standard systematic 12-core transrectal ultrasonography (TRUS) biopsy procedure in men with clinical suspicion of prostate cancer. MRI-targeted biopsy in men with a PI-RADS score ≥3 was noninferior to standard TRUS biopsy, with the detection of clinically significant prostate cancer in 35% of patients undergoing MRI-targeted biopsy versus 30% with the TRUS biopsy. In addition, 37% of patients in the MRI-targeted group were able to avoid prostate biopsy due to low PI-RADS score.

These results indicate that MRI-targeted biopsy procedures may allow for fewer prostate biopsy procedures with similar rates of detection in men with clinical suspicion of prostate cancer.
– Emily Miller, MD

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@semeon

When I was doing my treatment research my final decision was between HIFU and FLA focal laser ablation. They are both ablation methods that work well.you may want to research FLA if you have not. Talk with the Sperling clinic. Dr Sperling in Florida. I wish you well.

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Here is the conclusion of a clinical trial that was published 1.5 years ago. Things might have changed since them. This was reported by the NIH (National Institute of Health).

Conclusion: Focal laser ablation is a promising technique for treatment of clinically localized PCa and should ideally be performed within approved clinical trials. So far, only few studies have reported on FLA and further validation with longer follow-up is mandatory before widespread clinical implementation is justified.

It seems that at least in 10/2019, FLA was just in clinical trials. Here is a link to the study, https://pubmed.ncbi.nlm.nih.gov/30671638/

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@dandl48

Here is the conclusion of a clinical trial that was published 1.5 years ago. Things might have changed since them. This was reported by the NIH (National Institute of Health).

Conclusion: Focal laser ablation is a promising technique for treatment of clinically localized PCa and should ideally be performed within approved clinical trials. So far, only few studies have reported on FLA and further validation with longer follow-up is mandatory before widespread clinical implementation is justified.

It seems that at least in 10/2019, FLA was just in clinical trials. Here is a link to the study, https://pubmed.ncbi.nlm.nih.gov/30671638/

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I chose to use the FLA approach with Dr Sperling in Florida, there were no clinical trials in 2014 when I was diagnosed. It really was a simple procedure and I did it 2 times once again in 2018.

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@klaken

HI,
Let me share my experience, which may have no bearing on your decision process. At 47 I had a PSA of 7, which suggested surveillance. By the next year it rose to 9 (rule of thumb is PSA should not be higher than the 1st digit of your age). And I was only 48 so an unreasonable reading would have been 4 to 6. Thus began biopsies every 6 months which were negative. By the time I was 50 the biopsies were every 3 months and my PSA was now 14. The last biopsy was positive in one sample, so I went ahead with the RPA surgery. The work-up included full body scan before the surgery. The cancer was contained within the gland and no lymph nodes were positive.
I am now 75 and PSA still below below .1. Looking back, by the time I was scheduled for the last biopsy I was feeling like a hunted animal, and told my wife that I wasn’t going to have any more biopsies. I insisted that the doctor was a hunter and I was the game.
Some things to consider: 1) Any history of urinary infection? This can affect PSA readings. 2) Do you hard exercise on a bike which can also aggravate the prostate gland? 3) Do you have a genetic history where a parent or grandparent had known prostate cancer? In my case all my relatives Dad and uncle were diagnosed with elevated PSA, but died from other causes.
Deciding which coarse of treatment is difficult due to provider bias. If the urologist is a surgeon, then surgery is the recommendation and if they are not then radiation may be the recommendation. Remember my data points were in 1995 and I suspect there have been improvements in treatment. Again, at the time of my treatment the post surgical problems of impotence and incontinence were the same after 2 years as far as the number reported. When it comes to treating cancer with an unknown rate of spread I believe that treatment should not be avoided. I can appreciate the roller coaster ride you are on as you face this very difficult decision. Best wishes, Keith

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@klaken over the last 12 years or so I have gone to 3 local urologists who did biopsies, my last test had to be analyzed at Mayo MN.. the gave me a Lupron shot and then were going to do the 20 higher power radiation in 2 months..after the prostate had shrunk..
Since the local radiation oncologist had trained at Mayo and the local had the same equipment.. I went through the radiation 20 treatments ending in Aug 2019.. my 3 month and 6 month PSAs have been 0.5 since the Radiation.. Yes I had a little urinary trouble.. but took flomax and still do.. Before the Radiation they inserted a spacer to move the bowel away from the prostate.. I also have Gastroparesis so my battle with diarrhea is ongoing but using probiotics regularly works well.. I am 83.. and am glad I went to Mayo..for the verification..

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Diagnosed 09/15/2019
Age – 65
5 of 12 cores showed positive. One core was high volume, >50%
Gleason 6 in all cores
Genomic test showed low risk to very low risk for aggressive cancer
Chose Active Surveillance
Last PSA was 5.8…(one year earlier was 4.8) been an ebb and flow for past several years with the 5.8 being a spike.
Next PSA assessment in a week. 6 month follow up with urologist at that time. All DRE to date have been negative.

Comments?

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@sanway

Diagnosed 09/15/2019
Age – 65
5 of 12 cores showed positive. One core was high volume, >50%
Gleason 6 in all cores
Genomic test showed low risk to very low risk for aggressive cancer
Chose Active Surveillance
Last PSA was 5.8…(one year earlier was 4.8) been an ebb and flow for past several years with the 5.8 being a spike.
Next PSA assessment in a week. 6 month follow up with urologist at that time. All DRE to date have been negative.

Comments?

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Having a similar, but more recent PSA and biopsy result. Mayo said that active surveillance consisted of PSA twice per year and MRI annually. Have you had MRI as well?

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@tinker

Having a similar, but more recent PSA and biopsy result. Mayo said that active surveillance consisted of PSA twice per year and MRI annually. Have you had MRI as well?

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Yes on the MRI. 3T to be done annually. PSA is twice yearly.

Thank you for the reply.

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My husband is 74, was diagnosed stage 3a prostate cancer, had radical prostatectomy in December 13, 2019, ADT and 40 days of radiation and life was never the same since.
Fatigue all the time,
absence of energy,
hot flashes now more then before and more severe ( his testosterone level is 0. Yes, you read correctly ZERO, instead of 300-1000)
night sweats,
weight gain,
loss of muscle mass,
pain from the waist down,
100% incontinence,
change in bowel movement,
atrial fibrillation due to lack of testosterone,
hmm, what did I forget? Oh, about sexual functions doctor warned in advance that he can not spare the nerves. So, penile shrinkage for sure and no sexual desire whatsoever. His PSA was undetectable a half a year ago.
I think what makes him going is his government job, he works from home, 5 days a week from home office. Afternoon is spent in his big chair watching TV and checking stock market. He does not want to go for walks. And I am not talking about long walks. I take him in a car to places ( he still likes shopping :). ) The pandemic did it's job, we were isolated , masked, very careful not to bring some infection home and that paid off – so far so good.
Thank you for accepting me in the group.

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@baibaelizabete

My husband is 74, was diagnosed stage 3a prostate cancer, had radical prostatectomy in December 13, 2019, ADT and 40 days of radiation and life was never the same since.
Fatigue all the time,
absence of energy,
hot flashes now more then before and more severe ( his testosterone level is 0. Yes, you read correctly ZERO, instead of 300-1000)
night sweats,
weight gain,
loss of muscle mass,
pain from the waist down,
100% incontinence,
change in bowel movement,
atrial fibrillation due to lack of testosterone,
hmm, what did I forget? Oh, about sexual functions doctor warned in advance that he can not spare the nerves. So, penile shrinkage for sure and no sexual desire whatsoever. His PSA was undetectable a half a year ago.
I think what makes him going is his government job, he works from home, 5 days a week from home office. Afternoon is spent in his big chair watching TV and checking stock market. He does not want to go for walks. And I am not talking about long walks. I take him in a car to places ( he still likes shopping :). ) The pandemic did it's job, we were isolated , masked, very careful not to bring some infection home and that paid off – so far so good.
Thank you for accepting me in the group.

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The side affects you describe of his surgery, ADT, and radiation sound about "normal." Some of them such as weight, muscle, can be addressed through diet and exercise.
Your medical team should be able to discuss with him ways of mitigating the hot flashes, notice I did not say eliminate.
If he is not seeing a cardiologist, consider adding one to your medical team given the known cardio vascular side affects of ADT.
If he is still on ADT, consider asking your oncologist or urologist about intermittent ADT. It may be possible to stop, actively monitor and then restart treatment based on clinical data such as increasing PSA, imaging…
As to the sexual side affects, particularly from non nerve sparing side and ADT, well known and a challenge gto reinvent intimacy.

Kevin

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@baibaelizabete

My husband is 74, was diagnosed stage 3a prostate cancer, had radical prostatectomy in December 13, 2019, ADT and 40 days of radiation and life was never the same since.
Fatigue all the time,
absence of energy,
hot flashes now more then before and more severe ( his testosterone level is 0. Yes, you read correctly ZERO, instead of 300-1000)
night sweats,
weight gain,
loss of muscle mass,
pain from the waist down,
100% incontinence,
change in bowel movement,
atrial fibrillation due to lack of testosterone,
hmm, what did I forget? Oh, about sexual functions doctor warned in advance that he can not spare the nerves. So, penile shrinkage for sure and no sexual desire whatsoever. His PSA was undetectable a half a year ago.
I think what makes him going is his government job, he works from home, 5 days a week from home office. Afternoon is spent in his big chair watching TV and checking stock market. He does not want to go for walks. And I am not talking about long walks. I take him in a car to places ( he still likes shopping :). ) The pandemic did it's job, we were isolated , masked, very careful not to bring some infection home and that paid off – so far so good.
Thank you for accepting me in the group.

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Hi @baibaelizabete, welcome to the Prostate Cancer group. I can see you are concerned about the side effects of treatment that your husband is experiencing. It also sounds like you miss him, too. How are YOU doing?

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I live in Canada and I have been on Lupron for 3 years following FLA in 2014 and 2018. I am encountering most of the side effects and see my Dr in a week as I I want to take a break from Lupron. Has anyone in the group been on Lupron for an extended period of time?

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@semeon

I live in Canada and I have been on Lupron for 3 years following FLA in 2014 and 2018. I am encountering most of the side effects and see my Dr in a week as I I want to take a break from Lupron. Has anyone in the group been on Lupron for an extended period of time?

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Semeon, you may be interested in these related discussions that @jonbuuck started:
– Length of Lupron effects after treatment concludes https://connect.mayoclinic.org/discussion/length-of-lupton-effects-after-treatment-concludes/
– ADT how long post Radical Prostatectomy & Radiation Therapy? https://connect.mayoclinic.org/discussion/post-radical-prostatectomy-and-adjuvant-radiation-therapy/

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