Living with Prostate Cancer: Meet others & introduce yourself

Best wishes. I had a prostatectomy and radiation about 20 years ago. Incontinence has been with me since. A few years back my urologist implanted an artificial urinary sphincter which helped my urinary incontinence a lot. I just wear pads for the occasional accident. I’m not bothered by fecal incontinence. The surgery was in and out. Not too bad. A few weeks later I was good to go. Pun intended. Good luck.

Can you possibly post results of further studies into the pros and cons of each procedure. I am about to have transrectal 18 needle biopsy as the preference of my urologist. This even though I suggested MRI and targeted biopsy if anything suspicious was noted. PSA 8 now. Two years ago had MRI that scored 2 out of the 5 point rating for likelihood of cancer (ignorant of this except 1 is best for no cancer). At that time PSA was 6. Mine has always run high at 5+. Age 74

Dear Ratchett, here are some references that you might want to check out. The first is more information on the study that I quoted in my post.
https://www.practiceupdate.com/content/systematic-trus-biopsy-vs-mmri-targeted-biopsy-for-biopsy-naive-men-at-risk-for-prostate-cancer/113309/62
https://pubmed.ncbi.nlm.nih.gov/31897680/
https://www.practiceupdate.com/content/eau-2018-mri-of-the-prostate-reveals-more-clinically-significant-cancers-and-reduces-overdiagnosisnbspversus-standard-biopsy/65548/62
This study has some caveats on it's use but it's a little old. https://www.practiceupdate.com/content/comparison-of-mri-guided-prostate-biopsy-and-transrectal-ultrasound-guided-prostate-biopsy/11996/62

Here's a study comparing 2 different types of ultrasounds with TRUS.
https://www.practiceupdate.com/content/aua-2019-novel-high-resolution-ultrasound-better-than-conventional-ultrasound-for-prostate-cancer-detection/83324/62
I hope that helps.

I have a friend who had the MRI targeted biopsy and he said it took longer then the TRUS because they were very careful to get the samples from exactly the right spots. He was diagnosed with a Gleason score of 4+4.

Hello: This is my first post. New diagnosis of prostate cancer 09/07/2021. gleason 8 on first pathology MRI report...upgraded to gleason 9 when evaluated by a second pathology report. Apparently high risk. Am trying to get pencil beam proton therapy ASAP. Checked with one well known center and there is a 6 month wait list...am in process of contacting two other proton providers to see when they could begin treatments for me. Bone scan was good. Hoping that it doesn't spread before I can begin treatments...there is extra cellular extension.
Any comments appreciated...

Hello @bowmed and welcome to Mayo Clinic Connect. I can understand with your gleason score why a 6-month wait list doesn't seem fitting and think it is great that you are reaching out to other centers that may be able to provide you care sooner.

That said, in the event you'd like to add another to your list to explore, I have added information on Mayo Clinic's proton beam program.

- Proton Beam Therapy Program:
https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/home/orc-20185488
Where have you tried to date? Perhaps other members can offer some suggestions as well.

Hi Bowmed, I can see your concern. A Gleason of 9 is serious. With the radiation treatment have they suggested Antigen Deprivation Therapy to slow the progress of the cancer and to shrink the prostrate? It takes 2 months after the ADT shot to start radiation. Three years ago when I was diagnosed with a Gleason score of 8, I was able to get into the Phoenix Mayo Clinic a week after they checked my diagnosis and started radiation 2 months later. Don't know if they are backed up now.

I believe that they also have Volumetric Modulated arc Radiation treatment. It's a photon radiation therapy but causes less damage then IRMT. My radiation oncologist at Mayo recommended it to a friend of mine with a Gleason score of 8.

Hope you are able to find a place to get in earlier. I am glad I got the proton beam therapy. There were a few bumps along the way but the results were good.

Hello Bowmed,

I was diagnosed with a PSA of 7.9 and a Gleason of 4+3=7. I contacted the Mayo Clinic in Phoenix in July of this year, had a consultation with a radiation oncologist, had a bone scan (clear), minor surgery for Space OAR and prostate markers, and just started Pencil Beam Proton Therapy last week. I’ve had 2 sessions thus far of the Proton Therapy and will have my 3rd today. A total of 28 sessions have been scheduled out for me. I did a ton of research regarding how to proceed with treating my cancer and feel, so far, that I made a good choice. The daily Proton treatments are a piece of cake. The stress of getting to the point of starting treatment, on the other hand for me was quite unnerving. So, I would encourage you to keep trying to see if you can go the Proton route. Best of luck and hang in there….

Hello kansascityhusker:
I am in contact with Mayo/ Phoenix and am sending chart notes for consideration. also in contact with California Proton in San Diego...So, you started in JULY and just had your first treatment LAST Week. Are you having ADT as well? Did you have to wait 2 months after ADT shot?

Thanks!
Bowmed

Hi Bowmed,

I opted to NOT do ADT. In speaking to Mayo, I was offered the opportunity, given my cancer being rated intermediate risk, to join a clinical trial at Mayo where they were studying outcomes of Proton with ADT vs Proton without ADT. This clinical study has been in process for several years and I am told is just now wrapping up. The “preliminary” results show that there is basically no difference in outcomes for those that took the Proton with ADT vs those that did Proton without ADT. So, I opted to not do ADT. In terms of the time element for starting the Proton sessions, they were delayed at my request as I was vacationing in Colorado. My urologist had told me that given my cancer status being evaluated as intermediate risk, that there was no need to start treatment immediately.

Hope the above is helpful….

Hello Amanda:
MD Anderson advised me to get ADT ASAP but i have been unable to get an appointment with stanford until 10/12/21...trying to see if a local urologist will provide the ADT shot...might have to take a flight to houston just for the shot...i am also in contact with mayo phoenix...
i was told mayo jacksonville does NOT have proton therapy by a contact from phoenix but they sent me a package yesterday fed-ex!
am also in contact with california proton in san diego...got too much moving too slowl...