SF North Bay -Sonoma County Guys?

[SonomaGuy]

Any other guys up in the SF north bay - Sonoma County - on here as well? I'm feeling pretty alone up here.

[Tall_Allen]

If you send an email to Shannon La Cava at Cancer Support Community, you are welcome to join our monthly prostate cancer support ZOOM meetings. They take place the second Monday of each month from 6-8PM. California residents only. She sends the ZOOM sign-in code the morning of the meeting.

[e-mail]

[SonomaGuy in reply to Tall_Allen]

thank you

[Rowbear]

San Francisco and Santa Rosa here. New to the group.

[SonomaGuy in reply to Rowbear]

H Rowbear. Welcome to the club that nobody wants to be a member of. Sorry to hear about the diagnosis. How are you holding up?

[Rowbear in reply to SonomaGuy]

Holding up well, video appt last week with Radiation Doctor, and next week video appt with the Robotic Surgeon. Still deciding on what the best treatment for me will be.

[SonomaGuy in reply to Rowbear]

Do you have time don’t rush in to any decision until you’ve done lots of research . What are your scores? PSA? Gleason? tumor grade?

[Rowbear in reply to SonomaGuy]

My status:

PSA 6.5

14 needle biopsy--8 tested positive.

2 were 3+4=7

6 were 3+3=6

T1c adenocarcinoma of the prostate.

CT and Bone Scan were good. Urologist recommended having treatment done with in 6 months.

[SonomaGuy in reply to Rowbear]

My scores are, Gleason 6, T1c in one core of 17, with guided biopsy.

Have you had a second opinion on the biopsy tissue itself? If not, I would really recommend getting a second opinion and direct look at the biopsy tissue. you can send your biopsies to Johns Hopkins for an additional direct review of the tissue. It costs about $300 and is all done through the mail. Keep in mind this can cut both ways, as they could come back with a higher grade of cancer, same, or lower - all of which can help guide you in your treatment decision. I sent mine there and they came back confirming the Gleason six score but downgraded the cancer to one core from three. Overall, it's important not to have a knee-jerk reaction to the word "cancer" and just immediately cut it out. Take your time. Decide what works best for you - not partner not your family or friends, but YOU. Keep in mind that PC is a slow moving disease so taking a few months to research and get educated is ok.

It’s important to get lots of opinions. I was diagnosed Gleason 6 Oct 30 2020 & My urologist told me basically that radical prostatectomy was my ONLY option. He stated that radiation wasn't because of my age and that if the PC returned, surgery wouldn't be possible I was 55 and my psa was 5. needless to say, I freaked! So I did some massive research and found many other treatments available. Of course treatment options are based on your scores - Gleason, number of positive cores, and tumor(s) grade. Active Surveillance is a TREATMENT option - and only when I brought this up to my urologist did he reluctantly acknowledge this! There are newer treatment options like HIFU - High Frequency Ultrasound and FLA - Focal Laser Ablation, both of which target specific cancer areas of the prostate and don't destroy all the tissue, so men don’t typically have urinary incontinence or ED. The one side effect is dry orgasms - but hey, dry orgasms are better than no orgasms.

I would also recommend joining the prostate cancer nonsurgical treatments and support group. it really helped calm me down and gave me insight into other options.

Also The American urology association just released new guidelines a few weeks ago that you may want to talk to your urologist about as he may not have seen them. and many urologists are stuck in their own methodologies.

auanet.org/guidelines/guide...

[Rowbear in reply to SonomaGuy]

SonomaGuy, thank you for your info and link. The surgeon I have an appointment with is not my urologist, this will just be an appointment to discuss the procedure. I have an older brother that had a similar Gleason score and went the radiation route. After hearing how it went for him, I wanted to look into the the removal route and and see if that would be a better option. I know that I'm past the active surveillance stage at this point with a score of 3+4=7 . I do like this group and finding out out about others and how they are dealing with this. I'm thankful for all the information I have found.

[cpl901 in reply to Rowbear]

Hi, I m Chris, living in Europe. My diagnosis is similar to yours. I m tending to the surgery route too. Difficult to accept having ED after but hope i will do the best for rehabilitation. Loss of semen also preoccupation. How are doing, wich route did you took ? I m 57 y o bi man with at the moment no ED problem. Would be nice to hear about your experience even if we are all different.

[SonomaGuy in reply to cpl901]

hi Chris. I'm sorry to hear about your diagnosis and welcome to the club that no one wants to be a member of. I am still doing active surveillance. It's been incredibly difficult psychologically with all the pressure from the doctors to go right to radical prostatectomy.. however, I have held the line and I've had no advancing disease at this point and it's been almost 3 years. So I would caution to not be pushed into any quick decision, but ultimately you have to do what works for you for me. I'm putting it off as long as possible because of the potential side effects and risk.

[cpl901 in reply to SonomaGuy]

How old are you now ? when did you recieve your diagnosis ?

I was told that Gleason 6 like you have never spread, so you can be quiet until the rest of your days. I have Gleason 7 3+4 and one core came out 4+3. But my psa went down from 7 to 4.7 within 3 month. The thing is my brain is not a harddisk that i can restart cancelling some datas. I had nice things in my life too. But this is definitly something that noone can understand. But thanks for sharing

[SonomaGuy in reply to cpl901]

your scores are a little worse than mine. I just have one car, Gleason six.. I was diagnosed and 55 and I just turned 58. For me however, I am waiting as long as possible and surgery for me, will be the last resort when there are newer options like HIFU add a laser ablation, in order to save urinary function.

[cpl901 in reply to SonomaGuy]

I think and hope any surgeon can preserve urinary fontion if the organ was not irradiated before, but for erectile function there is no rule. Preserving nerves is just a word. HIFU is may be ok, but the operator must be good, the patient has to have one or two focal lesions not more than Gleason 7 very visible on MRI. Not my case, not very visible on MRI (Pirad 3). Waiting is ok, but biopsies and of course psa have to be done regularly, plus sometimes MRI.

[cpl901 in reply to SonomaGuy]

Putting it off is ok, but if some treatment has to be done, especially surgery, it s better to be in shape and not too old, that s what makes this cancer so cruel.

[MackworthGuy]

East Bay area here. Good to have company even if the reason is not fun.

[SonomaGuy in reply to MackworthGuy]

indeed. How are you?

[MackworthGuy]

I’m good. PCa is common in my family so all this is not unexpected for me. It’s a bit different when it becomes real but like all life’s challenges I tend to just take it in small chunks and look forward to getting to the other side of treatments. Thanks for asking.

[SonomaGuy in reply to MackworthGuy]

You’ll get through this! good way to approach it in, in small chunks.