Newly diagnosed and looking for treatment advice.

Posted by quaddick @quaddick, Sep 23 12:19pm

Hi, everyone. I’m 66 years old and am newly diagnosed with prostate cancer. I currently have no continence or erectile dysfunction, I take no medications, and am healthy otherwise. I haven’t decided on a treatment yet. My cancer is localized to the gland and is low intermediate risk (3+4), so my options range from active surveillance to RP. I’d prefer a one and done treatment, and after lots of online research, I’m leaning towards SBRT. I’d like to avoid ADT if possible, but am worried by my high risk Decipher score of 0.81.
Also, I’ve heard of the Prostox test for predicting urinary problems years down the line from SBRT and IMRT. My radiation oncologist is reluctant to order it for me, because it’s not yet vetted by the FDA. From what I can gather, it’s a legitimate test and Dr. Scholz of the Prostate Cancer Research Institute(many of you are probably aware of PCRI- excellent you tube channel) has positive things to say about it. I am sexually active and still enjoy it, but I am more worried by chronic incontinence as I enjoy lots of outdoor activities.
I would appreciate advice from this community before I make a decision.
Thanks!

My stats:
>PSA 13 bounces up down between 9 and 14 for last few years
>MRI: A 2.2 cm PI-RADS 5 lesion posterior lateral left peripheral zone at the mid gland. An additional
0.6 cm PI-RADS 3 lesion right lateral peripheral zone at the mid gland. No pelvic metastatic disease
findings
>targeted biopsy report: A. Prostate, lesion 1, biopsy: Adenocarcinoma of the prostate, Grade Group 2
(Gleason Score 3+4 = 7/10), in 3 of 3 cores, involving 45% of needle core by volume, Gleason pattern
4 comprises 15% of tumor volume. Perineural invasion is identified. B. Prostate, lesion 2, biopsy:
Adenocarcinoma of the prostate, Grade Group 1 (Gleason Score 3+3 = 6/10), in 1 of 3 cores, involving
5% of needle core by volume. Perineural invasion is not identified.
>Psma pet scan: Mildly tracer avid prostate malignancy. No definite tracer avid nodal or distant
metastases. Clinical stage T1c
>Decipher score .81 high risk

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I was Gleason 4+3 so went with 5 sessions of SBRT and had to do six months of ADT. SBRT had very few side effects: burning urination for a month or so, a weak stream for about two months and some tiredness. ADT was a different story--I took my last ADT pill one year ago and still have some side effects that need treatment.

On the plus side, my PSA tests starting three months after the end of ADT were: .4, .1, .05 and most recently .04 so pretty good for still having a fried prostate. The doctor thinks .04 is going to be my low point but we'll see in December.

You might also want to go to a virtual support group and talk to some of the guys there about their experiences with both surgery and radiation.

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Profile picture for William @willgranger1127

I had High Intensity Focused Ultra high frequency sound HIFU done in 2018 at age 70. No problems before the procedure and none after. The urologist was one of the rarities on the east coast and luckily practiced in Charlotte, NC where I live. There are more people who do this now, I think. The procedure is non-invasive and recovery is reasonably quick. You may want to call Dr. David Konstadt at Carolina Urology at 704/660-3322 and get some information on this. I was on a "watch" for the first couple of years. I started drinking water with lemon juice in it everyday and the tumor did not grow during that time. I've read that cancer prefers an acid environment as opposed to an alkaline one. Lemon juice alerts the body to neutralize the acid drink by becoming more alkaline, I think.
My best for your health!
Will

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Lemon juice in water cannot slow or cure prostate cancer metastasis. The claim is a persistent myth, and relying on unproven remedies can cause harmful delays in seeking effective, evidence-based medical treatment.

Do some searches on the Internet and you will find more information about this.

The treatment you had eliminated the tumor.

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Profile picture for William @willgranger1127

I had High Intensity Focused Ultra high frequency sound HIFU done in 2018 at age 70. No problems before the procedure and none after. The urologist was one of the rarities on the east coast and luckily practiced in Charlotte, NC where I live. There are more people who do this now, I think. The procedure is non-invasive and recovery is reasonably quick. You may want to call Dr. David Konstadt at Carolina Urology at 704/660-3322 and get some information on this. I was on a "watch" for the first couple of years. I started drinking water with lemon juice in it everyday and the tumor did not grow during that time. I've read that cancer prefers an acid environment as opposed to an alkaline one. Lemon juice alerts the body to neutralize the acid drink by becoming more alkaline, I think.
My best for your health!
Will

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Thanks for the HIFU info. There's definitely plenty to consider.

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Profile picture for jeff Marchi @jeffmarc

Lemon juice in water cannot slow or cure prostate cancer metastasis. The claim is a persistent myth, and relying on unproven remedies can cause harmful delays in seeking effective, evidence-based medical treatment.

Do some searches on the Internet and you will find more information about this.

The treatment you had eliminated the tumor.

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@jeffmarc Thanks for the info. My PSA staid the same for two years.

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Profile picture for William @willgranger1127

@jeffmarc Thanks for the info. My PSA staid the same for two years.

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@willgranger1127

Mine stayed undetectable for 3 1/2 years after I had a prostatectomy then my PSA started rising.

I had salvage radiation and it was 2 1/2 years before my PSA started rising again.

Some people don’t have it ever rise again. Wish you that luck.

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First a disclosure: I am a retired orthopaedic surgeon and was still practicing when I was diagnosed.
My biopsy showed a Gleason 3+4, 1.5 cm lesion. I was offered surveillance as this was viewed as a low to moderate risk lesion. My answer: "I am a surgeon; if I have something abnormal that shouldn't be there, it is coming out." I had a DaVinci prosstatectomy and the findings on path exam of the entire prostate showed the tumor to be 4+5, 9/10 with infiltration along blood vessels and nerves. The pathologist said the "the margins are clear" but with tumor within 0.1 mm of the posterior capsule (bet he wouldn't call that "clear" if it were his prostate. I have had residual tumor and have been treated with IMRT and ADT, had recurrence and went on an immuno-Rx trial at NIH (probably not available now due to the funds cuts from the White House) that controlled it for 5 years and now I have metastatic disease controlled with 2-drug ADT + taxotere chemoRx.
Based on all of this, again, I would have the prostate out in a heartbeat. My erectile function was returning fine until the IMRT "fried" my nerves. Now I have erectile dysfunction and incontinence and bladder spasm that has proven difficult to treat. On the chance that prostatectomy would obviate the course I have endured and now face, I would have the prostate out!

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Profile picture for William @willgranger1127

I had High Intensity Focused Ultra high frequency sound HIFU done in 2018 at age 70. No problems before the procedure and none after. The urologist was one of the rarities on the east coast and luckily practiced in Charlotte, NC where I live. There are more people who do this now, I think. The procedure is non-invasive and recovery is reasonably quick. You may want to call Dr. David Konstadt at Carolina Urology at 704/660-3322 and get some information on this. I was on a "watch" for the first couple of years. I started drinking water with lemon juice in it everyday and the tumor did not grow during that time. I've read that cancer prefers an acid environment as opposed to an alkaline one. Lemon juice alerts the body to neutralize the acid drink by becoming more alkaline, I think.
My best for your health!
Will

Jump to this post

@willgranger1127
I was informed that lemon juice was an acid. I drink it occasionally to promote dierutic affect. I was informed was a diuretic. I am not sure if the acid is present the body tries to turn on alkaline but seems to be adding acid to body. Not a dietician so will rely on my medical professionals to give me the medical knowledge they have.

I will asked my Mayo PCP to confirm when I see him next and post what I found.

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My diagnosis was very similar to yours. My PSA was 13 when my biopsy confirmed cancer cells local to the prostate and my PSA had been bouncing between 7 and 11 before then. At that point I had been on active surveillance for about 5 years and my urologist said it was time to get treatment. I was 69 at that time so I opted for radiation rather than surgery after seeing both an oncologist and surgeon. I also said a big NO to hormone therapy as Lupron was suggested. My radiation oncologist made me wait almost 4 months before treatment started and I never found out why. I did 28 treatments with IMRT technology at 2.5 gy per session, 70 total. My oncologist never did describe the possible side effects and gave me a 3 page handout that detailed what they might be. I started getting side effects almost right away after the third week. Urination frequency and burning/stinging while going. Also bowel movements were affected and I go like 3 times a day now 7 months after treatment ended. The urination frequency is ridiculous with me having to go every 2 hours or so when I am drinking liquids as I try to consume 3 huge glasses of water per day along with dinner drinks and tea during the day. The good news is I have no erectile dysfunction per say just a bit less of a libido now that I am 70. My PSA had jumped from 13 to 22 from Sept to December. I messaged my oncologist to ask why and should I be worried and he blew me off and said we would talk about it later. I opted to go to another facility for treatment that finally started in January and dropped the first oncologist and used the radiation oncologist at the facility I went to. So 7 months later I just got my PSA and it was 4.3 so my oncologist was very hopeful the treatment is really working as it was better than he expected so soon. I think I should have been given a longer treatment period with a lower dose of radiation and maybe the side effects wouldn't be so bad. They will tell you that most people see them disappear in weeks or a few months but not the case with me. If anything they have gotten worse. The side effects that are traceable to the treatment are the increased urination frequency/stinging & having bowel movements 3 times a day. I have other symptoms which I am still trying to figure out that they say are not connected to my treatment but my primary doctor can't explain thru blood tests, X-rays and an electrocardiogram. You are considering even a shorter term radiation treatment with a high dose of radiation. They say it's the latest technology but I am convinced the dose they gave me fried a lot more than my prostate even though I had gold seeds done for radiation accuracy recommended by the first oncologist. The second oncologist said it was redundant as the technology of IMRT doesn't need them. I also had no interest in that anal spacer thing that I read about that is supposed to protect your rectum. Sorry to be so long winded but wanted to give you all the details I could as your diagnosis was almost the same as mine. Good Luck with whatever you decide.

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Hi, I posted this on another thread, but I think it fits here too. Remember you only have one life, so go at this with gusto!

Getting information here is a great place to start but get a second opinion from a qualified professional.
Try to find the best cancer center you can find. My suggestions are Mayo Clinic, Sloan Kettering or MD Anderson. I didn't have to pay much for my second opinions as I'm on Medicare, but most insurance companies will allow that. I think out of pocket expenses were less than $1000 if you don't have insurance plus travel. Just because you may like your doctor doesn't mean he/she is the most qualified. You want someone who has done it thousands of times, not someone with a new machine to try out. I told my doctors that I went for a second opinion, and they were happy I did.
Anyways, I had 4+3 and it traveled to the pelvis. I had 5 sessions for the prostate and 3 for the pelvis. Other people had longer sessions, but I'm not sure the reasons for that. I was not a candidate for surgery.
I have had no significant complications from the radiation as of yet and it's been two months.
BTW my treating facility was Memorial Sloan Kettering even with them I got second and third opinions.
Good luck in whatever you choose to do.
Dave

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