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Newly diagnosed and looking for treatment advice.
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
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You have a high decider score and a high percentage of cancer in the 3+4 cores.
PNI Is extremely common. I had it and I’m still around after 15 years. I find it in a lot of biopsies. While they say it is aggressive, people usually have more aggressive things in their biopsy than that. Yours doesn’t seem to have much more from what you have posted. The thing is PNI can be pretty much resolved by surgery or radiation.
Because of the high decipher score, I would consider Surgery. The reason for that is you have a high chance of a reoccurrence. If you get a reoccurrence after surgery, you can have salvage radiation. That is not true if you have radiation first. You would want to ask your doctor if they can spare the nerves if you get surgery. Of course you can have SBRT radiation to zap metastasis that pop up if you have radiation, but that’s all.
If you had said you had a 3+4 and your decipher score was .2 I would say go for the radiation, but that’s not your case. You want to have a long progression free survival. Surgery would give you a better chance.
You have a PIRADS-5 Which is definite prostate cancer. While you are a 3+4 like I was, after surgery, I was a 4+3. I know a lot of people that found they had a higher Gleeson score after surgery. Would yours be higher after surgery, considering the high percentage of cancer in your cores and The high decipher score, it is more likely.
Speak to a radiologist and a Urologist who does surgery. Try going to a center of excellence and see What they feel would be the best treatment. It can’t hurt to get a second opinion since you want to wait.
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8 ReactionsMy numbers were almost identical. Age 58 with one 2cm lesion with one small area of 4-3-7, rest 3-3 or 3-4 or clean. PSA was 6.9 after biopsy, 5.7 before. I opted for RARP by Dr Abdul-Muhsin at the Scottsdale campus. 6 weeks post op and have complete bladder control. Only used pads for 2 weeks. Did 5000 kegels in the 34 days leading up to surgery. ED is about 90% gone so everything seems to have lined up for me. Of course I worry about reoccurrence given my age but that’s pretty much life.
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3 ReactionsThanks for sharing that. My urologist refered me to a radiation oncologist and a surgeon. One thing I didn't mention was that the surgeon suggested HIFU on just the big 3+4 tumor followed by active surveillance. I'm not sure about that; seems like just kicking the can down the road. I have been thinking of getting a 2nd opinion at a center of excellence. About a possible recurrence after radiation- can't they just radiate it again?
Thanks. Glad to hear about your recovery from incontinence and ED. Gives me a bit of confidence. Can I ask why you chose RARP over radiation?
After radiation of the prostate and the area around it, they can never be radiated again. You get the maximum radiation to that area whether it’s the first radiation, treatment or salvage radiation.
They can zap metastasis that are in other areas like on the bone or in other places in the body, but that area is no longer able to be radiated.
It’s possible HIFU might work, but usually with more advanced cases, they will not do that type of treatment
If you had HIFU And it was unsuccessful you could have radiation to that area.
Please do go to a center of excellence and get a full work up with multiple doctors to find out what the best options are for you.
Mostly due to my age, 58 and that surgery is off the table after radiation. Being low to mid on the aggressive scale and still being encapsulated I just wanted it out. One less thing to look over my shoulder at. Also being higher risk after 35 years as a firefighter played into the decision. Father was diagnosed at 65 and had radiation and lupron. He had lymph node involvement so they wouldn’t do surgery. This was 1998. He lived until 87 with no further issues.
You might have been exposed to FF foam= carcinogen. We were exposed to this in the Navy. I m between your father’s age and your age-76, also had pelvic node involvement. ADT worked for me so far. Vietnam gave me this and the VA is paying for it. Hope I make 87 like your dad did.
As @jeffmarc rightly points out, you have lots of corroboration that the cancer is real and needs treatment, but I hope it's reassuring that Gleason 3+4 is the absolute lowest result that oncologists are even willing to call "cancer", so you caught this as early as you could have, and your prospects are excellent. Both SBRT and surgery are equally-effective treatments for patients in your situation, though neither comes with a 100% iron-clad guarantee, of course: cancer is a tricky little devil.