Brand new to the site. Diagnosed 3 years ago (PSA around 6, biopsy showed 3 cores cancerous). Made dietary changes, started supplements, lost weight. Now, PSA has climbed to 12, 7 of 12 cores on biopsy cancerous (three 4+4, one 4+3, two 3+4 and a 3+3). Doing pre-surgery tests. Bone scan clear, CT scan shows nothing, no mets). Feel fine, no blood in stool or urine. Have some rough nights (5-6 times up) and more good ones (up once, maybe twice). Seeing a second opinion oncologist today and my urologist next week. Would really like to try alternatives to surgery but am worried about the 'aggressiveness' of the cancer. Are there viable alternatives I can bring up with urologist? Thanks for any ideas. You're the best group around.
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bluesax
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Not to bring up with a urologist, but you should be talking to a radiation oncologist who specializes in brachytherapy. Brachy boost therapy has much higher cure rates than surgery for high risk PC:
I agree with Tall_Allen on this one. It seems reasonable to me to ask your urologist what he thinks about radiation, but you really have to see a radiation oncologist to get an expert opinion from a doctor who has done a lot of radiation treatment.
I recommend that you find a top notch radiation oncologist if you can. One place to look is at the teaching and research hospitals such as are listed here:
Whether you get surgery or radiation, it should be from a specialist who does a lot of prostate cancer treatment. Not all urologists and not all radiation oncologists do that. The urologist I was referred to by my primary care physician offered me a prostatectomy, but when I looked him up I found that he specialized in female incontinence. I wound up being treated in an MRI guided HDR brachytherapy trial at NCI and have had no recurrence of the cancer in 15 years.
I saw several doctors there. The one that was in charge of my case was Dr. Cynthia Menard. She left NCI a few years later and went to Princess Margaret Hospital in Toronto. It appears from a Google search that she's still there as an associate professor.
I thought she was terrific - very committed to her patients, a good listener, good with her residents, knowledgeable but without a trace of arrogance. At the time, she specialized in brain and prostate (two of my favorite organs) cancer. Looking at Pubmed it appears that she's still working in both.
I would have no hesitation in recommending her to any patient.
Tall Allen always has good comments. Radiation seeds cure rate makes it an attractive choice for first line treatment. I was gleason 8 and radioactive seeds was never explained to me as an option. Still, I dont regret my surgery because I had a high chance of recurrence on any choice. This forum is great because you will hear all options mentioned.
Depending on location of the tumors cryosurgery provides the quickest recovery, the best outcome and it's repeatable. That may sound like a negative approach but this site has many whose RP failed and they're stuck with radiation or chemo. None of those are involved in cryo.
I have read several articles about Dr. Gary Onik in Florida who specializes in his own, unique type of cryotherapy. He is supposed to have, at this time, a 100% cure rate. According to what I have read he does a 60 core biopsy mapping out the areas of the prostate that are cancerous. He then freezes those areas twice. Unlike HIFU or FLA that uses heat to destroy cancer cells cryo leaves the dead cells intact. It is said that these cells then act as a sort of vaccine or immunotherapy. I have read that all his patients have remained biochemically free. When I last read about him he had done over 80 procedures. I believe that the side effects are reported to be minimal. Anyone interested in knowing more and verifying this info which is from my memory should make their computer make those whirring noises.
Dr. Onik did my cryo in 2002. He did a double freeze but he didn't do the biopsy.
He followed me for about 9-10 years so I might be in his case results. PSA less than 0.01 since 2002. He didn't have a nerve sparing procedure at that time and i had tumors near the base so the nerve bundles didn't have the success i did.
Glad that your treatment was a success in keeping you free of cancer. Sorry about the other.
I just did accessed an article that LE published about Dr. Onik and his cryotherapy in June 2016. Very few side effects now. A high rate of success regardless of the Gleason grade. You should be able to access it by using the link below.
Screening and Treating Prostate Cancer | Life Extension
I am Gleason 9 4/5 and had a prostatectomy in April so I can only speak for the surgical option. My case is a little tougher because the cancer had wound it's way around the seminal vesicle so I had to have a non-nerve sparing surgery.
I certainly defer to the more experienced guys here. I take Tall Allen's advice very seriously. For me, my oncologist suggested that essentially the survival rates of patients treated with radiation and those treated with surgery is the same. I chose surgery for a couple of reasons: First, I wanted the stuff out and I wanted to attack it. Second, if cancer comes back, it often recurs in the prostate so my thinking was, let's just get rid of it. Here are some things about surgery that I wish I had considered more carefully
--After a prostatectomy, you will likely be incontinent for a period of time. The bladder can take a long time to recover, up to 2 years. My prostatectomy was in April and I still leak enough to have to wear a pad which is no fun. It makes working as an IT guy almost impossible because it screws with my concentration. I'm adjusting and improving but it's slow.
--I wish I had understood that if I leak urine, my sex life may be affected adversely. I asked my urologist's nurse about it and she tried to encourage me by assuring I and my wife that urine is sterile so if I squirt a little during sex--well no problem. I don't know, I guess I think it's a problem.
--In my case, I had the non-nerve sparing surgery. This means (according to my somewhat sociopathic surgeon) that I will never have an erection without needles or a pump. The pills don't work. This is difficult to adjust to.
Still I am very lucky to be where I am. I'm mostly recovered and my PSA is still undetectable. I'm assuming I have some time before the Lupron wears off. I still have one margin on the neck of the bladder that they couldn't get. As soon as my bladder is healed, we plan to do radiation, but if it's not putting out a lot of psa we might wait.
I'd still do the surgery. My recovery was pretty quick and I feel great now. I think my cancerous prostate was actually making me feel bad and tired. Now that it's out, I just feel much better. I'm also on a drug holiday until the psa rises.
Those are my thoughts. We are all brothers in here. Listen to the guys with experience. This cancer is like being in a war of many battles, each one tests our courage. I've met some of the most courageous people here.
You didn't tell us if it affected your bagpipe playing. BTW I saw many door knockers (I collect "stuff") of a bagpiper for sale on ebay. ALSO I'm so old that I was an DPer before they called it IT.
That is good news. 3 months after the robotic prostatectomy, I played in my first parade, a small Blackberry Festival near our town. It was glorious. I wore a pad and leaked all the way. In bagpiping, you first take a giant breath of air, you then push to transfer the air in your lungs into a leather bag. Then you apply more pressure with your elbow to force the air out the pipes and chanter. This pressure system is directly what you don't want to do if you are incontinent. Let's just say when I turned into a garden hose, I had some depends under the kilt. Fuck cancer. I win.
It's the incontinence and impotence that are more unsettling than the chance of recurrence. I'm a 'young' 67 (at least in my mind LOL). Not really sold on radiation, although one of the oncologists explained it to me pretty well. I'm intrigued by the cryosurgery route but live out West. Are there any doctors doing that procedure around Arizona/Southern Cal/Nevada areas? Such great ideas. I thank you all so much. Peace
Yes I can understand that. Since I'm 54 I'm going to do everything I can to be a "young 67:" That means the incontinence and flaccidity were acceptable risks to me. I'm confident the incontinence will go away. Sex, well it is quite a customizable act, lucky and does not require a boner necessarily. We'll adjust somehow. Good luck and keep us posted!
Well, I saw the urologist yesterday for a cystoscopy (ouch!). We discussed alternatives to DaVinci surgery/radiation. He say cryosurgery outcomes aren't that much better. Trying to avoid radiation because I have a non-cancerous mass in my hip (unrelated to PC) which might be affected. He's very experienced in the surgery and confident he can get all of cancer since it is confined to the capsule at this time. I'm leaning toward the surgery. Hoping removing the prostate will do the trick. I'll keep you all posted.
Surgery scheduled for early October. Fingers crossed that it will be the "cure" my urologist (and the medical oncologists I've consulted) says it will be. Hate to give up trying alternatives but am running out of options. Sent records to a Dr. Crawford in Colorado, the closest to me who offers Focal Laser Ablation. Also he does cryosurgery but I'm not sure I qualify (high Gleason scores). Still searching. Diet good, getting more exercise. Staying positive.
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