Advanced Prostate Cancer
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Hi all

my name is Frank. I am 61 years old/ I was diagnosed with prostate cancer in November, PSA 4.6, Gleason of 3 + 4. After MRI and biopsy, my prestigious NYC urologist (who is also a surgeon) told me I should have I the prostate surgically removed. When I asked him what I could expect from the side effects (I had done my homework and knew the odds), I told him the surgery was not for me, he asked me what I had against surgery; I told him that the risk of surgery (due to side effects) for me was too great and that my future depended on the skill of his scalpel. I asked him about a PROLARIS test which he said he does not do. But he did tell me that he studied with Dr. **** at John Hopkins and that his articles are published monthly and that the National Society of Urologists defers to him for their guidelines.....the accolades went on and on.....hahahahaha

I very professionally told him that I was going to seek a second opinion. A second option or a third, is not unreasonable these days.... HIs reaction was incredulous "well if you think you can get better service somewhere else; go for it."

I did.

I called the PROLARIS labs directly and had them advise urologists near me. They gave me two which I visited to obtain the score based on biopsy and discussed the results.

I visited several other urologists and examined all the options, radiation, specifically cyberknife, cryogenics, Hi Frequency ( not yet approved by FDA., therefore insurance will not cover). I felt most comfortable with cyberknife. Non invasive and lower risk of side effects .

When I asked the Cyberknife urologist if he could give me some references ( a tall order for any doctor) he give me two pages of men who he has treated successfully. I called them all and they were happy to report no sexual dysfunction and no incontinence. Some from 10 years ago.

I joined a local support group and spoke with many men who have been recovering from prostate cancer, all varying degrees. Some in worse shape than others, both physically, psychologically and emotionally. I found that men who had surgery (robotic or by hand) were still suffering serious side effects (some after 11 years) of impotence and incontinence. These men had no issues prior to surgery (except that they had prostate cancer). The men who had the Cyberknife treatment were still sexually active and had no incontinence. their erections were their own, no drugs; pump or injections.

The Cybernife is non invasive, however still has minor side effects (dries up ejaculate). And depending on the degree of which the cancer has spread beyond the prostate and vesicles, offers less side effects than surgery.

I had pursued PROLARIS testing, which told me I had a 3.6 rating and put me directly in the middle of "intermediate". not "less aggressive" but not "more aggressive".

I have spoken at length to the Cybernife Urologist who has allowed me to stay in an "active surveillance state" for the immediate future. However I will need to have PSA checked every 3 months, and a biopsy every year.

The Cyberknife was my option of choice, and although at 61 I will not have anymore children ( had a vasectomy years ago) the erection and the ejaculate is how we define outselves as men, and although this sounds crazy, I did not want to give up even the ejaculate. Others have told me that after cyberknife they still had great orgasms, although dry...and that I should not get hung up on it.

Crazy, yes, I know....anyone else have these psychological issues?

21 Replies
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" psychological issues?" You came to the right place. Welcome aboard, hang on, it's one helluva ride.

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😉 thank you

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Funny.. It’s like welcome to the jungle baby! We’re all under the same canopy and go thru the same psychology of APC whittling our manhood away. Ain’t it grand!

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You are the only person qualified to make judgements about the quality of your life. There's nothing crazy about knowing what is important to you.

Good luck!

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After over 40 years of associating orgasm with ejaculation, it took some doing to dissociate the two in my mind. It still embarrasses me to have to explain it to sex partners "Yes, I PROMISE I had an orgasm!" But, other than that, no side effects of treatment after SBRT and my PSA is down to 0.1 ng/ml.

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Good news, thank you for sharing your good news...

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It all sounds good...but if cyberknife fails and you need ADT you will be telling the ladies "Say Hello To My Little Friend"

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Thank you for the reply

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I did 100%. I looked into what is called focal treatments. These treatments are similar to what we learned about women with breast cancer. It turned out that a lumpectomy was as effective as full removal of the breast. Although not proven yet with prostate cancer, The idea is if you have a localized cancer and you are willing to continue monitoring it every three months, a local treatment can kill the cancer and avoid the horrible side affects. I looked into laser too but there is not enough experience yet. However partial chryo has been used now for 15 years and has worked quite well. Dr Duke Bahn in Ventura ca has done many of these and I had him do mine. He won't take a lot of cases if he thinks you are not a good candidate. There are others and you can research "focal treatment online. I had my chryo and had virtually zero side affects. I'd say sexually I'm 90% of before and with Viagra (which I never used before) I'm 110% and zero continance issues. Chryo has been used for many years and is 100% proven to kill the cancer. However partial Chryo is a little newer and has more risks of course than total removal or radiation. But to avoid those side affects??? That's a decision for you and your family. Just wanted you to know about some other options. As everyone on this site will tell you,knowledge is power. Be your own advocate and do your own research. Never assume anyone is 100% right.

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Yes, thank you for sharing your experience.

Your experiences show me that there can be a " right" course of action for me.

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You know what I say "women fake orgasms"....... "I fake foreplay"

Good Luck and Good Health.

j-o-h-n Tuesday 04/24/2018 7:49 AM EDT

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hahaha.... i will have to try that and see where it gets me!😉

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Hi Frank,

check out Proton Beam Therapy....www.protonbob.com - "Brotherhood of the Balloon" or National Association of Proton Beam Therapy (NAPT) Several acquaintances and friends have had the treatment 10 & 15 years ago and as recent as last year - all doing extremely well and no side effects. My husband had HIFU treatment in Germany 10yrs ago, was doing very well, but last November was diagnosed with a recurrence of Prostate Cancer. I have done a lot of research and comparisons of all available treatments and side effects and spoken with numerous people with different treatments- Proton Beam Therapy is the choice of treatment; Proton Beam Therapy targets the cancer without damaging other vital organs in the body and not debilitating side effects as compared to other treatments. My husband will be starting treatments next month - cause of delay - Insurance - after three appeals, KAISER Permanente does NOT PAY for Proton Beam Therapy. Hopefully you have the right Insurance. My husband is eligible for Medicare which will pay 80% of the cost.

I wish you all the best - Elke

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Thank you Elke, i have investigated Proton.

I wish your husband success with his new treatment.

Kind Regards,

Frank😉

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Thanks...I'm thinking positive

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What stage are you?

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Do not know; evidently early on. Cancer ihas not progressed beyond the prostate.

PSA 4.6

Gleason 3+ 4

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Hi Frank. I had HIFU 2 years ago. Incontinence for about 2 weeks afterwards, and then no problems. Only issue is no ejaculate, which you know we men miss. Erections and orgasms are good with daily Cialis which controls prostate growth. Insurance will not pay yet for Cialis nor HIFU. My only concern is PSA is going up; 0.1; 0.2; 0.4; 0.7. Drs say still insignificant but worries me as it is rising. Of course, HIFU can be done again, but another $25K out of my pocket. Good luck to you.

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Thank you BeachChuck,

I am currently in active surveillance, however will have to do sometning at some point. PSA went from 4.2 to 4.5 in 8 months. The Prolaris genetic testing gave me a 3% chance of metastasis over the next 10 years. I will be 72 at that time and am not sure i want to take a risk of it spreading; if i was 85 or 90 it would not be a concern.

I am a very young 62 and actively enjoy sex ( in all its variations) and am reluctant to give anything up without a bloody fight. I have seen many drs and considered every option. I am leaning toward cryo with MRI guidance. While the cryo is not new, the combination with MRI guidance evidently is. As the Dr explained it; the advantage is that they only freeze the tumer, sparing the prostate and the nerve vesticles. It is " minimally invasive" and the procedure is compared to a female " lumpectamy" and performed as outpatient.

I briefly considered Cyberknife; spoke to many men who had successful treatment; still get erect; but no ejaculate. However there are studies that show radiation of any kind will cause the cancer to reemerge after 10 years.

I am delighted to hear you are doing well, and satisfied with your treatment ( YEAH! Score one for our team!)

In the interim, life goes on....

If you are in the NYC area, drop a line and join me for a beer

I will PM you my personal email

Kind Regards,

Frank

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Thanks Frank. I am having the PSA numbers every 3 months. I really do not want to go thru this stuff again. Thanks for the invite for a beer; if you are in the St Petersburg area, we can do beach beer! Best, Chuck

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