I’m new here, and have been reading posts for the past few weeks. It has been very helpful. I’m 54, and was diagnosed with prostate cancer this summer.
PSA 4.1
Exodex Intelliscore 79.34
MRI: prostate 25cc, "15 x 10 mm right posteromedial apex peripheral zone lesion. PI-RADS 5, very high. Overlying capsular bulging and irregularity, likely representing EPE." No perineural or seminal vesicle invasion.
My MRI guided biopsy results were:
Gleason 3+4, 7/12 cores positive, plus 5/5 cores of lesion positive.
Classified as "Unfavorable Intermediate Risk"
I’ve had a clean bone scan and I am scheduled for a PET scan tomorrow to check lymph nodes for some abnormalities on the MRI.
I’ve met with two reputable surgeons at NYU and Memorial Sloan Kettering (MSK) in New York. They’re both very positive and on the same page that I’m a good candidate for robotic surgery and would tolerate it well with a good long term prognosis .
The two radiation oncology opinions I’ve received, however, could not be further apart. One, from NYU, suggests a 5 dose round of SBRT and nothing more. He says I’m not a good candidate for brachy because of the possible extra-prostatic extension (EPE). He thinks ADT is "controversial" and not necessary.
The other radiation opinion, from MSK, suggests a combination therapy: 6 months of ADT, high dose brachy, and 5 doses of SBRT. The doctor cites the improved long term outcomes for as the reason for combination therapy, and in his words, he “wouldn’t have it any other way” for someone my age.
One of my greatest concerns is potency and sexual side effects.
My sexual function is fine, and I’m not encouraged by either treatment plan in terms of sexual side effects. The 6 months of ADT concerns me as much as surgery does. I've consulted with a sexual health doctor at MSK who warned 6-9 months of ADT can have irreparable effects in terms of atrophy of erectile tissue and nerves. Is there a chance I would fare better with surgery?
I would love to hear from others who have been through this… I want to beat the cancer, obviously (and I have an extensive family history of prostate cancer), but I’m also very concerned about quality of life and sexual function. I’m especially interested in hearing from those who’ve been through combination therapy (ADT/Brachy/SBRT) and what the experience and side effects were like. (I'd also love to hear from others who went the path of surgery with a similar profile and what the long term sexual side effects were.)
Thanks for reading, and for any advice.
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MAL208
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1. Surgery - if your main concern is potency preservation, this is your worst choice. It is also your worst choice for odds of recurrence-free survival, especially with EPE.
2. Brachy boost therapy +ADT: Certainly the option with best track record for a cure. ADT can affect potency preservation, but is mostly a risk factor for atrophy/ size loss. I know guys who have averted that with rigorous penile work (ED meds, pump, frequent masturbation).The elevated prostate radiation is also a risk factor because it can cause scar tissue to build up in penile vasculature. This is less a risk factor in men of your age (older men are more prone to stenosis) and in men who have no ED. The other RO is probably thinking about LDR rate brachytherapy - with HDR brachy, the EPE is not an issue. Serious late-term urinary retention is a relatively high risk (19% of men).
I am newly diagnosed so cannot offer single-modal versus multi-modal advice other than based on NCCN guidelines. Based on NCCN RT treatment guidelines, it seems the NYU doctor is treating you as favorable intermediate and the MSK doctor is treating you as unfavorable intermediate.
I also had a targeted needle-biopsy so the number of positive cores in the same area may need to be treated as only one positive. In other words, what was the criteria for categorizing you as unfavorable intermediate versus favorable?
My best advice is to do your own research. To this end, one of the best web sites to start with is prostatecancerfree.org it shows the results of different treatments based on well documented studies. Be your own decision maker.
Hi there. My situation: 4+3, Grade Group 3 (localized)…I was treated with 15 sessions of EBRT in January 2021 and 1 session of HDR boost in February 2021 with 4-month regimen of ADT (Lupron). First PSA follow-up in May was .32 (down from 17 prior to treatment). Radiation side effects were minimal; Lupron is a different story. I'm keeping up a relatively rigorous exercise regimen to fight off weight gain and muscle loss. ADT technically ended on May 5… looking forward to increases in T.
With regard to sexual side effects I was pleased to not experience ED but Lupron did significantly reduce sexual desire; it was weird to experience an erection and say "so what?" Sexual intimacy is very important for my partner and me so we are doing our best to "keep the ball rolling". I'm taking nightly Cialis to facilitate nocturnal erections and engage in sexual intimacy/masturbation daily. I am now just over 4 months beyond the technical end of Lupron and I am very pleased to experience the return of sexual desire. I do not know what my current T level is but it was <5ng/dl in May (way below 20 ng/dl (castration level).
So my "spark" is returning and I can easily participate in penetrative sexual intimacy. Orgasms are great but there is little or no ejaculate…that is not an issue for us. I understand that the sexual side effects of radiation therapy can be delayed over a period of a few years but I am determined to do anything I can to avoid that outcome. By the way, I'm 69. The best to you!
For sure, following my prostatectomy my sexual ship sailed permanently - but I knew that going in and at 67 (then) I made my peace with it. I had Casodex and Lupron and then 39 radiation treatments in the months after my surgery, and my PSA has been undetectable for 6 consecutive tests. There certainly were side effects along the way, but all in all the treatments were a success. I knew what to expect and what the downside(s) would be, and ultimately I am glad I had them done.
I had HDR brachytherapy, then EBRT (5 weeks). Currently on ADT. Gleason 8. My cancer was in a lesion in the transition zone with probable EPE and possible seminal vesicle invasion. PSA was high. This course of treatment was made based upon hours and hours of research. All of the doctors I spoke to at MSK were fantastic. The HDR went well. The 5 weeks of EBRT was just something that had to be done. ADT for 6 months is easy. I am about to start year 2.
If I were you, I would want a PSMA scan to see if the cancer has spread. If it has, then you are going to need radiation anyway. I would pay for it if I had to. But given my situation radiation and ADT was the best choice.
Update.... I had an Axumin PET Scan on Monday and reviewed it with my RO yesterday. It came back clean in terms of lymph nodes (which was a concern). In fact, the results were good enough (no real sign of EPE, all the cancer is contained in the prostate and my prostate is small to begin with) for my RO at MSK to say ADT was no longer necessary. So I seem to have dodged that bullet. We're now talking about HDR brachytherapy and SBRT (MSK Precise) alone, which is a much more appealing course of therapy to me. I may begin treatment in two weeks time. Thank you to everyone for their replies. I will share updates on my treatment as it progresses.
Hi, My situation almost mirrors yours. I'm 61 and in good health. Higher PSA of 9.5 but same Gleason score with EPE. Treatment by MSK is ADT/Brachy/SBRT 5 Days scheduled to begin in November. Presently taking Lupron, ( 2 shots of 3 months each) I'm 1 month in and not happy at all with side effects.
I've been looking into Proton Therapy at MSK as an alternative. No consult yet.
I decided to go with the HD Brachytherapy and 5 sessions of SBRT / MSK Precise. The brachytherapy went fine- I had it 5 weeks ago. I am now done with 3 of my 5 SBRT sessions. All has gone well. I’m going to post a separate summary of all this in a separate post.
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