Hi everyone. I was recently diagnosed with non metastatic, but aggressive pc. My psa in March of this year was 8.2 and then 10.1 four months later, so rising quickly. Biopsy was done at end of August, which showed significant tumor development on the right side and a Gleason score of 4,5 or 5,4 in half of the cores taken. Then had a psma scan done which found no spread, which was the first good news I've had since I first started down this path. Needless to say, my family and I have been overwhelmed, and have had to learn a lot about this disease in a short period of time. I still don't feel like I really have a good grasp on all of the information and treatment options that are available.
My urologist is telling me that there are 2 options available to me: surgery (prostatectomy), or radiation. I've tried to do some research about both options, and realize that both have some pros and cons, but am not sure how to go about making a decision. Does anyone have any suggestions or information from their own experience that might help me figure out what the best treatment option is?
Thanks so much for any information anyone has.
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Quarky
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Hello, If I had a dollar for every person who says if you have surgery (prostatectomy) first you can always have radiation (brachytherapy) afterwards but salvage surgery after radiation is very difficult because the prostate is cooked…then I would be a wealthy man. The truth of the matter is that if brachytherapy is done right you don’t need surgery. Both options carry risks but in my humble opinion radiation is a little safer. The most important thing is having an experienced doctor. Stay away from the ones who have only done the procedure a half dozen times. Do your homework. Good luck!
Take into account that this forum is biased towards irradiation. To your query now, if you are younger than 70 prostatectomy no doubt. If you are over 80, irradiation without a second thought. If you are in your 70s, than flip a coin.
Thanks for the reply. Turning 70 in another month. Generally very healthy, but I've gone through several surgery's in the past few years (foot reconstruction, and hip replacement), so am not particularly keen on another surgery.
Four years ago, when I had RP, I was 69 years and 8 months old. It was my maiden surgery and in fact the first time I was admitted to any medical institution not as an outpatient.
My initial preference was for irradiation in the false hope that this would be the only treatment needed. One of the 4 urologists that I saw, the one that performed my biopsy, was honest enough to tell me that with my Gleason 4+4=8 there wasn't a chance that surgery alone would suffice. The other 3 urologists were promising the moon and the stars in a very abstract way. I think the proper Americanism for this is BSing. This made me search the matter extensively, finally ending up to my understanding that there was not any single treatment for my case. It's a pay as you go route and the more one has to spend the farther will take him IMO. RP bought me 2.5 years without any additional treatment. For the latest 22 months I am keeping my PSA low with a Minimum Effective Dosage (MED) of Bicalutamide kicking further down the road salvage irradiation. I document this whole thing in a thread entitled: "An engineer's Bicalutamide maneuvers".
My situation is similar to yours. Having a Gleason score of 4+5, or 5+4, is the key issue. This is considered advanced cancer even though your psma scan did not detect metastasis yet. SOC has demonstrated that the best chance for long term survival is, in fact, high dose brachytherapy boost along with whole pelvic irradiation and two years of ADT. This is the treatment I received.
Thanks for that. Can I ask you how you're doing now? I've read a little about brachytherapy but frankly didn't know anything about it until I joined the club. Was the process challenging, painful, and did it come with either short term or long term side effects? I assume you're continuing to monitor your psa annually too, if not more frequently.
But this was not a randomized clinical trial, which would be definitive. There is such a trial (SPCG -15) in Scandinavia, but it will take several years (Dec 2025) until we get any answers from it.
You should also be aware that salvage radiation (after prostatectomy) has much worse side effects than primary radiation. Our first inclination is just take the damned thing out! But the first panicked reaction may not be the best. You can treat an area outside of the prostate with radiation that surgery can't touch.
Here are the chances of "getting it all" with surgery (fill in the nomogram):
Recent advances in radiation (especially heavy doses to the prostate, whole pelvic treatment, boost doses to known prostate tumors, long-term adjuvant ADT, intensive hormone therapy, and genomic testing) have made it highly curative for high-risk patients. Look at these:
Thank you so much for all of this helpful information. There's a lot to digest, and I'll have to reread it all to really understand it. It sure does appear that the best approach for my specific situation would be BBT including ADT, which is what it sounds like Jancapper received.
Do you have any knowledge about MARS? I'm just wondering if there are any additional advantages to this approach.
I'm a bigger fan of HDR brachy boost than LDR brachy boost, which seems to be what MARS is. LDR-BBT is more irritating to the urethra and has worse late-term urinary side effects. Do you live in Houston?
I'm in N Calif and insured through Kaiser. So far, since I'm still at the beginning of this journey, I haven't yet talked to anyone other than the urologist that did my biopsy. He and I are supposed to be discussing surgery options next week, but I've also asked for a referral to a RO or MO. After hearing from you and several others on this forum I'm definitely leaning toward radiation, and really appreciate all of the helpful information I've already received.
An RO, not an MO, is definitely who you should be talking to. MOs treat metastatic or recurrent PCa with medicines. They know little or nothing (but, like your urologist, may have opinions anyway) about the use of radiation to kill cancer, and would only refer you to an RO anyway. You are getting advice to talk to an MO because you posted on an "advanced PC forum" and most men on this forum see an MO. You do not have advanced PCa, as far as you know. You have "high-risk" localized PCa.
IDK if N. California Kaiser offers the specialized therapies I discussed above. I know UCSF does. Joe Hsu is their guy for HDR Brachytherapy and anyone can add the external beam part of it. You may consider switching plans during open enrollment.
Very helpful! Thanks so much. Still learning about the various treatment options, specialists, and terminology. A lot to absorb but you and the others on this forum are an excellent resource.
Quarky, just throwing in here that Tall_Allen is top of the heap for resident experts here. You can trust his information. Good luck with your information-gathering and decision making. We're 11 months in, and it certainly is overwhelming at first. It gets better. This website is excellent.
Hey brother. First get more opinions and definitely at least 2 from a medical oncologist. Did your urologist mention androgen deprivation therapy? I don’t know your exact situation but I’d bet that there are a lot more options and combined therapies to explore.
First, don’t panic or rush into anything. Get lots of information and a second or third opinion. And don’t let anyone (including docs) steamroll you into doing something you are not comfortable with. It’s a big decision but it’s your decision. The worst advice I got was just find a doc you trust and listen to him. Docs have their own agenda and bias. There are different choices and no guarantees. But you don’t want to look back and wish you had made a different choice.
Second, here is my view. Tall Allen is right that the standard of care (soc) for Gleason 9 leans towards radiation + brachy seeds + at least 2 years ADT over surgery. Why? Because even if the scans don’t pick it up, there is a good chance that some cancer cells have escaped and if this is the case just removing the prostate won’t cure you. You likely need something systemic to deal with any escaped cancer cells.
However, people also take into account their relative views of side effects in addition to cure rates. Radiation + long term ADT can affect fatigue as well as potential bowel and urinary and CV. Surgery also has side effects including both the immediate surgery recovery and some chance of ED and urinary.
For what it’s worth, there is also door number 3 which is what I did. I had Gleason 9 like you with no indication of spread. I chose an experimental protocol at NIH of 6 months intensive ADT to provide systemic control of any escaped cancer cells followed by surgery to get rid of the motherload. 3 years later, no evidence of disease . Doesn’t mean I’m cured though. I still test every 6 months.
Thanks for your perspective and experience. Also glad to hear that you're doing well. After 3 years do you still have any side effects from either the ADT or surgery?
Very little. I was fully continent after 2 months. In fact, from a urinary perspective I am better than pre-surgery as before I was getting up at night about 3 times. But now I am either sleeping through the night or getting up once. Some increase in ED but it is manageable. Things take a little longer. I still get morning wood though a bit less frequently. On the positive side, orgasm is just as good with no mess. T came back about 6 months after surgery, so no brain fog or hot flashes. All in all, life is back to normal, though I need to test PSA every 6 months. Wishing you as good a journey as I have had.
Thank you. Yes, I plan on getting a referral to a medical oncologist and/or radiation oncologist. I'm not sure though which is preferable. I haven't yet talked to my urologist about the options. I'm a Kaiser patient in N Calif and have found that my Kaiser urologist, so far at least, has been somewhat limited in his communication to me. He performed the biopsy on me, and I have to say that it was a really painful experience. He worked very quickly, so I've wondered whether he didn't allow enough time for the anesthesia to kick in. Certainly don't want to experience that again!
Greetings Quarky, you've come to the right place for help and information. We all went through newbie basic training so don't fret and don't panic...... One day at a time and live, love and LAUGH....Keep posting on this site....(it's FREE)....
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