Can’t decide course of treatment… help!
Hi everyone- I’m writing as support for my husband who was recently diagnosed with PC. So much info has been thrown at us yet at the same time it feels like this treatment decision is just up to us without much guidance. The “gray areas” are killing us.
My hubby’s info: 68 years old, very fit and active (runner, physical job lifting and being on his feet all day). PSA is 8.09. Gleason score is 3+4=7 and 7 of 12 of his biopsies were positive. Currently no ED issues.
Trying to decide between robotic prostatectomy and radiation. Would appreciate anyone (especially of similar age) willing to share their experience with either option or any advice on how you made the decision. Thanks so much!
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It definitely is a tough decision. Everyone who has chosen their preference for the most part support their direction which often will still leave you in doubt which direction to proceed.
I was Gleason 8( 4+4) and 70. As I contemplated my decision I was very scared of surgery and side effects including just the thought of a catheter for 10 days. I knew both surgery and radiation have side effects, and that some overlap such as incontinence and ED and others like rectal are tied to radiation. ED after surgery is right away, while it will come later during Radiation treatment or after treatment. Today versus years ago, leaps in technology have come to minimize side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects and focal Radiation procedures can also. Rectal issues actually scared me more than incontinence as I knew pads and diapers were available to mitigate leakage while incontinence improved if you incurred it. Nothing really was simple to improve rectal issues. It seemed that often hormone treatment went along with Radiation which added to additional side effects. All Radiation treatments are also not equal depending whether your husband’s cancer could be treated in those other ways. Their are focal treatments. I went back and forth weighing the pro’s and con’s of each.
I ended up choosing Surgery knowing that I would still have Radiation as a backup and approaching age 71 the window to receiving surgery was getting closer to close regardless as I approached 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery.Another reason I chose surgery was that while I was in surgery after the prostate was removed and the tissue was removed to check on margins, the tissue was going to be sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this based on the PET scan and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. Immediately upon my catheter coming out I was continent and have minimal ED side effects 5 months out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Anyways my thoughts on my direction I chose.
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@don0218 I am also newly diagnosed, with similarities and differences. My PSA is<2.0, but my father had prostate cancer, so I have always watched. I am 66 years old, good overall health, fairly active. My urologist found a nodule on my prostate, so ordered an MRI, which led to a biopsy. Found cancer in 7/15 cores, with an initial reading of 4+3 Gleason. I wanted a second opinion, so I went to Dana Farber in Boston. The radiologist read my biopsy slides differently, grading them as 3+3. This new lower reading reduced the urgency for me to choose a treatment, so I am on “active surveillance” with a confirmatory MRI and biopsy in July. You and your husband will learn that the doctors will recommend treatments, but ultimate decision is yours. Surgery and radiation have similar cure rate outcomes, so it usually comes down to quality of life issues and how to minimize incontinence and erection issues. Clearly, the doctors provide great insights and whether all options are possible. I suggest buying a book by Dr. Patrick Walsh called “Guide to Surviving Prostate Cancer,” as it is an excellent source of information that helps inform future treatment decisions. Stay tuned to this forum as it contains lots of great info!
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Also don’t hesitate to obtain second opinions and if you live by a university teaching school hospital they are often comprehensive cancer centers and consider seeking your treatment there. Also if you go the Surgery route be sure to find out how experienced your Surgeon is.
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don0218, I think I asked pretty much the same question when I had to make my decision. I was 67 with 4+3. PSA was 4.2, just slightly over the upper range for my age. Digital exam found nodule. MRI and biopsy, etc. Dragged on for months. The Walsh book mentioned by capecodder was a my source of info too. I was told that late 60s was kind of a breakpoint: younger, and surgery would be recommended; older, and radiation was preferred. And the likely outcome would be about the same. After back and forth I chose surgery, because I wanted the cancer out of my body ASAP, not just being attacked for 8 weeks. But radiation was a tempting option.
The surgery and recovery period were more stressful than I was prepared for. But I do not regret my choice. See, they dont really know what's going on in there until they get inside. Turns out my cancer was more aggressive than they had guessed. So, it's likely the outcome would not have been the same. Now I am still dealing with side effects, but as you might learn, there are a lot of side effects with radiation too. Both treatments will change your life. And with surgery, if it does reoccur, further treatment with radiation is still an option, less feasible the other way around.
Everyone's situation and cancer is different, so you can't just consider what worked for others. I can only suggest that you read as much as you can to have informed questions.
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I too am 68 and was scared to death of both RP and RT. I was told I was a good candidate for Focal Therapy which I chose but unfortunately it failed. RP and RT can fail as well. My cancer metastasized to my lymph nodes. I'm now on hormone (ADT) therapy and will be starting IMRT radiation for 8 weeks. You're probably already finding that the amount of information is daunting and you'll get differing opinions from both professionals and non professionals that make it very difficult to make a decision, but once made I found the stress level drops off quite a bit. There is no easy answer. The key is to educate yourselves as much as possible before deciding. AND, without doubt find the best doctors preferably at accredited high volume cancer center. Second opinions are a wise choice. Despite some horror stories, many men do pretty well with the available treatments. Even many of those with advanced cancers can survive for long periods and have a fairly normal life. I would specifically ask for a PSMA PET scan which is the best to indicate if any metastasis has occurred. It's becoming more rountine, but not all docs are quick to recommend them. It's an easy test. Anyhow, hang in there, your husband is not alone. PCRI - Prostate Cancer Research Institute is also a good resource for information. Dr. Mark Scholz videos are very informative. I recommend them highly.
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where is my story I hope it helps. I was 57 at the time. PSA was about the same7.8 And 3+4 but they sent it out for decipher testing and it came back i had cribiform Which is the aggressive type I was like you torn surgeons told me surgery radiologist told me radiation. I asked if cribiform could be radiation resistant they kept telling me no no no well I decided to go with radiation with a brakey therapy booster huge mistake after the second radiation treatment could not urinate. I had to take Flomax twice a day just to urinate from then on also messed up my bowel something terrible and they still are …the worst part about it is, your PSA slowly drops over the years you don’t know if it actually worked well with me my PSA drop down to 0.8 then it rose up to 1.8 and guess what the cancer was still there. It wasn’t a new tumor it was the same one, but this time it was 4+4. The two surgeons I consulted were convinced that the cancer I had is radiation resistant so you better find out if it is cribiform or not thankfully I was able to do salvage surgery and I had it removed. Everything went well and I am going on one year cancer free if I could do it all over again. I wouldn’t even thought about doing radiation. I would’ve just done the surgery. I had it done at UCLA. I wasn’t even on the table for two hours home the next day had a catheter in for a week that was about it. It wasn’t even that bad surgery. You hear a lot of horror stories don’t believe them, but I better find out About cribifrom if you look up the gold standard treatment for prostate cancer younwill read if you expect to live 10 years or more, and it contains prostrate 80% of men chose surgery then you have the back up plan if it happens to slowly come back again that is radiation. I don’t have that back up plan you can’t do radiation twice. I very very very regret doing radiation. Hope this helps. If there is no cribiform involved ghen radiation could and probably would work there are quite a few side effects that could happen. Unfortunately, they all did with me.
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What is the gold standard treatment for prostate cancer?Radical prostatectomy remains the gold-standard treatment for clinically localised prostate cancer. Cumulative data suggest that it has a survival advantage over radiotherapy, but it is troubled by surgical morbidity especially erectile dysfunction and incontinence. even after I had salvage surgery, which increases erectile dysfunction in incontinence five times I still have an erection no problem and the incontinence isn’t even that bad. Good luck.
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Hi,
I would look into the newer one incision Prostate removal being practiced by some surgeons. From what I understand it really cuts down on the two side effects or urine leakage and ED. I have included a link for you to study. I had surgery by the 5 incision method back in 2015 and do not regret it. If surgery fails you still have several options to deal with the returning cancer. In my opinion you need to have a few backup plans in case the initial one fails.
Dave 3+4
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Can you provide more information? Do you know what his risk category is? It should be from the list of Low, Favorable Intermediate, Unfavorable Intermediate, High, or Very High. Guidelines…
https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf
Sounds like it is Unfavorable Intermediate, but can you confirm? I say that, because with 7 of 12 samples positive, the cancer has to be on both sides.
Did he have an MRI? If so, did it show extraprostatic extension or other concerning signs? If he hasn't had one, he needs one.
What was his PSA value? Why did you see a urologist in the first place?
Answers will help us to refine recommendations.
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Thanks so much for taking the time to explain all of this…. it is extremely helpful. Especially about checking the margins. I will have to ask that question. Also going to see about finding a doctor who can perform the Puboprostatic Ligament sparing surgery. So glad you've had a positive outcome from your surgery!
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@centralPA we ended up at the urologist after a high PSA level from a yearly physical. His risk category is Favorable Intermediate. He has not had an MRI nor has the doctor suggested one. I am going to make sure he gets one. His PSA was 7.57 in October of 2024, went up to 8.09 in January.
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My understanding that if more than half of the cores are positive, it bumps you into Unfavorable Intermediate. See the NCCN guide below.
I would change urologists. It is a best practice that you get an MRI first, and use it to guide a biopsy. If you do an MRI after a biopsy, the biopsy scars can interfere with interpretation.
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Yes! Find another urologist or better yet an appointment with a urological oncologist at a major recognized cancer center. I drive about 45 minutes into NE Philadelphia which is a bit of a pain, but I'm by far happier with the professionalism I'm getting there when compared to my local doctors. I ditched my local urologist early on. You may be able to get some recommendations here if you indicate the area which you live. Don't get me wrong. There are good local docs but I believe the large educational institutions just have better resources and more experience due to higher volumes of patients. That said, even at the big institutions some docs are better than others. Do your homework before you make an appointment.
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The DaVinci single port Robotic system is fairly new so finding a Surgeon really skilled (meaning very experienced) using the newer system likely means searching at the Comprehensive cancer centers usually affiliated with the major teaching universities.
Another thing regarding the sparing of the Puboprostatic ligament. He is able to do this with his surgical technique. I don’t know just doing the single port necessary means that technique. He explained that during Surgery I am certainly not upside down but he will operate through the Davinci robotic system as if I were upside down during the surgery. In most multi port robotic laparoscopic prostatectomies he explained the Davinci robotic system is placed between the patient’s legs which are raised up. The Surgeon then makes three or four incisions adjacent or below the belly button. When he is using the DaVinci single port system he places it behind your head. You are laid out basically flat. He makes one incision above the belly button, and comes in from the opposite direction from where most Surgeons operate. He said many surgeons are not familiar in the use of this approach and this is how he is able to spare the ligament.
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