After having had my first physical in about 13 years, my PSA was 16.75! I’m 52. Repeat was 14 and biopsy was positive. This was early July. Most core samples were 3 + 3 (one with 40% volume) and one was 3 + 4, with 50% volume.
At first I was told I was Gleason 6, then given the volume, Gleason 7. According to NCCN guidelines, surgery or radiation. Urologist recommended either brachytherapy OR external beam and my choice on ADT.
Oncologist said nope...”you need ADT, brachytherapy AND external beam.” I was kind of PISSED at why there was such a discrepancy!
Chose to see a surgical urologist, and decided to go with prostatectomy....scheduled for September. Knowing my father had prostate cancer, I should’ve have had regular physical and screenings earlier (like at 40-45)! I’m stupid and I’m still feeling guilty about my stupidity. Sorry for the long post.
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RA9903
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Your Gleason score is 3+4 -- the highest score is what is used. Your PSA and Gleason score puts you in the intermediate risk range - curable by many treatments, including SBRT, HDR brachytherapy (monotherapy), LDR brachytherapy + external beam, and surgery all have about equal expected outcomes.
It is a good idea to get a second opinion from Epstein's lab at Johns Hopkins. They are the gold standard. The cost is $275. Just tell your urologist to send the slides to Epstein - it's a common practice.
Really bad idea, imho, to see a medical oncologist - MOs spoecialize in incurable PC, not what you've got. There are various radiation specialists you should be talking to. And there are probably other surgeons you should talk to. Where are you located? I might be able to suggest some doctors.
It's only been a month since your diagnose, and you should not be making any treatment decisions yet - slow it down! Take your time. PCa is slow growing at this stage. It's an important and irrevocable decision and there's a lot to learn and think about. You should also ask yourself these questions:
I thought the highest Gleason score is 10. Yes, I’m in the intermediate, “Unfavorable” risk category. I DO NOT want radiation. Usually, side effects from radiation occur few years down the road. With surgery, incontinence and ED occur early, but resolve in a few months. I saw a surgical urologist in Huntsville, AL.
I guess I can have them have my slides sent. But what are they gonna tell me different? I’m Intermediate, low risk and can be under surveillance? If so, I may be in this same boat in 2-3 years...I’d rather have surgery at a younger age then later.
I mean YOUR highest Gleason score is the only one that counts.
It is not true that "Usually, side effects from radiation occur few years down the road." Almost all side effects of radiation have already occurred within the first two years (although rarer "late term" side effects may re-occur later). It ialso is not true that incontinence and ED resolve in a few months. The source of your misinformation stems from the fact that you are getting it from a surgeon. You have to go visit specialists in other therapies. In this age of specialization, it is unrealistic to suppose that a surgeon knows much about anything other than the surgery he performs (although I've found that the lack of experiential knowledge usually doesn't stop anyone from having opinions about other specialties. You owe it to yourself to hear from others.
Here is the actual data on side effects that occurred in men who were randomly assigned to surgery, radiation, or active surveillance. It paints a very different story from what you've been led to believe:
As you can see for yourself, about 20% of men who had surgery had lasting incontinence (Table 1). For a 50-59 yo man with good erectile function, 43% had good erectile function two years later after nerve-sparing surgery (Table 5). You will also notice that urinary and rectal function returned to baseline within a year after radiation (Tables 2 & 3).
Your therapy depends on your diagnosis, so it is important to get it read correctly, if you can afford the $275. You have no idea what they will tell you. They may tell you it's better, worse, or the same. Biopsy slides are difficult to read correctly, and you don't want to get treated for the wrong thing.
Unfortunately, if you have to be treated in Huntsville, your choices are probably limited. UA Birmingham is one of the top tertiary care hospitals, and can probably provide you with more options and better specialists.
I'd like to add a bit to the excellent advice from Tall_Allen.
The first attempt to cure your cancer is the critical one. The best chance of a cure is during the first treatment. If the treatment fails and more treatment is needed, everything is more complicated and more difficult and, if the failure is not discovered quickly, the cancer may grow and become metastatic before a second try can be attempted. Therefore, you want the very best surgeon (or best radiation oncologist if you chose radiation) that you can get. He or she should be knowledgeable, highly experienced and deeply committed to his or her patients.
I was offered surgery by a urologist whom I later discovered was a specialist in female incontinence and only did about six prostatectomies per year. That's just not enough. I wouldn't want a dentist to fill a tooth who only did six teeth per year. He wasn't the right guy to do my surgery.
In addition to Tall_Allen's blog post on questions to ask yourself about treatment choice, he also has a good one on how to find a doctor. See: pcnrv.blogspot.com/2017/12/...
If you go to a major academic medical center, your test results will go to a tumor board made up of a surgeon, radiation oncologist, medical oncologist, and pathologist. They will discuss the case and issue a recommendation, so the recommendation won't be made solely by any of the above. I first visited a urologist at Hopkins who's removed thousands of prostates, but ultimately the tumor board recommended radiation and ADT. The board also presented me with a second option (surgery) but they rated that a distant second given my age and test results. So what I'm saying is that the recommendation in the best of settings shouldn't be biased by anyone's particular specialty. It's worth traveling to an academic center with a good reputation for treating this disease.
Thanks, Alan. I wish I knew then (just 18 months back) what you said : The best chance of a cure is during the first treatment and the rest. Brilliant stuff for newbies to PC.
Unfortunately, I now fall in the category of dying veterans who have failed every treatment thus far, after just 18 months. If only I knew then what I now know
Still life is not too bad and I plan on enjoying myself till I kick the bucket
With prostate cancer, we usually can't tell if the treatment we had was the best or if the doctor made mistakes. Even the best doctors don't have a 100% cure rate. If even tiny amounts of cancer have established themselves outside the treatment area, amounts too small to detect with any current imaging methods, then the treatment will very likely fail to cure the patient and there was nothing the doctor could have done to discover the problem or to prevent the metastasis. So please don't beat yourself up too much about not getting the best doctor. It's very possible that even the best doctor wouldn't have been able to prevent your recurrence.
We don't know how much time you have left. It's not impossible that one of the new treatments like Lu-177-PSMA will work for you, or that you'll survive long enough for some great new treatment to appear. But whether it does or not, I admire your determination to keep enjoying yourself. I'm going to try to do the same.
Everyone is different. There could be an oncologic benefit for some if treated with surgery and for other if treated with radiotherapy. It takes more than a month to decide which treatment is best for you. You only have one chance to make the right decision for you.
You haven't stated if MRI indicated extracapsular extension, suspicious nodes, seminal vesicles, bladder involvement etc. which might make the MO sound a little less off the reservation. And don't blame yourself for not screening years earlier than any of the general guidelines would have advised you--focus on getting well.
So then, kinda off the reservation. My situation was similar--biggest difference is I'm 15 years older than you. I think you've gotten good advice here.
you must keep me informed on your journey and what the pathologists find after you have the prostectomy. ONce they prostate is out, they pathologists are able to determine exactly the extent and virility of the cancer
I seldom give advice. But this time, I will. SLOW down. Make an informed decision cuz whatever you choose WILL be life changing. Get second opinions. Learn as much as you can before you choose a treatment. Btw, AS, then, external beam, brachyboost, and ADT here. Worst was/is ADT.
Good luck.
Edinbaltimore
You don't mention bone or CT scans. You need those to find out if the disease has escaped the prostate. Gleason 7 isn't such a dire diagnosis. In addition to treatment options already mentioned you could look into HIFU -- it is a minimally invasive procedure that offers minimal quality of life impacts. Google it. No need to rush into things before you've brought yourself up to speed on the different options available. This disease does burden the patient with making treatment choices. Remember that those doctors you see are going to recommend treatments they have experience and skill with and are therefore biased.
I did have a bone scan and MRI and both were negative for mets...I’m Gleason 7 but because of volume of two core samples (40% on a 3+3 and 50% on a 3+4) I’m in the intermediate, Unfavorable category. I decided on a robotic prostatectomy...surgeon I saw is very experienced. Thanks very much!!!
I re-read your original post and figured that you had not asked for any advice but merely informed this board of your predicament and your decision (robotic surgery).
You have also found a surgeon who, in your view, is very experienced. If the surgeon does a good job, you could be completely cured.
That’s ok about the advice...I fully expected getting different type responses and that’s great! I appreciate ALL of them! I’m actually a physician and have learned a lot being on the patient side of things!
One thing I think the medical community needs to do more is talk about dietary styles that can lead to, prevent and even reverse early cancers.
There’s some research about plant based diets and prostate cancer. My wife and I have actually converted totally to vegans based on this research. I hope and pray that it will make a difference prior to and after surgery.
We are here to support and learn from each other. There’s so much lack of clarity when it comes to screening for prostate cancer, and not much awareness. I’d like to help change that.
Good afternoon- just wanted to chime in on your post. My biopsy took place 2 yrs ago this October. I had similar biopsy results as you if not a little worse. T3b was the official classification. I had the Divincy robotic surgery but was able to spare some but not all nerves. My tumor had progressed outside the gland. After surgery I had 6 weeks of adujuct radiation. It's literally 10 minutes each session. I had my radiation treatments during my lunch break at work as the facility was just a few minutes away. I was also put on lupron for 6 months. Two 3 month shots. The lupron is an energy suck but you'll get back up to speed a couple of months after the ADT finishes up. My doctor went for a 6 month ADT session. He said we would start ADT again if my PCA starts to rise. So I'm now at a little less than 1 yr post treatment and continue to have an undetectable PSA. Working and pretty much back to normal.
Just wanted to let you know how things played out for me since we are somewhat similar. Tall Allen and the rest of this group are invaluable as you go through your journey. All the best and good luck
Thanks for sharing your treatments! I’m glad you’re doing well and back to normal!If you don’t mind, I’d like to ask a few difficult questions. One of the reasons I didn’t want ADT and radiation, was because of the incontinence and ED. From what I understand, and from what my doc who’s doing the surgery, the radiation is better tolerated and has less side effects. Has that been your experience? How about the ADT; did you have night sweats or mood swings?
My wife and I have instituted a vegan diet based on some research. Hoping that this will help in treatment. Thanks again!
Assuming your nerves are spared, the ADT (and the general malaise associated with having cancer of the junk) will reduce your libido alot but with Viagra or injections you can regain functionality. I have to use injections as the pills don't completely work for me.
On that note, make sure you have the Divincy surgery to have the quickest recovery and best chance to keep the nerves in tact. Your surgeon should have performed at least 1000 or more surgeries using the surgical device. If not seek a surgeon who has. If you don't have anyone in Huntsville with that much experience with the Divincy head on up to Nashville. This should be non negotiable.
As far as incontinence you should be getting progressively better after about 2 months after surgery. I had some leaking if I twisted in a chair or some other odd position say 3 months out but I am completely normal with now. I'm swimming 3 days a week and hitting the weight bench (180 lbs)3 days. No problems.
One more thing- diet is definitely important. I got fat as hell with the surgery/lupron and laying around feeling sorry for myself. Watch out for sugar. Studies have shown that sugar feeds Prostate cancer and it is best to go sugar free.
This is not the first time someone has said slow down. I may not have mentioned, but I’ve had scans,which were negative. So, according to NCCN guidelines, (for Gleason 7 unfavorable risk) it’s either radiation with/without ADT or surgery. Yeah, there’s proton therapy, but most insurances don’t cover. Radiation (pellets with external beam) do NOT interest me. (and BTW, peter can be petered out with this treatment also).
Plus, once you have radiation, you have bought the farm.
We’ve studied. Surgery is our option because if needed, radiation should be better tolerated. Don’t know what else there is to think about. As far as peter, I hope thing work out...but my main concern is getting better. 👍🏽
I've read and reread your post and all replies. The members in this forum are smart, supportive and amazing! (especially Tall_Allen,what distant planet did he come from?)
You mention that both your urologist and oncologist recommended different types of radiation. I fail to see the discrepancy.
After my urologist (and friend) gave me the bad news,"AJ you have a sack full of cancer", he immediately referred me to a local hospital oncologist and never recommended any type of treatment.
The hospital RO recommended 45 days of EBT. However, I knew that I needed a 2nd opinion. On to Sloan Kettering. I had studied similar cases and felt that I needed what I call "the 3 prong" approach. Met with MSK Dr. Shasha and (to my surprise) he agreed. I had studied RP and after thoughtful consideration, decided that it was too "radical" for me.
Below is a reply that I made to another post a few days ago. Basically, a chronology of my past year.
"Hmm... I started ADT 9/01/18. HDR Brachy was April 26th and IMRT, 25 days June 1st. I've been on ADT continuously (Casodex and Lupron until March 1st, then Zytiga and Lupron since).
Absolutely no side effects (except for libido loss,etc). My overall blood work is better than it was 6 years ago. Especially my liver enzymes. They were elevated when I started Zytiga and dropped fast (all within the normal range) within 2 months and I drink more than I should daily. However, I do eat a sensible diet and have actually lost 6 pounds in the past year (only due to diet modification, no desserts).
My MSK MO ordered a bi-weekly CMP (close to perfect) and monthly PSA (steady @ 0.014).
I am active. I walk a lot and do daily push ups.
Bottom line: I feel great! Last month I mentioned to my wife,"If I didn't know that I have cancer, I wouldn't know that I did". The only reminder is that I will be on ADT for the next 22 months! In December, I'll try to forget that its my 71st birthday.
Also, original dx was G9, stage 3 and high PSA was 28. No mets (Go Yanks!).
Basically, my main point was that my urologist didn't offer any opinion regarding treatment, while yours did. He left treatment options to the oncologists. Since dx I only see my urologist for my quarterly Lupron injection.
The rest of my reply, was only my experience with radiation and ADT.
Ok, thanks. I understood that you feel like there were no contradictions between the two specialists. But the urologist said that the pellets (brachytherapy) stop giving off radiation after a time and that ADT would be my choice. Oncologist said that although the radiation given off by the pellets decrease, they never really stop. That IS a contradiction. Furthermore, oncologist said I absolutely need ADT to decrease size of prostate. That’s also a contradiction. Oncologist went on further to recommend surgery.
"In high-dose-rate (HDR) brachytherapy, we deliver concentrated bursts of radiation in a short amount of time. After putting you under anesthesia, we insert a number of plastic catheters (tubes) into or near the tumor in your prostate. The catheters are attached to a machine that contains precise doses of radiation in the form of radioactive pellets. The pellets are released into the catheters for one or two 15-minute sessions, delivering radiation directly to the tumor.
After the final treatment, the catheters are removed and you can return home."
Here is the link to the Sloan Kettering PC website. It was invaluable in helping me make my decision.
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