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Posted 4/15/2021 11:06 PM (GMT 0)
First, let me say that I am very thankful that I found this forum. It has been helpful and encouraging to read other people's journeys in dealing with prostate cancer. I am 52 years old. I got my PSA checked at a wellness check in January. My PSA came back 5.9. After being referred to a urologist, he recommended I have a prostate biopsy. My father died of cancer and since I believe it originated in his prostate (that's what the death certificate said), I certainly didn't argue with this recommendation. To my shock/surprise, it came back positive for cancer. 1 biopsy came back with a Gleason grade of 6 (3+3) and the other 2 came back with grades of 7 (3+4). All positive results were on the right side of the prostate. So, based on my research, my clinical stage is T1c and I am in the intermediate risk group. I have spoken to a surgeon and a radiation oncologist (today). It appears that I am a candidate for surgery, IMRT, and seed therapy/brachytherapy. To my surprise, they both told me that all 3 were essentially the same with regards to my probability for success. I should have asked exactly what that meant, but in my mind it meant success of removing the cancer or probability of reoccurrence. My brain thought that removing the prostate would achieve the highest success rate, but according to them not the case. I should say that my urologist strongly suggested I have my prostate removed (I assume this is because of my age). I am torn on which way to proceed. I have done alot of research on brachytherapy and feel like that may be the best option for me. But, the oncologist did tell me today that most guys my age elect for the surgery, but said he wasn't sure why this was case. All things being equal (haven't done enough research to verify this in my mind), I feel like I should select the course of treatment that is less invasive, has less recovery time, and won't impact other aspects of my life right away (incontinence and impotency). So, I guess I am leaning toward the seed therapy (mainly because my work schedule dictates that it would be hard for me to make 43 straight Monday-Friday radiation appointments). Any thoughts would be greatly appreciated. Thank you.
Posted 4/16/2021 12:08 AM (GMT 0)
NolaKevin, welcome to our club. You're asking the right questions---

So, once you climb off the ledge of "OMG I've got Cancer!", here are some things to do:

First, you don't have to decide today. Soon, but not today. You have a little time to digest and make a plan.
Second, ask your urologist to have your slides sent to Johns Hopkins for a second opinion. They are the best in the world at prostate slides. about 1/3 of the time, they will change your Gleason scores. Which may affect your choices.

After that, here are some thoughts...

Assuming the CT/Bone Scans/MRI don't show anything outside of the prostate--they say you are organ confined--then your RO is right: all of the basic primary treatments have roughly equal efficacy for cancer control. The decision, then comes down to your assessment of the various risks, and your tolerance for them.

It's also not a surprise that your Urologist suggested surgery--he's a surgeon, that's what he does. Good for you for consulting an RO--that's what HE does.

Your decision comes down to, then, some of the following questions:
1. Do you have a deep need to KNOW your true pathology?
2. Are you willing to wait some time--months at least, if not a year or more to KNOW the cancer is gone?
3. Surgery has well known risks of dramatic effects on continence and erectile function. It's not guaranteed--far from it....but the risk is there and it's real. How do you feel about that possibility?
4. You're pretty young. Radiation has the risk of unknown side effects possibly showing up 15-20-25 years from now. How big is that risk--it's hard to say, but it is there. How do you feel about that?
5. Practical questions: How much time are you willing to take for treatment? Surgery is a day or two in the hospital, a week at home with a catheter, and several months of gradual recovery of strength and energy. "seed" therapy is a couple of outpatient trips to the hospital, then monitoring thereafter. External beam is 40 or more visits, daily or every other day, for a few minutes each. Etc. How do the options fit with the rest of your life, including travel time, etc?

We're here to share our experience with you...and to share what worked and what didn't. You'll get through it.
Posted 4/16/2021 12:14 AM (GMT 0)
"I should say that my urologist strongly suggested I have my prostate removed (I assume this is because of my age)"

no, he recommended surgery because he is a surgeon and that's what they do.
Posted 4/16/2021 12:16 AM (GMT 0)
Halbert, thank you for the response and information. The doctor told me I needed to wait 6 weeks post biopsy to get my mri so that won’t be for another several weeks. I think I am going to wait until after that to make a final decision.
Posted 4/16/2021 12:18 AM (GMT 0)
F8, I did appreciate the fact the he was frank and told me he doesn’t do the robotic surgery so he recommended one who has done hundreds of them. But, I suspect you are correct.
Posted 4/16/2021 12:43 AM (GMT 0)
NK...Welcome and we too are glad you found us. It’s a great place to learn and ask the questions you’re asking. One of the challenges with this disease is finding the treatment option best for each individual’s situation. Initially it can be a bit overwhelming. I’m glad you’re keeping your options open. You may find the graphs on treatment success on prostatecancerfree interesting and helpful. The data there is a little dated; but, still helpful.

Another radiation treatment option is SBRT. It only involves five treatments usually on an every other day basis. I chose this option because it offered success rates of 95% for low and intermediate guys. The side effects are mostly very short term.

Prostate cancer is typically diagnosed by urologists. It’s my opinion that if radiation oncologists made the diagnosis more guys would be selecting radiation for treatment. I’m sure my good results have created a personal bias; but, I believe the data suggests that my situation s pretty much the norm.

Keep learning, keep asking questions and keep us posted. Terry
Posted 4/16/2021 12:47 AM (GMT 0)
Hello, Nola and welcome. Sorry you have to be here but we are glad you found us and we will help any way you can. My friend Halbert ( a surgery patient) gave you pretty much the same advice that I (a radiation patient) would give you so I won’t repeat it. Your scans are likely to show nothing based on you PSA and Gleason score so don’t fret much about those...they will most likely just be a baseline.

I chose seeds for reasons similar to the ones you listed. It’s a relatively easy procedure and I was back playing tennis in a couple of days. I did not have a stop g need to have the exact final Gleason Or to “get it out”. Rather I was concerned about ED and incontinence issue that might arise from surgery so for me radiation was the way to go. I’m happy to say that 12+ years later I’m still delighted with my choice. If you want to read my long winded story feel free to copy and paste from my signature.

BTW, there are a couple of other types of radiation yo. Ishtar consider, HDR brachy and SBRT. There are many men on this site who chose those so if you are interested in their detail just ask.

Good luck and stick with us. We will help you work thru this.

Jim
Posted 4/16/2021 1:15 AM (GMT 0)

NolaKevin said...
F8, I did appreciate the fact the he was frank and told me he doesn’t do the robotic surgery so he recommended one who has done hundreds of them. But, I suspect you are correct.

my uro didnt do robotic either but his partner did, but my uro recommended against surgery. and that is rare
Posted 4/16/2021 12:52 PM (GMT 0)
Thank you all for your input and feedback. I’ve gone back and forth on how to proceed. It is interesting that everyone who responded elected a different course of treatment and all seem happy with their choices. Also, interestingly enough, most folks close to me think I should just get the surgery. I will make the best decision for me. Again, thank you all.
Posted 4/16/2021 3:31 PM (GMT 0)
Kevin,

Here's the thing: Most of us are happy with our outcomes (and not everyone has HAD a good one) because we came in here, learned that doing the research and making a truly informed decision was a good idea...and then it's easier to be at peace with it.

The guys with the most treatment regret are those who went from diagnosis to "what the doctor ordered" for treatment in a few days or weeks and found out later that there were other alternatives available.

So, in a bit you'll make your decision, you'll find "your treatment team", and you'll get on with it. We'd be glad to have you hang out afterwards too--to share your insight with the next newbie.
Posted 4/16/2021 5:49 PM (GMT 0)
Come on Lolo's...why do I have to do all the "dirty" work...tell Kevin about making a signature...And Kevin...do not speculate on this and that...do not listen to prostate healthy friends who know less than you...do not make the medico's your friend...they are your doctors...when you want to know something...and someone..,even doctors say I don't know and then go on to blab something...anything...fegid about it...Folks who don't know...can not stand to admit they do not know so they say some of the stupidest things...watch any game show on TV...and watch their body language and their facial expressions...do not fear your gut...its usually correct....You said BT and...not that it matters...that would be my advice as well...good luck...welcome and yada...yada...blah...blah...logo...the village buffoon...and dang proud of it the more I see and hear the peers of eyes and ears faulter about my landscape...
Posted 4/16/2021 5:55 PM (GMT 0)
Nolakevin. Sorry you’re here. Like yourself I was a fairly young 59 when I got diagnosed last year in April. It is a shock that’s for sure. I was a Gleason 7 (4+3) at diagnosis but ended up a 3+4 once it was removed. I did decide to have it removed robotically. Went smoothly except for the day after surgery part of the anesthesia settled in my right shoulder. It only lasted for a few minutes but it was very painful. It went away quickly. The catheter was an inconvenience but I think about it every time I get up to pee in the middle of the night now. Not as bad as I thought and it came out easily. My dr said if I did radiation first it makes it more difficult to remove later which is why I went that route. Drink plenty of water while catheter is in and removal should be a piece of cake. I wore a pad for about 2 weeks then haven’t worn one since. Occasional dribble but no biggie. Erections came back in less than a month with no medication. Had 37 doses of radiation from nov- Jan. From the time I left house to the time I returned was just a little over an hour and I was about 15-20 mins away from hospital where I had it. The radiation people were on schedule every day but 1. Prostate guys kinda get preferred treatment because they want you to have a full bladder and empty bowels. That was a bit tricky. My last treatment was Jan 6th of this year. Having issues with ED from that still but a pill makes it good. I am hoping they come back soonish without the pill and think they will but they just haven’t yet. The pills are a bit of an inconvenience because you have to plan ahead instead of just being ready to go in an instant. My wife is very understanding. So far that is the only side effect I’ve had from radiation.

Good luck. Hope this helps.
Posted 4/16/2021 6:14 PM (GMT 0)
To clarify. Doing radiation first makes it more difficult to remove the prostate later not the catheter. Sorry bout that.
Posted 4/16/2021 6:25 PM (GMT 0)

Olmanhunk said...
To clarify. Doing radiation first makes it more difficult to remove the prostate later not the catheter. Sorry bout that.

While that is literally true it is also once of the misleading statements that some urologists will say to get a patient to choose surgery. It is “misleading “ by omission. What is omitted is the fact that there are equally good salvage treatments after a failed radiation as there as after a failed surgery. In other words, there are backup plans for both possibilities.

BTW, Nola, people around me also were encouraging surgery at first. I think it’s just an easy conclusion to “get it out”. But after my research the approach for me was to “get it cured”...and with the least amount of side effects.

In any case, make sure you visit docs in several specialties so that you feel well prepared to. Are one of the most important decisions of your life.

Jim
Posted 4/16/2021 7:00 PM (GMT 0)
I think that one statement "Radiation makes future surgery impossible" is one we've all heard, and it is mostly true: removing a radiated prostate is a very difficult surgery. However, it suggests something that isn't true--and worse, it assumes that primary radiation will fail to fully treat the cancer.

We've seen this in the last few days from another member, who had 'triple play', and his urologist is almost saying that his treatment failed because his PSA did not go non-detectable. Sigh.

Kevin: It was mentioned to create a signature: Go to your profile (click on your name next to a post), and there is a tab there for a signature file. There are limits to how much you can put in, but the basics: age at diagnosis, Gleason scores, # of hot cores for now. Later, your treatment choice and outcome can fit in.
Posted 4/16/2021 8:05 PM (GMT 0)
All,
Thank you for the continued feedback and encouragement. I am truly struggling with this decision, but don't want to wait too long before making a final decision. I will post accordingly. And thank you for the assist on the signature. It has been updated.
Posted 4/16/2021 8:52 PM (GMT 0)
***I should say that my urologist strongly suggested I have my prostate removed***

***Doing radiation first makes it more difficult to remove the prostate later***

Nolakevin, the above statements are classic urologist salesmanship that so many of us here have experienced. It's almost laughable whenever I see it now, but of course the stakes are too high to be laughing.

***Also, interestingly enough, most folks close to me think I should just get the surgery.***

This is a common reaction from people close to patients. I think it's because radiation is mysterious for most folks. Everyone can identify with cutting out and discarding the diseased tissue. There seems to be less understanding for the effectiveness of killing the tissue with a radiation beam. Prostate removal isn't simple -- there's a lot going on down there with getting all the cancer, while not screwing up important bodily functions.

Seems like you're learning towards one of the many radiation treatment options. I think that's a very good path to follow.
Posted 4/16/2021 9:04 PM (GMT 0)
Mattam,
Thank you for the response. I do agree about folks not understanding all that is involved with a radical prostatectomy or radiation. I truly think the mentality is that if you remove the prostate then how could it come back. Of course, we know that isn’t the case. I am leaning toward radiation but haven’t made a final decision. I was thinking of calling my urologist to discuss further but haven’t done so yet. I am pretty sure I know what he is going to say. I just hope he respects my decision at the end of the day.
Posted 4/16/2021 9:09 PM (GMT 0)
Kevin, It certainly would make things simpler if removing the prostate eliminated the cancer. Unfortunately for intermediate risk guys surgery as a monotherapy has approximately a 70% chance of avoiding followup therapy (prostatecancerfree). The rest will most likely rely on ADT and/or radiation to control or cure the cancer. For guys with BPH and urinary issues along with cancer; surgery maybe a good choice. Although we all may place ‘a cure’ first in our consideration of treatment the value we place on side effects can be very different for each of us. A younger man with an active sex life would typically place a higher value on sexual function than an older man who may have lost his spouse or medically has entirely different values when considering sexual function. It’s good that you have a little time to evaluate your options. An informed decision is always best. No matter what choice best fits your situation I always recommend seeking out the very best practitioner and team for that treatment.
Posted 4/16/2021 9:15 PM (GMT 0)
Kevin,
Another heartfelt welcome from me. Truly, the club no guy wants to join, but here we all be.

I was about your age when I got the news 16 or so months ago, and I understand the strong desire to make this decision and move forward. But I'd recommend taking enough time to get as smart on all this as you can, so that you can feel truly comfortable and informed with whatever decision you make. To that end, I would repeat the recommendation to consider getting a second read on your pathology from Johns Hopkins, and would also recommend some other educational resources if you haven't come across them already. For books, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer and Mark Scholz's The Key to Prostate Cancer are both very good. You'll also find Dr. Scholz online with his PCRI resources (e.g., Youtube videos). PCF is another good organization/ resource you'll find online. I played around with the nomograms at Memorial Sloan Kettering as well.

Surgery was the path I followed last year, even though I initially was inclined toward the triple play of seeds, EBRT and ADT. I ultimately decided that there was enough reason in my case to think that the nasties might still be inside the barn, so surgery made sense -- but I did my best to make sure I felt comfortable with that call, regardless of what the outcome turned out to be. Good luck, with making YOUR decision. O

Cheers
Posted 4/16/2021 10:20 PM (GMT 0)
The two things that I mention here when guys are deciding...

1) Once an area is radiated, if you need to radiate it again for other reasons, things can get complicated. For example if you get another type of cancer in 10 years in the same vicinity your treatment choices may then be constrained.

2) If they pull your renegade prostate, and likely some nearby lymph nodes, out....they can give you a really good pathology of the cancer....and that tissue can be used for genomic analysis now, and maybe years from now, as targeted treatments become more commonplace.

Good luck eliminating the critters.
Posted 4/16/2021 10:38 PM (GMT 0)
I ordered Dr. Walsh’s book from Amazon and am waiting for it to show up. I have 2 sons, both in their 20s. My urologist mentioned the gene analysis and, obviously, if I can do anything to help them out down the road, I am going to do that. I had forgotten about that when looking at the radiation. I’m not smart enough yet to know if it can be done without removing the prostate but I suspect the answer is no. If it is, that alone may sway my decision to surgery. Maybe it’s not that simple. I will do more research.
Posted 4/16/2021 10:53 PM (GMT 0)

halbert said...
I think that one statement "Radiation makes future surgery impossible" is one we've all heard, and it is mostly true: removing a radiated prostate is a very difficult surgery. However, it suggests something that isn't true--and worse, it assumes that primary radiation will fail to fully treat the cancer.

We've seen this in the last few days from another member, who had 'triple play', and his urologist is almost saying that his treatment failed because his PSA did not go non-detectable. Sigh.

Kevin: It was mentioned to create a signature: Go to your profile (click on your name next to a post), and there is a tab there for a signature file. There are limits to how much you can put in, but the basics: age at diagnosis, Gleason scores, # of hot cores for now. Later, your treatment choice and outcome can fit in.

it's a scare tactic. the urologist is your first point of contact and he wants to operate. he knows your are overcome with fear and you are are malleable. he knows most men "just want it out"
Posted 4/16/2021 10:57 PM (GMT 0)

NolaKevin said...
I ordered Dr. Walsh’s book from Amazon and am waiting for it to show up. I have 2 sons, both in their 20s. My urologist mentioned the gene analysis and, obviously, if I can do anything to help them out down the road, I am going to do that. I had forgotten about that when looking at the radiation. I’m not smart enough yet to know if it can be done without removing the prostate but I suspect the answer is no. If it is, that alone may sway my decision to surgery. Maybe it’s not that simple. I will do more research.

i'll make it simple. you have family history. your sons are at risk and need to be PSA tested annually beginning no later that 40 years old.
Posted 4/16/2021 11:01 PM (GMT 0)
F8, that makes sense to me. So, the gene analysis almost seems unnecessary.
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