I recently received a prostate cancer diagnosis and would values anyone’s feedback, experiences, or advice. I’m 53 and otherwise healthy. My biopsies showed various degrees of malignancy ranging from only one core at 3+4 , 2 at 3+3, and several just atypical. mpMRI did not show any evidence of spread. Considering my age and hopeful longevity, I’m planning for the surgery (robotic prostatectomy) in another 6 weeks or so. I’ve not spoken with an oncologist. I believe radiation (seeds or external) would be an inferior choice since I’ve been told if the cancer were to return, then surgery is no longer an option and radiation options would be limited. My surgeon said that the surgery would be nerve sparring since the cancer appears fairly well localized at this time. Obviously concerned about the incontinence snd ED but prioritize getting rid of the cancer completely. Any feedback would be appreciated!
Thanks!
Tony
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TonyTx
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I'll try to tackle the many common myths you've been told. But first, I recommend that you get a second opinion from Epstein's lab at Johns Hopkins. Depending on their reading (they are the gold standard), you may still be a candidate for active surveillance:
(1) "Considering my age and hopeful longevity, I’m planning for the surgery (robotic prostatectomy)" It is precisely for those reasons that you should also consider alternatives. You will never be at an age where potency and continence are more important to you. If you were elderly and impotent and leaking anyway, it might not matter as much. But you are still in your prime years. I've even heard ROs say this, and I'm shocked everytime I hear it.
(2) "I’ve not spoken with an oncologist." You owe it to yourself to talk to a radiation oncologist (RO or radonc), not an oncologist. I spoke to 6 before I decided.
(3) " I believe radiation (seeds or external) would be an inferior choice since I’ve been told if the cancer were to return, then surgery is no longer an option and radiation options would be limited. " While it's certainly true that salvage surgery is a poor choice after radiation failure, salvage radiation after radiation failure has better odds of success than SRT after prostatectomy. Radiation kills cancer outside of the capsule that surgery can't touch.
More importantly, radiation succeeds in about 97% of cases like yours, and most of the remainder is from occult distant failure, not local.
(4) "My surgeon said that the surgery would be nerve sparing since the cancer appears fairly well localized at this time. " "Nerve sparing" is a matter of degree, and even when there is full nerve sparing, only 35% of previously potent men retain potency, and even when they do, it is seldom of the same quality. Make sure there is a pathologist standing by to look at frozen sections. Surgeons who say they can tell without a pathologist are lying.
(5) "Obviously concerned about the incontinence snd ED but prioritize getting rid of the cancer completely." Results for favorable intermediate risk are the same for surgery and radiation.
(6) " surgery (robotic prostatectomy) in another 6 weeks or so" You are rushing into this and not doing your due diligence - you deserve better. And there is no need to rish. I waited 9 months between diagnosis and treatment. Anxiety gets in the way of good decision-jmaking.
There is NO "if the cancer were to return" only "how long before it returns". Five years is dubbed as "cure", but if you follow this forum you can read about cases that cancer returned after 9 years or even more. This forum is biased towards irradiation. But if you ask it's proponents about late toxicities and second cancers you will only get generalized answers of the form of "rare to very rare". You won't get any figures so you can assess odds by yourself.
Hi Tony. As usual Tall Allen is spot on. Please take your time, do your homework and make an evidence based decision. Here's a few lessons I've learned from my journey.
DON’T RUSH: It is natural to want all the answers right away. However, prostate cancer is generally slow growing and you have time to do the research and make the right decision for you. The worst time to make a decision is right after you learn you have prostate cancer when you are most vulnerable and least informed. Don’t be pressured to make snap treatment decisions, especially if you have a Gleason 6 biopsy result.
GET A SECOND OPINION ON YOUR BIOPSY AND TREATMENT OPTIONS: Reading a biopsy slide is subjective and lab expertise varies. Get a second opinion for your biopsy results from a comprehensive cancer center. Also, get a second opinion for your treatment options should you need definitive treatment.
ACTIVE SURVEILLANCE IF YOU CAN: Most local urologists will recommend surgery right away because they are surgeons, that is what they are familiar with and frankly how they make money. If you have a Gleason 6 (or some cases of Gleason 3+4), Active Surveillance is often the best course. If you and your doctor monitor your disease, do regular PSA tests and occasional MRIs and biopsies, you may be able to avoid or postpone definitive treatment (surgery or radiation). Your quality of life will be far better if you can avoid the side effects of surgery or radiation until you absolutely need definitive treatment.
TRANSPERINEAL BIOPSY: My first biopsy was done by my local urologist who used a transrectal approach with only local anesthesia. In other words, I was awake and it hurt like hell. Don’t do that!!! Transperineal biopsies have far less risk of infection and they are usually conducted while you are asleep. Trust me on this one. You want to be asleep and you don’t want to risk infection.
TALK ABOUT IT: At first I wanted my diagnosis to be a secret because I was scared and embarrassed. As time went on, I learned to share my situation more openly. You will be surprised by the support you get and how many people share your experience. Plus, talking about it will make you feel less lonely.
DO YOUR HOMEWORK: There are so many great resources to learn about prostate cancer and your options. Get informed by digging in and do your homework. Malecare/Healthunlocked, Prostate Cancer News, PCRI, and NCCN are all excellent places to learn and meet people like you. I’ve learned as much as I could about my cancer and I am richer and more confident due to people like Tall Allen. Take advantage of those who are willing to listen and share their experiences.
TAKE OWNERSHIP OF YOUR DECISIONS: Many men just want the doc to decide. However, it’s your body and your life and only you know your priorities. Don’t outsource such important decisions about your life. Be involved and take ownership of your path.
USE EVIDENCE BASED DECISION MAKING: There is great upside to going online and learning about prostate cancer. However, remember to use judgment and don’t accept every opinion as fact. Be discerning and use evidence based decision making based on credible randomized clinical trials.
Slow down a lil if you can. No need to rush into a decision right away. You've already gotten some good advice on here, but there's nothing better than doing your own research. My situation and age are very close to yours. You will find on this site that they are very pro radiation, anti surgery. I have spoken with several others who have had either RT or Surgery and they both were happy with their choices. So it comes down to your research and comfort level. There's gonna be side effects no matter what you choose. I'd definitely talk to a radiation oncologist and a medical oncologist. By your screen name I'm assuming you're in Texas. If so I'd visit the MD Anderson Cancer Center. They are a NCCN member and were just ranked #1 cancer center by newsweek, if that means anything.
I've read several good books that have helped:
Invasion of the Prostate Snactchers by Mark Scholz
The Key to Prostate Cancer by Mark Scholz
Guide to Surviving Prostate Cancer by Patrick Walsh
Saving your Sex Life by John Mulhall
I'd also visit PCRI.org lots of good info from actual Doctors.
I was in a similar situation as you about five years ago. I had three of twelve cores of 3+4 on my biopsy but a relatively small amount of gleason 4. I had a very large prostate which is not a good thing for radiation. I chose RP after visiting 8-9 Doctors, attending many support groups, reading books, etc. I "interviewed" four Urologists who had performed many thousands of prostatectomies. I chose the one I felt was best and had a very good outcome.
Tony, I'm just concerned that you are rushing into your decision. You only have one core of 3+4 so IMO time is on your side. You owe it to yourself to look deeply into radiation. I never really considered a focal treatment. If you eventually choose surgery, find the very most skilled and experienced surgeon you can. Mine had done thousands of robotic RP's over the past 15 years. My main point is for you to take your time and explore all of your options. Whether you choose RP or radiation, your chances of never having to mess with this stuff again are 95%+. You are going to be just fine.
Thank you so much to everyone that responded. It's really helpful to hear. I most likely will postpone the surgery and get an evaluation with a radiation oncologist. I probably do have the "cancer panic" where I feel best about just "getting it out". But of course like everyone, I would like to have the best chance of retaining as much potency and continence as possible. If anyone doesn't mind sharing, would you please let me know what your own experience has been with those two factors post radiation and/or surgery and if the ED did respond well to treatments (meds, injection, or pump implant?) I know that there's tremendous difference in individual factors from person to person, but would appreciate that feedback as well. Thank you again,
Hi Tony. I believe you will get the feedback you’re looking for if you pose that question on a new post so everyone will see it. I’m turning 62, and I’m in your shoes right now and I’m exploring all my options and slowing down, thanks to this amazing support group. Sound advice.
Thanks for posting. Thanks to everyone's feedback, I am going to slow down and at least get an opinion from a radiation oncologist. AS makes me nervous since there is no super clear cut line at which metastasis might happen. But I'm an anxious person. I guess the benefit to surgery is feeling like the cancer is OUT but weighed against the likelihood of possible lifelong side effects, it definitely makes it worthwhile to research all options.
i get it. I am also very anxious, and although I am getting great advice from people on the site telling me AS should be my course of action right now, I am concerned that I may find out at a later date that since last check the cancer has spread beyond the prostate capsule. I’m told that is highly unlikely, but still concerned. As for SBRT or surgery, I just can’t deal with the side effects of surgery, especially when the success rate for radiation is the same as surgery. I also see so many posts about men who had the surgery but the cancer came back because they didn’t get all of it. Make sure you meet with a good RO so you get a good comparison. Honestly, my urologist exolained all my options and was leaning me toward surgery. The RO told me all my options and was leaning me toward SBRT. I also went to the NY Proton Center and the RO explained all my options and was selling protons over photons. Who ever we meet with will be selling us on their product. So now it comes down to our own education and our comfort level with the specialist we choose to believe in.
I had RALP 7 weeks ago. I had very little discomfort post surgery, other than dealing with the catheter for a week. I was able to walk an hour after waking up from surgery and kept walking as much as I could as it helped. Post catheter was a little tricky and learning that the incontinence post catheter is not the incontinence you will always have. I was on a thicker pad for walking around and had to pee a lot when walking the first few weeks. It was tricky, but I got pretty good at ducking behind trees, between cars, wherever I could to let out a stream or spurt! It's taken some time to allow the swelling to come down and the nerves to adjust and me to understand when I really need to pee and when I don't. I had to have time to re-educate around holding my pee and peeing. Doing Kegel exercises (and doing them correctly) I believe was invaluable before surgery and once the catheter comes out. Michelle Kenway on youtube has great kegel exercises for men. And I did see a pelvic floor PT prior to surgery that was helpful.
I started wearing a diaper to bed because after about 2 weeks I peed in bed with only the thick pad on. I learned to put a chuck pad under me in bed and that with the diaper worked great. In the past 7 weeks I peed in bed 3 times. The rest of the time was dry. I still squirt pee when someone makes me laugh unexpectedly or when I really have to go. I now wear a light pad for work and walking throughout the day and haven't had to change it. At night I wear a medium pad if I feel lucky, or I slip into a diaper if I don't feel lucky!
The doc had me on daily sidenafil 20mg pre and post surgery. Some research says it doesn't do much, other research says it may help with blood flow. I was able to feel "mushy" hardness after my first regular weekly 100mg dose about 2 weeks post surgery and each following weekly session I got harder and was able to keep the hardness for longer. It's not where I'd like to be, yet it's better than I thought it would be. I was able to have a dry orgasm the third week and all the following weeks. With a cock ring on I can manage to penetrate and enjoy some intercourse before I turn to mush again. I had a morning hardon the other morning and that was a sweet surprise.
At just over 6 weeks I was able to ride my bike again and it felt really good, and I believe has helped in taking care of what I called my nervous bladder, the sensations of always wanting to pee or thinking I was dripping, or feeling that I was going to pee, which I believe are all post surgical sensations that lessen with time and more neuromuscular activity. I was able to add gradual exercise with each passing week. Gentle stretching, yoga, light upper body 2 or 5 pound weights and now am able to do as many squats, bird dogs and easy crunches I can do. I've been able to hang and swing my legs and cajole my latts to lift my chin to the bar! Soon!
I know so far I'm very lucky. I have learned much from everyone who writes and responds on this website. I am forever indebted to their courage, wisdom, grit, passion and humor. If you need more info feel free to ask. From these amazing club members I did learn to take my time, interview doctors, research and read because we all have to make our own decision as to what path we feel ready to take. We're in this together. You have support. Best to you.
Thanks for sharing so much - I really appreciate your being open and forthcoming on all your experience. Like you probably felt, I'm leaning toward surgery because I would like to have the prostate (and tumor cells) out completely, if possible. I know there's always a chance of metastasis or having some recurrence but feel like the earlier it's treated, the better. After hearing everyone's feedback, it has made me slow down and I'm going to at least get a consult with a radiation oncologist. It sounds like you're doing great for 8 weeks and getting relatively good control back and at some recovery from post-surgical ED. It sounds like you're doing everything right for the best long term recovery. I wish you the best in getting completely back to normal function!
I'm late to the conversation, and I'm sorry that you received your diagnosis.
I was diagnosed at 52 with a PSA of 5.0 and a Gleason of 3+3. I was told all the same information / myths that you were (that Tall Allen appropriately dispels) and, in retrospect, I believe I rushed my decision to surgery. (I was diagnosed 10 November 2010 and had surgery 4 January 2011.)
The surgeon intended to do nerve sparing surgery but, once he got inside and saw that the tumor was larger than expected and right up against one of the nerve bundles, so he took the nerves, too. That meant I was left with one set of nerves and an issue with ED.
Incontinence was an issue for about 6 months after the surgery, but I eventually became "dry" and was able to get by without pads. As time wore on, though, stress incontinence became more of an issue, and I wear a pad as insurance now.
At the 54 month mark, after years of undetectable PSA, my PSA became detectable again. Fortunately, it was so low and so slow growing that we chose to just monitor it. It took six years to get to the widely accepted definition of biochemical recurrence (0.2 ng/mL), and at that point, I moved ahead with salvage radiation therapy (SRT).
It's been just over a year since my SRT ended, and we're still waiting to see if it worked. My PSA going into SRT had jumped to 0.36. Eight months after SRT, it was 0.13; ten months after SRT it was 0.11. I recheck in November.
Thirteen months post-SRT, my ED is worse and incontinence about the same.
Bottom line: If I had to do it all over again, I would look much harder and longer at active surveillance or radiation options than I did in those initial weeks after diagnosis. Please slow down in making your decision.
Lastly, I've been blogging about my diagnosis and treatments since the beginning, and you can find the link in my profile. Remember, each man's experience is unique, and this is just my version of that experience.
Thank you so much for taking the time to reply. I really appreciate hearing your feedback. I'm sure all of us have "cancer panic" and want to get treated ASAP. Thanks for everyone's comments on this board, I would like to know for sure that I've at least consulted with other treatment options and feel like I'm confident before moving forward. I'm curious to know if the injections help with erections even if someone is not able to get them otherwise. I talked to someone who had tried and wound up with priapism but I imagine you have to be careful adjusting the dose. I've also heard that someone with a penis pump was happy with the result and worked well. I don't know if those are options you have any interest in but seems like there are a few things to explore (that you may already have). I know there's no treatment without side effects so it's a matter of picking the lesser evil that is most likely to get rid of the cancer. I'm sure you made a good choice. In the end we'd never know if the other choice was better since everyone may react differently to the same treatment--it makes it so hard to know!
I was 56 when I was diagnosed with prostate cancer Gleason 3+4. This was prior to COVID so I entered a default active surveillance for a year through the pandemic. This gave me time to research the alternatives and new treatments. It's a long story but I ended up being treated by Dr. Leonarks Marks at UCLA. He has a YouTube channel explaining his procedures: youtube.com/watch?v=Jht6sRc...
I am 1.5 yrs post cryo treatment with no side effects and my PSA is 1.5.
Dear TonyI joined the forum about 30 mins ago and already having read a few threads the sage words of the members are outstanding.
I live on the other side of the pond. Last year I was diagnosed with 3+4 GS 7 pc. Small amount of cancer4.All the options were explained in great detail and I was given time and space to come to a view. I must admit that my first reaction was I do not want cancer inside of me and was leaning to having some curative treatment. Spending time looking at the pros and cons talking to others who had been through the mill also was essential.
In the end I opted for active surveillance with 4 psa tests per year and annual mri scan. My veiw was that if it is being actively monitored and if PSA levels remain fairly stable then the chances of spread is tiny. I also thought that if I could "stall for time" then what would the world of pc look like in 5 years, hoping that there may be a significant break through in treatment of localised lesions.
However , after a year my psa levels have dramatically shot up so I am on the path of finding out what may have triggered the increase in psa level. Just had a further mri scan and back to see the Prof on Friday for the results. I suspect it will result in a further transperineal biopsy and then I may be put back in the postion I was in a year ago looking at options but this time maybe active surveillance may not be such a front runner? Who knows let's see what the results tell us.
It seems to be the mantra of slow and steady, informed opinions and a decision that feels right for the individual having fully understood all options on the table.
I hope this helps as a different perspective of a person living in the UK under a different medical regime but it looks like our values align with our American cousins in the approach to pc.
Best of luck with it all. I am sure that you will make the right decision for yourself.
Hi from Texas - thanks for writing and offering your experience. I wish you the best results on your MRI and possible biopsies. I spoke with someone today who had proton beam therapy as opposed to traditional radiation. He's 7 years out and still doing well with an undetectable PSA. I did a little reading and like everything else, it can be a little overwhelming, but appears to mirror traditional radiation in it's effectiveness, but offer likely less side effects due to the more limited radiation exposure to surrounding tissue. I really don't know why it doesn't seem more popular but understand it may be more costly. I have an appointment with a traditional radiation oncologist this week and will make one for the Proton therapy facility as well. I currently have surgery scheduled for the first of November but I'm very likely going to push that out to make sure I'm picking the best option for myself. Let me know how things go, if you can.
Dear Tony,Excellent news. The more expert people you speak with the better informed you will become to inform your decision.
Currently I am trying to drill down a bit more about exactly what my small bit of grade 4 cancer actually is. My view of the rest of grade 3 stuff that is in my prostate is that it is not a "real cancer "and I call it a "wart". However its that tiny fraction of 4 which is the kicker. So I am asking if they have a full handle on what the Pathology is in terms of pattern 4 and has it been classified as fused gland,poorly formed gland ,cribiform (expansil or none expansil), interductal; since some of these pattern 4 are known to be more aggressive forms of cancer eg cribiform expansil . As I say I am trying to drill down to see if I can establish precisely which category of grade 4 cancer I have and if it's one that's at the more aggressive end of 4 then this will influence my decision as to which way I jump since I suspect that the increase in psa levels that I have is that the small bit of cancer is growing a bit too fast and if it is an aggressive category of grade 4 growing quickly then it will need some form of curative treatment whatever that will be and hence I am off the active surveillance regime.
I suspect I will get shouted at by lots of people on this forum but my veiw of whatever form of radiation is that it just that whether it be by a photon or proton or isotope then it all will deliver a dose of radiation to the lesion and destroy the cancer cells together with a margin of surrounding other cells. That all treatments have side effects.
Like most things in life the better handle and understanding i have on it then the more empowered I am to come to a decision be that on the disease itself or the treatment options. So places such as forums and Dr Scholz videos are good places to find information about pc and treatments.
I will keep you posted on events. But keep up your own research, find persons you can trust with their honest advice and put yourself in the best position to get the best outcome for you.
Dear TonyJust to keep you posted since we may be on a similar journey then I am off active surveillance since lesion increasing in sizevas shown on my mpMRI and hence looking for the best option.
I did post on Retzius sparing surgical procedure a couple of days ago because this is what a surgeon is offering. This technique helps with continence issues and erectile issues since they would look to preserve the nerves and blood supply.
I am to speak with a prostate radiologist to see what treatments they recommend and ask about the pro and cons.
However just thought that you might want to ask your surgeon if they could use the Retzius sparing system or it may be the case that its not a particularly common way used in US since it is not that common in the UK? Anyway just thought that I would bring it to your attention as another thing that can be added to what I see is almost a bewildering choice of procedures and I now get the feeling that the mainstream items of surgery and radiation be that imrt, sbrt, mgrgb, CyberKnife, Linac, will all get rid of the cancer but its down to quality of life thereafter and what is important to the individual. For me continence is key, and I would also like not to be trotting off to the bathroom 2-3 times per night. I also want to be sure that once treated its not coming back.
However I do sometimes feel that patients are seen as cashcows and just wonder how much steering is done by the professionals to make patients choose whatever brand of treatment is being suggested. Or am I being too cynical since whatever treatment selected will eliminate the cancer and hence they have all complied with the breif.
I’m not familiar with the retzius procedure. I’ll have to looontjat up. Ted Schaefer is a prominent urologist in the US and is promoting a fascia sparing procedure. Maybe it’s similar to that. He mentions it in the new edition book Dr. Patrick Walsh’s guide to surviving prostate cancer, an excellent book. I spoke with a radiation oncologist and may be more interested in that route vs surgery but also going to speak with a proton therapy radiology oncologist as well. Proton therapy might possibly have better margination to limit collateral tissue radiation of the colon or bladder. There’s just not enough data to likely know for sure since the effects of radiation could be very long term. I believe most physicians want to provide the best treatment but will recommend what they’re the most familiar with and most trained in. I would be hesitant to go any other route than radiation and surgery just because the data is again so limited. Any of the options are probably going to have some negatives. Just a matter of picking the lesser evil? We’re lucky though that 3+4 is very likely curable.
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