I’m a 63 yr old male diagnosed with prostate cancer 2 1/2 yrs ago. Biopsy results were mid-grade 4+3 prostate cancerProstate volume around 50. Spot around 2 1/2 cm ,Was encouraged to do treatment (actually felt pushed) but declined and keep an eye on it. New MRI results… spot hasn’t grown but is abutting the prostate capsule, prostate volume around 90 due to my bph I’m sure. Dr. Pushing for treatment again. Says I shouldn’t wait 6 months because the spot is abutting the capsule. What? But prostate cancer is the slowest growing cancer there is…. It’s still contained, I’m not having any bad problems. What’s wrong with just keeping an eye on it ? When it ever does grow out of the prostate capsule then treat it but I’d say remove it.
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Androgel123
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You misunderstand how cancer works. Those pattern 4 cells morph into cells that metastasize. Metastasize means it doesn't just eat its way outside the prostate, it means those cells can travel in the blood and lymph and plant themselves in distant locations. If one is interested in a cure, one has to treat before it metastasizes.
Thanks for your reply. 👍 But what about it being a mid or medium grade cancer? Doesn’t having a medium risk of spreading give me better odds of it happening? And so quickly??
Your type of prostate cancer is called "unfavorable intermediate risk." GS4+3 is a trigger for immediate treatment, and the large tumor amplifies the risk.
Thank you. But I don’t have a large tumor or are you talking about my prostate size? My tumor or spot is only about 2 1/2 mm not cm. I may have typed cm by mistake.
Please get it right, it's important. A cm=10 mm. How big was the lesion on the T1 orT2 report of the mpMRI, not the biopsy?
My biopsy showed 3+4 grade. After RALP, I was reclassified as having 4+5 so it is possible to under estimate your situation through biopsy sampling. "Slow growing" is a term used often and I believe over rated. In 6 months you could already have extra-capsular extension / mets. I know there are risks and downsides to treatment but my amateur opinion is you are playing with fire by kicking the can down the road. I wish I had the choice you have.
Thank you for replying . I understand what you’re saying . But I have gotten by 2 1/2 yrs. Without any growth. I’m not trying to be stupid. It’s just my situation. I just married 2 yrs ago and the thought of us not being able have sex is awful, And the leakage and all that. I’m not able to wear a depends or a diaper for it either. I have inguinodynia which prevents me from being able to wear underwear or pants because of the pain . Also have severe sciatica which is horrible. So put all that and all the pain I have…my quality of life is going to be awful. I just want honest opinions ( like yours) and gather all the information I can before I make the decision to take it out. Yeah I know,… I been kicking the can down the road but maybe now you understand why. I’m just hoping I can buy a little more time , I was hoping a couple years. From what I’ve learned is someone with a 4+3 it could take up to ten years to spread. Only 20% . chance. And after it has metastasized you could even live ten more years. I just don’t know what to do. My wife and I had sex the day before my PSA was tested and that’s a no no. So I want to retest it in January and go prepared for it. If it’s lower that’s good right? My PSA went from 7 to 9 to 14 and now 12. So if it goes back to 9 in January what then?
And please tell me a little more about your case and what choices you have that are different than mine. Thanks
Maybe I could have phrased it better but my cancer had already spread outside my prostate when I was diagnosed. I had no "choice" about whether to get treated at that time or whether to have nerve sparing surgery. I had enlarged prostate for years with PSA creeping up but less than 4. My urologist had retired and my regular doctor said he could watch over me. We tested PSA annually and did DREs. He kept telling me that for a guy my age with BPH that PSA between 2 and 4 was ok, hell, even the results chart on my medical records noted it as normal. I went on a two week bike trip and got tested too soon with a PSA of 7. It scared me so I re-engaged with a urologist, one month later (after no riding or sex) PSA was down to just over 3. They continued to test periodically and PSA kept creeping up towards 4, urologist wanted to keep watching. I made the comment that I was surprised they weren't calling for an MRI and he said he would order one if I wanted and I said yes. It came back PI-RAD 5. Now a 3 month wait for biopsy which diagnosed cancer with extracapsular extension. I lost precious time taking the assurance of my regular doctor. The rest is in my bio. I see you clarified the size of your lesion, I will have to think about that and whether I would change my thinking or not. I have three friends who were able to have nerve sparing surgery, 2 robot assisted and 1 manual. They are all enjoying healthy sex lives and cancer free. I understand you are a newly wed, congratulations for that. I understand your concern about losing the capability to be intimate. For every story you hear where guys had good results you can find one where the outcome was not so good. Surgeon skill is definitely a major determining factor. There are multiple options for you to treat, be cured and maintain a healthy sex life as long as you don't wait too long. I wish you the best.
Thank you my friend and god bless. 🙏 Please let me know about your rethinking.
See my reply to Stealthrider - you should at least check out people like Scionti and Sperling (prostate center’s). They are fully into minimize side effects. If I could have gone that route, I WOULD have. But, big thing - pay as you go and either get reimbursed (or not). About $30k for biopsy and treatment. Not sure with the location of your lesion - but they’ll tell you beforehand…
I certainly get what you are saying. My urologist was VERY nonchalant- even after Pi-rad 5 lesions found on PMRI. I smartly “rushed things” (everything was taking weeks to months at first) and went to an “out of pocket” specialist- Dr Sperling in Delray Beach for biopsy (he had a cancellation so a month sooner than local doc). Then possible ablation - I was thinking I’d likely be done with it all, if I had to do anything beyond the biopsy.
Biopsy shows high grade 9 Gleason but localized. Dr Sperling can’t help - he likely CAN help YOU Andro - you should check into it. The entire idea is minimizing side effects. Seems much better than doing nothing. Cost is the issue, unfortunately, for some - but I believe it’s sometimes covered after the fact.
So, months and months passed - and I being me pushed things along - thankfully! With 5+4, I want treatment ASAP. I don’t mind the “you have time” to a degree - but some don’t have time (it’s spreading at SOME point and it’s not like there is a timer you can watch). Higher risk has to be treated anyway, so why NOT get moving - at least fairly soon.
I just keep thinking I could have microscopic mets right now (no mets according to PSMA-PET), or, if I took several MORE months to get where I FINALLY am - just starting treatment, I wonder if that would be the difference for a much worse time of it…
My thoughts are to deal with things…
Everyone needs to make their own decisions about treating their prostate cancer. My approach was the polar opposite of yours. I was 3+4 but with two moderate sized lesions and PSA was rising fairly rapidly. I was pretty sure it was still contained and knew I would need treatment at some point. RP was my best choice. My surgery was six years ago and I'm doing very well in every way (other than normal aging, mid 70's now). BTW, my prostate increased in size from about 75cc to 152cc's in eight years, hence chose surgery over radiation.
Thank you for responding. And sharing. Yes I’m going to get removed surgically. It’s just when that I’m not sure of. Please, what would you do if you were me? I just married two years ago so the longer I can put it off the better. Plus I already have inguinodynia and severe sciatica in which I can’t get comfortable and have a lot of pain.
You have received many good and valuable replies. You have a very large prostate. I dealt with troublesome urinary symptoms for many years because of my bph resulting from my very large prostate. I looked into radiation but came to the conclusion that any form of radiation would make my urinary symptoms worse. Surgery would eliminate them. But, that was 6 1/2 years ago and maybe radiation today can be effective for very large prostates. I think you need treatment sooner rather than later. I kept searching for a silver bullet but I soon realized, there is no such thing. Keep in mind, surgeons love to do surgeries. You owe it to yourself to fully explore radiation. I just hope your cancer is contained now and you go forward with whatever treatment you choose fairly soon. Choosing the best person for your treatment is absolutely essential.
Thank you . We’ve decided to do radiation treatment soon as possible. Was lining surgery up but we changed our mind . God bless.
If your sex life is important to you, you don’t want surgery. Radiation has a far better chance to spare you the ED surgery is well known for. Surgery also shortens and thins the penis, in case you’re not interested in that.
Radiation has made many advances while surgery is pretty much the same. If your disease escapes microscopically, which it will, you will need to take action. However that happens asymptotically, so you won’t know until it’s roaming-then it’s too late to catch it early.
As was explained to you, once it starts to roam you have systemic disease and you don’t want that. Your absence of symptoms is great but that’s basically irrelevant.
I had a confined tumor butting against the wall also. Curative treatment at this stage is critical, and more than worth it. Take it from one who opted for it.
Did you do RT?
I did RP and like so many others I needed RT afterwards. I could have done as well without it.
Again, it’s your stated priority on your sex life that has me so blunt here. I would not trust the evasive doublespeak of the average urologic surgeon with regard to nerve sparing etc. The chances of restoration of function are much better with RT.
Thank you . We’ve decided to do radiation treatment. Thanks to all you guys help. God Bless you
Excellent. Onward! You will do great, don’t forget to exercise 👏👏👏
From what I've learnt, if you treat it now while it's contained it may never come back, once it gets out you will have approx 10yrs to live give or take as some live longer and some shorter. Good luck
Thank you. 🙏
I will
Now that you have a PCa diagnosis (through biopsy) PSA testing is virtually meaningless until after you have treatment of some kind.By delaying treatment now, you are likely trading for a few better symptom free years now at a cost of more pain, weakness, sickness and death down the road. Now,if your overall health says you don't have that many good years down the road, that may be a good tradeoff. But metastatic cancer ain't no walk in the park, and you will have no warning before it metastasizes - if it hasn't already.
Wow. Makes perfectly good sense. Thank you. I will do something very soon but seriously thinking about RT over RP.
What kind of pain weakness or sickness?
PCa often metastasizes to the bones, often the spine. When this happens the bones weaken and can fracture. Spinal compression will press on nerves and can make it impossible to stand or walk without pain. Advanced PCa will be treated with Androgen deprivation which will reduce muscle mass. Combined with weakened bones this can greatly reduce mobility.
Mets to organs (including brain) are also not uncommon, with their own problems
We’re gonna wait and watch it . We been watching it for 2 1/2 yrs without any change,
I have a great quality of life at high PSA rising from 7 to 18 in 7 years, and still no biopsy, no symptoms still. Only non-invasive rectal ultrasound nearly a year ago. See bio if interested, I decided to not treat, when posting here the vast majority of people will push treatments so I was blasted by many people. Quality of life is to me more important than length. High change of impotence even with treatments.
nejm.org/doi/full/10.1056/N...
Read the ProtecT study above- 15 year outcomes are virtually the same.
IMO you need to do something NOW versus later.
Lots of good advice above so I can only add that stretching, exercise, weight loss will help in many ways including with your Sciatic Nerve pain. Yes treatments has side effects including some with ED, but many of us here still have very active sex lives.
Using a highly rated experienced Doc at a great facility increases your chances of success and lessens chance of side effects.
Thank you
You’d be foolish to wait any longer. The cancer might have already escaped the capsule and be in your bloodstream floating to other parts of your body. My radiologist said MRI imaging is wrong 20% of the time.
Thanks for your thoughts. Very valuable to us. I just had the MRI and the 2 1/2 cm spot is touching the capsule not broken through yet. Broad capsular abutment, Dr. Said it was touching it. Anymore thoughts? If I had it removed what could I do about leakage if I can’t wear depends or underwear. I have to wear a one piece suit when I go out and a nightshirt around the house and in my yard. Also have severe sciatica. Thanks again!
I had surgery (I was a Gleason 8) and my tumor was also right up against the outer capsule. When the surgeon removed it he said the surface of the prostate on that side was real rough. It was just getting ready to break through. Even though I had surgery I saw a radiologist and he told me 20% of MRI’s are inaccurate.
It’s been 7 years now and it’s like it never happened. No incontinence and no ED. The surgeon makes the difference. I can’t emphasize that enough!!!! My surgeon was world renowned and had done over 2,000 surgeries. If you live in LA I know 4 great surgeons. Again the surgeon makes the difference. Do your research. Travel if you have to as it’s only a one night hospital stay and you can follow up with your local Urologist. Remember it takes 250-500 surgeries just to get proficient on the robot. Practice makes perfect.
FYI, my surgeon, Thomas Ahlering at UCI in Orange , CA, keeps records on his patients. In your age group for surgeries on patients 1255-1615 60% were continent after 30 days and 97% were continent after 1 year.
55% had recovered sexual function after 3 months and 81% had recovered sexual function after 2 years (there will always be cases where the cancer had spread to the point where nerves cannot be spared so it will never be 100%).
Wow, thank you.Says the surgeon that’s going to do the robotic surgery. He’s a urologist. Has been one for over 20 years. He’s got 4 1/2 stars but I can’t find how many surgeries he’s done that way. Ty
Be careful. I suspected that I might have prostate cancer before my urologist actually diagnosed that I had it. So I had already done my research and knew who I was going to have do my surgery if I did indeed have cancer. I asked my urologist, after my diagnosis (who also had 4.5 stars and was a great urologist) , how many surgeries he did a year and he said 24. About 2 a month. Thats what a prostate surgeon that does nothing but surgeries does in a day!!!! There is a HUGE HUGE difference between a surgeon that does nothing but prostate surgeries and a urologist that also does prostate surgeries. The difference could be a lifetime of incontinence and ED. DO YOUR RESEARCH and find a surgeon who has done 2,000+ surgeries!
One other comment. The really good prostate surgeons have a 3 month minimum wait list for surgery. Plus they might not take insurance since they don’t need to because demand is so high. My surgeon did Mitt Romney’s surgery when he was diagnosed with prostate cancer and he could have gone anywhere. Cost me $7,000 out of pocket for the surgery plus $500 for the consult (best money I ever spent). Insurance picked up the anesthesiologist and hospital stay. My advice is get on a wait list in case there is a cancellation. My surgeons office told me they never get cancellations but I asked to be put on a list anyways. A week later they called me because someone cancelled and I saved myself 3 months of that tumor growing inside my prostate. Who knows, it might have saved me from it escaping the prostate!
Thank you so much. My surgeon - Urologist has good reviews but can’t see how many surgery’s he’s done or any statistics. I’m disabled so pretty much I’m covered with him as far as insurance. But he doesn’t do surgery every day. I might have to go the radiation treatment way. Our sex lives is very important to us.
I'm 53 and had 4+3 unfavorable intermediate risk diagnosis. I was concerned about sexual side effects as well. I was diagnosed during the end of COVID restrictions letting up and getting in to see my providers was awful. My tumor grew by 2 mm over 4 months and also became capsule adjacent, and once they determined that, my providers worked quickly to get me into treatment. I did radiation only WITHOUT androgen deprivation therapy (ADT), but if I progressed, I would have had to follow with ADT and its side effects.You said it isn't growing but it's now at the capsule and the volume of your prostate has increased (per your profile)? I think that statement confuses many of us, a prostate tumor doesn't migrate within the prostate itself, unless I'm misunderstanding. For a gland that is approximately 3x3x5 cm, any size changes with a diagnosis are alarming, and imaging doesn't always show everything, as some of our fellow posters here who have had radical prostatectomy have shared. If it gets outside the capsule, spreading to the bones or other areas that the cancer likes, you'll be dealing with a lot worse than the potential side effects of urinary and sexual problems. While everyone responds differently to treatment, you'll see many here have a decent sex life post-treatment, like me. I'm not 100% a year later, but I'd say 90%. The only issues I really have are reduced semen production and occasional discomfort while the radiation is still doing it's work, but I'm not incontinent and no longer have erectile issues (thanks to much of the advice given in these forums). Early treatment, much like preventative care, is key to reduce potentially worse long-term side effects down the road.
If you are just married, how does your spouse feel about you foregoing treatment? Prostate cancer is only second to lung cancer in fatalities for men. I'm not intending to sound doom and gloom, but you may be risking a lot more than some sexual issues. Talk to a Radiation Oncologist and a Med Onc. Get the full picture, for you and your spouse.
Thanks for responding, your feedback is very valuable. I’m 63 my wife is 67. She behind me 💯 %. We already knew the test results from the MRI before we went to urology . We decided to have it removed, but I wanted more information so I looked some stuff up on Utube. Dr Sholtz in California. He said alot of stuff that made us want to change our minds and just watch it closely. He said things like , a person with a 4+3 only had a 20% chance of metastasis. And then went on to say that even after metastasis the person could still live 10 more years. Then he went on to say that everything is geared towards treatment and that they play use your fears to push you towards treatment. To make money and that they don’t really even care about the patient. He also said, people with an 8 could live ten more years. And he kept on emphasizing that this is the slowest growing cancer there is and it’s not quite serious as other cancers. Which makes us think we still have time before we have it removed. For radiation therapy you have to have 4 seeds planted around your prostate which is like having a biopsy. The a gel spacer put in through your perinium. My biopsy was horrible, after I got home I was in terrible pain… and there’s risks getting the gel spacer in, that can cause complications or need surgery. I have inguinodynia which prevents me from wearing anything around my waist. Underwear or pants or even a diaper. So I’m concerned about how I would manage leakage after surgery. Please respond and thank u so much. 🙏
There are different types of radiation. Mine was non-invasive and only 5 sessions. I had the SpaceOAR placement, it was not anywhere as uncomfortable as the biopsy. Don't base your treatment on a doctor who doesn't have access to your information, especially with your other conditions. Everyone has different treatment paths, that's why it is important to talk with oncologists. I'm glad I did, as I almost had it cut out without knowing the full affects after. Doctors like to doctor, as I say working in healthcare myself, but they often think about treating the problem but sometimes dismiss the patient's desired outcome. That was the surgeon I consulted. The radiation oncologist I consulted, who ultimately did my treatment, was just the opposite and fantastic, answering all of my questions, addressing my concerns. He sends random messages to me, even after a year, to see how I'm doing.
While there are good resources online, Dr. Google and self-diagnosis did not go to years of school and gain experience through treating similar patients, and certainly doesn't account for treatment option for your other diagnoses.
Same with our resources here, most of us can only describe our experience and treatments, but that doesn't mean yours will be the same, or have the same outcome. Many have had different results doing the same things. I took info from my friends here and brought it to my oncologist who told me what was and what wasn't appropriate for me. Write down your questions, get them answered, bring your wife, so she can get her questions answered too. Consults give you options based on you and your unique physiology, not general info based on someone's good or bad experience and perspective.
Thank you… so you had the spacer put in. Could you tell it was there? Was it uncomfortable the whole time it was in? I’ll choose to be put to sleep to have it put in. I was asleep during the biopsy. After all I been hearing from everyone I’m leaning more to do something, I need to decide between radiation or removal. Now if I have rt and it doesn’t work drs told me you can’t have it surgically removed after that.
Don't need Spaceoar...can hide microscopic cells from the radiation...risk vs benefits ain't worth it..did mine RT without spaceoar..worked out fine ...gl..ask Tall allen about spaceoar..
P.S. Had ECE as werll (Extra capsular extension) don't worry about it radiation will carpet bomb the whole area...had that too..all gone...easy peasy...
if it goes out side prostate you will need radiation, i think. I am not a doctor. If it is growing i would treat it at your young age.
They said it hasn’t grown but I have a broad capsular inbutment meaning the 2 1/2 cm spot is touching the capsule it’s in. The capsule that the prostate is in . Ty. Any more thoughts? Thanks for responding. 👍
Cancer thrives on time and obscurity. There is no possible way to absolutely know the cancer is not out of the primary tumor - far too many of us have learned this harsh lesson.
I believe you but I had a full body scan and they said it hadn’t spread, that was when I was diagnosed. 2 1/2 yrs ago. They’re gonna do a pet scan soon to see if it’s anywhere else before I have surgery. So, we’ve told them we wanted it removed and have it set up that way but I can still change my mind and continue to wait. It hasn’t grown they say but I still have the abutment. This is a life altering decision as you know. Any more thoughts? Your opinion is valuable and will be taken seriously. Ty
I would encourage you to talk to a rad onc and/or a med on before going through with surgery, surgeons will always tell you surgery is the best option...
We face many disparities and divergent opinions with this disease, making the decisions more difficult and challenging.
Many on this forum have a strong bias against surgery. I am nearly ten years post my RP and without question would chose it again but would begin with lymph node surgery using the frozen section pathology method, first removing the common iliac nodes. I leaned of this method prior to my , ePLND, my third treatment.
My decisions for RP and the ePLND were largely based on imaging. mpMRI provided definitive details that surgery was my best chance to get all the tumor burden with sufficient margins so no risk to urinary bits
As I share prior to my ePLND I went to Europe for PSMA PET CT and Ferrotran nanoparticle MRI. The PSMA was clear but the nanoMRI successfully identified cancerous pelvic lymph nodes.
In April of this year I had a liver MRI - it was clear. Just three months later a PSMA PET successfully identified a single 2.6cm metastatic melanoma tumor.
Again, IMO based on my experiences a doctor is simply guessing when they say cancer has not spread.
I’m no mind reader but I think you know what the right course of action is but are trying to justify postponing it.
TA nailed it when he said G4 can metastasize without having to pierce the capsule. And biopsies enhance that risk.
I had RP four years ago before I learned about all the focused radiation options. If you are a candidate for one of them, jump at it. Today.
That’s assuming that with all you have going on you want to live a good while longer. Maybe subconsciously you don’t. That risking adding more is too much. If so, imho, you owe telling your spouse that.
I’ve had sciatica for 35 years. Have altered my life to only do things that don’t exacerbate it, not always successfully. Chronic pain is depressing and hinders good decision making.
RPs make many/most men technically impotent. The only advantage is that the post surgery biopsy tells you exactly what you had and any rise in PSA tells you that it was unsuccessful, whereas radiation does neither. My guess is that most men with RP get a decent reaction from Cialis and a very good reaction From trimix . You lose spontaneity, but as you age odds are you will lose it anyway. Women’s bodies change too, and it takes time and patience for both of you.
Good luck.
Thanks for sharing, now I’m leaning more towards RT. Just a little apprehensive about the gel spacer. They say things could go wrong like injecting it into the bladder or rectum, infection and so forth.any thoughts about that. From what I’m understanding is you wish you would have taken radiation treatment instead of RP?
Respectively, prior to my RP decision I unequivocally determined it is false to say it makes 'many/most' men technically impotent. I recovered naturally without the need for meds. It is unfortunate the additional benefits of penis pumps were not presented to me.
Also, your statement "The only advantage is that the post surgery biopsy tells you exactly what you had and any rise in PSA tells you that it was unsuccessful" is actually two very important very useful advantages. Two additional are the immediate removal of the primary tumor burden and a better determination of metastasis.
My initial biopsy pathology was G 3+3 - final after RP 4+3. We also knew from my pathology and post RP nadir that my cancer had indeed gotten out, metastasized.
Similar situation to you only 11 years older. I had genomic testing of my biopsy results to get a better understanding of the 4+3 reading. For me that showed 67% chance of metastasis in 5 years. Two of my friends ignored their PSA or didn't even have it checked and they are all stage 4 with bone/lung cancer on top of prostate cancer.
My wife and I have sex often and didn't want surgery. Looked at several options and I chose to have SBRT without ADT in Dec 2023 . I must say the side effects have been pretty minimal. My PSA dropped from 9.8 to 1.2 within 9 months. No problem with erections and sex is great!
Side effects have been ejaculate volume much lower though semen volume is fine. I have occasional slight urine leakage if I don't get to the bathroom quickly. No issues with blood in stool. Did need Flomax during and for a month after treatment.
Otherwise I feel great and am very active physically.
Hope this helps.
So you got radiation treatment without hormone treatment. Sounds good. Did you have the markers and gel spacer put in before rt? Your input is valuable to us.
I had 3 gold fiducial seeds and Barrigel implanted at the same time. For me, implanting the seeds was not painful. But the Barrigel did hurt. My RO checked the Barrigel spacing after implant using ultrasound and added more to be sure there was good separation. 3 weeks later, I had MRI immediately followed by CT scan. Just before the CT scan, I had to take an enema, drink some fluid with dye, and have ~100ml dye fluid injected into my bladder through my penis. (Oddly that didn't hurt, though it did feel strange to have cold fluid going into my bladder.) Then they put me on the table with the combined radiation/CT scanner. They made a mold of my body while on the table and put a couple of tiny markers for course alignment later. Then they took the CT scan.
For the next week, they merged the MRI images with the CT images and wrote the program to focus the radiation beam to irradiate just my prostate. Then treatment started. I had 5 treatments - Friday/Tuesday/Friday/Tuesday/Friday.
After the first treatment, it was immediately very painful to pee (burning) and flow rate was dramatically reduced. 2 Flomax/day solved that and after a month, I was able to stop taking it. For the treatment, I had to take an enema 1 hour before and try to have about 100ml in my bladder. Then they put me into the mold they made on the table, positioned my using those markers and ran a CT scan. After about 10 minutes, they adjusted the table very slightly (<2mm & <2deg) to be sure the targeting was correct for where my prostate located at that moment. Then radiation came on and in about 3 minutes, it was done. Easy, painless.
Though the RO wanted me to have ADT. As explained to me, ADT would add perhaps a year to my life expectancy. I did not want the issues with ADT at my age (76), so I chose not to have it. You may want to think about that though since you are 63.
BTW, I had a DNA test done to see if I was a good candidate for SBRT. UCLA was doing a study. Apparently about 12% do better with IMRT (28 low dose radiation treatments) rather than SBRT (5 high dose radiation treatments). I was ok for SBRT.
And I forgot to ask how long was your treatment?
I documented my experience with the spacer and fiducial markers here: healthunlocked.com/prostate...
I felt it for a few days, but it passed within a week. I wouldn't say it was painful, more uncomfortable, like after riding a bike too long. I didn't actually realize they placed the markers at the same time. I can't really say I've ever noticed them.
It is true, if you get radiation, surgery is no longer an option. However, if necessary, you can have additional radiation treatments. I had 5 high dose treatments without ADT, as genetic testing said I was a less likely to have metastases, so my doc was okay with no ADT, despite having naturally high testosterone levels. My numbers continue down, but not as quick as some who do use ADT.
My father had radical prostatectomy at 40 before laparoscopic procedures were a thing, and another friend almost exact same situation to mine at 51 had RP three years ago, and both told me to consider radiation if I was a candidate, even with modern advances on surgery. I'll admit, losing length, girth and ejaculation altogether from surgery was a vain reason to choose radiation, but so far, I'm happy with the results and few issues I've had.
wow, thank you. I want to do exactly what you did. I’m going to talk to my dr. And tell em I changed my mind and want to do RT and without hormones and see if it’s ok with them. Thanks again and god bless
When you talk about length and girth exactly how much length do you lose and girth by having RP?
i was biopsied positiv 4+3 and 3+4 end of 2022 i waited 9 month before doing surgery because i wasnt sure about risk and benefit of the cure. May be i was lucky ( good surgeon, good body) but i dont have big side effects of the cure. I have side effects but it s in a acceptable range if i consider that my psa is now 0.03 and hopefully my tumor gone for the rest of my life. Psma pet scan was clear before surgery, no lymph node involved. If i would have waited more some tumor cells could have had the opportunity to go somewhere else in my body and in that case no surgery could cure me. Only radiotherapy could eventually cure or adt could just delay the ‘problem’ for a couple of years of course but ‘problem’ still here. Surgery is the only non toxic way to be cured if you still wanto to be cured, but the thing is that you have to deal with some side effects. Iwould say : The saint is worth the candel. Of course mortality doenst change a lot but how could be the quality of life with a neverending treatment?
Wow this is tough! I’ve heard from a few that had RP and they advised if I can get radiation treatment over RP then do it. I’m sure because of what they are experiencing from the surgery. My god, what a decision to have to make. This is all so depressing and confusing. God help me to make the right choice. 🙏
Have you been able to get an erection or have an orgasm yet? How long have you been healing and have you noticed a difference in length and girth from the surgery? And how do you feel right now?
This forum favors SBRT but there are many of us that had RP including me. I then had salvage radiation with ADT and happy to say I am fine monitoring with every 90 Days having a PSA test. No Incontinence and having great sex. I just wish someone would have told me early on that Viagra does lots more then just give a good erection!
Cialis works better. Less side affects and lasts longer and gives you a larger window after taking to have sex.So you took it out…,how did losing length and girth do in your case?How much do you lose after RP ?
I never measured before or after but sine a RP removes prostate and then reattaches you will lose a small amount of length. Didn't notice any girth changes so if that happens it was minor. Maybe others can answer more precisely.
i discovered that having an orgasm dorsnt depend on the stiffness of the penis. Before the ‘goal’ was shooting the semen, now as there is no semen it s just reaching an orgasm. That is new and i can do it often more than before (if i desire). I use sometimes pills, but i dont like the side effects. May be my penis did get a bit ‘shy’ so it seems that it is shorter but it s not. Girth is equal may be more because i ‘trained’ with a pump at the begining of penile rehab.
How about leaking? How bad is it? We changed our minds and gonna do RP.
Nearly no leakage. I m not overweight. Went swimming so i did had to care about leaking or not.
Keeping an eye on it is fine for the slow-growing variant o f the disease and a low gleason score. If you have a gleason 7 and the tumor abuts the capsule, it is much more likely to grow beyond the prostate.
I would get a second opinion if you feel strongly about not getting treatment but you should do so ASAP, as it may metastasize before they can treat it. Then, your chances for a cure are very low.
Thank you and god bless…🙏
On the scan i had 2 days before surgery the tumor was abulging the capsule and it wasnt so visible on the scan 9 month before. Of course one can wait, but it is everyones decision… for what, what arr you waiting for or what are you affraid of ?
I’m afraid I’ll lose my sexual desire and ability to have an orgasm. I’m newly married 2 years . Our sexual life is very important to us.
i dont think you will loose your potency and absolutly not your orgasm. But you will habe to ‘exercise’ to regain your potency or lets say a satisfying potency.
Does potency mean erection?
i mean erection yes. But i would say enough hard to penetrate. You, we , i m not 20 y o anymore.
Hmmmm, we’d be ok with that ! If I can Still have an orgasm that will be great. That takes care of my end and my wife doesn’t need penetration to be Satisfied and happy. So tell me, will it feel like my junk feel like An appendage hanging off my body or will it feel kind of normal.? And, if we are already very sexually active wont that be in my favor as far as being Able to be sexually active after?
Sex means for the male : penetration. Ok in that case they are still meds. Viagra, cialis, trimix etccc. But this is not only sex. Sex has to do with intimacy… orgasm is allways possible if your desire is synchron with your bidy and needs. Being a penetrative male : that is the question.
Using radiation you will never know where is really the tumor. PSA will just go slowly down. Of course radiation is in these modern time less ‘toxic’ than 10 years ago, but there are long term side effects (20 years after treatment) you might be dead from something else. That s what makes prostate tumor such a bastard cancer.
We thought we made A reminder that we were going to do radiation treatment. But now as we are still studying we think we need to take it out.So now we are back to square one and undecided. This is crazy. Back-and-forth back-and-forth. 😩
If you are uncomfortble with your current Docter's treatment plan get another opinion. From onocolgist rather than an urologist.
I will
I am similar age to you, but 3+4 with small pattern four and a low decipher score. I am moving towards treatment. Even though some some urologists told me that AS might be an option for me. As Tall_Allen right puts it. Once it metastatizes, it is a different ball game!
Just a caveat. I am a doctor, but in computer science
4+3 is definitely not a candidate for AS. Even 3+4 with a small pattern four but I Decipher score is not a candidate for treatment. I respect you quandary, but I would move towards treatment.
The wheels are in motion. Thank you!
Reading the posts, I want to add that every man is different and sexual recovery is individual, depending on what treatment you choose. If you get a RP then , will your doctor remove all nerves or some or none?
I suggestion that you definitely get a second opinion, as suggested and bring in an oncologist who has a specialty in prostate cancer to review your options and the side effects and benefits. It's your body and your decision but you do need to be well informed before making it.
Being informed and having realistic expectations is critical to your health and your relationship with your wife. You need to understand what your options mean as a couple and also separately to you personally.
Good luck and keep us posted.
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