Overall risk - high side of low category. cT2a. 3+3. 50% cores positive.
PNI present. Tumour sits near capsule and left penile nerves.
Decipher - 20% chance of high risk. mpMRI - no visible spread.
MSKCC nomograms - 82% or 74% organ confined (3+3 or 3+4)
Dr's say radiation or RP surgery are equivalent for cancer control. Is this really the case?
Those nomogram numbers give me pause - up to 18-26% chance of escape. So question becomes whether radiation could be better to take care of the escaped bits, just to be on the safe side, design a treatment that assumes some escape?
Is there data comparing RP and SBRT cancer control specifically for low-intermediate risk recurrence? I would expect that radiation could be superior if they radiate around the walnut to kill the local microbits that could have leaked out? Similarly considering the PNI.
Any thoughts are appreciated, thank you.
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There will eventually be a randomized comparison between RP and SBRT from a trial in the UK called PACE-A. It is recruiting slowly, so it will probably be a few more years until they have results.
We did. You did. And your help and this forum of amazing men and women have been unbelievably valuable. I am leaning towards the radiation now but just checking myself before the plunge and going around again to review my decision whilst comparing to the surgery option. My question this time is to try to drill into my specific situation around cancer control - it feels to me like radiation could be a better approach for cure than surgery for me - given reasonable chance of escaped bits - because we could design to spray the micro cancer around the prostate where it connects to my bits, so i get a little more cancer control but not too much heavier on the SE side? So was looking to the folks here to weigh in on this to see if there was any data or experience to back this up.
DRE detected nodule and increase in PSA were what pushed me to get a biopsy. This was before turning 63. The biopsy revealed advanced cancer, G9 in 9 of 12 cores, PNI present.
Next were CT and bones scans at UW Medical Center. I scheduled the earliest date I could. The day coincided with my birthday, yet I didn't care. I needed to know if it had spread. The day was not a fun birthday.
The day of my scans was long. Upon entering each room at least one staff member would check my wrist-band for patient confirmation (name, birthday, etc...). On every occurrence (and there were many throughout the day), I would hear "Happy Birthday!". Sometimes in a chorus with other staffers as well. Really..., I thought? Yet,... I knew they meant well.
Couple days later, results from scans came back.. I can now say in hindsight, it turned out to be one of my best Birthdays ever! All scans came back negative! Diagnosis was determined as locally advanced. Yet still, there were treatment decisions still to make.
The "discuss options" visit with my urologist was about a week later. I was given the same two choices of radiation or RP. By this time, I had read up enough by now to ask questions relevant to side-effects, treatments, and lifestyle. It was a difficult decision, knowing it was a decision I have to live with. I decided on RP, I wanted that beast out of my person! It was also a comforting factor that if recurrence happened, radiation would be available.
One last mention in my experience. It was only until after I made the decision to go with a RP, that the neoadjuvant clinical-trial option was presented to me. I can only believe this wasn't mentioned to me prior, as they may have felt it would have influenced my decision.
Feel free to ask questions on this forum. I found it very informative. There are many here I've learned to respect, and appreciate for all the support and research they bring. Tall Allen or TA (above in this thread) is one of them. Take a (face wearing mask) walk around Green Lake and relax. Rely on your knowledge and gut. I know you will make a good choice.
2 cents worth.....I doubt there is a best choice. if you have recurrence after treatment, you'll probably second guess your decision, whatever it is/was. If you don't suffer recurence, you'll be happy with your choice, whatever it was. I advise to talk to RO about combo brachy and IMRT of some sort.
Please look at the results graphs at prostatecancerfree.org. Be advised that some men have questioned the findings, as a number of sponsors have radiotherapy connections.
Do you care about QOL after the chosen treatment? If so, you'll need to compare the probabilities of suffering various side effects with the diferent treatments.
If at all possible, it would be great to have an unbiased professional opinion. I believe, but am not sure, that John Hopkins, for $$$$ of course, is now offering a service for men who are seeking an outside opinion on an individual's situation.
I could be wrong but i contacted Johns Hopkins a few months ago regarding a remote second opinion evaluation of my case and they told me they no longer offer that service. I didnt follow up further but just FYI. Good luck.
GL10 here, 5+ years, just turned 70yo --- with currently available monitoring and information, my thinking if I was a 3+3 would be along the lines of Stevecavill.
"...Active Surveillance is not “no treatment,” but rather a strategy to treat you only if and when your cancer warrants treatment (some think of it as deferred treatment only if you need it).
It can feel counterintuitive to be told that you have cancer, but that the best option is to sit and wait. But studies show that men with low-risk prostate cancer who have been on Active Surveillance for 10 to 15 years after diagnosis have remarkably low rates of their disease spreading or dying of prostate cancer. In fact, a Johns Hopkins study of men on Active Surveillance found that, 15 years later, less than 1% of men developed metastatic disease. This is important because treatments used for localized prostate cancer—surgery and radiation—have side effects that can alter a person’s quality of life..."
The list of questions from Tall_Allen alludes to ED but does not go into detail. If I had it to do over again, before deciding on RP I would dig into the details and probabilities regarding the surgeon's representation of good probability of success for "nerve sparing". If I recall correctly, I later saw info indicating that the success rate is actually on the order of 50% of the attempts (i.e., not counting those cases in which nerve sparing was not attempted, presumably due to indications of cancer surrounding those nerves). For me, that coin toss came up not totally dead, but so far (~19.5 months post-RP) inadequate for intercourse. (Thank goodness for Tri-Mix!) The reason the surgeon gave was that my prostate gland was swollen at the time of surgery; I don't have info on the range of reasons to which lack of success is attributed. The main point being, I have the impression that RT has less risk of ED, as alluded to by that question in the list from Tall_Allen.
If you would like more info on the success rates for nerve sparing, a search of these healthunlocked PC web sites would probably be a fruitful first step. Also, I'd ask the prospective surgeon what the attempt and success rate of nerve sparing has been for the surgeries they have done, and whether there are any steps that could be taken to increase the probability of success. For example, based on my experience, it seems like an ultrasound examination prior to surgery might have been worthwhile to detect swelling of the prostate, and possibly postponing surgery on account of that.
Just my thoughts. I was 57. Gleason 7. Five year survival rate similar but not many 15 or 20 year studies. If I could have it removed once and for all that to me seemed the right course of action. Surgery wasn’t so bad and recovery has been progressing as expected. I don’t know I would want to live the rest of my life hoping radiation did the trick. I went with what my doctors advised.
You have time to make your decision. Get second and third opinions from variety of specialists - uro, RO, medical oncologist, This decision WILL change your life.
I chose EBRT, brachytherapy, and ADT prior to, during and post radiation treatment. Pre-treatment numbers: PSA 22, GS 3+4. On AS at Hopkins for7 yrs. Treatment Fall 2018, Winter 2019. PSA now at 0.03 and T @ 129. ADT most difficult for me; awful experience. Some residual side effects from ADT - wt gain, low T (for now, I hope), genital atrophy, and so on.
You are fortunate (and not) to be in the position to have choices. It does seem you have time to research and decide. The decision will also be as much personal feeling/outlook on life.
When I had to make a choice a nurse I was friends with recommended Guide Surviving Prostate Cancer by Dr. Patrick Walsh of Johns Hopkins. I bought the book and read it twice before deciding. Though a bit dated in specifics it has some very good advice on how to make a decision. It is easily available and well worth a good read.
From your numbers it does seem you have some time to research your options. I was diagnosed in 2018 and was on AS until recently. From what you have posted, it seems AS may be on the higher side of low risk. I did not notice if you also gave a PSA history, has it been increasing? I recently attended a webinar on AS presented by the chief of urology at UCSF. They are doing a lot of work on AS. You may want to visit their website if interested or want to include/exclude AS.
One option presented as a posibility for organ confined PCa is focal therapy, as I understand designed to kill parts of the prostate that have been identified with cancer.
When I researched treatments, for the most part side affects were pretty much equal between radiation and surgery (except for the possibility of rectal incontinence with radiation). The one difference was after radiation it was really close to zero but could develop over time. If ED or incontinence did develop over time then there was about 0 chance of reversing it. With surgery the odds were about 100 that you would have ED etc after surgery but about 70% that they could be overcome. For rectal incontinence there is a fairly new development, Space Oar that can be used to reduce the odds. If choosing radiology be sure to ask about it.
You do not mention the area of the country you live in. Depending on location, and insurance coverage, you would be best finding a center of excellence for treatment. The book mentioned provides information on that. When choosing a treatment, having a doctor that is experienced in and has performed several of the procedures chosen will provide the best possible outcomes. He/she should be able to tell you their success (and side affect rate).
Do not get enamored by technology. A lot has been written for example about "robotic surgery". The "robot" does not perform the surgery. Find a doc that has at least 250 surgeries (that seems to be the limit as found by a couple of studies). They get good results with the technique they use. In my case I had an experienced surgeon that happened to do laparoscopic RP. I was in the hospital over night released the next day. No significant blood loss or transfusion needed. PSA has gone to undetectable. So far as expected.
One last thing. You did not mention a significant other. They can be very helpful. My wife was invaluable in focusing my thoughts, asking questions, and providing me things to think about. It was my decision but she helped me focus.
Good luck going forward. And as someone already mentioned, no matter what you decide, you could end up second guessing yourself which is a waste of time. Just keep moving forward.
I think that there is enough data to show that recurrence occurs (something got missed ?) in a fairly significant number of patients - these are the advanced group staged as 4, but many of them were staged 3 and nearly 1/2 progress, eventually.
I think QOL is a big part of the discussion and my bias leans towards the radiation.
When I read of the incontinence in so many, I have to ask myself, could I have avoided this ?
The answer, for some, is yes ....
So one of the advantages of a RALP is they get in there, pull stuff out and actually look at it under a microscope. No grainy images. Definitive data. While in the vicinity they will likely take a few lymph nodes. You get a solid dose of truth/information when they pop it out. There is risk with every decision from now on. You get to pick the side effects that you think will bother you the least. Good luck!
I agree with this. If a pathology report is important to you then choose surgery. For example sometimes your G7 turns out to be a G8 or G9 after you get the pathology report. If this info isn't important to you then consider the alternatives. Other than that side effects are going to vary depending on your doctor, his skill, your genetics and so many other factors. I get annoyed hearing people proclaim "their treatment was best" Well it may be if they are cured and if not then they have regret.
The only randomized study that directly compares radiation therapy (external) with radical prostatectomy showed after 10 years of follow-up no difference in prostate cancer-specific mortality (nejm.org/doi/full/10.1056/N....
I am reading your post 2 years later and going through a decicion similar to yours . How are you / What di you decide ? Will follo your post . Maybe you can look at mine? All my best from Spain.
Hi Mischa - i am doing very well thank you for asking. I decided on radiation. No regrets. Would make the same decision today. PSA still dropping. A few side effects for a few months after treatment that were easily managed. Finding the people on this site - the best thing that ever happened to me, no doubt. lmk if you have any other questions - can always DM me if you prefer.
Good day to you I have just been diagnosed with intermediate prostate cancerT2b I was wondering what type of radiation you had and what was your staging thanks.
Good day to you I have just been diagnosed with intermediate prostate cancerT2b I was wondering what type of radiation you had and what was your staging thanks.
so sorry to hear this rennagade - but you found this site and the people on it who are so helpful and for me, this was the most important thing that happened on my journey. I was T2a and i went with SBRT. Was a breeze and i have no regrets, side effects were very manageable. Treatment was easy, across only 5 days, and i got to listen to my music while i got zapped ;). No regrets. Best of luck with your decision, take time to make it the right for you. my details are in my bio if you wan to see the full story of my cancer.
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Should you have hormone therapy along with radiation?
SBRT process just starting
