Just diagnosed with prostate cancer - Prostate Cancer N...

Prostate Cancer Network

2,718 members1,453 posts

Just diagnosed with prostate cancer

Stevemart
Stevemart

Hi

My name is Steve and I live in New Mexico. I am 62 and was recently diagnosed with prostate cancer with one spot a Gleason 4+3=7 and other spots 3+4 and 3+3. My PSA is relatively low at +/- 5 depending on the test. Full body scans indicate everything is isolated to the prostate.

I am trying to decide what to do. I am leaning towards radiation or perhaps brachytherapy as it seems the survivability is the same as those and surgery and it seems like the side affects are less. One concern my wife in particular has is what to do if it comes back and it appears that with surgery you can do radiation but with radiation there are fewer back up options.

Appreciate any thoughts and guidance from those who have gone through this or are going through this.

Thanks

Steve

25 Replies
oldestnewest
Hidden
Hidden

I went with your wife's argument when I had to decide for myself and moreover I was 8 years older than you. Cure with this disease is more or less an illusion for the patient and a marketing gig for the medical industry. My appreciation is that we have to trade quality of life for survival time. The more we have to trade and wiser management, the more time we can buy. I opted for surgery having in mind 3 years in return. I am 15 months already in and probably will have the next installment before the second anniversary.

Surgery would probably provide the best chance of knocking this out if it is all confined to the prostate. External beam radiation would be the back up treatment.

Before and after surgery you would most likely receive Lupon injections.

leach234
leach234 in reply to Magnus1964

No need for Lupron if contained to the prostate. Don’t know where you get that comment.

Magnus1964
Magnus1964 in reply to leach234

Lupon would be a precaution to kill off any cancer cells on the peripheral tissue.

leach234
leach234 in reply to Magnus1964

If its confined to the prostate you wouldn’t need it and nobody would want to take it unless their PSA was still high after surgery..

I came to the same conclusion re deciding based on side effects and opted for brachy plus external beam. My analysis was not that there were less possible side effects, just different ones. Although there other possible issues frik both radiation and surgery, i made the choice bssed in urinary issues. I chose to risk urinary difficulties as opposed to risking incontinence, i am one year out and do have some urinary difficulties but they are controlled easily so far with one pill a night....One thing to consider is that supposedly radiation related side effects supposedly can show up quite a bit after the fact.. So far ive been lucky..

At your age I would do surgery without hesitation. I was 59 and a Gleason 8 with a PSA of 5.2. Contained to the prostate. Had surgery by a surgeon WHO HAD DONE OVER 2,000 ROBOTIC SURGERIES. 2.5 years later it’s like it never happened. No ED, no incontinence. PSA so far has been <0.02. DO YOUR RESEARCH. SURGEON MAKES THE OUTCOME. PRACTICE MAKES PERFECT.

Also from NM. Take the prostate out especially if it is contained because that will probably be the end of the spread. Four years ago I had regular surgery as well as radiation because cancer had spread to the margins. Now I have ED. PSA climbed again and went on Lupron which is tough on the body.

In your case, I agree with a previous comment, try to find someone to do robotic surgery.

Regarding RP, beware the surgeon's representations for "nerve sparing" to preserve erectile function. From what I've read, the success rate for that is only ~50% and depends on a number of uncontrolled factors. I believe the unlucky half end up needing injections for the rest of their lives in order to achieve an erection capable of intercourse. I think most of us consider that better than nothing, but I suggest weighing those risks and consequences carefully. Better preservation of erectile function is a recognized fundamental advantage for RT, as stated in previous replies from Tall_Allen.

It seems appropriate to ask the surgeon what their personal success rate is for nerve sparing, their honest assessment of the prospects for your case, and, in the event you proceed with RP, any measures that can be taken to improve the probability of success, such as perhaps DRE and/or ultrasound to make sure that the prostate isn't swollen when undertaking removal.

Been almost 2 years since robotic RP. Gleason 3/4, contained in the prostate. Surgeon has done over 2000 procedures. PSA has been .001 since. Have had incontinence issues ever since but manageable (1-2 pads daily. ) pursuing a procedure called Pro-act therapy to address my incontinence issues.

It’s a tough call but I think I did the right thing, but there’s always an urge to second guess yourself. Good luck.

Orlando offers the most experienced US prostate (robotic) surgeon Dr. Vipul Patel . Regrettably, I was a metastatic Gleason 8 and could not take advantage of his expertise, but the men in my support group have (Tampa). All speak highly of him.

I don’t see where anyone addressed your question on next steps if radiation doesn’t provide a cure. I chose SBRT for PC confined to the gland. Completed in 2/19. PSA declining but may not get to nadir for a couple years. I considered it curative with a ten year survival rate equal to RP. I chose it because of quality of life issues and my age of 62 at time of treatment. No incontinence or ED in 18 months. There may be delayed urinary issues but odds are with me. I do not believe the door has closed to additional radiation on recurrence but expect it would preceded by ADT. I urge you to pursue discussion with a Radonc before you commit to RP. You can’t get too many opinions. You also must have a second read of any imaging and biopsies by national experts. Epstein at John’s Hopkins is often mentioned in these strings

with your info you can go on AS....has that been mentioned?

Stevemart
Stevemart in reply to aceace12

No. What is AS? Thanks

Stevemart
Stevemart in reply to Stevemart

Both urologists I saw suggested action primarily due to the 4+3. I see a radiologist this week. Thanks

doc1947g
doc1947g in reply to Stevemart

I am a 4+3, unfavourable intermediate risk and 73 y.o.

I am on Lupron Depot 22.5mg/12 weeks X 2, and I had VMAT hypofractionnated RT 60 Gy/20 fx.

All this treatments started on April 2020 (Lupron) and June 2020 for the VMAT.

I think I did the good choice. Most of the people who go on RP ended-up having to have RT and ADT after a few years.

Just my brother in law, he had RRP and was sure that was the end of it. Surprise, after 6 years they discover metastasies and he had to go for my treatments.

So I save myself of the risks of anaesthesia, the incontinence and the impotence.

So far I don't have too much problems.

active surveillance

Hi Steve, I recommend that you do a good deal of research on all your options before you decide. Also carefully weigh up the potential side effects and quality of life issues associated with each option. What one person can comfortably live with, others couldn’t. It’s an individual choice, there’s no right or wrong option. I’m from Ireland so the medical system here is different to what’s available to you. If you can, consult with a urologist (preferably one with experience in prostate cancer) and a radiation oncologist and indeed a medical oncologist before you make your decision. Expect the urologist to recommend surgery and the radiation oncologist to recommend radiation .... it’s their field of experience after all. But make your own decision. I’m no expert so can’t make a recommendation other than get as much information as you can digest, and then discuss with experienced doctors. Whatever decision you come to is the only one that you can make. There are plenty of experienced prostate cancer men on these forums with plenty of helpful suggestions. Make the decisions that you can live with, you can’t know the outcome of any treatment option in advance.

Oh and be kind to yourself, you didn’t ask for this to happen.

Hugh

Hi Steve.

I know that after awhile you can get so many opinions you are left more confused than ever, but nonetheless, here's mine: Get yourself to M D Anderson in Houston where you'll see the most highly trained specialists who can lay everything out for you and leave you with confidence that you are making the right decision. How I wish I had consulted them before I kind of panicked and went with my local doctors. And don't mis-read me, my local docs are great, but it's just not the same as talking with someone who deals with this day in and day out.

I wish you the best of luck going forward.

Bob

Take your time and explore all your options. I guess the "bonus" of surgery is you get a definitive answer about your cancer, with a pathology report. That is not important to everyone. My husband opted for a RP (robotic prostatectomy) but he did not get a good surgical report even though ALL his pre-surgical imaging pointed to it all being contained. It was not.

He just finished 35 sessions of radiation to the prostate bed one yr after surgery.

There are of course some people who are cured with surgery/radiation but one needs to always have a back-up plan if the cancer comes back.

Def speak to a radiation oncologist, do some reading and weigh the pros and cons. What would that back up plan look like for you if the cancer returned?

Hi, Steve. I am 3 years older than you and had low dose brachytherapy about 18 months ago, following a biopsy that gave a similar Gleason score to yours. It was my choice (the alternative offered was RP) but was the option gently recommended by the oncologist. The implant procedure went fine, but you have to get your head around the idea that it's just the start of the treatment. The radiation will carry on working for many months after the implants go in. I take tamsulosin to keep my peeing well managed (I found I was getting up at night too much and the drug helps a bit). But I am now experiencing some erectile disfunction. It could be the tamsulosin causing that. Anyway, I still believe I made the right choice: these treatments all have pros and cons. If there is a prostate Cancer support group near you, join it. I have access to one locally, here in the UK, and it's great. And if you do have brachytherapy, ask about them using a kind of spacer gel to protect your rectum from the radiation. You can get some bowel problems appearing months after the brachy procedure. Good luck!

Stevemart
Stevemart in reply to Courgetter

Thanks much and good luck

I had similar numbers but rushed into RP at a major cancer hospital with a very qualified surgeon. He said he could detect cancer outside my prostate. He removed all my nerves. I do have NO margins and a very low PSA, but ended up incontinent and impotent. no possibility of erections and wearing pads. 2 years later, I have a penile implant and an artificial sphincter at a cost to US tax payers of $150,000. I have erections and dry pants but it it not the same. Explore EVERYTHING except surgery before you decide.

Steve, take your time , explore your options , then make your own decision obviously. We are all different physically, mentally and at different life-stages. I was age 68, somewhat similar #’s to you ( Gleason 4+3, and 8 of 12 cores over 35% penetrated ) and just starting to bulge into/stretch through capsule(s). I had maximum targeted radiation and 6 months hormone therapy ( Firmagon ), It seems to have done the trick for me with my PSA now about .27, a year and a half after treatment ended. I do take a Flomax pill ( Tamulosin ) in the AM and also at bedtime to aid my ability to consistently and completely empty my bladder. Again, there are NO absolute correct answers or recommendations , other than take your time, do your homework , and then make the decision you feel is best for you. All Best Wishes, judg69

Hi Steve, I also live in NM. Diagnosed at 63 with Gleason 7(4+3), 10 out of 12 cores positive, localized with extraprostatic extension. My local urologist recommended radiation and I met with a local radiologist who I think is very competent. I bought some PPO insurance and sought out opinions from DR. Klein at the Cleveland Clinic, Dr. Eastham at Sloan Kettering in NY, both surgeons and both recommended surgery. Also had a consultation with an MO and a RO at Sloan Kettering. A few months later traveled to MD Anderson for another surgical consultation concerning a possible place in a clinical trial.

The most important piece of information these travels brought me was in the pathology report done by Sloan Kettering. The pathologist noted that my cancer had an intraductal characteristic. This changed my prognosis. Sloan Kettering has an evaluation tool they call a nomogram. It's a questionnaire that takes your information and places it in the context of an experiential knowledge base gleaned from 10,000 previous PCa patients. With the one change of information being the addition of "intraductal", the statistics on 5 year non recurrence with either radiation or surgery flipped. Gleason grade 7(4+3) without the intraductal would be about a 30% chance of recurrence within 5 years. With the intraductal characteristic it becomes a 70+ % chance of recurrence within 5 years. And having a top notch second opinion on pathology doesn't require any travel. All of the major cancer centers will perform this for a reasonable fee. I've read that Johns Hopkins is very well respected for their pathology expertise. I would get this done as soon as you can.

I became an instant vegan, researched myriad supplements and alternative treatments. Some have been effective, some not. I remember when I was diagnosed, the doctor said that since the efficacy of surgery and radiation were similar, my decision would be which modality I was most comfortable with. Welcome to the world of cancer, a disease with an incompletely understood etiology and a vast database of statistical knowledge that may or may not correspond to your particular case. I concur with those recommending that you take your time and barring a singular medical eventuality, not be rushed into a decision.

You may also like...