Recent biopsy showed Gleeson score of 6/6/7(4+3) and 8 (4+4) across the midsection of the prostate. Bone scan and CT scan were both negative for spread. After speaking to my urologist he indicated that due to my age robotic prostatectomy surgery was the best option as radiation and then surgery, should I need it later, is rough and often doesn't come out well for most. My research shows that this is true.
My question to the forum is:
Is there anyone is my age range with similar Gleeson scores that opted for radiation instead of surgery. If so, why?
Any and all advice is appreciated.
Cheers,
Tom
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Tom19
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There is a order of treatments Radio therapy BEFORE Surgery is a No No scarring from the radiation will hinder procedures Opt for surgery first then you have a pallette of treatments available to you
Tom, I am very interested in whether you choose surgery. Although I am 65, my doctor is recommending surgery because I am fortunate to have overall good health and longevity (90 - 95) runs in my family. I have another consult with radiologist before I make a final decision but have also considered that surgery made provide better options in the future should PCa return. Good luck and I wish you all the best.
gamma909 After speaking to several doctors, including my primary, I've opted for surgery. All of them indicated that radiation just was not a good option for me due to the Gleeson scores that I came up with. I'll keep people posted on how things go after the surgery.
Thanks Tom. Since my prior post, I met with rad onc to see what they'd recommend and then met with med onc. The med onc has been very helpful in that he's focused on cancer not on trying to convince me one treatment is superior to another. He set me up with mpMRI which has given me a more refined diagnosis including possible extracapsular extension (which means I most likely cannot spare nerves on left side). I will meet with another surgeon (just so I have something to compare to 1st surgeon) and then circle back with med onc for a decision. I am fairly certain I will go with surgery unless the med onc gives me a recommendation otherwise. Like you, I've put together all my pros/cons. Best of luck with the surgery and with your health.
Hi Tom,similar age, similar psa and yes robotic surgery was recommended because I had many years to live and it was contained. I liked the idea of being out of the hospital in a day ,which was the case,and the thought of 9, yes ,9 weeks of radiation therapy did not appeal to me. What really convinced be though was an actual radiologisttelling me she would be there to save my life in the future but she recommended robotic first. Everything went well with surgery,totally continent within 4 months,there still is ed issues but I gave myself a year before I start regretting the surgery--I have 5 months to go.
I see cards post here and I want to tell you a similar story. Of course time will say if I had made the better decision.
I had a Gleason 8, contained tumor.
It is 3 months after surgery and I am almost continent. For 2 weeks that I am not wearing any pad till just before dinner. Most of the times no leakages anymore. For ED I have to be more patient. Already sensing some small improvements though. Orgasms are there and definitely not worse.
During decision time I also checked on a radiologist specialist and like cards I was advised to go through surgery route.
Paulo1968 Continence is my biggest concern based upon my research. I'm glad to see that it only took you three months and you're almost good as new. It gives me hope!
@cards Thanks for the feedback, I truly appreciate the insight. I have my meeting with the surgeon on Thursday of this coming week to discuss the procedure and timing. I'll keep you posted.
I'm in a somewhat similar situation. I just turned 47 and have a 6.1 PSA. After the biopsy, I was diagnosed with a 3+3=6 with 2 positive cores (10% and 50%) last month. Besides my urologist, I have consulted with a radiation oncologist and a medical oncologist with a specialty in genitourinary oncology, specifically prostate cancer.
Both the radiation oncologist and medical oncologist recommend I do robotic prostatectomy. They advised against active surveillance b/c of my age. They said due to my age, it's only a matter of when (not if) I have to address this, so it's better to do it while I'm relatively healthy and young. They also mentioned how doing surgery later down the line (after radiation) is something that's not normally practiced by most docs. They both said if I were 20 years older, they'd recommend radiation, but the concern is my age and the lack of data on the long term effects of radiation for people who may live 40 more years. For what it's worth, the radiation oncologist recommended HDR brachytherapy as his 2nd choice (behind surgery), and the oncologist recommended proton beam as his 2nd choice.
At this point, I'm leaning towards getting robotic prostatectomy. I have another appointment scheduled in early August with a doctor at NIH. They are going to take another PSA along with a DRE and an MRI. Based on the MRI, they may do a targeted biopsy. I'm curious to see what this doctor will say, but at this point, unless he can give me a compelling reason to do active surveillance, my plan is to do the prostatectomy within the next few months. The key for me is to just find the right doctor as I've read that can make a huge difference regarding your potential side effects.
Hi Yolli71, Not sure where you live but Dr. Hu at NY Presbyterian in Manhattan was highly recommended to me by 2 other urologists to me, one of which is a family friend whom I trust greatly. I am 51, healthy and fit and my surgery is scheduled in the next couple weeks. However, I still feel a little anxious around making this decision.
yolli71 That is pretty much what the doctors told me. My age was a big contributing factor in getting the surgery due to the lack of information on the long term effects of the radiation. Best of luck with your progress forward, keep us posted.
First of all not an easy choice. I was diagnosed Stage 3, Gleason 8 (4+4) PSA 12 in March of 2016. I was given 3 choice available options. At 62 (no signs other then big fatigue) I was like all of us shocked in my diagnosis. June 2016 had robotic RP. My continence was almost above my sexual worry/loss. Sexually my worry was like yours and all others here. A decision of living trumped both the continence and sexual loss.
IF you decide RP start the KEGEL exercise. Start these NOW. Look them up if you don't know how to do them. (( I want to say that many men don't know what Kegel is. Many women do them. I have "used" it (done it) for years. It was like the on/off switch to controlled ejaculation and great longevity . My point is not sexual here but what I feel it did (has done) for me since I was doing them.)) I came out of RP at 8pm a -5.5 hour operation. Walked the floor of the hospital at midnight. Went home at noon the next day with the colonoscopy bag. 7 days later my oncologist pulled the catheter and I waited. No dripping. Wore my pad home and waited.. no dripping. Very hard day trying to "push" again to urinate but was able to pee. That night I went to bed with underwear on. That's it. Never have had an issue since. I can tell you the "feeling" is different after RP. When you need to go...you go. Controlling my intake of liquid helps there. I can still stop and start my urine at the toilet. Able to since my "8th day".
Also the sparing of my sexual nerves by my oncologist VERY good. "Watching" my other half , being touched and "handled" I am able to get a 1/2 to 3/4 erection. With pill 90% plus hard for penetration- with dry ejaculation.
My PSA is called "PSA persistent". So after the RP my PSA rose twice no stopping . I went into radiation with total continence 3 months later. What ever your continence is going into radiation ( if radiation is required) it "seals" at that level you have achieved. I went into radiation with .042 PSA and came out with .080 (39 sessions later). So with all the worry back then ,now my doubling is 3.9 months since June 2016 and I'm currently at 1.350 PSA as of this month. Axumin scan this month and HT starting soon. So in the end all the sexual worry not so much now... living and life is (with continence thankfully).
Thanks for the post MichaelDD ! It really helps knowing I'm not alone in making these hard choices. Based upon what you and everyone else has posted I'll be starting my kegel exercises quick!
Yes you will have one....but NOT like the one you have in the hospital! It's smaller and "more travel" like. They'll ask you to wear something like loose-fitting sweatpants to go home . Also was able to wear my boxers. Loose-fitting around-the-waist (because of the surgery) but also you will be able to tie/velcro the colonoscopy bag to the side of your leg . Tube was easily "maneuverable" to fit under boxers and in sweats. My loose sweats covered the whole setup. The first day and night there's an awkwardness to having it. A period of adjustment. But then you get used to it being there for the days on you will need it. Mine came out in 7 days. Some discomfort in learning to have a bowel movement while sitting with the bag. You are actually urinating in the bag but having a bowel movement in the toilet. Kind of a "juggling act"! Also there can be some discomfort at the tip of the penis over a number of days the tube is in. Be sure to ask your doctor what can be put there as a relief against any strafing.
I think once I may have gone to the store while I had this bag. But primarily it was me staying at the house and resting. I did do some walking outside and no issues there. You'll do this!
Likely not a colonoscopy bag, but a catheter (Foley) from the bladder, out the penis to a collection bag (strapped to leg or larger bedside bag). Stays in a week or so for the urethra reconnection to heal.
Although I am older than you thus I have more options, please consider a second opinion. I just got one at UCLA and it makes a difference. Just a suggestion.
Hi Tom, I am 51, and pretty fit and healthy. During an annual routine check-up, I learned that I had an elevated PSA of 6.9, which led to a urologist, biopsy, MRI (3+4). Because of the location of one of the 2 tumors, all specialists I got 2nd opinions from are recommending surgery. They said mainly because surgery gives me 2 options. I.e.- if I do radiation and it doesn't kill all cancer, then the surgery option is much more difficult to recover from. However, if I have the surgery and still needed treatment, I will have the radiation option as a back-up. Has anyone else ever had a similar response to a treatment plan? I am scheduled to do the surgery in a couple weeks, and I really want to be sure this is my best option to get treatment and eventually resume a normal sex life without incontinence if possible.
Dreamweaverman Thanks for your feedback. That's pretty much what I was told as well. Surgery first and then radiation as back-up if needed. Surgery is going to be scheduled next week so I'll post what the doctor says here on the forum.
Good luck in your surgery!!! I said above that was my option pick.. I have "persistent" PSA. 39 sessions of radiation 3 months after my surgery. My PSA never stopped. I was Gleason 8 (4+4). PSA was 12 when detected. First PSA test after my surgery was . 024. Two months later it was . 042. Then I did my 39 sessions of radiation. Came out of that and I was . 080. That was less than 2 years ago and now I'm back to 1. 350. I have a fast doubling rate of 3. 9 months. I will be doing the Axumin scan test this month. By years in I will be on hormonal therapy.
Had my surgery last week. At home convalescing. Pain is moderate and controlled with Tylenol and Tramadol. Worst part is the foley which i have to wear until Thursday when I go in for my follow up. So far so good...we'll see if that lasts.
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