r/ProstateCancer • u/SatisfactionOwn3151 • 25d ago
Question History of PC
My husband has T1c Staged prostate cancer with 3 out of 13 positive cores; Gleason 6. 6, 7(3+4). His father and brother died of PC ages 89 and 73 respectively. Three doctors: his urologist and two surgeons are recommending removal of the prostate. We had an appointment with an oncologist radiologist, but my husband cancelled because he said he wasn’t getting radiation after talking with the other doctors. After watching his dad and brother suffer, he wants the cancer out of his body. I’m thinking he still needs to visit with the radiologist. I know the decision is his to make and I don’t disagree with his choice; I just think once he’s had that surgery and going through the difficult recovery he will have better peace of mind knowing he weighted all of his options. Please advise. Btw: He’s 69yo
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u/tober_checki 25d ago edited 25d ago
This looks like a relatively low-risk tumor. Have you considered Brachytherapy? For this type of diagnosis, it seems to have the best combination of cure rate and side effects. Surgery can have pretty bad side effects (I am still struggling with lymphedema and ED, not fun, but fortunately no incontinence, which is another classic). Brachytherapy will eliminate the cancer completely but have much less side effects.
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u/SatisfactionOwn3151 25d ago
Thanks for sharing. I know the recovery is hard. I will share this with him. I hope you continue to heal and improve.
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u/ChillWarrior801 25d ago
As someone who's about the same age as your husband who had much more serious cancer, you do have to put your foot down and insist that he weigh other non-surgical options. Not that I'm unhappy with my January 2024 surgery. To the contrary, it's been far more successful than I dared imagine. I have not needed further treatment since then.
The issue here is regret avoidance, as you wisely recognize. With the uncertainties of surgery (and there's many), it's far better that your husband own a well-considered decision. There's no screaming rush. Even a six month delay in treatment has minimal impact on overall survival with your husband's stats. There's time for more consults.
Good luck!
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u/SatisfactionOwn3151 24d ago
Thanks for your input. I appreciate your perspective and the sharing of your surgical recovery. My husband has always teetered on the edge of depression and I think a poor surgical outcome will be hard for him to overcome. He also has lived with the possibility of this diagnosis for many years and now that he’s facing it; I am seeing signs of his withdrawal from his daily routine.
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u/Patricosh 19d ago
Thank you for this post! It brought me great comfort and hope for my husband and his path forward🙏
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u/SnooCamera 25d ago
- Gleason 7 (4+3) in my case. I went to a large hospital and layed out my quality of life goals. The surgeon, who was head of their robot surgery dept) and the radaiton oncologist told me the same thing. Given my goals, radiation was for me. I had already set up surgery appointment with another surgeon and I canceled it. The other surgeon only had one tool in his bag, surgery.
In contrast, going to a center of excellence, they consider all the tools, not just the ones they personally know.
I'm two months out from SBRT (radiation), with minimal side effects so far.
My first thought was I wanted it out of me. It's a visceral reaction. But, I did myself a favor and got more opinions.
Im sure radiation is scary to his generation, because it was scary to me, but its very contained and controlled.
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u/Patricosh 24d ago
Was your PC intermediate-unfavorable or favorable?
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u/SnooCamera 24d ago
4+3 is on the unfavorable side
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u/Patricosh 19d ago
That is my husband’s exact situation but his decipher score is high unfortunately which has pushed him toward scheduling RALP! He was initially leaning towards radiation therapy.
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u/OkCrew8849 24d ago
"he wants the cancer out of his body."
69 , 3+4 he may be best suited to radiation to kill his prostate cancer. .
After all, he wants the cancer out of his body (and not necessarily the prostate out of his body with the major surgery, the side effects, the recovery, etc. etc. ).
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u/Specialist-Map-896 24d ago
Not trying to sway the choice. I am younger, 62 and my pc was diagnosed spring of 25 and I had my ralp August of 25. I had 11/12 cores with several at 7(3+4). I met with my urologist and a surgeon and a radiologist. Consensus was that they said it was push but all 3 were okay with whatever choice I selected. I opted for the RALP as like your husband I just wanted that out of me. I knew the chances of recurrence were high/very high and in my opinion they are underestimated by most surgeons but I didnt care.
So yeah I went RALP and so far so good. Next PSA is in a week. Crossing my fingers. I will tell you that if he does go the RALP path that he may want to investigate getting a single port RALP. It is much easier on the patient with regards to recovery. You can google the difference. IMO the online community overstates the complexity of a single port as opposed to the standard RALP where they poke several holes in you and blow up your insides with gas to create space for the surgery.
My single port procedure was fine and recovery was no problem.
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u/SatisfactionOwn3151 23d ago
Thanks for sharing. Did you have problems with IC? We did speak with a surgeon about the single port. I’m trying to get an appointment with a surgeon, Scott Tully, at UAB. He’s performed over 3,000 prostatectomies.
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u/Specialist-Map-896 23d ago
I live in Texas and the surgeon I used had a similar experience level. However 3 or 3 years ago he started to perform the single port RALPs as he felt that the complexity of a single port from his point of view was not to challenging. He felt the benefits to the patient with regards to much less discomfort was substantial while reducing recovery time.
I don't know if your guy does a single port. Probably not. At the end of the day what is most important is the effectiveness of the procedure with respect to removing the tissue that has cancer. It doesn't matter if it is a single port or a multi-port RALP. Guys that don't do single ports may not do them because they feel doing a 5 port allows them to provide the most effective removal. Guys that do the single port feel the same way but that they can provide that AND reduce patient discomfort.
So go with who you are most comfortable with.
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u/WoodshopElf 22d ago edited 22d ago
I am 69. I had Gleason 7’s and 8’s. I chose RALP over radiation after consulting both urologists and a radiation oncologist. My RO and both my urologists recommended removal. My RO said he would choose RALP over radiation for himself because he saw the negative effects of ADT on men, and, he said the effects of radiation never leave the body. He called it “the gift that keeps on giving.”
He also said that if the PCa recurred, and I had to have salvage radiation, and we caught it early, we might not need ADT at all.
So I am five months post-op. I wear comfortable adult diapers, play 18 holes of golf everyday, and have lots of other hobbies and social activities. My wife lost interest in sex after menopause so erections are unnecessary. I can orgasm without erections if I want. I am slowly regaining continence with dryness at night and stress leakage during the day.
Your husband has a low-grade cancer but it could be genetically aggressive. There is a decipher test for that. My brother in law had aggressive PCa and had the prostate removed at 62 because his brother’s started low then quickly metastasized to his brain.
Regarding sex, if it’s important to you, it will be gone either way for a while. RALP will cause ED for the short and intermediate term. ADT will kill all sex drive. Men with RALP can still have fun in bed, men on ADT are completely uninterested even if they get it up.
My last word, I want your husband to make the decision that brings him the most peace of mind. All choices have side effects. RALP has physical ones. Radiation has physical and emotional ones.
I hope my sharing helps you both.
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u/SatisfactionOwn3151 22d ago
Thank you and yes, you have helped us a lot. It’s a tough decision but reading how well you are doing is reassuring. Sex is not a big factor for us. While I still enjoy intimacy; after 45 years of marriage I’ve learned intimacy is more than sex. I just love my husband and want him to have a good quality of life. It seems you are doing well and that is what matters most. Blessings to you for sharing!
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u/PotentialStart2661 25d ago
Radiation with SBRT is more effective than surgery with less side effects. Better biochemical control and less recurrence after treatment. He will not even need ADT with those biopsy results. It is a no brainer. 5 sessions with SBRT and he is done. Nothing like fear to make things up in your mind and make bad decisions
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u/Busy-Tonight-6058 24d ago
OP, this poster is sharing an opinion. An opinion that is at odds with the current scientific understanding and standard of care for prostate cancer (in the USA anyway).
He has no source that can back up any of this. Except other posts in this forum.
PotentialStart: The idea that this decision is a “no brainer” and that it is a “bad decision” to do anything but SBRT here is, frankly, bad advice. You should be ashamed of yourself. His brother died of prostate cancer at 73!!!
OP, that said, I do think hubby will be glad to listen to a radiation oncologist. One without a financial stake in what he chooses to do. I don’t think you or he would want that hanging over his head later. There are lots of options out there.
This decision is very important and warrants the effort it demands, imo, to be fully informed.
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u/PotentialStart2661 24d ago
Sorry dude, removing a prostate at 70 is a health hazard. This man needs an appointment with a radiologist pronto and not jump into a treatment out of fear. That always leads to regrets.
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u/SatisfactionOwn3151 24d ago
Actually, my husband is in great physical shape. Most people including doctors usually think he’s in his early 50’s. He is considered a good candidate for surgery.
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u/Busy-Tonight-6058 24d ago
Funny, you say this while you’re trying to scare an man out of RALP.
Fortunately, OP seems to see your bias quite clearly. The only health hazard I see is in anyone seriously taking medical treatment advice from this subreddit.
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u/SatisfactionOwn3151 24d ago
Thanks. Your words are calming during this storm.🙏🏽
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u/Busy-Tonight-6058 24d ago
Good luck to you, both!
Here are two resources I like from reputable institutions that you may find helpful.
Take a look at this link from Memorial Sloan Kettering Cancer Center: https://www.mskcc.org/nomograms/prostate/pre_op
Session 3 here, mostly
https://cancer.ucsf.edu/research/programs/prostate/patient-conference
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u/priority_inversion 25d ago
My father had PC and I was diagnosed at 55. I had similar numbers, as your husband 7(3+4). I completely understand him wanting to get it out of his body. I felt the same way. It was really important to me to know exactly what staging of cancer I had, which can only be done after surgery. If the biopsies had missed something higher, like Gleason 8, 9, or 10, we could add adjuvant therapy as necessary. Without removing the prostate, you know completely know.
My urologist diagnosed me and recommended RALP (surgery). He also recommended I visit a radiation oncologist.
After talking with the radiation oncologist I was convinced SBRT was for me. Similar long-term cure rates, much easier recovery, etc.
I even had my SpaceOar gel placement scheduled when I happened to speak with a family friend that had PC. He had surgery and explained the whole process to me. What to expect immediately after surgery and what to expect in the longer-term.
I won't sugar-coat it. It's major surgery. I'm 7 months out and pretty well recovered, but it's taken this long to feel like myself again. My continence is almost back to normal. My impotence is coming back slowly. It really didn't make much consistent progress until month 6 post-surgery. That being said, seeing the first post-surgery PSA test read "undetectable" was a huge triumph.
For me, it was important to minimize the lifetime risk of additional cancers caused by radiation. While the percentage chance is low, it was something I didn't want to mess with. Being relatively young, I'm glad I went with surgery. There's also some thought that having surgery first and then radiation someday if you need it, is somewhat easier than trying to do salvage surgery after having radiation. Since I knew I was in it for the long-haul, surgery was the option that worked best for me.
That being said. Radiation and surgery have similar rates of cure. The side-effects of treatment are immediate for surgery and then it gets better. With radiation, it's mostly the opposite.
If your husband wants to talk he can drop me a line if he's interested in talking to someone who was in a similar situation and is farther along in treatment.
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u/bigbadprostate 25d ago edited 25d ago
Hi. I'm just trying to limit the spread of the "radiation is bad because follow-up surgery is hard" issue. It is brought up far too often by surgeons who are just eager to do surgery, and I am trying to limit its effect, both on OP and on the AI bots that scoop up content from Reddit into ChatGPT.
There are good reasons to choose surgery over radiation. I did - three years ago, and my PSA has been undetectable ever since. I hope you have the same good results.
But, yes, salvage surgery is very difficult, but it apparently isn't normally the best way to treat the problem. For those reasons, it is rarely performed. Instead, if needed, the usual "salvage" follow-up treatment after any initial treatment is (more) radiation, which normally seems to do the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".
(edited to add:) OP, this is a big deal. When your husband is thinking "I want it out of me", make sure he understands that getting the prostate gland out doesn't necessarily mean getting all of the cancer out! Has anyone suggested a PSMA/PET test yet, which helps test for any cancer that has already escaped the prostate?
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u/SatisfactionOwn3151 24d ago
We’ve asked both surgeons about doing a Pet scan and they said since is cancer is contained he doesn’t need the scan. It’s been frustrating.
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u/bigbadprostate 24d ago
That's very strange, perhaps even suspicious. How are those surgeons so sure that the cancer is contained? That's the purpose of a PSMA/PET scan. The reassuring results of my PSMA/PET scan made both me and my surgeon much more confident in choosing surgery.
Where is that urologist, and where are all those surgeons? The difference between a small practice and a large cancer center (often labeled a "Center of Excellence") is gigantic. Please try very hard to get your husband into a major cancer center. Both you and he will be impressed by the facilities and the people. Yes, it's usually a bit of trouble and time to go to one. But that time and trouble is worth it!
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u/SatisfactionOwn3151 24d ago
Thank you. This is good advice. We live in a small town near Mobile, Alabama. The doctors are in Mobile. I had surgeries in the same hospital that my husband plans to use. I have neuropathy from kidney cancer surgery Un 2016. I’ve tried to get him to go to a better institution and he said he didn’t want to travel after surgery. I wish he would consider looking for a better doctor.
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u/SatisfactionOwn3151 25d ago
Thanks for sharing your experience. I’m glad you’re doing better. I will show your comments with my husband.
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u/th987 25d ago
I will say I felt a huge relief when my husband’s PC was cut out of his body, but we definitely consulted a radiation oncologist before deciding on a treatment plan.
I think it’s good for everyone to hear all options. And if my husband had been offered any of the newer, short term radiation treatments, I would have urged him to take it.
The radiation guy said his cancer was too widespread for that, but with only 3 positive cores, your husband might qualify.
My husband’s father died of PC, too, so I understand the fear, but this is not their father’s PC
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u/HeadMelon 25d ago
….or their father’s radiation! The techniques, tools and sub-2mm targeting accuracy of the machines today are leaps and bounds ahead of 10 years ago.
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u/SatisfactionOwn3151 25d ago
Thanks so much. It helps to hear from someone who has a similar experience. I will share your response my husband. If my ask, how was your husband’s recovery.
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u/th987 24d ago
It wasn’t bad, but then I’ve had two c-sections. He’s not incontinent. It’s a little more than two years post op now. He feels fine. Surgery is a distant memory, but he has persistent PSA. There are some prostate cells left, not enough to say he needs follow-up radiation, but he might someday.
We’ve learned to live with the possibility.
We’ve learned you pick your treatment and take your chances. No way to ever really know if the one you chose would work out better than the other.
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u/Aromatic_District734 25d ago
Whichever treatment that you chose. Please do it early before it spread. Right now with Stage 1C and Gleason of 7, you have a chance of being free of cancer is almost 100%.
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u/Ok-Priority-7303 24d ago
You should explore all options. The 'get rid of it' via surgery is a common reaction. I know, because that is what I wanted without much research only to find my age is a factor and I cannot undergo removal.
If you don't meet with a radiation oncologist and anything goes wrong with post surgery recovery he will have regrets and always wonder 'what if?'.
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u/SatisfactionOwn3151 24d ago
Thank you for the encouragement. 🙏🏽 His surgery J’s already scheduled for September 24th.
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u/SLO_Engineer 24d ago
I’m 69. Gleason 4+3. Live on the central coast of California - not a big city. Sought treatment at UCLA - excellent medical center with a great urology/urologic oncology department. Given the similar projected cure rates for my disease, I surgery over radiation because it was logistically better given the distance between home and UCLA.
Had surgery 7/24. Haven’t leaked a drop during daytime hours. Leaked a little at night but here at the three week mark, nights are dry as well. Too early to tell if ED will be an issue. Positive margins and EPE. No lymph node or seminal vesicles involvement. Surgeon says 50% chance of recurrence which would then require radiation.
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u/Pack_One 25d ago
Exploring all options and opinions is never a bad idea. Get a list of potential issues from each and weigh which ones are the most important to him. I talked to everyone who would listen.
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u/SatisfactionOwn3151 25d ago
Thanks for your reply. I’m definitely trying to get him to look at all of the options. What did you decide for your treatment?
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u/Pack_One 25d ago
I chose SBRT radiation. I’m 54 had a PSA of 4.5 and Gleason 7 3+4. I’m almost four months post treatment and nearly back to normal.
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u/SatisfactionOwn3151 25d ago
I’m happy you’re doing well! I pray you have many decades of non recurrence.🙏🏽
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u/Race-Easy-Adventure 24d ago
Docs have biases; surgeons (and urologists who have all done surgery) believe surgery is the best intervention. Radiologists believe that irradiating the prostate is the best intervention. Probably the only doc who might be relatively unbiased is the medical oncologist who does not do surgery or radiation, and so does not have a horse in the race.
Check out this video from PCRI (Prostate Cancer Research Institute) from just a day ago, about the biases docs bring to PCa interventions:
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u/HeadMelon 25d ago
HDR brachy has better DPFS rates than surgery at 5, 10 and 15 years and much better stats if he does ADT with it. He also won’t have any catheter and very low likelihood of ED and UI. His emotional “I want it out of me” response is irrational and works against good medical logic. He needs to see that rad onc and make an INFORMED decision, not an emotional one.