My husband was diagnosed with PC 1st of June from a routine yearly health check and advised on 1st opinion & second to go for RP. T3b. Psa 11.6, age 53, 3+4= 7 Gleeson. Surgeon said good Nerve sparing on one side and a little less on the other. He had surgery 3 days ago and it went better than he expected.
Where do I start on getting my house in order to help him take the right vitamins, eat the right food etc, I’m now getting my head around this PC rarely being curable and intend to keep my ears & eyes wide open going forward on reality. In 2 wks catheter will be removed and then the horrible waiting game begins of psa tests.
So, what should he eat/not eat or drink?
Supplements?
I’m learning testosterone feeds cancer is this true?
So much to learn!
I’d be grateful for any advice from you guys.
Hi from Ireland!
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dublin1717
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This sounds like a curable cancer. Not “Advanced Prostate Cancer”. Wish you the best and I imagine your prognosis is good. We are, mostly, a group of Stage 4 metastatic PCa patients. There is no cure for us, yet!
" I’m now getting my head around this PC rarely being curable " This is not true. His type of prostate cancer is called "intermediate risk," and is most often cured by the therapy he already had. If you want the statistics on how often it's cured, fill out this form for him:
Maybe you got that impression because you are looking at a forum for men who have been diagnosed with advanced prostate cancer - cancer that has spread to distant places - unlike your husband's case. You may find men in a more similar situation to your husband at this site:
"So, what should he eat/not eat or drink? Supplements?" There isn't any evidence that anything he eats, drinks or swallows will make one bit of difference. However, it might make you feel better because you are doing something rather than nothing. I'm sure you will find all kinds of things on the internet. Just stay away from known poisons.
"I’m learning testosterone feeds cancer is this true?" Not for him, no. Androgen deprivation (chemically removing all testosterone) adds nothing to the outcomes of RP, and is never used.
There is something he should do. When the catheter comes out, he should begin on a program of penile rehabilitation. Begun soon enough, it may prevent penile shrinkage and help restore his erectile function. Mostly, he will take measures to restore blood flow to his penile tissues. Rehab includes using a penis pump everyday, occasional ED meds (when his continence is restored he can take the low-dose pills more often), and the occasional use of trimix injections.
The NCCN risk level is assigned before treatment. If the T3b were found before his RP (cT3b), he would have been classified as "high risk." You are right that pT3b is an adverse risk finding (other adverse findings that may be determined by post-RP pathology are increased Gleason score, EPE, or postitive margins) , but adverse pathology, in itself, is not reason to start adjuvant treatment - you have to wait for the 3-month uPSA. They removed the seminal vesicles.
We don’t have a pathology report yet so I don’t know if seminal vessels were removed. I know that nerve sparing was successful on one side and a little on the other.
Good to hear. I was T3b and am sensitive to the higher risk of negative outcomes. I had an RP, followed by SRT and just learned this week that SRT failed. Not uncommon but I'm not looking forward to further ADT.
And I was cT2b after biopsy and pT3b after RP. I read your T3b as pathological staging, as I think most SVI is found after RP pathology and not after biopsy.
Thank you for wishing me success with ADT. I feel better now. There are times when PSA starts to rise after a treatment and I'm bummed out a few days (last week), then I see the many people on this site who were diagnosed at stage IV with extensive mets and have bravely faced it and lived many years (decades) with such positive attitudes. Their stories inspire me and keep me coming back often.
Yes of course You feel disheartened & scared but it’s true there are so many good people sharing stories of success. It’s not going to be easy but life is worth fighting for. Keep yours going, keep on top of your docs and live. ☘️💚
Three consecutive rising PSAs at 3-month intervals (from 2.5 years of undetectable PSA post SRT). The first 6 months of the 2.5 years I was on Lupron. I should have said the attempt was non curative. Plan is to watch PSA and go from there. A 'newer' scan is likely in the plan once PSA reaches a level where I'll start ADT.
And my husband really benefited with a pelvic floor physiotherapist .They can show he how to work the pelvic floor muscles correctly - kegels etc. His doctor is amazed at his recovery.
TA's advice is good but I would give healing a few months and see how the erection thing is coming along on its own..Some guys recover with little help..If help is needed, I would try the ED pills (Viagra) first..But step one is regaining continence first..
His after surgery pathology, did he have "clean margins" ?? a good predictor of future success....Best of luck to you...
I’m not sure yet. In Ireland they aren’t very quick to say this early. I might ring hospital tomorrow to see if pathology is done yet. He’s back in on 27th july for results. Hard to wait until then.
Low dose cialis should promote penile rehabilitation. Nocturnal erections keep the equipment healthy.
Before catheter removal make absolute certain that he will receive a cystography or cystogram (x-ray) to verify that the anastomosis is tight (leak proof). Time alone is NOT a guarantee for the latter. There is a small percentage of risk involved there and if not completely healed big trouble lies ahead for him. I had three and took me a month before the catheter was removed safely.
Welcome Dublin. My grandfather James Ambrose Hearn came over from Dublin . We welcome the newly dxed. We have all been there . It’s horribly at the onset . The fact that he can possible be done with pc after he heals is real. The hope is that the surgeon got it all. Now just relief his ills and get him to recovery . Diet and exercise are crucial in my opinion. Some men don’t belief in alt med or nutrition for APC . I do . Basically cut all bad food out. Processed and added sugar . Yes’m, APC feeds on testosterone . I cut my juevos to shut down 85 % of t . Then I take a test drug that stops the adrenal production. Don’t worry that you need to become a chemical genius to figure pc out . You will learn about it as much as you want to . It’s Easy to info overload. TMI . So just pray that he is cured. Live healthy and love each other . Apc is a wake up to enjoy life today . Once he heals then you both can take a deep breath . Happy that you’ve joined us here. Peace to you and your husband .. Good Luck 🍀 Scott in Prescott Arizona.
Hi, my husband had similar pathology to yours but after his RP last May it was found he had both EPE and positive margins. His PSA started to rise about 6 months after his RP and he is now 4 weeks into SRT. I hate sugar coating and I find the doctors tend to do this often. "Oh you're cured, Oh you have an 80 percent chance of radiation fixing your cancer." Yeh, right.
Anyway, I have learned a lot here, although this is the group for metastatic cancer. I tend to visit the other group too since we are not metastatic .....not yet anyway.
The only advice I'd give you right now is to get some vaseline or other ointment to put on that catheter where it feeds into the penis. It began to hurt after some time.
Well before he started the radiation it had risen to .3. Which is a biochemical reoccurrence. He is tired as hell from the radiation and says it makes him dizzy. He has had 18 treatments total out of 35. They wont check PSA for several months after the radiation is completed, from what I understand.
We have not changed diet, although I'd like him to cut back on some of the processed meat he eats. He is big into bacon. I'd like us to eat fish once in a while just because it has other health benefits.
I live in the USA. Feel free to message me for any reason!
At the beginning I thought he was dying but he's still here 3 years later..it's a shock to the system but in time you adjust to the new normal. Be prepared to fight for everything in this country😁
In response to your question you might spend a bit of time looking at YouTube videos of Dr. Laurence Klotz and Dr. Charles "Snuffy" Meyers two internationally noted urologists. Dr. Klotz observed that Gleason grades 2 through 5 presented the same risk as Gleason grade 6 which rarely ever causes cancer. Grades 2 through 5 were eliminated.
There are some YouTube videos of Dr. Greger you will find interesting. Pomi-T is the combination of four ingredients that were found to be helpful in killing prostate cancer cells. Dr. Greger speaks of the study funded by a non-profit which found these four ingredients were very effective. Dr. Ruth Heidrich's story and success in overcoming cancer is uplifting. She is a runner. Form follows function. The small vibrations through the skeletal system when a foot impacts the surface when one is running stimulates the body to deposit the minerals in the bones increasing strength and density. The immune system begins in bone marrow. Would this stimulus also strengthen one's immune system? I postulated this to my oncologist and he said there may well be something in it. He has been involved in prostate cancer studies and is no slouch.
I am glad your surgeon gave you such a good report. Did he tell you about side effects such as climacturia? Most urologists don't. I was at a meeting where continence was a topic. A therapist was speaking of ways to increase continence. The therapist had an excellent presentation but didn't mention climacturia. I was allowed to speak and broached this sensitive subject and the interest in the group gathered was certainly renewed. From my readings, many men experience climacturia but it "usually ends for "most" men " after time.
Watch, read and think about what you have reviewed and decide for yourselves if you wish to make some lifestyle changes.
The doctors I mentioned are all highly reputable and recognized. There is much snake oil peddled to those that have cancer, have had cancer and hope to prevent recurrence. Just beware.
Dia dhuit. You got lots of replies and this group is loaded with advice. Check the other forums, too, specifically the care givers forum. Diet? Any heart healthy diet will excel. Your man's future/prognosis is quite good. I can share that FOR ME the four weeks after the catheter came out were the worst. I was lost, had no instruction from the surgeon or his staff on incontinence garments and controls and was convinced I was going to be pissing myself (and the bed) the rest of my life. Did not happen. At 4 months I had 90% control and at five month 98%. I no longer wear shields and I do have the occasional dribble.
That has been true for most of the men in my support group.
I am now 19 months out, PSA remains undetectable. At 76 the landscape is somewhat different from that of a 53 year old. Happily, there is beginning some stirring of natural sexual function. I did all kinds of sexual rehab and recommend it to him, too.
I will hope that there was genomic testing of his cancer. Those results will be critical if he needs additional treatment.
One other tip: triple antibiotic ointment once a day on the tip of his penis where the tube goes in. Lubricates, reduces rubbing and protects against infection. Be sure he is not allergic to neosporin; uncommon.
It sounds like he is in better shape than you think. His survival odds are pretty good. Especially if he has follow up pelvic floor radiation. I was a Gleason 9 with one area reaching the margins—that spot happened to be a Gleason 6. Since my surgery three years ago my PSA has been undetectable. I’m 70 YO. Best wishes to you both!
James A. O’ Hearn got run out of Peoria for having the largest still in three counties and running a speak easy during prohibition. He became a merchant marine in Seattle .
🤔 Hmmmm? I can distantly remember love on the beach . Met my wife on the beach in Cabo San Lucas .. There was tequila involved😂Just watch out for the sand? What a great name for a tropical drink . And what young couple in love drinking those on the beach wouldn’t try to follow trough ? When they came out with the drink name” sex on the hood “ it was too real ..
I had RP May 2019. T3b, Gleason 3+4=7, PSA 9.7, age 67 at RP. I had positive surgical margins and capsular invasion. Several pelvic lymph nodes taken at surgery were cancer free. Many on this site are Stage 4.
Much depends on the pathology report.
If the cancer is confined to the Prostate the chances of a cure are high but never 100%.
If the cancer has pushed through the Prostate Capsule (around the outside of the prostate) or there are positive surgical margins, the cancer may be in the pelvis around the prostate. There will have been taken some lymph nodes at RP. If these show cancer it is definitely in the pelvis. If not in the pelvic lymph nodes but with positive surgical margins and/or crossing/invasion of the Prostate Capsule it could still be in the pelvis but is just not seen.
Prostate Cancers in just the Prostate Gland and in the Pelvis also have a high cure rate (never 100%), especially if there is no lymph node invasion but even with pelvic lymph node invasion, if the cancer is confined to the pelvis cure rates are high.
If there are positive surgical margins and/or prostate capsular invasion but no lymph node invasion some Doctor's do radiation treatment anyway to try to kill any unseen microscopic cancer (called Adjuvant Radiation Treatment). Alternatively, some Doc's wait until PSA starts going back up before giving pelvis Radiation Treatment (called Salvage Radiation Treatment). I had Adjuvant Radiation Treatment.
If the the cancer has invaded the seminal vesicles, this a problem because the seminal vesicles are very vascular (have a lot of blood vessels) and many authorities believe this is a way the cancer can spread through the bloodstream to the body.
So the important things to look for in the Pathology Report are:
1---did the cancer get into or cross the Prostate Capsule (aka Prostate Capsular Invasion)
2---is/are there 1 or more positive surgical margins (aka Positive Surgical Margin/s)
3---is there any cancer in the lymph nodes that were removed during surgery (aka Positive Lymph Nodes).
4---is there cancer in the seminal vesicles (aka Seminal Vesicle Invasion)
Prostate Cancer in only the Prostate or in only the Prostate and the Pelvis (T3b .... what I have ..... is one of these) is curable in many cases.
At this time, Stage 4 Prostate Cancer (beyond just the Prostate & Pelvis) is not curable. However, many years, even decades, might go by before death AND as each of these years goes by more is known which influences treatment and increases the length of time of survival. Since over 1000 studies on Prostate cancer are going on today there will be a lot more known in the future. It is possible (many say likely) that cancers that are incurable today will be curable in the future ..... just survive until a cure is available.
As an aside, I have an Irish friend (born & raised in Ireland .... around Cork if I recall correctly .... ) who now lives in the USA (as I do) whose husband also has come down with Prostate Cancer & is scheduled for surgery. He is younger than your husband.
I am a retired Physician with a Prostate Cancer similar (as near as I can tell) to you husband's. If you or he would like to e-mail me directly I am open to this, just let me know. For a Medical Oncologist I am working with a Dr. Vogelzang who is a leader in Prostate Cancer Research so I am confident in his guidance.
I am currently getting a PSA test every 12 weeks. My PSA is around 0.05 and this is not a concern to Dr. Vogelzang unless it goes up to 0.10 or more. I will get PSA tests for the rest of my life. With time (the greatest chance for a re-occurrence is in the 1st 5 years) and continued normal tests, the testing interval may go up but I will still have to be tested at regular intervals.
Thank you Rick for the information, I’ll check out each of those question soon as I get pathology report for sure. I’m truly grateful to you and Yes I will get in touch with you to borrow some of your experience. Best wishes to you from across the Atlantic. ☘️
T3b means the cancer was not found in the seminal vesicles .... if it were in the seminal vesicles that would be T3c ... so 1x question answered ... texasoncology.com/types-of-...
There are supplements that can interfere with PSA tests. So far, the list of substances that may interfere with PSA tests, creating false negatives, includes:
7 days .... I am an IRONMAN athlete and do a lot of training so am not bored.
I have a few friends who have had, or are pre-surgery for, Prostate Cancer and compile what I know/see. The above info on supplements interference with PSA was from an article posted by someone on this site I think less than a month ago, however, Dublin1717 just came on this site and might not have had an opportunity to see this.
I was pretty far advanced. Sooner or hopefully much later a return is predicted ...for all stage#4 guys . For him it’s curative ! That’s the probable hope for him.. Good job catching this way before I did . I can’t dwell on it... I’m lucky to be alive today . Today is beautiful for us . Slight rain showers have dropped the temps to a cool breeze. We live on the edge of the juniper forest . Any rain is good in this high desert 🌵 Good day !😎
Too much rain in Ireland. I’d like some of that high desert. Enjoy every day. Don’t sweat the small stuff, I say that to remind my self but I never listen.. 💚☘️
Yes mam! It ain’t what it used to be . One credit check and my deadly past is revealed to all .. Actually , I can’t kill a fly . I’m into promoting life😎🏋🏻♂️
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