After joining the HealthUnlocked PC Network a few months ago, I was invited to join the Advanced PC group.
My initial moniker was "longrungo" and for the Advanced PC group, I'm longrungo2.
My initial introduction is pasted in (and somewhat updated) below and I'll update with further concerns in an additional post.
Thank you for the opportunity to share and learn!
I recently turned 70. I had Gleason 9 scores (4+5) in three cores and an MRI confirmed extra-capsular invasion.
In December 2017 I opted for a robotic-assisted prostatectomy at a world-class US hospital.
According to the surgeon, pathology done during the procedure revealed invasion of one seminal vesicle. I assume this persuaded him to cut wider. Upon completion of the procedure, the surgical team noted that the drain contained too much blood. They deliberated, and finally scrambled to cut me open to find the source of the uncontrolled bleeding. Large vertical incision through/around the umbilicus. After 90 minutes and a transfusion (one unit), they finally located the vein they had cut, and they sutured it. Bleeding stopped. Surgery pathology results also showed no invasion of (11) lymph nodes and negative surgical margins. Very grateful for that. After they closed me up I spent two nights in the hospital, with a great nursing staff. Great that, after dozens of years of paying high medical insurance premiums, now Medicare covered the costs. Went home with a catheter and 11 days later returned for catheter removal. Subsequent incontinence was severe. Was blindsided, as post-surgery release notes made only passing reference to incontinence after catheter removal.The incontinence improved a moderate amount and has plateaued. It's still a BIG problem. Cannot work at my former, non-desk job. Also experiencing total ED. My PSA upon diagnosis was 4.4. It had fluctuated between 4.1 and 5.1 in the prior months. The surgeon says I am a prime candidate for recurrence and I'm tracking my PSA every two months. If it trends upward beyond a low red line, then salvage radiation is probably next. PSA result in Feb 2018 was 0.04. It has increased but has held steady at 0.08 since June 2018. Some would call that a negligible number but I don't, since it has doubled. Hoping to forestall recurrence, I've converted from 9 years of a pescatarian regimen to a vegan way of life. It's taking time to adjust -- all the meal planning and lining up sources for a mostly-organic nutrition regimen. Not that easy here in Northern Europe, where I spend much of the year. I'm also combining anti-cancer foods, such as broccoli sprouts (sprouting myself), freshly ground organic flax seeds in smoothies, cooked tomatoes, walnuts, raw red cabbage, organic green tea, cocoa, pomegranates, resveratrol, etc, etc. I've been following Dr. Michael Greger's great website, Nutritionfacts.org. I'm interested in other alternative ways to fend off the cancer and just began reading "IP6 and Inositol" by Prof. Shamsuddin.
My future is very uncertain, but with a 5 year old son, I really want to survive. Maybe, maybe long enough to see him go to university?
We'll see if that's possible.
That's a summary of my tale so far.
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longrungo2
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It sounds like you've been through the mill. I'm a little surprised that they didn't prepare you better to expect incontinence and impotence, but that's now water under the bridge and, whether they prepared you or not, the outcome would have been the same.
I suggest that you keep dealing with this as best you can to see if the problems get better. If they don't, there are things you can do short of another surgery, for example a penile clamp to help control the incontinence and pills (probably won't help) and self-injections (probably will help) for the impotence. A good and sympathetic urologist can help. A penile clamp or other simple mechanisms may be all you need to return to work if that's what you want to do. You can also learn to have sex without actual penetration which, in my view, can be very satisfying for both partners if you both decide to make it work.
The one thing that I'm most wondering about is your PSA of 0.08. I suggest that you get a second opinion on that. It sounds like some cancer remains. The fact that the PSA hasn't gone up more suggests that it might still be local, within range of salvage radiation. I would think that the chances of killing it now are better than waiting for the PSA to rise.
Radiation will add another wallop to the prostate region which hasn't fully recovered from the first one, but it might be worth doing. Given your desire to see your child grow up (and him to have a father), you might be willing to trade the increased risk of side effects for the decreased risk of metastatic cancer. It seems to me that your dietary work might help and can't hurt, in slowing down cancer growth, but I don't believe that it's going to kill all the cancer. I suggest a second opinion from a really good radiation oncologist who specializes in prostate cancer and has a lot of experience with salvage radiation.
Thank you for your thoughtful reply, AlanMeyer. As far as next steps in treatment of the cancer are concerned, yes, I feel it's a bit of a catch-22: Intervene with radiation sooner and they are aiming blind. This can create damage to surrounding structures and also make the incontinence permanent. Wait for the cancer to progress (following the PSA) until it's discernible on a PSMA CT scan, and now it's spread further and is more dangerous. What's the good choice? Good question.
As to a penile clamp for incontinence reduction - I already tried this some months ago with a Wiesner clamp. My experience was negative. The clamping action was more or less effective (less in certain seated positions which shifted the perpendicular axis of the clamp to the urethra) and though I only wore it for two to three hours per day I stopped using it after 3 weeks. Why? Because it restricted blood flow to the penis (I believe I judged correctly what degree of clamping was needed to restrict urine flow and chose reasonable pressure) and ultimately deadened the penis and nerve sensitivity even further. I believe it compressed and did some damage to the corpora cavernosa, thus making the ED even worse. I do NOT recommend.
As to a condom catheter (Coloplast), I found the adhesion to the penile shaft to be unreliable, and again, the alignment of the outflow tube with the urethra depended on one's position. Sometimes the urine did not flow directly into the outflow tube and on to the bag, but pooled in the condom's bulbous head, thus creating more gravitational pull on the condom part, challenging the adhesive's capacity to keep the sheath in place. In addition to which, many urologists recommend neither, saying that they both delay the development of one's Kegel muscle capacity by having the patient "unconsciously" -- I think "reflexively" would be more accurate - rely on an external barrier to restrict urine outflow.
I have been doing Kegel exercises and have seen relatively recent continence improvement, but my dreams of an easy fix are moribund.
It sounds like you've analyzed all of the issues in considerable depth.
One thing I'll add is that you might still want to seek out a really good radiation oncologist and consult him. What you said about not knowing where the cancer is yet is surely true, but it may also be the case that, by the time it's big enough to see, it will already be in other places that you can't see. From what I've read, we know that salvage radiation is most successful on patients with a PSA below 0.2 and the odds begin declining significantly after 0.4. I suspect that successful salvage cases don't target specific spots but just radiate the entire area around the prostate.
In my own radiation treatment (primary treatment, not salvage, with HDR brachytherapy in the prostate itself), the rad onc said she was radiating everything within one centimeter around the prostate. I doubt if that was truly everything, but it was probably all of the places where cancer most often spreads. That was 15 years ago and I've been okay since.
In any case, meeting a rad onc now doesn't commit you to any actual treatment but does set things up so that, if and when you decide you want treatment, you will have laid the groundwork for who you want to do it, where, what it will be like, and what PSA you'll be looking for as the trigger to get the radiation.
Whatever happens, I hope you get to see your son through college, and I hope you can do it without wetting your pants
Yes, leach234, but l could be more rigorous in following a regular schedule.
Also, I only had online videos to follow. My appointment with a pelvic floor exercise counselor was all about filling in charts, noting liquid intake and measuring outflow. Only verbal explanations on how/where to squeeze. Neither of us got down on the floor and actually trained. I did not fill in the charts. That seems more useful for them than for me. Thanks for your good question.
After my surgery I talked to a guy who did 250 kegels a day! I never got close to that but I was pretty good at doing 3 sets of 15-20 day and holding them for 20 seconds. Did this religiously for 2 months until the incontinence eased up!
I am perhaps in a somewhat similar position, and maybe a little ahead of you in looking at options.
On the continence front - you should have been shown how to do pelvic floor exercises prior to surgery, but that’s past now. I suggest you seek out a good pelvic floor physiotherapist and get started now. It makes a huge difference, and you should still be able to achieve complete control, all things being equal.
I also had pT3b post RP pathology, meaning extracapsular extension and seminal vesicle invasion. G7=4+3 plus tertiary 5. Post op PSA undetectable but at five months 0.024, rising log-linearly to 0.058 at 9 months (now). Calculated doubling time is 2.9 months, which is too fast.
There’s no doubt this trend will persist and I see no advantage in waiting for the artificial BCR threshold of 0.2 before doing something. That said, in your case, you need to prioritise sorting out the continence, and you have time to do that.
The bigger issue is what then? The radiologist I have consulted is willing to do early salvage radiotherapy eSRT, but says he’s never cured a pT3b patient with negative margins ie if the surgery was well done and nothing obvious left to clean up, then all he can hope to do is clear out local lymph nodes - and whenever there has been SVI, he’s never succeeded in curing a man by eSRT.... everyone wants honesty from their doctors, I just wish his honest answer was more hopeful!!
So what am I doing?
I am losing weight, which I had gained in the five years pre-diagnosis, and taking turmeric, resveratrol etc etc, but like you, I have some pretty young kids (9 and 12 vs my 62) so I need a more certain answer. So far, these steps have made me feel better, but not impacted PSA progression.
In the near term, my goal is to slow PSA progression to give me time to really dig into this eSRT issue, so I have just been in London (I am Melbourne-based) to start on CareOncology’s four drug program aimed at slowing progression. We’ll see how that goes - the science looks good, and not just in petri dishes and mice, but we’ll see.
I have seen a Finnish paper that charts a early post-RP micro PSA results and shows that progression is log linear - so I expect to see evidence of slowing pretty quickly if it’s going to happen at all.
The other thing I’m Planning on doing when back in Melbourne is getting Decipher run on the tumour specimen, to see if I fall in the 50% of SVI PCa patients who are “low risk” for metastatic progression - I suspect this will mean going to the US to get a knowegable interpretation, and of course, if I lie in the high risk half, it just winds up the pressure.
If I finally decide eSRT doesn’t look worthwhile, I guess the next step will be fairly regular PSMA PET scans, with targeted beam therapy to knock out the hot spots as they emerge - but again, I would like to buy more time to see results emerge as to whether this is a useful course of action. Some people down here are trialling this as a management approach, but I am yet to hear anyone claim that have been cured in this way. I guess it hasn’t been around long enough as an option to know if it can prevent eventual metastasis.
Like you, I want more time to be there for my youngest two - I guess I will do whatever is needed to achieve that. RRP has already cost me dear in terms of ED, but I am now worried that is beginning to look like it was a rather cheap down payment on what’s to come!!
All the best, and keep working on the incontinence - you can make a difference there that will encourage you. pT3b is not a great place to start, but plenty were in worse positions and are still doing well.
I agree about the pelvic floor strengthening exercises. These are specialized physiotherapy centers that do this. I went for a while but then I realized I could duplicate all of their procedures at my gym which I have done. Always Kegel in connection with the weights.
First of all you'll not only be around to see your son get his college degree(s) but you'll be around to see him marry a beautiful millionaires. Second, where are you located in Northern Europe? Thirdly, make sure you see the "best" radiologist to fry your prostate bed. Finally wear "two" depends to help with your incontinence (change frequently).
From your mouth to God's ear on the longevity - millionairess not expected! One of my fears is that radiation will have to be followed by a series of ADT drugs, the best of which would bankrupt me in the US and/or I'll be forced to choose affordable but perhaps not optimal ones in Tallinn, where I am much of the year..
Yes on the Depends. I use the pants AND the guards in tandem. I wear both when I'm out & about and only the pant/diaper at night (with a full mattress pad, plus a circa 60 x 90 cm pad over the sheet, and a disposable absorbing pad over that.
Estonia hmmmm. I don't see why Medicare wouldn't cover your Pca meds. Which world-class US hospital performed your RPD? Sometimes US hospitals can arrange for low cost drug subsidies through pharmaceutical companies.
I have been using IP6 since 2015 following reading of Dr. Shamsuddin's book. (Relevant data: 2012 diagnosis, 70 years then, G8, PSA 19, two pelvic bone mets, no surgery or radiation, Lupron and Casodex immediately commenced.)
I have periodically communicated with Dr. Shamsuddin via email at the University of Maryland Medical School. The first contact followed my initial visit in late summer 2015 with my urologist who had diagnosed me in 2012. My PSA came in at 0.1, a lower PSA score than we were expecting. He requested a DRE which surprised him as my prostate lacked any palpable evidence of nodules. I did not at this time tell him I was taking a massive dose daily of IP6. He had been very dismissive of natural supplements and diet modifications. I told Dr. Shamsuddin about this result and he said it was consistent with his IP6 experiments. IP6 will normalize cancer cells. If the dose is heavy enough apoptosis will occur. (This is explained in the text you are reading.) He has been very supportive and is a remarkable and kind gentleman.
I have since then relocated (fall 2016) to FL with my wife to be close our grandchildren. My FL urologist (Brandon, FL) was skeptical of my medical history notes and insisted on doing a DRE. This resulted in his agreeing with my previous urologist that there were no discernible nodules in my prostate.
If you decide to begin an IP6 regimen, message me and I will be happy to provide additional details on what I have learned over the last 3 years about taking this supplement.
Your happy vegan CalBear74
PS. Have you ever investigated capsaicin/cayenne? It was missing from your list of supplements. I take it daily with naturally sourced lycopene (tomato juice, tomato soups, pasta sauces made of tomatoes, etc.).
Thank you very much CalBear74. I AM very interested in the IP6 - what doses and in what form to take it. I would like to follow up with you. When you say "message", is there a PM option here? I wasn't aware...
Thanks for prompting me. I returned to Baltimore to see my surgeon in Dec 2018, one year post-RP. Staged T3b, with invasion of one seminal vesicle but negative surgical margins and negative invasion of 11 lymph nodes, I still developed leakage of lymphatic fluid and the formation of a fist-sized lymphocele (cyst-like sac) which does not seem to be reabsorbing. In the intervening year my PSA had risen from 0.04 to 0.05 to 0.08 (twice) and on to 0.12. My surgeon called the rising PSA "alarming" and suggested I consult a radiation oncologist. He did not refer me to any specific rad oncologist, saying that radiation is best be performed near home, as a matter of practical convenience. Staying in the same system I consulted a top JHH radiation oncologist who conscientiously examined the original images of the pre-biopsy MRI from August 2017, images that confirmed extra-capsular extension of the cancer. He was surprised to see quite extensive cancer even though my PSA readings were a modest 4.1 & 4.4. He concluded I belong to a group of patients who don't show a high PSA - even with extensive semi-localized disease present. Based on that reasoning - though I was now presenting with a PSA of only 0.12 - he thought it might be worthwhile to do an Axumin PET scan to see if any cancer could be identified. I did the test and the results were negative. Nevertheless, he recommended I do 7 weeks of salvage radiation "aimed at the pelvic area", as I understand it. Concurrently, I consulted a good medical oncologist. also part of the JHH system. And he did not think I should jump to do the radiotherapy. Given my existing ED and persistent incontinence, the med oncologist thought the risks might outweigh the benefits. His recommendation was that I begin with a 30 mg injection of Eligard (time released for 4 months), complemented by a daily 50 mg of Bicalutamide. I began that regimen in late January 2019. So far, my ADT side effects have been mild, with difficulty sleeping being the most obvious. I continue to feel bloated because of the leaked lymphatic fluid in my system. My latest blood tests came back with a PSA of 0.02 and a metabolic panel within normal range, except for slightly elevated potassium. The ED and the incontinence persist. Do I feel like a polar bear in the present-day arctic? Yes.
Good to hear that your PSA is controlled by ADT therapy. So can someone postpone salvage radiation few months using hormonal therapy? Or that's it just hormonal until next step in the journy?
I have used several methods to treat my ED, and it seems working. Did you tried cialis and viagra alternatively?
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