Introduction from PC newbie - Prostate Cancer N...

Prostate Cancer Network
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Introduction from PC newbie

tucker_man
tucker_man
•22 Replies

Hello all. I noticed HealthUnlocked is headquartered in the UK but I hope a Yank is welcome. Just got my MRI fusion biopsy results last week: positive cancer in one core, Gleason 6. I believe that makes me low grade T1c. Last PSA was a little over 6. Sorry if I get the lingo wrong. My wife and I meet with Doc in a couple days to discuss treatment options. They gave me Dr. Patrick Walsh's book on Guide to Surviving Prostate Cancer. I've been reading, ad nauseum, about treatment options. At first, I was convinced I should go the prostatectomy route, but now, not so sure. I expected to live at least another 20 years (I'm 58) until I got this news but I'm hopeful that my treatment will let me die of something else. Since I have a long horizon, I want to be aggressive so I can put this behind me (as much as possible).

It seems that radiation treatments could be as effective as surgery but I read conflicting/confusing information on whether side effects (impotency, incontinence) are as forgone a conclusion as surgery, only delayed. My concern with radiation is that you still have a prostate and what's to keep that from getting cancer. I think I read one of you post that you can't get surgery after radiation, but you can go the other way around. Why is that?

I know I have a lot more thinking and learning to do before we make a decision (my wife will have a big say in this also) but I just wanted to get acquainted. TIA.

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Tall_Allen
Tall_Allen

Based on your diagnosis, you sound like the poster child for active surveillance. Why are you even considering treatment at this point?

Benign prostate tissue never becomes cancerous after radiation - it mostly atrophies. Mine has gone from 55 cc to about 20 cc.

While it's true that salvage surgery is a poor idea after primary radiation, a MUCH better idea is salvage focal brachytherapy or focal ablation. Radiation changes the prostate tissue making it stickier. Consequently, attempts to remove it surgically require digging and scraping that can injure the bladder and rectum.

Take plenty of time - a year or more would not be a problem.

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tucker_man
tucker_man
in reply to Tall_Allen

I'll know tomorrow the size and location of my tumor when we meet with the Dr. The problem I have with AS is my timeline. I find it very hard to believe that, left alone, in the next 20 years, my cancer won't progress to being serious or life-threatening. Sure, I could wait until it gets bigger or worse, but why? To delay the side effects of treatment? Seems to me that I have a better chance of non-recurrence if I treat it while it's small and localized. My PSA increased from 4 to 6 in less than a year. Even though my Gleason score is only a 6, do I take a chance with my life or live with cancer in my body to avoid side effects that will likely not be permanent or debilitating? While the one core they found cancer in shows low-risk cancer, pathology on removed prostates have shown more aggressive/extensive cancer than was apparent in the biopsy. I'll let you guys know what my doc says after tomorrow. Thanks for welcoming me to the forum.

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Tall_Allen
Tall_Allen
in reply to tucker_man

i can only tell you what the facts are. The stories you make up in your own head may be creating unnecessary anxiety for you. The fact is, that in the longest running clinical trial of AS (at the University of Toronto), 55% of men have never been found to progress while on AS. MSK reported similar numbers. AS has been also found to be very safe - one is not "taking a chance with one's life."

It is true that about a third of Gleason scores are upgraded at prostatectomy (and about 10% are downgraded), but that does not matter. The outstanding results of AS are true based on what was found at BIOPSY.

Prostate cancer, unlike most other cancers, is very slow. In fact, in cadaver studies of men who have died from other causes, prostate cancer has been found in a very high percentage of them. Mostly, it is INDOLENT and INSIGNIFICANT. How do you know if yours is? Easy - you watch it very closely with PSAs (BTW - PSA kinetics have not been found to be a good indicator - you should consider using PHI instead), DREs, and targeted biopsies.

You may be interested in the only trial (in the UK) where patients were randomized to surgery, radiation, and AS. They found no difference in 10-year mortality among the 3, even though AS was done (what we would now consider to be) badly (without confirmatory and f/u biopsies).

pcnrv.blogspot.com/2016/09/...

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dentaltwin
dentaltwin
in reply to Tall_Allen

I certainly agree that tucker man SEEMS to be an ideal case for AS. Are you sure that benign prostatic tissue never becomes cancerous? (I'm not speaking here of cancer that may have evaded RT). In my field there is a concept of multifocal carcinogenesis (sometimes referred to as "field cancerization"). The idea is that if there is exposure to a tumorigenic agent in a tissue, multiple areas may be predisposed to cancer. There seems to be far less in the literature for PC than for oral/oropharyngeal tumors, but it's not completely lacking.

Again, I agree that this patient should give serious consideration to AS.

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Tall_Allen
Tall_Allen
in reply to dentaltwin

Yes - I'm quite sure that benign prostate tissue never becomes cancerous after radiation. (As you say, this is different from radioresistant cancer). There has never been a documented case that I know of - have you seen any? One RO described the tissue as "fallow." The benign tissue shrinks over time and atrophies from disuse. Unlike most cancers, where just the tumor (plus a margin) is treated, the whole prostate is treated because 80-90% of the time, tumors are multifocal, even if too small to be detected.

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dentaltwin
dentaltwin
in reply to Tall_Allen

I'm certainly not as familiar with the literature as you are, and wouldn't actually be aware of cases (although, if there has been biochemical recurrence after RT, how would you distinguish between an occult focus that was resistant, as opposed to a de novo tumor? I realize that to a certain extent, this may be a distinction without much clinical significance). That they are multifocal is similar to our usage of the term "field cancerization" in oral tumors. Mostly we see recurrence near a previously treated lesions. The analogy is not perfect, since most oral tumors are treated surgically. And you are right--in the mouth you are treating an area of a much wider field potentially exposed to a carcinogenic agent, as opposed to a circumscribed organ like the prostate. |

Thanks for the reply.

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judg69
judg69

Hi Tucker_man, Tall_Allen gave you very good advice. With a Gleason 6 , I strongly suggest you do NOTHING at all at the present time. Your situation sounds like it calls for ‘watchful waiting’ with your doctors observing it periodically. You may or may not need treatment at some future date. I am in the states also and have a high grade Gleason 7 ( 4+3 ) with cancer in 10 cores so I am being treated with hormonal shots and radiation. Rest assured that if I had your results, my urologist and oncologist would recommend ‘watchful waiting’. Best Wishes, judg69.

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Graham49
Graham49

Whatever you choose I suggest you take a careful look at your lifestyle, e.g. things like whether you smoke, your diet, how much alcohol you drink, how much exercise you take and whether you carry any excess fat (especially visceral fat). You can get a lot of advice on this website.

Good luck

Graham

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Darryl
DarrylAdministrator

Hi Tuckerman. This community is run by Malecare, a USA based nonprofit. Healthunlocked is just the platform we use. You are welcome, as are all people from around the world.

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CalBear74
CalBear74

Please listen to Tall_Allen and start an AS program. As Graham suggests, consider significant lifestyle changes though that would inhibit PCa. Here are a few videos to watch to change diet (they are very brief):

nutritionfacts.org/video/tr...

nutritionfacts.org/video/tr...

nutritionfacts.org/video/dr...

nutritionfacts.org/video/ho...

Good luck,

CalBear74

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tucker_man
tucker_man
in reply to CalBear74

All good videos, thanks. I question, however, the diet/prostate cancer links. First, they use PSA exclusively as a measure. Is it possible that the diet is shrinking healthy prostate tissue to reduce PSA (maybe it's reversing BPH, for example)? The amount of PSA movement in the graphs appeared to be under .5. I'm not saying a healthy diet isn't a good idea in any event, but other than eliminating meat and dairy products completely, I feel like I eat pretty healthy already. My BMI is low (I'm 150lbs/5'11"). I never eat fast food, eat salmon regularly, have cut added sugar. I guess there's always room for improvement if I compare to Dr. Greger's diet. Not sure I can go vegetarian.

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MBOY1
MBOY1

Hi TIA.

I’ve seen lots of good info responding to your post. I concur completely on going the AS route. When you dig deeper into these scores you’ll find many who don’t even think “cancer” is an accurate description of a

3 + 3. This is a very slow growing type of cancer so why not watch it with a solid plan? Even if your scores change you will have time to treat appropriately.

I am a 3 + 4, diagnosed last February and am just starting proton beam radiation this week. My team of docs are comfortable with even this much time passing prior to treatment.

I have spent much time on several different sites. This one clearly has been most and informative for me.

Keep us informed and you are not alone on your journey.

MBOY

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tucker_man
tucker_man
in reply to MBOY1

Thank you, I will. BTW, the acronym TIA means “Thanks in advance”. :)

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MBOY1
MBOY1

Ha! I thought it was an acronym of your name🙉

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Jeff85705
Jeff85705

Welcome to the club nobody wants to be in! Don't worry about this being a "UK" site. Lots of Americans are on it, maybe more than Brits. Not sure. It is international in its mission.

I agree with Tall_Allen, a physician, on the active surveillance route in your case. That might well include an annual biopsy, but considering you're 58 with a slow-growing tumor, AS sounds like the best choice. I understand your fear of the cancer growing, and the first reaction of getting rid of it. But why do so and get the side effects of RP at this early point? Do you want to have total ED now, when you can just as easily wait and do AS without worry, and enjoy sex? If I were in your position, I would go with AS. I have had DaVinci robotic "nerve-sparing" total prostatectomy at age 67 with Gleason 3+4(7) and PSA 10 and growing. I chose RP because I wanted the tumor gone along with the prostate, and I had a semi-aggressive disease. Actually, after surgery, the pathology report showed 4+3, even more aggressive. That's the advantage of RP, and I don't regret it. I had the psychological shock of immediate and total ED that lasted over a year before even Viagra would help (it takes a long time for the delicate nerves to recover from the surgical trauma). The incontinence part was brief and lasted about 2 months. So it was right for me.

I am a big proponent of RALP RP for people with Gleason 7 and higher, because of being rid of the gland, the microscopic look that the surgeon gets of the area around the prostate, and the dissection of the prostate by pathologists to give a more accurate assessment of the tumor--mine and lots of other men got higher Gleason scores postoperatively. But I think it might be too soon.

About radiation treatment. Side effects include ED, but it is usually gradual over several months, not immediate. Incontinence is also a possibility, and other side effects from damage from the radiation. I am no expert on this, but perhaps you will get stories from men who went that route and what their side effects were.

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Tall_Allen
Tall_Allen
in reply to Jeff85705

I'm not a physician, but thanks for saying so.

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Jgrabr
Jgrabr

Good morning! I am three weeks out from having robotic surgery and am thrilled to have had the cancer removed. I am 66, had Gleason 6 scores in three of twelve samples from my biopsy. My PSA was 9.2. MRI indicated cancer was contained. I am 80% continent and improving daily. I have manually stimulated to orgasm, no erection yet. The surgery showed the prostate to be 20% cancerous with a revised Gleason of 7. I had a catheter for 6 days. I was on my feet walking the halls a short while after surgery. Stayed one night in hospital. I am blessed to be having these results. A few observations for you. If you decide for surgery, I had DaVinci Robotic, the selection of the surgeon is the most significant, impactful, important decision you will make. My surgeon was Vipul Patel in Celebration, FL, USA. He has done over 11,000 of these and his program, and it is a program the involves a few months, is outstanding. Remember that each case is individual and the journey will be different each time, sometimes similiar, but unique to you. My decision for surgery was based on the simple fact I had cancer in my prostate that appeared to be contained, but was advancing. I simply did not want to risk it's spreading. You will hit the internet and utube. There are a lot of "experts" sharing their experiences through videos. While these were informative, and helpful to a degree, don't assume this is how your experience will play out. It will be different. The folks here, while all well intentioned, often seem to want to advance the cause for their treatment. Just absorb it all, and use the info like tools in a toolbox. You can use different tools to accomplish a task, it's just using the tool that you are comfortable with. I investigated the various treatments out there including external radiation, seeds, hifu, watchful surveillance, and surgery. Based on treatment duration (big one as I am still working an active physically demanding job), surgeon, insurance coverage, impact on family, side effects, and the need (for me) to have know results, I opted for surgery. The incontenance potential was terrifying, but choosing the correct surgeon offered a potential solution. Being 66, impotence was not as important, but again the surgeon selection offered hope that little Jimmy would wake up one day. He's awake, just not standing. These three weeks have been filled with ups and downs, uncomfortableness, some pain, diapers, pads, and pee. Do kegals before and then do them as soon as possible afterwards. Do them sitting on the toilet (and get an extension for the toilet), do them laying down, and do them walking around. Apply an ointment to your penis where the catheter exits. Take the stool softener, drink lots of water/fluids, and do lots of walking. Most importantly, if you pick surgery, use the best surgeon and ask what their entire program is. Good luck in whatever path you take!

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tucker_man
tucker_man
in reply to Jgrabr

Thanks for the advice. Why did you opt for surgery over radiation? At first I was leaning towards surgery, but after repeated reading, I'm finding that the cancer prognosis after radiation is the same for surgery except lower side effects so now I'm leaning towards radiation. While it leaves prostate tissue behind that could get cancerous in the future, it seems a middle ground between radical surgery and AS.

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Jgrabr
Jgrabr
in reply to tucker_man

Hi! Radiation required multiple visits over several weeks/months. Potential side effects are scary, not just inconvenient. I read and heard of more issues with radiation, especially due to the prostate being adjacent to colon. They don't really know what's inside till they get there, with radiation they don't get there. My worst case was they would find it had spread. Then they could do radiation. Doesn't appear to work the other way around. Listen, I'm a little old fashioned and conservative in how I approach things. I wanted it out so I would not have to deal with it again. In my situation, that appears to have been the correct course. The concern is gone and I'm addressing the other issues, but on my own terms. Cancer is not looming over my decision making. I did meet folks who had radiation and are 100 percent satisfied. It just didn't fit in my comfort zone. But again, the surgeon is most important to the process. Go on utube and watch Vipul Patel, robotics institute video with tips and tricks. He is presenting to doctors in Australia before and then during a surgery. It's enlightening. Also, no decision will be wrong, it will just be yours. Whatever you decide, embrace your decision and commit to it 1000%. I am sitting here getting ready to head out to a little physical therapy for pelvic floor and incontinence issues. They are improving rapidly. My six small incisions are healed. I was on a ladder for two days (don't tell my doctor) installing Christmas lights on the house. Three weeks ago, in an hour I was being put out for the operation. I am blessed and do thankful. If I can help in any way reach out. Good luck and God bless!

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lillyofthevalley37
lillyofthevalley37

Radiation is not a good option in my opinion why not go for HIFU ?

you should stop drinking cows milk and get plenty of iodine in your diet and go easy on meat

Radiation can give you cancer - they have basements with all this dinasaur radiation machinery but things have moved on now with HIFU which was developed in Kings College London the same college is now pioneering a way of using radiation for a specific targeted area rather than being zapped all over with radiation

HIFU is available in US

Inositol stops prostate cancer from spreading it's readily available and easy to include in your diet

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tucker_man
tucker_man
in reply to lillyofthevalley37

IMRT and SBRT are not dinosaur machines. They target the tumor specifically not a wide area.

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lillyofthevalley37
lillyofthevalley37
in reply to tucker_man

I wish you well

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