PSA 20 and still watching and waiting going on 10 years

[LukeYoung10]

I was diagnosed with stage one PC almost 10 years ago with a steadily rising PSA. I'm 53 and in good health. Taking no medication.

How long is too long to watch and wait? After reading articles and looking at studies I'm starting to think there are two types of PC - the aggressive kind that they find when it's too late because it's already spread and kills you and the other kind that they have hundreds of thousands of men terrified of and are treating them with biopsies, MRI and PSAs until they scare them enough to finally treat them.

I believe that those "other" cancers don't need to be treated (or at least don't need to be treated for a long, long time) And I think when they do treat them 40% of men are left with ED and end up getting the cancer back when it was going to cause them a problem had they not treated their PC.

I think biopsies cause the cancer to grow faster and I really don't want to have any more of them. I think I've had 5 or 6 and it took them 3 before they finally got lucky enough to poke my prostate in the right place to find the cancer.

Is anyone else on board with this thinking?

Has anyone ever heard of anyone waiting too long and the cancer does finally leave the Prostate and cause them real problems? Or has no one ever tested this theory and succumbed to the pressure of spouses and doctors as they look at you flabbergasted that you are not cutting this cancer out of your body?

I don't believe they are curing anyone. I've seen the one study of men who get PSAs and those who don't and how the exact same percentage of those men died of PC 7% I think it was.

I saw the other study that shows men who get treated live on average 2.9 years longer. Really 2.9 years? I think I'll keep all my parts and give up those last 3 years. I get it's just an average, but where is the real proof that they are saving anyone?

I understand the why people get treated but I don't like those 40% odds of ED.

I just had another MRI and I'm told the cancer is still in the prostate but has grown a bit since my last MRI about 16 months ago.

PSA

9/3/19 -20.8

12/10/18 - 16.3

4/10/17 - 13.3

5/19/16 - 12.2

11/26/15 - 9.4

11/13/15 - 12.1

6/26/15 - 7.4

My father died at 72 with a PSA of 20+ but of something other than PC.

My Gleason score was 3+3 as of my last biopsy in 12/2016. Cancer found in five cores.

I had the genomic testing which wasn't definitive one way or the other in terms of the aggressiveness of the cancer.

[Tall_Allen]

It sounds like you are doing fine with AS. Over half the men who started on Klotz's AS program are still on it after 20 years. It sounds like your PSA is high due to benign causes and always has been - do you take Proscar or Avodart?

You may be interested in the following article about progression in Gleason 6. It can progress, but very slowly if it does. With all your biopsies, you have good certainty that that's all you have for now. Biopsies can't spread Gleason 6, but you probably don't need another one for some time.

pcnrv.blogspot.com/2017/11/...

[LukeYoung10 in reply to Tall_Allen]

I'm not taking any medication and my prostate is small. I don't have any urinary issues related to it. My doctor has never recommended any meds.

Thanks for the link.

[RunnerGrl]

I feel just like you, so much so I could have written your post. There are too many men who undergo aggressive treatment for G6 when they don’t have to, and I think the doctors who do it are scoundrels just looking to make a dime. My husband is G7, diagnosed last April, and he’s already had two biopsies. I’m worried about the biopsies seeding it and we have decided he prob won’t have any more biopsies. If Dr Epstein confirms the 7 my husband is considering FLA later. We have changed our diet to plant based and my husband takes lots of supplements and fenbendoloze and his PSA had fallen from 10.5 to 7.3. His urination issues have resolved also. We plan to do MRI’s to watch for growth or spread. He just turned 54 and quality of life is important to him as well. I read only 3 percent of men die with PCa, and no treatment is superior to another when it comes to survival. I wish I knew if that’s true. Good luck to you.

[bhayes84 in reply to RunnerGrl]

Hi RunnerGirl,

You might want to take a look at another OTC supplement (available on Amazon) called Artemisinin (an old anti-malaria drug). My PSA went from 4.8 to 9 in three months, then after starting Artemisinin it dropped to 5.1 then 3.9 over the next three months. I'll update this with a new PSA test in a few days.

This journal article is by a urologist that did a small study with his patients.

restorativemedicine.org/jou...

[RunnerGrl in reply to bhayes84]

Thank you. I will read about it and likely order it. I appreciate the information.

[bhayes84 in reply to RunnerGrl]

Note that you have to alternate - one week on, one week off because your intestines stop absorbing it.

[RunnerGrl in reply to bhayes84]

Understood. Thank you.

[depotdoug in reply to bhayes84]

Never heard of Artemisinin? I’d better look it up now. Maybe could be a help to my PCa advanced too. Does it help pelvic lymph nodes that have cancer too?

[bhayes84 in reply to depotdoug]

The only study I've seen only talked about PSA. Lymph nodes have their own micro environment and I don't know if Artemisinin can penetrate that.

The usual cautions apply for any supplement:

Don't use them instead of prescribed treatments.

Inform you oncologist.

If you're taking meds check to see if Art is contraindicated.

I don't have medical training so you should do your own research and proceed with caution.

OTOH it seems to be working for me.

[depotdoug in reply to bhayes84]

Thanks. I’ve informed my MO that I’m taking Super Vitamin B-Complex twice daily for my metabolism and neuropathy and immune system boosting. He said “no problem “ with that Super vitamin complex. But but research time for Artemisinin. Hope I’m not OD ing on B-complex

[bhayes84 in reply to depotdoug]

I think it's hard to OD on B. Your kidneys clear it very rapidly. But I would still only take the amount you find to be effective.

You might send your MO the Artemisinin link I pasted above.

You could also send him this link to a 2018 review article:

ncbi.nlm.nih.gov/pmc/articl...

[depotdoug in reply to bhayes84]

Got both on my email hot list for sending my MO on my Patient IUHealth portal tonight or 1st thing tomorrow. I’ll call them after they have digested the main subject/point. Phone calls get rapid response from my Med Oncologist staff team. It’s amazing how fast their Med coordinator tel peoples get answers to me! What is the main effect of Artemisinin though Bhayes?

[bhayes84 in reply to depotdoug]

Quote:

"Continued multiplication, growth, and survival of malignant cells require higher iron metabolism.

Cancer cells demonstrate an increase in transferrin receptors (TfR) that are responsible for uptake and regulation of intracellular iron levels. "

from:

"Anticancer Effect of AntiMalarial Artemisinin Compounds 2015"

ncbi.nlm.nih.gov/pmc/articl...

Artemisinin blocks many of the transferrin (iron) receptors essentially starving the cancer cells. Since normal cells aren't dependent on these receptors they aren't bothered.

From the same paper under 'toxicity' they state:

"up to one year have shown no adverse effects."

It's a very technical paper so much of it goes over my head.

You might send that to your MO also. It shows there is a lot known about this drug. But since it's off patent no drug company will pay for the research needed to figure dosage and which cancer types it's effective against. I also have CLL and it's mildly effective against it but not nearly as strong as Acalabrutinib which I take for it.

Again, if you take it you have to alternate a week on, and a week off or the body stops absorbing it.

FYI I use Thorne brand of Artecin from Amazon which I more or less picked randomly.

[depotdoug in reply to bhayes84]

That's a bunch(lot of) cancer cell starving info. I've been exercising again tonight, 3rd time today really. That's why I haven't responded or investigated both articles. Just read through some of both med articles. That's a whole new world for me to look into. Why not, Artemisinin is plant based so it should do the body good. THanks, Doug

[bhayes84 in reply to depotdoug]

Plants can be deadly to. Think of the death cap mushroom.

[LukeYoung10 in reply to RunnerGrl]

Do you have any links to your plant based diet or could you provide more information on what you are doing? I would appreciate it.

[RunnerGrl in reply to LukeYoung10]

We eat no dairy, no oil, very little sugar, mostly veggies, rice, beans, fruit, lentils, oats and nuts. Very little bread. You can read How Not to Die by Dr Greger. It’s very interesting and I believe there’s something to it. PCa seems to really respond to a plant based diet; I’ve read that you can slow it down by 70-80 percent by going plant based. Go to nutrition facts.org and put prostate in the search bar and there’s lots of stuff on prostate cancer and food that comes up.

[jctaylor]

Re your waiting too long question: I have a neighbor who followed the current guidelines and skipped the PSA test for a few years. At his next test he was 7.5 with bone mets. Prostate cancer can be aggressive.

[Adf2529]

“How long to watch and wait” is THE question, and it is very much an individual one. I was diagnosed with 3+3 in Dec 2017 and 3+4 in Dec. 2018 through biopsies. Low enough volume to uneasily stay on AS for 2019. The question “how long to watch and wait” started to take up too much emotional bandwidth. So I decided on treatment: whole gland SBRT radiation. I’m 65 and don’t expect any ED issues for a long time. BTW, the 40% ED rate you cite is one I associate with surgery, and that is also very much individual. SBRT has a significantly lower ED and complication rate. Tall Allen is an authority on the subject.

[dadzone43]

They talked a lot about AS at the New York conference yesterday. It works. It has to be both ACTIVE and SURVEILLANCE was their point. Casual watching without testing or imaging is not AS. The outcomes at Sloan Kettering are superb. That is the latest.

[Drmaciej]

I was diagnosed with a Gleason 6 at the age of 47. Great genomics making it very low risk. MRI’s negative. Went with Cyberknife. Instead of just watching, I blasted it. At this time no side effects, 7 months out.

[RonnyBaby]

Thanks for sharing. There's food for thought that is worthy of serious consideration.

[Jeff85705]

Active surveillance seems to be working for you. But what is your evidence that biopsies "spread" the cancer? I've heard this before, but never proven. Is it just your opinion?

There are actually 3 types of PC: aggressive and non-aggressive, and semi-aggressive, like my Gleason 4+3(7), detected as 3+4 in biopsy, then 4+3 in pathology after surgery.

Glad you are doing well!

[LukeYoung10 in reply to Jeff85705]

I didn’t write they spread the cancer just that I think it might make it grow faster. It stands to reason for me that if you pummel the absolute crap out of your prostate every year or so making it bleed like crazy that cannot be good for it. Doesn’t blood feed the cancer? I have no evidence but is there any real studies that it doesn’t do this? Although I do read about cancer reaccurence after surgery and how cancel cells can be left behind and that scares me too.

PC just seems to be a very unique cancer. How can anyone know if anyone is really being saved. Does it need to be treated or not and when. Will it simply come back and cause you an issue even if treated when it was supposed to in the first place and instead now you deal with a lifetime of side effects from the “cure”

I’m just not ready to give up my intimate relationship with my wife yet. Maybe in ten years or more but not yet

Some doctor at Hopkins wanted to yank it out 6 years ago. I’m glad the tide is shifting with more AS.

[Jeff85705 in reply to LukeYoung10]

Cancer cells can be spread via blood vessels, but I don't think there is any chance of the biopsy causing it to grow faster. I've never heard of it in all my research. I get what you are saying about PC. I suppose every cancer is unique. The silver lining to the PC situation is that we have a reliable test that can indicate possible cancer: the PSA (as you well know). It isn't just the number, but it's if your PSA begins to increase on a regular basis. Mine increased every year and so I had the biopsy which led to surgery (age 67). In your case, you are probably doing what is best for you. You are still pretty young. I wouldn't want radical surgery or radiation if I were in your situation. The permanent side effects and after effects are really life-changing. Just keep monitoring the PSA.

[ng27868168]

Lukeyoung 10, sorry to have to say this, but your letter scared the shit out of me. As a healthy and active 79 year old, 27 year Prostate Cancer survivor having been diagnosed at age 52 with a PSA of 10.8. And after having a biopsy which showed cancer contained in my prostate, I decided to have surgery to remove the Prostate Gland on recommendation of my Urologist as well as 2 other doctors following the biopsy. Since that time I have been a facilitator for our local Prostate Cancer Support group as well as being a former American Cancer Society mentor having talked with dozens of men over the phone and internet. I have seen more than a few men who, rather than have the cancerous prostate gland removed BEFORE it advanced OUT OF THE GLAND, they decided to "WATCH AND WAIT". My question to you is, "what the hell are you "watching and waiting" for, the cancer to grow out of your prostate and invade your whole body?? PCa is not a cold that's going to go away. The facts overwhelmingly show that once the cancer grows and escapes out of the Prostate gland and into other parts and organs of our body (bones in particular) it is a whole new and more dangerous life threatening slow and painful life losing disease. And as I said, I have seen more than a few men, who because they "watched and waited", are no longer with us after suffering a long, slow and painful life which ended up in death. In too many cases, after "watching and waiting" for their cancer to consume and leave the Prostate, their doctor says "well I guess if we would have known then what we know now, we should have been more aggressive.!" At age 53 you have a long life ahead of you. Please don't make a foolish decision based on not wanting to lose your erection. And finally, I get criticized on this forum once in awhile for posting like this, but from experience I have seen too much of the "supposed " "active surveillance" and "watchful waiting" turning into a death wish. Good Luck. (Just my opinion from 27 years of observing and surviving. ) And to those who disagree with me, good luck as well.

[LukeYoung10 in reply to ng27868168]

I'm waiting as I try to figure out if it needs to be treated and when. How can anyone answer that?

And how can you know that your treatment was needed or if those guys who died from not treating it wouldn't have died anyway about the same time they did when their "cured" cancer reoccurred.

I certainly understand why some people make the decision to get treated, but its just not for me or at least not yet.

I would like to see the studies that show that men are really living longer with all this treatment going on. I keep going back to this study which seems to indicate that not matter whether men are screened early with PSAs or not the same percentage die of PC.

harding-center.mpg.de/en/fa...

[ng27868168 in reply to LukeYoung10]

LukeYoung, thanks for your response. You asked "how can you know that treatment is needed?" Sadly, in too many cases the soonest you know is, when it's too late. One of the positives about the type of cancer we have, (if there is one) is that Prostate Cancer is one of the MOST curable forms of cancer IF, I repeat, IF it is found and treated BEFORE IT PROCESSES OUT OF THE PROSTATE GLAND. Once it is out of the prostate Gland, it becomes a whole different monster as it invades the Lymph glands and into the bones and other vital organs. I am not a doctor. My comments and opinions only come from my peroneal experience and 20+ years of being a facilitator for our local PCa Support Group and periodic visits to my urologist(s) as I have had more than 1 over the years as well as seeing the progression of PCa in men who for various reasons decided to "watch and wait". Some were and continue to be ok even though in many cases their PSA continues to climb. The fact that your PSA continues to rise shows that you obviously have an active form of the disease and the fact that in most cases, the younger the man, the more chance of having an aggressive form of PCa is true. But, like the old saying goes...., "you can lead a horse to water, but you can't make him drink" fits here. Again, Good Luck. I'm done.

[TB2G]

Suggest you read the publications of Dr. William Catalona with regard to active surveillance and age. Like you, I was diagnosed with Gleason 3+3 in 2 cores <5% each. But my PSA has gone up .7 in just a few months, and my MRI found a pirads 5 lesion that was 10% the volume of my prostate. Cancer was found near the exterior of the prostate on one side. At your age, you might atleast consider a prostatectomy. I've been dealing with prostatitis and serious urine retention for 3.5 years, and have had 2 UTIs. I don't want to deal with this anymore. Mine is coming out in 2 weeks, and then all this Crap will be a soon to be distant memory. Getting it out sooner gives you a very high probability of a cure. I would also add, you run 40 to 60% chance of ED with Prostatectomy, but, if your worried about your ability to remain intimate with your wife, if your PCa escapes, the odds of ED are 100% after you become a statistic. Just food for thought. Good luck.

[timotur]

Your PSA doubling time is about 2.5 years which probably confirms G6 pathology. But a PSA of => 20 indicates possible high-risk disease due to spreading to LN’s, SV, or bone. For reference, I was PSA 23 with G(3+4) and a PSADT of about 13 months, and imaging found both SV and LN involvement.

[binati in reply to timotur]

This disease has so much heterogeniety that it is difficult to make most any kind of generalization. In some cases even at a PSA of 10 the PCa has already metastasized. In my case (Age 73) the PSA was 258 and DRE showed definite signs of PCa. I had a TRUSS biopsy since there was little chance that a small lesion would be hiding somewhere in the prostrate. It was definitely growing and aggressive. The biopsy showed Gleason 9/10 and MRI showed an ECE as well. Fortunately, in India we can get a PSMA Pet Scan and this showed no activity outside of the prostrate. However, it is known that very small (micro) mets can be hanging around in the pelvic nodes so I decided to take Radiation Therapy (IMRT) alongwith ADT.

This is what makes it very difficult to decide if one should stay on AS or take action. In one case it might be a low PSA and still need treatment and in another case it might just be an almost benign Gleason 6. There is lots of research going on and I am sure we will in the next 3-5 years get more definitive tests for PCa to more accurately decide on AS or treatment. Similarly, like PSMA Pet Scan there will be others which will detect the tiniest PCa cells and guide the treatment to blast them.

Best of luck to everyone. After reading so many posts in so many forums I no longer advise on whether one should stick to AS but share my experience.

[dadzone43]

PSA can be defined as Permanent State of Anxiety, especially for those on active surveillance. I fear that many men can no longer live with the anxiety and decide to take a definitive, invasive step. You have that option. But, why would you?