Trying to decide Active Surveillance ... - Prostate Cancer N...

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Trying to decide Active Surveillance vs other options

I'm new to this site and am looking for feedback on active surveillance vs radiation. I'm 57 years old and via normal checkups had an elevated PSA level that went from 2.6 in June 2017, to 3.2 last fall to 4.9 this past month. Based on the elevated trajectory of my PSA levels, it was recommended I see a urologist which I did. After meeting and discussing the elevation , we agreed a Transrectal Ultrasound and Prostate Biopsy as next steps. The results came back with T1C with 1 of 12 cores being positive and the one positive sample at 5%. My gleason score is 3+3.

My Urologist was very detailed in explaining the options and did not try to nudge me in any one direction. At this juncture the 2 options I'm considering are active surveillance or External Beam Radiation Therapy. Due to the prostate being too large, Brachytherapy is not an option. My initial thought is active surveillance.

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I had the same biopsy report as yours. Ten years ago. My most recent one, a Precision Point transperineal biopsy, gave the same report.

So, AS works well, probably for 25-35 percent of men with PCa. But, I am in Johns Hopkins very strict program, where we have regular testing. You need to research the protocols of different AS programs and follow one.

Yes, there is a prostate size limitation with seeds, but not with high dose brachytherapy, which inserts tubes and radiation temporarily into your prostate. It has very good results.

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You are the poster child for active surveillance. NCCN (an association of most of the top cancer centers in the US) guidelines state that AS is the preferred option for "very low risk" men like yourself. Make sure you sign up for a rigorous program that includes a confirmation biopsy within a year.

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Listen to your Urologist, consider discussing with aRO. My RO who specializes in Brachytherapy also indicated to me that having a large prostate my be difficult to deal with and he might not be able to reach all areas that he would want to. I understand stand your dilemma. I also have very low score only 2 cores with low risk. G 3+3, T1c. I’m 73. The decision is up to you. How you feel about having the cancer hopefully contained in your prostrate. A lot depends on your personality. Educate yourself as much as possible. Second opinions provide you with information that should help you make the correct decision for you. It would be great to have a crystal ball. Best of luck.

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I agree with Tall_Allen's statement mentioned above. If you can handle it, try the active surveillance route. Don't get overwhelmed with the long term -- just take it six months at time.

I was diagnosed in August 2017 through biopsy at MSKCC in NYC. 2 of 14 cores were were Gleason 6 cancer -- one at 1% and the other at 3%. My PSA was 6.19 and my free PSA was 24%. My prostate size was 43cc. I had a confirmation biopsy nine months later -- 1 core of 14 had Gleason 6 cancer at 2%. I'm currently on active surveillance.

It's human nature to have the reaction, "What?! I have cancer? OK, it's time to surgical remove or radiate it as quickly as possible!" But, prostate cancer is more complex than that.

If you go the active surveillance route, it's important to practice "mindfulness" -- it keeps your head in the "here and now" and away from the endless "what if?" scenarios.

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This is a difficult choice. Your young to have Pca. That is the factor that needs to be taken into consideration. My advice would be go for the active surveillance but don't wait too long. Once the cancer leaves the prostate treatment becomes more difficult.

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Your initial thought is in line with what the studies suggest and advocate. It seems to me that the main challenge is your tolerance to waiting and feeling you are "doing nothing." AS suggests that "doing nothing" is not harmful, doesn't make the cancer "worse" and it certainly protects you from the substantial side effects of any treatment you may choose. My G8 3 of 12 cores did not allow me that choice. Good luck to you.

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I sat with a friend at the urologist's office just last week when he reached the same decision. He will monitor and he will have a biopsy again in a year unless there is some sudden change in his PSA of 18. He is a good deal older than you, and age is a factor as others here have pointed out.

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Are you in UK ? I ask bc in UK they are not allowed to push you - the onus is very much on you the patient - a very extensive survey in uk concluded that radiotherapy and chemotherapy most often did not prolong life

just a few minutes ago I was speaking to my husband about my Dad who died of prostate cancer it had spread to his bones back then NHS pushed him to have chemotherapy but they must've known it was a pointless exercise and would not help or save him or prolong his life he should've just been left to live out the rest of his life and have plenty of morphine for the pain when the time came - which he did have

It's different for you as you are younger and your outlook is more positive but if I was you I would have HIFU - kill off the cancer then go for active survallence trouble is it might be difficult to get HIFU ? Good luck whatever you decide

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Thank you all for your feedback, much appreciated!

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Tough call. I was in AS at Hopkins for 7 yrs; regular PSA, biopsies, and MRI. Btw, ask for fusion guided MRI biopsy. It allows uro to sample suspicious areas better than the shot gun biopsy approach used my many uros. My numbers got worse and uro recommended treatment when PSA increased to 22 and one core 3+4.

I chose trifecta treatment based upon NCCN guidelines: neoadjuvant and adjuvant ADT, 25 fractions/sessions of EBRT; and a brachyboost. Although nerve wracking, the radiation procedures are non-invasive, fast, and with relatively few side effects. On the other hand, the ADT sucks (and not in a good way). A multitude of side effects, none of them very pleasant. My point is that, by waiting, I probably experienced more drastic and difficult treatments than I would have if I had had treatment sooner. BUT, I had good use of my parts for 7 years (the only down side was the repeated biopsies and the "not knowing when the other shoe would drop" feeling).

A few suggestions: discuss your situation with radiation oncologist and medical oncologist; get a second uro opinion. Read as much as you can. YouTube and many hospitals and universities have online videos re PC, treatments, side effects, AS, and so on. Talk with other men who have been through this (this site is perfect).

Although I'm not a MD, I'm not sure that your prostate is too large for brachy. You could get ADT for limited period of time to reduce its size. Consider EBRT as well. Pros and cons of it vs. brachy. Or combination of both.

Based upon my experience, I'd choose AS again but would have had treatment sooner given the rising PSA. Tough call, cost1962. Good luck to you. You're not alone. Keep us posted.

EdinBaltimore

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My opinion is AS, no confusion at all. Some professionals consider G6 as something other than cancer, unlikely to cause trouble, so do more research.

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Your situation fairly screams active surviellance. You have a golden opportunity to avoid all the side effects that go with any treatment. My advice is relax and read up on treatments paying special attention to the side effects of each type of treatment. With learning, any fear you might have will be addressed and you will likely learn that active surviellance is a great option.

All the best.

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AS is what you should first consider. Most men, almost all men, with Gleason 6 will die, yes, but from something other than prostate cancer.

You haven't had a mp 3.0T MRI yet have you? You didn't mention having a MRI. How was the diagnosis of a T1c tumor arrived at? You should have a 3.0 MRI by someone such as Dr. Busch in Chattanooga, Tennessee. He is very experienced and can biopsy in real time using the 3.0. He is also conservative in the number of biopsy cores he takes. Dr. Busch is a doctor of radiology with vast experience. Don't even bother with a 1.5 MRI. Pick who you wish to. I only suggest Dr. Busch as an example because of his experience. I have not been to him but he is revered by many men with prostate cancer who have been to him. My urologist told me to my face that with the 1.5 MRI he was unable to distinguish between a scar or a lesion. I wouldn't rely on an ultrasound as the imaging technique.

To prepare for a possible biopsy insist that either Rocephin or Cefdinir be used rather than any fluoroquinolones which caused me perhaps permanent joint, tendon and ligament damage from old injuries. I might have gotten off easy though. One of the side effects of the fluoroquinolones is aortic aneurism. That would be nice wouldn't it?

If AS is the course you decide upon it will be more successful if you are careful with your diet and take supplements to support your diet.

A T1c is very treatable. Have you heard of FLA or HIFU? At this time, although much newer, FLA is a more accurate treatment than HIFU has been. HIFU does have a long history of success in many countries whereas FLA is quite new but has produced some quite excellent results. The side effects with these treatments are quite low compared to any other treatments. Done in hours and usually a catheter is necessary for a few days. Take it a bit easy while healing for several weeks and go back to living.

Currumpaw

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I think you're getting ahead of the game here. AS should be sufficient at this point. Also HIFU is controversial and at any rate I don't see any direct treatment required at this point.

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Glad to hear you are beginning with AS. I mentioned HIFU and FLA as treatments only because many men just "want it out!!". What I said about HIFU having a long and successful history is true and that FLA, although new as a treatment has had many very good successes. The success of both is dependent upon who performs them. I follow both treatments.

At this point, diet, supplements and a good MRI at appropriate intervals should suffice. PSA can be an indicator but can fluctuate for many reasons. Rely on the MRI more than a test that can fluctuate greatly within 4 days. That happened to me. It fluctuated about 20%. I made no changes to diet or supplements. I used the same lab. My blood was drawn by the same nurse.

Heed what I said about fluoroquinolones. The FDA issued stronger warnings about the quinolones.

Bets of luck,

Currumpaw

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I believe biopsies are the best way to continue AS, not repeated MRIs. Once the Gleason gets to 7 and with a continued regular rise in PSAs, RARP is I believe the best way to treat. "Get it out" is exactly right. Incontinence and ED are side effects, but at least in my case incontinence was short-lived and not severe. The ED improved after about a year, with nerve-sparing procedure. HIFU is still controversial.

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Hey jeff85705!

An aggressive procedure such as a biopsy is not the best way to stay on AS. Biopsies should only be done when something is seen. An in bore biopsy done using a mp 3.0 MRI is the most accurate today and is the only type of biopsy that a man should be subjected to. Biopsies can cause damage, erectile dysfunction and a rising PSA due to inflammation. A man can also get sepsis from a biopsy procedure. The drugs commonly used to protect a man from sepsis during biopsy have been proven to cause severe side effects,. I'll say it again. The FDA has issued much stronger warnings about fluoroquinolones maybe because they have been proven to cause "minor" side effects such as tendon, ligament and joint damage as well as aortic aneurisms, just a minor blip! Cefdinir and Rocephin are two drugs that can be and have been successfully substituted for the fluoroquinolones by urologists that understand the harm that fluoroquinolones can cause their patients.

One cannot always reverse or heal the damage from a biopsy especially saturation type biopsies where the image used is produced by an ultrasound screen or a 1.5 MRI which is rapidly becoming yesterday's imaging technology. An in bore biopsy using a mp 3.0 MRI reduces the need for unnecessary biopsy cores. If contrast is used heavy metals testing can be done. Should the gadolinium level come back high chelation therapy can greatly reduce the gadolinium with side benefits, lowering all heavy metals but also clearing the arteries a bit. Look at the "Tact Study".

What Gleason 7 are you referring to? A 4+3 or a 3+4? There is quite a difference in risk. Dr. Klotz of international fame speaks about the Gleason grades and spends some time explaining the difference between the two Gleason 7's in a YouTube video.

Few urologists in the US are going to advocate for HIFU. Doing so will cut into their revenue flow. HIFU has been used as a treatment in other countries since 1995. Granted it isn't for every man it is dependent upon the scope of his cancer. HIFU is an excellent choice treat a defined T1c tumor confined to the prostate capsule without complications. Should the cancer return in the future all types of treatments are still possible. I believe it was T_A that posted a link to a study about the outcomes of men who had HIFU and who had RP. There wasn't much difference except that those who had HIFU were still sort of at the beginning and could still choose whatever type of treatment they wished.

FLA is relatively new and those who practice it are quickly gaining experience and dramatic successes. Part of FLA's rapid success curve is that it is somewhat similar to HIFU. In my opinion, many of the lessons learned from HIFU are transferable to FLA. Those I have spoken with who are knowledgeable about FLA have said that FLA is much more accurate than HIFU. I believe there may have been some advances in HIFU closing the disparity in accuracy between the two treatments.

I'm glad you are well and happy with your results. Many just need peace of mind more than retaining as much as they can, for as long as possible. They are the men who tell their doctor to "get it out!".

Best wishes for your continued recovery and long health!

Currumpaw

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That's your opinion. Biopsy is not "aggressive" and is superior, IMO, to MRI. Not sure what you mean by "when something is seen." With any invasive procedure there is risk, but the benefit to risk ratio for an ordinary, common biopsy is very good. It showed my Gleason 7 and it helped me decide on surgery. Your position on biopsy sounds a bit hysterical. I continue to recommend biopsy.

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Hello Jeff,

I read your reply. I do not deal in opinion including mine or will I accept your opinion. I rely on documented facts from studies and scientific experiments. In science there is a process to follow that establishes a truth. First is the hypothesis followed by theory which is verified through testing and compilation of empirical data. If the theory is proven it then becomes law. Perhaps you might scan the study below.

Can Prostate Biopsy Cause Erectile Dysfunction? | Prostate ...

grossovertreatment.com/can-...

Links to other very possible complications from prostate biopsy--prostatitis!

Infections Linked to Biopsies for Prostate Cancer - WebMD

webmd.com/.../news/20111005...

Infections After Prostate Biopsy Continue to Rise - Renal ...

renalandurologynews.com/......

Fluoroquinolones are deadly. That is what I was given for four biopsies, an ablation and as a sort insurance policy a week after my ablation. I have still not recovered from the damage fluoroquinolones have done to me. The evidence of that is in bone scans taken years apart. I have been diagnosed as having been damaged by these drugs by a chiropractor with decades of experience and my when I asked my oncologist when I could expect the damage from the fluoroquinolones to be repaired he loaded the results of my bone scans in my patient profile. He told me to read them when I got home. It wasn't a good read. The last bone scan showed damage, likely permanent, to my shoulders and back which wasn't evident in the first scan.

Fluoroquinolones are now less effective than the past as bacteria become resistant to them.

This link is about Fluoroquinolone side effects such as aortic aneurism, (a minor side effect), ligament, tendon and joint damage to name just a few.

FDA updates warnings for fluoroquinolone antibiotics on ...

fda.gov/NewsEvents/Newsroom...

Accuracy of biopsy? Depends! A biopsy done real time, in bore using a mp 3.0T MRI is very accurate depending on who is doing it.

I spoke with a radiologist at Beth Israel Deaconess a couple years ago. At the time they were using an older GE 3.0 but for men being imaged for prostate cancer. According to their site this combination resulted in a high 90% accuracy rate as verified by post surgery pathology.

I have had a well respected urologist of quite some fame tell me to my face that when using an image from a 1.5 MRI fused to an ultrasound screen to do an Artemis biopsy that he is unable to distinguish between a scar and a lesion. previous biopsies scar the prostate.

A link about the accuracy of the now infamous 12 core TRUS biopsy:

How reliable is 12-core prostate biopsy procedure in the ...

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

An excerpt from the report on the study.

"Conclusion

The detection rate of prostate cancer with the 12-core biopsy technique in patients with proven prostate cancer on radical prostatectomy specimen was considerably low when repeated in the same way ex-vivo. Effectively, repeat biopsies done in patients with persistent PSA elevations and other biopsy indications can still demonstrate negative cancer findings despite the fact that these patients have prostate cancer. The detection rate of prostate cancer is higher if 12-core biopsies are repeated in patients with younger age, higher PSA levels, PSA density and Gleason scores and in patients with smaller prostates and lower free/total PSA ratios."

I am not a doctor. I do not recommend not taking a drug or a specific procedure. I only share information that I feel will be helpful.

Your comment about my position on biopsy being hysterical was insulting to me. The negative connotations that a word such as that implies and linking it to another! I wouldn't label or brand anyone on HealthUnlocked in such a way. Please don't do that to me or anyone else on this site again.

At one time I was elected as the chief of an eighty some member emergency response team dealing with HAZ MAT response and confined space rescue. It is still gratifying that many of those who didn't like me voted for me because I had proven to be cool under pressure. If someone tends to be "hysterical" are they one of the first choices to put in a level A suit with 30 minutes of breathing air supplied by a SCBA to respond to a chemical spill?

Currumpaw

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My opinions are based on factual research and are informed, not just beliefs, not groundless. There is lots of research and information good and bad on the internet. I read only accepted sources for my decisions.

Your source :grossovertreatment.com by its very name becomes suspect. Who are these people? ED from biopsy? Only if the faraway nerves are somehow cut, virtually impossible.

Basically, and I may be wrong, it seems you have taken an a priori conclusion that biopsy is bad, then found sources to back up your conclusion. Any invasive technique, even as safe as prostate biopsy is, has risks. You have to look at the benefit-vs.-risk ratio to determine overall efficacy. This article claims benefits outweigh risk:

radiology.ucsf.edu/blog/abd...

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After reading many of the other comments, I tend to agree with them.

Keep watching n'carefully' to ensure it doesn't run away on you and become more complex, needing an aggressive intervention.

The PSA doubling time is one to put some heavier emphasis on.

Further testing (IF indicated) would be the cautionary route to take.

Take care and may your 'watching' become a low pressure observation with little to no consequences.

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Welcome to this club that no man wants to join! Your PSAs do show a steady increase, which can be indicative of cancer, as was borne out by your biopsy. With a Gleason of 3+3, and the rest of your biopsy result, I would, if I were you, go for active surveillance. I don't see a need for EBRT or surgery at this point. I opted for RARP, but I had a T2c tumor with a Gleason 3+4 (actually 4+3 after pathologists dissected the prostate postop) and PSA growing steadily and at 10.2 at surgery. Your Gleason reveals a non-aggressive Ca, at least for now. Just insist on PSA every 6 months at least, and another biopsy in a year. That's what I would do. Also, you are fairly young (57), and PSA increase can be at least partially caused by your enlarged prostate. Good luck!

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I think you can consider AS. As the others have said, your team needs to stay vigilant on staying on top of your data going forward. I think a second option to Johns Hopkins is a good start. If you can swing the cost of a genomics test, that would be helpful to give you a piece of mind. Genomics testing is pretty expensive and you should ask your insurance company and the genomics company about cost. I consider that voluntary. Another good idea would probably be to have you do a 3T mpMRI within 6 months or so just to check and a confirmatory bx within a year. Quarterly PSA's or at least every 6 months. Of course things can change. I've been on AS for 2 years and my data is not as nice as yours. And remember AS is "active" and is not "waiting and doing nothing". :)

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So I am not sure what the specific tests are but my brother in law had prostate cancer very similar to what you describe and was also diagnosed at age 57. He was treated at one of the Mayo center hospitals (I am not sure where you are located). He paid out of pocket (they were pricy, close to 4k total, but may be covered by insurance now) for several genetic tests of his cancer and himself and they indicated that his Gleason 6 cancer was more potentially lethal than they would have suspected initially. It changed his mind from active surveillance to open prostatectomy. He is still good 5 years later and does not regret his decision at all. If you have access to additional genetic tests and are able to get them I would. In his case they made the decision for him.

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gleason sore of 3+3 is early on and you should look into the 5 treatment radiation which some call it Cyberknife...do it now, your numbers will go up soon.

Good Luck your in a good position to stop it.

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