Treatments for Gleason 6 at 42 years old

Tony Crispino said...


Excellent advice. And perhaps the best use of delaying therapy whenever possible. It gives a man time to make educated decisions. I was a 3+4=7 guy at biopsy at age 44 and definitely felt that "get it out, ASAP" pressure. And with my 20 PSA that was the decision we made in 2006. But I was told back then that I did not need to rush to therapy but I did. Given my options in 2006 that was probably the only real choice I had. But I had cores at 90% invaded. There is nothing wrong for a guy today at age 42 deciding in immediate therapy. But a 3+3 guy has new testing options that were not available even two years ago and non-existent when I started out.

I asked my colleagues at ASCO about men having more aggressive prostate cancer in their 40's and the common answer is that we don't know that. There is no study that proves this. Instead we have an era today that will freely screen men in their 40's and we are finding the disease more so in the G6 early G7 ranges. Yes there are more men with higher grades discovered but there are more men with G6's discovered as well.

Yup. We need to keep a balanced approach when the new guys come in seeking assistance. I think the forum is pretty well stacked with those of us who decided to treat, but we can all learn.

There is something inherently unsettling about walking around with the "Big C" and watching it warily see if it gets out of its cage. That initial urge to "do something" is hard to control. That's what brings people in here to discuss it.

It bothers me sometimes that good surgical outcomes seem to be downplayed in here. There is a heavy focus on the side effects and regret. I won't ignore that and I would never minimize somebody else's discomfort, but that is not the whole story. There are those of us that made that informed choice and we did slay that dragon with decent outcomes. Many of us went from a GS 6 to 7 on the final path report. Men need to know that as well.

All treatment carries risk, but so does AS. I just don't think we should be giving the impression that surgery will guarantee misery. Mine did not.

I'm not opposed to AS and I'm not chomping at the bit to have everybody go under the knife. Neither one is all bad and neither one is all good. The key is a balanced view.

Agreed.

On one hand, it is good to point out the possible side effects and the downside of treatment. On the other hand, don't lead people to believe good outcomes are a rarity. THAT is a serious disservice to our brethren.

I'm not seeing anyone who is "anti-treatment." Who in the world would be "anti-treatment," unless it was against your personal, private religion, or something like that.

What I see is some men diagnosed with one set of individual, unique case conditions for whom treatment is a clear-cut next step, sometimes (frequently) irrespective of the risks of treatment. They frequently have to, however, make a decision about what "flavor" of treatment to choose from, but that's subject for another thread.

And what I also see is other men diagnosed with a different set of case conditions for whom the risks of no immediate treatment should be weighed along with the risks of treatment. There has, unfortunately, been a widely recognized tendancy on the part of some physicians to rush patients to treatment; even patients in this second category. The medical industry leaders recognize this past behavior, and in fact recognizes it as a "bad" behavior which it needs to work on as an industry to change  Has anyone NOT read any of the multitude of articles on this?  It's something we all need to be aware of. Now we can have discussion on how widespread this "bad" behavior was, but that's a distraction to the main point. The point is that men in this category have a decision to make.

I've read the doctor's recommendations (in the NCCN Guideline), and there's no "anti-treatment" sentiment. Active Surveillance is listed right next to several treatment options as the choice for low-risk men. This notion of "anti-treatment" seems to be injected here to create a distraction, but since nobody here actually seems to be "anti-treatment," it serves no purpose.

Post Edited (JackH) : 5/14/2014 12:54:23 PM (GMT-6)

davidg said:  There are some here who say that A G6 should not be treated regardless of age

Counting the months of lurking, I've been here for over a year.  I've got to say that I have NOT seen what you just wrote.  What you just wrote seem to be an exageration of what I have seen some folks write, but truely quite different from what they actually said. 

Can you cut/paste a quote from any particular thread.  Perhaps more importantly, it certainly is NOT in this thread...

JackH, well said. It is an unhelpful over simplification to characterize our forum into the camps of "pro-treatment" and "anti-treatment". In almost 6 years at HW I have yet to see a poster suggest that every patient, regardless of diagnosis, should avoid treatment. Now THAT would be anti-treatment!

What HAS changed over the years is the feeling that almost all of us had 6 years ago that everyone who is diagnosed should get some sort of treatment. With the advent of better testing, better data and the experience of excellent AS programs it is apparent to many of us that some men do not need immediate treatment.

Treatment of any kind has the potential for side effects - some of them devastating. Of course some men exit treatment doing just fine...I am fortunately one of them as are many post-surgical patients. But, saying someone will be "just fine" after their treatment is still a hope and a wish rather than a data driven statement. It is certainly true that excellent doctors get better than average results. But it is also true that there are huge numbers of men who have had both surgery and radiation who suffer from onerous side effects. Asking men to THINK before they jump is good advice, IMHO.

Jim

Well if you're looking for me to name names and make lists, not happening. I'm European and that's been frowned upon since the mid 40s. Here are two quotes I got from a quick search. Some here have been very clear about G6 and even some G7 men not needing treatment and that if treated, they are being over treated. They seem very convinced about this belief so maybe they'll confirm for you that they've in fact stated that such folks don't need treatment.

But here are some choice quotes:

"I still think the day will come, insurance wise, that men that should be on AS and need to be on AS, will not have their invasive treatment choices paid for by insurance. Probably going to take that drastic an action to really start cutting down on the trueness of overtreatment."

""A perfect storm of clinical evidence and economic reality has arisen in which urologists and radiation oncologists need to examine the evidence, examine their souls, and start to carefully look at every new patient asking, before anything else—is treatment really needed at all? If it is not, and that will frequently be the answer, then they must be prepared to lead the patient along the less financially rewarding and decidedly unglamorous path of active surveillance. "

Thanks to everyone for all of the input. I wish I could respond to each individually, but that's not really possible. The one thing I keep coming back to is the Detroit study (I think there have actually been several at this point) that analyzed prostates taking during the autopsies of men who died from trauma (and had no diagnosis of prostate cancer). They found that 10% of men in their 20s, 30% of men in their 30s, 40% of men in their 40s, 45% of men in their 50s, 70% of men in their 60s had prostate cancer. Obviously, those numbers are far less than the numbers of men who are diagnosed and treated. My doctors tell me I should have my prostate removed. But if I should do that, then so should 40% of all men in their 40s, so I wonder if that's really the answer.

Of course, the difference is that I know about mine, and most other men in their 40s with prostate cancer don't know. AS seems like what I should do, unless a more serious PC is found down the line. But I understand the psychological reasons for getting it cut out. Also, you never know until they do the post op pathology what you really had. Surgery brings SE, but it can bring comfort and does reduce risk of dying from PC, even if that risk wasn't high to being with. So there are valid reasons for someone like me to get surgery, and I may yet do it. But right now, I'm leaning away from surgery.

AS is probably what logic dictates I should do, but I've had issues with biopsies and I don't really want one a year for the next 20 to 30 years. I did not have any infections with the two I've had so far, but I've read accounts about how bad those are, and that's a significant factor. Also, I just don't know if I can handle doing nothing about this for the rest of my life, even though it's certainly logical to take that course. Plus, there is some risk is not treating. I am young, have a wife and a 3 year old, and if I do AS to some extent I am putting the risk of SE ahead of risk of dying. If it were just me and no family, I'd have an easier time doing AS.

I am still looking into TFT, and I am leaning towards taking that first step, a mapping biopsy, in the near future. I think that would be of significant benefit as a diagnostic tool even I don't end up doing the TFT. Aside from Ziggy, who I have already heard from on this, has anyone else had a mapping biopsy? What was your experience? My Dr in Dallas (and would be surgeon, if I go that route) is concerned that the scar tissue from it could hinder surgery if that is done later. The folks in Colorado who do the mapping biopsy and the TFT are not concerned about that. Really, like true downside of it seems to be the time, expense, pain in the ***, and a catheter for several days. I should mention that I've had an MRI with an endorectal coil (not fun), but I'm told the mapping biopsy would tell me a lot more than the MRI. Does anyone who's had a mapping biopsy have any thoughts on this?

Apparently, I made a wrong assumption regarding radiation. I assumed that since the prostate is left in place, even if my original PC is eradicated, another PC could pop up in the future and I wouldn't have the surgery option to deal with it. However, I have now been told that there is no evidence that a new cancer can arise in a radiated prostate. If that's true, is it true for both external beam and seeds? And if it's true, radiation (particularly seeds) seems like possibly a good option for me. I know there is some risk of secondary cancer, but it's very, very small, right? And I've heard that SEs (particularly ED) are much better with radiation than surgery. Is that true in everyone's experience? What are the pros and cons of seeds versus external beam? I am a little new to the radiation idea, and have not met with a radiologist yet. Tudpock (Jim), have you not had any permanant SEs from seeds?

Post Edited (JRK) : 5/14/2014 2:21:42 PM (GMT-6)

Jason, thanks for getting us back on track. This is, after all, about you and not our philosophical debates.

With regard to the "one a year biopsies"' I certainly understand. Depending on the AS program that frequency and protocol is changing. If you continue to seriously consider AS, then it good due diligence to discuss your case in depth with an experienced doc who is part of such a program so that you know what to expect rather than depending on our musings.

Re the mapping biopsy for TFT, I do not know if that would provide any issues re a future surgery. I know that Ziggy has been reassured that it would not and that all options are still on the table for him. Perhaps others will weigh in on this. I know that many AS programs require a "confirming biopsy" anyway, so I'm guessing that the mapping biopsy would suffice for that...but, then again, I'm just guessing so you will want to confirm that.

Re radiation, I believe you have been given the correct info about new cancers in irradiated tissue. There should be no difference between IMRT or brachytherapy.

SE's are generally better with an expert no matter what treatment you choose. On average, radiation does yield better results re continence and ED.

With regard to my specific brachytherapy results of which you asked, I have zero side effects except for reduced ejaculate. Everything else is the same. Of course that's no guarantee for anyone else. You can read my long winded journey by copying and pasting the link in my signature. Also,if you are seriously interested in brachytherapy a more recent seed recipient is AYooper who no longer posts here. Email me and I can put you in touch with him; he did significant research and is happy to send you copies of applicable studies.

But, if you end up seriously considering radiation, we have members who have had HDR brachytherapy and SBRT who can give you lots of help both before and after you consult docs in those areas.

Finally, and back to AS, there have been some excellent videos posted on HW by both Dr. Klotz and Dr. Myers that I can dig up for you if you are interested.

Jim

JRK - as Allen has pointed out, some AS program do not require yearly biopsies. Also, not sure what issues you had with the biopsy but once I was knocked out mine was a breeze.

Knowing about it early and being given the opportunity to act on it, with a good AS program or treatment is critical. That's why testing is critical. Frank Zappa has an interview where he was asked if he had any regrets and he said he just wished he knew about it sooner so he could treat it. Nobody questions Zappa.

Lastly, you say "surgery brings SEs". The only guaranteed SE is dry orgasms. Many men have minimal SEs and most overcome their SE relatively quickly. Some are less fortunate. Some, have virtually no SEs at all from the get go. SEs are a possibility for sure, but not at all guaranteed or permanent in most cases.

With all your options you sound a little overwhlemed on what direction to take. Perhaps an oncologist can help guide you.

jrk,
after reading your posts there is no doubt that you have a firm grasp of your options and I'm sure whatever you decide you're going to do well. I'm not trying to influence your very personal decision but wanted to chime in with my experience. I'm one of the guys that hung around here for a couple of months and now check-in occasionally, I was 55 and in great shape when I had my surgery last September and things went well, very few leakage issues and no E.D (and lost no size)I had nocturnals with the cath still in. that being said you have to prepare for the worst and hope for the best.
my decision to have the surgery was based on my age, wanting a path report and being in good shape.
good-luck and good-health,
carl

David,

Since your point is that studies are no sooner published than they are contradicted, I can amplify your point by linking to a study the following year that reached the opposite conclusion:

"CONCLUSIONS:

• A delay of >60 days is not associated with adverse pathological outcomes in men with localized prostate cancer, nor does it correlate with worse BCR-free survival. • Patients can be assured that delaying treatment while considering therapeutic options will not adversely affect their outcomes."

www.ncbi.nlm.nih.gov/pubmed/22093486

davidg said...
Jack you're using the quote I posted out of the context I used it in and referring to doctors as "snatchers" is good for selling books, but perhaps not ideal to accurately describe an honorable group of professionals who help us on a daily basis.

Fact is there are prostate snatchers out there. My original urologist told me when I asked what would happen if I did nothing? He answered I'd be dead in 7 years. Now look down at my first biopsy numbers and tell me how that isn't a bald faced lie? Even in 2007. Yes there are doctors more interested in $ than their patients. Not all of course but enough to be aware of and to protect yourself by education. I still wonder how many low risk guys were cut into 8 weeks later out of fear caused by this medical bullcrap artist to this day? Thank god I'm not the type to panic.

It is a tough decision. I personally would try out AS and lifestyle modification but I can understand the other point of view. You may want to watch some of Doctor Myers videos on AS:

http://askdrmyers.wordpress.com/

If it is within your budget, it may even be worth a consultation with him to get his opinion. After all, either way you choose it will be one of the most important decisions you will ever make.