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Revisiting AS

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Posted 2/5/2013 6:31 PM (GMT 0)
Now, this doesn't concern me personally, as I am approaching HT time for sure.

But, if my stats would be different, I think it would be difficult for me to even think of doing AS.

I know I am having a hard time currently getting this darn PSA every month (I am off to get those results in a few minutes). I would have an equally hard time doing that as part of an AS regimen... and then I would still have to do regular biopsies, right?

But my big concern regarding AS is:

But when I keep reading about surgery guys finding that their pathology results are a notch worse than their biopsy results (when it changes it always seems to be for the worst), that would worry me.

Comments?

Mel

Posted 2/5/2013 7:24 PM (GMT 0)
I think AS definitely requires some personality traits that we don't all share. I don't mean to place a value on those traits as some have in the past.

I also think age has a lot to do with it. I got cancer at 40, besides that I had G7, it made little sense to me personally given my age and the fact that i'd have to treat it sooner or later.

I wanted to maximize my chances of recovering from potential SEs and am happy with those results.

My dad is dealing with a rising PSA and doing more tests soon.If he were to discover that he has cancer, depending on the grade, I would urge him to consider Brachy and if possible AS.
Posted 2/5/2013 7:26 PM (GMT 0)
Comment? For all the discussion that’s taken place, I would have thought that someone who has dealt with prostate cancer for three and a half years would have a better understanding of the risk of progression for low risk disease.
Posted 2/5/2013 7:41 PM (GMT 0)
Every doctor we consulted with during our decision-making process advised my husband that he could easily do active surveillance for 1 - 5 years. All I can say is "Thank God" that he didn't follow their suggestions - with the very aggressive PC that was discovered by pathology after his RP, his chances would have been much worse if he had waited that long to be treated.

Gleason 6 with only a small % of 2 cores positive on biopsy is normally defined as 'low risk' disease, and it probably is low risk for the majority. My husband's case looked 'low risk', but it certainly wasn't! He's doing fine now after 3 very difficult years.
Posted 2/5/2013 7:44 PM (GMT 0)
the thing I have learned more about AS is that it involves a very aggressive and dedicated routing to actively monitor any potential growth of the cancer. Theoretically, if done properly, it could minimize the chances of "missing the boat". I'd hate to live with that routine but it might be great for others who qualify.
Posted 2/5/2013 8:11 PM (GMT 0)
When I decided to have my surgery was when the wife and I went to my doctor to get the results of my fourth biopsy. My third biopsy had come back with one core Gleason 6 and only 3-5 percent of that one core affected. I had had recuts made from the samples from biopsy number three and the second pathologist scored it Gleason 7 (3+4) -- based on the new slide that was made from that same positive core. Both pathologists commented that there was so little cancer seen that they had almost missed it. After the second opinion on biopsy number three I was a low-intermediate risk with the smallest possible cancer volume reported. I was a good candidate for AS despite being a GS7.

I had talked to a second surgeon and he had said that he would be glad to operate on my but he strongly recommended AS. I wasn't particularly happy to hear this. After three of them I had never learned to like biopsies very much, I had occasional symptoms of prostatitis which was uncomfortable, and the medicine I took for my BPH had annoying side effects. Mr prostate was starting to seem like a high-maintenance organ and I was less thrilled than you might think to hear that I could keep him. I went for a second opinion and d*n*ed if I didn't get a second opinion. Oh well.

So, to get a bit more data to help me decide my uro did a fourth biopsy and here I was to get the results. Bad news. They were negative. No help what-so-ever with my decision, especially considering that the blood they drew before the biopsy showed my PSA had risen from six point something to eight point something. I was exactly stuck on the fence. Perfectly balanced. A negative biopsy but a rising PSA. On the other hand my prostatitis had always made my PSA a bit wobbly. It was agonizing. My uro told me I would have to decide. It would be unethical for him to help me.

After agonizing for quite a while, sitting there in my urologists office, I decided that going ahead with the surgery would make my wife less fearful. Her dad had died of prostate cancer and the AS regimen (which didn't sound like that much fun to me either) would constantly remind her of her dad's continued progression and decline.

As it turned out my pathology report came back rather dire. I jumped from a low-volume, low-intermediate risk category to a high-volume, high-risk category. My treatment plan was adjusted. Adjuvant IMRT and ADT were added to it to improve my odds for a durable remission. From this point forward I didn't have a lot of agonizing decisions to make. All of my doctors knew what came next and they simply told me what I would be doing and why. In retrospect they made good decisions and I am very hopeful about my prognosis but I was simply out of my depth at the time, too freaked out to figure it all out. I simply trusted them. I still do.

So, when I advise men with low risk PC to consider AS, as you might imagine, complicated things are going on in my otherwise-generally-inert head. I am in effect telling them that their chances of being me are small and statistically they are better off, on average, to make decisions that would have been bad, bad, bad for me. I have this hysterical voice in the back of my head shouting in tones that remind me of Charlton Heston in Soylent Green but I put on my Mr. Science hat and sit on him.
Posted 2/5/2013 8:15 PM (GMT 0)
Man, this thread makes me nervous again. Perhaps I made the wrong decision. At 58, 3 out 14 cores G6, low percentage, I opted for AS (Dx Aug 2012). I am just hoping that a new treatment comes along with less SEs than what are available at this moment. Started to realize that new developments come very slowly and I may not have enough time to benefit from them (may have to go with active treatments prior to new developments).

Most of the time I am not thinking about my PCa, but onece in a while it creeps in. My 2nd PSA is coming in the next 10 days (six months after Dx), I believe DRE and Color Doppler Ultrasound are also part of the program every six months. I am not looking forward to it, however, follow up PSA tests seems to be automatic regardless of which treatment one decided on, it becomes part of your life forever.

mP

 

Posted 2/5/2013 8:17 PM (GMT 0)
Delaying or avoiding primary treatment is an individual decision based on personal psychology and the severity of the prostate cancer.

I think there is overlap between AS protocol and what a person might do to try to retard the progression of their cancer.
The diet that Ornish recommended (vegan) slowed the progression of prostate cancers in clinical trials.
Snuffy Meyers recommends a Mediterranean diet.
Some of the supplements and diet that would be used in AS could be used after primary treatment to delay recurrence.
The supplements, diet and off-label meds could be used after recurrence to retard progression of the cancer.
Just because a person has been treated does not mean that there is no benefit to a diet and supplement protocol. Prophylaxis can happen before or after primary treatment.
Posted 2/5/2013 9:26 PM (GMT 0)
Hi Mel,

You are quite right that there a significant percentage of times (I've seen 30% referred to) when the post-op pathology on the removed prostate shows a HIGHER Gleason Score (and sometimes the staging) than the biopsy showed -- because the biopsy report is just an estimation whereas the removed prostate gives a definitive answer.

Also, there are about an equal number of times where the post-op pathology LOWERS the original Gleason grade.

The main thing is whether a person wants to take the chance that the cancer really is non-aggressive as indicated by the biopsy. Also, there are many people who simply cannot live with the knowledge that there are cancer cells in their body & want treatment right away.

All in all, from some of the other stories in this thread, I would strongly consider going with some form of treatment. Just my humble opinion, though.

Take care,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.
Posted 2/5/2013 10:30 PM (GMT 0)
Maybe it isn't what the words mean exactly, but I feel as tho I am on AS, or maybe CS ( constant surveillance ) since my diagnosis and subsequent treatments. PSA at least every three months, visits with my local urologist as well an oncologist at Cleveland Clinic.

I read copious articles, check in on HW, and monitor every pain, twitch, or symptom I may imagine. I'm not obsessed with it, and work very hard to live the Good Life, (like GFMPH in April ), but I am always in surveillance mode. Obviously with a Gleason 9, never had the option of not doing a treatment immediately, but I probably will never be able to sit back and say, great, got that PC whipped.

Goodlife
Posted 2/5/2013 10:33 PM (GMT 0)
Casey:

>>>>>>>>>>

Comment? For all the discussion that’s taken place, I would have thought that someone who has dealt with prostate cancer for three and a half years would have a better understanding of the risk of progression for low risk disease

>>>>>>>>>>

Wow, Casey, every so often that little condescending streak shows up.

Frankly, it is BECAUSE of all the discussion that I would have some doubts about AS.

I suggest you read some of the other remarks in this thread.

Note that I am not against AS at all. I am just voicing some of the concerns I WOULD PERSONALLY HAVE

Mel

Posted 2/5/2013 10:44 PM (GMT 0)
i did AS for several years because by the time i had my PSA checked for the first time i was diagnosed with high volume G7 cancer. AS worked for me because i was oblivious cool

my problem with AS is what if the doctors are wrong?  what if you waited six months too long to act and your cancer had spread to the lymph nodes?

i guess what i'm saying is i would opt for treatment sooner rather than later because that's the way i'm wired.

ed

 

Posted 2/5/2013 10:56 PM (GMT 0)

compiler said...
Casey:


>>>>>>>>>>
Comment? For all the discussion that’s taken place, I would have thought that someone who has dealt with prostate cancer for three and a half years would have a better understanding of the risk of progression for low risk disease
>>>>>>>>>>

Wow, Casey, every so often that little condescending streak shows up.

Frankly, it is BECAUSE of all the discussion that I would have some doubts about AS.

I suggest you read some of the other remarks in this thread.

Note that I am not against AS at all. I am just voicing some of the concerns I WOULD PERSONALLY HAVE


Mel

we are all caricatures...
Posted 2/5/2013 11:04 PM (GMT 0)
I couldn't have done it. Life circumstances, 42-- 2 kids under 4 with one in the oven, younger wife--- 11 years my junior... no way. Surgery was in my near future even from diagnosis.

Surprisingly to me, the circumstances to one's life at the point of the decision are rarely discussed here. It's generally about effectiveness and SE's, which I understand, but it's the circumstances that often dictate the decision. It was the case for me.

I'm a G6 with biopsy and surgical pathology from Hopkins, so I'm confident in my results. I had a nodule tho, so that alone scared the bejesus out of me considering my circumstances. I have young kids to raise and a young wife. Getting it cut out and living with and working thru any SE's was more critical than me trying to figure out at what point it should be treated and trying to pick the right time before other troubles and problems ensued.

I think I maximized my longevity by just getting it out and that is what meant the most to me under my circumstances.

Don't get me wrong, I'd like to have a boner with no help, but being alive for a long time for my kids and wife was far more important to me than a weekly, on-call stiffy.

I don't mean to make light of the decision, question, or the decision making process of individuals, but circumstances play a huge role. If I had been single, I might have chosen AS for a time. But given my circumstances, I would have been too worried that my 6 would have escaped my "control." I acted given my circumstances because I thought my situation was controllable at that point. I was uncertain what waiting, even with really active AS, might have lead to.
Posted 2/5/2013 11:13 PM (GMT 0)
Dude:

Absolutely. It depends on your psychology (how you are wired) and personal circumstances at the time certainly enter into it.

Mel

Posted 2/6/2013 12:35 AM (GMT 0)
I would have no problem going on AS. Knowing what I know now it would be my first choice if I had the stats. I would also do Color Doppler as part of the AS program as I believe it can identify any progression. I was on involuntary AS for 10 years and it was uncomfortable, but very manageable. With a 50% chance of ED and a good chance of incontinence from treatments, I can take a little anxiety. I have about the same anxiety level every time I take a PSA test after treatment so what is so different about AS? In one case you are anxious about progression and in the other you are anxious about reoccurrence.
I also think about risk differently than most. My risk in combat of dying was 10% and getting injured about 150%, and I think that colors my thinking a lot. I don't mind taking risks especially when the odds are on my side and the odds of AS are very good with those with low risk stats and the odds of identifying any progression and having a successful outcome are even better. So I would go with those odds in a heartbeat vs the odds of having permanent side effects from a treatment for something that has an extremely low probability of killing you.
JT
Posted 2/6/2013 12:26 PM (GMT 0)
Flbeachgal,

Your husband's case is a textbook example of how AS is really a crap shoot. All his doctors suggested AS for up to 5 years and as you know now his outcome would have been much worse had he waited. I was DX with a small G7 in one core and G6 in the other and my URO didn't suggest AS so I never considered it. My  pathology showed that my prostate was 60% tumor involved all G7 3+4 which was completely counter from the biopsy. My URO told me that if I had waited two years for treatment the PC would most likely had escaped the organ and my outcome would have been much worse. 

Posted 2/6/2013 5:48 PM (GMT 0)
It is pretty rare that a growing cancer will not be identified under the normal AS monitoring protocols rather quickly. Most progressions are identified at the second followup biopsy as by far the largest failure of AS is the primary biopsy failing to pick up more aggressive cancers. there have been numerous studies that indicate that delayed treatment has the exact same results as immediate treatment and that no treatment has only a 5% worse result after 20 years. There is no evidence at all that AS under careful monitoring results in any less effective treatment if cancer is found to be of a higher grade or has progressed.
This may not sound logical to many, but the facts are the facts. It is unfortunate that many have an unfounded fear that their low risk cancer will spread if not treated immediately. 70% of all AS patients show no signs of progression after 12 years (that's the longest data we have currently) and those treated have the exact same results as immediate treatment.
JT
Posted 2/6/2013 10:17 PM (GMT 0)
I agree with everything John said.  If Johns Hopkins, Memorial Sloan Kettering and other cancer institutes around the world have AS programs for qualified patients, how wrong can it be.  They are not discouraging it.  These institutes have 10, 20, 30 years of historical data along with recent studies. 

I am following AS for about a year now.  I see my Oncologist (Urologist)  every 3 months for a PSA and DRE and a Biopsy every 12 months.  Dr. recently recommended a 3Tetra MRI to get more information on what I have.  If my cancer is more aggressive we should see some sort of flag.  I realize I will need treatment at some point, maybe 3 months or 5-10 years. I am comfortable, not worried or scared with PC and will treat it at the first slight indication of progression.

When the time comes I am leaning toward Brachytherapy. 

Posted 2/7/2013 11:40 AM (GMT 0)
I think that AS is not as popular as it should be because it does not make intuitive sense to many. The biopsy even with color doppler testing and MRI is a far from certain method by which to evaluate PCa. The cancer is the reality. The biopsy is an imperfect sample. There is a 30% chance your cancer is not a 3+3 that the biopsy says but a 3+4 or even a 4+4. Its a crapshoot - if the biopsy needle goes slightly left it picks up the "kitten" 3+3 cancer, the surgeon goes slightly to the right it picks up the "tiger" 4+4 cancer. Additionally probably around 25% of cancers are found primarily on the anterior of the prostate resulting in a false impression of very little cancer when biopsies are done transrectally. And as we all know, there are people here biopsied many times over with clear results only to find out that they actually have a significant volume of moderate or advanced cancer that for some reason was not picked up by the first three or four or five biopsies. Presumably it is equally possible to have small amounts of 3+3 cancer picked up several times over several years during AS when the tiger sitting unsampled within the prostate.

I agree with the logic that Toyoung and John T raise and AS is a very sensible treatment option and the stats certainly back it up. I like statistics and probability which is why this thread is so interesting. Over time I have come to see that AS is a very good option - no side effects and the risks are relatively low and most importantly are managed through regular screening.

So then I try to put myself with what I know now into the past and think about what I would have recommended my husband to do given that his biopsy came back with only 10% of one core of 3+3 cancer. He had a choice of AS, surgery or brachy. At the time he was 100% set on surgery and I completely agreed. Now I would probably equally push for brachy. But I still wouldn't suggest AS - its the intuitive sense thing versus the head thing and its hard to overcome. In any case in my husbands case active treatment was completely the right option. Surgery showed that the cancer was 3+4 and although it was confined to the prostate it was close to the margins. And because it was mostly in the anterior of the prostate, it is likely that the second or third transrectal biopsies with AS would have shown nothing at all lulling us into a (false) sense of confidence that the cancer was insignificant.

Regards,
An
Posted 2/7/2013 1:44 PM (GMT 0)
I was not a candidate for AS but a friend of mine who was diagnosed about the same time did choose AS. I can't see my self doing AS even if I had that choice.
Posted 2/7/2013 5:34 PM (GMT 0)
An,
I certainly agree that it is an intuitive call vs a probabilistic call. A lot has to do with how we view cancer and the many years of "early detection, get it out early" mantra. This is true of many cancers, but as we have found out PC is a different animal and a spectrum of many diseases.
Again I must stress that AS is a careful monitoring which includes follow up biopsies. It would be an extremely rare case in which an AS monitoring protocol did not pick up progression or a higher grade missed in the original biopsy in time for a successful treatment.
Posted 2/7/2013 6:08 PM (GMT 0)
It's a personality issue but it's also has some logic to it.

I was 40. I knew i'd need treatment sooner or later.

I wanted to tackle the possible SEs in the best shape and as early as possible to enhance my chances of overcoming them as younger people do better with these. In my case, I didn't see the logic of delaying the inevitable and potentially risking progression thorough my fault or that of my docs. The thought of a perfectly managed AS plan also was something I did not want to deal with. Repeated vistis, biopsies, DREs, blood tests and more. No, I wanted to deal with it once and hope to be able to move on. This is also another reason I preferred surgery over treatments that require 30-40 sessions. This all worked perfectly for me (up to now).
Posted 2/7/2013 6:10 PM (GMT 0)
 It would be an extremely rare case in which an AS monitoring protocol did not pick up progression or a higher grade missed in the original biopsy in time for a successful treatment.

maybe in a top oncology program.  my short time here tells me to avoid blanket statements when it come to PC vigilance and treatment.

ed

 

Posted 2/7/2013 10:52 PM (GMT 0)
I agree that AS isn't for everyone but I've become much more calm and accepting of my condition since I've started this course of action. (Perhaps the opposite reaction to what many would have.) I realize the risks - perhaps my cancer will much worse than the biopsy shows. However, I tend to fall in the camp that believes that prostate cancer is either very aggressive or slow-growing. I believe if it is aggressive it will return regardless of whether I seek treatment or not - I may get an extra year or so but it will return. And if it is slow-growing, then I've subjected myself to a potential significant change in lifestyle when I feel perfectly healthy.

That all being said, I don't want to appear smug about my choice as I have some tests coming up and have fears that I may have crossed past my threshold of AS. C'est la vie.
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