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Posted 8/12/2010 12:56 AM (GMT 0)
My 52yo husband has Gleason 3+3 cancer, 1 core out of 12, 10% (see signature for more details).

So recently I put all his numbers into the Sloan-Kettering pre-treatment nonogram and the one number that I hadn't noticed before and that hit me was the probability of indolent cancer.

When I looked at my husband's numbers and after reading extensively and getting feedback here I thought that the likelihood was that he has small indolent cancer. I imagined that the probability of having indolent cancer was high, perhaps in the 70 - 80% range. Very surprising to see that the probability of indolent cancer was only 31%.

Am I the only person to be surprised by this? Do you think people over-estimate their likelihood of having indolent cancer? Especially younger patients with "insignificant" disease who make Active survellence decisions? I am not making a judgement on anyone, just highlighting that the risk of non-indolent cancer is significant even in early PC.

An

 

Posted 8/12/2010 1:47 AM (GMT 0)
I must agree with you AN38...After you have been diagnosed with PC, Active Surveillance becomes risky business..There is nothing to gain by waiting, especially if you are under 65 years of age..

If you have had a NEGATIVE biopsy, but a suspicious PSA level or rise, that's when AC has a role..

At my treatment center, TUCC in Denver, 50% of the prostate biopsies they perform come back negative for cancer, 50% positive....They feel very pleased with their low percentage of "unnecessary" biopsies...My U-doc seems to think that on average, 75% of all prostate tissue samples sent to pathology labs comes back negative, the result of overzealous use of biopsies in routine cancer screening...Breast cancer biopsies are much worse than that, but they don't have the early warning PSA test men benefit from...
Posted 8/12/2010 1:57 AM (GMT 0)
An,
It is difficult to determine indolant cancer or progressive cancer with just one reading of Gleason and psa. It is how the tumor reacts over time and this is usually reflected by the psa. As the tumor grows it will generate more psa. It looks like your husband's psa is not increasing or increasing at a very high doubling time. Also if it was found in the transition zone it has a very low probability of escaping while you monitor it.
I don't know what the defination of indolant is. It was explained to me that indolant pc was insignificant cancer clusters that have not yet or may never form into a tumor. Low risk PC is a slowing tumor that has a very small probability of harming you during your lifetime.
JT
Posted 8/12/2010 3:07 AM (GMT 0)
Hi John,

Their definition of an indolent cancer is "Indolent cancer is a type of cancer that grows slowly ... and treatment may be unnecessary", i.e. similar to your definition of a low risk cancer.

My concern is not specifically for my husband it is just to understand the risks that people with what has been diagnosed as early or insignificant PC face. I think these risks are understated, 69% chance of it not being low risk is significant for a younger patient.

Anshula
Posted 8/12/2010 4:18 AM (GMT 0)
From everything I have read on truely low risk cancer is that within 7 years only 30% progress to a higher Gleason grade or psa doubling time decreses to below 3 years whcih is the trigger point for treatment. Most progressions are identified within the 1st three years. The data is fairly consistant in this regard. You can look up studies by Klotz who has done most of the research on Active Survelience. Both the Hopkins and the UCSF programs on AS are pretty successful although the data collected thus far is not long term. Long term data is lacking, but there is a lot of 5 to 7 year data.
JT
Posted 8/12/2010 6:14 AM (GMT 0)
An,
The problem with a prostate cancer diagnosis is that we have no test that can tell if a cancer is actually indolent or aggressive. All we really have is a lot of retrospective studies that tell us that certain prostate cancers are likely indolent and can be monitored. We have some recent studies underway that need time to mature, but even still no one using any test we have can tell which case of prostate cancer will make an aggressive turn. Your husband would not qualify for active surveillance at Johns Hopkins because of his age. JHU suggests in their protocol for active surveillance that any patient with low risk disease has less than 10 years life expectancy can use the protocol. They also define that any patient with very low risk and less that 20 years life expectancy will be offered that option. At 52 your husband can easily live past 72 unless he has hereditary history, or ailment that would limit that probability.

But maybe another way of looking at it is ~ does he need treatment now? Given the information in your signature, delayed therapy is not necessarily a bad decision. If active surveillance is something you both would like to consider, I suggest you study it well and don't miss any opportunities. I can cite cases where these numbers will do well for years typically about 5-7 years before the cancer in follow up biopsy or PSA changes has changed enough to warrant therapy. And while it is rare, I can also cite limited cases where it did not work out as hoped and a first line local therapy alone was not enough and progression required a systemic therapy.

Tough scale to balance from all data I have read...

Tony
Posted 8/12/2010 3:25 PM (GMT 0)
The article linked below is one of the best things I have read concerning "active survailance." The author is well-respected. Of course, that does not mean he is right. But it is worth reading.

http://jco.ascopubs.org/cgi/content/full/27/30/4935
Posted 8/12/2010 5:51 PM (GMT 0)
Excellent article, thanks for posting it.
JT
Posted 8/12/2010 6:02 PM (GMT 0)
http://jco.ascopubs.org/cgi/content/full/27/30/4935

 Not stealing your link Med...just tryin to help others get it quicker.

Should be link clickable now. Interesting read between articles like this and Scholz new book, some new discussions will be coming down the line more and more.

Posted 8/12/2010 6:47 PM (GMT 0)
The Klotz article cited in footnote 6 of this article is also worth reading. It gets into more detail regarding the criteria for AS.
Posted 8/12/2010 7:01 PM (GMT 0)

Medved, let me add my thanks for posting this article.  Dr. Zietman adds to a growing chorus of noted physicians (e.g. Dr. Scardino) who are now proposing AS as a reasonable approach to early stage PCa.  Ironically as this chorus grows we still have long lists of men (reference the August list of surgeries on HW) who might benefit from the AS approach but who continue to line up for the surgeons...

Tudpock (Jim)

Posted 8/12/2010 9:20 PM (GMT 0)
Interesting article thanks for posting it.

I was treated by Kaiser. For cost savings reasons, I would think a big HMO would be all over AS; however, when I was treated the URO pushed nukeing it and gave a secondary choice of cutting it out. When I brought up AS (I called it watchful waiting and he corrected me), he did not think that AS was viable. Maybe a lot has changed in the last year and a half.

I'll be interested in seeing if Kaiser jumps on AS. I am guessing it could become a standard for low risk PCA under the new health care law.
Posted 8/12/2010 9:53 PM (GMT 0)
Unless a doctor can have a patient sign a release from any liability ( which is a joke of sorts ). they probably cannot suppoirt AS from a liability point of view.

So many people todfay will sue at the slightest pretext.

You said it was slow growing. You said I could wait. Now I have mets, or I have a positive margin. I think you were involved in malpractice. I need a million bucks.
Posted 8/12/2010 9:57 PM (GMT 0)
How about the opposite lawsuit:

"I had a cancer that highly-regarded experts agree was very likely to be indolent, with a 95% chance it would never affect me in any way. You failed to tell me about the AS option and instead told me the only viable option is surgery. Now I have ED and am incontinent (and suffer from depression, marital difficulties, etc.)."
Posted 8/12/2010 10:20 PM (GMT 0)
However, when biopsying the complete organ, they found a pocket of G-7 tumor that had not be located by the original biopsy and in doing so probably saved my life...

You can go around and around with this and dress it up any way you want to...
Posted 8/12/2010 10:37 PM (GMT 0)
I think goodlife has the actual Ins. Co. point of view.

I was kept for three days in hospital after DaVinci (had some serious issues with nausea and balance). There was not a hint of an issue. If I had fallen down a flight of stairs going home the day after, that would be expensive.

I was amazed at the ease and speed of getting IGRT approved so quickly after my DaVinci. Better pay now than support years of treatment and eventual disability.

You can easily get sicker and have real treatment expense that they can't fight easily, but prove the Dr. didn't explain it - I didn't think he did a great job of it, but then listening at home to the recording I made, it was all there, clear, plain, and simple. I was just in shock. And having recorded it, I would have no excuse.

Then try to prove that the depression, etc., is the fault of the surgery - with a jury, you have to prove it was that, not the economy, losing your retirement savings in the stock market debacle, home foreclosure, job, or any of the other things going on at the same time. If you got a jury of PCa survivors, you might have a chance, but a good defense lawyer will get as many as possible excluded. All the rest believe in the "its the best cancer you can get" stupidity, so would write you off as a money-grubber.

Surgery may actually be defensive medicine**, just as the CT scans and bone scans that we all question.

** meaning in my case not the doctor, but the ins. co,. would rather pay the surgery than take the risk of long term care. I think if there was a good, inexpensive treatment, the Ins. companies would require you to sign up for it at 50.

Post Edited (142) : 8/13/2010 9:09:46 PM (GMT-6)

Posted 8/12/2010 11:26 PM (GMT 0)
...hence the need for tort reform...

Tudpock (Jim)

Posted 8/12/2010 11:41 PM (GMT 0)
Once again, some more of this anti-doctor stuff being spewed. My doctor's never hinted at or guaranteed anything in any of my treatments, operations or even radiation. And yes, you sign a lot of liability away just being treated. Even with some of my lingering side effects and complications, I don't feel it was due to bad "doctoring". Most of it has to do with the exactnetss of my own body and the condition at the time stuff was done to it.

Of course there are legitimate cases of malpractice and wrongful death associated with any medical treatment/practices, and its sad when it f* up someone for life, or if they die.

But all of us knew, or should haven known the natural risks before undergoing any primary or secondary treatments. If you didnt, then shame on you for not asking questions or reading what you signed. I don't believe anyone here was forced into a treatment against their will.

For every bad apple, there's a thousand good apples.

It's a shame that so much of a doctor's gross profit has to go for insurance levels that he/she shouldn't have to have, just to protect themselves from the ambulance chasing class of litigators that love to lure in a disgruntled patient. Again, not takling about the legitmate cases.

David in SC
Posted 8/14/2010 3:04 AM (GMT 0)
David - hope you understood I'm comfortable with my GP & uro/surgeon (like I said, the recordings proved he was clear and up-front, just me that was in shock, and had nobody to sit through it with me) - it is just making sense of how and how much the insurance decides to pay that seems suspicious. Simple $100 things get refused and take weeks to work out, but IGRT breezed through the system even when the doc thought we would have to fight for it.

Or maybe my numbers were so bad there was no argument?
Go figure.

Post Edited (142) : 8/13/2010 9:13:11 PM (GMT-6)

Posted 8/14/2010 4:22 AM (GMT 0)
I remember my SRT being instantly approved as if I were buying a soda from a convenience store, lol.
Posted 8/14/2010 9:33 AM (GMT 0)
medved, zufus,

Thank you for the article and the reference to footnote 6. It is interesting because other respected institutions like John Hopins do not recommend watchful waiting for younger patients. But its good to rfead another opinion.

I know Jim that you do not approve of many of the August surgery patients being operated on partly because you have made different choices. But their choices may not be wrong for them.

Look at what the  article in footnote 6 says about watchful waiting (copied below). Having biopsies at this rate would mean 9 biopsies till the age of 80 and over 60 DRE and PSA tests. Given the Sloan Kettering rates for indolent cancer are 31% in his case then the chances are that he would never get to 80 without treatment. And if he does get biochemical progression at the age of say 60 then he older and able to tolerate the surgery less easily than at 52. Maybe some people would prefer this approach but it's quite reasonable not to like this approach even given the incontinance and potency issues associated with surgery.


I know my husband. If he had to religiously follow this follow up schedule the stress and the burden of it will have him having his prostate out in a year or two even if his psa hovered arount 2-4. Also weighing on him is fear, his uncle and his grandfather who died of the disease.

There are no black and white clear answers in this unfortunate game of PC. And there's no winning. If his prostate comes out with a small amount of cancer, those people who don't like surgery would say he was too quick and his surgery was not needed. If it turns out that the margins of his prostate were positive, then people who don't like surgery would say that he would have been better without it and that he should have stuck to seeds or radiation. But if my husband has no cancer after this surgery, if he regains his continance and if we can make love even with needles or with Viagraor even not at all, I think it will be a win for us.

An

Eligibility
PSA 10
Gleason score 6
T1c to T2a

For men with > 15-year life expectancy, < 3 cores involved, < 50% of any one core

Follow-up schedule
PSA, DRE every 3 months x 2 years, then every 6 months assuming PSA is stable
10-12 core biopsies at 1 year, and then every 3 years until age 80 years
Optional: TRUS on alternate visits

Posted 8/14/2010 3:09 PM (GMT 0)
An38,

Well stated; you have obviously thought longer and hard concerning the path forward.

 

Posted 8/14/2010 3:59 PM (GMT 0)
I agree An38 -- you are obviously a very thoughtful person -- combining medical research with knowing yourself and your husband. I would be VERY suspicious of anyone -- whether a doctor or a poster on this board -- who implies that there's only one "correct approach" to your husband's situation. Best wishes, Medved
Posted 8/20/2010 1:38 AM (GMT 0)

An - Almost like looking in a mirror, but a written version.  My husband, after a year of rising psa to last reading in the spring of 5.0 had a 6 core biopsy 4/1.  1 core 5 % adenocarcinoma, Gleason sum 6, second core highly suspicious for minute adenocarc. Second opinion at JH confirmed.  Prostate MRI confirmed a 15mm nodule. Researched like mad, put all the options, studies in front of him.  Gray, gray, gray everywhere.  Changed his mind around 3 times as to treatment as each med. study swung widely one way, next one the other.  Bottomline,  he"wanted it out".  I favored active surveillance but  had to be HIS decison at 59yrs. old - terrified my influence would cause a decison both would regret.  3 surgical offices contacted (including the 2 "heavyweights" for rad. prosty in the country) and had the surgery 7/6 in Boston.  Nerves spared, continent almost 100%immediately still working he other issue out but hopeful 6 wks later.:-) Nodes clear, clear margins in the gland etc..  Waiting on first psa reading post surg this week...

You still have time to think it over if either one of you is second guessing.  We nearly walked out morning of surgery as he lay on the gurney.  Overall recovery has been very slow.  Low energy levels, some very minor stress incontinences, rectal pain (referred nerves, apparently) nearly constant.  It's a RADICAL surgery.  Wishing you great good luck.  Try not to look back once the decision is made.        

Posted 8/20/2010 4:57 PM (GMT 0)
Great article medved. I enjoyed reading it very much! Thanks for posting...

medved said...
The article linked below is one of the best things I have read concerning "active survailance." The author is well-respected. Of course, that does not mean he is right. But it is worth reading.

http://jco.ascopubs.org/cgi/content/full/27/30/4935

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