Treatment decision.... AS

MCinNC

(My case info is: Age 56. 7/22/10 biopsy results confirmed on 8/17/10 showing 1 of 12 positive, with 5-10% of core tissue involved. Gleason of 3+3=6, PSA before biopsy 2.3. Nothing on DRE. Family history (father) with PC. Stage: T1c. General health good.)

I've had around 60 days of deliberations and research since being diagnosed, and have worked daily on trying to make a prudent decision as to what to do. I've talked to my local uro and GP, I've been to two university medical centers and gone through a multi-disciplinary PC evaluation at both (involving medical oncologists, radiation oncologists, surgeons, etc), met with members of a local PC support group, read as much literature and research as I could find applicable to cases like mine, spent many many hours on the internet discussion boards, etc, etc, etc.

This week I've determined that my treatment decision will be active surveillance. I will have a regimen of scheduled PSA tests and DREs and biopsies, and if there is reliable evidence that my PC is progressing, I will likely seek treatment without delay.

This has been a difficult process to go through and a difficult decision to make. I have become weary of being labeled a "good candidate" for virtually every PC treatment anyone has ever thought of. I have been surprised, and disappointed, that while the medical community provided plenty of general info about treatment procedures, they were very little help in deciding which of the options was best for me in my specific situation. Some specialists were admittedly biased in favor of their specialty. Some that weren't biased simply said all the treatments I was considering were valid options.

So, the patient who knew virtually nothing about PC a couple of months ago is in a sense left on his own to make a BIG decision that he will live with every day of the rest of his life. Someone with no medical training, and no knowledge of cancer treatment or medical procedures, someone who is obviously dealing with an abnormal amount of stress or duress due to the diagnosis - they make the decision and then let the drs know?? Is that really the best way to do this??

Anyway, this aggravated me more and more as time passed. But, if the drs were not going to be more helpful, then I accepted the responsibility to do the best I could to determine the "facts", evaluate my own priorities, and make a decision. My dilemma was an early stage, "low risk" diagnosis, but the treatment options would likely substantially and negatively affect my lifestyle and quality of life. Finding reliable data to determine how various treatment options were likely to affect me, and how the effects of one option compared with the next - I found to be remarkably difficult. And then all the personal judgment calls: should you act immediately for the best chance of "cure" and resign yourself to a real likelihood of living with unwanted side effects forever? What is best for you? What is best for your family?

Then, earlier this week, something completely unexpected happened. I ran into a dr. that was quite remarkable. He is a surgeon with 600 robotic RPs under his belt who methodically articulated a compelling case for AS given the specifics of my case. He spoke with great experience and expertise, and with a refreshing clarity and directness to the specific questions that concerned me. (In addition, the multi-disciplined group that he participates in later gave AS as their preferred treatment choice.)

I think the reality is that I would not have had the guts to choose AS at this point unless a credible expert had recommended it, and I had run across very few AS advocates in my travels. AS made logical sense to me for a number of reasons. There is some evidence that delay in treatment at this stage usually does not affect treatment outcomes. A delay in treatment allows additional data to be collected on "new" procedures that are without that data today. A delay in treatment prolongs the time one lives without side effects.

I think the reality also is that this dr's credibility is so high that I would have been persuaded by almost any other treatment recommendation he had made too. If he had said I needed surgery next week, I think I'd be there. So it is hard understate the importance of finding some medical expert in this process that really speaks to you. For me though, it was purely trial and error.

The AS theory that I'l be working on is termed "expectant management with curative intent." The theory is to make sure you need treatment before you have it, and therefore enjoy the current quality of life as long as possible, while monitoring the status of the PC to a degree that the possibility of a cure is not lost. I'll be working on the details of this for a while with my drs. It certainly helps to work with someone you really trust!

(I'd love to hear from those of you who have suggestions as to activity and diet ideas that would make sense while on AS.)

I'm very pleased to have reached this point in my journey, and I'm prepared to take whatever comes next. Many thanks to all the posters here on CSN who contribute their thoughts and experiences!

Mac

Kongo

Good Choice
Mac

I believe you have made an excellent choice for your situation. You have done a great deal of research and have talked to specialists who seem to have given you helpful advice along the way. Most importantly, I think, is the fact that you are going into this with your eyes wide open and have the knowledge and insight to make follow-on choices should your condition change. There are several studies that indicate that you can pursue a disciplined AS protocol without appreciable risk.

Many men with prostate cancer, me included, have chosen to pursue a diet that eliminates dairy and greatly reduces red meat, processed sugars, and foods in general that are organic rather than processed. There have been several posts recently about various diets and supplements. My personal opinion on supplements is that less is greater than more mainly because the manufacturing process of many supplements makes the desired chemicals difficult to absorb or have been shown to have fewer efficacies than the chemicals in their natural form from a balanced diet. But I think opinions are all over the map on that.

To me, the single biggest factor in overall diet is the elimination of dairy and red meat that comes from beef that is processed with all the growth hormones so common in the modern cattle industry in the United States today. These dairy and beef products contain many chemicals which have been linked to increased cancer rates but the biggest one is the Insulin Growth Factor I (IGF-I), which is much like giving candy to cancer.

A compelling statistic is the very low rates of prostate cancer in rural China and other Eastern nations where dairy and red meat are not a part of the diet. PCa occurs at a rate of about 1 in 100,000 there versus the 1 in 6 rate evident in Western Nations. The biggest difference is the diet is dairy products and the use of soy as a mainstay substitute for animal protein.

I would encourage you to read Professor Jane Plant’s books on breast and prostate cancer (you can find her on Amazon) to gain a more technical understanding of how the chemistry of milk and red meat can be significant causes of cancer and its spread. In my own case, my PSA dropped from 4.3 to 2.8 in about six weeks after I eliminated dairy.

Best of luck to you as you go forward with the AS protocol and please keep us updated on your progress and discoveries

hopeful and optimistic

AS
Kind of interesting, that I also spoke with a surgeon, who I respected greatly, who strongly recommended AS to me. That was my deciding factor. As I continue on AS I am more and more comfortable.

It is very important to have a positive attitude to continue with AS, otherwise it is best to seek another treatment. Every day I wake up and think of what I can do that is positive and I avoid stressful situations....I try to enjoy life.

You will find as you speak with other men, that many overtreat, and additionally some docs, especially ones in various disciplines......... will say and/or think that you are nuts...be strong and realize that this is a great treatment option, and that they really do not know what they are talking about, or are into greed.

I wonder if you can specify the protocol that you will be doing in your active surveillance treatment.

I agree with Kongo, that as far as supplements, less is better...since I have been investigating there have been some supplements that they told us to take...and now shown to have negative qualities. I personally take a small dose calcium, a 1000 vitamin d3, and a woman's multi vitamin.

I eat a heart healthy diet...heart healthly is prostate healthy..I also eat a lot of tomatoes and tomato sauce( no salt added)....we are more like to die from heart disease than from prostate cancer, and do regular exercise.

Welcome to the Active Surveilance club...I believe that you and I are the only ones on this forum who post who do Active Surveillance. I am doing this treatment for one and a half years.

CharlieG

hopeful and optimistic said:

AS
Kind of interesting, that I also spoke with a surgeon, who I respected greatly, who strongly recommended AS to me. That was my deciding factor. As I continue on AS I am more and more comfortable.

It is very important to have a positive attitude to continue with AS, otherwise it is best to seek another treatment. Every day I wake up and think of what I can do that is positive and I avoid stressful situations....I try to enjoy life.

You will find as you speak with other men, that many overtreat, and additionally some docs, especially ones in various disciplines......... will say and/or think that you are nuts...be strong and realize that this is a great treatment option, and that they really do not know what they are talking about, or are into greed.

I wonder if you can specify the protocol that you will be doing in your active surveillance treatment.

I agree with Kongo, that as far as supplements, less is better...since I have been investigating there have been some supplements that they told us to take...and now shown to have negative qualities. I personally take a small dose calcium, a 1000 vitamin d3, and a woman's multi vitamin.

I eat a heart healthy diet...heart healthly is prostate healthy..I also eat a lot of tomatoes and tomato sauce( no salt added)....we are more like to die from heart disease than from prostate cancer, and do regular exercise.

Welcome to the Active Surveilance club...I believe that you and I are the only ones on this forum who post who do Active Surveillance. I am doing this treatment for one and a half years.

AS
I did AS for about a year and a half then opted for surgery this fall due to some more conclusive findings, my concern over my body recovering any better in 5 or 7 or 10 or 15 years, if treatment was to be then warranted and to top it off, "healthcare reform" concerns in this country.

My stress is now way down, knowiing that they got it all, finding out that nothing was outside the capsule and no more biopsies! Now I am recovering nicely in my 52 yo body and looking forward to not having to worry about this health issue much any more. On to heart health, I reckon!

Best wishes to you and stay healthy!

MCinNC

CharlieG said:

AS
I did AS for about a year and a half then opted for surgery this fall due to some more conclusive findings, my concern over my body recovering any better in 5 or 7 or 10 or 15 years, if treatment was to be then warranted and to top it off, "healthcare reform" concerns in this country.

My stress is now way down, knowiing that they got it all, finding out that nothing was outside the capsule and no more biopsies! Now I am recovering nicely in my 52 yo body and looking forward to not having to worry about this health issue much any more. On to heart health, I reckon!

Best wishes to you and stay healthy!

Charlie, I could easily see
Charlie, I could easily see my future treatment course go the same as yours. At my age, it is likely, although not certain, that I will need treatment at some point in the future. If I have reason to believe that my PC is not fairly stable, I will go ahead with treatment. If you went from 0 cores positive in 2009 to 3 positive in 2010, that would be significant to me as well, and would cause me to re-think things.

At this point, if needed I would be comfortable proceeding with a RRP now that I have located a dr. that I am comfortable with. Also, I am still interested in CyberKnife and would welcome another 5 years of data on prostate outcomes if my treatment is delayed that long.

Glad things worked out well for you!

Mac

MCinNC

hopeful and optimistic said:

AS
Kind of interesting, that I also spoke with a surgeon, who I respected greatly, who strongly recommended AS to me. That was my deciding factor. As I continue on AS I am more and more comfortable.

It is very important to have a positive attitude to continue with AS, otherwise it is best to seek another treatment. Every day I wake up and think of what I can do that is positive and I avoid stressful situations....I try to enjoy life.

You will find as you speak with other men, that many overtreat, and additionally some docs, especially ones in various disciplines......... will say and/or think that you are nuts...be strong and realize that this is a great treatment option, and that they really do not know what they are talking about, or are into greed.

I wonder if you can specify the protocol that you will be doing in your active surveillance treatment.

I agree with Kongo, that as far as supplements, less is better...since I have been investigating there have been some supplements that they told us to take...and now shown to have negative qualities. I personally take a small dose calcium, a 1000 vitamin d3, and a woman's multi vitamin.

I eat a heart healthy diet...heart healthly is prostate healthy..I also eat a lot of tomatoes and tomato sauce( no salt added)....we are more like to die from heart disease than from prostate cancer, and do regular exercise.

Welcome to the Active Surveilance club...I believe that you and I are the only ones on this forum who post who do Active Surveillance. I am doing this treatment for one and a half years.

Hopeful and Opt...
Ira, just my opinion, but I think that your choice of AS is even more obvious or compelling than mine. I'm 10+ years younger and I think that is often seen as a negative for AS, and you had that great June, 2010 biopsy with no positive cores! Wow!

Its also interesting in that it sounds like your diagnosis was not the traditional T1c - there wasn't a high or rising PSA, there wasn't anything on the DRE that related to PC, etc.

Mine was similar with nothing on DRE, PSAs between 1.8 and 2.8 over several years, but the most recent being 2.3 - so not rising, and no other symptoms. My uro simply said that since my father had PC he'd recommend doing the biopsy. Some of the drs that evaluated my case felt that my T1c was somewhat weaker than usual, but again, nothing close to your June biopsy.

I haven't determined all the details of my AS protocol yet, but I expect it will include PSAs every 3 or 4 months, another biopsy within 12 months, and DREs scattered along the way. I'm working on what the diet will look like, but my surgeon agreed with you that a heart healthy diet is prostate healthy. My wife is a vegetarian (plus fish) eater so I think that will work itself out. As to the supplements, do you remember what the men's multi-vitamin has that the women's doesn't?

Hope your numbers continue to look great.

Mac

jminnj

MCinNC said:

Hopeful and Opt...
Ira, just my opinion, but I think that your choice of AS is even more obvious or compelling than mine. I'm 10+ years younger and I think that is often seen as a negative for AS, and you had that great June, 2010 biopsy with no positive cores! Wow!

Its also interesting in that it sounds like your diagnosis was not the traditional T1c - there wasn't a high or rising PSA, there wasn't anything on the DRE that related to PC, etc.

Mine was similar with nothing on DRE, PSAs between 1.8 and 2.8 over several years, but the most recent being 2.3 - so not rising, and no other symptoms. My uro simply said that since my father had PC he'd recommend doing the biopsy. Some of the drs that evaluated my case felt that my T1c was somewhat weaker than usual, but again, nothing close to your June biopsy.

I haven't determined all the details of my AS protocol yet, but I expect it will include PSAs every 3 or 4 months, another biopsy within 12 months, and DREs scattered along the way. I'm working on what the diet will look like, but my surgeon agreed with you that a heart healthy diet is prostate healthy. My wife is a vegetarian (plus fish) eater so I think that will work itself out. As to the supplements, do you remember what the men's multi-vitamin has that the women's doesn't?

Hope your numbers continue to look great.

Mac

Mac,
Good luck and God Bless
Mac,

Good luck and God Bless as you continue your journey. My numbers were somewhat similar and I opted for surgery. I just knew mentally I could not handle the tests, results, etc. I applaud you for your decision. My hopes and prayers are that your numbers continue to be low.
Keep us posted on your progress. Again good luck and God Bless,

Joe

hopeful and optimistic

MCinNC said:

Hopeful and Opt...
Ira, just my opinion, but I think that your choice of AS is even more obvious or compelling than mine. I'm 10+ years younger and I think that is often seen as a negative for AS, and you had that great June, 2010 biopsy with no positive cores! Wow!

Its also interesting in that it sounds like your diagnosis was not the traditional T1c - there wasn't a high or rising PSA, there wasn't anything on the DRE that related to PC, etc.

Mine was similar with nothing on DRE, PSAs between 1.8 and 2.8 over several years, but the most recent being 2.3 - so not rising, and no other symptoms. My uro simply said that since my father had PC he'd recommend doing the biopsy. Some of the drs that evaluated my case felt that my T1c was somewhat weaker than usual, but again, nothing close to your June biopsy.

I haven't determined all the details of my AS protocol yet, but I expect it will include PSAs every 3 or 4 months, another biopsy within 12 months, and DREs scattered along the way. I'm working on what the diet will look like, but my surgeon agreed with you that a heart healthy diet is prostate healthy. My wife is a vegetarian (plus fish) eater so I think that will work itself out. As to the supplements, do you remember what the men's multi-vitamin has that the women's doesn't?

Hope your numbers continue to look great.

Mac

I eat pretty much as your
I eat pretty much as your wife.....vegies and fish; they say that fatty fish povides omega 3, salmonfarmed and wild, mackerel, herring, sardines, farmed and wild lake trout, albacore tuna.

If you drink coffee or tea, only GREEN tea has beneficial value.

There is correlation between high dietary fat( red meat and corn oil) and incidence and mortality from CaP.

Men's multi vitamins: I don't remember what the ingredients are that are negative, but I am looking at a multivitimin label...I'm guessing, but..I notice that e and selium are included....a few years ago there was a "Select Study" of 35K men to measure effects of selium and vit E on preventing prostate cancer.....the study was tending to show the opposite and the study was ended.

There is a Dr. Moyad, out of Michigan who is a prostate cancer nutritionist who recommends woman multi vitamins over men's(that's why I have switched).....I heard this from him in a lecture that I attended.....he also published a book on nutrition; I think that it is available by contacting the Michigan Medical Center, Urology dept.

It appears that the AS protocol is different depending on expertise and resources available to the doctor; so it important to do research to find a doc who will do the best for you....once again, you will find different opinions; for example some refusing to obtain biopsies because of fear of cancer spreading, etc, so you have to do your due diligence.

CharlieG

MCinNC said:

Charlie, I could easily see
Charlie, I could easily see my future treatment course go the same as yours. At my age, it is likely, although not certain, that I will need treatment at some point in the future. If I have reason to believe that my PC is not fairly stable, I will go ahead with treatment. If you went from 0 cores positive in 2009 to 3 positive in 2010, that would be significant to me as well, and would cause me to re-think things.

At this point, if needed I would be comfortable proceeding with a RRP now that I have located a dr. that I am comfortable with. Also, I am still interested in CyberKnife and would welcome another 5 years of data on prostate outcomes if my treatment is delayed that long.

Glad things worked out well for you!

Mac

Working out
Working, not worked! Just now 5 weeks out of surgery (tomorrow at 11:00am) and still "taking it easy". Wife is getting dog tired of doing the heavy lifting (literally), however, perhaps I can mile it a little longer?

Anyway, recovery is going pretty good, I think. It's not linear and it is incremental. I am not one of the lucky boys how was dry after three days. Still dripping some (fristrating), however, I feel that I am getting more control. I think that speed of urinary control recovery after surgery is definitely an age related thing, IMHO.

I wish you all the best and comfort in your resolution.

BTW - I lived in NC for about 20 years.

randy_in_indy

Mac
I believe you are spot on with your decision. The hardest part is going to be mental for the near term...with each test and new reco that every tom **** and harry will attempt to give you. Kongo and everyone posting here on this thread is very well researched and read on this subject and you can take their thoughts and direction as pretty solid advice...at least I would after reading many, many posts by everyone here. I trust you will have regular test to stay totally on top of the situation so any quick change will be detected and then reanalyzed for new therapy direction.

God bless!

Randy