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Five years after IMRT

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

In 2005 I had a PSA level of 4.0. In 2006 I had the same and a biopsy was recommended. I had this done, 1 out of 12 samples showed cancer. I choose 8 weeks of IMRT theropy, nothing else. About 6 to 8 months after the original treatment, my PSA decreased to about .90 or maybe less. A year ago my PSA was 1.9 and on this past Monday, my PSA was 2.2. Both my family doctor and my previous Oncologist recomended and scheduled a bone scan for 9/22/2010. I also have had burning during urination since the treatment in 2006, and sex feels like fire. I have had a colonoscopy about two years ago and three polops were removed in my lower intestine as there was red blood in my stool. I was taken by surprise at this first diagnosis in 2006 and even more so now at age 61. Doctors to not say much until they have the facts. After reading many posts it is my 99.9% feeling that my cancer has returned, or is someplace else lurking. Is there anyone out there that has had any similar situation and can be honest with me of what I might expect shortly down this road? Am I correct to assume that my prostrate or some other form a cancer has developed since my IMRT treatment 5 years ago? Thank you for the truth, which only God knows anyway.

Trew
Posts: 892
Joined: Jan 2010

Sounds like maybe you might be getting a hormone shot soon. Just my guess. Rising PSA doesn't sound good but then not evrey one of our fears materizies. Take a deep breath and wait and see what the docs find.

I wish you well.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

Trew;
I agree with all of your comments and pray for the best. Thank you.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

G.L.M.

Welcome to the forum. There are many men here who have gone through similar situations as yourself and will provide you lots of advice and commentary.

I am sure your doctors told you that the theory behind radiation treatment is that ionizing radiation kills cancer cells by releasing free radicals within the cancerous cell that attack the DNA and prevent the cell from multiplying and spreading. As you probably recall from research you did at your initial diagnosis, prostate cancer is very slow growing and by the time it is detected through a PSA test and biopsy, there are millions and millions of cancer cells in the prostate. When you received IMRT treatment, the drop in PSA you experienced indicates that many, if not most, of the cancer cells in your prostate died off as a result of the radiation. Unfortunately, because there are so many cancer cells and all of them are in different stages of development, it is inevitable that some of the cells were not sufficiently damaged to trigger apoptosis (cell suicide) and these cells will start multiplying again.

Most radiation oncologists consider that three consecutive increases in PSA indicate a biochemical recurrence and from what you describe in your post that seems to be the case here. The big question, of course, is where is the cancer? Is it still within the prostate or has it spread to surrounding areas? The type of treatment and its efficacy of whatever course you and your doctors decide upon now depends on where the cancer is located.

I would encourage you to seek multiple second opinions from the most experienced specialists in your area on this. Your family doctor is probably not equipped to address this and his knowledge of the latest research and options is likely to be limited, dated, or both. There are several methods that can help determine where the cancer is. A test known as a ProstaScint Monoclonal Antibody Scan takes about five days to complete but can pinpoint where the cancer is. Color MRIs and some advanced CT technology are also available. I would have your medical team explain the purposes of these tests to you in detail and what can be accomplished with them. All are painless.

Treatment choices serve mainlky to delay the growth of this cancer. When it was first detected in you in had probably been growing for 10 or 15 years and had only just reached the level where it could be detected through the techniques we have today. After radiation, it most likely never completely went away, but enough of it was destroyed so that it remained basically undetectable until it grew enough to be noticed through increasing PSA testing.

Of course, since you still have a prostate, there may be other causes for the rise in PSA such as prostatitus which can cause PSA to rise and can still occur after radiation. Only advanced testing can determine exactly what is going on. The doctors should also be doing DREs and may want to consider another biopsy.

Hormone treatment has been shown to be effective in delaying (not curing) the growth of PCa. There are also other radiation options to kill the remaining cancer, particularly if the doctors can determine that it is still confined to the prostate.

Many advances continue to be made with IMRT. In 2006, the technology was not available to fully compensate for the movement of the prostate on a normal basis and the rectal toxicity you describe may well be correlated to radiation spillover to the wall of the colon as there is a very tiny separation from the prostate and the rectum. More modern techniques with IMRT today and other forms of radiation like SBRT now prevent much of the radiation damage to surrounding tissue. Late stage rectal toxicity occurs in about 3% of patients treated with IMRT and the treatment is pretty much what they did in your case.

There’s still a lot about your situation that you just don’t know yet. Other types of cancer would not cause the PSA to rise. But the PSA rise may not be associated with PCa although I would be surprised if there wasn’t at least some microscopic PCa remaining.

Please get yourself some expert consultations on your condition and keep us posted on your progress.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

Dear Kongo;
So far you have explained more to me that both my doctors in 5 years. Thank you. I just cannot figure out why this situation happened as my original cancer was ver small, and I had 48 treatments of IMRT. Some people said they gave me too much radiation to begin with. I did print out your kind reply and will study it very closely. You are a good man to spend so much time helping others. Have a great weekend as my wife and I are watching our second Grandson for the night. He is 3 months old.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

This is a follow up question if I may please. Both my family doctor and former Oncologist want me to have a bone scan ASAP as it is already sceduled for next wednesday, 9/22/10. Do you believe or have heard that this is the best, next step to take in order to determiine a "game plan? Thank you so much for your time.

mrspjd
Posts: 694
Joined: Apr 2010

GLM,
Not only a bone scan, but also a pelvic CT with contrast. Although no test currently can detect microscopic PCa cells, these two tests are important in helping your doctor determine if the PCa has metastasized. Also, an endorectal MRI w/Spectoscopy, preferably with Tesla 3 MRI equipment, may be appropriate and can indicate if the PCa is in the seminal vesicles and nodes. The Tesla 3 MRI is a newer version of the imaging with clearer, higher def images, & is limited in use, mostly found at a few of the larger well-known teaching hospitals in the country. Be your own advocate and insist on these tests after you have done your own research.
Best,
mrs pjd

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I second mrs pjd's comments. Frankly, I doubt the bone scan is going to show anything at all. Bone metastasis large enough to be seen in a bone scan occvur in the later stages of prostate cancer and from what you have described, you certainly don't seem to be there. Doctors continue to prescribe this test at inappropriate times to avoid lawsuits and to "rule out" certain conditions that seem rather obvious to not be in play given the description of your situation. In any event, it's not going to do any harm given the amount of radiation you have already received.

Keep in mind that if anything is detected in a bone scan, it is a strong indication that the prostate cancer is probably also in lymph nodes, seminal vesicules, and may have also moved to the liver.

I would expect that in addition to the bone scan that they would also do a full blood panel to look at liver functions.

As mrs pjd points out we generally do not have testing today that can detect microscopic PCa but there are tests that can give your medical teams clues and include the procedures she highlighted. And I suggest you ask them about the ProstaScint test in my earlier post.

You may also wish to talk to your doctors about a bone marrow aspiration test that may detect potential metastases in the bone much earlier than a bone scan.

I appreciate your kind words but if in five years your medical team couldn't make clear to you what was going on and give you a likely prognosis, I would think it is time that you consider recruiting another set of doctors. In my own case, I learned to be a much stronger advocate for myself as I learned more. In the begining, I went along with everything that was recommended, biopsies, bone scans, chest x-rays...all of which may not have been necessary. Hindsight is always 20-20 in these cases and I know telling your doctors "no way!" and walking is difficult for us to do. But think about it and make sure they answer all your questions.

Enjoy playing with the new baby grandson. Those are precious times.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

I was the one who suggested the bone scan before any treatment. My Oncologist told me my Pca was so minute, that we never even do them in cases like mine. I insisted and got the test anyway. I was also reading about a mans PSA lever can fluctuate during certain times by quiite abit. My blood work was sent to me but not my PSA level on the same report. This causes me concern. I feel like asking for another PSA level next week and wait for the results in the office to see. I always feel that most doctors seem to rush patients into any test and for different reasons.
I will most likely go ahead with this bone scan as my doctor already told me that most likely, nothing will show up to do with Ca. Originally my Pca was quite minute so after radiation , 48 cessions, I was told my cancer was gone as it was caught early. I was never told that someday my cancer might return. I went to Texas Oncology Center on Preston Rd. and George Bush Tollway in Plano, TX. It is supposed to be the best in the state, however everyone claims to be the best, do they not? :-). Thak you again for your kind thoughts, and yes, our new grandson only work up once last night, so it was a double blessing. God bless you all for taking your time in answering my questions.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

G.L.M.

The bone scan certainly can't hurt but it's just one of several tests you and your medical team ought to consider to assess your existing condition so that you can intelligently weigh future options.

As you said, many things can cause PSA to vary and PSA increases is not specific for PCa as long as you have a prostate. Considering the amount of radiation the prostate receives during treatments such as IMRT, BPH is probably a remote possibility but many patients develop prostatitus after radiation that can cause PSA to increase. Also, as I am sure you read in your research, PSA is given off with ejaculate so you will want to avoid sex for a few days prior to having your blood drawn to get an unbiased level. In my own case I found that eliminating dairy lowered my PSA significantly (it went from 4.3 to 2.8 in about 8 weeks). With radiation, almost 50% of patients experience what is known as a "PSA bounce" but it usually occurs at the 1 to 2 year point so I don't think what you are seeing correlates to a harmless bounce effect, but I would ask the doctors about it anyway.

One of the great misrepresentations about prostate cancer, in my opinion, is that doctors lead willing patients to believe that there is a "cure" if it is caught early enough. In a true sense of the word, cure means that you will never, ever have a recurrence and that "they got it all." The more I learn about prostate cancer (and I am just a novice...six months ago I barely knew where the prostate was even located) the more I suspect that there is no such thing as a true cure. Prostate cancer is a inexorable metatastic disease that follows a fairly predictable pattern of growth and cell multiplication. Usually it takes more than 50 years for prostate cancer to go from a single rogue cell to enough mass that it is a killer. When it grows to a detectable level, taking early treatment basically resets the clock back quite a bit but it is still there and it will still grow. In a sense, we are "cured" of prostate cancer when we get hit by a bus or a heart attack kills us. Of course there are some variants of this cancer that are much more virulent and kill fairly quickly, within a few years of detection, and treatment methods today have little effect on the outcome outside of statistically extending your likely lifetime by a few months. Fortunately for most of us, this only happens to a very, very small minority of patients with prostate cancer.

G.M.T., one of the predictors of how your disease is progressing is the velocity of how quickly the PSA is increasing and the PSA doubling time. If you go back and look at all the PSA readings since your IMRT treatment, you will be able to calculate this yourself and you should have it with you when you discuss your case with your doctors. There are some nomograms on the web that enable you to plug in the PSA reading and the date and it calculates these numbers for you automaticaly. One site I have used can be found at http://www.doubling-time.com/compute-PSA-doubling-time.php. For men who have had treatment, a PSA doubling time greater than 1 year is generally considered good. Obviously, the more data points you have the more accurate the curve fitting equation used to calculate the PSADT and velocity are. Just making a SWAG at the numbers posted, I suspect you have a low PSA velocity.

One of the dangers we patients face when looking at a potential recurrence is that additional treatments increase the liklihood of negative side effects. In your own case you have already experienced some late stage rectal toxcicity. Additional treatment increases the risk of more of the same along with potential incontinence issues and erectile dysfuction. There is always a trade off to consider, so being well informed and strong advocate for yourself is the only way we can navigate these muddy waters.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

For you participating in this for about six months, you sure seem like an encyclopedia of knowlege. Something you said about dairy products really hit home very hard when I read your latest reply to me. I saw my family doctor on Monday,9/13/2010. My PB was good, Bad cholesterol was under normal level, my bad cholesterol was 150 and he would like to see it under 100. My triglicerides were 4 points over nornal which is good. I am 61 years young, 5 ft. 9 in and weighed 174 on 9/13/2010. I told my doctor that my weight was most likely higher which it was, and my cholestorol would most likely be high, which it was. I told my doctor this as I had been eating a quart of ice cream everynight all summer when I knew it was wrong as my son works for Whole Foods CO. I still smoke which also makes me an idiot also. I stopped eating ice cream since and in 5 days I lost over 3 pounds as I am fairly active also. Your statment about "dairy" makes me wonder now if this is why my PSA was high ?. Right now, being my own advocate so to speak, I wonder if I should stay on my current diet which is good as my wife does not really buy any junk food and reads every label, then have another PSA level done in a week rather than that bone scan right away as my doctors want. I am a retired master residential remodeler of 42 years in business which tell you something. I like everything as perfect as can be...........so do doctors and in the trades, we feed our friends and other trades work to keep the work coming. I know this is what the medical profession has been all about and is getting worse, heck, dentists, Lawyers, eveyone does the same. It seems to be all about the "almighty dollar" as the "love" of money is one of the 7 deadly sins. Now I off on a tangent and I am getting tired and confused. So I will thank you now and mentally digest all of this. As I mentioned before, I feel like watching another PSA level test and then if it is still high, get the bone scan. Thank you again and please feel free to respond and even ask me questions if you wish. I have always been told I an too honest for my own good most of the time,LOL.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I don’t know whether or not binging on ice cream would have caused your PSA to spike but in my own case, the complete elimination of dairy did serve to dramatically lower my PSAs in about an eight week period. The biggest problems with dairy and red meat today, in my opinion, are the growth hormones given to so much of the product that reaches our grocery stores amplifies the IGFs already present. These IGFs (insulin growth factors) have the effect of giving candy to cancer.

While many men eat dairy and red meat in large quantities and never develop cancer, the statistics worldwide should give you pause. In China, for example, prostate cancer is a rare disease, affecting about 1 in 100,000 men compared to the 1 in 6 that will get it in Western nations. When Chinese immigrate to the West and adopt western diets, their cancer rates equal white males within a generation. There is essentially no dairy in China (considered baby food) and people quit milk intake after weaning. Similar statistics hold for breast cancer which is like a sister disease to prostate cancer. Humans are the only mammals that knowingly drink the milk of another species and we don’t need milk after weaning. Humans did just fine before cattle were domesticated about 7,000 years ago. The dairy industry will undoubtedly take exception to this position.

Personally, I don’t think it’s enough to just “read the labels.” I think that if you’re going to pursue a cancer healthy diet that you must eliminate ALL dairy and significantly cut back on red meat to a few servings a month. I replaced my dairy with soy milk and use other soy products as a source of protein in place of red meat whenever possible. Although I was initially quite leery, I found soy to be quite tasty and after a day or so you won’t miss milk at all. Soy milk is also supplemented with calcium and Vitamin D. You will be pleasantly surprised to learn that they have delicious soy ice cream, yogurts, and cheeses and you can pretty much replace milk in cooking with soy. Rice milk is another product I use a lot, particularly on cereal. I travel a lot and it’s hard to find dairy free products on the road, but if you are persistent you can usually find something good to eat that doesn’t involve dairy.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

I use soy coffee cramer and eat cereal woth 2% milk once or twice a week. You are correct that I cannot tell the differnece in between the two. Candy was my downfall until ice cream took over, that that is gone also. I talked to my older sister last night who has much exoerience with taking care of the elderly and has worked for many doctors. I told her I feel rushed again into all of these tests, so she said than study a little more. then make your decision. Just now I got off the phone and cancelled my bone scan as I want to get another PSA level done in about one week or two. I am going to start taking Omega 3 fish oil today also for the first time. My sis ter in florida is absolutely livid about what the doctors do to the elderly as they do not have the strength nor the help they need, so when the doctor says, "do it now", they do it. It is also a money game for sure.
When I got my blood work back from last Monday, only 50% of the numbers were there, so I am going to investigatge also. I hope they are not overcharging my Medicare for tests that were not even done. One of my good friends is Korean and about 65 years old, he tells me what he eats, etc. Yes, one does not see any animals drinking beer or milk after weaning, even though cats love it, it is not good for them. Do you live in Texas by chance, just a persoal quesion with no obligation to answer. Thank you so much for all your help and advice as you actually sound better than a licenced MD. :-)

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

GLM,

I'm in Southern California. And regarding the percent fat in milk, it really doesn't make any difference whether its skim milk, low fat, whole milk, or raw milk. They all have the same level of IGFs.

I agree with you that many of of the elderly, particularly those without children to help them through the process, are led blindly into procedures and tests that aren't necessary. Part of it is probably to blunt the possibility of litigation if a condition was overlooked, but I agree that a lot of it, particularly with the way Medicare is set up to pay, is done just for money.

Even in the case of men who are diagnosed with PCa in their 50s or 60s, too young to really be considered "elderly," we are frequently led to slaughter like sheep. We get diagnosed and told we have cancer, the big C, and we are keenly anxious, most of us don't know anything about long term statistics, treatment options, or even the rudimentals of the anatomy surrounding the prostate or even what the prostate does in the body. Most lay men, particularly when they are newly diagnosed, do not have the background to fully understand what they are being told. Doctors tell us they can "cure" it and even though we have to give "informed consent" prior to treatment, most men really have no idea what they are signing up for. I think there is an epidemic of overtreatment for prostate cancer in this country and a lot of doctors are making a lot of money on it. On the other hand, I don't think we can completely blame the doctors or Medicare. We each have our own responsibilty to be an informed patient. I think the most successful outcomes occur when the patient and doctor form an equal partnership, with the majority vote going to the patient. Fortunately, there is an abundance of information available today for men to study and learn enough to make intelligent decisions. For many, unfortunately, that learning process too often happens only after something goes wrong.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

I am from N.J. orginally, then Texas twice, and Lake Elsinore in S.Ca. for 5 years. You may live in San Diego or Temecula and your diction reminds me of either an attorney or a doctor. I know about the milk contents as it is basically all the same.
My 68 year old sister from Boca Roton, Fl. stressed that fact about the Elderly are being run over like a steam roller by the medical profession.
All your comments make perfect sence to me however all of us are not Oncologist as most of the time I wish I was a dentist rather than a retired house doctor. This being said, I changed my diet a week ago and NO ice cream for 7 days now. I lost 4 lbs. already and started Omega 3 fish oil yesterday. I faxed a cover sheet, an introductory letter and this entire 5 page discussion to my family doctor. He called me and very politley knew the message I was sending. He had no issue with this so I am getting my PSA lever retaken in 9/27/2010. I cancelled the bone scan for now, and then take it from there. He belives his lab results of 2.2 on my current PSA, so I asked him what if come back 1.0? He sort of laughed and said, " I would not belive or trust those results. LOL. He would also strongly recommend the bone scan would be an almost necessary test because of my back problems which I had long before the cancer. So from 2009 to 2010 my PSA went from 1.9 to 2.2 and all of a sudden after he talked to my Oncologist, all these test are "recomended and necessary" now. So now in one week after my new PSA is read, I am back to square one. This, needless to say is blowing my mind. BTW: My father did die of prostate cancer at age 80 as it metatised to his liver. He was taking some kind of shots to lower his testoserone I imagine, however his PSA was 9. I can only guess that that Pa. horse doctor assumed my dad would die before the cancer killed him. It was an awful death when the liver is shot. Thank you as you keep me leaning. Most od the time I do not know whether to shake the doctors' hand, or punch him in the nose.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I do live in San Diego but am not a doctor or lawyer. Just a retired navy guy who is still working because its more fun than playing golf all the time and I still have a mortgage to pay off (thanks to a counterpart of yours...a whole home remodel a few years ago). If you click on my information I've posted a few blog entries about my background and how I came to where I am today with respect to prostate cancer.

When I knocked off dairy and cut way back on the red meat my weight dropped about 10 pounds in a few weeks then it pretty much stabilized. It's still going down but at a slower rate and if I were more diligent about regular exercise I am sure the pounds would go off quicker. This is important as there is a strong relationship between higher body mass and several types of cancer, including PCa.

There is a lot of skepticism in the medical community about dietary supplements or "no dairy" approaches. I believe the general feeling is that if they're not cutting or radiating you or prescribing a drug then it won't work. My feeling is that there is enough information out there about dairy that has strong correlation to both breast and prostate cancer that it should be taken seriously. Eliminating dairy won't hurt you as long as you ensure your calcium and vitamin D levels are within acceptable ranges, and you certainly don't need dairy to get those. (Although the American Dairy Industry would say otherwise). There are other things that have shown to reduce PCa too...and I am a big fan of pomegranate juice although if you're taking a statin like crestor you should check with your doctor and there is some indication that they may interfere with each other.

Of course, if your PSA does not come down you will want to consider other courses of action but it just makes common sense that if you can control your PSA with diet why subject yourself to more treatment or drugs that will block testosterone and potentially cause some rather severe side effects.

With your father's history, you and your own experience with PCa you know you have a predispositon for this disease and it is something that you will need to monitor closely for the rest of your life.

And don't forget...no sex for 48 hours before your next blood test for PSA. Having an orgasm before a PSA test will temorarily increase your reading by 1 to 2 points. You don't want to find yourself in more treatment just because you got lucky!

ob66
Posts: 220
Joined: Apr 2010

It is so interesting that GLM brought up the doctor/lawyer thing, for my wife and I have enjoyed Kongo's well informed and written posts for as long as we have visited this site, and both of us had conjured that you were a doctor, Kongo. I think it is the way you give your advice with such authority that gave us that impression along with you knowledge of some not too widely used terminology. Well, we were wrong. One question I have Kongo, is that you emphasize the non dairy, non red meat dietary approach and seem to espouse it very strongly. You do so to the point that any dairy or red meat usage I entertain is done with guilt. Yet, at the same time, you are somewhat casual about exercise. Since I am much the reverse, I wonder why someone who is so committed to diet, is not so much so to exercise??? Answer only if you care to, for it is really none of my business, but I would have guessed a stronger exercise program from someone so committed to diet. Wondering minds can be dangerous.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ob,

I had to smile when I read your post. Certainly no white jackets in my closet, as long as we don’t count the white dinner jacket I wear about once every two years. I don’t mean to sound heavy and don’t want anyone to misconstrue any advice so maybe I should “dumb it down” a bit. What do you think? And I am so sorry if I made you feel guilty about that nice cold glass of milk with your pancakes but I’m secretly delighted that you’re thinking about it.

You DID make me feel guilty about the exercise and my seemingly casual approach to fitness. I really do think it is very, very important, particularly for those of us with cancer. I suppose that it’s one of my many failings that I can’t seem to muster the same energy toward a healthy exercise regimen as I do about other things. I know I should, I wish I could, and I have all the best intentions to do something in that area soon and it’s not that I am a complete slug. My most often used feeble excuse is that I do travel a lot and although some trips are longer than others it’s hard to get into a routine. But all my hotels have gyms so that excuse isn’t a very good one. I used to be a distance runner and logged 9-10 miles a day but a couple of moves, job changes, and schedule changes put it in the “too hard” category, but I know that’s just another excuse too. Thanks for making me face that aspect more realistically.

I came into the diary thing in an interesting way. In the late 90s I had lunch with a woman in London who had just finished a book about her struggle with breast cancer and was meeting with my friend, a literary agent at his club just off Leicester Square in the West End. In any event we all had a long lunch and I heard first hand of how she beat breast cancer after a double mastectomy, radiation, other operations, chemotherapy and so forth. At the end a large, cancerous lump began growing in her neck and they basically gave her a month to live. She used her background to try to figure out why Chinese women don’t get breast cancer, at least at anywhere near the rates they do in the West, and identified dairy as the biggest difference in diets. She eliminated dairy and in six weeks her cancer had disappeared and hasn’t returned. My initial reaction was pretty much skeptical and “miracles happen” but she was so well credentialed, so well spoken, and so deeply passionate in an endearing way that I remembered her quite clearly ever since and kept a copy of her book. When I was diagnosed, I recalled our lunch and wondered how she was doing and discovered she is still going stronger than ever and has also published a book about prostate cancer and the correlation of dairy to both breast and prostate cancer which she termed “brother-sister” diseases. I got the prostate cancer book and re-read her breast cancer book and became a believer. I find it much easier to believe when something is affecting you personally. Her name is Professor Jane Plant and I commend her books to you without reservation. You can find her on Amazon. Basically, her premise is that while milk is great for baby cows, we don’t need milk at all after weaning and that the chemical makeup and enzymes in dairy and cattle products contain growth factors and hormones that are like candy to cancer.

I also wondered about why the Chinese didn’t do dairy. Why was it that Western populations eat milk, cheese, yogurt, and so on it ever increasing quantities but yet the Chinese, other Asian cultures, and others in a few other parts of the world do not. I recalled a book I read several years ago by Jared Diamond called “Guns, Germs, and Steel” that basically examined the reasons why Western Civilizations ended up invading the New World and not the other way around. Part of the discussion concerns the domestication of animals and the effect that had on incumbent civilizations. Cattle were domesticated about 7,000 years ago in the Indus Valley and the cattle and dairy industry basically spread from there into Western and Northern Europe. There never were any cattle species in China that were suitable for domestication so they never developed cattle as a protein source from either meat or dairy. They domesticated ducks, pigs, geese, and some other fowl but no cattle. It wasn’t till much later in history, less than 1,000 years ago, that any cattle were introduced to China and by then the culture revolved around soy, supposed domesticated by a mythical Chinese Emperor named Shennong (I think it means Divine Farmer) about 5,000 years ago. Today, the Chinese consider dairy products “baby food.” Interestingly, as their diet has become more Westernized in the past generation, prostate cancer and breast cancer, particularly in urban areas, is increasing significantly.

Anyway, that’s how I got onto the dairy thing. I’m not some mad cow wacko…and if I had never met Professor Jane Plant, I would still be putting extra cheese on just about everything and drinking a couple of glasses of milk a day. If you work on your dairy, I’ll work on my exercise.

ob66
Posts: 220
Joined: Apr 2010

I will work on my dairy/red meat....The challenge is not a betting/punitive one, but one that will help us both, hopefully....And please, please, do not dumb down any of your future posts, or I will not only miss your prose but have most of this board after my carcass.....So, cheers to Professor Jane Plant, and we shall check in on each other periodically...Bob

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

I have often wanted to be a private detective or an FBI profiler as I love to watch " criminal minds" and "without a trace" each night. :-). The part of your home that shows, your attire, and Palm tree leaves spells "success" is why I guessed San Diego.
Well a quick update is that I am getting a repeat PSA next Monday, however in the meantime today I received, at my request, a detailed print out of my lab work that was done on the 13th of this month. My FREE PSA is "10" which by their standards and others, It appears to me that I have a 56% rate that my cancer has returned. Of course I am not happy about this, feel I was lied to in 2006, and would like to put my Oncologist head under that linier excellerator for 8 weeks............then just say when it is all over and he asked why the side effects, I will just say as he did, "I am sorry".
However we are not the judge in this crazy world, as only God is and has a plan for everyone before they are even born. "He preparest a table before me in the presence of mine enimies". When I learned what this meant, I was quit taken by it, as many people do not.
As for your remodeling job, it is just business as ladies shoes have a mark up of about 90%. LOL. If one has the tools and the ability to use them well with experience and is also a transplanted Yankee,:-), Remodeling was my "bag" and I loved it. We just loved smaller jobs and meeting people and have finsined projects from coast to coast that may last 100 years after we are gone. We offered 70 differnet services and for the last 12 years out of 42, my wife and I were a team, like a surgeon and a great surgical nurse.
I know about the "sex" thing also. My wife is a georgeous Sicilian woman 10 years younger than me, and we have been married for 30 years, YIKES. Just remember what Dr. Phill McGraw says, " Sometimes it takes all night, to do what we used to do all night."

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Kongo
Posts: 1167
Joined: Mar 2010

GLM,

I don't know if free PSA following treatment has the same significance as before treatment. I guess it makes sense that it might, I just don't know for sure and can't recall reading anything that used free PSA after IMRT as a predictor for rising levels of prostate cancer. I would put that question at the top of my list of questions to ask your doctors. Maybe another member of the forum can shed some light on this. From what I have read free PSA is challenging to interpret as it has even more variability than regular PSA and can change levels in a single day for no apparent reason. Determining your PSA velocity and doubling time is, I believe, a more reliable indicator of future growth. Frequently, nothing is ever what it seems...for example, the picture you referred to was taken outside a Chinese restaurant at a resort in Cancun. So, don't come out of retirement for CSI just yet...LOL.

You are awfully hard on your doctors. After all, you gave them "informed consent." At the time you were treated you had all the indications that you had a low risk cancer that was very treatable and you chose a state-of-the art treatment. Life is full of speed bumps no matter how carefully we try to navigate it. Since we can't rewind the clock but can only go forward, I think we should focus our energies on things that we can actually do something about and you seem to be pretty highly motivated in that direction.

I'm looking forward to what you next PSA reading shows. I just had blood drawn today for my three month post treatment check up which is scheduled for a week from Friday. I think all of us with a PCa diagnosis begin to feel "PSA anxiety" every time one of those events occurs.

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G.L.M_61
Posts: 30
Joined: Sep 2010

I had a long reply composed and ready to send, then all of a sudden, "POOF", it was gone and lost. I will re answer ASAP and I will be more than happy to share any results with you, and also ask your opinion before taking anymore tests. Visit www.Allexperts.com some day where you can talk to a real professional about anything, and learn about them before hand. I used to be a member.
There are no rewinds in life for sure and our goal is to learn at leats one thing a day. If you wish to learn more about us, or a little, go to www.google.com and type in 972-843-2649. See what comes up. Have a good day.

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G.L.M_61
Posts: 30
Joined: Sep 2010

Yes , I would love to keep in touch , especially since you are just recently finished with your treatment. What type of trestment did you choose? if I may ask. Like a said, I am hardest on myself and there is no rewind, so forward we go to the next chapter. You say I am hard on my doctors? This is propbably because I listened to all of them, did what they said when they wanted me to, and found many inconsistencys alsong the way. I was not in two business for 42 years because I was a thief or a liar. I will have my new bloodwork back the middle of next week. I believe when I finsined mt IMRT, 40 visits, I was told that my PSA could take about 6 months to get to it's lowest point. Good luck with your tests and I would love to keep the ball rolling. BTW: You must have had your chopsticks in your pocket, however I did see some crumbs of fortune cookies on you suit, LOL. Of couse it was at a chinese resturant and Kongo is the name of your Dog as you shipped there many times when you were in the service. :-) Chat soon and take care.

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Kongo
Posts: 1167
Joined: Mar 2010

GLM,

I chose to have SBRT radiation with CyberKnife. It is similar to IMRT but somewhat updated from what was available when you were treated. My CyberKnife treatment was five sessions, each about 45 minutes long with a rest day in between. The CyberKnife systems tracks prostate movement in real time and adjusts for the movement so that all of the radiation is concentrated within the prostate, minimizing the potential for urinary or bowel toxcicity. I was treated in June and have my 3-month follow-up next week. So far there have been no side effects at all. A couple of others who post here have also recently chose this treatment and they all seem to be doing well, at least at this early stage following radiation.

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G.L.M_61
Posts: 30
Joined: Sep 2010

I have never heard of that treatment. I had the IMRT with 3 tatoos on my side and front. I was in a dark room and a sonogram was done before each treatment as all organs miove in the body dialy. After they located the exact position of my prostate, the table moved,with me on it staying still, and lined up my 3 dot like tattoos with the lazer beams all around the room and ceiling. The the treatment started hitting me with various strenghts of radiation and controled as best as possible to the carcer area. The beam started at my side, then about 2:00 as if you were looking at a clock, then 12:00 noon, then 10:00 AM, then finally at my left side. A total of 5 angles and it took about 4 minutes or less each time. I went 5 days a week for 8 weeks. I never felt anything except a little tired at the end of the last 3 weeks as they said I would. I also had to drink a full bottle of water before treatment and hold it for about an hour so my bladder would expand and they could see better. I think that was the hardest part. Twice the linier accelorator broke down right in the middle od a treatment. I had to drive 60 miles round trip, 5 days out of the week and rest on the weekend. I figured it out once and it was like driving from N.J. to your house in L.A. I get my PSA taken , etc. this coming monday and maybe 1 or 3 days for the results. I was happy as hell when this ordeal was over and they told me I was cancer free. After hearing that I was fine until this new BS poped up. Needless to say I am very shocked, however it is what it is and we must do what we have to, as the alternative is not my choice right now. I have too much left in me and things to do before I leave this earth. Only God knows when this will happen, and NO doctor has any right to tell another patient anything such as, you have 2 months to live. Good luck to you and we can keep each other posted if you like.

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Kongo
Posts: 1167
Joined: Mar 2010

GLM,

CyberKnife was just emerging when you first sought treatment so I'm not surprised you haven't heard of it. IMRT was then and continues to be a first rate method to treat prostate cancer. Unfortunately in your case, you happened to be one of the relatively few where PCa was likely growing someplace other than the prostate and was undetectable. I would be very surprised if the PSA rise you are reporting is coming from a cancer within the prostate. It's certainly possible, of course, but most radiation failures (if that is indeed what you are experiencing) occur in sites distant from the prostate.

In a similar vein, men with RP and negative margins and who are told everything was contained in the prostate and had low Gleason scores even after removal, find themselves facing a rising PSA.

This disease never truly contains itself to the prostate. I think that when it first begins to form cancerous cells leak into the bloodstream, I also think biopsy needles might be a factor in spreading PCa as well as surgery itself when the prostate is cut out across the base.

If you remember any of your high school physics, there is this principle called the Heisenberg Uncertainty Principle. It holds that for particles at the atomic level, the very act of measuring them changes their behavior. I think something like this occurs when biopsy needles go in and of out of the prostate and surgeons cut on it. While many experts say that biopsies and surgeries don't spread cancer there are several papers that suggest just such a thing occurs.

In any event, prostate cancer spreads. Doctors should be more forthcoming in explaining the dynamics of it to new patients but most patients just want to know whether or not they've been cured and want things in black and white rather than shades of gray.

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G.L.M_61
Posts: 30
Joined: Sep 2010

I thought that "proton" radiation was the best, however super expensive and at that time, I think there were only two of them in the country?
Moving on, I did have a prostate biopsey and 1 out of 12 samples detected Pca. So the urologist said after sending the samples from Garland , TX to his own lab in San Antonio,and I waited two weeks for the results.I did meet another man with the same scenario, he did not want to talk about it at all, actually his wife told me to never bring up the subjuect to him, so I did not.
Are you telling me that my cancer could have spread to other parts of my body even if it was not in my prostate anymore? and that is is still refered to as Pca. where ever it is? Is this is why they want me to have that bone scan, correct?

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Kongo
Posts: 1167
Joined: Mar 2010

GLM, that is exactly what I am telling you. When prostate cancer leaves the prostate and goes to the seminal vesicules, lymph nodes, bone or liver or lung, for example, it is still prostate cancer. When it leaves the prostate to another organ it also tends to grow faster and many prostate cancer experts believe that there are inherent built-it protectors that sort of keep it under control while it is within the prostate but that once its loose, there isn't anything to slow it down. In the lymph nodes, PCa grows about twice as fast as it does inside the prostate. In the bones it grows about four times as fast.

The body generally does a pretty good job in fighting cancer with its own immune system but eventually, a few of those cells that leak out of the prostate will eventually find a home someplace else and start to grow. One of the most likely places is the tissue immediately surrounding the prostate area and the seminical vesicules and lymph nodes.

Usually, as I understand the reports I have read, that radiation does a pretty good job in killing the PCa within the prostate, and IMRT is as good or better at that than most. Although for sure there could be some residual cancer there, I would think there is a pretty good chance it is somewhere else. Most likely it is at a microscopic level at this stage and is going to be very difficult to detect which is why follow-on testing we talked about in earlier posts are important. The bone scan is only one of many of the tests that can be done and given the numbers you have described, I would be surprised if they were able to see anything there but it can't really hurt you and at least they can say that there are no measurable lesions there that could be detected. There are other tests we discussed earlier that might be more relevant in your case.

One thing you metioned in your last post sent an alarm bell off if I read it correctly. Are you saying that your doctor sent your biopsy sample to a laboratory that he owned in another city for analysis? Did anyone ever do a second opinion on the biopsy? I don't know if sending the biopy to a lab you own then using that to recommend treatment based on that result is illegal or not but it certainly seems borderline to me. Just my opinion.

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G.L.M_61
Posts: 30
Joined: Sep 2010

The last parragraph you read in my last post was exactly what I meant. After the biopsey that urologists that was recomended by by family physician at the time, they all run in cirlcles, the money circle. The drawings after my biosey looked like my 5 year old Grandson did it. I still have them. I asked several years ago to have my biopsey sent to me, however they would only send it to another Oncologist. I did not have the money to do so, and even if I did, who knows who's biopsey they would have sent me. Just like the new version of "The Fugitive" where his partner sent the same samples from the same liver in an attempt to give the public the new wonder "B S" drug, "provasic". REMEMBER? This was when I was still in business and my wife and I were working for this couple who he had the same urologist, and they also quetioned why he sent the lab work to San Antonio and made that poor couple wait over two weeks for the results.This Urologist office seemed more like a kennel if you ask me, and it was located right next to one of the best hospitals around. I attempted many times to cross refernce and catch that guy doing something wrong, hoping to find another complaint or something like that. Well, what would it matter any way as there is no rewind as the damage is done, right or wrong. The chances of that urologist finding cancer in my prostate at the time with only 12 biopsies was like finding a needle in a haystack. That needle he found most likely paid off his house, or the patients before me. I know, I bought him a beach house in Can****, next to that restuant you ate in. :-)

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Kongo
Posts: 1167
Joined: Mar 2010

I sent you an email with my phone number.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

I must have gained your trust and you have done some reaseach maybe with the clue I gave you to find me. I did not read nor find an e-mail from you today for some reason. I might have deleted it by mistake or it went into my spam folder. Please resend it and if you wish, in the subject line, write KONGO, this was I will recognize it. I also put a photo in my profile of me and my wife however as I told you before, this is the first "discussion board" I have ever been a member of so I am not a PC wiz, for that is my son's forte. I eagerly await a new personal contact from you. Maybe I have missed something. I would send you mine however I do not know if this post is private or not. Thank you.

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Kongo
Posts: 1167
Joined: Mar 2010

GLM

The email is through this site...the American Cancer Site. If you look on the left hand side of this browser page you will see a link that says "CSN Email". Check that. Will send you another one just in case.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

Hi again as I have not been on this site for a while. Just to see how you all are doing with your post treatment. I am still off the dairy and driving my wife crazy, LOL. It is all good and my doctor told me as long as I feel OK due to the significant drop in my PSA in just two weeks, I do not have to go back until December for a recheck of my level. Hope you and yours are doing fine and next time, travel to the Dallas Metroplex. N.Y.C. ? Get a rope. LOL. C-YA

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

Mrs pjd;
Thank you for your rely as this is the first time I have ever been on a discussion forum or any Internet group such as this. You have ben very kind and helpful with your time. Have a good Sunday. I just always seem to feel that doctors rush into tests, and more test without giving the patient time to think.

mrspjd
Posts: 694
Joined: Apr 2010

GLM,
Agree with you wholeheartedly that many doctors tend to "rush" to add'l (at times unnecessary) tests/testing, (perhaps motiviated by $$)...that is why it is sooo important for one to be an informed and educated patient and your own advocate for what it is you may or may not need, re testing, treatment, and over-treatment. It can't be said too many times--do your own homework and thorough research prior to agreeing to what a doctor recommends...you should never feel rushed or pushed into any kind of tx or testing by a doctor. In addition, always obtain several 2nd opinions.

G.L.M_61's picture
G.L.M_61
Posts: 30
Joined: Sep 2010

Mrspjd;
"Perhaps motivated by money?" this is an understatement in my book and many others. Doctors are humans, not Gods as many people seem to think. Now a days, if one's cholestorol is 2 points over normal, your doctor tells you that you are a diabetic, and he wants to put you on a pill. If you can read the reply I just posted to "Kongo", it will tell you more about me and about my "ice cream" addiction so to speak. :-). The more I read from all the kind people on this site makes me feel better that others care, however I do not feel that competant to help others, at least not in this subject matter right now. I am going to talk with my doctors ASAP in a very diplomatic way, ask more questions, and be my own advocate which is a word I had never used before. I just feel like a victum of the system right now and that I had been lied to way back in 2006 and just last Monday. I am a human being, not a piece of paper with the word, "NEXT" on it. I worked in a hospital for three years in my early twenties. I was in the x-ray and recovery room departments. People just become numbers at times. Thank you again...........with the help of God and what gray matter he gave me, along with my lovely wife, we will get through this.

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