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Question lower PSA

j22411
Posts: 8
Joined: Feb 2012

Hello,

My father was diagnosed with Prostate Cancer at Stage 4, mets to the spine, Gleason score 9 (4,5)in December 2010. He had been followed by a urologist for several years prior to the cancer diagnosis for what was thought to be BPH and, about a year before his cancer diagnosis, he had a procedure whereby a laser was used to correct the urinary problems he had been having--this laser procedure was performed in lieu of a TURP so no tissue was taken for biopsy. His urologist was never concerned about Prostate cancer as a possibility because my Dad's PSA remained "normal". However, in the fall of 2010, his PSA began to rise (went from normal to around 11 in I think about 4-6 months) and his primary care physician urged the urologist to do a biopsy and cancer was found in all the tissues samples taken. Dad is now being treated with androgen deprivation therpay monthly as well as medication for pain. His last PSA value as of 3 weeks ago was 1 and it had been .8 four weeks prior to that. My first question is that, as I read this site and others, it seems like many men with advanced prostate cancer have PSAs in the hundreds or thousands yet my Dad's never got that high, leading to no medical intervention until the cancer was so advanced--why would this be? Also, I was told by an advocate from another cancer advocacy group that my Dad's PSA should be below 1 and was told by another advocate with the same organization that my Dad could be a candidate for low dose chemo along with the androgen deprivation therapy . Thuis, my second question is, since his PSA hovers around 1, should I be concerned that he needs a different treatment? Dad is happy with his oncologist and is happy with a "1" so I don't want to "upset the apple cart" but I am concerend and confused. Can any one help?

Thank you!

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

J,

Sorry that your family is dealing with this situation. This forum is a good place to get a lot of relevant information that you and other caregivers in your family may find useful in helping your father make decisions about how to treat his cancer.

One very big piece of information you have left out of your background post is the age of your father and how is overall health is outside of the prostate cancer. The answers you might get will vary greatly if your father is in his 60s say and otherwise hale and hearty or if he is in his 80s and suffering from other conditions. Please provide as much information as you can.

The PSA test alone is a notoriously poor predictor of prostate cancer. If indeed the urologist that was treating him was only using that as a gauge to measure whether or not he had prostate cancer then your family has been dealt a great disservice. I suspect, however, that there were other things in play (perhaps age?) and that without any other physical symptoms the urologist was treating BPH which is very common in men as they age.

As prostate cancer advances it actually produces less and less PSA so it is not uncommon for men with advanced prostate cancer to exhibit low PSA scores. It is quite possible that the rise in PSA your father experienced was a result of cancer within the prostate spreading to distant places and growing there.

Hormone treatment should knock the PSA down to less than 1. When it begins to rise after being curbed it is a sign that the cancer is becoming resistant to HT and can actually generate its own testosterone. There are other drugs similar to HT that may be appropriate at this point and I would encourage your father to seek other opinions (from professionals in prostate cancer...not people who have experience with other cancers).

Chemotherapy is usually considered the very last option in the battle with prostate cancer. The side effects can be significant, particularly if the patient is elderly and in poor health. I have already made a personal decision that if in my case cancer advanced to such a condition, that I would never subject myself to chemotherapy. But everyone is different and so much depends upon the age and other health factors.

It is also important that as a family you put this diagnosis in perspective. Your father has advanced prostate cancer. There is no cure for this condition. There are treatments that can extend his life statistically anywhere from a few months to a few years but unless there are other health factors (most men with prostate cancer, for example, die of heart disease not PCa)it is most likely that this will eventually take him. He may have several good years before this happens so balancing treatment against quality of life is an important aspect of this disease that only your father (if he is capable of making the decision) or the designated caregiver can make.

As your father's condition progresses it is likely that the mets in the spine will begin to cause significant pain. This condition can be successfully treated with radiation but it is only a pallative treatment. It is not going to cure the cancer.

Please provide more information about your father's background.

Wishing you and your family the very best during this difficult period.

K

j22411
Posts: 8
Joined: Feb 2012

Hello K,

Thank you soooo much for your response!! My dad is 69 years old and has controlled high blood pressure, gout, arthritis, and allergies. He has never had a stroke, heart attack, or any other significant health event prior to this cancer diagnosis. He still works and drives around our state for his job despite some sometimes nasty back pain. He enjoys the company of his grandchildren and is a wonderful father. Prior to his BPH diagnosis, his symptoms were blood in his urine and frequent urination. When I spoke with the urologist, the only reason he indicated he had not considered cancer was the PSA. We as a family have tried to put the anger and the hurt behind us because we don't see that as helpful for healing but I have to admit, the thought of a lawsuit crossed my mind (we are not greedy, litigious people). I am concerned that his PSA is only at 1. I guess it is true that it ideally should be below that from your response above. The reason I wrote about "upsetting an apple cart" is that my dad literally gets freaked out by any mention of his PSA perhaps not being what it should be and his doctor is happy with it at 1--I have mentioned to his oncologist on the side that I was concerned about the 1 and he basically told me I should not be concerned because dad's PSA dropped in response to the shots and dad's pain has remained "the same." Truth be told, I'm afraid to mention that the PSA may not be where it should be but I'm also afraid not to say anything because, if and probably when dad dies of this disease, I don't know if I could bear the guilt of knowing maybe something else could have been done sooner.

I'm so sorry to dump all of the emotional stuff out with the medical facts as I understand them, but I am really struggling.

Thank you,
J

j22411
Posts: 8
Joined: Feb 2012

double post

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

J,

I don't want to pile on the urologist but blood in the urine and frequent urination are also physical symptoms of prostate cancer that, in my lay opinion, should have triggered a higher degree of curiosity on the doctor's part. I appreciate your attitude of putting things behind you and you can't replay this one anyway so the big decisions your father has to face now have to do about what he does from now on.

As I mentioned earlier, the PSA test is well known to be a very poor predictor of the presence or lack of prostate cancer. Statistically it is only accurate about 50% of the time, essentially the same as flipping a coin. The PSA test in conjunction with other factors such as physical symptoms, calculation of PSA density (a simple calculation that your GP should have been able to do), PSA doubling time (an indication of potential aggressiveness) and so forth can be a valuable tool but your doctor should have known that a man suffering from BPH alone would normally have a PSA higher than what your father's score was. To me, that would have been a clue to look a bit harder as advanced prostate cancer usually is characterized by low PSA scores.

There's a lot about PSA written in various posts if you care to go back through several pages of threads on this forum.

In any event, your father has responded to HT and as long as his PSA stays low then it is doing its job. Keep in mind that HT is not considered curative. Eventually the prostate cancer will develop resistance to the hormone therapy and you will see the PSA scores begin to rise again. There are other drug combinations that might help. Remember that the HT will not curb all of the cancer, just most of it. Eventually it will come back although this could well take several years.

There is a new drug that has been recently approved by the FDA called Provenge. You may wish to research this medication and one place to start would be with the drug company website at www.provenge.com. Provenge acts differently from either HT or chemotherapy in that it uses the body's own unique genetic system to attack the cancer cells. Early trials have shown that Provenge has been successful in extending the life of men with advanced stage prostate cancer. It is covered by Medicare if your father's diagnosis qualifies him.

As I mentioned, if the mets on his spine begin to cause pain, this can be treated with radiation to good effect. Again, this is not curative, but it will have a significant impact on reducing the pain and improving the quality of life.

As I mentioned earlier, chemotherapy, even in low dose protocols, is an option I personally would not choose. I read an article several months ago that indicated over 80% of oncologists in the USA would not recommend chemotherapy for a family member. Given your father's other health issues, there is a high likelihood that it would have a significant impact on his overall quality of life with no real long term benefit. Of course, this is just my opinion, and I would encourage you to discuss this frankly with other prostate cancer specialists.

Speaking of other specialists, I strongly encourage you to work with your father to seek some second opinions from doctors completely unrelated to his present medical team. Neither your GP or urologist have done your father any favors up to now and, in my opinion, I think it's time to seek second opinions from someone who really understands prostate cancer. If you post your location there may well be others in the forum who might be able to offer some names. if nothing else, you can do an internet search for prostate cancer specialists in your area. I am assuming your father in on Medicare at the point so the cost of these consultations should not be an issue other than the customary copays.

J, I appreciate your concern for your father and am touched by your desire to help him make the right decision but this is not your fault and you bear no guilt whatsoever in whatever may happen in the future. Your father seems fully capable of making his own decisions and he alone bears responsibility for his own health. It is normal for most patients to trust their doctors, particularly when they have been with them for a long time. A cancer diagnosis is scary and confusing. It has all kinds of terminology and nuances that we are not familiar with. The only course is to embark upon self education and learn to become an empowered patient. If men choose not to do that (or don't realize that they SHOULD be doing that) it's not their children's fault. Your responsibility is to love your father, support his decisions, and provide him with whatever advice he might ask for or be open to. Please don't feel guilty about things beyond your control.

Prostate cancer is a particularly odious disease for a lot of reasons but in my mind the fact that there are so many treatment options makes it very difficult for the average patient to know what to do. Each specialist tends to tout their approach and downplay the others. Most men end up making emotional decisions based on the "trust" they have for whatever doctor they saw last and fail to do their own independent research and fully understand the impact of their decisions. Granted, many men may not have the educational background to do this or have worked in careers that are not technical in nature so they are uncomfortable in learning new science at a late stage in their life. In any event, many men get hung up on things like your father's apparent aversion to mentioning PSA. Again, this isn't your fault.

When I was diagnosed with prostate cancer (a low risk version -- not like your father's situation) two years ago I had only the vaguest idea of where my prostate was even located and didn't know what the letters P-S-A stood for. I'm only a novice, of course, but have been reading and studying constantly since then. It certainly is possible for a lay person to garner a solid understanding of the mechanics and progress of prostate cancer, what the different treatments do and their potential side effects, and what you should worry about and what you should not worry about.

I hope that you encourage your father to start his education. It's never too late and introducing him to this forum where he can interact directly with other men who are going through (or have gone through) the same thing he is might be a good place to start. It could well be the key to getting him to open up a bit more.

Another thing you may wish to investigate is the impact of diet on his overall health but for prostate cancer in particular. One book I heartily recommend in "The China Study" as a start. It's a thick book but an easy read. One of the things you will begin to discover is the connection between dairy and red meat (particularly dairy and red meat in the United States) and the effect these proteins have on cancer growth. The growth hormones our dairy and feed cattle are fed significantly amplify the Insulin Growth Factors (IGFs) from dairy and red meat that are like giving cancer candy. When you compare Western diets that are very high in dairy and red meat to diets in other parts of the world and then compare the cancer rates, it should get your attention. For example, in rural Asia where dairy intake is virtually non existent and there is a very low amount of meat in the diet men get prostate cancer at the rate of about 1 in 100,000. In the US it is 1 in 6. Similar corollaries can be drawn about breast cancer. Breast cancer and prostate cancer, by the way, are brother/sister diseases.

In any event, I would encourage you to investigate this. Unfortunately, physicians in the US have very little background in diet and nutrition and the impact this might have on cancer. My radiologist, for example, a brilliant physician from Harvard, had a total of exactly two courses in diet during his training, and that was twice the required amount. Makes you wonder.

Sorry for rambling. Again, best of luck for to your family and please drop this guilt thing.

Best,

K

j22411
Posts: 8
Joined: Feb 2012

Hello again K,

Thank you for your supportive response--somedays the guilt is just awful. My Dad has completely changed his diet to one that is almost completely vegan, with occasional fish and dairy maybe once or twice a month. He eats tons of produce and whole grains and takes several supplements containing things like lycopene, turmeric and ginger.
I am wondering if you or anyone else knows of a way just to ask another doctor some questions about PSA. I just want to know what Dad's PSA should ideally be from an MD standpoint (under, at 1, or exactly what). The reason I would like to hear this from a doctor is so I can make a decsion about whether or not to press Dad about a 2nd opinion or not--I don't want to cause Dad undo stress. His current oncologist is quite happy with a 1 but, if a 1, after about a year of Firmagon shots monthly is not where he should be, then I will know it's worth some intervention on my part. Do MDs ever post on this?

Thank you for any help you can give.

Very Sincerely,

J

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

J22411

You got a good response from Kongo covering the problem of your dad’s status and your concerns in his care.
I would add here a note about the importance of the PSA as a marker to judge success and progress of a treatment for prostate cancer. Firstly I would suggest your father to get ultra sensitive PSAs with a LDL in the two decimal places (0.XX ng/ml).
This is important when following the progress of hormonal treatments. A PSA=0.9 or 0.09 would be classified equally as 1 (one) if the assay’s LDL (low detection limit) is unitary (X ng/ml).
However, in prostate cancer treatment PSA of 0.9 have different meaning from those at the levels of 0.09.

I stress the above, particularly in your dad’s case which seems to have a type of cancer that produces tiny portions of PSA, and because of the hormonal treatment which success should get your father’s PSA to levels lower than 0.05, considered as “Remission” in HT patients.

The combination of Xgeva and Firmagon seems to be working well in your dad with apparent metastases, as we can see it in the drop of PSA. In any case, these drugs may not be sufficient to hold the progress of a Gs 9 cancer and your dad would probably benefit from a more aggressive protocol. Oncologists commonly recommend hormonal manipulation with blockades at two or three levels for advanced cases.

Cancer feeds and survives on testosterone so the above blockades are done to avoid the feeding of cancerous cells. Popularly they are named as ADT (androgen deprivation therapy) 1, 2 or 3. Your dad protocol is ADT1 with Firmagon (an antagonist) blocking the “fabrication” of testosterone (T) at the testis (chemical castration). But testosterone is also produced in low quantities (5%) by the adrenal glands and that cannot be avoided because we need the glands for other purposes. To block this "food" doctors use antiandrogens (ex; Casodex) that work by attaching itself to the cells androgen receptors (AR), blocking their "mouths". Adding this drug to the protocol it would be named ADT2.

Still some doctors try blocking another more potent source of “food” called dihydrotestosterone (DHT). This is a form of testosterone made from testosterone but 10 folds “pure”. The “fabrication” of DHT is avoided with 5-ARI drugs which added to the protocol would make it ADT3 known as Total Androgen Blockade.

ADT3 is known to work well on cases where cancer shows to be hormone dependent. You can discuss the above with the doctor and you can read details googling “ADT and prostate cancer”.
http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-treating-hormone-therapy

All treatments cause side effects to which your dad should be acquainted with. Xgeva is a drug to fight the metastatic cancer in bone. This drug got side effects causing anemia. Your dad should constantly check his lipids along other tests such as the testosterone, DHT, ALT, Dexa scan, etc.

Hope you find the peace of mind you are looking for.

The best to your dad.

VGama

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

Vasco, that is one great post. Very good input.

j22411
Posts: 8
Joined: Feb 2012

Dear VGama,

Thank you so much for the information. I have never heard of these different levels of ADT. Dad had his oncologist visit today and they told us his PSA was .8. The oncologist seemed really happy with that but I really want to explore further your information on these different levels and this idea of remission. I didn't think stage 4 cancer could ever be in remission. I will followup on this and try and digest it.

Thank you again,

J

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