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Old 10-07-2010, 04:17 AM   #1
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tetleytel HB User
Please could someone help explain further


I am writing with reference to my dad who is 62 years old. He was diagnosed with Prostate Cancer last August. To be honest we didn't really understand what it meant and I think the doctor thought we already knew as my dad underwent 4 months of tests before being given the results, and we thought since we waited so long we thought it can't be that bad as they would of seen us sooner. We were very shocked, the doctor just told us he's got prostate cancer and its in the bones. He said as long as he received the 3 monthly hormone treatment which would result in him having side effects similar to a female menopause, he would then just carry on as normal. The doctor did not add anything else and we thought ok this is not so bad.

In the last 6 months my dad has started to suffer with symptoms of the menopause, which he manages quite well. He also is experiencing pain through his bottom and around his groin, and recently had bleeding from his back passage. He is having a colonoscopy tomorrow but the bowel specialist thought it was unlikely to be bowel related.

We have since had the appointment with the consultant and this is where we are confused. His recent PSA was 1.7 arise from 0.6 in the last month, his prostate has been enlarged again for the last couple of months. The doctor was not bothered at first until I asked what his gleason score was and then he looked at the notes and said it was a 9 and now he is concerned. He is now waiting for a CT scan, but I don't really know how come his PSA level is only 1.7 and doesn't cause a concern but the Gleason score does, and if they already knew that score last year and didn't tell us what it really means.

Please can someone clarify things a little I am 1 of 3 daughters and our mum passed away over 4 years ago and our dad is all we got. How worried should we really be??


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Old 10-07-2010, 05:03 AM   #2
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Re: Please could someone help explain further

Hi Tara,

I'm sorry to hear about your father's condition. I'm not much younger myself, and am also a Gleason 9 cancer patient.

It sounds like your doctor is not very experienced with prostate cancer, or not very vigilant. The Gleason 9 score should have set off alarm sirens in his head. Unfortunately, a PSA of .6 or 1.7 is not high for your father's age, so it wouldn't necessarily have been alarming. It would be interesting to know what his PSA was prior to starting the hormone treatment. Very aggressive prostate cancer tends not to produce a lot of PSA, so it can be ignored until other symptoms bring it to the fore. But a near tripling of the PSA score in one month would tend to confirm that his cancer is very aggressive.

As you know now, your father is suffering from a serious form of prostate cancer. As it has already spread to the bones, it might not be curable. But it should still be treatable, and your father might want to see a specialist to help extend his life as long as possible. If you're not satisfied with your current doctors, you might find the web sites of doctors such as Dr. Charles "Snuffy" Myers (Virginia), Dr. Liebowitz (California), and Dr. Mark Scholz (California) helpful.

There are a couple of books you folks might read, such as Beating Prostate Cancer by Dr. Myers (who himself is a prostate cancer survivor), and A Primer on Prostate Cancer, by Dr. Strum. Invasion of the Prostate Snatchers by Dr. Scholz covers triple hormone therapy well, although the book is aimed at those with low-risk prostate cancer. The Prostate Cancer Research Institute site, run by Dr. Scholz, also provides excellent information about treatment options, especially for advanced patients. This information should help you understand what you are facing, and help you better talk with your doctors.

Best wishes to you all.


Old 10-07-2010, 05:40 AM   #3
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tetleytel HB User
Re: Please could someone help explain further

Hi Tom

Just to answer your question his PSA level in april last year which is what started all the investigations in the first place was 12, which we thought was bad, but it seems really low in terms of everyone else's level. Again what does this mean??

Thanks for trying to help, I will try and locate those books and have a read myself.


Old 10-07-2010, 06:06 AM   #4
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Re: Please could someone help explain further

Hi Welcome to the board.

I am also a gleason 9. I would also recommend the books Tom mentioned. I have been fairly aggressive in trying to treat my PC because of the Gleason 9, double digit PSA and my age 56 when disgnosed almost 6 years ago.

I would at least explore Triple blockade with your Dads Dr. A combination of Lupron, Casodex, and Avodart is what I am on. You will no doubt have access to generics of these drugs. Intermittent triple blockade was successful in knocking back my PSA to a lower level that single or double. Dr Myers book gives a good description. You can also view some interesting video blogs on his site.

All the best as you go through this trial


Old 10-07-2010, 06:26 AM   #5
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Re: Please could someone help explain further

Hi again,

I know that this can all be very frustrating and daunting. You've suddenly been thrown into a very confusing subject, with a lot of test results, scores and numbers. It will take a while for you to learn about prostate cancer and sort things out.

But unlike many, you do know some basic facts that make decisions easier, even if unpleasant. Your father has serious, advanced prostate cancer. It has already spread beyond the prostate to the bones. You know from the Gleason 9 score that it is aggressive. Other indicators, such as PSA doubling time and potential spread to lymph nodes and other soft tissues by the prostate may tend to confirm this. The scheduled CT scan and other tests can look for these indicia. Some of the pain your father is experiencing in the groin may be because of spread of the cancer in that area as well.

With these known disease characteristics, PSA becomes a side issue. At this point, you probably want to be looking into more systemic treatment options, such as chemotherapy combined with hormone therapy. Surgery would likely not be advised because the cancer has already spread. Radiation would only be recommended if your doctor thinks it can arrest the cancer by the prostate, but that wouldn't affect the cancer in the bones.

You ask if you should be worried. I think all of us worry about our cancer, even if it is lower risk than your father's. But metastasized prostate cancer is quite serious, and requires fast, effective action to bring under some sort of control. At this point you may not have enough information for a reliable prognosis -- and certainly anything I might say would not be of any use, as I'm just another cancer patient, not a doctor of any sort. But you want to learn quickly and find out what your father's prognosis is, and what the best treatment options would be.

I wish you the best with this unpleasant condition.


Old 10-07-2010, 09:00 AM   #6
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Re: Please could someone help explain further

Hi Tara,

I'm sorry to hear about your father's prostate cancer. You and your sisters are very anxious and want to know everything related to it, but what you should look for firstly is to consult a reliable oncologist specialized on prostate cancer.
The prognosis of your father you mentioned above (high PSA=12, high Gleason score=9, metastases in bones, etc) are very critical and that leaves me surprised for the slow reaction from your fathers doctor. You need to have it controlled the soonest.

While waiting for the CT scan it may be better to get a second opinion on your doctor’s proposed treatment as well as to gather information from other physicians.

I am also a PCa patient with ten years of survival. My Gleason was (2+3=) 5, not as aggressive as your father’s. Along these ten years I came to the conclusion that good results from treatments can only be certain if handled by proper dedicated specialists.

Wishing you the best,

Last edited by Baptista; 10-07-2010 at 09:02 AM.

Old 10-07-2010, 04:44 PM   #7
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Re: Please could someone help explain further

Hi Tara,

First, welcome to the board!

I'm glad you have already had some informative posts from some of the survivors with advanced prostate cancer, and I'm in that group too. The trio of books recommended by Tom ("Gleason9") and GUAMJOHN are superb - great for all of us patients, but especially for patients with advanced disease. These doctors really know what they are talking about based on long experience with hormonal therapy, chemotherapy, and other options for advanced patients. Unfortunately, many doctors treating prostate cancer patients are not that well informed or experienced when it comes to treating patients with advanced cancer.

Here's a key point: survival of high risk prostate cancer patients in the US is 95% at the ten year mark, provided they get good treatment. Except for a very, very few patients, prostate cancer does not kill quickly, unlike all other major cancers.

I'm glad to learn your dad is already on hormonal therapy. One typical way of delivering the key family of drugs, known as LHRH-agonists, is by a shot, every 1, 3 or 4 months, and I suspect that's what your dad is getting. It's clear that it has had the expected minimum impact, driving his PSA down from 12 to the range of 0.6 to 1.7.

However, one drug is typically not enough to do the job. The LHRH-agonists (such as Lupron or Zoladex, etc.) are designed to minimize the production of testosterone from the testes, and, if well delivered in the overwhelming majority of patients, they do that well. However, for about 10% of patients, there are drug delivery problems, oddities in the patient's individual biology such as shorter than normal time to clear the drug, or both. Therefore, the experts consider it vital that the patient be tested for both testosterone level and DHT, which is made from testosterone and is far more potent as a fuel for the cancer. It's probably okay to omit these tests if the PSA has dropped to the low hundredths, such as 0.05 or lower, but your dad's is not that low.

Also, even when patient's have experienced the desired plunge in testosterone, the adrenal glands, after being alerted to the body's shortage of testosterone, can ramp up their indirect production of testosterone. Often this is only about 5%, a concern, but not a major issue. However, in some men the adrenals can jack up the supply to around 40% of normal. Moreover, whatever testosterone is present can still be converted to far more potent DHT (dihydrotestosterone).

Therefore, the experts strongly advise using more than just one drug for most patients with challenging cases (metastatic qualifies as challenging). The drugs known as "antiandrogens" - Casodex (now generically bicalutamide) or flutamide (much less desirable - less effective and harder to manage) are the "first line" antiandrogen options for blocking the docking sites on the cancer cells so that the cancer fuel (mainly testosterone and DHT) cannot be delivered. The drug finasteride or the drug Avodart (dutasteride) go a long way toward eliminating the conversion of testosterone to DHT, and they also help in other ways, such as reducing the needed supply of blood to the cancer. This is a short course in hormonal blockade; the books provide a clear and detailed explanation.

In short, just one drug is probably not at all enough for your dad.

Regarding the side effects that you mentioned, the doctor should have gone over countermeasures to minimize them. However, many doctors are ignorant about countermeasures, and quite a number are even ignorant about the side effects. The books do an excellent job about them, especially "Invasion."

I would like to highlight just one side effect now: hormonal therapy often leads to a decrease in bone density. It's very important to get bone density measured with a bone mineral density scan. Most of us need a drug from the drug class known as "bisphosphonate." Often a milder drug from the class will do, such as Fosamax (generic alendronate now available), or Actonel, but for metastatic patients, Zometa is often the drug of choice. It's very powerful.

This is getting long so I'll mention just two more points. Lifestyle tactics - well described in the books - appear to be very important to success for us more advanced patients. They involve diet/nutrition/supplements, exercise and stress reduction.

The other point is that some patients with just a few metastatic hot spots do very well on hormonal therapy after those spots are targeted with radiation. This field of research goes by the awkward name "oligometastatic" prostate cancer.

Take care and good luck,


Old 11-08-2010, 01:29 PM   #8
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tetleytel HB User
Re: Please could someone help explain further


I know its been a long time with an update, My dad had is CT scan and our uri-onclogist has now looked at it and it says that the cancer has started to spread to the lymph nodes and he thinks its invading the rectum. We now have to wait for a bone scan to work out if the pain he is experiencing is bone pain or the tumors in the rectum?? Eitherway we will need to see the oncologist for future appointments.

They have also decided that the hormone treatment is not working as well as it did and prescribed another tablet to try help along side the hormone injections.

They have also told him to take his painkillers all the time now and hopefully that will help with managing his pain.

We are confused with regards to the bones, how can he have it in the bones but yet they dont know that its bone pain that he has??

Also the doctors said that if it has invaded the rectum then they would probably give him the option of a bag to divert from the rectum??

Is all this as bad as we think it is?? Each time we asked a questioned they said they didnt have all the information, and we have waited a long time already, they just dont seem to rush with anything.



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