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Cancer: Prostate Message Board

Cancer: Prostate Board Index

[B][U]The Hard :( AND Also The Realistically Hopeful :cool: Realities With A Challenging Case of Prostate Cancer (Especially with Very High PSA)[/U][/B]

Hi again,

[B]Choosing whether to go quietly or to fight[/B] – either can be appropriate
This is a time for deep thinking and prayer by you and your husband. While your supporters here and elsewhere can assist you, the key, highly personal decisions are your husband’s and yours alone to make. Don’t let the doctor make them for you. The main prospects before you - your choices, are (1) accepting what looks like, based on a first glance impression to be a likely terminal situation based just on that high PSA and your husband’s weakness with weight loss, with the goal of reducing pain and holding on to as much quality of life as possible during the decline, and (2), on the other hand, working to try to defeat the cancer and hopefully recover at least somewhat, with perhaps a fair shot at turning this into a chronic but not deadly situation (my goal for about a decade before a cure looked possible), with a long-shot at a cure; this choice could include an initial attempt to defeat the cancer and a later shift to choice 1. It helps to become informed about what is involved in each choice, including options that are realistically open or closed to you and their odds of success, unfortunately including options that might require prohibitively large out-of-pocket costs where insurance might not cover the expense. The bottom line is that you both really need to know the odds of success in your specific situation. After all, if the odds of success were zero, there wouldn’t be any point in pursuing choice 2. I can at least assure you that, based on what you have provided so far, the odds look a great deal more favorable than zero.

[B]Your Husband’s Case[/B]
Can you give us any more detail, which matters in interpreting the situation? You have said that his PSA was 267.5, his Gleason score is 5+4=9 (which is quite aggressive), extensive cancer in the samples, and that he is 78, was weak, with weight loss and lack of appetite. Can you give us his any imaging results, past PSAs with dates, and whether he has other serious disease or a challenging medical history?

[B]What a PSA of 267.5 Means[/B]
Your husband’s PSA is so high that doctors will strongly suspect the disease has already spread widely beyond the prostate. However, they can be wrong. They thought the same for me because my PSA was so high at 113.6; as it has turned out, it seems that, though my prostate was jam packed with cancer, there were no tumors elsewhere that were large enough to be detected (with one, small “suspicious” spot in an unlikely location). I know about a few other patients where the doctors were similarly wrong in their initial assessments. That said, the weakness, etc. points more directly to a likelihood of metastases.

[B]Some Patients Do Well Despite Extremely High PSAs and Metastases[/B] :cool:
When I got my first PSA test, I thought that 10 was the maximum score, and I was in for a very fast and rough education that PSA could be much higher. The highest I’ve ever heard of after following prostate cancer developments closely for 18 years was 25,000 in 2011. The patient was in very bad shape at that point – quite amazing that he was still even alive, but, with the aid of artful therapy, he recovered after hormonal therapy, chemo, Zytiga®, and two surgeries, and in the fall of 2016 he had no evidence of disease and was off all therapies!!!!! A well-known medical oncologist who specializes in prostate cancer wrote a book about using hormonal therapy and diet to beat prostate cancer, and in that book he gave several case histories of patients with high PSAs and metastatic cancer who had done unusually well. The first had a PSA of 1,026 ng/ml; after quite a battle with the disease his PSA dropped to 0.04 ng/ml and had remained there. Patient 2 had a PSA of 3,488 ng/ml, found with routine blood tests, and a week later it had risen to 3,905, a rapid PSA doubling time; his PSA fell to less than 0.01 within 10 weeks of starting treatment. (It took me about 2 ˝ years to get mine that low, but I did it eventually!) The third patient had a PSA of 3,656, found after his growing cancer had blocked his kidneys from emptying into the bladder; he got his PSA as low as 0.33 ng/ml, but was unwilling to do some treatments because of choices involving his quality of life. Moreover, the book was first published a dozen years ago, and there have been numerous important advances in treatment since then.

[B]On the Other Hand, Many Men Do Not Live With PSAs in the Low Thousands, and Lower
[/B]Unfortunately, more than two thirds of patients diagnosed with distant metastases do not survive at the five year point according to historical data. :( Recently there have been small improvements in survival for these patients. I suspect that due to the recent slew of new drugs and better treatments/imaging, there will soon be substantial gains for these patients showing up in the survival data. :cool: It is worth keeping in mind that technology will surely advance a lot more over the next five years; it may be worthwhile to “hold the fort” until the cavalry arrives in the form of new technology. (For instance, check out lutetium 177 for prostate cancer.) Here’s another optimistic note for this downer paragraph: the same doctor who wrote that book has stated, based on his large practice with many challenging cases, that men with very high PSAs tend to respond very well to treatment; the thinking is that this is because such cancers depend heavily on testosterone and dihydrotestosterone for fuel, so well-established methods for cutting off the fuel really set the cancers back.

[B]What Kind of PET scan?
[/B]There are a number of different kinds out there, often combined with a CT scan. One I had just for bones was the highly sensitive Na F18 PET/CT scan. One surging in popularity is the Axumin scan; it’s good for both soft tissue and bones. An emerging scan, not yet approved but available on an “investigational” basis is a gallium based PSMA scan. Would you mind sharing the results? Depending on the results, certain treatments/drugs will be ruled in or ruled out. For example, if a patient has only bone metastases and no “soft tissue” metastases, then the drug Xofigo is probably a good choice, but not if there are also soft tissue metastases. Also, if there are just a few metastases, then early chemo would likely not be helpful; but if there is a heavier metastatic pattern, then early chemo along with hormonal therapy is likely going to help (the CHAARTED clinical trial and subsequent analyses).

[B]Supportive Medications
[/B]There are three inexpensive medications that appear quite helpful in supporting treatment. One is any of the statin drugs that are anti-cholesterol medications. A second is metformin, an anti-diabetes drug that also has shown usefulness against several cancers, including prostate cancer, and gradually increasing the dose will determine what dose can be easily tolerated. The third is aspirin, which I wrote about under the recent thread on prevention.

[B]Countermeasures for Side Effects
[/B]Unfortunately many doctors do a poor job of counseling their patients on countermeasures for the side effects of the drugs they prescribe. Has you husbands doctor talked to you both about countermeasures? There are some good books that can help here. Countermeasures are really important, but even more so for an older patient like your husband. Eligard should do a great job in the short term, but long-term use could put him in a nursing home. This is a balancing act, and it pays to have an expert doctor to guide you.

[B]Supportive Diet, Nutrition, Exercise
[/B]Right now more food and calories looks like an important objective. But if your husband is able to recover his appetite, then avoiding excessive calories is important. Also, some diets seem to help us, especially the vegan diet or Mediterranean diet. On the other hand, the standard Western diet seems to support the cancer. If possible a bit later, exercise – both aerobic and strength/resistance – is important.

[B]Combined Treatment, with Attacking Cancer in the Prostate as the Foundation
[/B]Some doctors with great experience with prostate cancer are convinced that challenging cases need the cancer in the prostate to be eliminated, even if there are metastases elsewhere. I am convinced this is true. For your husband, this would mean radiation in combination with hormonal therapy, and perhaps also chemo, but I suspect not at the same time as the radiation. A contrary view is that it does no real good to treat cancer in the prostate if the cancer is already metastatic. Monitoring both testosterone and dihydrotestosterone is important; if either are too high, then adjustments can be made.

[B]Genetic Testing
[/B]Genetic testing is being increasingly used for patients with challenging cases. You could ask your husband’s doctor about it.

I know this is a lot to digest. I hope it helps.

Good luck!

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