genemyers's Message Board Messages

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A CT scan is not very sensitive. It takes one billion cancer cells before a lymph node will be enlarged enough to show up on a CT. The CT is not the best test for you. Depending on where you live, a better test is the Axumin PET scan, or a Gallium 68 psma PET scan. These can detect cancer when psa is down to .2. CT scan will not tell you what is happening in the prostate. For that you would need a multiparametric MRI. 

The CT scan shows enlarged lymph nodes. It shows the size of the lymph nodes. It does not show cancer cells present; but with a psa of 32 and a positive biopsy of the prostate, cancer in the lymph nodes is a pretty good guess at diagnosis.

The CT scan is likely correct. The Lupron has killed enough (but not all) cancer cells so that the Lymph node no longer looks abnormal on the CT scan.

Your cancer is called locally advanced. Evidence suggests that best treatment will be external beam radiation therapy (there are several types) to the prostate and to the prostate bed and some to the lymph nodes PLUS Lupron for 6 months to 2 years. It is possible (maybe likely) that this regiment will put your cancer into a durable complete remission. Radiation options include IMRT, Cyberknife, pencil beam proton therapy, plus or minus seed implants. Before you abandon the radiation recommendation, I would talk to 2-3 radiation oncologists to get second opinions.

The good news is that your cancer seems to be reasonably sensitive to Lupron.

No scan can tell you are cancer free. Practically speaking you will be in remission when you go off all drugs and treatments and your psa is low and stable and not rising.

Prostate cancer is several different diseases, based on Gleason score, psa doubling time and other clinical indicators. I know of no articles that say that for your specific disease, that surgery is the preferred way to go; but it is still an option. Most doctors in your situation will recommend RT and Lupron over surgery. If you were to get surgery, it is likely that you would need radiation after the surgery. Something to think about.

Lupron and diet by themselves will not “cure” your cancer, but they may put you in remission for 10-12 years. Evaluate the Lupron side effects and determine how much they bother you.

Sorry about you abandonment by medicine. Suffice it to say your experience is not uncommon. Continue to reach out and search for answers and become knowledgeable enough to know all of the options available that you can then bring up when you go see the doctor.





RE: RAD score

by genemyers - September 09 at 5:46 AM

Keep getting psa tests and compare one to another.  Calculate the psa doubling time and understand what it means. 

A negative biopsy result can not prove that you do not have cancer.  Only that they did not find any this time.  This is the mistake I made and I forgot about it after the first negative biopsy, but my psa kept rising.

You did not indicate why you got a biopsy; what your last psa is, or why the doctor suspected something.


by genemyers - September 09 at 5:39 AM

Prostate cancer is age driven, there is also a family history component.  IF you live long enough (like 85) you are likely to have some prostate caner. It doesnt matter how athletic you are or if you have eaten right your whole life, but this is not fully understood. Also if brothers, fathers, uncles have the disease that raises your risk.

Biopsies can have side effects like bleading for a couple of days.  It passes.  You can also get an infection in about 1% of the cases.

It would be better for your cancer control if you psa goes to less than .01, so keep watching it and see if it goes lower.

If you are getting a 6 month shot of a GNRH Agonist (Diphereline), then I would expect you to see the doctor every 6 months, not 12 months.

I think your doctor has a cavalier attitude.  Ask your doctor if you are likely to be on this drug the rest of your life.  Also ask your doctor how they are going to treat your hot flashes.  Also ask your doctor what happens if the drug stops working.

Diphereline takes your testosterone away, which accelerates some aging side effects including muscle loss and weight gain.  Your doctor should put you on a weight training program to counter some side effects.

There is a good book that talks in depth about this class of drug and how to counter all of the numerous side effects called "Androgen Deprivation Therapy; an essential guide for prostate cancer patients and their loved ones".

My first thought is that one psa reading does not tell you very much. I would get two more readings, one month apart; on March 20th  and April 20th  and look at the trend. Your one .05 might be a mistake. Do not wait 3 months for the next test.

Also you have a detectable psa after surgery so I assume your doctor has told you there is a chance that they left a small amount or normal prostate tissue behind that is creating the psa of .03.

If you do have a recurrence with a Gleason 9; the doctors are all over the board about what to do. Some will want to be aggressive with your treatment and give you radiation to the prostate bed plus the regional lymph nodes plus put you on Lupron. This is a shared decision on what to do between you and your doctor. My opinion is that you get to choose on what to do. Factoring into the decision is how extensive the cancer was from the surgery pathology report.

You might go to the Memorial Sloan Kettering web site and see what your chances of dying after RP failure by putting information into their nomogram. This might help you decide on treatment.


Your psa is to low, but if it rises to .1 or .2 I would look into getting one of the newer pet scans, the Axumin or Gallium, that will tell you where the cancer is. If you get radiation now it is radiation targeted to where they think the cancer might be; kind of a guess. Your doctor might order a bone scan and a ct scan, but these are likely to come back negative.

If you go on hormonal therapy and it fails there are good therapies available afterwards.


First figure out the psa doubling time. There are calculators on the internet that do this. If it is not doubling rapidly that would be the signal to wait. I would get the psa tested every 2-3 months to get a couple more data points.

Second, biopsy’s are generally not very painful and are well tolerated. I had two, and they were not a big deal. But that does not mean you should just run out and get one, they can have side effects.

Third, BHP can cause your psa to rise.

So I would get a couple of more psa tests over the next 4-6 months before deciding. If the psa jumps up into the 6-9 range, then a biopsy might be indicated.

Other options, (maybe now, or maybe later) are a multiparametric MRI or a genetic urine test called SelectMDx   http://www.pcmarkers.com/selectmdx-results   which will give you the probability that cancer would be found on biopsy. This is to give assurance there is nothing very aggressive going on while you get some more psa tests to identify the trend.

If you do get a biopsy, make sure you have some background information on what a positive result will do to you psychologically, so that you do not enter the state of mind that this is an emergency and you have to take radical action immediately, no matter what the cost. 


A CT scan usually do not show anything until the psa is 20-50. That is because the CT scan is insensitive and just looks at the size of the lymph node. I am not to good about reading this but it sounds like a mass in a lymph node.

My concern is that you base various treatment decisions on just one CT scan. You could wait and do the Axumim or gallium-68 scan to try to confirm what the CT is saying. The whole insurance thing is just bizzare.

You could also call the radiologist and ask them to explain the report to you and answer your questions. You could wait until Jan and get another psa test.

On the other hand if waiting or getting more scans is not going to change getting a Lupron shot, then unless you are considering other therapy, based on the psa rise alone, you might just get the shot. 

Kind of hard to know what to do without taking more time to investigate and call around and get more information.


RE: Penis swelling

by genemyers - November 22, 2018

Have never heard of this and this is not a common side effect.  After I had surgery, I had various phantom pain in various pelvic areas that came and wnet for almost a year after the surgury.  My guess is that this is your tissue healing after the radiation.  Radiation does impact the bowel.  What does your radiation oncologist say about the swelling and pain??

It is possible that if you give it a couple more months that this will self resove by itself.  If not there are various treatments you can try after talking with your radiation ocnologist.  Or you can start discussing them right now if the pain is unbearable.

Best wishes,


RE: Chronic Prostatitis

by genemyers - November 22, 2018

My guess is you have viral prostatitis, not bacterial. Viral is much harder to treat and much more common. It tends to flare up and go away. If you had bacterial, the Cirpo would have had an effect on your symptoms and the urinalysis would have come back positive.

Viral prostatitis is not going to show up in a urinalysis, a cystoscopy, a CT scan, or DRE. These tests were looking for other stuff, which they did not find. The diagnosis of prostatitis is a diagnosis by excluding the potential other stuff and that is what is left.

I guess the good news is it may go away on its own with enough time. That does not help with your current discomfort, and also it may go away and come back later for no apparent reason.

I do not have a lot of tricks or tips on what to do about this. 

If it was me, I would do two things to try to find a solution:

Keep calling other urologists and look around to find other urologist that might have an answer for you; if you think your current doctor is not getting to the issue. If you are near a well-known university hospital with a urology program that might be a good place to go. It will probably take some time and effort and be hit or miss. Like I said it is not easy to treat.

Second I would pay for a one week subscription to uptodate.com $20 (USD) and get the papers and read all of the information on prostatitis. This may give you options that the doctors are not discussing with you. Believe it or not, doctors do not know everything in their specialty and cannot possibly keep up with all of the new information that is coming out that is practice changing.

This is just how I would approach the problem.

Best wishes


RE: 3rd time around

by genemyers - November 22, 2018

I think it is important that you get another PSA reading soon at the same lab that produced the 1.4 reading. The 1.4 reading could be an outlier; it does not fit the pattern.

I know a couple of men that had surgery or radiation and are elderly and the psa came back after primary treatment but the cancer did not act very aggressive. It is almost like any surviving cancer after surgery/radiation came back in a weakened state. They were able to easily control the disease with Casodex which is very mild, but you need to understand the side effects. You can go on and off of it. Start at 50 mg per day and if that does not control it you can go to high dose casodex which is 150 mg. per day. This is called sequential androgen depravation therapy by the doctor’s.

Unfortunately you have to think about how long you expect to live. When you get your next psa reading, calculate the psa doubling time and project what age you will be, when your psa might get up to 50-100. That is the point where symptoms may start to occur. When I tell this to men in a similar situation to yours, they often come back with an answer of 130 years old. 

You did not give your original gleason score, but in any case, even with a psa of 50-100, one shot of Lupron would be highly effective, so you have a back up plan if you want to just do watchful waiting and follow the psa.

Most doctors will say to do watchful waiting with their intent being that if the psa rises to high for your comfort, to give you Lupron.

If it was me, I would watch the quarterly psa readings and agree up front with your doctor, what reading in the future to do treatment. At that point I would look at the Casodex/Avodart option. 

Best wishes


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About genemyers

Prostate Cancer
Alternative Treatments, Chemotherapy, Diagnostic Imaging, Diet, Hormone Therapy, Radiation, Side Effects, Supplements, Surgery, Cancer Treatments

RP for prostate cancer; Currently monitoring Ca status with psa tests, have undertaken diet changes and supplements to keep Ca in check. Interested in current diet and supplements that suppress cancer.

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