Loading...

genemyers's Message Board Messages

Loading...
Showing 1 - 10 of 66

Page 1 of 7

RE: Need advice

by genemyers - December 29, 2012

In addition to the above comments I would add:

Consider getting a second and third opinion/recommendation on treatment options. At these appointments I would ask if active surveillance is appropriate.

I would call my doctor and get copies of all of the medical records so I could read them and take them to the second and third opinion.

I would consider getting a multiparametric MRI to confirm that no small amount of grade 4 or 5 was missed by the biopsy and that there is no cancer outside the prostate.

Agree with what Dan said about side effects. I would gather information on the side effects of radical treatment, surgery or radiation or otherwise.

I would also ask the doctor was the DRE positive and what is the psa doubling time.

 

Your psa is kind of high but it depends on the size of your prostate. If you have a very large prostate, with normal tissue, that can result in a psa of 3.75. Also other factors can affect the psa such as an infection or trauma to the prostate such as riding a bicycle. So I would get a repeat test in a month after you started the antibiotics and see if you get the same number. The psa is a better predictor of what is going on if you watch the trend over time, not the absolute value at any one point in time. I would get the psa every couple of months to see if it is increasing or just stable at 3.75. That will tell you what, if anything needs to be done about the prostate.

Blood in the urine is more likely a problem with the bladder (assuming you have not had a prostate biopsy). Rarely does blood indicate a prostate problem.

In the United States the Urologist would likely want to do a cystoscopy. I had this done on me. They put a scope up your urethra and look around and try to determine what is causing the blood. It could be a lot of things.

So in a couple of weeks after you have taken all of the antibiotics, and if your symptoms do not disappear, I would go back to the doctor and have a cystoscopy done or have the doctor explain what he is going to do for you, because at that point “live normally, no precautions” is not going to be an acceptable answer.

I do not know of any eating or drinking precautions you need to take at this time since you do not have a diagnosis.

Gene

I would agree with Dan that in the US, this might be treated differently, so you need to see if you can get US medical type treatment in rural India.

In the US you might be talking to a urologist about surgery, a radiation oncologist about radiation, and a medical oncologist or urologist about hormone therapy.

It is generally assumed in the US that there is no one right way to treat this disease. So if possible, you would seek out different doctors with different disciplines that would treat the disease differently, and the patient would make a decision on what treatment to get.

Also many men in the US use diet and supplements to treat the disease or as an adjunct to any mainstream medicine.

In your father’s case, how the disease is treated by mainstream medicine would depend on a couple of other pieces of information that would give further clues as to the extent of disease and the aggressiveness of the disease. 

1.      What percent of the cancer is grade 4 vs. grade 3?

2.      What is his psa and what is his psa doubling time?

3.      What is the cause of the swollen lymph nodes?

4.      What is the cause of the back and thigh pain?

Also a bone scan is relatively insensitive and for bones doctors are starting to use the NaF Pet Scan as a more sensitive bone scan.

Dan is right in that hormone therapy is not a cure. It is also very hard for some men to deal with the side effects.

If your father ends up on hormone therapy, some doctors in the US will do the LHRH agonist monthly like you are doing, they would add bicalutamide continuously not just for 10 days, and they might add a 5 alpha reductase inhibitor, so your father would be on 3 drugs, not one. 

If you father ends up on hormone therapy, also talk to your doctor about intermittent hormonal therapy.

This is probably a lot and do not wish to overwhelm you, but your best bet might be to find a doctor that is willing to work with you to come up with the best options.

 

Gene

It looks like you have had a psa recurrence after radiation. Diet and supplements can be given a try. Your doctors will likely recommend that you go on some form of hormonal therapy. If they talk about this have a comprehensive discussion about the side effects.

If they give you a standard bone scan or a standard CT scan they are looking for bone or lymph node metastasis and it is not likely to show anything as these tests are not sensitive enough with a psa of 12.3.

If they do a biopsy and it comes back positive they may offer you surgery. Most places do not want to do surgery after radiation as it is a much more difficult operation, although some centers will do it. Be very careful about this option. 

If you can, consider getting a new scanning technique just approved by the FDA in September at the Mayo Clinic in Rochester, Minnesota using the Carbon 11 Choline PET/CT fusion scan for recurrent disease.   If they find the exact location of the cancer, they are using surgery or spot radiation to the lymph nodes or bones for some dramatic results. 

You can see a brief video of the technique presented by Dr. Eugene Kwon here:

http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-pet

 

Gleason (3+5) would be an unusual presentation. I sent my biopsy slides to Epstein for a second opinion. He is an expert in prostate cancer pathology. Slides are sent to Epstein so it should not be a problem to ship them. Call Epstein’s office and they can direct you as to how to arrange for the shipment of the slides. 

Not knowing what is available in China, If you can arrange it I would have your parents come visit you for a week or so and arrange appointments ahead of time while they are here. It would be good to get treatment recommendations in China before coming here. 

You are lucky in that UCSF has a well known prostate cancer department, so I would arrange for appointments there. I would try to get whatever medical records you can from China ahead of time, and arrange with UCSF to do any other tests and doctor evaluations all in one visit, including talking to a medical oncologist and a radiation oncologist.

I would try to get an appointment with Eric Small, Peter Carroll, and/or Mack Roach at UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco. 


With the small amount of information you have given, to get the best outcome you need to see a medical oncologist and a radiation oncologist. Standard of care in the US is all over the board, but I would say surgery is less likely, and many places will just put your father on hormonal therapy.

You will have to evaluate whether the quality of care in Beijing would be equivalent to the US. It might be. If you get US doctors you can also ask for referrals to doctors in Beijing. You (or your family) are going to have to decide if the US or China is a better place for treatment for your father, given all of the factors.

I know less about treatment cost except that it can be expensive and radiation can cost $40,000-$60,000 US and surgery and hormonal shots are less costly but still expensive. If you get US doctors, I would ask the nurse or patient advocate for help paying for treatment and they may have some programs you can get referred to for help. The expense of treatment in the US vs. China may be a big factor in deciding where to have treatment.

Best to you.

 

Gene

After surgery your first psa test should be undetectable using an ultra sensitive psa assay. This is usually reported to the patient as “less than .01” or “less than .02”. If the post surgery psa is really 1.0, it probably indicates that there is some prostate tissue left after the surgery. With your positive surgery margins, the guess is that some cancer is left in the prostate bed, or in the lymph nodes that are left in the pelvis.

With a psa of 6.0 or a psa of 1.0, a CT scan is not sensitive enough to detect anything. A CT scan in this setting, does not tell you anything. The fact that the lymph nodes removed at surgery are clear is good, and points to the tissue being left that is creating the 1.0 psa as likely located in the prostate bed (in the radiation field). 

I would not say the psa is “high”. That is not really the question. The question is whether the psa is detectable or undetectable. The important thing now is to keep getting the psa after the radiation ends, and hopefully watch it slowly decline to undetectable. Once the psa gets to its lowest point, you need to keep watching it to make sure that it does not start to increase.

Gene

I would say choose the surgeon first, and the hospital would be almost a non consideration, as long as the surgeon felt good about the hospital. Studies show the more volume by the surgeon, the better the outcomes for robotic surgery. If the surgery goes well, the recovery in the hospital is somewhat routine. However, I would make sure your doctor has told you that your heart problems are not a concern in terms of going through the surgery and the recovery. 

Dan makes several good point including that Gleason 8’s might have a recurrence after surgery, and if you have surgery you might just be back in a couple of months for your second treatment. It would help to know what the biopsy results were, how many cores were positive, what percentage were positive.

As far as local vs. distant, you would want to plan on going to the distant location and staying for at least a few days or a week before you come home. Even though you might be walking around after the surgery, nobody feels like taking a long trip, without some recovery time.

Also if you travel some distance, you will want to set up in advance a local doctor that can care for you after the surgery so you can get local care for things that might come up or to take the catheter out. Also for long distance, understand what follow up visits your doctor requires, if any, that will require you to travel back to the surgery location.

Part of the answer depends on how long you plan to be on Lupron therapy and if you currently have osteoperosis or osteopenia.  The longer you will be on Lupron, or if you already have bone loss, the more you need something for the bone.

Lupron therapy accelerates bone loss, which Zometa is designed to build bones. 

I would talk to your doctor about the alternative to Zometa:  Xgeva which it the first agent to have been shown to delay the onset of bone metastases  in  men with androgen-independent prostate cancer.

I am not aware of common Zometa side effects except a very small percentage of patients get ONJ (osteonecrosis of the jaw); and for that reason it is advised to get a complete oral exam and all needed dental work done before  you start on any injected bisphosphonate.

Gene

IMRT is better than 3D conformal where there is a prostate they are radiating. Also there are several newer modalities than IMRT.

However, where there is no prostate I would defer to your doctors on this. If your doctor believes it is better to have IMRT you and/or your doctor can argue with the insurance company about this by calling them, providing them with medical papers to support your position, and appealing their decision. No guarantees but you may be able to get their minds changed. 

It also might depend if they are radiating just the prostate bed or the whole pelvis (they might do either). If they are doing the whole pelvis, it might not matter that much since they may not need the advantages of IMRT which is to conform to the outline of the prostate while avoiding the rectum, bladder, etc. Realize this is probably blind radiation where they are making an educated guess on where the cancer is.

Based on your previous posts I am guessing your husband’s psa must be detectable and rising after surgery.

Personally I do not know anybody who gets 3D conformal radiation anymore; it is basically from the early 90’s with IMRT largely replacing it. 

Best wishes

 

Gene

 

Gemzar is not indicated for prostate cancer. Did you mean pancreatic cancer?

Peripheral Neuropathy is a somewhat common side effect of chemotherapy.  This should be reported to your doctors to try to minumize it, as it can limit treatment if it gets to bad.

Showing 1 - 10 of 66

Page 1 of 7

Loading...

About genemyers

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

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.

We care about your feedback. Let us know how we can improve your CancerCompass experience.