My husband was diagnosed last Thursday with prostate cancer. He is a Gleason 7 (4+3) with a PSA of over 50 (doctor's test didn't go over 50).
The urologist said there wasn't any point to treatment other than hormones and gave him an implant of Lupron. My husband is 73 and in excellent health otherwise.
We took previous advice and bought books and have read one completely so far. We also had slides sent off to Johns Hopkins but haven't heard results yet.
We saw a local oncologist in Idaho Falls this morning who basically repeated what the urologist said. That it has probably micrometaticised and hormone therapy is our only option. Despite the fact that his bone scan and CT and lung scans came out without any signs of cancer (the mass was something else). They said that three years would be the mean survival for someone in my husbands condition. Will someone please tell me there is better news than that.
My questions are:
We want to go to Johns Hopkins for a consultation but the receptionist told us you had to be local for the multidisciplanary clinic. This doesn't make total sense because I hear of so many others going there. I have a call into the clinic manager but she hasn't returned it and will be off on Fri. (according to the answering machine message). Any suggestions of how to get in. Anyone know if you really have to be local to get in? The only thing they offered us was an appointment with a radiation therapist but we want to have his whole case evaluated and tell us our best options.
I believe they are not offering us options because of my husbands age but truly I believe he is healthy enough that he should have many years left. He is still working and very active and has no symptoms of this thing.
My big concern right now is after he got it, I read that the Lupron will cause a surge of testosterone for the first week or two before he shuts down production. Won't a shot of testosterone possibly feed the cancer and make it grow? Rather than taking drugs both of us want him to the the surgery to remove his testicles. I have asked them to make an appointment for this ASAP but they seem to be in no hurry to get us an appointment. We both think he should have the surgery and get that implant removed before that testosterone surge does something bad. Does anybody have an opinion?
Why isn't surgery to remove prostate an option for him? They keep saying that the odds are it won't be successful and the risks aren't worth it. But I can't see that the risks of these drugs are any less.
We are game for radiation or radiation and castration but just hormone therapy or castration alone don't seem to be enough. There is so much talk about prostate treatments being so advanced but why aren't we being offered anything?
On the other hand if we can be seen at that clinic in Johns Hopkins or somewhere else is it overkill to have the castration immediately. Both of us are prepared for impotence and likely incontinence. We want the best shot and him living at least ten years and hopefully more without horrible debilitating cancer pain.
We have a daugter in Phoenix. She is an RN. Would it make sense to go there and just ask an experienced surgeon to remove the prostate? She knows one who does 4/week. It doesn't make sense to me that he wouldn't live longer even if the cancer does return. If it returned in 8 years then at least we would have had that time and it would be better than sitting around waiting for the hormone therapy to fail.
I am surprised for the refusal at Johns Hopkins. I would insists with them and demand for talking with a superior. I am not at US but I was attended at JH even when calling from overseas.
For a second opinion on the biopsy and advice on treatment try calling; Dr. Epstein’s Sec.,Roger King (410) 614-6330 (who will give you all the info you need to sending slides to Dr. Epstein). Other phone is (410) 955-2405. Johns Hopkins Medical Laboratories are located at Baltimore, MD 21205.
You can then inquire about a referral to visit a doctor.
I do not know the real status of your husband but it is common to not operate in old patients if the intent is not for cure. However, according to the data you share (high PSA at the 50th, Gs7, negative image studies and asymptomatic and in good health) your husband got all the treatment options open to him.
All treatments for prostate cancer got risks and cause side effects which he should be aware before deciding. Treatments also do not assure cure and none is better than the other. Decisions involve many aspects including the quality of life one would risk. No one wants to be cured but handicapped.
In any case, hormonal treatment is a viable solution for caring hormone dependent cancers, providing control on any advance for long periods of time, over 10 years in many cases. After the first line of HT one can change drugs to a second line or get into the newer drugs, therefore still extending the period on the treatment during long periods. Once the cancer becomes hormone refractory (independent) HT patients start chemo therapy.
The effect of Lupron is similar to orchiectomy (castration). The side effects are due to the low levels of testosterone in the body which would occur in either choice; Chemical with Lupron or surgery to remove the testes. Once the effectiveness of the drug is over (Lupron), the testosterone returns to normal levels where with orchiectomy it doesn’t (it is permanent).
Regarding the initial surge in PSA due to Lupron injection, it is called “flare”, but this condition it is not harmful if your husband is asymptomatic. Flare is not good in patients with advanced bone metastases because it may be harmful and cause pain. You should discuss on details with his oncologist. He also could get informed on more aggressive protocols adding other drugs to care better for any advancement of the cancer. Typically risky patients get double or triple blockade adding an antiandrogen drug similar to Casodex and/or a 5=ARI drug similar to Avodart.
Radiation or surgery is two viable treatments that can provide cure. However, they involve risks to the quality of life. Incontinence and erection dysfunction are typical. Bladder, urethra and bowel cystitis are risks from radiation treatments. Patients with ulcerative colitis are not recommended to this type of therapy.
I would recommend your husband to get second opinions on any treatment from unbiased specialists on prostate care not from local doctors. Things go better at the hands of proper teams and facilities. Proper diagnosis will also lead to better decision. I recommend him to get any test done now.
I believe that your husband will do well whichever treatment he chooses, if he is assisted by competent physicians.
Wishing you both peace of mind.
Last edited by Baptista; 03-02-2012 at 03:58 AM.
Reason: add JH info
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Your husband should have been given Casodex two weeks prior to Lupron to prevent flair. You should be seeing a prostate oncologist at this time and not a urologist. Your doctor was very pessimestic. The median duration of Hormone therapy is 11 years when administered by a good prostate oncologist which means that half the patients continue to respond after 11 years. Since there are no dectable masses his chances are very good for long term control as long as you get the right doctor.
The Following User Says Thank You to Johnt1 For This Useful Post: jackie607 (03-02-2012)
Yes, taking bicalutamide (Casodex) even now will help. It is an anti-androgen that blocks the prostate cancer cells from receiving the testosterone. The Lupron first causes a large surge in testosterone. When the pituitary gland in the brain detects such high levels of testosterone, it sends a message to the testes to stop any further testosterone production. It may take a few weeks for all testosterone to be stopped. So it paradoxically eliminates testosterone by first causing it to increase. There is a newer drug, Degarelix that shuts it off directly without an initial increase. This is known as "chemical castration,' and accomplishes the same thing as physical castration. In the meanwhile, you can prevent the testosterone that's already in his system from getting into the cancer cells by using Casodex. Testosterone is also converted in the prostate into another hormone called DHT which is 10 times more potent at stimulating the cancer cells. DHT can be prevented from forming with Avodart or Proscar. These three drugs, Lupron, Casodex and Avodart should do a good job at getting his testosterone very low and his PSA levels should drop accordingly, indicating that the cancer is being held in check. When the cancer in check with hormones, you can begin to contemplate next steps.
The reason that surgically removing the prostate will not help at this point is because the cancer has almost certainly gone beyond the prostate. When the PSA goes that high, the cancer is probably not confined to the prostate. It may be in the prostate bed, in the lymph, in the blood or in the bones. The tumor mass has to be quite large for it to show up in bone scans and most PET scans. There is a test for circulating tumor cells (CTCs) that can check for the presence in the blood. There are some new tests, like the C11 Choline PET scan available at the Mayo Clinic in Rochester, MN or the feraheme MRI available at Dattoli Clinic/Sand Lake Imaging in Florida that can find even smaller caches of tumor cells. There are other kinds of PET scans like NaF18 or F18 Choline that are not as sensitive or specific, but are more widely available. If they are able to find that it is only in five or fewer sites outside the prostate (lymph or bone) but still in the local pelvic area, they can then use radiation to destroy those caches and the cancer in the prostate and prostate bed too.
I think Dr. Scholz in CA or Dr. Myers in VA can provide a lot of options for you. If you are looking for a multidisciplinary center, the ones that come to mind for prostate cancer are Memorial Sloan Kettering in NY, UCLA, UCSF, MD Anderson in Houston, the Cleveland Clinic, and the Mayo Clinic. Johns Hopkins is primarily known for prostate surgery, although I'm sure they have many fine oncologists too.
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You have already received excellent responses to your posts, and I hope they have eased your mind. As the flare is already underway, you and your husband can take some time to consider whether to have the orchiectomy surgery. As Allen said, Casodex - available in generic bicalutamide - now will help control the cancer, and it will also curtail the flare, though that should not be a problem as Baptista noted.
About Johns Hopkins - It's an excellent place for a second review of the biopsy specimen. It may also now be a satisfactory place for advice and initial management of hormonal therapy, but that has not always been the case. In fact, the most famous surgeon, Dr. Patrick Walsh, has long been opposed to what many of us would consider to be timely and effective hormonal therapy. If you have his book and look up DHT (dihydrotestosterone), you can see that he has a divided opinion about its importance, sometimes stating that it is much more important than testosterone as a fuel for prostate cancer (the overwhelming view of the oncologic medical community), but sometimes treating it as insignificant. Johns Hopkins is outstanding in so many respects, but you should be aware that Dr. Walsh's influence may have affected approaches of doctors there to hormonal therapy.
Dr. Mark Scholz, who you mentioned, is a recognized expert in hormonal therapy. He is the medical co-author of a book that covers aspects of hormonal therapy, and he has been the lead author of papers about hormonal therapy published in leading medical research journals. He is very well known in the prostate cancer survivor community nationally and especially in the Southern California area.
Dr. Scholz may suggest switching to a two drug blockade, bicalutamide and Avodart, rather than including Lupron, based on your husband's age. He feels that many older patients get roughly 80% of the benefits of triple blockade but just 20% of the side effects from such combined blockade. However, in view of the challenging aspects of your husband's case, he may judge that full blockade would be best.
I too was given a short prognosis of five years - three good years and two declining - when I was diagnosed in December with prostate cancer (GS 4+3=7 per Dr. Epstein at Johns Hopkins; all cores positive; PSA 113.6; stage 3) by doctors at Johns Hopkins and the City of Hope. However, that December was in 1999, more than a dozen years ago. I am now 68 and doing fine during my third extended vacation period from the heavier duty drugs (Lupron, bicalutamide) of triple blockade while maintaining primarily with finasteride or Avodart during the vacations. I have a scan scheduled that Allen mentioned - the Feraheme USPIO MRI scan in Florida, and the highly accurate Na 18F PET bone scan showed no bone mets this last December. If the Feraheme scan is favorable, I may take a shot at a cure with expertly delivered radiation. My program has been guided in part by approaches developed by Dr. Scholz and like-minded colleagues.
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I too am surprised at John Hopkins' response. I would definetly seek another opinion. I am 63. Had Gleason 7 (3+4) detected after up trending PSA. I opted for robotic surgery and am 1 month post surgery and am doing great!! The group I went to has a surgery group and radiation group as well as other treatment options. They went over all my options and took a second look at the slides to make sure of the diagnosis.
They have performed over 5000 robotic surgeries. My doc-- over 1800. Their quality of life results are much better than generally reported.
Last edited by Administrator; 03-08-2012 at 05:38 PM.
The Following User Says Thank You to I Got What For This Useful Post: jackie607 (03-08-2012)
Thanks. Johns Hopkins didn't give us advice on the cancer. But they said you have to live in the Baltimore/DC area to attend their multidisciplanary clinic. They offered us a phone consult but we already have one scheduled with Dr. Scholtz on April 6th.
Thanks Jim. It encouraging to know how well you are doing. I wish I could get my husband to get on these boards. He is talking to someone at work who went through this. Today he was talking with me a little more freely about it. Maybe I'll get him on this board yet.
Do they really say you have a shot at a cure after twelve years of hormone therapy? That is wonderful. I've read Dr. Walsh's book but I have to admit I need to go through it again. When you read under stress it doesn't all soak in.
Jackie-- Sorry I had posted the website of the group I used but I guess that is a no-no. I used Dr. Edward Bugg with Urology Centers of Alabama, loctaed in Birmingham, Alabama. Everyone has mentioned doctors and facilities on here so I hope this is ok. After all, we are all trying to help each other get through a rough time.
One of the keys to recovery is a caring partner and your husband certainly has that!
Best of luck. Let me know if I can give you any more info.
The Following User Says Thank You to I Got What For This Useful Post: jackie607 (03-09-2012)