Discussions that mention zometa

Cancer: Prostate board


You may be right in your suspicion that the treatment will not be a "cure." But it may allow your husband to live a long time with a good quality of life.

If you are not comfortable with the level of information you are getting from your doctors, you might consider consulting another doctor, at least on a "second opinion" basis. (In other words, you don't have to switch doctors, but can seek a second opinion regarding the condition and treatment options from another doctor). Having said that, the discussion of percentage likelihoods rather than certainty is common. And sometimes more precise information would not change the recommended treatment. Doctors usually don't put people through additional biopsies, CT scans, etc,. unless the results would change the treatment recommendation.

When you ask about lymph node biopsy, you might also ask whether a Prostascint would be useful.

You might also ask whether a DEXA scan or QCT (Qualitative computed tomography) would be helpful, in measuring bone mineral density. This can be an issue with p ca patients and in particular people on LHRH agonists or anti-androgen treatments.

What hormone therapy did they put him on? Lupron? Did they give Cassodex as well? That is typically done, at a minimum during the beginning of the Lupron treatment.

Discuss with the doctors whether your husband should be on zometa. (If he is planing any dental work, would consider doing that before starting zometa. And if he is going to have any dental work while on zometa, make sure to mention to the dentist that he is on zometa before the work is done).

On the medical malpractice issue, don't get your advice regarding the applicable statute of limitations from a forum. There's too much misinformation on legal forums, and its a state law cause of action so the S of L will vary from state to state. Just call a reputable medical malpractice attorney in your state and they can tell you whether you are past the limitations period. But if you think it might be close, don't delay.
[QUOTE=onewife;3726891]medved thank you for your response. You are right on about the treatment. My husband has started hormone therapy and the radiation treatment will start the end of this month. We have been told that the cancer is too advanced for many of the treatments ie....radiation seed implants, surgery...etc.... My fear is that this treatment is not going to be a cure.

I have tried to ask lots of questions and felt that they didn't want to tell me everything they do know. ...

Hello onewife,

I see your cancer concerns the same way medved does (therefore I think his advice is excellent :cool:), though I'm not familiar with the legal aspects except in a very general way.

I would just like to pass on some additional information and share my experience, which I hope will be reassuring.

Of course a PSA of 56 is very high, and the biopsy underscores that your husband's case is challenging. That said, there is a real basis for hope - not much hope for a cure (at least at the state of technology as of 2008, but improvements come every year), but for long-term control. My own first-ever PSA at age 56 was 113.6, and I too had all biopsy cores positive - most 100% cancer, with a 4+3=7 Gleason and DREs revealing a prostate that was hard throughout ("Hard as a rock" per one doctor). (Of course, 113.6 is really high, but some of us have PSAs closer to a thousand or even in the thousands, and some are doing well! :)) That was nearly nine years ago, and I appear to be doing fine with nearly the same quality of life I had before diagnosis except for the side effects of my current medication (low-dose thalomid to extend my off-therapy period from intermittent triple hormonal blockade, which is an unusual approach).

Hormonal blockade and supporting drugs have been my only therapy - no surgery, radiation, etc. That appears to have worked for me, but I'm not advocating that necessarily for your husband, especially with a Gleason Score of 10 - he might need or want something more. Many doctors believe there is an advantage to "debulking" the cancer, even if they know they are not going to get it all. That's probably why your husband's doctors want to do the radiation. That makes sense, and it does give him a long shot at a cure.

I too think a fusion ProstaScint might be worthwhile. But, if your husband is going ahead with radiation anyway, I'm not sure the ProstaScint would help in managing his case. I suggest you get two books that are especially good for patients with challenging cases, and the first one, the Primer, has helpful coverage of the ProstaScint scan. The first is: "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum and Donna Pogliano; the second is: "Beating Prostate Cancer - Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers.

I had the old-style ProstaScint, and it opened the possibility of a cure (though a likelihood well under 25%) through external beam radiation. It showed, surprisingly, that there was no evident spread to lymph nodes and other soft tissues. For a patient with a case like your husband's, a decent insurance policy will cover it. I ended up paying $12 for the scan which cost about $3,400, but then a year later after an internal audit, Johns Hopkins appologized and refunded the $12. :) As medved hinted, the lymph node laporoscopic surgery just samples a small number of the more likely nodes, and a ProstaScint is far more comprehensive.

I've learned so much from Dr. Myers' Prostate Forum newsletter over the years, and the latest issue, "Unusual Cases," really got my attention because it was about types of challenging cases where patients had done surprisingly well. In other words, it reminded me of me! ;) The reason I mention it is that some of us have cancer that completely takes over the prostate but seems to have trouble going elsewhere, especially to the bones, where it normally loves to go. From what you described about your husband's scans, it's just possible that he might be one of those patients too. One set of patients he discussed have widespread lymph node involvement (not me), a very high PSA (me) (can be in the thousands), and an absence of bone mets (me). The point Dr. Myers makes is that such patients can do very well on hormonal therapy.

I want to emphatically endorse medved's suggestion of a bone mineral density scan. I have no signs of arthritis and calcification of the vascular system seems unlikely, so a DEXA scan has probably done a good job of giving me and my doctor the information we need over the past eight years. For many patients, the qCT scan is probably superior; the authors of the Primer strongly favor the qCT scan. With the aid of Fosamax, and more recently Boniva, we reversed the osteopenia I had developed after eight months of unprotected hormonal blockade, and my bones are now in the healthy range. Zometa is far more powerful. It was not available when I needed to start a bisphosphonate drug, and it might not be covered by insurance if there is no evidence of bone metastasis. I'm completely convinced that the vast majority of us on hormonal blockade will benefit from a bisphosphonate drug coupled with vitamin D3 and calcium supplementation. This illustrates a key point: while there are a number of fairly typical undesirable side effects of hormonal blockade therapy, there are countermeasures that are somewhat effective for virtually all of them. Unfortunately, many doctors are clueless about them.

Hope this has helped.

Take care,

Jim