we have done the radation, we have been on hormone thearpy for 16 months.. there are suspious spots on the bone scan. but the dr does not want to do biopsy becaue it wouldn't chage the treatment plan. he doesn't registar a psa level so the dr can't monitor his progression very well. we wonder what the avarage time is from diagnosis with a gleason score of 8 and 16 out of 18 biopsy agressive cancer with invasion. without a psa level how will we know when he is getting in trouble again or that the hormone therapy isn't working? he said we can use hormone for up to 2 years but your body can build a resistance to it. how will we be able to tell if that happens? not knowing how your doing is hard for us.:eek:

we have done the radation, we have been on hormone thearpy for 16 months.. there are suspious spots on the bone scan. but the dr does not want to do biopsy becaue it wouldn't chage the treatment plan. he doesn't registar a psa level so the dr can't monitor his progression very well. we wonder what the avarage time is from diagnosis with a gleason score of 8 and 16 out of 18 biopsy agressive cancer with invasion. without a psa level how will we know when he is getting in trouble again or that the hormone therapy isn't working? he said we can use hormone for up to 2 years but your body can build a resistance to it. how will we be able to tell if that happens? not knowing how your doing is hard for us.:eek:


When hormone treatment is working well, the ideal situation is for PSA to drop to very low or undetectable levels and hopefully stay like that for a long time.

If the PSA increases, that indicates that the hormone treatment is not working effectively and the treatment can then be alternated or changed.

No one knows how long hormone treatment will be effective: for some men it does not work well at all, while others do well for many years.

John

Dreamhair,

From the posts that you have written, I am assuming that your partner has been diagnosed with aggressive prostate cancer, but, atypically, he does not have an elevated PSA. While about 95% of prostate cancers are adenocarcinomas, there are rare cases where the cancer takes another form. Sometimes these rare forms of prostate cancer do not result in elevated PSA. In these cases, you cannot use PSA as an indication of treatment success.

If this is the case with your situation, it will be important to find out exactly what type of cancer is involved, and then get more information on that type of cancer from experts or from printed information. If you are dealing with a rare form of prostate cancer, a second opinion from an expert in this area may help a great deal. Most of us on this board only have experience with adenocarcinoma, the PSA-indicating form of prostate cancer. Hopefully you can find someone who has experience with the specific form that you are dealing with. Try doing an internet search for experts in the specific form of cancer. More information would probably be very helpful to you right now.

we have never had a psa level. dr. said some men never produce psa. so how do we know where we are at?

my husband and i are new this forum and very curious to find answers to so many questions. he had adenocarcinoma and squamous cell (agressive) with invasion and suspious spots on his bones. we did radation40 treatments ,hormone therapy 4months at a time, then(implant) good for 1 year. no surgery, gleason score of 8. 16 out of 18 biopsy positive. nerve damage form radation fatigue hot flashes. withuot having a psa level we don't know where in the process we are. it is very scary. before radation he felt good didn't even know he had cancer. do you know anyone like you described above? thank you for your information. we have been married 21 years he is everything to me any help you can give will be greatly appreciated. bea

Dreamhair,

Sorry for the slow reply-- I've been away from computers for the last week.

With what you have described, my suggestion is to make an appointment to visit with an oncologist at a large university-based cancer center. I think your posts indicate that you are from Indiana. If, by chance, you are located near Chicago, there is a very good center at Northwestern University. If William Catalona is still working there, he is the best, but I'm sure they have someone who is familiar with non-typical prostate cancer. There may be another large center close to you. Just make sure you let the appointment person know that you are dealing with non-typical prostate cancer.

I gather that the two types of cancer you describe do not result in elevated PSA, even though they are affecting the prostate. However, there may be some other treatment options than what are offered for adenocarcinoma. Sometimes there are chemo approaches for non-typical prostate cancer. Getting some expert opinions may open up some options, or at least give you more information.

I hope things work out well,

7's

Hi..I don't know if you are still monitoring this post but if you are..I see a couple of things here. 1. You do need a psa because you are dealing with adenocarcinoma. 2. You need a second opinion. I'm sad to hear that you have already gone through radiation. You also need to KNOW if it is in the bones or any where else. All this helps you manage your lives to the best of your informed ability. Thinking 'bout you two.