Happy and worried

Posted by zzotte @zzotte, 18 hours ago

So I went to see my medical oncologist yesterday, at a Center of Excellence facility with a renowned Doctor, we went over my biopsy and pet scan, so he explained to me that the spots over my shoulder, ribs, hips and back are very very small the cancer is aggressive but very slow ( kind of confusing to me ) and has been going one for at least a decade he is very reluctant in treating it, he said we can do the hormone Therapy using two kinds of meds one is a shot every 3 months and the other is 4 pills, and nothing else if psa goes to nothing we just watch for a few years and see what happens by them maybe other treatments available, from what I read the course of therapy normally prescribed is a trio, so I asked, he informed me that chemo will not work, and radiation not recommended, I request that radiation treatment be explored ( so consultation it’s on the way) so it’s generic testing which may change the course of treatment, So I’m happy about the fact that even though it’s no cure it’s controlled if hormone therapy works. Has anyone here in the same situation? Thanks
zzotte

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Without any test/scan numbers being provided (PSA, MRI results, biopsy results, biomarker test results, genetic test results, PSMA PET scan results, etc.), and not knowing details of the grade of your cancer or any other significant information, there’s no way to provide specifics. However, generally speaking…..

> “aggressive but very slow” could mean metastatic but slow to spread.
> how old are you and how many years (decades?) have you been getting PSA tests?
> why is he reluctant to treating it? What’s the issue he’s concerned about?
> doublet hormone therapy is very common (an ADT plus an ARPI)
> if PSA goes down, actively watching it is a good idea.
> there is triplet therapy available, but without knowing your specifics, there’s no way to know if it’s appropriate.
> there are other treatments already available, but again) without knowing your specifics, there’s no way to recommend.

You wouldn’t want to just stay on hormone therapy for an extended period, unless you had no other options.

You need much more information before knowing what’s next.

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Sounds like Lupron (a shot every three months) and one of the -lutamides (I take 4 Apalutamide pills every day). If my guess is correct, then the goal is to put the cancer to sleep for a while by blocking androgens like testosterone (its main trigger) at both ends:

Lupron is an ADT, which blocks your body from producing testosterone.

The -lutamides are ARSIs, which block cancer cells from receiving testosterone and other androgens (even, to a certain extent, once tumours become castrate-resistant and evolve to produce their own androgens).

It sounds like a good first strategy to my layperson's ears. If they reduce your PSA to undetectable in a few months (especially on the uPSA test), then you'll know that the cancer has gone dormant.

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So much missing information. While you do, tell us what your Gleason score is, you don’t give us any other information about yourself Or your biopsy. How old you are is a critical issue in how you are treated when you have prostate cancer,, we have no idea how old you are.

You are right it would not be a standard of care to only go with ADT and/or an ARSI, But if you are 88 years old, Then the likelihood of your cancer coming back and getting worse is pretty low and the pills or shots will take care of it for quite a long time. In your case, if they were giving you only Darolutamide And you are in your late 80s, It might be a gift to you to not give you ADT, to see if the other drug will work alone. ADT will give you many more side effects, So that could be a good choice.

If you can go on the drugs in your PSA drops to undetectable, then that may be all you need if you are in your late 80’s.

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@jeffmarc

So much missing information. While you do, tell us what your Gleason score is, you don’t give us any other information about yourself Or your biopsy. How old you are is a critical issue in how you are treated when you have prostate cancer,, we have no idea how old you are.

You are right it would not be a standard of care to only go with ADT and/or an ARSI, But if you are 88 years old, Then the likelihood of your cancer coming back and getting worse is pretty low and the pills or shots will take care of it for quite a long time. In your case, if they were giving you only Darolutamide And you are in your late 80s, It might be a gift to you to not give you ADT, to see if the other drug will work alone. ADT will give you many more side effects, So that could be a good choice.

If you can go on the drugs in your PSA drops to undetectable, then that may be all you need if you are in your late 80’s.

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Thank you for the reply, what relevant information would you like to know from the biopsy and the Pet scan? I’m 73, my PSA is 7.5 since diagnosed about a month ago
My Gleason score is 5+4 on four out of 5 and one been negative, it’s considered aggressive and metastatic it has spread to the bone area around the prostate and two lymph nodes it’s also on my left rib, left shoulder and above the liver however it’s very very small cell throughout.

Thank you
Zzotte

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@zzotte

Thank you for the reply, what relevant information would you like to know from the biopsy and the Pet scan? I’m 73, my PSA is 7.5 since diagnosed about a month ago
My Gleason score is 5+4 on four out of 5 and one been negative, it’s considered aggressive and metastatic it has spread to the bone area around the prostate and two lymph nodes it’s also on my left rib, left shoulder and above the liver however it’s very very small cell throughout.

Thank you
Zzotte

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At 73 with a Gleason nine I would want to be proactive about treating my cancer. If those spots can be seen in the pet scan, then they are probably around 3 mm in size, The smallest that can be seen on a PET scan. If there are more than five metastasis, they usually do not want to zap them (Some doctors will).

Taking both of those drugs that he’s talking about makes sense. Using those two kinds of meds should knock down the growth of that cancer and even shrink what’s there. I know a few people who are Gleason nine that have been in remission for decades. A nine is not a death sentence.

Another thing to do would be to ask about adding radium 223 in order to fight the bone metastasis.

You might want to get a second opinion. Yes, you are at a center of excellence, but different doctors don’t all agree on treatment. If you start taking those drugs, you’ll have plenty of time to find somebody else and get a different point of view. Dr. Mark Scholz in Marina del Rey California might be more aggressive. He does charge for the visit, but many people use him for a second opinion. If you look at YouTube for the PCRI conference in March, the last hour and a half has Dr’s. Scholz And Moyad Discussing what treatments should be done. It could be interesting for you to see it.

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Thank you Jeff, I’m in touch with PCRI, there is where I learned that maybe more then one treatment at the same time, however I know everyone cancer it’s a little different, I wrote to PCRI and I’m waiting for a response I love to send my test results and have them analyze, I will try to get a consultation with Dr Scholz and get his point of view I’m hoping to the see the Oncologist Radiologist soon. Thank you again
Zzotte

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