1. < Prostate Cancer

What should I do next?

Posted by newtothegroup @newtothegroup, Dec 27, 2024

Currently, I have been diagnosed with mastasic prostate cancer. I have been going for check ups every three months so I'm just confused on how I got here. About three years ago, I was hospitalized due to an inflamed prostate. After that, I was put on antibiotics and my PSA went down to a 8. My PSA was a 90 PSA three months ago and doctor said that they would adjust my antibiotics. Three months later I show up and my psa is 300 now, doctor ordered the biopsy and cancer was found 12 of 12 samples with Gleason score of 9 on all. Also my scan showing all spread to lymph nodes. Currently the doctor sent me home saying that they would start me on orgovyx in a two weeks and then apply for a clinical trial which could take three months to get started.
I am super worried to be sitting here with no treatment and just want to start something.

Does my story sound familiar to anyone else? I just don't know how it got this far with checkups every three months. Doctor said after I'm put on the hormone pill that he will see me again in three months to see how it's working. Is that the normal frequency?

Help please....

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

newtothegroup | @newtothegroup | 3 days ago
In reply to @heavyphil "Hey bud, you sound like you are really getting it all together. Now that you have..." + (show)
@heavyphil

Hey bud, you sound like you are really getting it all together. Now that you have a focus on what you have, your decision making can become a lot easier.
One question, however….is your “current urologist doctor” the one who put you on finasteride for three years and never did a biopsy with your high PSA levels?
If that is the case you have one more job and that is finding a doctor - urologist, RO or medical oncologist to monitor you from here on in. Do you still have any trust in your doctor’s judgement after finding yourself in this situation? From what you’ve told us he seems out of step with current accepted medical practices.
You owe him nothing - especially loyalty at this point. His feelings do not matter in the equation.

Jump to this post

Yes. It's the same guy. I didn't realize that it may be good to get radiation oncologist and medical oncologist. I was thinking it was the same type of doctor. Right now, I only have the two appointments with t
medical oncologists. I haven't set up others yet and sounds like maybe I should start looking into a few others. Is there someone that overseas it all that would be good to talk with overall that can look at this and help me decide? I worry about that too. Also, I worry about waiting a few months like you mentioned before I can even start treatment. Currently my current treatment is adt and waiting for a clinical which I don't even know if I qualify for yet.

So on the list is: get a appointment with an urologist (different one than today) and radiation oncologist. Thoughts?

REPLY
1 reply
jeffmarc | @jeffmarc | 3 days ago
In reply to @newtothegroup "Yes. It's the same guy. I didn't realize that it may be good to get radiation..." + (show)
@newtothegroup

Yes. It's the same guy. I didn't realize that it may be good to get radiation oncologist and medical oncologist. I was thinking it was the same type of doctor. Right now, I only have the two appointments with t
medical oncologists. I haven't set up others yet and sounds like maybe I should start looking into a few others. Is there someone that overseas it all that would be good to talk with overall that can look at this and help me decide? I worry about that too. Also, I worry about waiting a few months like you mentioned before I can even start treatment. Currently my current treatment is adt and waiting for a clinical which I don't even know if I qualify for yet.

So on the list is: get a appointment with an urologist (different one than today) and radiation oncologist. Thoughts?

Jump to this post

You’re being on ADT can save you from your cancer growing anymore for a while. That actually will shrink it in most cases.

If you can find a center of excellence, they will have all three types of doctors you need to talk to, And they will all want to talk to you. Yes, you need a new urologist and definitely need to speak to a radiation oncologist. Get as much information as you can.

I can’t see any reason why you would want to do a clinical trial right now. If you end up on the placebo side, it could just aggravate your cancer. There are known treatments that work, When you have no other options, then a clinical trial is worth trying.

REPLY
newtothegroup | @newtothegroup | 3 days ago

Before I retired, I worked for the county helping with road maintenance. During bad storms and weather, I went out to close roads and put detours up to keep people safe and out of low water crossings. I showed up and did my job and it kept people safe and avoided unnecessary injuries and death. It was not a fancy job but I did it with pride and care as people depended on me doing my job.

Sorry for the story but it is difficult for me to understand how someone might not show up to do their job when lives depend on it.

I still got lot of reading to do and some of the links that sent are great resources. I'm thankful for this group as you guys are really helping people like me. I didn't even know where to start like three days ago. Now I have an appointment with a center of excellence and got a room via the American cancer society set up for next week. It sounds like I need to do more and I will look into more appointments this week. Thanks all.

REPLY
1 reply
heavyphil | @heavyphil | 2 days ago
In reply to @newtothegroup "Before I retired, I worked for the county helping with road maintenance. During bad storms and..." + (show)
@newtothegroup

Before I retired, I worked for the county helping with road maintenance. During bad storms and weather, I went out to close roads and put detours up to keep people safe and out of low water crossings. I showed up and did my job and it kept people safe and avoided unnecessary injuries and death. It was not a fancy job but I did it with pride and care as people depended on me doing my job.

Sorry for the story but it is difficult for me to understand how someone might not show up to do their job when lives depend on it.

I still got lot of reading to do and some of the links that sent are great resources. I'm thankful for this group as you guys are really helping people like me. I didn't even know where to start like three days ago. Now I have an appointment with a center of excellence and got a room via the American cancer society set up for next week. It sounds like I need to do more and I will look into more appointments this week. Thanks all.

Jump to this post

You are doing Great, buddy! To get all this done in such a short period of time after getting sucker punched is just phenomenal!
Since you have a room and an appointment ((MD Anderson?) there’s nothing more you need to do right now. As jeffmarc and others have said, you are on ADT so that right there is the BEST medicine right now.
The hospital consultant - (whatever his particular area of expertise is not super important right now) - will review all your numbers, tests and scans and advise you on your next steps. Remember that you have disease that has spread to the lymph nodes, so you are going to need a multi-disciplinary approach - maybe surgery ( can’t be totally ruled out just yet), probably radiation, continued ADT and maybe even chemo depending on your genetic factors.
It may seem overwhelming but rest assured, this is how it’s done. It’s VERY different from your last doctor ( PLEASE GET THE HELL AWAY FROM HIM!) diddling around, doing nothing while your cancer spread.
You will be asked what hospitals or doctors should have access to your records. Leave him OUT as he has NO right to access your treatment, nor would I give him any opportunity to influence your thinking in any way.
You are spot on when you say that he did not show up for work; your relationship with him should be terminated at this point and just focus on getting the proper treatment. You are gonna get thru this, buddy, just remember that. Many before you have had much worse and are still kicking ass decades later!
Happy New Year and please keep us posted on your progress…
Phil

REPLY
1 reply
newtothegroup | @newtothegroup | 2 days ago
In reply to @heavyphil "You are doing Great, buddy! To get all this done in such a short period of..." + (show)
@heavyphil

You are doing Great, buddy! To get all this done in such a short period of time after getting sucker punched is just phenomenal!
Since you have a room and an appointment ((MD Anderson?) there’s nothing more you need to do right now. As jeffmarc and others have said, you are on ADT so that right there is the BEST medicine right now.
The hospital consultant - (whatever his particular area of expertise is not super important right now) - will review all your numbers, tests and scans and advise you on your next steps. Remember that you have disease that has spread to the lymph nodes, so you are going to need a multi-disciplinary approach - maybe surgery ( can’t be totally ruled out just yet), probably radiation, continued ADT and maybe even chemo depending on your genetic factors.
It may seem overwhelming but rest assured, this is how it’s done. It’s VERY different from your last doctor ( PLEASE GET THE HELL AWAY FROM HIM!) diddling around, doing nothing while your cancer spread.
You will be asked what hospitals or doctors should have access to your records. Leave him OUT as he has NO right to access your treatment, nor would I give him any opportunity to influence your thinking in any way.
You are spot on when you say that he did not show up for work; your relationship with him should be terminated at this point and just focus on getting the proper treatment. You are gonna get thru this, buddy, just remember that. Many before you have had much worse and are still kicking ass decades later!
Happy New Year and please keep us posted on your progress…
Phil

Jump to this post

Thanks and happy new year too. I will post back once I get through my appointment next week with MD Anderson geni oncologist. Thanks.

REPLY
View MoreView Less
Please sign in or register to post a reply.