Prostate cancer, pathology report after RPR & Lymph nodes removed.

@myboo2u

We used Walk-In-Lab and also Quest is available in CA for testing without doctor's orders. I had no idea that NY has restrictions regarding testing - how strange : ((. I really hope that you will find the way to do it 🍀. Perhaps there are some Telehealth private labs available ?

I would go nuts if somebody restricted my access to testing in general. I use those labs regularly - that way I am not at doctor's mercy for any test that I think I need.

@manutebol
Thank you..
I will look at those websites.
The first few I found are restricted in NY.
But I haven't looked at the ones you mentioned..
I appreciate the information..
Hope you have a nice day.
Melinda

Hi Melinda,
Sorry to have to welcome you to our "club". Some of us (or our husbands) have unbelievably similar histories/characteristics. I started with a DRE about a year ago, have very aggressive characteristics, had surgery last September, and will start this week with radiation and a second hormone therapy drug due to a recurrence that became evident late April.
First, give yourself a bit pat on the back because you have come to a great resource--very smart and caring, empathetic people; just reading this thread is a perfect example. We don't always agree (see below), but getting all the perspectives is very valuable.
Second, you are totally on top of what you should be doing now. Your husband is 3 weeks out from surgery, so the focus now is on healing, dealing with incontinence and regaining sexual function. Having pelvic floor therapy, doing kegels are key for now and you are doing those.
Third, you should get genomic testing (for BRAC2 and other genes) and testing of the tumor itself (Decipher and/or other tests). However, BRAC2 results really are not relevant now and won't change your short term treatment plan (and may not be relevant in the long term either), so there is no rush. My surgeon told me Decipher results wouldn't change anything he was planning to do and it was true, but I did it anyway. However, I don't think you need to rush to get this done, either if you get frequent ultra-sensitive tests. You already know your husband has aggressive characteristics, which is what you need to know for now. Same for the second opinion on the pathology. Just to be clear, I think you should do all of them, but you are feeling "shell shocked" right now and they can wait a bit--you can give yourself a breather.
Fourth, the more frequent ultra-sensitive testing is key. You want to start acting quickly IF your husband's PSA starts to rise. That raises a whole host of questions regarding imaging, timing etc (which is discussed in other threads), but you are not there yet.
Fifth, I would not start ADT yet. I chose surgery over radiation initially to avoid the ADT side effects and I had 2 great vacations that I might not have had if I was on ADT. I wanted to delay that as much as possible without risking better outcomes. I think I accomplished that, even though I had a recurrence in April, a lot earlier than I hoped for.
Finally, I got good advice early on. Live your life, don't let this disease take over, and don't look too far ahead. The men on this thread are pretty far ahead of your husband--don't forget that. You are like us--we want to be prepared and knowledgeable, but again, you don't have to be that informed about all the future steps in your possible journey. You just need to find the right balance of preparation, but not TOO much preparation and looking TOO far ahead. Also, everyone is different, so what we say might not apply to your husband at all.
Finally (really, this time), all the best to you and your husband and I apologize for talking like a lawyer (which is what I was before I retired) ::))

@myboo2u NY, NJ, RI, and VT restrict access to internet ordered lab tests. It is not clear if LabCorp OnDemand or Quest Health (the ones that actually run most labs) can sell in NY. They are typically higher cost than the third party sites.

@bikeman1
Hi..
It's nice to hear from you..
I was told that I might.🙂

I'm sorry to hear that you've had a recurrence. You seem to be on top of what you need to do.

How are you feeling?

You're right about feeling 'Shell Shocked'.

My fiance is very angry & distraught. And I'm kinda feeling the same way.

I'm trying to fight that feeling-so we can focus on key follow up appts, and address what is going on Right Now.

Since he's still healing, I can schedule future appts.

The surgeon, that is a huge part of the so called, "Care Team", is rather difficult to speak with..
Not just because he's very busy but he's kinda crude & really doesn't like to be asked questions.
Instead of a Telemed to discuss Pathology results, he sent a simple health chart message. And it didn't say much of anything. And he doesn't believe that anything but a PSA and a follow up w/his NP would be necessary.
??????
This kinda made us see RED...

I've requested additional testing & will pay out of pocket, if necessary-(upsa, genetic & genomic testing).
Prostate cancer & metastatic breast cancer run in his family.

Also, because of the lack of information & inability to have a simple discussion with the surgeon, we are trying to schedule w/the Medical Oncologist & Radiation Oncologist at the Cancer Center.
They are listed as part of the "Care Team".
Scheduling is a few months out.
I'd really like to be ahead of this.. And not miss any additional Red Flags.

We foolishly listened to the surgeon when he said that he would be the Medical Oncologist & follow-up for 10years.
Are you seeing a Medical Oncologist?

I know that if this was breast cancer, a Medical Oncologist would be instrumental in follow-up care..And a Radiation Oncologist.

Our goal is more information, consistent testing, meeting with Medical Oncologist & the Radiation Oncologist-(if needed in the future-we would like to establish a relationship with these doctors).

I'm sorry, that's ALOT of venting..

I appreciate that you reached out..
And hope you are feeling as well as possible..
Melinda

@bikeman1
Hi..
It's nice to hear from you..
I was told that I might.🙂

I'm sorry to hear that you've had a recurrence. You seem to be on top of what you need to do.

How are you feeling?

You're right about feeling 'Shell Shocked'.

My fiance is very angry & distraught. And I'm kinda feeling the same way.

I'm trying to fight that feeling-so we can focus on key follow up appts, and address what is going on Right Now.

Since he's still healing, I can schedule future appts.

The surgeon, that is a huge part of the so called, "Care Team", is rather difficult to speak with..
Not just because he's very busy but he's kinda crude & really doesn't like to be asked questions.
Instead of a Telemed to discuss Pathology results, he sent a simple health chart message. And it didn't say much of anything. And he doesn't believe that anything but a PSA and a follow up w/his NP would be necessary.
??????
This kinda made us see RED...

I've requested additional testing & will pay out of pocket, if necessary-(upsa, genetic & genomic testing).
Prostate cancer & metastatic breast cancer run in his family.

Also, because of the lack of information & inability to have a simple discussion with the surgeon, we are trying to schedule w/the Medical Oncologist & Radiation Oncologist at the Cancer Center.
They are listed as part of the "Care Team".
Scheduling is a few months out.
I'd really like to be ahead of this.. And not miss any additional Red Flags.

We foolishly listened to the surgeon when he said that he would be the Medical Oncologist & follow-up for 10years.
Are you seeing a Medical Oncologist?

I know that if this was breast cancer, a Medical Oncologist would be instrumental in follow-up care..And a Radiation Oncologist.

Our goal is more information, consistent testing, meeting with Medical Oncologist & the Radiation Oncologist-(if needed in the future-we would like to establish a relationship with these doctors).

I'm sorry, that's ALOT of venting..

I appreciate that you reached out..
And hope you are feeling as well as possible..
Melinda

@surftohealth88
Hi again,
I was wondering how you are able to get the PSA done monthly?
I'd like to do the same but every Lab that I'm aware of requires a doctor's referral even if I'm paying out of pocket.
Any suggestions?
Thank you,
Melinda

@bikeman1
Hi..
It's nice to hear from you..
I was told that I might.🙂

I'm sorry to hear that you've had a recurrence. You seem to be on top of what you need to do.

How are you feeling?

You're right about feeling 'Shell Shocked'.

My fiance is very angry & distraught. And I'm kinda feeling the same way.

I'm trying to fight that feeling-so we can focus on key follow up appts, and address what is going on Right Now.

Since he's still healing, I can schedule future appts.

The surgeon, that is a huge part of the so called, "Care Team", is rather difficult to speak with..
Not just because he's very busy but he's kinda crude & really doesn't like to be asked questions.
Instead of a Telemed to discuss Pathology results, he sent a simple health chart message. And it didn't say much of anything. And he doesn't believe that anything but a PSA and a follow up w/his NP would be necessary.
??????
This kinda made us see RED...

I've requested additional testing & will pay out of pocket, if necessary-(upsa, genetic & genomic testing).
Prostate cancer & metastatic breast cancer run in his family.

Also, because of the lack of information & inability to have a simple discussion with the surgeon, we are trying to schedule w/the Medical Oncologist & Radiation Oncologist at the Cancer Center.
They are listed as part of the "Care Team".
Scheduling is a few months out.
I'd really like to be ahead of this.. And not miss any additional Red Flags.

We foolishly listened to the surgeon when he said that he would be the Medical Oncologist & follow-up for 10years.
Are you seeing a Medical Oncologist?

I know that if this was breast cancer, a Medical Oncologist would be instrumental in follow-up care..And a Radiation Oncologist.

Our goal is more information, consistent testing, meeting with Medical Oncologist & the Radiation Oncologist-(if needed in the future-we would like to establish a relationship with these doctors).

I'm sorry, that's ALOT of venting..

I appreciate that you reached out..
And hope you are feeling as well as possible..
Melinda

@myboo2u
You have correct reasoning - one needs to establish relationship with RO and MO before problem arise.

We were actually denied access to MO just after surgery with explanation that MO works with metastatic patients only but we were insistent and we got app.

Oh yes, all appointments are always at least 6 to 8 weeks apart and that is maddening but it is like that unfortunately in most big centers. 😣 There is a "theory" that PC is slow growing and it takes time to spread and develop and yes, that is the case for most PC patients but for high risk patients it is different - it comes back without much warning and that it grows fast 😢.
My husband's uPSA started doubling every 4 weeks and only because we did tests every single month the trend was "proven" and obvious and even after that we had to wait for new PSMA scan for 6 weeks and we refused to wait. We scheduled PSMA scan in another local hospital to catch the window before uPSA reaches 0.25 . We were told that scan will not see anything at that level and guess what - couple of nodes were glowing !

They do all of those studies and than point blank ignore protocols and findings - just unbelievable *sigh. Also, if we did not have established contact with MO we would have waited for app. even longer. This way it was easier and faster since we were "his patients" already and he already knew our case and we had preliminary plan of action.

I am really sorry to hear that your urologist is so aloof and unpleasant, how disheartening : ((. Just be persistent - as many members told me here " a squeaky wheel gets all attention" and that is so true *sigh.

Thanks for asking - we are doing OK now. We finally did all scans and got all meds that I wanted for my husband (had to insist on those), and we have preliminary plan for RT that will happen mid July. Medications worked fast and well (*knock the wood) so we can relax somewhat. Hopefully you will never need anything done in the future, don't forget that that is VERY possible too ! 👍

May your fiancee heal fast and completely and be cancer free for life 💗

@surftohealth88
I’ve been working with a couple whose Husband has a Gleason 9 with small cribriform and PNI. None of these are very aggressive problems compared to you. The Wife really wants to talk to an MO At UCSF, but they’ve already turned them away once.

In your case, your husband had some real aggressive issues, Things that you really want to talk to an MO about. In their case, talking to an MO really wouldn’t make much sense, until after he gets treated and they see what happens. Speaking to an MO would not make any change in there treatment plan. They have a really good RO to work with, And he has an aggressive plan for them. I think I finally convinced her that they are not going to really need to speak to an MO yet. They have talked to an MO at another COE, but they are not happy with that person at all. I think in that case, the MO does not consider their case significant enough to manage yet.

Working with an MO can be very desirable, but may not make any change in somebody’s treatment plan, unless they have a very aggressive case to begin with. A Gleason 9 is just not enough alone. If there wasn’t such a high demand for time with an MO, maybe this would be different, But they are booked out many months in a lot of COE’s.

It is definitely a difficult situation.