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

@myboo2u
The first thing first - HUGSSS and you are doing great dear Melinda !!! 💗

Your partner has a great support and all the love of this world and I have no doubt that you will find the way to get him the best care and newest treatments IF he ever needs them in the future.

Every case is different and we here have members with bad pathology, positive margins and all other bad stuff and they end up with very long remissions anyways, and also there are cases with favorable and contained PC and fast BCR etc. - one just never knows !

I wish that I can reassure you that "big centers" are "all that" but they are not - you will have to be on top of his care no matter where you go. It is just that big centers have available all that is needed for more complicated cases and if you ask for Prostox and Decipher you will get that but still you will have to ask *sigh. At least that was the case for us. Our center also tended to downplay aggressiveness of my husband's PC BUT I knew better and coordinated his case accordingly. They ordered uPSA every 3 mos but I ordered it every month in a walk in lab on my own and it proved to be very good choice. His first uPSA was more than promising (0.014) but wouldn't you know it - it started rising couple of months later and than started rising rapidly ! One just needs to be vigilant with PC.

You got this dear Melinda ! Just concentrate now on his recovery and take one step at the time. I personally would not spend time asking for second opinion about pathology since he obviously has aggressive features and each of them shows that on it's own (inclooding bladder neck involvement), and besides Decipher will tell it all. I would concentrate on recovery and on finding more vigilant doctor in a center that specializes in urogenital cancers.

Sending best wishes and healing vibes ✨

@heavyphil
Hi Phil,
Thank you for the advice.
I'm currently setting up appts with the Medical & Radiation Oncologist at the Prostate Cancer Center here.
I'm also trying to meet with another Medical oncologist at a higher rated prostate cancer center.

The surgeon really surprised us today, by saying that all is fine and nothing will change with the treatment due to pathology.
This was a health chart message.
And didn't think that we needed to meet with the Medical & Radiation Oncologist right now.
Maybe I'm crazy...

WOW...

It's so true that surgeons strictly cut.
And to busy for a 15min Telemed to discuss the pathology report.

I'm angry but going to do everything I can to get the proper care for my fiance.

Wishing you well & thank you for reaching out.
Melinda

@surftohealth88
Thank you very much..

I'm on a mission to get the right care..
I need to stay calm & focused.
The cancer center has a
specialized medical oncologist & radiation oncologist.
I'm hoping they will meet with us soon.
And I will beg if needed..
I've asked for a Decipher & Genetic testing-(due to family history).
This will be a cash transaction because they won't put it through insurance. Which is fine because it needs to be done ASAP.

Now maybe my fiance can get the uPSA.
That's on the list.

Thank you for being so positive. And helping me understand what is truly important.

I wish you & your husband well...
Please let me know how things are going, if you are able.

Sending love,
Melinda

@myboo2u

I forgot to ask - did your urologist prescribe small does of Cialis as part of rehabilitation protocol for erectile dysfunction prevention as well as a penile pump.

Also, your fiancee needs to start Kegel exercise soon and possibly even pelvic floor physical therapy to speed up continence recovery.

Some men are fully continent and have no ED upon catheter removal, but in case that there is any problem please know that there are methods and protocols that help achieving full recovery in both areas.

Don't worry 💗- I am here almost every day. I was here even while my husband was doing great. I received amazing help from other members here when I needed it and I know how important that is for new PC patients.

@surftohealth88
Hi..
Yes, my fiance received a script for daily Cialis and started kegels prior to surgery & continues to do them 3xday or more if able.
The NP recommended Pelvic floor PT at 6-7weeks post surgery. He's going to start that soon. They will also help with any ED issues. They NP did discuss the pump with us.
Interesting that we felt like the conversations after surgery focused on the penis pump and not the healing process-like lymph fluid squirting out of incisions, severe swelling, gas, bowels, etc..
But we did our research on what to expect while healing, the first 3 months.
Luckily the 6 incisions are healing and no longer leaking..
The Pelvic floor PT helps with ALOT of issues and addresses sexual function, incontinence, bowel issues & more.
I'm sure there's so much we don't know yet..
And will only find out when it happens.
I did learn that Peyronie's disease can occur after RPR.
Another bit of information we found by research and confirmed with the NP at the surgeons office..
I'm really glad this group is so helpful and well educated.
I appreciate your support & will probably be asking ALOT of questions in the months to come..❤️

Thank you,
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

@myboo2u

If you are located in most places the U.S., you can get all the PSA and uPSA tests you want by ordering them on your own from directlabs.com or requestatest.com.

@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

@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.

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) ::))