HealingWell
Search Close Search
☰

Seems as if My RALP Failed

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/5/2020 11:16 PM (GMT -5)
So bad news for sure today.
So it seems my RALP failed out of the gate. I never reached undetectable. My ~3 month (around 11 weeks) PSA came back at 0.2, which is twice the 6 week PSA of 0.1. So not only did I fail my doubling time is like 5 weeks.
I sent a note to my surgeon at Fox Chase this morning asking to move my appointment up from 1/21 to something sooner.The Sloan Kettering nomogram for salvage specifically says "if you never got to 0, this nomogram is not for you". So I am not even sure what my chances of eradicating this thing are.
I am scared to death of ADT and I know its coming. I have been going to the gym to prepare for the battle but I am (very) overweight...although since surgery I have actively lost 30 pounds. On the bright side my metabolic panel looked great smile My lipids were within range for the first time in like 10 years. My cholesterol was mostly under control. I need more of the "good kind" and my sugar dropped back to around 115 (last time it was 130). So the exercise and 1500 calorie/day diet are impacting!
Do I wait another month and get to a point where a PSMA scan can pick it out so they know where to specifically aim the radiation beam? Do I start ADT and do salvage when I become fully continent? Do I push for clinical trials where there are mixes of ADT, radiation and all of the fancy ADT and chemotherapies (just way sooner) I read about here and elsewhere? In my note I indicated he should throw everything he has at it, including the kitchen sink if that helps. So he knows my mindset. I just cannot help but think this is my last chance to cure this thing.
I am definitely in a funk.
Posted 1/5/2020 11:29 PM (GMT -5)
You could wait, but ... not sure I would.

Your next step would be RT with ADT. I wouldn't think about anything beyond that for the moment as that is kitchen sink level for the moment. Your next steps won't be with the surgeon but rather with an RO. Normally you start ADT before doing RT.
Posted 1/6/2020 1:53 AM (GMT -5)
As Andrew says, it's time to see a radiation oncologist. At 0.2, even your surgeon should agree (tho he may advise a second, confirmatory PSA, per AUA guidelines). You might go ahead now and make an appointment with a Fox Chase RO, if possible for the same day you see the surgeon. Bottom line: you don't need permission from your surgeon to see an RO. It's up to you.

Don't be too scared of ADH. Sure, there are some real horror stories, but most guys tolerate a short course of it (6-12 months) fairly well and their testosterone recovers once they're off it. Like you, I was G8 pathology after surgery. Though my PSA bottomed out briefly, it soon started rising and I pulled the trigger for salvage RT at 0.1, together with 12 months' ADT. It's now more than a year and a half post SRT and one year post ADT, and my PSA's undetectable. For most men, SRT+ADT is mainly tedious, no fun at all, what with weight gain and hot flashes; but it ain't horrible either and you get through it.
Posted 1/6/2020 6:50 AM (GMT -5)
Stephen,

That stinks. So, as the others have suggested, it's time to call the RO in, and let them be in charge of your next phase. The surgeon's job is done.

Also, since you mention fox chase, I'm assuming you're in the Philadelphia area. If you'd like to talk, I'm nearby--I live up in Bucks county.
Posted 1/6/2020 7:04 AM (GMT -5)
Stephen, so sorry for the news. Yeah...get to the RO ASAP. He/she will likely want to get you going on ADT and perhaps delay the RT start until the continence is stabilized at least. Good luck.

Jim
Posted 1/6/2020 7:23 AM (GMT -5)
Congratulations on being able to lose 30 pounds after surgery. I understand your aversion to ADT; but with your new weight loss plan perhaps ADT won't cause weight gain. They will probably give you an ADT injection ASAP, and that will, I understand, stop the cancer from progressing further, which will give you time to heal further from the surgery and deal with incontinence before initiating RT. Have you found a radiation oncologist yet?
Posted 1/6/2020 7:34 AM (GMT -5)

InTheShop said...
You could wait, but ... not sure I would.
Your next step would be RT with ADT. I wouldn't think about anything beyond that for the moment as that is kitchen sink level for the moment. Your next steps won't be with the surgeon but rather with an RO. Normally you start ADT before doing RT.

Why is ADT before RT the norm? I ask because my RO had me go through RT without ADT.
Posted 1/6/2020 7:44 AM (GMT -5)
Stephen, Hi your path report and mine were almost identical except I was a Gleason 9. As far as scans i doubt at this stage of the game anything would show up at these numbers. As the guys have said it's time to say good bye to your surgeon and find the best RO that deals with PCa. Hopefully you have a great team in place with urologist,surgeon,RO, MO. In my case I was hesitant to start anything especially ADT and I was kinda having a tough time with incontinence so started ADT a little after 6 months after surgery and then a couple of months later SRT. I was at the hope lodge in Rochester,MN at the mayo so got to meet a great bunch of people who I remain friends with still today. I walked back and forth with people all day to radiation and rode my fat tire bike at least three times a week if the temp was above 0. Like they will tell you they want you to have as much bladder control as possible because where you are at when you start radiation is where you will stay and possibly get worse. I was on ADT for 2 yrs on a break right now hopefully for the next 20 years. Go back down next week to get a psa check. The side effects from ADT in my case were pretty severe and still ongoing but I am at the water park with my grandson right now celebrating his birthday and I will go out for a 6 mile snowshoe with my friends tomorrow so even tho the SE's suck I'm pretty darn thankful!!!!! So enjoy your family and friends, As I tell all the new people walk, walk some more and keep walking as much as your physically capable of walking. Wishing you the best as you continue your journey with PCa. Larry
Posted 1/6/2020 7:53 AM (GMT -5)

Largebill68 said...

Why is ADT before RT the norm? I ask because my RO had me go through RT without ADT.


Hi Bill,

There are several factors that could lead one's docs to think that some residual healthy and/or malignant tissue was left behind after RP, and that RT of the prostate fossa should be enough to complete primary treatment (e.g. pT2 with a positive margin). In other cases, factors like high or very high risk initial status, seminal vesicle invasion, a high genomics score, PSA level and trend, etc. (and, of course any pelvic lymph node invasion and its extent), make it prudent to begin ADT out of concern for metastases outside the RT field.

Your signature doesn't have your post-op G score, pT staging, or the adverse findings that prompted your RT, so I can't venture anything further.

Djin
Posted 1/6/2020 8:46 AM (GMT -5)
You are young..........you are also very high risk G8.

Hit it and hit it hard......do not wait. Your surgeon’s job is done. Why even see him again. The ball is now passed to the radiation oncologist. Definitely do ADT with your G8. You will do well. Just continue the good work you are already doing.
Posted 1/6/2020 10:12 AM (GMT -5)

Largebill68 said...

Why is ADT before RT the norm? I ask because my RO had me go through RT without ADT.

Djin gave you a good answer - not all cases need ADT. ADT is just a shot that can be done right now while the setup for RT (of any kind) can take weeks for planning, scheduling, etc. Also it's thought that ADT before RT can weaken the PC cells and make SRT more effective.

The choice to get ADT with SRT is based on your risk factor for mets and isn't done for everyone.

Andrew
Posted 1/6/2020 11:55 AM (GMT -5)
Stephen...it is WAY too soon to be jumping to conclusions, or off the cliff, for that matter.

Do find a PCa experienced RO. Fox Chase is a fine starting point.
A PSMA scan would be premature, and offer nothing at this point.
Let your surgery after effects settle down for another month.
Doubling time athis early, and at such a low level means nothing.
The latest medical studies indicate ADT is NOT always the answer.
You are probably looking at SRT, and soon, but another blood draw would help.
Keep on that diet, lose lbs, and exercise. Carrying all that weight around is your biggest issue.
For heaven's sake, don't panic. This isn't BCR, and you're not going to die of it.
We do need your path report results, your post-op G score, and your pT staging.

RELAX!
Posted 1/6/2020 12:24 PM (GMT -5)
Stephen, I would not look at it as "failed surgery," but rather that your case, like many, needs further therapy to complete your primary treatment and get all the remaining PCa. Don't worry about side effects, they may be very slight and they have to take a back seat to effective treatment now, which can help ensure you eventually die at an advanced age of something other than PCa smile

I took a quick look at your earlier posts -- but I didn't see mention of the pre-surgery imaging you had. I'm curious as to whether there was an indication in the imaging that the cancer was not prostate-confined.

Thanks,

Djin

Post Edited (DjinTonic) : 1/6/2020 10:27:48 AM (GMT-7)

Posted 1/6/2020 3:18 PM (GMT -5)
Hi there,
Sorry you're not down to zero like you wanted to be.
I too did not get down to zero after my surgery back in 2009 in Amsterdam! But the urology team were worried that that might be the case with me, as the post-op pathology showed that the cancer was in the bladder neck and had spread to the seminal vesicles. (And my Gleason was changed from 6 to 7).

I thus had to have SRT (no ADT), in 2010. (I was lucky that my urology department was across the hall from the RT department at the hospital and the people from each department that were dealing with me were working together on a research project, thus someone from urology was sitting there at the meeting of the RT team when they were planning how and where to target the beams.
And then, after the SRT I did get into the zero club. And here I am coming up to ten years on, so, while no two cases here at HW are ever the same, you might still have a good outcome.

Hope you get good advice and the right advcie from the professionals to take you through the next phase.

All the best
Alf
Posted 1/6/2020 4:52 PM (GMT -5)
To all:

First of all thanks to everyone for responding. PCa seems lonely sometimes. So for example here I am at work and casually people ask so "how are things?" and inside I am like "if you only knew.", but I just smile and say "Oh fine".

I will be working with Fox Chase on the RO. They have an entire department of radiation oncologists that are dedicated to prostate cancer, and some names that are mentioned in clinical trials as the contact person. I also was a previous customer there like 8 years ago (dedifferentiated lipsosarcoma, high grade....look that one up....talk about stress). So they saved my life once.

To answer the questions:

Garyi: I am T3b, N0, M0, Gleason 8. EPE+, SVI+, clean margins, 9 lymph nodes clean.

Djin: I didn't have any imaging immediately prior to surgery. I had a CT scan checking for the recurrence of the sarcoma seven months earlier and my surgeon said the prostate was unremarkable (to check for the sarcoma recurrence they image the entire pelvis). I am not sure if CT scans are granular enough, but I went with that. My PSA was less than 10. DRE's (all of them) were always negative.
Posted 1/6/2020 4:55 PM (GMT -5)
Stephen, do you have a signature? What is your Gleason score? Pre surgery PSA? positive margins? etc.

Never mind! Either I didn't see it, or it magically popped up on my screen as soon as I clicked "submit"!
Posted 1/6/2020 5:53 PM (GMT -5)
Simultaneous posting, I have got caught the same way since websites typically do not refresh, only the stupid ads. I now try to open a second window to the site and posting to see what the last post is right before I press the post button if I think it is fairly active.
Posted 1/6/2020 6:10 PM (GMT -5)
hey my sympathy, the RO is the right immediate call with hopefully the best imaging scan you can get, ADT is a likely add as it slow and weakens the prostate cancer cells despite the side effects, weakened cells die with less radiation
I belong to several online forums and you definitely want to make your next step the best you can you have some options in terms of ADT, scans and radiation levels
the equipment being used for radiation is also a factor with newer typically being better with less negative side effects
best wishes

scans get better all the time

https://www.youtube.com/watch?v=NkqizmvqJPo

https://youtu.be/VYrt8VUTPd8

my email is on my profile btw
Posted 1/6/2020 6:12 PM (GMT -5)
Stephen - I was recently retired so I did not visit coworkers until after my diagnosis was settled. It was incredibly difficult to tell some people that I worked with for years about my PCa. I completely overestimated my ability to rationally deal with it and shed a few tears which has not happened often in my life. It is not been a problem since the initial visit but I think cancer messes with your mind so much that it takes some time to absorb the situation and deal with it. You sound like you are in good hands and should do well.
Posted 1/6/2020 7:04 PM (GMT -5)
Stephen,
You didn't reach an undetectable PSA with either of your post surgery tests. I don't think I see good cause for waiting any length of time for another PSA test. An immediate verification test couldn't hurt.

While ADT isn't necessary for all SRT, in your case it would stop the proliferation of the cancer, giving you time, if necessary, to heal and to find a good RO and to get your SRT set up.

In your shoes, I would want to get a confirmation PSA, and then, as others have said, a Lupron injection - soon.
Good luck!
Posted 1/6/2020 7:13 PM (GMT -5)
PS Forgot to add, think it through as far as revealing your PCa to co-workers beyond those who need to know. I chose not to share that information, and in retrospect I'm glad I kept it private. But that's just me. You can let them know at any time, but you can't un-ring the bell later.
Posted 1/12/2020 1:38 PM (GMT -5)
Just a quick update....

My surgeon quickly referred me to the radiation oncologists at Fox Chase, specifically Dr Horwitz. My appointment is this Thursday.

My "follow up" PSA test was 0.11. I should point out that when I originally went to get my blood drawn at Quest, I had two independent scripts. One from my surgeon for an ultrasensitive test and one from my primary who routinely adds PSA to the other things he monitors. So the draw was at the same exact time. The 0.11 was the ultrasensitive result.

So one test was 0.2 and the other was 0.11. Obviously I *feel* better about the 0.11 (identical to the 0.1 from late November). I get the fact that in absolute terms 0.1 is not a whole lot, and they are two different tests with two different machines/methods, but in relative terms it seems huge.

Regardless they have to get in there and zap the rest of it out.
Posted 1/12/2020 1:51 PM (GMT -5)
>>Biopsy 7/2019 4 of 12 cores positive, Gleason 8 all 4 cores (80%, 90%, 5%, 25%)<<

that's a bummer Stephen but what were they expecting? I mean surgery alone could have worked but the odds were very slim. I would assume the worst and hit it hard now. good luck to you man.
Posted 1/12/2020 1:57 PM (GMT -5)
Stephen, Let us know what Dr. Horwitz says...he's an expert and HIS opinion is one that really does matter.
Posted 1/12/2020 4:34 PM (GMT -5)
Just to be blunt about it, continuing to follow a G8 with SVI+ and EPE+ after surgery with a one-decimal place PSA test is IMO akin to following up heart surgery by putting your ear against the patient's chest. Either a decision should be made about how soon adjuvant therapy should start, or, IF and only IF there is no persistent PSA after the RP, the PSA has to be monitored like a hawk with a uPSA done with the exact same test performed at the same lab.

Djin
✚ New Topic ✚ Reply
12