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Staging and RO Recommendation

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Posted 4/14/2021 11:41 AM (GMT -5)
Just got off the consult with the RO. We talked about different options but they are recommending the following:

Start Lupron immediately and stay on Lupron for 2 years. (I know, no fun).
26 courses of Hypofractionated radiation (EBRT) starting 2 months after.

The RO said in his opinion that I am not a candidate for SBRT or Brachy.

My high risk factors are, of course, the Gleason score of G8, and invasion into a seminal vesicle. My staging is T3B. My last PSA on 2/3/21 was 3.53.

The RO said that he would lean more towards this course of treatment, rather than surgery, because of the seminal vessel invasion, and the difficulty of 'getting it all' because of this complication. I am concerned, however, with the long term effects of Lupron because I do have coronary artery disease. My coronary artery disease is 'diffuse' and I have no blockages or narrowing that require angioplasty or stents at this point. The RO also said that there was a slight risk of dementia with the lengthy hormone therapy.

I will talk to the surgeon tomorrow and see how confident he is on his ability to at least have a chance of getting it all in light of the seminal vessel invasion. After that I will make a decision.

My sig is not updated, but the above info above is what you need to know.

Any opinions or advice would be welcomed.

Best,
GeetarMan Mic
Posted 4/14/2021 12:09 PM (GMT -5)
Seminal vesicle invasion is a tricky adverse finding, since the seminal vesicles are usually entirely removed in a RP. So one one hand, a finding of SVI post-op does increase the statistical risk of BCR as well as clinical recurrence, but, on the other hand, it does not rule out that a RP has successfully treated one's PCa defintively.

One advantage of surgery for some high-risk PCa men is that a decision on subsequent therapy can wait to see if it is needed. This can range all the way from adjuvant RT with ADT, to adjuvant RT only, to salvage RT (with or without ADT) anytime in the future, all the way to no further treatment ever being necessary after surgery. Some of the determinative factors are: persistent vs. undetectable PSA after surgery, the definitive G score, the number and extent of any adverse findings, and the post-op PSA trend. Three very recent studies are pointing to the non-superiority of adjuvant over salvage therapy, so more men may be able to avoid the unnecessary toxicities of overtreatment.

Djin
Posted 4/14/2021 12:40 PM (GMT -5)
the thing about surgery is secondary treatment often isn't initiated soon enough to be effective. with a kitchen sink approach there is no denial, delays or time-wasting tests.

with your numbers i would assume that surgery will not get it all no matter what the surgeons says.
Posted 4/14/2021 3:18 PM (GMT -5)
With the G8 and SVI finding, you're in a strong likelyhood (not guaranteed, but on the high end of likely) of needing future radiation and/or hormone therapy anyway--so why do surgery at all. A call to your cardiologist about the 2 years of Lupron might be in order to get his opinion. An RO is not a heart specialist, so he's less well versed in the details of your type of issues.
Posted 4/14/2021 4:20 PM (GMT -5)

halbert said...
With the G8 and SVI finding, you're in a strong likelyhood (not guaranteed, but on the high end of likely) of needing future radiation and/or hormone therapy anyway--so why do surgery at all. A call to your cardiologist about the 2 years of Lupron might be in order to get his opinion. An RO is not a heart specialist, so he's less well versed in the details of your type of issues.

Halbert - Thanks and I totally get that. Good suggestion to contact my cardiologist, thanks! I will send him a message right now. I am just trying to wrap my head around 2 years of Lupron, and the side effects of that even beyond. Feels like my quality of life is going to take a huge hit and it's depressing. Not to mention the side effects of the radiation itself. I'll have to get over that and put on my big-boy pants and fight this thing.
Posted 4/14/2021 4:36 PM (GMT -5)
Geetarman, I'm not gonna lie, ADT wasnt fun. But it wasnt terrible. I didnt start exercising until i had already gained weight and grew a stomach, so dont do what i did, be active from the beginning. Everyone is different, but for many, its not much more than a nuisance, and it will end. Try to stay positive about it.
Posted 4/14/2021 6:12 PM (GMT -5)
Geeterman, this can be a tough call and I don't blame you for wanting to avoid ADT. (Although as Prat said, it is doable, it's just a slog.) I think the question is: are you going to need ADT anyway after surgery? That's obviously unanswerable and you'll just have to make a call on how you feel about that and not second guess yourself.

Regarding radiation, there's a lot of debate on how long ADT needs to be. I had 18 months, but some guys have had 36 months and others have had 12 months. It would be good to know how your RO landed on 24 months--it's reasonable, but as I said there's a lot of variation.

Did your RO say why you weren't a good candidate for SBRT or brachy? Not all ROs offer those treatments--if your RO doesn't, you might want to get an opinion from an RO that does as they'll be more familiar with them. (Unless, you choose not to go with radiation.) FWIW, I had the brachy/IMRT combo, which is a fairly common option for high-risk guys.
Posted 4/14/2021 9:34 PM (GMT -5)
I know the anxiety of wanting to make a decision and get on with it is quite strong but you still have time to get another RO opinion on treatment options if you want. However, I do not see a scenario where a radiation option would not include some period of ADT which seems to always be part of the high risk treatment protocols. You can always try to negotiate the duration down or the agent used with the RO based on your coronary issues.

Surgery usually does not require ADT but there is always the risk that you may need it later in conjunction with secondary radiation treatment. Tough choices to be made, no doubt. Keep asking questions until you are satisfied.
Posted 4/15/2021 6:37 AM (GMT -5)
You need more than just beam and ADT, Either do Brachy, beam, and ADT or surgery, adjuvant radiation and ADT.

I suspect the RO you consulted doesn’t do Brachy.

I dreaded the idea of ADT, but I am finishing 24 months June 1. Get a personal trainer 2x a week and hot flashes can be managed

Post Edited (Duck2) : 4/15/2021 5:41:48 AM (GMT-6)

Posted 4/15/2021 7:18 AM (GMT -5)
First time around, right after RARP I got 2 & 1/2 years of leuprolide chemo. 3 months after surgery I got 40 radiation treatments to prostate bed and surround. Side effects from those were not fun. 8 years later, I just finished another 30 hits of salvage radiation to my pelvic lymph nodes and spot treatment of 3 metastatic pelvic lymph nodes. I am also 16 months into another round of leuprolide + enzalutamide chemo. Uro and MO said they wanted me to stay on that chemical regimen until it failed, RO said 24 months then done. The whole point of getting more radiation was to try and kill the cancer and to get off the chems again, which I will do next Jan. Another vacation from chemo if nothing else and I am prepared to play radiation whack-a-mole with any more mets that show up to further kick the can down the road.

My take on this is that there is physiologic and psychological value in "de-bulking" the primary tumor. That is where the cancer started and where it is most developed. If nothing else that slows its progress and gives the satisfaction of knowing that most - if not all - of it has been removed and discarded. The leuprolide and radiation further slow it down if they don't kill it off outright.

While the side effects have not been pleasant, they have not been intolerable and there is a lot to be said in favor of being alive to complain about them. smile
Posted 4/15/2021 8:54 AM (GMT -5)

trailguy said...
While the side effects have not been pleasant, they have not been intolerable and there is a lot to be said in favor of being alive to complain about them. smile

Amen to that!
Posted 4/15/2021 11:23 AM (GMT -5)
I have made a decision to go with surgery as my first run at this beast. Looks like I can get in to do this on May 15th. I have had extensive conversations with the RO and the Surgeon and all options have been discussed, Brachy, EBRT, SBRT, ADT, surgery, and different flavors of all of the above. The doctors at the University of Minnesota Fairview (M Health) are very well versed in all of these options, and all of these options are offered by this group.

I know that some will say 'with my numbers' they would make a different choice, and I understand that. They may even be right, but only time will tell. I know there is a very high likelihood that I will need radiation and hormone therapy in the future, I go into this eyes wide open.

So all I ask is that if you feel I have made the wrong decision, to keep it to yourself because all I need right now is support!

Thank you all for weighing in. Everybody's story is different and I respect each and everyone's opinion. Every comment has been truly helpful to me.

I just feel relief right now that I have made the decision.

Best,
Geetarman Mic
Posted 4/15/2021 11:33 AM (GMT -5)
Congrats on reaching a treatment decision! Your low PSA speaks well in favor of your cancer being local with a good chance of total removal. Now you can relax: let your surgical team work for you -- they are experts and you are in good hands. Think positive -- we are all with you too!

Read up on what to have at home and what to do and not do on your days following surgery. There's lots of information here smile

Djin
Posted 4/15/2021 12:41 PM (GMT -5)
G-Man,

Congrats on making a decision that works for you. From now till May 15, eat healthy, (ice cream is GFMPH btw), get your walking and other exercise in, and have as much loving as you can handle. Get your preps done (make sure your recliner is comfy and your remote has fresh batteries), and report back from the other side!

You'll make it through, and the next steps...whatever they end up being...will be clear.
Posted 4/15/2021 2:57 PM (GMT -5)
Congrats on making a decision. I felt such relief when I did--I finally felt like instead of wondering what was next, I was not focused on playing offense and beating this thing. Lots of guys here that can help you through the process. Good luck and keep us posted!
Posted 4/15/2021 3:43 PM (GMT -5)
An informed decision is the best kind. Wishing you a speedy recovery. Keep us posted. Terry
Posted 4/15/2021 3:50 PM (GMT -5)
good luck man! i know i felt much better after i made my decision.
Posted 4/15/2021 4:30 PM (GMT -5)
Thanks everyone! It truly is a relief to make that decision and be able to look forward. I know some of you reading this would have made a different choice, and some of you would have made the same choice. I considered many many factors, and asked the ROs and my surgeon every last question I could think of with my wife by my side. My wife agrees with this and it was also her opinion that surgery is the right choice for me.

Hopefully I can grab that May 15th slot and get this part behind me.
Posted 4/15/2021 4:31 PM (GMT -5)
The weight has been removed, full speed ahead...
Posted 4/15/2021 5:19 PM (GMT -5)
Testing out my new signature.

I will tell my (not really) AS story soon as I think it might be helpful for others that start off with a low-risk G6 diagnosis. It will be a cautionary tale. I was also kind of knocked out of the surveillance rhythm because of the darn COVID lockdown and I'll touch on that as well.
Posted 4/23/2021 3:55 AM (GMT -5)
GeetarMan

Congrats on your decision. I had an RRP and have never regretted it. I’ve also been on Lupron or Firmagon for 8 years and while I can’t say l don’t notice it, it’s something you can get used to. That’s probably a misleading way of saying you can learn to cope with the hot flashes and other side effects. With an end point scheduled, it shouldn’t be bad at all.
I had a heart attack when I was 36 and had 3 stents placed. That will soon be 18 years ago in May. My heart issues taught me how to live a more balanced life - everything in moderation. Even exercise. And alcohol. And fishing or golfing. Even guitar playing - that’s a tough one for me. I have a tough time putting it away once I get started with it. My newest guilty pleasure - a J45 Deluxe. Just loving that one maybe more than my Taylor... But I try to give them equal time - moderation. I draw and paint too. Sometimes until the sun comes up. That’s not moderation but I know then I need to rebalance.😎

Good luck with your surgery!

Gunner
Posted 4/23/2021 6:16 AM (GMT -5)
Go get ‘em! Start looking for a good recliner if you dont have one (they are rentable).
Posted 4/23/2021 11:30 PM (GMT -5)
Geetar, good luck with the surgery! I had mine 3 months ago. Would like to share some lessons learned from my own experience, some of which was great advice from others. Like you, I had my wife involved in my doctor appointments and valued her opinion on my surgery choice. Your doctor/hospital will give you A lot of information for your rehab at home. Involve your wife in that too! A LOT of do's and don'ts, including food/drinks. The more she knows the better she can help you. As others have said, a good recliner is a must. I lived in mine while catheter was in for 9 days. I had a small plastic garbage can on the side to hold the drain bag. You're going to be drinking A LOT of fluids to keep your bladder flushed. I bought a generous supply of single serve drink mixes (Crystal lite) for a standard bottle of water. No way I could drink that much plain water. Prune juice, though horrible, proved to be medicinal for constipation. I bought a pair of "breakaway" or "tearaway" pants like basketball players wear. Snaps on both sides top to bottom for easy on/off and catheter hose just goes out the side between snaps. about $30 on the internet a pair, I highly recommend these. Start pelvic floor exercises (Kegel) now. Don't wait after surgery to start them. I did them for 3 months before surgery and believe it's a factor I never had incontinence other than a few drops for 3-4 days. Walk as soon and often as your body allows. It helps with constipation and removing the gas they put in your body for surgery. I did laps every hour around the kitchen island. I didn't use the Cath leg bag, just carried around the big one and didn't leave the house. When I went to get the Cath out I concealed it in a reusable grocery bag. I imagine I fooled no one! I'm sure others will offer other tips. Good luck with the surgery!
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