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Posted 7/29/2018 4:36 PM (GMT 0)
My husband was diagnosed on July 11th - 6/12 cores were positive - 3 4+3 and 3 4+4. PSA 6.2. All the positive cores were from the left side. He had a bone scan and CT last Tuesday and we are scheduled to get the results and meet with the doc this Tuesday. We have moved a little out from the full panic state we were initially in, but the waiting for the scans has ramped things up again, and my husband is leaning a bit toward expecting really bad news (he was confident after the bx that there would be no issue and the results really slammed him). I am trying to lean positive on the scans due to his PSA level - but even I am having a tough time remaining there at times. This site has been so informative and supportive. It helps immensely to be with others who have dealt and continue to deal with this illness successfully. Not really sure why I feel the need to post right now, other than it helps to talk. We both want to move toward the treatment decision phase and are praying for no news this week that limits any options. Thanks to all here for the listening ear.
Posted 7/29/2018 5:15 PM (GMT 0)
Been there, Nytingale. That’s a tough wait for the scan results. As you recognize, it’s likely they’ll be clear, but that doesn’t spare the mind from spinning through other scenarios. Many on this website practice mindfulness as a way to stay in the moment and not get sucked into the vortex of what-ifs.
Sending best wishes and good juju to you and your husband,
—SP.
Posted 7/29/2018 5:21 PM (GMT 0)
Thanks SP - I need to explore mindfulness practice. I have generally been pretty able to control my thoughts in stressful situations (old ICU nurse), but this has rattled me a bit deeper. Patience is also not my strong suit, so this 3 week delay has been maddening. Spending a good deal of time in prayer or working to pass the time.
Posted 7/29/2018 5:31 PM (GMT 0)
nytngale, yes, waiting is tough. The good news--the best news is that he is intermediate risk, which still has 'cure' in the language. Yes, cure. Not remission, not management, cure. The next weeks/months will be tough on both of you...but you'll have him to irritate you for a good many years to come.

It's entirely likely that the scans won't show anything. You'll find out that he has an old broken bone or two, that he might have a hiatal hernia, that he might well have pre-arthritis in his hips, knees, or shoulders. Beyond that, he's going to be fine.
Posted 7/29/2018 8:54 PM (GMT 0)
Nytngale, i’m a GS9 and started out with a PSA over 12. I had scans done also. They picked up something in my pelvis. They said maybe an old injury. Had a biopsy done and c ame back negative. They tend to pick up things like that. Injuries, broken bones, arthritis, bruising to bones, etc. Don’t dwell too much on the scans. I know waiting is hard, but things will work out. Concentrate more on where you guys are going for dinner. Don’t let this get in the way of your life. It's there and has to be dealt with, but there are other things in life also that you may be missing out on.
Best of luck
Posted 7/29/2018 10:02 PM (GMT 0)
Thank you Halbert and DogDays for the reassurance. I know my husbands bone scan will show some things. He’s always been a rough and tumble farm boy - had a bad motorcycle accident in 2007 and nearly lost his right leg - now with 2 plates and 14 screws in there. He managed to tear up his shin pretty bad at work by ramming into a pipe run (works for a pipeline division of a gas company) and had it so swollen and bruised he could barely walk - the tech saw it on the scan and asked him what he did! That’s resolving now. I just pray we caught this early before it’s had a chance to migrate anywhere. I have a hard time shutting off the questioning, medical side of my mind and just make things worse for myself and want to have him around for many more years. Bless you all for the support you offer.
Posted 7/29/2018 10:31 PM (GMT 0)
Just wanted to say hi, we're all here when you need to talk.
Posted 7/29/2018 10:32 PM (GMT 0)
I'll bet you an adult beverage of your choice that it's negative. Well, as discussed it will show all sorts of wear and tear--you'll probably see the word "suspicious"--but it's quite unlikely to show mets. And I can think of a few times here when a scan was misread to show mets and the radiologist was wrong.

Good luck!
Posted 7/30/2018 12:33 AM (GMT 0)
Thanks John and Michael. We’re on for the adult beverage!
Posted 7/31/2018 8:01 PM (GMT 0)
Here’s the choice of adult beverages I owe Michael 🍾🍷🍺🍹. Scans were clean and now we move on to determining the treatment plan. Husband is still more pro-surgery than radiation. Doc doesn’t want us to take too much time deciding. He is concerned that with the G8b and relatively low PSA, that we may be dealing with an aggressive cancer (I have read some articles regarding the low PSA issue, but the higher risk group is for those with PSAs under 2.5). Nonetheless, I agree we don’t want to take overly long given that I feel we were given a “gift” of sorts in finding this when we did. Thanks to all hear for the listening ears and good advice.
Posted 7/31/2018 8:47 PM (GMT 0)
It's only 1:40 pm on the west coast, so too early for the drinks, but tonight I will toast in your direction! I remember I felt so good when I got the word my scans were clean that I was bouncing off the walls!

I think all guys tend to originally lean one way or another regarding treatment, so perfectly understandable if he's leaning toward surgery. I would say that ideally you want to avoid having both surgery AND radiation, which is somewhat more likely with a high-risk diagnosis, but it's not inevitable either. If you could, try and schedule an appointment with a radiation oncologist that can do a combo treatment of IMRT and brachytherapy, which has a good success rate in high-risk guys. (It certainly seems to have worked for me.) If you let us know where you're located we might be able to provide some guidance there.
Posted 8/1/2018 12:16 AM (GMT 0)
We're located in NW Ohio. We discussed the various options with the doc at length today. My husband prefers surgery initially since he wants all of the options available should he need them since he is at higher risk for recurrence. The doc appears to have some preference for surgery in my husband's case due to his gleason score and age, although he would not be the surgeon. I was also a little unnerved by his focus on the lower psa score and the potential indication that we could be facing an even more aggressive cancer. He also shared that he thought the radiation oncologist in town would most likely agree (a doc I have worked with in the past and whose judgment I would trust). We have a couple of friends who have gone through this same thing in the past 2 years and both have gone the robotic surgery route with a surgeon in Columbus. I have read a ton of studies and it seems that the literature doesn't offer a solid, proven direction to take either. I would like my husband to visit with an RO just to have the additional information. I know that in the long run it is his decision and he has to do what he is most comfortable with. He is aware of the side effects of both options. This is a difficult decision to make and I feel that given the situation, we don't want to delay too long.
Posted 8/1/2018 12:56 AM (GMT 0)
Nytngale, the scans being negative are a big deal in his high risk case--it means that surgery has a better chance of being curative, so that's a good step in that direction. I would still encourage you to consult at both Cleveland Clinic and Henry Ford in Detroit--likely similar distances compared to Columbus--and you're talking to world class experts in both cases.

Either way....this is a huge relief.
Posted 8/1/2018 1:04 AM (GMT 0)
no offense but I would question the competence of any RO who would recommend surgery over radiation in this case.
Posted 8/1/2018 1:18 AM (GMT 0)
Thanks for the feedback Halbert. I cannot tell you how relieved we both were getting those results. I was terrified that there would be evidence of mets. I am going to encourage my husband to do the consults. I am pleased that the surgeon that is suggested was highly recommended and is noted to be one of the top 50 in the world with the robotic procedure and his outcome stats are outstanding. He performs about 450-500 procedures per year. I just want to get to the best possibility of cure.
Posted 8/1/2018 1:34 AM (GMT 0)
Excellent news.Did you ever have the slides read by Dr Epstein?
Posted 8/1/2018 1:37 AM (GMT 0)
Thanks for the feedback F8. The RO in question is the director of a regional radiation cancer center and is well respected in his field. Perhaps the agreement would be based on my husband's age, risk status, and future considerations for treatment. I suspect that any physician we speak with at any center will have a slight proclivity for their particular field - I've worked in acute care for many years and have witnessed that many times. I respect any physician who willingly states an opinion based on the patient's needs. We are working through this the best we can. I've read the literature pretty thoroughly and it seems that there is no clear-cut advisement of superiority of one treatment approach over the other. At the end of the day, my prayer is that we make the best decision possible and the one that is the most acceptable to my husband as he is the one that needs to be the most comfortable. I do appreciate all the feedback that we've received from the experienced folks on this forum who are living examples of the success of available treatment.
Posted 8/1/2018 1:47 AM (GMT 0)
Sometimes it comes down to what you feel most comfortable doing. If the PC is confined to the prostate, you'll be hard pressed to come up with an object, science based reason to pick RT over surgery.

The thought of surgery scared the heck out of me and I didn't want it. I chose IMRT and both the RO and URO I consulted were fine with that decision.

So, you do your research and make your best choice. Likely I'd chose differently, but we're not talking about me are we ...
Andrew
Posted 8/1/2018 1:58 AM (GMT 0)
Thanks, Andrew. I wish I had a crystal ball, but I don't. In some respects it makes sense to go the radiation route as we can't really be sure this is organ contained - the scans offer a bit of reassurance at the end of the day, but we won't really know the true state till it's out. But, also with the high-risk status it makes some sense to make sure that we have follow up strategies available and any type of salvage surgical procedure is out once radiation is done. So many unknowns and at again, at the end of the day there is no clear direction. Both approaches have similar success (no large RCT proof otherwise that I can find) and we cannot predict the future. I agree, it really comes down to what my husband is comfortable with and what he wants to do. All I know is I want as many years with him as possible.
Posted 8/1/2018 2:48 AM (GMT 0)
"also with the high-risk status it makes some sense to make sure that we have follow up strategies available and any type of salvage surgical procedure is out once radiation is done"

see I just don't agree with this logic. but I do wish you the best.
Posted 8/1/2018 3:20 AM (GMT 0)
Thanks for the F8. I understand where you are coming from as well. While logic would indicate we should move to cure and not expect to need to use any salvage strategy (the point of frontline use of radiation and horomone therapies), patients such as my husband who are living in the high-risk category may not have the luxury to believe in absolute cure from any strategy. If we were living with a Gleason of 6 or 7 than the rad therapy combo would be a more likely choice. Again, if I could find solid evidence that one or other of the strategies could guarantee us cure far better than the other, then the decision would be a much easier to make. I learned a long time ago that medicine is not an absolute field and that every patient is very different and will respond to treatment differently as well. Treatment choices need to be made specific to the details of every situation. Clearly, your choice worked well for your situation and I am happy for you that you had the success that you did. I pray that my husband has a similar result no matter what therapy he ultimately chooses.
Posted 8/1/2018 3:53 AM (GMT 0)
"If we were living with a Gleason of 6 or 7 than the rad therapy combo would be a more likely choice."

for G6 it would be way overkill. never heard of any G6 receiving combination treatment. ditto for most G7s unless there was a chance of high risk like in my case (all 12 cores positive and a couple in the 60-70% range).

I hope you get to talk to a good RO. I wish you could talk to mine cool good luck.
Posted 8/1/2018 4:06 AM (GMT 0)
By all means, make the decision that is best for you, and then once you go that way, don't look back.

I'm high risk, initially G8 and then G9 after Epstein second opinion, and for me HT + IMRT + LDR brachy (commonly referred to as triple play) was my choice. The key item pushing me in that direction was the ASCENDE-RT study.

But again, the best treatment is the one you and your husband decide is best for you.

Wishing you and your husband the best in the road ahead.
Posted 8/1/2018 4:11 AM (GMT 0)
It was Taco Tuesday at our local Mexican hangout, so we toasted your husband's clean bone scan with margaritas! The good karma may have not made it to Ohio yet, but hopefully will do so soon! BTW, after I sweated my own scans, next I ended up sweating my treatment choice so I wish you luck sorting everything out.

FYI, there are some retrospective studies of different treatments on the Prostate Cancer Infolink website, including some treatments of high-risk diagnoses. Hopefully someone can post something relevant here.

And that actually reminds me of something...I saw that someone asked if you had sent your husband's biopsy slides to Epstein's lab at Johns Hopkins. If you haven't, it's something I would recommend as they're considered the best in the country at reading prostate cancer slides. (In fact, that's all they do.) In my case, I was originally a Gleason 8 and I was upgraded by their lab to a Gleason 9, which made a difference in my treatment choice. But, it could go the other way as well and your husband could have his score downgraded. And if it doesn't change at all, then at least you know exactly what you're dealing with.
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