New here newly diagnosed trying to de... - Advanced Prostate...

Advanced Prostate Cancer

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New here newly diagnosed trying to decide treatment

hydro24 profile image
36 Replies

Diagnosed within last 30 days 65 years old

Gleason 7 + 8 PSA 3.9

8 cores gleason 7 (4+3)

4 cores gleason 8 (4+4)

80-100% all cores

recent bone scan and CT scan showing negative spread

original MRI done before biopsy

last 30 days given 20 tabs Bicalutimide and 3 month shot of Lupron

RO suggests Brachyboost-RT-Hormone

Uro suggests RP-RT-Hormone (no nerve sparing more then likely)

I have Afib for last 7-8 years treated with Eliquis and metoprolol no real symptoms there

Both RO or URO won't make my mind up for me (what a surprise) lol

However when I reminded the Uro last visit about my Afib he did sort of lean towards maybe the Brachy boost.

RO has supplied me, and I have researched on this site and others (thanks Tall Allen) with links saying both outcomes similar.

Neither RO or Uro are really pushing one way or the other very tough to decide. Thanks all

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hydro24 profile image
hydro24
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36 Replies
Fairwind profile image
Fairwind

You are a high-risk Gleason 8. I went through this same journey 10 years ago. I did surgery which failed, then RT and HT..I'm still hanging on but if I had to do it again, I would skip the surgery and do the RT + brachy + HT for a couple of years. The results are better and you skip the major surgery and it's risks..Make sure your RO is using up to date equipment and has done more than a few brachy procedures..

hydro24 profile image
hydro24 in reply to Fairwind

Thanks for your response

GP24 profile image
GP24

If you can avoid taking Eliquis for some time you could have surgery. Then you would not need a long term hormone therapy as you would with radiation.

hydro24 profile image
hydro24 in reply to GP24

Thank you for taking the time

Break60 profile image
Break60 in reply to GP24

Why do you say that? RP is far from 100% successful. See my profile.

Bob

GP24 profile image
GP24 in reply to GP24

Bob,

my main objective was to point out that surgery could be performed. I did not want to recommend surgery instead of radiation, hydro24 may decide what he prefers.

He wrote: „bone scan and CT scan showing negative spread“, so nothing was detected. He also did not mention whether the MRI detected extracapsular extension. So I did hope that the tumor would be still in the prostate only. Surgery plus extended lymph node dissection would be a valid option I think.

But I would not do that with my Uro in the neighborhood. I would have that done in an excellent hospital which promises a nerve sparing surgery.

The Uro mentioned radiation and hormone therapy (36 months?) after the surgery. I think, as it looks now, this could be overtreatment.

hydro24 profile image
hydro24 in reply to GP24

Thanks fellas appreciate all thoughts.

MJCA profile image
MJCA

Hi. An RO will push brachytherapy and/or radiation. You may wish to consult a Medical Oncologist to obtain another opinion.

hydro24 profile image
hydro24 in reply to MJCA

Thank you for weighing in.

Tall_Allen profile image
Tall_Allen

I hope I didn't say that both outcomes are similar - that's just what Tilki said. Kishan found a very different outcome. In terms of toxicity, RP+RT is probably worse - I never think it's a good idea to go into surgery planning to have radiation on top of it - why not do it right the first time? What I wrote was:

"We see that the two studies are really not comparable in some respects. The Kishan study was much larger, and was done among many of the top institutions. The Hamburg patients had a much higher percent of positive lymph nodes, and their mortality was twice as high as in the Kishan study. The Chicago patients only got half as much ADT vs. the Kishan study. Importantly, the Kishan study found that RP+EBRT had PCSM that was twice as high as BBT, while the Tilki study showed no statistically significant difference."

"Another important aspect was not reported in either study - the toxicity of treatment. We know that surgery plus radiation has worse urinary and sexual side effects compared to surgery alone.BBT carries risk of higher late-term urinary side effects compared to EBRT alone."

"Until we have a randomized clinical trial of BBT vs MaxRP, we will never have certainty, but for now, the Kishan study better reflects expected outcomes of these therapies at top institutions."

pcnrv.blogspot.com/2018/11/...

hydro24 profile image
hydro24 in reply to Tall_Allen

Thanks for your response. My understanding is that both Dr.s would do radiation and hormone therapy in addition to their treatments RP or Brachy. I'm not sure if you personally said the results were similar (I am overwhelmed with info at this point.) I think I was commenting more on your informative (although somewhat complicated for layman links more then anything) Maybe I am misreading this information that you can even really compare the two? I seem to be getting that idea from the Dr.s and articles that I have read that the outcomes would be similar. Possibly the Brachyboost-RT-Hormone may even have less side effects initially at least. Am I misunderstanding? Anything you can do to "dummy" it down to a laypersons level would be appreciated. Once again thanks for your time!

Tall_Allen profile image
Tall_Allen in reply to hydro24

All of the abbreviations are defined in the article. I can extract the bottom line for you: "the Kishan study found that RP+EBRT (prostatectomy plus radiation) had PCSM (prostate cancer death rate) that was twice as high as BBT (brachy boost therapy)...the Kishan study better reflects expected outcomes of these therapies at top institutions." That is, you are much more likely to die if you have prostatectomy plus radiation than if you have external beam radiation and a brachytherapy boost.

Please let me know what you find confusing.

hydro24 profile image
hydro24 in reply to Tall_Allen

Thanks Tall. That's what I hoped I thought I was getting. After I did a bit more research on the acronyms etc. Like I said to Fairwind just a tad overwhelmed at this point trying to absorb everything and stay afloat. I'm not expecting any one to say "here is the one and only path for you my son!" Just trying to methodically sort all of this out in a timely fashion and plow forward and not look back with too many regrets. I thank you all for taking the time it is greatly appreciated.

Break60 profile image
Break60 in reply to Tall_Allen

Totally agree! Six years after RP I’m having incontinence issues again and of course total ED ever since RP.

hydro24 profile image
hydro24 in reply to Break60

Thx

hydro24 profile image
hydro24 in reply to Tall_Allen

Curious if you think there might other options then the two I am currently looking at/or being offered? Thx

Tall_Allen profile image
Tall_Allen in reply to hydro24

Brachy boost is clearly has the best and longest track record. As for surgery...The dose you would get to the prostate bed with salvage radiation after RP is probably inadequate. There is another alternative, but it is only available in clinical trials for now - Dr King at UCLA is doing a trial of SBRT (monotherapy) for high risk PC - results so far (2 years) are excellent - low toxicity, no failures.

hydro24 profile image
hydro24 in reply to Tall_Allen

Thanks Tall I’ve come to the Brachy conclusion in my mind I just have to get it all set up at this point. I’m in The Orlando area they have Moffit center in Tampa which is drivable but none of the trials they are doing look to apply. Thanks again for taking the time!

moffitt.org/clinicaltrialss...

Tall_Allen profile image
Tall_Allen in reply to hydro24

John Sylvester in Bradenton is one of the top experts in LDR brachytherapy. Baggioli in Orlando does HDR brachytherapy.

hydro24 profile image
hydro24 in reply to Tall_Allen

I was referred to Baggioli but couldn’t get in at the time so I met with Dr. K Saigal in the same facility he said they all discussed my case last Thursday at their “Thursday tumor meeting” I guess lol. Asked my uro who referred me to Baggioli if he thought I should meet with Baggioli instead he didn’t seem to think it would make a difference. This is where this stuff gets confusing to me. Should I insist on getting it done by Baggioli? Saigal seems very competent as well. Thx

Tall_Allen profile image
Tall_Allen in reply to hydro24

It depends on his experience- How many has he done in high risk patients? Here are questions to ask for HDR brachy monotherapy - the questions are mostly the same for brachy boost therapy (except Q1 and 2a):

pcnrv.blogspot.com/2017/12/...

hydro24 profile image
hydro24 in reply to Tall_Allen

Got it thx again.

Fairwind profile image
Fairwind

This is tough...Every patient is different. Every patient responds a little differently to treatment.. There are no fixed rules, no certainties..When you compare groups of 100-200 men, you start seeing trends that point in certain directions but in that group there will be exceptions that make predicting outcomes very difficult..Your biopsy showed a high-risk situation. Since all 12 cores were positive, there is a good chance the horse has left the barn even though the scans can and did not detect it..This fact makes surgery a poor choice in my opinion. I am not a doctor. I'm just a guy like you who has been down this road...Surgery is only effective if the cancer is 100% localized in the prostate gland...

hydro24 profile image
hydro24 in reply to Fairwind

Yes there is definitely always going to be the potential for that "horse" situation from here on out I have read and been told. And trying to break down the statistics of a medical study is quite daunting and a bit terrifying personally not to mention over my head. I guess these are all things I will come to grips and hopefully get better at sooner rather then later. I also realize there is no one size fits all for any of us. I guess I'm just trying to see if based on what I have learned through my Drs. and my limited research and info that I've gleaned in this short period of time that my thinking of not doing the surgery is somewhat methodical and not going to be something I regret hopefully many years from now. Thank you for your posts.

RonnyBaby profile image
RonnyBaby

I support Fairwind's last comments. RP, after the horse has left the barn simply allows the disease to 'linger' and in a sneaky way, progress because they missed the obvious.

Hit the cancer hard and early, if possible. I support RT and ADT because your G8 score is higher up the scale and you should not miss your chance to try to deliver a knockout blow.

I hate the 'stats' and stories about 'failed' RPs and the most common / probable side effects that, IMO, are worse than radiation.

I was a G9 at Dx, followed the above protocol (RT & ADT) and, fortunately, after 2 years, am undetectable.

We wish you well in your journey.

hydro24 profile image
hydro24 in reply to RonnyBaby

Thx for comments

Don_1213 profile image
Don_1213 in reply to RonnyBaby

I'm very similar. Still on ADT, but G9 with 45 radiation treatments (minimal side effects), and 6 weeks after radiation I'm undetectable.

I'd suggest reading ncbi.nlm.nih.gov/pmc/articl...

There are a number of similar studies with very similar results.

Good luck!

hydro24 profile image
hydro24 in reply to Don_1213

Thanks Don appreciate your thoughts.

leo2634 profile image
leo2634

I have been on Zytiga,Eligard,and Xgeva for bone Mets. Since my diognoses 17 months ago. My PSA has been 0.1 since first month treatment. I have just started Provenge treatments I feel great so far. We are all different in our fight with the Beast but you must have trust in your medical team. Never give up never surrender. Leo

hydro24 profile image
hydro24 in reply to leo2634

Thanks

j-o-h-n profile image
j-o-h-n

OVERWHELMING, isn't it? We all went through what you're going through now. My suggestion is do NOT rush into whatever you decide. Get yourself a good Pca Oncologist at a reputable facility. If you mention your location and ask for referrals on a future post you may get some good results from our very competent members. The technical term for all of this shit is "it sucks".... BTW laugh!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/31/2019 6:18 PM DST

hydro24 profile image
hydro24 in reply to j-o-h-n

You got that right can’t think of anything I’d rather be doing less! Good bunch here very moved at everyone chiming in to help. Thanks John

tkalaf profile image
tkalaf

Hi hydro24,

I was Dx'd early 2018 with a PSA 9.1. From a DRE, there was a Nodule observed. My biopsy results had most cores at G9. My CT and Bone scans were both clean. Therefore I was given a Dx of non-metastatic advanced cancer. I turned 63.

My urologist suggested a small clinical trial, where my Dx fit the profile. The trial involved taking trial medicines for 3 months, prior to undergoing RP surgery. After meeting with the trial's oncologist, I joined. My surgery was on June 4th. It is now ~1 year later, and there have been no signs of recurrence in quarterly PSA tests.

Pathology from surgery found that I had capsular extensions. While my surgeon specializes in nerve-sparing, he told me had to takeout 2/3 of them on my right. He was able to spare the left side.

Incontinence, yes. However it has lessoned significantly in the last two months. These days I seldom use pads. Having ED, yes. This has been a struggle, yet feel I've regained to around ~50%. I'm 64 now, and feel very fortunate from this trial. Since you are similar in Dx, you may wish to explore a trial as an option as well. Good luck, and I wish you the best outcomes in all your choices! -Terry

hydro24 profile image
hydro24 in reply to tkalaf

Thank you Terry

BadNews4me profile image
BadNews4me

Hydro24, my diagnoses is very similar to yours and I’m having a horrible time trying to decide on a treatment. I do have a surgery date of Aug 27th with Dr V Patel in Orlando. That’s 2 months away and all I do is question whether surgery is best for my situation. I’ve talked with Drs from both surgery and radiation and I’m still shaking my head. Bone scan and MRI both came back with cancer contained to capsule. All the research and testing and I still feel like the only way to make a treatment decision is by flipping a coin. Not a very satisfying way to decide on treatment.

Hydro have you decide on how to move forward? If so was there any defining moment that helped in your decision?

I hope the best for you as you move forward.

hydro24 profile image
hydro24 in reply to BadNews4me

BN4me I know right! And the Drs. say well, it’s right on the line you could go either way yada yada. I don’t want to interfere with your thought process that’s much too personal. I’m finding the advice given on this forum is very valuable if taken and weighed collectively with all of your other research that you MUST do. There are people here that will relentlessly help you with links, articles, stats, etc.. please ask for their help! Do take your time to decide don’t let anyone rush you. We certainly can’t know all of each other’s details. In my case considering age, medical history, side effects, having to do radiation and hormone therapy no matter which option I go with and many other soul searching agonizing reasons I decided to bypass surgery. Believe me that choice in no way assures me of anything and that is possibly the only thing I am crystal clear on. A magic 8 ball might be better then a coin flip? I wish you my Orlando brother and everyone on this forum all the best of outcomes.

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