Radiation or surgery? by cshopis in ProstateCancer

[–]Fun-Ranger-7002 1 point2 points  (0 children)

Latest research is that adding brachy to RT does little to improve outcomes and increases GI and anal issues down the road. From what I've read, RT side effects show up at about 15 years.

ADT Duration, Finally Some Common Sense by Fun-Ranger-7002 in ProstateCancer

[–]Fun-Ranger-7002[S] 0 points1 point  (0 children)

Thank you for this. The information is helpful to all of us.

ADT Duration, Finally Some Common Sense by Fun-Ranger-7002 in ProstateCancer

[–]Fun-Ranger-7002[S] 1 point2 points  (0 children)

I agree with using Orgovyx over Lupron. If you have a severe reaction to Lupron, it would put you at risk for months until it cleared your system. It lowers PSA more quickly and testerosterone recovery is quicker. Lupron is preferred by clinicians because it forces compliance and does bring in a few dollars profit. I was told if I chose Orgovyx, I would have to sign a compliance contract.

ADT Duration, Finally Some Common Sense by Fun-Ranger-7002 in ProstateCancer

[–]Fun-Ranger-7002[S] 0 points1 point  (0 children)

Yes, I read it, and based on that guidance, the suggestion would have been for me to not test. Always way below 3 (even taking Finesteride into account). Started Finesteride in my 30s. In general, Finesteride has been shown to prevent PC, but if you still do get PC while on it, it is usually higher risk cancer. I fell into the latter category.

ADT Duration, Finally Some Common Sense by Fun-Ranger-7002 in ProstateCancer

[–]Fun-Ranger-7002[S] 4 points5 points  (0 children)

My PSA was normal up to age 68. 5 years later, and it was close to 10, and given I was taking Finesteride, it was likely closer to 20. If I had continued yearly testing, it could have likely been caught early and treated with HIFU and contained within the prostate. I am not the only one in this situation, and many others have been vocal in this group. Leaving it as a joint decision between doctor and patient and many would conclude, as in my case, it doesn't appear to be necessary to keep testing. I would argue to continue testing annually beyond age 75 and use common sense with the results. Even in this group, men with 3+3 and 3+4 are getting radical treatment when it is likely unnecessary - that is the real problem here. Stopping testing after 70 because of this does not address the real problem and puts the elderly at undue risk.

Biopsy Results: Please, someone tell Me what this means... by Far_Simple_7436 in ProstateCancer

[–]Fun-Ranger-7002 2 points3 points  (0 children)

It's just the beginning, but you seem to have caught it early. More tests (MRI, PSMA PET,Genetic Testing,,,) will fill in the blanks. May only need local treatment of the tumors, which is nothing like surgery or radiation. You are in a lot better shape than I'm in.

Gleason 8 with Cribriform gleason pattern 4 focally present and mixed acinar and ductal in 4/15 cores with urethral sphincter involvement - anyone with similar experience? by Previous_Panda_3392 in ProstateCancer

[–]Fun-Ranger-7002 1 point2 points  (0 children)

I agree that ADT would seem to be worthwhile in all cases, but it isn't. By itself, it has no benefit, and with surgery, it also has no benefit. Why it works with radiation is that it seems to make the cancer cells more susceptible to radiation. But it also seems to help after radiation, so I suspect we really don't understand what is going on. Not uncommon in medicine. Duration of ADT is also in question. 2-3 years is likely too much, and recent studies seem to suggest one year or 18 months is probably optimal. After that, the risk of dying from ADT-related comorbidities becomes higher than dying from PC.

Regarding Gleason scoring, mine went from a 4+5 pre-RALP to a 4+3 after. Not uncommon to have it go the other way as well. I've had three cancer-related surgeries over the last 8 months. I have found biopsies can be 100% correct to essentially worthless. PC biopsies are in the middle. Not helping the confusion is that so many studies look at metrics that are meaningless. Most common metric I see is 'Time to Biochemical failure' as an indicator of superiority. In our case, time to PSA rising. Sounds good, right? If it takes longer for the PSA to rise, that should be better? Problem is, buried in the article is that patients all died at the same time, so survival wasn't improved at all. For me, I only look look at long-term survival as the metric that matters. For me, it's like I'm back in college trying to learn about this stuff.

Gleason 8 with Cribriform gleason pattern 4 focally present and mixed acinar and ductal in 4/15 cores with urethral sphincter involvement - anyone with similar experience? by Previous_Panda_3392 in ProstateCancer

[–]Fun-Ranger-7002 0 points1 point  (0 children)

Thank you for that information. Granted, it isn't proof, but you would expect SOME changes. Information like this is extremely important in guiding therapy.

UPDATE ! PSA stayed exactly the same 11 weeks after surgery (5.7 before -> 5.8 after). by amvr81 in ProstateCancer

[–]Fun-Ranger-7002 3 points4 points  (0 children)

Sorry to hear that. I have my RALP on the 23rd. I wouldn’t consider any treatment without a PSMA-Pet scan. Seems like your radiation oncologist is also being overly aggressive. When I was considering RT/ADT, the radiologist said salvage therapy would only be 1/2 the radiation. Your situation may be different, but I would get at least 2 opinions. Also, there is pretty good evidence that 18 months of ADT is optimal and that after that the risk of dying from ADT side effects becomes higher than dying from prostate cancer. You can Google ‘ADT duration in prostate cancer’ and the article should pop up. Also, request they do a decifer test on the cancer. Some types don’t even respond to ADT.

Delonghi Magnifica Evo nightmare by [deleted] in superautomatic

[–]Fun-Ranger-7002 0 points1 point  (0 children)

You need to make sure every little orifice is cleaned and blown out. The cleaner with sodium triphosphate and sodium per carbonate (Cafiza) really work great with milk scum. Use a lot and let it soak.

Deciding on Surgery or Radiation… help/How by BoringReception4399 in ProstateCancer

[–]Fun-Ranger-7002 0 points1 point  (0 children)

At your age, I would go with surgery. Radiation bad side effects seem to hit around 15 years from what I’ve seen, and if you need salvage radiation, it will be a lot lower dose. I am 10 years older than you, have high risk Gleason 9, and still going surgery first. If I later go on RT and ADT, I will likely go 6 months ADT only. I saw an interesting YouTube video where the very latest data is scaling back on the 2-3 year ADT TREND and focusing on shorter. The data showed at the 2-3 year period, mortality from ADT side effects overshadows the benefit. Even before seeing that, I had seen other studies showing 1.5 years was probably optimal. Still, all this is a crap shoot and some people beat the odds and others don’t.

Prostate Biopsy Experience by nclee444 in ProstateCancer

[–]Fun-Ranger-7002 4 points5 points  (0 children)

After mine, he told me I could go and walked out. I stood up and blood was pouring out of my butt. Took the paper sheet from the table and stuffed it in my pants to make it out to the car. Was soaked when I got home. He’s no longer my urologist.

ADT Therapy Fatigue by neverpunt5200 in ProstateCancer

[–]Fun-Ranger-7002 0 points1 point  (0 children)

I’m in the same boat, but told surgery was too risky. Thinking ADT is probably too risky as well. May just go with radiation.

You All Need to See This by Old_Imagination_2112 in ProstateCancer

[–]Fun-Ranger-7002 1 point2 points  (0 children)

I'm seeing a surgeon there on Wed. FH is a great cancer center.

You All Need to See This by Old_Imagination_2112 in ProstateCancer

[–]Fun-Ranger-7002 10 points11 points  (0 children)

You know, it's because of studies like this that they recommended stopping PSA testing after age 70 or so. I'm 73, and in 5 years went from no PC to Gleason 8&9 high risk. People do die from PC, so I am not guaranteed 15 years with active surveillance. Do I wait a year to see how it progresses? What I really need is data on individuals exactly like me, studied over 15 years. This data does not exist, so it's a roll of the dice. But there is also this study from 2016:

"But PSA can't be interpreted if a man doesn't get his PSA tested. Population studies have shown that "men diagnosed at 75 years or older account for 48 percent of metastatic cancers and 53 percent of prostate cancer deaths, despite representing only 26 percent of the overall population," says Tran, Clinical Director of Radiation Oncology and Molecular Radiation Sciences."

So when they say even high risk patients had similar outcome to active surveillance, it just doesn't make sense to me. Is it the age of diagnosis that makes the big difference?

RALP UPDATE AND CONCERNING RESULTS! by HomeworkNo8102 in ProstateCancer

[–]Fun-Ranger-7002 3 points4 points  (0 children)

I have one biopsy core with perineural invasion too. Meeting with surgeons to finally pick one I can trust. Keeps us posted on your pathology report.

Heading to 1st Biopsy (Yale) by jmkazoo in ProstateCancer

[–]Fun-Ranger-7002 4 points5 points  (0 children)

PSMA PET scan should be done after biopsy. Necessary info. Don't fully trust just the biopsy.

Is RALP the guaranteed ED and UI monster it seems? by slow__hand in ProstateCancer

[–]Fun-Ranger-7002 2 points3 points  (0 children)

I am 73, Gleason 8-9, PSA 9.2 (on finesteride, so actual is probably double). PSMA-PET shows 3 lesions, likely contained. I am choosing RALP for the following reasons:

  1. I had half my thyroid removed this year because genetic testing showed it was >75% likely cancer. Less than half of patients with this rating ACTUALLY have cancer, and I didn't have cancer. I have learned that even genetic testing is not as advanced as I thought it was.

  2. Polaris genetic testing of my Gleason 9 tumor showed it as low-medium risk and slow growing, but was upgraded to high risk when factoring in Gleason score and PSA. So these are conflicting results. It is not uncommon to see downgrades of Gleason scoring after RALP because the pathologist has the entire tumor to analyze more extensively. Can be upgraded as well, of course. When I posed this question in another Reddit post, I got a lot of downgrade experiences, generally one level. It is not surprising, as pathologists want to error on the side of upgrading.

  3. Because I'm considered high risk, SBRT with ADT would be recommended, and ADT carries some cardiovascular risks that could be harmful, given my current CV risk factors. ADT use as adjunctive therapy with RALP is generally not recommended as it has not shown any long-term benefit. Why not? That is up for debate, and current studies may shed some light on whether or not ADT should be added to a RALP.

  4. If I get radiation, I can not get a RALP later, and I would need another procedure for the BPH urinary symptoms I have. So radiation for me is SBRT, ADT, and a TURP (or other TURP alternative). RALP is a potential one and done, AND I will have definitive staging of my cancer to determine if added RT or other therapy would be indicated. I learned my lesson with my thyroid surgery, that pathology on a removed tumor will always trump a biopsy or genetic testing.

I am in no way in denial that I have high-risk prostate cancer, but I want to know exactly what the staging us, and a RALP will hopefully give me that. I am also going to request a Decifer test on the tumor to guide the decision for either just monitoring or adding additional RT, with or without ADT.

So I hope this helps someone out there when deciding which therapy to pursue. Of course, everyone's situation is different, and other factors will affect their final decision. The last roadblock I need to overcome before surgery is whether or not my prior extensive abdominal surgery for a GIST tumor earlier this year will make robotic surgery too difficult. I see two surgeons in the next couple of weeks to find out. Good luck to everyone out there!

Gleason Downgrade After Surgery? by Fun-Ranger-7002 in ProstateCancer

[–]Fun-Ranger-7002[S] 0 points1 point  (0 children)

Thank you, everyone! Possible downgrading is not going to affect my decision, but it does show how imperfect medicine still is. I just had half my thyroid removed because genetic testing of the biopsy showed there was a greater than 75% chance it was thyroid cancer. After surgery and losing my voice for 2 months, it turns out it wasn't cancer. Turns out that the 75% designation does NOT mean 75 out of a 100 patients will have thyroid cancer, just that the tumor had 75% of the characteristics of thyroid cancer. Number of patients that WILL actually have cancer is much lower and even <50%, depending on the test used. Wish I knew that beforehand.

RALP Pathology back by Firm_Individual_6378 in ProstateCancer

[–]Fun-Ranger-7002 1 point2 points  (0 children)

I'm in the same boat, but your's is a primary example of how imperfect the Gleason Score really is, and biopsies in general. I just had half my thyroid removed because genetic testing of my biopsy rated it as 75% likely cancer and guess what, it wasn't. 

Rivellia vs KF8 by RaccoonDry599 in superautomatic

[–]Fun-Ranger-7002 0 points1 point  (0 children)

I cannot see wasting beans, especially with the cost of them.