Not diagnosed yet, but in research mo... - Advanced Prostate...

Advanced Prostate Cancer
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Not diagnosed yet, but in research mode...looking at proton therapy especially

My husband is 48 years old and his PSA has risen since he first got tested for it about six years ago. He had a biopsy two years ago that was negative. He doesn't have a family history of prostate cancer, but his mother did have breast cancer.

Then, this past January, his PSA rose again (I think from about 2.5 to 4.8) and he did an MRI. Some "intermediate" suspicious areas. The doctor said he could wait and retest in about six months. He repeated PSA a few weeks ago about six months after the MRI. Came back higher (around 5.8). He is scheduled for another biopsy in about 7 weeks. That was first available time. First of all, is that too long to wait?

Then, if, God forbid, he gets a diagnosis of cancer, after a lot of research on the internet, I think he should do proton therapy. I would appreciate any more insight on how to do this. How do we choose a treatment center? Can we just tell them we want this type of treatment or will they evaluate him for all options? He has the flexibility to move somewhere else for 9 weeks, so that is a blessing. Thanks for any help with suggestions on figuring out where to go and first steps after diagnosis. I am still praying that it isn't cancer, but I want to be able to hit the ground running if it is. Also, on that note, how soon after diagnosis is treatment?

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I’m curious why you think he “should” do proton treatment

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I am “pro” proton therapy from all that I have read. Seems like the side effects are a lot fewer than surgery. People I have listened to who have had proton therapy have been very satisfied. I am open to hearing other sides, though. Also, I have spent some time looking at Robert Marckini’s Brotherhood of the Balloon site. Many people on there say they are trying so spread the word about their belief in Proton therapy.

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Well, there are several insistent proton evangelicals. You might want to challenge them for peer reviewed evidence. That said, it’s way too early to determine a treatment...I understand your eagerness to nail one down. Please wait to see what kind of prostate cancer your husband has. And then, your husband should take it from there

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"Belief" is right. It is a site for believers (religious fanatics) rather than scientists.

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I would implore you to stay in the present moment and stick to what is on your plate. Your idea to be prepared and "hit the ground running" is a way to rehearse tragedy and increase anxiety. It serves no useful purpose. You will have plenty of time to research alternatives after his diagnosis. PC is VERY slow growing, even for high risk cases.

There are many benign reasons for rising PSA besides PC. I recommend that before he get yet another biopsy, he get a genomic test on his last biopsy cores called "Confirm Dx." It shows the probability that his negative result was a true negative. Confirm Dx correctly predicts another negative biopsy 90% of the time. I understand that the manufacturer of the test is giving it away for free in order to build their database.

He should also track his PSA using Prostate Health Index (PHI) rather than just PSA. It is usually covered by insurance. It is less subject to errors due to BPH and prostatitis, and may help him avoid an unnecessary biopsy.

If, after Confirm Dx and PHI, he decides to have another biopsy, he should ask for mpMRI-targeting using a very experienced radiologist.

We can talk more after he's had these diagnostic tests.

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I had very similar PSA scores when I decided a biopsy was needed, while my then oncologist did not seem to think so. I researched biopsy procedures and found that an MRI guided fusion biopsy was more effective than having a standard biopsy done. I had a 3T MRI before the procedure, which indicated a growth the size of my fingernail. The biopsy was done in a hospital under anesthesia, using a machine that I was told cost over $2 million. Pathology results came back with 11 out of 16 core samples positive with Gleason 7/8. Also got second pathology opinion from Johns Hopkins which showed worse Gleason of 9/10. Metastasis into pelvic bone was found by that MRI. Started on Firmagon hormone therapy, and will also start using Elligard as well as Zytiga with prednisone next week. If he is found to be limited to only the prostate, then he will have more options available than I had. Be aware that radiation may limit a future surgical option. Just keep up your research and continue to ask questions.

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I was also told not to rush into things as prostate cancer is generally slow growing. That was unfortunately not the case for me. If I continued to listen to my former oncologist, I wouldn't be on my current course of treatment and would have been much worse off. At the suggestion of my urologist I had the 4K blood test, which gave me a score of 8 which indicates a possibly more aggressive cancer.

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While I watched and waited for six months and then got in line for three more of tests and appointments, my PSA doubled from 7 to 14. A 4K test scored 9 with 95% chance of PCa, which a biopsy and MRI confirmed. My ultimate diagnosis was advanced PCa, though very early in the lymph nodes. I’m in radiation and adt now.

I do wonder if whether it would have been contained in the capsule (more treatable) if I had been quicker. 4K test seems to be a good indicator of not a certain diagnosis. Got me to the biopsy I had been resisting.

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This is my story with Proton radiation. At 55 in 2012 I was diagnosed with G 6 cancer, did my research. I was scared off of surgery by stories of side effects and decided to go Proton at UPenn due wht I believed to be reduced chances of side effects and equal chance of cure. 4 years later PSA started to rise. Due to my first choice being radiation I had limited choices of salvage treatment, I tried IRE and that didnt work either. I was going to try Cryo as well but I have scar tissue in my uretha due to the radiation and they were unable to get the warming tube in. I researched salvage surgery but no one wanted to try due to prior treatment damages. Now with Lymph node size increasing and a suspicious spot on my spine, I am out of alternatives and yesterday I had my first hormone shots as that is the only treatment left for me.

You have to make your own decision and do what is best for you. In hindsight I wish I had gone with surgery or as is availabe today some of the focal treatments. I would have saved radiation as a fall back. Several of the men I know that have had surgery are fine in terms of side effects and some do have some issues, however all are cancer free at this time. Of the mens that I went through Proton with, 5 or 6 men, all are cancer free too. I was just the unlucky one that didn't have success.

Whatever treatment choice you choose you have a good chance at a cure, I wish you and your husband well.

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Thank you for sharing your experience with me. It is true that i have only heard the positive stories from proton therapy. It is good to hear the other side. I will keep you in my prayers. Take care.

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My Friend, how the compass of life turns well for some & not very well for others.We never know what we will wind up with... like playing black jack. I feel for you. i did the Radical in 2000. My PSA was 39. That surgeon hacked me up with a real radical. i thought I was going to die after. took me 8 months to get back on my feet.. but I was totally incontinent. 5 bladder neck surgeries to no avail. i now have a double artificial sphincter & I still have to wear a sanitary pad due to dribbling. I was given 5 years, but I'm still here! PSA 0.29 after 18 years. I'm 66 now & retired I can't even get a referal to a urologist.In Canada when you quit paying the gov't taxes they hope you go and die somewhere. I have an appointment in November to go to SunnyBrook Hospital in Toronto for a 8 year check on my artificial sphincter. so when I get there I am going to demand some proper CT scans to find out where I am emitting PSA.What ever happens in the future I will accept it as I have lived much longer than I was supposed to. God Bless you! LIVE LONG & PROSPER>

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Do a Google search on the comparison between Proton and Cyberknife therapy. This will help you in your choice. Proton seems to be an older treatment.

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Thank you to everyone who replied to my post. I really appreciate your taking the time to do this. There is a lot of information out there to wade though. Your replies have helped me take note of some things I hadn’t yet discovered. Thanks! Take care, all of you.

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I had a similar pattern with PSA but I'm 72. Now this comment will probably be met with derision from some posters as being over reactive, and I do not mean to sound alarmist, but I would follow Tall Allen's suggestion of genomic testing but check for mutations like BRCA2. My mother had breast cancer and I have Gleason 9. I was what I thought was diligent about getting checkups but wound up with this. (Admittedly I was on Avodart and it masked the PSA level--something else that I did not know at the time). I would ask your doctor about genomic testing and if he poo poos it I would think hard about getting it anyway. It is not that expensive but the breast cancer thing for me, could have been a tip off that, if I had known it earlier, could have saved me a lot of grief.

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Thank you. I have read about some correlation with breast cancer and prostate. That is why I mentioned it. Thank you for the suggestion.

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To KC18 : Slow down a bit... Listen to TallunderscoreAllen he's a walking encyclopedia regarding Pca.

Good Luck and Good Health.

j-o-h-n Friday 07/20/2018 4:51 PM EDT

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Hi, I don’t agree with some of what is written above but this is just my opinion. I don’t think there is any harm in researching early on, even if it does cause some anxiety, boy I wish I knew then what I know now because I didn’t get Time” to research. It doesn’t mean you have to make any decisions but just know what’s available out there.

“ PC is VERY slow growing, even for high risk cases.” This is generally the case but not always. My partners case may be unique but his PSA went from 50 to 444 in 8 weeks, so there isn’t always “plenty of time” to make decisions. If you have the knowledge ahead of diagnosis great, if you get better results, you have lost nothing and gained some knowledge.

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KC, My case is similar to yours. First biopsy was a false negative, Don't run too fast with what you think the treatment would be. Get a MRI fusion biopsy to the suspected area.Get a pathologist report on the score as well as the type of cancer if it exists. May want to get a cat and bone scan to make sure the horse didn't leave the barn. You will find great guidance on this site.Best wishes.

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