Hello just diagnosed and very frightened

Steve, 

We are more than willing to help you learn, but please don't post essentially the same story twice. I already responded in the other thread. And don't be so negative/derogatory about the medical folks that are trying to help you.

Note that SBRT is never done in two sessions as monotherapy.

PS: You should take better notes from your visits and, if you can,  take someone along to back you up with respect to what the doctors actually said. Too many misunderstandings, it seems to me.

Steve1961 said:

Thanks

I record each session on my iPad. ..don’t need notes .... Stanford surgeon actually called me  back to respond and he said he has never heard of cancer being in the bottom region of the prostrate having a 1 in 3 chance of escaping ...he also said he doesn’t know why the radiologist would say that unless the radiologist knows something that he doesn’t ...so who do I believe ....this is what frustrates me ....all these different opinions and supposedly facts from drs one would hope they are facts ...

ever said, or wrote, that the decision process would be easy...

On the other hand, it is good to have several options.

Steve1961 said:

One last dr

ok saw hdr brachytherapy expert at UCSF been there for 22 years has done over 2000 treatments he seems very confident that 2 treatments done in one visit one in the afternoon next one ithe next morning will have to stay overnight will give me in the low 90 s for full recovery without reoccurrence .........sooo it’s up,to Friday now ..I am seeing UCSF top surgeon peter Carroll he has done over 2000 robotic surgery if he says that I really don’t have to do surgery then brachytherapy it is but if he suggests surgery then I will have to:make a serious decision and may need help ..it will either be 3 to 1 saying no surgery or 2 and 2 ..will return Friday night ...thanks to everyone all the advice about seeing as many dr as I could was great ,I am so blessed to be i this position ..I hsve great university hospitals close by and have seen many respected experts and I don’t  this for  granted 

Steve, You are really doing your due diligence, as you should do.   You are becoming the expert. .....keep on interviewing and asking questions........well done.

By the way what is your take on SBRT?

So... You are saying the Cyberknife guy at Stanford who did all the research and established the amount, frequency and/or correct targeting left Stanford for UCLA and took all his research with him, leaving Stanford in the dark for correct procedures in Cyberknife treatments, so now they are starting at or near square one? Is that legal? Doesn't Stanford have a clause that prevents research done in their institution from being pirated away?

Any research facility I have ever heard of or been associated with, makes you sign a waiver that prevents you from doing research in their facility then leaving and taking the research with you for a better deal somewhere else.

Not only is this unfair to Stanford, but this is highly unethical. The main concern of this doctor should be the lives of men counting on the development of new techniques to save them AND THEIR FAMILIES from the scourge and misery of prostate cancer. That he would pirate the research away for a little extra personal gain is unconscionable.

I would guess that Stanford would take him to court, but then that would tie up the research for years, and cost money to litigate. He may be calling their bluff, figuring they will just restart the research rather than tie it up in litigation.

This is the drawback of the free enterprise system that is dependent on biased, slow, expensive justice in a courtroom,  which is why judicial appointments are so important, and should not be politicized as they have been for the past 50 years or more. Justice should be swift, impartial, and available. It is none of those, thanks to injury attorneys and politicized judicial appointments.

Assuming this is what happened... How disappointing.

Steve1961 said:

surgury

yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

Well, as you can tell from this site that you are not alone.  I was diagnosed officially in Feb 2018.  PSA: 4.72; Gleason 4+3=7.  Looks like you are doing all the right things.  My doctor recommended RP.  He said the radiation, hormone, beam, seediing, etc. would take a lot of time and probably a lot of visits.  I am comfortable with this doctor.  He is 63; graduated from Duke University; was over the Onocology-Urology Department at Levine Cancer Institute; performed over 1000 robotic guided surgeries.  He is a no non-sense doctor.  In my journey and choosing to have an RP, I prioritised.  First and foremost , address the cancer; 2nd address the incontinence; 3rd address the ED.  My RP occurs on 3/20/2018.  I will put my thoughts out there on having the RP surgery.  Looking for some Depends and Pads now.  Good luck to you.

Steve,

This (last) post of yours makes sense to me. Since your initial diagnosis you did study a lot on the PCa subjects and I believe you have now the tools to decide on your next step. It may seem confusing but if you take a moment away from the issue, relaxing, I believe that you get the answer (in your mind) just like a awakening.

How about having a week vacation at that place you always wanted to visit or see? On your return you will be enlighten in something you trust and that, consequently, should follow. 

Looking back, today your status has not changed. The PSA is equal and the cancer is at the same place. Your knowledge on treatment capabilities and direct influences is pretty clear, and the contacts (clinics, doctors, etc) you got are trustful enough to advance with a therapy. You may opt for the one that gives you more comfort. That will be the best and you can rely on that choice. You will receive this hint naturally in your mind once you release the grip on the matter for a moment.

The cribriform type cancerous cells have a particular status in pathology, in particular with regards to the newer classification (2014) used in the grading system, that joints Gleason pattern of 3 in fused and cribriform types (upgrading) to 4 when aligning predictions in treatment outcomes. In other words, its finding could pair any Gs6 into a high risk Gleason score 8 (4+4). In RP terms means to go total radical (no spare techniques or partial dissection). In RT terms, a throughout radiation may be the preferred choice. Your doctor is exactly confirming the need for an extra EBR adjuvant to Brachy to complement the radical procedure.

Your previous comment and query regarding the consequences of RT when "... urgency or low flow or getting up at night to go to pee " are existing facts; I would say that these may get worse with radiation if the issue has been around for years and have been on treatments such as with the use of alpha blockers. These kinds of symptoms are quite common in guys recently diagnosed with prostate cancer. This exists due to a sort of neurological effect by the brain that tends to direct all senses to the prostate zone. Such, indirectly increases and causes conflicts in brain sensations leading to a volumetric symptom and unneeded reaction.

One should also consider any abnormal formation pushing the bladder wall-muscle up which could be irritating and causing such issues. I wonder if the cancer has been found at the prostate base. What about an influence/damage done by the additional needles in your second biopsy?

I hope my comments help in this difficult moment of your journey.

Best,

VGama

Be brave!

Coping with prostate cancer is tough. But we must deal with what we must deal with.

Once you decide on a treatment plan, accept it and help your doctors make it work. It will be OK. Best wishes.

Old-timer (Jerry)

A 27- year prostate cancer survivor 

Steve1961 said:

Thanks to all

e are evalusting each dr we saw..3 of them right away kicked to the curb.the other 5 being 3 radiologists ansv2 surgeons ...I guess the first surgeon dr chung head surgeon at Stanford said that genomic testing wasn’t necessary ..well  he Said my only option was surgury because of Gleason Score 4 in 2 cores...so in a sense he was right ..if u chose surgury really dies the matter what risk the cancer is buttttt this is the same guy who said I didn’t need an mri And then ordered one that cost 26000 yes 26 grand .the 3 radiologists 1 Stanford and 2 UCSF were good but neglected to offer genomic testing which I think they should have especially with gkeason score 4 because that is no longer low risk it’s intermediate and ewe all know that cyber knife and brachytherapy are for low risk patients ...hmmm so I really don’t think those 3 were looking out fir me ...except the Stanford dr...he asked me what I want to accomplish ..I said a cure ..he said 2 brachytherapy treatment and 20 EBR and if mt PSA rose to over 10 then hormone treatments as well..he said all that would give me 95% chance of cure.well I wouldn’t need the hormone .he also,said that if I didn’t do all of this and just brachytherapy and I had reoccurran s theN I would need hormone for life ...sooo do I really want to be put under twice in one week and then 20 ERB treatments just  to avoid surgury..I’ mean I might have even more long term side effect withLl that ...leaning surgury having a family meeting and we will make a joint decision wife 2 sons 1 daughter and 1 son in law. THanks for all Your help without all of everines advice I would have made a blind decision  and probably lived to regret it but now I won’t 

steve,

I don’t think I responded on this tread before but here is my 2 cents. You are 56 y/o, four years older then me. Surgery in my case did not bring expected outcome. Thanks God, I am cancer free for now, but price I paid for it is  from QoL prospective too high.

I am almost 18 months from RP and living completely sexless life. I lost my functionality and I lost very important part of me. 

I am not advising you what to choosE. I am sure you have a valid reason for your choice and your family support. I hope you will have same support in case of unexpected.In my case, coin landed on the wrong side and now, I am suffering alone.

If I knew before surgery what I know now, I would avoid surgeons by 9 miles radius. 

I made mistake and I am paying for it now.

Life made unexpected turn and before I knew it, I was in one way street going in wrong direction.

I wish you best of luck with your treatment. God bless!

MK

Steve1961 said:

surgury

yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

I had my RP at 67; Bladder Neck Reconstruction; and Pelvic lymph nodes removed (8 of them).  In my case, after the surgery and the catheter removed, my stream flow has not been that good since I was much younger.  If you need or want to take a look at my surgical procedure (robot guided assisted) please go to this post on this site.  Description of procedure RP 3/20/2018. Good luck to you.  You will be flooded with a lot of good information.  Take a deep breath and weigh it out.