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Hello just diagnosed and very frightened

Steve1961
Posts: 250
Joined: Dec 2017

I was just diagnosed Thursday by my urologist . PSA 7.8 ..had 5.5 for many years with 3 biopsy’s and were all good. This last one not sooo good.2 out of 12 showed some cancer .thsts all I know until I see the specialist next Thursday.thoughmy urologist did give me encouragement saying we caught it very early whatever that means...don’t know what to ask the specialist on Thursday I guess my biggest fear is if it has spread or not ..any input would be muchhhhhhh apppreciated ..thanks in advance ..how I am 56 years old 

Scumcrode
Posts: 15
Joined: Mar 2017

The most important thing is that you are comfortable with your course of action. I recommend you take your time deciding. Luckily PC is very slow growing. Do not rush into any treatment. My first instinct was RP too, but even the 6 docs who recommended it confessed that there was a 70% chance I'd be removing the prostate for nothing, and that just didn't sit well with me, then doctors #7 and 8, along with the supporters here at this forum, told me to calm down and take my time in deciding what to do. I understand that you are stage 2 so your situation is different than mine. I'm only saying that there are many courses of action. For now I am still doing Active Surveillance, but if I do any kind of treatment it will most likely be HIFU. Have you looked into that? I'm not certain if you're a candidate, or if you can afford it as insurance is not yet paying for it, but there are rarely any side effects and it is virtually an identical cure. The doctors that do it can screen you by phone. The long term chance of it recurring is a tiny bit higher, like 1 or 2% more than RP. But you can always get RP or radiation later if and when that occurs. Why not have another 15, 20 or 30 years of normal erections and urination first before doing either of those drastic treatments? It is assumed HIFU will be covered within a few years too. For some men, RP is what they are most comfortable with and if that's your choice then good luck. Just don't feel rushed into deciding.  

Steve1961
Posts: 250
Joined: Dec 2017

saw my first urologst/surgeon yesterday...WOW what aguy...first told me the Drs  i have neen seeing are the absolute worst drs around and he is surprised their licenses havent been revokes..he is right i am done with them....so this Dr 64 years old 34 years expierience with prostyrate cancer....expalined it all..showed  me all about gleason had 5 prostate figures showing whjat it may look like at each stage..spent over an hour with us ..he has done over 3000 open surguries   and he talked me out of surgury..he said at my stage which is t1 and the cancer being maybe only .5 ich long  glrason score PSA level  ....and so on and so forth why on earth would i want an invasive destrictive surgury  that most likely will leave me without any manhood..he said incontinanace is not an issue but he almopst guaranteed getting an erection would be all gone....he says brachytherapy is the best and most effective plan for me..just so happens my wifes uncle had this done 34 years ago and he is now 76 and going strong...so now next week...monday GP  tuesday  bone scan   wednesday Stanford  and i will,have alot of questions for this surgeon  and thursday meet the brachytherapy radiologist.....wow...at least i will be able to make a decision soon.....thanks agaon everyone for all the help...i will take my time..i thin k i am leaning brachytherapy  way  we shall see......it blows my mind to know the dr i was seeing for 6 years  and his partner are absolutely worthless  money hungry pricks...wow good to get 2 or 3 opinions thats for sure

fishinguy
Posts: 18
Joined: Dec 2017

Good for you Steve.   Best wishes moving forward towards your decision.   IMHO, you're on the right track and frame of mind now to make a good informed decision.

ASAdvocate
Posts: 117
Joined: Apr 2017

Great post, but, many institutions have stopped using the endo-rectal coil since they installed 3Telsa MRI's.  John Hopkins stopped using them years ago, and now use an apron coil. Way too much patient discomfort with the ERC's.  If you just had one, you know what I mean.

Tech70
Posts: 54
Joined: Nov 2017

I had an MRI about 6 weeks ago and they used a pelvic phased array coil, essentially an apron-like device resting on the pelvis.  The radiologist's report was conclusive ( no lesion of concern, thank goodness) and there hae been studies showing equivalent results using both PPA and ERC.

Steve1961
Posts: 250
Joined: Dec 2017

yep cancelled the last mri they were going to use ERC  I said thanks but no thanks ..called another new hospital and they use the apron going there next week....thanks for saving me a bit more misery and stress I appreciate it sooo much ...btw they were not happy about cancelling oh well I wasn’t happy hsving to call them 6 times either..

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Nine years ago, I had an endo-rctal coil used in conjunction with a tesla 1.5 for better accuracy; it was very uncomfortable.  Since then with the advent of the the tesla 3.0 mri , the endorectal coil is generally not used in practice.

Steve1961
Posts: 250
Joined: Dec 2017

so when I show up for the mri hopefully they will. Be using the apron but if not what then get up and leave or should I call to find out first 

Tech70
Posts: 54
Joined: Nov 2017

If they tell you to prep for the MRI by taking an enema before your appointment, they are planning to use an ERC.  If you ask if there is any prep required and they say no, then they probably are planning to use a phased array pelvic coil.  That was my experiene

Steve1961
Posts: 250
Joined: Dec 2017

It’s a bit confusing .my dr that diagosed me didn’t tell me anything at all needless to say if is fired ....but when I asked him all the questions I asked him if I was stage 2 he said yes..with I take with a grain of salt...now my new urologist whom I really like when going over everything told me I was t1 which I think is stage one...I thought automatically Gleason 7 is stage 2. My uro said even Gleason score 7 with small tumor sizees ,PSA under 10and a clean DRE puts me at stage 1 intermediate risk  because of Gleason score 7  if yhe score was 6 then it would be stage 1 low risk   .so is this right    any way I can tell for sure by looking at pathology report ..thanks     I have learned not to trust any drs sad but u just cantit sad to think they care more about money that your life   some of them

grahambda
Posts: 18
Joined: Dec 2017
Steve1961
Posts: 250
Joined: Dec 2017

wow so many things to consider so confusing.anyone know about this oncotype dx testing .i see harely anyone has done it. Apparantly it tells you how aggressive the cancer is and helps u with your trwatment decision. Can Gleason scores u get be wrong . when u get a 3-4 score can they be wrong and it be 4-3 or worse .  If this oncotype dx is so good why aren’t all dr using it.r they not using it because it is relatively new and they don’t know enough about it . I am just trying to make a right decision beteen surgury brachytherapy and I want to   know exactly where I am at now without having drs guess because of one pathology report. Should I suggest getting oncotype dx testing done or am I over thinking all this just when I start feeling good about starting to make a decision something else pops up to cause worry thanks any way bout about oncotype dx would be appreciated 

Tech70
Posts: 54
Joined: Nov 2017

Oncotype DX testing is usually for folks who are candidates for active survelllance.  I was such an person and I had Oncotype testing done.  The result was a GPS of 19 which confirmed my decision to go with AS.  I have a less than 1% chance of developing metasatic PCa or dying of PCa within the next 10 years based on that GPS.  However if your Gleason is 4+3  you would be marginal for AS.  However, if you did get the testing and your GPS came back high, say 60 or greater, then you would probably rule out AS extirely.  Also, if I recall, you're too young to be on Medicare so you would want to check with your insurance company to see if they cover it.  The test is a bit over $4000 which is covered by Medicare but might not be by other insurance.

contento
Posts: 76
Joined: Jul 2017

Steve, I'm not sure you can ever get a perfect clear gleason score since to some extent it is subjective depending on the pathologist. However, I believe that the most accurate  gleason can only be attained if the pathologist  has your prostate in hand. I had 3 biopsy 's before they found my cancer and the last biopsy revealed  a gleason 7 (3+4).

I opted  for surgery  and once my prostate was removed and evaluated my gleason was upgraded to 8 (4+4). So yes it it is very possible that your gleason score can change.

Steve1961
Posts: 250
Joined: Dec 2017

so contento  how are u now is all good i hope.

Steve1961
Posts: 250
Joined: Dec 2017

well looks like I was misinformed again....or was I ....Stanford surgeon tells me a am not a candidate for brachytherapy.reason why because I am intermediate...also because I have urinary problems now and they are pretty extensive ..brachytherapy would most likely make those problems much worse...then he stated that if brachytherapy was not successful there is no plan b because u won’t be able to remove prostrate after brachytherapy...he also said I didn’t need a bone scan even though I have done it already..hr said if they see something on the scan it’s not from the prostrate. And then u have to deal with that and have biopsies and maybe more and most of the time it was nothing.   the Stanford surgeon was very thorough he said though the DRE is ok tool it could be on the other side ...he said the real only way to know for sure is to remove send it out to the lab and go from there...he did say will all mt stats and his experience that I have a 95 % of no reoccorrance which is great...also said no need for mri or ct scan because they won’t show a lot for someone at my stage but if I was to get one the mri is the one to get ..my new urologist suggested anct scan instead of mri.....wow this new neuro gave me sooooo much hope about brachytherapy and now that’s out the window....I am meeting with the brachytherapy dr today just to see what he has to say...i comes to a point of who do u believe ....this Stanford surgeon has been st Stanford since 2006 has over 1200 surguries under his belt is 45 years old and definitely seems like he knows what he is doing and takikng about then again I thought the same of the Nero I saw who is 65 and been at it for 36 years and had ovef 2500 surguries under his belt ....wow what a rollercoaster any thoughts u seem to trust all of you people over drs 

contento
Posts: 76
Joined: Jul 2017

Steve, it should be interesting today to hear the oncologists response  to the Standford surgeon 's rationale  as to why you are not a candidate  for Brachytherapy i.e. intermediate grade w/ urinary  issues. Make sure he addresses these concerns. If not Brachytherapy what about IMRT ? Hopefully you'll cover all the radiation type options and then you could make your decision as to  weather you do surgery  or some type of radiation. --  good luck -- contento

 

PS -- I'm doing just fine as my psa is non- detectable..

Steve1961
Posts: 250
Joined: Dec 2017

wow i cant believe some of these guys are drs  radiologist lol just met with a total schmuck radiologist who does brachyology...what a jerk and a liar..he bad mouthed stanford  and the surgeon i saw..he said stanford is the worst place to have surgury..he said he has done over 5000 in 18 years lol i queationed him on that because i do math lol i said that comes out to 1  a day he yep i just did 2 today across the bay...he had no receptionist the room had tools out everwhere  and he straight up lied and said yopu can have your prostrate out after radiation  and i know u cant period.....WOW unreal....so i have an app with UCSF brachytherapy come on they r supposed to be the 4th best in the cou ntry hopefully i will the truth out if them if i am a candidate or not...and then i will meet with a surgeon from ucsf  it will interesting if they both haver different views at the same place ..i sure hope not i am getting frustrtaed and upset which i dont need.in fact i think i will go to stanford as well for brachyherapy consult  to see if thjey differ from their top surgeon asa well.i plan on holding all thier  feet to the fire thats for sure i want answers and straight one or i will go above their head at the universities .hope i can make a decision soon

Steve1961
Posts: 250
Joined: Dec 2017

Wow there are a bunch of no good lying scum bad drs out there....maybe because I live in sickening northern calif near Silicon Valley and everything is about money here it’s disgusting the drs and surgeons and radiations assholes I have been seeing unreallll..the last 3 brought up money sooo many times saying I don’t make money doing this I would make more I had u do this and that wowwww I can’t believe thar a lot of people fall for this crap ...I hsve learned only going to universities from here out..it seems they do care about you and are not getting paid by each greedy procedure at least I hope not ....

Steve1961
Posts: 250
Joined: Dec 2017

and thanks to all of u wonderful people and knowledge...very helpful over the last 6 weeks ..I appreciate everything.its because of your advice I am not falling for any of this....yes u were all right to take your time ..lol...all yhe so called specialists  say u have  to wait at least 6 to 8 weeks or more afyer a biopsy before any treatment so their u go about not being in s hurry ...only good encouring words from every quack I have seen is that they all said I am going to be just fine after this ...I believe that ..thank u all and god bless u ..I will keep posted..hopefully not as much ...and with better news about treatment .thanks agsin

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Message from Steve1961,


hello i am the pain in the butt lol that has quite a long thread going..it seems that you my friend are very knowledgeable about alot of treatment.... I.want YOUR opinion because i respect all of your opinions i have read.....i have seen 4 quacks so far and didnt pay any attention to anything they had to say except they all said that i will be fine and most likely cured  which is good....so i did go to Stanford and met with RP surgeon that has 1200 under his belt....he highly stated that i wasnt a candidate for Brachytherapy because i am intermediate..Also he said that with brachytherapy  there really is no plan B if it comes back...hmmmthats the only comment i didnt go for....so this week met with a surgeon from UCSF   26 year veteran has over 1200 open and around 500 robotic ..this man said i am an candidate fro brachy and cyberknife..he explained it all to me  and he even said that surgery is invasive and that should be the last resort  and in  my case he felt strongly i should
have one of the radiation therapies...he said at my stage the outcome are all the same for a cure in the 90% with any treatment i choose...today met with CK specialist that did swingshiftworker 6 years ago....so my stats are 3 cores positive  3+3  3+4 3+4  20 % 60% 70%  low psa 8.1 DRE clean i guess where they were located and all this put me at the lower end of the intermediate risk which makes me a candidate......so this ck  has been around for a while but only has 10 years of stats.....which are good...they use the same radiation as the other methods  and expect the same outcome...my question is should i believe them ... this method seems way to easy and effortless ..can i be soo lucky to have this simple procedure done  and be free of PC for ever...also i will be going to stanford again to their ck clinic because they pioneered it back in 1990  and have made MAJOR advances  and apparent have done over 7000 treatments  so they say..oh also waiting on Stanford to re look over my
pathology slides  hopefully all will stay the same or even better i..thanks for your time   and input i cant say how much all u people have helped me thru my journey..i hope i can figure out a way to give back..sure has been a tough ride  making a decision  i think the treatment part will be easier  thanks again..just wondering what u think about ck and everything i have said...also going for a brachy consultation with an expert lol  but i have some existing urinary problem that may cause me major problems with brachy that i dont need will discuss that with him at appointment  thanks  again.....man i hope my insurance will cover consultations"

 

Dear Steve,

I wonder, did you have a T3 MRI yet. This image test is needed for any type of treatment that you will have so you will be able to better quantify if the cancer has or has not escaped the prostate. Eash of these institution likes to do their own MRI, so if for example you are treated at UCSF they will want to do the MRI and probably will not except the results from certain other institutions.

 

With reguard to SBRT, of which cyberknife is one of the machines that deliver.

You mention that you were told that Stanford did 7000. Well that number is high and probably includes all SBRT's done to include treatment for parts of the body other than prostate...ie brain, etc, etc. They probably have done 500 to 700 tops for prostate cancer treatment.

Yes Stanford pioneered cyberknife for prostate cancer, however the doctors who originated cyberknife for prostate cancer  with them ,have since switched to other organizations. 

Here is a nine year study of SBRT done with cyberknife by a doctor Katz in NYC, who I believe has treated the most prostate with cyberkife.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

Nine-year outcomes after treatment with SBRT

 

 
 
 
 
 

 

 
11 Votes

 

Katz and Kang will present their 9-year outcomes on 515 patients treated by stereotactic body radiation therapy (SBRT) at the Genitourinary Cancers Symposium tomorrow (see abstract no. 20; “Stereotactic body radiation therapy for low-, intermediate- and high-risk prostate cancer: disease control and quality of life at 9 years”). This represents the longest tracking of SBRT outcomes — just 1 year short of the IMRT tracking reported by Alicikus et al. on a starting cohort of 170 patients treated at Memorial Sloan-Kettering Cancer Center.

The patients were treated between 2006 and 2010 using the CyberKnife platform.

  • 324 were low risk, 139 were intermediate risk, and 52 were high risk according to NCCN definitions.
  • 70 patients received adjuvant ADT for up to 1 year.
  • 158 patients, all with Gleason score < 4 + 3, received 35 Gy in 5 fractions.
  • 357 patients received 36.25 Gy in 5 fractions.
  • Median patient age was 69 years.
  • Median patient PSA level at diagnosis was 6.5 ng/ml.

After a median follow-up of 84 months, the authors report the following oncological control data:

  • 9-year freedom from biochemical failure was
    • 95 percent for low-risk men
    • 89 percent for intermediate-risk men
    • 66 percent for high-risk men
  • Median PSA was 0.11 ng/ml (at 78 months)
  • No difference in biochemical control for the lower vs. the higher radiation dose (for the men with Gleason scores of < 4 + 3 = 7)
  • 2 deaths from prostate cancer (i.e., an 0.4 percent prostate cancer-specific mortality rate)
  • 74 deaths from all causes (i.e., a 14 percent overall mortality rate)

They also report the following toxicity data:

  • Late rectal toxicity:
    • Grade 2: 4 percent
  • Late urinary toxicity:
    • Grade 2: 9.5 percent
    • Grade 3: 1.9 percent
    • Grade 2 or 3: 6.9 percent for the lower radiation dose vs. 13.2 percent for the higher dose.
  • Patient-reported bowel and urinary quality-of-life (based on EPIC questionnaire data) declined at 1 month then returned to baseline by 2 years; sexual quality-of-life declined by 29 percent at last follow-up.

These are clearly excellent results for any kind of radical therapy. The authors conclude:

These long-term results appear superior to standard IMRT with lower cost and are strikingly similar to HDR therapy.

While it’s tempting to conclude that neither the higher dose of radiation, with its greater toxicity, nor the addition of ADT conferred any incremental benefit, that can only be proved with a randomized clinical trial. Until so proven, it must be understood as only a good hypothesis to be discussed by patients with their radiation oncologists. It is also worth noting that these data reflect the outcomes of one very expert practitioner. There is an SBRT registry currently collecting data across many treatment centers.

The reported outcomes are nearly identical to those reported at 7 years (see this link,this link, and this link), indicating very stable control and no additional late-term toxicity with longer follow-up. In light of that, its low cost, convenience, and the fact that the standard of care, IMRT, has only one more year of follow-up on a much smaller sample size, it’s difficult to understand why some insurance companies still balk at covering SBRT for low- and intermediate-risk patients. Medicare does cover this.

Editorial note: This commentary was written for The “New” Prostate Cancer InfoLink by Allen Edel.

...........................................................

Steve, please note that in this study for men  with intermediate prostate cancer, there is a 89 percent cure rate; the perimeter of the radiation can be easily expanded immediately outside the prostate.

.................................

SBRT is given in four or five sessions, depending on the preference of the doctor administering. 

I cannot comment on which institution, Stanford or UCSF will provide a better outcome. with sbrt. They are probably very similar. You will have to do your research in order to select one over the other.

The side effects with sbrt are minimal. Generally, you can go on with your normal activities the days that you are treated.

For the most part you will not be able to ejaculate after sbrt.

It takes a while to reach nadir. Quite often 18 to 2 months out , there is a radiaition bump, then the psa reading continue to lower levels. Generally you want the PSA to go under 1.

SBRT is a very precise radiation treatment, as far as I know the most precise, more so than IMRT.

The cure rate is very similar to IMRT.

The cure rate is also similar to surgery, but with less side effects

 

...........................................................................

Brachytherapy

Not an expert about brachy, but with intermediate cancer , some seeds will also have to be implanted outside the prostate.I think that these seeds need to have less radiation. The seeds have a 3 mm range. It may not be as effective outside the prostate....I am not an expert, just making a laymans guess. I suggest that you speak with a radiation oncologist who specializes in brachy.

........................................

 

.

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

A lot of good advice, and a lot to think about, so relax think twice and then act...   as to the virtual beer, ill be standing by to see how that works...

Steve1961
Posts: 250
Joined: Dec 2017

Finally getting the t3mri dine and yes they r using endo recto coil..I know people have said to stay away from it but it by far produces the best image u can ask for far superior than the apron...the results will help me a lot in my decision as well ..also getting another PSA dione as well been 4 months ...hope all is the same...we shall see...I am closer to maki g a decision ...I am holding all drs feet to the fire though ...I am putting them on the spot ...getting odd answers from some lol..even drs answer by Saying that’s weird I wonder why he would say that....a lot of thinking and evaluating to be done that’s for sure ,,,like on the 12th I will be meeting with the Stanford brachytherapy/cyberknife and I will flat out ask him why there Stanford’s top surgeon definitely says I am not a candidate fir radiation and advised against it ....can’t wait to hear this answer ....thanks everyone for listening 

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

So many "experts" saying so much! I can't read it all, but I am ever so interested. Have you reached a decision about what treartment you are choosing? When will treatment begin or take place? Are you still scared? What are you thinking now?

Remember me? I am a 26-year prostate cancer survivor. Anybody interested in how I felt about it 26 years ago and how I feel about it now, at age 91?

Old-timer (Jerry)

Steve1961
Posts: 250
Joined: Dec 2017

so meeting with surgeons and radiologists will be making a decision within weeks I hope . All drs saying all positive things but when I ask shoukd I get anither PSA test  I am told not necessary . It’s been 4 months since last psa 8.1  biopsy now 2 months ago who knows my psa could rise I hope not but what if it’s now. 12 this could be a game changer I wouldn’t be on the low end of intermediate anymore thats  why I am Bring told I am a good candidate fir brachy and cyberknife  any thoughts I think I am going to get a recent psa also mri is Tuesday night hopefully this will all help me in my decision    By the way I can thank all if u in helping make the right decision with all your good advice about taking my time and getting many opinions 

Steve1961
Posts: 250
Joined: Dec 2017

took a break after all I hsve going on ..I had to put my dear old 15 year old dog down last week...it Happened suddenly .....man heartbreaking ...........so my bone scan was clear  also t3 mri looks good corresponds with biopsy looks to be contained knock on wood.   UCSF Cyberknife says I am the perfect candidate 4 sessions over 2 weeks done 92 % success rate...seems tooo easy ......went to Stanford last week radiologist hi dose brachytherapy with 20sessions radiation 97% success rate if my PSA  is under 10 which it is now but if it is over 10 now then brachytherapy 20sesssions radiation and hormone therapy for 4 months 97% success rate....so getting another PSA test Friday ..if my PSA is over 10 I think I may opt for surgery ...I mean come on brachytherapy radiation and hormone ..the hormone side effects last about 1.5 years ......sooooo damn confusing ....and UCSF Cyberknife only 4 sessions and done I find this hard to believe.stanford does Cyberknife but not on the prostrate because they are still guessing the dose of radiation to give each patient it’s not perfected yet  so Stanford will not touch it u til it’s perfected......oh great I was thinking about Cyberknife now I don’t. Now ...I guess I will wait and see what my PSA is ...will stay in touch ....my goodness this is turning  into a soap opera 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

SBRT (cybernife) was invented at Stanford. Prostate cancer was successfully treated there. SBRT given by  cyberknife and other machines such as varion is widely used at major institutions of learning, that are centers of excellence. Did the radiation oncologist at stanford who told you this had a different specialty that he wanted to sell you?

 

https://stanfordhealthcare.org/medical-treatments/c/cyberknife.html

 

Once again here are nine year results of this treatment type. These results look pretty good to me.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

Old Salt
Posts: 720
Joined: Aug 2014

The Stanford folks that you talked to haven't told you the whole story. The current staff may not know how to properly run SBRT, but Stanford did have an experienced SBRT team for prostate cancer. THe team was headed by Chris King, but he left for UCLA. Don't know the background of all of this, but Stanford then closed the prostate cancer SBRT effort for some time. Now back up apparently.

http://radonc.ucla.edu/prostate-cancer-sbrt

If I were to choose SBRT and lived in your neighborhood, I would go with the Gottschalk group at UCSF becauses of their experience.

 

Steve1961
Posts: 250
Joined: Dec 2017

SO STANFORD DID SAY THAT DR KING WAS THE TRIAL CYBERKNIFE DR AT STANFORD  AND HE TOOK THE TRIAL WITH HIM TO UCLA  AND STANFORD HASNT OPENED ANOTHER ONE YET....HMMM  ALSO THE STANFORD RADIOLOGIST SAID SINCE THE CANCER I HAVE IS IN THE LOWER REGION THERE IS A 30% CHANCE OF ESCAPE...WHY THE LOWER REGION IS MORE RISKY THAN THE REST OF THE PROSTRATE I DONT KNOW...SO I ASKED THE SURGEON AT STANFORD IF THIS IS TRUE  WILL WAIT FOR HIS REPLY AND LET U ALL KNOW....WAS ALSO TOLD DOING CYBERKNIFE IS A GAMBLE BECAUSE THE DONT KNOW THE EXACT DOSE TO GIVE EACH PATIENT  ITS NOT AS SIMPLE AS DIVIVDING 40 TREATMENTS BY 4,,, SO I ASKED THE UCSF CYBERKNIFE DR THIS QUESTION...I ASKED SO HOW DO U CALCULATE THE DOES OF RADIATION TO USE  AND IS IT THE SAME FOR EACH PATIENT  ...WILL ALSO WAIT FOR RESPONSE...HOPEFULLY ALL U PEOPLE CAM HELP ME DECIDE WHO IS FULL OF IT OR NOT.....ALSO I AN SEEING UCSF CYBERK NIFE DR TOMMORROW...I HAVE ATON OF QUESTIONS TO ASK..I WILL ASK HIM IF I DECIDE TO DO BRACHY   I WILL NEED NEED 21 TREATMENT OF RADIATION AS  WE.... SO WHY COULDNT I DO JUST 2 TREATMENTS OF CYBERKNIFE INSTEAD OF 21 TREATMENTS OF STANDARD RADIATION..MAKES SENSE TO ME  RIGHT.. I WILL OUT THE PIECES OF THIS PUZZLE TOGETHER SOON..ALSO GETTING MY LATEST PSA SCORE TODAY..I PRAY ITS STILL BELOW 10  IF NOT NO WAY I WILL DO BRACHYTHERAPY  AND 21 TREATMENTS OF RADIATION  AND HORMONE FOR 4 MONTHS,,I WILL JUST HAVE IT OUT  SCREW ALL THAT  WILL KEEP IN TOUCH

Old Salt
Posts: 720
Joined: Aug 2014

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
Posts: 250
Joined: Dec 2017

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 ...

Old Salt
Posts: 720
Joined: Aug 2014

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

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

Steve1961
Posts: 250
Joined: Dec 2017

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 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

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?

Steve1961
Posts: 250
Joined: Dec 2017

Ok so I went to UCSF and saw dr gottschaulk Cyberknife sbrt guy...so what can I say..sounds great ..almost too easy 4 treatments and done ...what I didn’t like was nit enough data only I think 9 years ..though the 9 years were very promising ..also it takes years for PSA to drop like 7 to 8 years .I was told that whoever does this treatment is doing a study ...stanfords Cyberknife guy left for UCLA and took the study with him and Stanford didn’t open another Cyberknife program yet because it’s not perfected enough...basically the are guessing on how much radiation to give ...so I calle on UCSF guy and asked how they determine the of radiation given is it the same or different for each patient ..dr responded that he uses his own formula based off this and that ...hmm.seems like this his his own study .....didn5 like that ...apparantly swingshift worker had cyberknife done in 2010 and from what I can see his PSA is still droppin* 7 years later ..I have reached out to him to ask about his PSA level Gleason score etc etc but he hasn’t replied ..not much help..oh well ....leaning towards brachytherapy at UCSF ..so most impressed with them and that dr..2 trestmrnts in 1 overnight stay and should be done just need to look into long term side effects .internal is always better than external 

Grinder
Posts: 442
Joined: Mar 2017

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
Posts: 250
Joined: Dec 2017

i am just the messenger ..this is exactly what I was told I can copy and paste the email message if u like...I thought it was odd myself...Stanford no longer  .cyberknifeb.no remember the man that told me all the reasons why they don’t is a brachytherapy man ..so he may be bias but he shouldn’t be saying things about why Stanford does not do Cyberknife if he diesnt have .facts and h3 is Stanford’s top brachytherapy man ...not to impressed with Stanford anymore whatever treatment I chose it will be done at UCSF 

Steve1961
Posts: 250
Joined: Dec 2017

ok so I saw the final top surgeon at UCSF peter Carroll on March 4th had. Blood test  done feb 26. Psa has gone down from 8.1 in August to 7.4   Had an untrasound done shuck I was shown and was told looks like fully contained and not too close to margain. So this surgeon wants UCSF to look at tge slides and also wanted genetic testing done to see exactly what type of cancer it is  low medium hi risk   He was upset they no one had done this already I gave a follow up on April 18 I will have had every test done and this dr said he will help us make the right decision and not necessarily surgury. He seems like is is out fir my best interest will be back on the 18th with updates 

Steve1961
Posts: 250
Joined: Dec 2017

So does everyone with pc have prostrate problems like urgency or low flow or getting up at night to go . I have all these and if I choose some kind of radiation I am worried that my problems will get worse and that’s a tough thing to deal with the rest of your life . Sometimes I am
Just dripping out fir like 4 5 minutes kinda sucks and dint know if I want to deal with this just to avoid surgery

Steve1961
Posts: 250
Joined: Dec 2017

well I went for my final consultation at UCSF dr Peter Carroll very well known surgeon ...the results of genomic  testing  not good seems like the cancer is high risk and after UCSF reviewing the slides Dr. Carroll did not like the fact that the Gleason 4 cancer is of predominantly of fused and cribiform type...what ever that means ..I looked it up and it diesnt seem bad  but he said it is ....anyway he suggested that since the cancer is high risk and tbat it still seems to be inside  that surgury would b3 the best option but if I was to chilose brachytherapy that I should definitely follow it up with 20 doses of EBR .hmm now I met with his scheduler and we talked and she handed  me a20 page handout on what to expect with surgury ....man oh man ..I think the hard part is the 7 days with the catheter. Man cleaning and the care and all the pills ...wow I really don’t know which way to go now 

VascodaGama's picture
VascodaGama
Posts: 3044
Joined: Nov 2010

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

 

 

Steve1961
Posts: 250
Joined: Dec 2017

yes cancer was  found at the base right side .lhmm wife and I totally respect Dr. Carroll .put of all the drs I have seen he seems to be the most thorough ..but radiologist at Stanford was very thorough as well but stanford brachytherapy program 2 treatments over 2 weeks that means being put under twice and then 20 treatments of EBR  wow the heck with that ....  anyway Dr. Carroll the surgeon at UCSF did say it’s mt choice but he recommends 2 treatments of radiation mot one..I have emailed both brachytherapy drs told them the results of genomic testing and I asked if the game plan has changed ,I will wait to hear from them.....it sucks I actually asked 2 drs if we should get genomic testing done and they said not necessary ...REALLY NOT NECESSARY ....wow I think ira very necessary in making the right decision .....I am leaning towards surgury because I totally trust Dr. Carroll .i am just scared ..I shoiulsnt let being scared sway my decision  but it’s haard I have never been in a hospital or had any kind of ptubedure done ever ...

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

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
Posts: 250
Joined: Dec 2017

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 

MK1965
Posts: 179
Joined: Jun 2016

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

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

FWIW my urosurgeon discovered that my prostate cancer was a bit worse than expected and I had to have radiation within the first year following surgery. During the course of radiation I developed severe digestive problems. After the radiation (39 Tx IMRT) I had to wait six months before I could get a colonoscopy... which I just had day before yesterday. The outcome is that I am now diagnosed with acute radiation colitis or pelvic radiation disease (PRD).

It figures with my luck that after surgery left me with urinary incontinence that the follow up radiation would leave with a bowel disorder.  I'm still in the process of digesting (pardon the pun) the implication of this condition. But I just thought I would once again point out that all treatments have side effects.  It's not just surgery. Hormone therapy has them also. And of course, so does radiation.  There is very little information about it to be found online, and it isn't spoken of often, espcially by men. It is embarassing and unmanly. But it does happen.

Of course, we have all been confronted by people who tell you "my so and so had prostate cancer and he's doing fine". That's a topic for another discussion.

Steve1961
Posts: 250
Joined: Dec 2017

there are over 170 thousand men a year diagnosed with PC..there are 100s of  thousands out there that had surgury..how many people are on this form a few thousand ...I am sure that there are 100s of thousands of men out there that are just fine after surgury...If the only thing I lose is a hard on the i dont care ...sex isn’t a big deal to me anymore ...

hopeful and opt...
Posts: 2226
Joined: Apr 2009

RobLee,

I am sorry for the side effects that you are experiencing from more than one  type of active treatment..........too bad that the side effects from more than one  active treatments  can be cummulative. As VG says, "things must be done coordinatiely"...lto include lots of research before selection of treatment.

Steve...my hat is off to you....you have done lots of research at first class institutions about treating this beast......good luck  with your decision based on research...of course we are here for you

 

 

you.

Steve1961
Posts: 250
Joined: Dec 2017

starting to get ugly in my household ...wife is getting upset with me ...this last dr Peter Carroll supposedly the best at UCSF gave me the least amount of time of them all 20 minutes only ..my wife is convinced we should listen to him...well not so fast ..I am confused more than ever ,...UCSF looked at my slides as well as Stanford they both agree with the original report ...2 cores 6 ml and 8 ml with not more than 10% gleason  4 .....okayyyy to me that’s not bad ...now this dicifer genomic report gives me a score of .82 high risk ..first of all it showing my latest PSA 8.1 which it’s nit dropped to 7.6 ...and it’s sayIng that after surgery I hsve a 31% chance of spreading after 5 years and 18 % after 10 ...WTF ..30 % chance I wonder if that’s even with a clean pathology report ... this dr caroll also didn’t like how the Gleason 4 was fused and cribifirm type ....I mean why hsve surgury if u r going to hsve to radition ad well ....I emailed  both brachytherapy dr st stantord snd UCSF and ssked then to review the decifer  findings and as well as what UCSF pathology found and I am waitingto hear what they have to say about the genomictest resilts ...I have to admit I am nit tooo thrilled about having surgury 

VascodaGama's picture
VascodaGama
Posts: 3044
Joined: Nov 2010

Rob,

I am sorry for knowing about the RT side effects. As you comment in the post, six months is a short period to heal. I believe it can still improve naturally.

Look for diets that easily digest and allow fast healing of the colon. Can you describe the location of the colitis and other contents of the report?

Your comments have been helping many people in the forum. I hope you continue to tel us your story.

This is a difficult moment in your treatment. Just hung in there positively.

Best,

VG

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