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Just diagnosed and confused about options

cralco
Posts: 7
Joined: Feb 2019

I am 57, just diagnosed, 4 cores with cancer found, 3 with gleason of 6 and one with 7.   I simply picked a dr in my plan, and he happens to a robotic surgeon, so his reccomendation was surgery.  I have an appt with a cyberknife specialist, and i am guessing he will reccomend that.   My concern with cyberknife is there is very little long term data with the 5 day heavy dose radiation, and i have heard there is an increased risk of bladder, ana and other cancers after 10 years.  At 57 i am concerned about that risk.    

 

How does one find out how good a dr is?  I don't think Yelp lol is my best approach.   I live in nassau county long island and affiliated with Winthrop hospital.

 

thank you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

cralco,

"What to do after initial diagnosis ?" is the most frequent question at this board.  Everyone has their opinions, and some guys agree with general truths, while others tend to be advocates for one therapy or another.

You are correctly doing the absolutely most basic thing now: Seeing both a surgeon and a radiation oncologist.  I for one do not think that most doctors are necessarily biased to sell their own expertise, because the oncologists I consulted with were not that way at all.  But they will make their case if your clinical particulars would be well-served by what they do.  You do not give your PSA trends, but your gleason numbers and level of volumetric involvement suggest intermediate disease.  If further testing strongly indicates no escape from the gland, then nearly any mainstream therapy would be suitable.  In general, if there is strong indication of escape from the gland, then radiation is a better choice than surgery, and I say this as a guy who had DaVinci R.P with great results.

Most radiation centers have cyberknife or its competetor from a different manufacturer Varian Truebeam.  Both are SBRT radiation treatments.  Almost all radiation oncologists do a variety of radiation technologies. Virtually any doctor who performs cyberknife will also perform IMRT and IGRT, or "fractionated" radiation, which is usually at between 76-80 Gray, over a period of about 40 weekdays (weekends and holidays usually off).  I would be suspicious of a rad oncologist who "only" did SBRT, since that narrows them to the point they are then reasonably suspect of selling a ware; a one pony show.

You noted that although SBRT cure data is known for the relatively short term, truly long term data is not yet really available.  You  mention some increased risk of bladder cancers over 10 years later, but I have never heard that discussed here.  I have read articles that speculated that the faster delivery over a much shorter treatment period might increase secondary cancer risks, but I have not read anything that proves that.   But regardless, there remains IMRT/IGRT. 

lighterwood67's picture
lighterwood67
Posts: 187
Joined: Feb 2018

Welcome to the oh crap club.  There are a lot of options that will be presented to you.  You have time to weigh them out.  I selected what I call the AT option (Active Termination).  I selected the RP Davinci procedure because my surgeon felt the cancer was contained.  In fact, he biopsied some of the prostate where he had concerns prior to proceeding with the actual removal. They removed my prostate; performed a bladder neck reconstruction; and pelvic lymph node dissection. I am 68; my gleason score 4+3=7; surgery 03/20/2018.  Be sure that you understand the potential side effects of the treatment option you select.  I can speak to the RP.  Initially incontnient; ED; urethra shortening (permanent)..  Coming up on my 1 year point.  I am fully continent;  I am weaning myself off of Viagra/Cialis.  I am able to have sex at this time.  More importantly,  my PSA is undetectable and there is no evidence of disease.  You are going to hear success stories and horror stories on this site.  But I can tell you this.  There are a lot of very knowledgeable folks on this site.  Much more than me or probably much more than I will ever be.  I have a lot of respect for these folks who day in and day out take the time to comment, provide insight into this cancer.  I can only comment on me.  I am the expert.  I experienced the surgical (RP).  I pass my info on as much as I can.  Just remember the decision you make for treatment is yours.  Good luck to you on your journey.

cralco
Posts: 7
Joined: Feb 2019

hi can i ask what made you pic removal over radiation, you mention that your cancer was contained, does that make a difference in the options?

lighterwood67's picture
lighterwood67
Posts: 187
Joined: Feb 2018

I spoke to a Radiologist at the same insitute that my surgeon is at.  The radiologist agreed with the surgeon in my case.  If the cancer is contained, then one option is to remove the prostate.  Also, they told me the:  " We believe that surgery is his best option given the fact that he has such a large volume of anterior tumor. Were he to have radiation, he would have to have combined androgen-deprivation therapy and we frankly believe surgery has less side effect long-term than a year or 2 of ADT plus external beam. I believe he can have bilaterally nerve-sparing because his tumor is anterior."  Please understand my surgeon has performed over 2000 RP's.  He graduated from Duke University.  He was over the Urology Department at Levine Cancer Institute.  I am telling you this because if you decide on the surgery, you need to try and find the most experieneced one you can find.  Ask a lot of questions.  Remember the decision is yours.  Feel free to message me if you need to.  I am going to my one year check-up next month.  Will let you know how that works out.

Clevelandguy
Posts: 429
Joined: Jun 2015

Hi,

Healthgrade.com should help you out, also see if your health care provider has any recommendations on doctors and hospitals. Just picking a doctor without any insight into their skill or patient rating would cause me concern. The way I feel if the cancer is confined to the Prostate then surgery in my opinion is a good choice. If it has escaped them some form of radiation treatment might be a better option. This is a very personal decision based on your clinical diagnosis and what YOU feel is the best for your life.  Take the time to do your homework and it should help you choose the correct path.

Dave 3+4

Steve1961
Posts: 220
Joined: Dec 2017

Here is my story short and sweet. I am the same ages you with almost the same diagnosis One year ago. If you look up Wynthrop cyber knife on Google you will see they’re shoving it down your throat. I was told by a Stanford  radiologist that cyber knife is just not there yet and not all places do cyber knife. I want to a radiologist in San Francisco Who specializes in radiation for prostate cancer in men only no other type of radiation does he doand he told me not to do any type of radiation I was too young he also said that if he was to get prostrate cancer that he would have it surgically removed. And then went to Stanford the surgeon there was excellent  he has done 2200 robotic surgeries. He also said do not do radiation because there is no Plan B which  quite frankly there isn’t. I should’ve set the date then I did a surgery and worked with my family and friends on the fear I had of surgery but I went on to look further at UCSF and after talking to their radiologist asking him tons of questions he convinced me into doing the combo  radiation treatment  which I should not have done .....with surgery yes there are two side effects one of them is ED to me personally I could care less about the other one is in continent which is not what you think is just leaking having to wear a pad for a maybe up to year big deal. After surgery you get a blood test in six weeks it should be below..01 Which most likely it will be and then my friend you are cancer free of course u will need to have a follow up blood test but until your PSA rises which  could be never you will remain cancer free and if it comes back you have that radiation in your back pocket. I chose the combination radiation treatment which supposedly does have great results but I pay for it now a lot of side effects and now I do have to worry about secondary cancers and I don’t even know if the cancer is gone as it could take years for my PSA to drop not a good feeling I personally have regrets  if you do the surgery just look up major hospitals in your area and look up the surgeons profiles make an appointment I was told to make sure that they have done at least 1000 of them if you find one that has done 1000 of them He most likely is a great surgeon good luck I’m sure you’ll be fine don’t go too crazy with the research or on this forum make up your mind just do it and do hopefully you won’t have regrets like me...also ally if people say take your time ...not true I waited almost 6 months only to find out at the 5 th month after the third path report the first one was all good second from Stanford all good third one from UCSF not good totally different saying  that I had aggressive cancer ... rare firm cribiform ..now I’m terrified and disgusted with myself ....

lighterwood67's picture
lighterwood67
Posts: 187
Joined: Feb 2018

I remember commenting on your posts when you started your journey.  My gut feeling is that you need to forgive yourself and all who have steered you towards the treatment you chose.  Give your body time to heal.  You make a good case for surgery, but did not choose it (for whatever reason).  So, continue to give us updates on the treatment option you chose.  And let us know how you come out.  I think in time you will get to where you want to be.  Good luck to you.  We have a common enemy.

cralco
Posts: 7
Joined: Feb 2019

hi, thank you for your response, although i you mention you had a combination radiation therapy, I've never heard of that, is is a combination of radation and surgury?    You also mention finding a dr who does many surguries, but how do you find that information out?

Steve1961
Posts: 220
Joined: Dec 2017

I did 25 ebrt and 1 high dose brachytherapy..

as for finding a surgeon that has done a lot .easy look into major institutions look at their bio see how many years experience they have alot of surgeons at major institutions  do quite a fewa weeek up to 4  that could mean 150-200 surgery a year .also ask them at the consoltation.ask them everything age experience how many they age done. Their success rate to failure rate everythinggggg ask a lot 

greenteaguy
Posts: 33
Joined: Feb 2019

I am a 66 year old in much the same situation as you are having been diagnosed in July with five cores Gleason 6 and one core Gleason 7 (3+4) all on the right side.  A CT and bone scan showed the cancer had not spread and the MRI showed a 98% chance the cancer will not spread.  I chose AS because of the negatives involved with of all types of treatments.  I will soon have an Oncotype DX® Genomic Prostate Test performed.  If the results are favorable then I will remain on AS for the indefinite future.  If the score is unfavorable I will seek to remove or kill the cancer.  In the meantime I have glady embraced a radical lifestyle change.  I am on a mostly plant based diet, faithfully exercise and flood my body with anti-oxidents and anti-inflammatories daily.  The fact of the matter is most people who have prostate cancer die from something else.  With that in mind I can live with it in my body because cancer is a symptom of a sick body which I feel can be corrected.  My suggestion is to not make a quick decision and do your own research if you are so inclined.

Tech70
Posts: 52
Joined: Nov 2017

My initial biopsy was Gleason 6.  Oncotype DX GPS was 19, which was very low risk.  Second biopsy was Gleason 7 and the Oncotype GPS score was not nearly as encouraging.  (I think the score was around 40).  The biopsy sample was sent to Johns Hopkins for a second opinion and the Gleason came back 6.  My urologist forwarded this information to Genomic Health and the revised GPS score came back 24, again low risk.  Don't know why the Gleason score affects the GPS score, but it seems it does.  I am 70 and on my second year of AS.

greenteaguy
Posts: 33
Joined: Feb 2019

The results of a recently released long term study of SBRT by UCLA look promising.
https://www.eurekalert.org/pub_releases/2019-02/uoc--sco020619.php

graycloud
Posts: 31
Joined: Jan 2018

I know your emotions are all over the place right now.  Breath, start your research to find the best prostate cancer treatment centers.  My husband was diagnosed fall of 2017 - 56 years old.  Initially Gleason 7.  But additional testing from John's Hopkins, Memorial Sloan Kettering, and Mayo upgraded to a Gleason 9.   His was caught early - with no involvement outside the prostate or lymph nodes.

After research, our decision was to go to Memorial Sloan Kettering in NYC (We live in the SE).  Dr. Behfar Edhaie was my husband's surgeon/oncologist.  At MSK, he had/has access to bladder specialist and ED specialist both pre and post surgery.   Robotic,  nerve sparing surgery was done 1/31/18 to remove the prostate, lymph nodes, bladder neck reconstruction, etc. 

My husband is doing great - he's cancer free!  Incontinence issues were temporary.  He walks 5-7 miles daily, weights 3 days a week, rowing, back to riding a bike now.  Super active.  ED issues - he's fine now.  As his doctor said, it's a process after surgery that takes patience and time for healing. 

Read my one year story I wrote a few days ago.

Do you research, talk with multiple high volume prostate cancer treatment centers.  Look at their protocols for pre and post surgery.  Our decision was not to go the radiation route/Cyber Knife. 

Keep the faith.  Stay focused on getting healthy and getting your body and mind ready to fight!

cralco
Posts: 7
Joined: Feb 2019

can i ask why you elected surgury over cyberknife?

mstoriop
Posts: 34
Joined: Dec 2016

Hello Craico.  I will not suggest any threatment options to you as that is your decision and whatever path you take will be good for you.  I did see your original reference to Cyberknife and with your limited input as to PSA levels and history your conditions seem similar to mine where I had cores at 3+3 and one fairly low volume 3+4 with a 3T MRI showing containment in the prostate and diagnosis of T1C.  I chose Cyberknife (SBRT) for my own reasons pretty much from the get go and baselined what I thought were it's advantages/disadvanteges to the other options.  I completed my 5 treatments of 36.25 gray in August of 2017 and so far have been blessed with virtually no toxicity after effects.  If you read here enough you will see that results of any treatment follow a bit of a curve and like the stock market past history is no indication of future results so I do feel blessed. As far as long term history which you mentioned if you do an internet search and it will not be hard to do you will find 5,7, 9 and I believe now a 10 year study by Dr Katz out of New York who is one of the original pioneers of Cyberknife.  What struck me in these studies is number one the absence of biochemical recurrence percentages being I think quite high. Number two is the linearity of the rectal and urinary toxicity numbers so overall in my peabrain opinion it struck me that there does not seem to a large percentage change as years go by.  Also you had referenced doctors pushing their expertise and I guess that may be a possibility but as Max said above and my experience with 5 different doctors, 2 surgeons and 3 radiation, I was pleased how much time they all took discussing all options.  I actusally had 2 of them spend more time on the options that were not their specialty.  Anyhow best of luck with your research and decision.  If you happen to choose Cyberknife and want more thoughts from me give a shout.            

cralco
Posts: 7
Joined: Feb 2019

Hi thank you for your reply, actually dr Katz is part of the group my dr is in (dr haas) as i am on long island and local to winthrop.   My psa went from 4 to 5 this year, so thats why i had the other tests.    I didnt understand your line about the absence of biochemical reoccurance percentages being quite high and the next line about lineartity (i guess my brain is smaller then a pea lol). i dont want to impose but if you were open to a conversation i can send you my phone number (not sure i want to put it here) but will put my email address  cralco@aol.com

mstoriop
Posts: 34
Joined: Dec 2016

I'll be in touch shortly no worries.

Georges Calvez
Posts: 229
Joined: Sep 2018

Hi Cralco,

Let me start by saying that this is not you or anybody; it is the averages found across many surgeons using different procedures on a lot of patients.
The outcome of each individual case is dependent on the skill of the surgeon but also the ease of the surgery, human beings are not machines; the nerves, prostate, bladder, etc can be juxtaposed in slightly different ways, the nerves in one case may be more delicate than in another, one person may heal quicker than another, there are many variables.
Even good surgeons have bad cases but bad surgeons have more bad cases.
These statistics are for your age group.
First up, incontinence.
Experience varies from almost dry in the first few months to very wet but 90% of men will be close to dry after a year.
You can help yourself with Kegel exercises before and after, some men feel they help with erections and orgasms as well.
Erections
If both nerve bundles can be spared then you are looking at about 60% able to get an erection after a year or maybe two although this is extremely variable and dependent on how good you were before, some men will get erections quite quickly, others look good on paper but that is where it stays.
If you were getting good erections on a daily basis and you are still regularly sexually active your chances are good.
If only one nerve bundle only is spared the chances fall dramatically, none then you will end up with close to nothing.
Orgasms
These can change dramatically, becoming more pelvic based, some men have no orgasm at all, others have painful orgasms or ejaculate urine if they have not taken a pee before.
Length
Not many surgeons will talk about this and experience does vary but chopping out a bit of the internal waterworks does not help the old fellah and you may lose around an inch or 2.5 cm in new money.
The long and the short of it is that urination and sex can become very complicated with various aids and implants available plus pills and injections, etc.
Any questions, ask away

Best wishes,

Georges

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