Just diagnosed and confused about options

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. 

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.

Steve1961 said:

Cyber knife

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 ....

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.

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!

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.            

I'll be in touch shortly no worries.

cralco said:

treatment

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?

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