I kind of went through the same questions you are .Jan.2009 I found out my psa was 110 gleason 9.To make a long story short the doctors said the cancer was out of the prostrate and radiation was the only choice.MRI cat scans and bone scans were negative.I had to take ahormone shot and wait 90 days for radiation which was scheduled for aug.2009.In the mean time afriend of mine whose daddy died with prostrate cancer was talkig to his urologist about my case and the doctor called me and said the prostrate needs to come out because if cancer returns ther is not a chance for cure as you can not have radiation after surgery.He put me in touch with doctor at baylor clinic houston who said he would open me up but if it was in my lymph nodes he would close me backup .the lymph nodes were clear and he remved my prostrate.I really had no pain from the operation or side affects except I have not been able to have a erection.My psa after surgery was .01 but 2011 had rose to .06 and was told I would need salvage radiation so june 2011 had 35 radiation treatments with no side effects and really never felt I was getting radiation..My psa as of aug. 2015 was .011 and am doing good and feel fine.Hope you make the right decesion and pray you do fine.

I'm sorry for the confusion that you and your husband have faced trying to make a treatment decision

Here are my immediate thoughts on your experience so far.  Although there may be a conflict of interest in the recommendation of IMRT by the urology group, it does NOT mean that IMRT would NOT be a suitable form of treatment.  Also, even though your husband is at Gleason 7, you should not feel pressured to make an IMMEDIATE decision concerning treatment and, if you are uncertain about what form of treatment to choose, I would NOT rule out AS as a possible option.  Contrary to the advice you were given, I think that AS is an option precisely because of your husband's young age; at that age, he has the time to monitor his condition and make an immediate decision in the event his condition changes for the worse.

That said, there are a lot of other things that yor advisers did not present to you.  Did they properly advise you of the risks of surgery?  Did they tell you that your husband will probably be impoent for at least a year (during recovery) and, if the erectile nerves are excised (or accidentally damaged), possibily forever?  Did they tell you that when they remove the prostate, the visible length of the penis is shortened by an inch or 2?  Did they tell you that your husband will probably be incontient for at least 3-6 months but, if his urinary control never returns, that he may have to use diapers until an artifical uriniary sphincter implanted in his groin to regain urinary control? 

Did any of your radiation consultants advise you a CyberKnife (SBRT) or Proton Bean Therapy, which are currenlty the most advanced methods of radiation treatment used for prostate cancer? Between the 2, Cyberknife is IMO the most accurate and precise method of radiation delivery, which minimizes (but does not eliminate) the possibility of the most common side effects of surgery -- namely impotence and incontinence.  I and many other men on this forum have been treated very successfully with it.  I was treated in Sept 2010 w/CK and am in complete remission.  I was a Gleason 6, but men w/Gleason 7 have also been treated successfully with it. 

Before you make a final decision, I suggest that you closely investigate the risks of surgery and possibility of dealying treatment by means of AS and fully investigate the possibility of treatment via CK, PB and IMRT, which I do NOT think you have done yet.

Good luck!!

Caroty,

What you were told is accurate, based upon the substantial reading and consultations that I undertook several monts ago before choosing RP. Like Tim who responded here, I was concerned that if radiation failed, surgery is not usually NOT an option, and requires a specialist in doing post-radiation slavage surgery, which is reportedly a very tricky undertaking. That may be a long-shot worry, but submariners are taught from day one to "always have a backup system." My biopsy numbers were very similiar to your husband's (or even less serious), and my age is 58.

I would question two things you were told. First, da Vinci robotic surgery does by all accounts take a long time to become proficient at, but most commentators consider 200 and above to be enough to assume proficiency. I would classify "350" RPs as substantially experienced. By no one's stanards is a guy with 350 "inexperienced," although my surgeon had done over 900.  My surgeon told my wife and I going in that barring something very unexpected, he would be able to do erectile nerve sparring, and said that in fact, after surgery, that the nerve bundles were spared. Decades ago, doctors didn't usually even try doing this.

Second, IMRT is not new technology; any decent radiation oncology center is going to have had one for years now. It is wonderful, and with IGRT is the current gold standard, but it is not something that a center should have just installed.  Also, a Urology Group would not buy an IMRT machine anyway; only a Radiation Oncolgy practice would do that.   And an IGRT machine is probably no more expensive than a da Vinci surgical device, so that argument goes both ways.  

I recommend you get Dr. Peter Scardino's book, entitled Dr. Peter Scardino's Prostate Book (Avery Press, 2010).  Dr. Scardino is Chief of Surgery at SKCC, and the book compares all current first-line treatments in considerable detail, with the pros and cons of each.

Ultimately, since RT and surgery are virtually identical in the rates that they cure cancer, you just have to go with your gut instinct. I went back-and-forth between the two for well over a month before changing from IGRT to surgical removal. Of course, I could have debated the issue for another year, since most prostate cancers are so slow-moving.  But I was just going around in circles, and putting off the decision would have made me more miserable, not less.  I am pleased and happy with my decision, but sometimes wonder if the radiation would not have been easier. 

Good luck ! deciding on a first line treatment is probably the most common subject of discussion here lately,

max

Caroty

I am sorry for the PCa diagnosis. The circumstances involving this initial period is stressful and you need courage for dealing both; with the unknown of the disease and the business interests of physicians and institutions providing care.

According to your post above, I see that you are moving forward in the right direction. Crisscrossing the opinions is good but you should be confident that the diagnosis given to you are proper. In fact all the suggestions and decisions are based on those findings, and these could be “manufactured” as part of the interests of the parties.

At the end, it is your husband (and his family) that will make the decision, and such surely will be the best choice because there is no return. You are on the second month of this cancer journey and probably there may still be the need of additional information on his status and knowledge in treatment risks and side effects. Only then you should do that final decision.
You may feel it an “eternity” to get to the end but what you decide now will reflect in the future of your life. It is quite natural to PCa patients to take two to four months in researches to decide on a treatment.

Survivors above gave you excellent opinions. They may be confusing to you but they are valid and you should try to understand the meaning of each comment. You can contradict and inquire each one because nobody here would feel hurt for being contested. You are the sufferers and because of the young age (47 years old) your husband is at higher risk of losing the life style he is accustomed to and so deserved when we get this far. Guys in this forum will try to help you.
Do things timely and coordinately. Get second opinions from experts on everything.

I have a comment regarding his diagnosis. I wonder what took him to go to the doctor and follow with a biopsy. T1C is for cases where Cancer is found by needle biopsy done because of an elevated PSA. You do not comment about particulars of the diagnosis and I wonder if he has done a DRE, bone scan or MRI (image studies). I also would like to know the type of cancer and about any other particular found by the pathologist on the specimens (pathologist report). Was there any indication in regards to PIN or the presence of Hyperplasia?
In which basis does his doctor assert the “organ confined” classification?

What about the PSA, do you have its histology or a list of symptoms (urinary problems) or difficulty in ejaculation, etc. that your husband found to be unnatural?

I believe that the review of the slices is correct and his classification of Gleason 7 (3+4) is the grade to be used in any judgement. Gs7 is much higher than Gs6 because pattern 4 is for aggressive forms of cancerous cells which may be producing lesser PSA serum. Pattern 3 could be lower (grade 1 or 2 which classification is now obsolete and graded up by the AUA standards). PIN would provide a clue into the judgement of an existing form of indolent type of cancer. The PSA may be considered high if the cells produce lesser amounts or may be considered within the normal range if BPH were present. I wonder the percentage of grade 4 within the 84% cancerous tissue in the three positive samples.

Whatever treatment you may chose, only radicals provide cure (RP and RT). The risks and side effects should take prime consideration in the decision because they are real and nobody wants to be cancer free at the cost of getting an added illness and loosing the quality of living. In particular the young age patients. With RP you will lose the possibility in fathering a child. RT may cause late side effects. If the cancer is not totally confined, RP is unpractical to provide cure. In such case, the protocol of RT would also vary to target a wider field for radiation.

Cancer is serious stuff and cancer centres need to think about business. Some institutions prefer to be drastic with young cohort of patients, which condition are more prune to successful outcomes so that such a case may become part of their curriculum and sells promotion.

I am sorry if my post is still adding “fuel to the fire” but this experience of yours is typical at the initial period of investigation to all of us, survivors. Just hang on.
I would recommend you to prepare a list of questions for the doctors you are consulting. Include even the questions that may seem odd to you.

Best wishes of luck in your journey.

VGama

caroty said:

Prior to this, he really

Prior to this, he really didnt have any symptoms, although, looking back, he had to urinate fairly frequently (every 2 hours or so).  His prostate is only "slightly" enlarged.  I am not sure how they measure that.  What brought my husband to this point were gradually rising PSA levels, (2.6 2010, 3.6 2012, 3.8 2013 and finally 4.3 this past December).  We have been told by the Radiation Oncologist that the PSA levels may have nothing to do with his cancer.  However, because of the PSA levels, the cancer was found. His DRE was negative as well. My husband had an MRI but it was only on a 1.5 Tesla machine.  It was negative but he will be having an MRI on a 3 Tesla machine if he chooses surgery.  No one has recommended a Bone Scan thus far.  I am not sure what the pin is, but he had 12 core samples taken and 3 were positive.  The positive cores were in the lower 2 quadrants and lower left quadrant of the prostate.  Again, I am not sure if I am using the correct terminology.  Looking at the diagram they gave us (divided into 12 sections), that is where the positive cores are.  The Partin Table Results show 84% chance it is confined to the prostate, with a 15% chance of capsular penetration and a 1% chance of seminal vesicle involvement.

I know a further review of the slides is important.  We were going to send them to John Hopkins, who our urologist said is the best at pathology in this field, but they have to go to Sloan Kettering firstas we are meeting with a surgeon there shortly.  Sloan-Kettering will review them and we will have that opinion by mid March. Whether we then send them on to John Hopkins and whether our insurance would pay for same remains to be seen.

Again, thank you for your input.  We are optimistisc and grateful people and feel grateful for our problems.  Some people do not get diagnosed with cancers that, when diagnosed early, have such a high cure rate. Of course the side effects of treatment here are horrendous, but being alive has to count for something.  Thanks again!

 

 

 The American Urological Association does not recommend a bone scan for those with Gleason under 8, since the likelyhood of finding a cancer in the bones are extremely low

Of the three cores that were positive, what was the involvement , that is what percent of each core was positive, were they all Gleason 3+4=7 ?

Did the MRI that your husband had show any suspicious lessions in the prostate, were they in one lobe or two, how extensive?

 The prostate size is most accurately measured by the MRI. The size should be in the report

I wonder if Sloan Kettering will accept pathology review by Johns Hopkins? There is a good boy network among academic centers of excellence. You might wish to ask.

Caroty

Thanks for sharing the details. All the information at your disposal is practical and may be enough. I am glad to know about your positiveness in confronting this terrifying period in your lives.

I think you will be in a better position to commit to a decision after meeting Dr. Eastham. He may be biased toward surgery because he is a surgeon (very considered) but he follows the protocol of MSKCC which requires these specialists of considering the opinion of PCa radiologists at the same institution. I think it unnecessary to get still one more opinion from JH (at your decision). You could try getting the best out from this month meeting at MSKCC by inquiring about present findings and all possibilities of treatments. It will be very convenient for you to have at hand a long list itemized with the doubts and worries and questions and post treatment warnings, etc, etc.
You can even ask for a list of additional tests which at Dr. Eastham’s opinion would provide a better prognosis (in hand) for the moment, and counter actions your husband should aim at in a way of being better prepared for any future occurrence.

The matter related to the consequences of vasectomy in surgery (banking sperm) or ED (with nerve sparing if the location of the cancer permits such technique) a colonoscopy done before radiation to prevent consequences from ulcerative colitises, etc, is usually not investigated or discussed but these are important matters and they should be clarified before decisions.

I did RP at the age of 50 due to similar circumstances as those of your husband. The PSA was 22.4 which by calculating backwards would indicate a PSA similar to yours at my 46 years old period. I was found with a low aggressive pattern of cancerous cells (Gs5) but voluminous. My case was for micrometastases (when cancer does not form the typical tumour but spread into vast colonies) which are hard to diagnose or being detected in image studies. Your husband’s seems to be a type of cancer that does not spread much but concentrates in forming aggregated tumours. These have higher tendency of being localized when found earlier. I think you right when commenting about “…feeling grateful…” for finding cancer this early. However, earlier positive diagnosis which cases are highly curative does not signify a status related to the age of a patient. A guy in his 60 could also be diagnosed in an early stage of cancer with high possibilities at cure.

Young age patients in similar circumstances have more to lose in quality living because they have a longer Life Expectancy. That is where the risks and side effects from therapies gain its weigh in considerations.

Best wishes in your next consultation.

Wishing you both luck in this difficult journey and peace of mind.

VGama

caroty said:

Dr Eastham provided a different opinion

Update: We had a consult with the Chief of Urology at Sloan-Kettering, Dr. Eastham. We really liked him.  He totally shocked us though.  In all our consults with 5 doctors, one thing was agreed on by all- Active Surveillance (AS) was NOT an option due to my husband's age (47).  Dr. Eastham recommends AS!  Sloan-Kettering interpreted the pathology to indicate a Gleason 6 and the doctor is very confident in his pathologists.  With a Gleason 6 and all other factors considered, he thought AS was the best option. He said that no matter what any doctor says, you will never return to baseline after treatment for prostate cancer.  There will be some drop off, which obviously varies by individual.  However, if you can live with a good quality of life for 5 years before suffering that drop off, and the outcome of the treatment is the same, why suffer an an additional 5 years of side effects?  It is his recommendation that my husband have genetic testing done (90% of Gleason 6's have no genetic component per this doctor) in case there is a genetic component, in which case AS is not recommended.  If his genetic testing comes back negative, he will have PSA's every 6 months, MRi's every 18 months and another biopsy in 3 years. Dr. Eastham will follow him during AS.  We are just starting to absorb all this info but trust this doctor and we both feel that my husband would be in good hands under his careful guidance.  I will be looking into and researching the AS option now....

Caroty,

As a lay person who has been in an Active Surveillance program and has studied this treatment choice for the last six years I am somewhat knowledgeable ....By the way when I was diagnosed, I had a radiation oncologist  tell me that I had 8 weeks to make a decision about treatments that he wanted to sell me, or else....fortunately for me I also saw a world class surgeon as you have, who recommended AS for me....

At my "About Me" page I have documented the treatments that I have received, and provide source material for information. about AS.  You may find this of benefit, simply click my name to the left.

AS is not age dependent, there is a man who entered the same program that I am in at age 35

Each institution has a slightly different criteria for acceptance to AS treatment. For example at Johns Hopkins, they require two cores or less out of twelve taken that are positive, each of these cores with a 3+3=6 or less, and 50 percent or less involvement (percent of the core that is positive). The ratio of prostate size to PSA to be les than 0.15, with a PSA 10 or less. The DRE with no or minimal bump. They do a random biopsy every year.

In your husbands case the difference between review results of the two different pathologists can be a nuance, that is that your husbands results are in between the 3 + 3 and the 3+4=7. As your doc mentioned, a Geonomic test is worth having.

Please share more of your husbands pathology; of each of the threee cores that are positive, what is the percent involvement of each?

At Sloan Kettering, will the biopsies that your husband will undergo be random or directed by a MRI?

When will they do the first biopsy?

hopeful and optimistic said:

Biopsy..my layman's opinion only

Caroty,

Great that you and your husband have changed your diet for the better, as most of us here have.

Very good that his PSA went down, but realize that the PSA is an indicator only, based on trend. 

Your husband is only 47 years old; so if a Gleason of 3+4=7 might exist, he is too young for AS. He has had only one random biopsy, where although Sloan Kettering found only low volumes of 3+3=6 Gleason; a pathologist at a different institution found 3+4=7, which may or may not be true, but in my opinion, of concern. As you  know a young man with a 3+4=7 is not a candidate for AS. 

In my case about a year and a half ago, I had a second opinion of one of my cores, upgraded from a 3+3=6 to a 3+4=7, so my next MRI guided  biopsy was moved up from two years to a year. This is the advanced biopsy that I mentioned..basically they were able to go to the area surrounding the discovery of the 3+4=7. This biopsy showed that there was no cancer around this area, so my next biopsy is at two years. Now I am now 72, so I am in a different age category than your husband. He has to be a lot more vigilant than I do to continue with AS.

Caroty, if I was in your position, I would have a MRI guided  biopsy sooner than later....I would contact NYU ..........I would be very cautious at age 47. Your husbands biopsy was only a random one....and there was some confusion with respect to the Gleason score.

Caroly, I wish you and your husband the very best.

H & O

 

..a Gleason score of 3+4=7 is especially not good in such a young man. I would suggest a new, closer look to make sure that number is accurate. "Knowledge is power." I am 64, my urologist was not happy at all with my Gleason of 3+4=7 after biopsy when I was 62.