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Newly Diagnosed

JC40291
Posts: 3
Joined: Jun 2019

Just found this website, and the wealth of info contained, in the past week.

In March my family Dr. referred me to a local urology group after my annual bloodwork returned a PSA of 4.79.  It had remained steady at 2.5 for several years.  Three years ago it rose to 3.45 then 3.85 the following year.  For whatever reason the lab failed the run the test last year.  This year it returned a 4.79.  I've had a DRE for each of the past several years with the only comment being that my Prostate is enlarged.  I should add that I am 68 years old and in good overall health with no symptoms of prostate issues other than the elevated PSA.  The urologist I saw did another DRE and said that one side of the prostate was harder than the other and scheduled me for a biopsy.  I should also add that my father and his two brothers all had Pca.  All were diagnosed in their 70's.  I know Dad's PSA was ~100 when diagnosed.  To my knowledge none had any sort of treatment.  All lived to be 90+/-.

I received the results of the biopsy a week ago.  Out of 12 cores taken. 5 showed Adenocarcinoma involving 15, 20, 30, 30, and 40% of the core; 3 were reported as beneign, and 4 were reported as highly suspicious atypical.  The 5 that showed Adenocarcinoma were scored as Gleason 6 (3+3) and graded as Group 1.  The positive samples were from both the left and right mid, lateral, and apex. The base samples were all clear and scored as "0".

I do not see any reference to the prostate's size or any other info on the Pathology report.  I have a meeting scheduled with the urologist on the 27th.   From my limited conversations with him pre and post biopsy I suspect he is pro-surgery.  That is something I would like to avoid if at all possible.  Not sure whether I would qualify for AS.  I have looked at both CK and HIFU which are available locally.  Standard radiation treatments are not much of an option since it would require a daily 100 mile roundtrip for up to 8 weeks.  I would like to avoid BP due to the exposure to nieces, nephews, and grandkids.  As suggested in several other posts I plan to get at least a second opinion. 

Any comments on the above info or questions I should ask the urologist are appreciated. Also if anyone can recommend a good urologist for a non-bias second opinion in central KY I would appreciate it.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi JC,

Sounds like you are going to go the Cyber knife route which is fine, hopefully some of the people that have gone that route will chime in.  The American Cancer Society has some good info on line for all of the different types of radiation and surgical treatments. At 3+3 you have some time to study to pick the right treatment for you.  You might want to look into Proton radiation which is similar to CK but has a set focal length so the radiation does not go through your body like CK does which could effect other tissue. Proton is not available every where so it might not be available close to you.  The Mayo clinic has some good info on Proton radiation. Cincinnati, Ohio and Tennessee (Nashville & Knoxville)have Proton machines.  Good luck and check back-in with any questions.

Dave 3+4

JC40291
Posts: 3
Joined: Jun 2019

Thanks for your reply Dave.  I have looked at the Proton radiation and it would seem to be preferable to CK or other radiation treatments even though it is probably a little lacking in any longterm data.  I'm about midway between Cincinnati and Nashville so either could be an option.  I'll look into both.   I'll also look into the Mayo info.  I don't believe they have a machine in Louisville yet, but I can ask the question when the opportunity presents itself.  Thanks again.

John

mstoriop
Posts: 37
Joined: Dec 2016

Hello JC.  Except for your family history and a possibly enlarged or slightly hard spot from your DRE we are not too far apart in your current diagnosis and age.  I had neither of those but my PSA went up fairly steadily at right on .5 per year until I reached about 4.2 to 4.5.  I was sightly out of the range of active surveillance which would have been my first choice so I consulted with several Uroligists and Radiation Oncologists.  I did choose Cyberknife and am very close to 2 years out from my last treatment.  I have been truly blessed with really virtually no ill effects and wish everyone couild be so lucky.  There are several posts on this site with some folks staying more current than I but you will notice common threads including getting a second biopsy opinion, usually from Johns Hopkins.  Was $250 bucks straight out of pocket two years ago. Also 3T MRI is a good tool.  I have seen reference to some sort of genomic testing that others here seem to know quite a bit about.  Had I known about this or had it been available 2-1/2 years ago when I embarked on my due diligence I personally would have been all over it.  My advice is, as you have noted, seek consulatation with as many doctors as you can seek out.  It does seem that you have time to study.  As far as your location and treatment options I don't know your flexibility but I am close to St Louis not that far from you.  There are two Cyberkife capable facilities plus other radiation treatments available.  There is one hospital here with a very high class cancer treatment center.  I did not seek treatment there but had a very insightful and well appreciated consultation.  They have a large Proton Beam section and at the time were performing clinical trials mostly associated with cutting down the visits and increasing the Gy's per session.  If any of this seems to be something of interest to you I will be more than happy to provide the info I have although maybe a little dated now.  I wish you the very best of luck and your decision will be right for you.      

VascodaGama's picture
VascodaGama
Posts: 3015
Joined: Nov 2010

JC,

I believe you have done some more exams apart from the DRE, biopsy and PSA. Can you share info on any image study?

Your above post regarding the choice of radiation seems to be a decision dependent more on convenience than on the real situation of your cancer. I think you should investigate further to get a more precise clinical stage before deciding on type of therapy. In my lay opinion the high percentage of cancer in the 5 positive cores together with the positive DRE signals probabilities for extraprostatic extensions. Surely CK can do the job in localized cases but when the cancer has spread to local lymph nodes then a combination of CK plus IMRT may be more appropriated.

Gleason score 6 has many faces. Not all Gs6 are low aggressive. Apart from that independently of the aggressiveness of the cancer, those malicious ones living in the tissues away from the gland may lead to recurrence latter years. I think that you should try to locate the bandit and then follow a therapy proper to deal it a blow. You can then decide on the one most convenient to you.

Regarding your concern with the effect of the radiation (accumulated in your tissues) that may be harmful to your family (nieces, nephews, and grandkids), you may follow your wishes but I think it negligible. Firstly, the radiation is directional and modulated to minimize damage to surrounding tissues/organs, and secondly, the total radiation intensity (Grays of absorbed radiation)  is delivered in a number of sections (divided into doses) so that it doesn't become harmful to the patient. The impact of reflected radiation within the body is also minimal. The high dose is all delivered to the spot aimed which is the prostate gland plus one or two millimeters of allowance in the surrounding tissues.

I think you doing well in getting second opinions. Urologists tend to recommend surgery as they follow the guidelines of their association (their trade). CK and surgery are typical therapies for contained cases when the aim is to treat the gland.

Best wishes and luck,

VGama

 

JC40291
Posts: 3
Joined: Jun 2019

I had my post biopsy consultation with the urologist this past Thursday. After reading info on here and other reliable websites it went pretty much as I suspected.  I was surprised that as a surgeon he did not encourage me in that direction.  HIFU was out since very few insurance companies and Medicare are no longer footing the $25K bill.  He did not recommend seeds because of my exposure to small children and pets.  Proton therapy is not available locally and with the same number of treatments as IMRT it would not be practical to travel.  I was initially interested in CK but the larger dose / longer duration of radiation per treatment is a bit concerning.  He also mentioned (whether true or not) that CK has not been used for a large number of local prostate patients.

In the end he was leaning towards treatment with IMRT, if I wanted to pursue treatment at this time.  However, seeing that I am GS 6 and lower PSA (4.79) he said he would not be opposed to AS even though I was showing 5 cores with various levels and 6 suspect cores.  The only requirement was that I had to stick religiously to the program.  Apparently he has had a lot of people on AS and it's years down the road when problems start occuring that he hears from them again.  He is also sending the biopsy slides for gene testing.  So his thinking could change if he sees something in the genetic report that concerns him.

He did suggest something in addition to the AS.  This particular urology group is participating in the ProVent Clinical trial of Provenge for low risk early term patients.  That is something I am looking further into.  I had a brief conversation with a member of the research team that was encouraging.  Messing around with the immune system does give me pause for concern.  The fact they have been doing basically the same program with high risk patients for a number of years does help.  And for what it's worth, the drug does have FDA approval.  They have had people in the trial since last fall.  The only side effect they have seen so far is a few complaints of flu like symptoms after the 2nd infusion.  If any members have any experience with the ProVent trial or the immunotherapy drug Provenge I would be interested in hearing from you.  I have an appointment with the local clinical team scheduled for the 18th of next month so there are still several weeks to look into this further myself.

Thanks to all for your feedback.

ASAdvocate
Posts: 116
Joined: Apr 2017

The warnings about small children, etc., after brachytherapy only apply to the low dose protocol . It does not apply to high dose (HDR-BT).

There has been a significant upgrade in HDR-BT technology, and I recently heard the chief radiologist at a large hospital speak very highly of it.

if you want a proven non-surgical treatment, HDR-BT deserves your attention.

VascodaGama's picture
VascodaGama
Posts: 3015
Joined: Nov 2010

JC,

I think you doing well in researching and getting opinions on treatments but you should have a reliable clinical stage where to base the options, otherwise you may be looking into something that would not do the job you expect. I wonder if the surgeon consultant thinks that your cancer is not contained (risk for existing extraprostatic extensions) and therefore recommends radiation or if you have told him that you wouldn't do surgery, giving preferences to other type of therapies.
This time you have discussed about AS and Provenge but again, you still have no certain clinical stage to direct your decisions.

AS is the best option when we have a clinical stage T1 N0 M0. Provenge is recommended when we have T4 N1 M1. Which one is yours?

Surely your final decision will be the best but you need to be careful while navigating these rough waters. At 68 you are young and want to continue a healthy life style. You do not want to embark on something that will change your quality of life due to the side effects from a treatment that did not work.

Provenge is costly (90,000 USD) and it has no particular successful stories to claim it to be the choice to earlier cases. It is a systemic type of therapy covering the whole body and therefore affecting the patient's immune system of survival. Instead of Provenge one may go through the monoclonals known to work in both pathways; those to switch off the impeding resistance of cell's surviving mechanism and those that propeller death of certain cells (prostatic cell in our case) aimed by the therapy.

The genetic test will provide some clues on the type of resistance of the cancerous cell to certain drugs (hormonal therapy). It may link you with non aggressive cases but it does not quantify the aggressiveness or the extent of your case. In any case it is good to gather many data and info from tests and exams to more precise judge the status of the patient.

In this site you find the meaning and value of the clinical stage in prostate cancer matters;

https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/staging.html

I would recommend you to get a second opinion from a medical oncologist.

Best,

VG

 

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