CSN Login
Members Online: 13

You are here

Recently diagnosed and new to the community

jv7f
Posts: 4
Joined: Mar 2017

I haven't spent much time yet reviewing the board, but I wanted to add my info and I would obviously welcome any guidance.

45 year old, PSA 4.1

Biopsied on 3/15/17

4 positive cores; Gleason 6 

Right Mid: 20% (perineural invasion)

Right Base: 3%

Right Lat Mid: 15%

Right Lat Base: 10%

Urologist was concerned with the number positive cores and recommends prostatectomy and I have a consult scheduled with different urologist who performs surgery, but I plan to explore other treatment options.  Thank you in advance for any advice!

John

Grinder's picture
Grinder
Posts: 219
Joined: Mar 2017

There are a lot of guys on here that can give you good advice on alternatives to prostatectomy. I got RP Davinci robotic surgery because my prostate BPH was out of control and had prostatitis recurring infection and same as you tested positive in four, but inactive. It has been a great success so far and the side effects minimal and getting better all the time. But the I checked my surgeon out on the Surgeon's Scorecard website which is available in this forum. I'll say it again whatever procedure you choose, you don't have to be afraid of getting the procedure... In my case, the biopsy was way worse than the prostatectomy. So you have already endured worse.

This forum is especially a good place for advice post-op as well, whichever procedure you decide on. Hang on, and some other guys will be on shortly to give you recommendations for alternatives to RP. Either way I am grateful we have these modern alternatives to choose from and their advancements since I first started having issues with prostatitis some 10+ years ago.

jv7f
Posts: 4
Joined: Mar 2017

Thank you Grinder...I'm glad to hear RP went well and you're recovering nicely!

My urologist obviously tried to sell me on the idea of getting treatment locally (central Virginia) rather than more prominent/bigger name facilities (such as Johns Hopkins).  I do intend to consult with a radiation oncologist...but I'm wondering if I should do that locally or look towards DC (where Medstar G'town has treated over 1,000 with CK) or look towards Richmond/VCU.

Throwing this out there for anyone...thank you in advance.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2749
Joined: May 2012

Your Gleason and PSA both suggests incipient, indolent disease. But the doctor is correct in the volume involved, as well as the perineural involvement (cancer entering the sheathing around the nerves in the prostate -- a potential conduit for escape from the gland.

Take your time and review options, especially radiation to do the job.  Schedule a formal consultation and review with a radiation oncologist, minimum.  I myself had DaVinci robotic, but studied RT for a long time, and know that it works well in most cases, with fewer side-effects usually.

max

jv7f
Posts: 4
Joined: Mar 2017

Thank you Max...can you share how you settled on the surgeon to perform your DaVinci RP?  Would you recommend meeting with the local radiation oncologist for the consult, or a hospital that has performed the greater volume of treatments?

Take care,

John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2749
Joined: May 2012

Jphn,

I get care at a large, regional medical center which is also a teaching hospital.  I went to their urology group (about 15 urologists) for my biopsy.  Each doctor has his own presentation on the hospital's webpage.  I chose the guy whose attitude and specializations suited me the best.  Plus, it ended up, he has the most experience:  At that time, he had done over 900 DaVincis, and the number now is probably closer to 1,100  (he averages over 4 a week).

The blurb is that a surgeon is regarded as "highly proficient" at 150-200 DaVincis. My guy could probably do a DaVinci RP watching YouTube or playing XBox.

Choosing a treatment type and doctor is part science and technology, and part just having a good rapport and trust of the guy doing the work. Part art, part science.  Do not choose a doctor just because "he does DaVincis."  That is not enough.   

The same is true with RT:  Absolutely you must meet the radiation doctor, discuss, and feel good about it. My wife and I discussed RT (IGRT) with a radiation oncologist we had met when I had lymphoma. The consult ran almost 90 minutes !  He was not rushing us, nor we him.  If you speak with a guy who is in a hurry, ask to speak with someone else.  Review the available doctors bio's, and ask for a specific person. Do not schedule for "next available," which is totally random.

max

hopeful and opt...
Posts: 2096
Joined: Apr 2009

John,

You want an "artist" the best in whatever treatment you select. If necessary I would travel for this goal.

I suggest that you ask for a 3T MRI. It is an image test that may show if there is extracapsular extension, that is, if the cancer has escaped the prostate. If this is in fact true, it will affect your treatment choice. For example radiation can be adjusted so that the perminter of the radiation can be adjusted to go beyond the prostate, thus being more curative for cases where the cancer is outside the prostate. 

Consder having a second opinion of your pathology by a world class pathologist since all treatment is based on this. Johns Hopkins is recognized as one, if not the best in this.

Attend local support groups for knowledge, and/or emotional support. ustoo is an international organization that sponsors support groups....check their site to determine a support group local to you

h

Clevelandguy
Posts: 247
Joined: Jun 2015

Hi,

Which ever treatment you decide on(radiation or surgery) get the best doctors at the best facilities you can find.  The latest technology along with a experienced oncologist & urologist(need to talk to both) will go a long way to getting you rid of the cancer.  Most the time if the cancer is within the prostate then either surgery or radiation will work, if outside the prostate then radiation/drugs might be a better solution.  The up front diagnostic work is invaluable in determining the agressiveness and location of the cancer so you have a clear direction for your treament.

Dave 3+4

Old Salt
Posts: 521
Joined: Aug 2014

Sorry you have to be here, but you are obviously thinking things over. Excellent!

As pointed out by others, all options are open to you. Take your time reading and talking to various specialists.

I (Gleason=9) was treated at (MedStar) Georgetown U Hospital (SBRT + IMRT) and have nothing but praise for the radiation oncology facility there (Dr Sean Collins and staff). Moreover, there's a Starbucks on campus...

Swingshiftworker
Posts: 1008
Joined: Mar 2010

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

 2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

 3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

 4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

 4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

 I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

 So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

 Good luck!

weasel56
Posts: 9
Joined: Mar 2017

I dont know of anyone who has done radiation for prostate cancer.  Everyone I know has had surgury and only one of them has fared well.  I need to look at this much closer.  My question to you is how do you know you are cancer free?  You still have a psa number dont you?  I was begrudgingly leaning toward surgury because a zero psa means no cancer.

Swingshiftworker
Posts: 1008
Joined: Mar 2010

How do I know I'm cancer free?

First, I had an MRI/MRSI 3T spectrographic scan done on my prostate a few years ago when my PSA levels rose 3x's in a row -- an indicator of recurrence -- and the scan came out completely clean.  The scan shows the location of choline which is a marker for cancer.  None found.

Second, since then, my PSA has consistently continued to drop and, as far as I know, has not reached its nadir yet.

That's the best anyone can do in determining if he is cancer free post-treatment and I'm satisfied with that.  I am back on an annual PSA test schedule, after previously doing them quarterly and semi-annually, and the next test is due in late Aug or early Sep, near the anniversary of my treatment in 2010.

We'll see what is again then.  Hopefully, it'll be lower still.

 

As for a "zero" PSA post-surgery meaning that you're cancer free, DON"T BELIEVE IT!

I can't count the number of men who have posted over the past 7 years that I have been on this forum who have said they had a "successful" surgery w/a post-surgerical PSA level near nil (it's NEVER really zero) but then later reported that their PSA rose to 1 or 2, were diagnosed with a recurrence and then had to have radiation treatment (usually IMRT) to treat the cancer again.

On the other hand, I can't even recall a single person who received radiation (usually CK or IMRT) to treat their cancer who had a recurrence and had to be treated again.  Doesn't mean there haven't been any such failures; I just haven't heard of any.

Take that for what you will but ask yourself this: Why do surgery when, if it fails, you have to do radiation anyway? 

That's the question I asked myself when I had to make the choice and I deciced that, apart from the many significant risks of surgery that I did not want to face, I saw no reason to choose surgery, if radiation would take care of the cancer without the need for further treatment.

It's your choice.  Choose well. 

 

jv7f
Posts: 4
Joined: Mar 2017

I'm consulting with a urologist in a couple of weeks who performs the robotic surgery, so I'll definitely ask if the open surgery is still even an option.  I'm hoping to schedule a consult with a treatment center that offers CyberKnife treatment around that same time.  Thank you for all the guidance!

Swingshiftworker
Posts: 1008
Joined: Mar 2010

Well, if you're going to go w/surgery, I think open would be the better choice in terms of increasing the likelihood of the surgeron finding and removing most if not all of the cancer.   And, if robotic is offered, there is no reason why open could not also be done.

Open, however, presents greater risks of infection and greater surgical trauma, which may prolong recovery but closed/robotic surgery, while reducing those problems, requires greater skill in using the equipment and can leave cancer undectected because it is not as easily seen through the optics used.

It's a Hobson's choice to me but that's your choice to make if you so choose.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2749
Joined: May 2012

jv,

There are few clinical reasons to prefer open RP verses DaVinci.  Complex cases or cases that would combine needed access to the bladder are among the few.  Open reportedly affords slighlty better access to sentintinal nodes, when there is reason to feel that a lot of nodes need to be removed for testing.  But if the doctors thought I was high risk for positive nodes I wouldn't use surgery to begin with. 

DaVinci is reportedly "better" in terms of pain mitigation,  but note that the word "better" is comparative, not absolute. I woke up post-DaVinci in recovery, and one of the first things I asked was "This is better ? Better than what ?"   The pain was substantial, plus I had a rare condition that caused intense bladder spasms, but that was fixed via meds within a few hours.  I have had over 20 surguries, so  I know what pain is.  Insertion of two chest tubes while conscious through 13 rib fractures, with no (zero) deadening, for instance.   Hell, I might be the world's authority at rating post-surgical pain.  My appendectimy (also laproscopic) hurt worse than the DaVinci, but the DaVinci was in the top five.   The incisions are small, but they have to go so far and stretch so much tissue to get down below the bladder (from above the navel to below the bladder -- that is a long travel.  Stretching is what always hurts the most following surgery, not the incisions.

Intense pain was over (for me) by the next day, and I walked out the next day.  Just be aware that "better" does not mean pain free.  But there are no free lunches in oncology, far from it.

max

Subscribe to Comments for "Recently diagnosed and new to the community"