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Newly Diagnosed - Gleason (3+4)

JoeDoe
Posts: 10
Joined: Feb 2017

Thanks in advance for the empathy and technical knowledge shown on this message board.  

My Situation:

55 Married, WM - Overall Good Health - No symptons.  Wife and two teenage boys.  Good Health Insurance.  Life Insurance,  Good Finaces.  Wife is upset but stable.  Kids do not know and will not until it is necessary.  Employer does not know but will have to inform at some point.  

PSA Began to elevate after HRT in 2013.  

2013 - PSA 3.2 - DRE Negative

2014 - PSA 4.1 DRE Negative - Referral to first Urologist.  Urologist counseled re-test and monitor

2015  PSA 4.3 DRE Negative - (Had Moved new PCP) - No Referral 

2016 (Dec) PSA 6.1 DRE Negative - Referred to Urologist.  Felt something on DRE.  Biopsy Ordered - Clinical Stage T1C

Pathology -  Gleason (3+4=7). 11 of 12 Cores Show Cancer varying from 30 to 80 percent (yikes) (Trying to be concise but can provide entire report tomorrow when I get home from traveling). 

In general, I am somewhat suspicous of Doctors but really like and respect this Urologist.  Upon announcing diagnosis he immeditely counseled me that his first concern was that I be comfortable with my treatment and path forward.  He would not be offeneded by going somewhere else or getting second opions. 

His recommendation (not surprising but what I've learned on this board) is a RP.  This practive has a DaVinci Machine.  I told him my concern was not being practiced on and wanted an experienced surgeon.  He said he has done 250+ and their results benchmark well against national results and better clinics (Mayo).  

He said his approach was to try to preserve three things (in order of priority).  Life, Continence, Sexual Function.  Was very upfront about side effects of surgery. 

I asked about radiation and he said that was an option and would be glad to recommend a radiologist and oncologist for a second opinion.  His opinion is that having radiation first made a RP extremely difficult and the standard of care for my sitiuation was RP and then assess once they get the pathology back on the lymph nodes and organ tissue.  

Based on above and several frantics days of reserach (including articles on MTOR, Rapimycin, and radiation resistant PC which are fascinating but way over my head) I decided to go ahead and schedule the surgey (they are about a month out - so early March) but still wanted to get other opinions and perspective. 

Best Regards,

JoeDoe

 

 

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

There are several options in two main categories, surgery or radiation.  Each one has it benefits & side effects.    I don't feel watchful waiting is an option with cancer but that's up to you. With a 3+4 and if the cancer is totally inside of the prostate you could go either way, surgery or radiation. I would talk to the oncologist to get his view and list of treament options, it not too late to change your mind.  Surgery usually has its side effects up front and gets bettter over time.  Radiation has usually very little side effects up front but can develope over time.  Either way there will be challenges to overcome after your treatment option. Neither the ED or leakage hampered my life style over my 2 yrs. + journey.   I chose surgery, had ED & leakage after surgery but after almost three years no ED and minor dribble after urination.  Get a surgeon with as much experience as you can find on the Davinci, it will pay off in the end.  I do not regret choosing surgery, I sleep well at night knowing that my prostate and hopefully all the cancer was removed in one shot.  I did not have to do any followup radiation or drugs.  My urologist also told me about the surgery being more difficult after radiation, don't know if it is but it sounds right to me.  Other people will chime in about which treatment option they prefer but in the end it's still up to you to decide, not anyone on this message board. Since you have already chosen surgery good luck, if you want to talk off line further send me a Private message and I can fill you in on the nity grity after your surgery.  Good luck on your journey to get rid of the bandit and get on with living.

Dave 3+4

 

Swingshiftworker
Posts: 1013
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!

MEtoAZ
Posts: 37
Joined: Feb 2016

I would echo swing.  I had CK in april of 2016 after doing a ton of research on the various options.  I was 52 but only had 2 cores (3+3 and 3+4) positive.  Today, my PSA is around .7 from 5.1 presurgery.  I am well ahead of the expected decline in PSA and I really haven't had to deal with side effects.   

The "standard of care" that your doctor referenced is established by... Urologists, who just happen to perform surgery.  The options are numerous and at your stage, most will likely yield similar results with respect to removing or curing the cancer.  Be careful when you hear the "you cannot do surgery after radiation" argument, that is crazy and seems so lame from my perspective.  One reason proposed for surgery is because of the long-term side effects of radiation (which varies wildly depending on the type) yet the same doctor will say, "if RP fails, we can always radiate", so doc, how confident are you in RP given the potentially serious side-effects I will have to deal with for some time...  at least your doctor did not say surgery is impossible after radiation as most do, he accruately stated it is just more difficult in that instance.  Make sure you do some research and understand the options around radiation.  If you go to a conventional radiologist, he should recommend surgery as you will likely have long-term issues at your age with conventional radiation that would come into play as you age.  CK is not the same as conventional radiation but if you do not go to a place that does CK, they will likely disparage CK, that was my experience anyway, with FOUR different specialists both Urology and radiation fields.  All the docs in the prostate cancer space make a living working on this cancer.  If you pick an option they don't do, they don't make any money on it.  That is not to say the doctors don't care, they just want you to choose them since otherwise, someone else gets paid. 

At your stage, whatever decision you make should yield a successful outcome.  The vast majority of men here in this forum did RP so it certainly is the most common approach and, just like doctors, we tend to tout our choices too! 

Based on my research on RP, I would say 250 procedures is not a very big number and it is easy to quote stats that are not easily verifiable like saying "we are better than Mayo", that's a pretty bold statement that I find hard to believe given the level of experience a Mayo doc would have to have to even be there.  I was scheduled for RP with a doctor that had done close to a 1,000 and I would want the to find someone who has approached that number if I were you and you wanted surgery.  My PCP actually gave me a list of options and didn't really recommend any and I checked out CK after reading on this forum, glad I did. 

Good luck with your research and  ultimate treatment decision.  Also understand, if you are going to have cancer, early-stage prostate cancer is certainly something you can successfully fight!  Congrats on keeping up on your PSA levels so that you caught this early. 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I suggest that you have an image test, one is a T3 MRi. This image test can show extra-capsular extension, that is if the cancer is outside the prostate. Other image tests are pet scans.

If the cancer is outside the prostate, surgery which is geared to cancer that is localized would not be effective , and another treatment choice will be necessary. The side effects of various treatment choices are cummulative.

With radiation, not only can the prostate be treated, but the perimeter of radiation given can be extended beyond the prostate, and is more inclusive.

Surgery has the most potential side effects of all treatment types, except Active Surveillance( you case does not warrent Active Surveillance, you require an active treatment).

Consider SBRT for which cyberknife and novalis among other machines t are able to provide this treatment..  I along with Swingshift workeer suggest that you explore this treatment type.

Whatever treatment type you choose, you want an expert's expert.  For surgery there is a very steep learning curve for robotic. ...If you choose surgery, I suggest that you do research to determine the best, there are a few in the USA that shine above others...ie surgical margins, number of surgereis, fellowship trained, etc.

 

JoeDoe
Posts: 10
Joined: Feb 2017

DIAGNOSIS:

l. Prostate, right apex, needle core biopsies: Prostatic adenocarcinoma, Gleasonscore 7 (3+4), comprising two out of two cores and 30-40% of the tissue submitted.

2. Prostate, right mid, needle core biopsies: Prostatic adenocarcinoma, Gleason score 6 (3+3), comprising two out of two cores and 30% of the tissue submitted.

3. Prostate, right base, needle core biopsies: Prostatic adenocarcinoma, Gleasonscore 7 (3+4), comprising two out of two cores and 70-80% of the tissue submitted.

4. Prostate, left apex, needle core biopsies: Prostatic adenocarcinoma, Gleason score 7 (3+4), comprising two out of two cores and 20% of the tissue submitted.

5. Prostate, left mid, needle core biopsies: Prostatic adenocarcinoma, Gleason score 7 (3+4), comprising two out of two cores and 70% of the tissue submitted.

6. Prostate, left base, needle core biopsies: Prostatic adenocarcinoma, Gleason score 7 (3+4), comprising one out of two cores and 30% of the tissue submitted.

JoeDoe
Posts: 10
Joined: Feb 2017

Thanks for all the advice.  I had not even heard of CyberKnife before.  That sounds like an attractive option.  

I think when I first got the diagnosis I assume I was like many and said "Let's get stuff out - now.  Schedule me for suregery".   I understnad I need to take actoin but am thinking I need to take more time and assess options. Surgery may still be the best option but it is not reversable. 

A couple of follow up questoins ...

1.  If Cyberknife does not get rid of the cancer (and PSA levels rise after), I assume further treatements and/or RP are still options.  (IOW, what options does CyberKnife take away.  If the answer is none, seems like a great option if you can always go back and have surgery).  What am I missing here ?

2. Are there any studies of the effectivness of Cyberknife (and survivial rates  5, 10, 15 years out for Stage 1 and 2 PC) versus RP ?

3. I am within driving distance (2 hours) of a Mayo Clinic.  Seems like I would be wise to get a second opinion from an Ocologist/Radiologist there.  They do both CK and RP and do a high volumne of business. 

Kind Regards,

Joe Doe

Swingshiftworker
Posts: 1013
Joined: Mar 2010

1) Like other methods of radiation treatment, CK kills ALL of the cells in the prostate -- good or bad.  It renders the prostate useless. It is essentially the same as removing the prostate w/o actually needing to cut it out.  I have not yet heard of a case of recurrence after treatment w/CK, where there was little or no risk that the cancer hs spread beyond the prostate capsule. 

As you have already learned, surgery following radiation is not a common practice for technical reasons BUT it simply is NOT necessary.  If there is any need for further treatment, CK or another form of radiation (like IMRT) could be used to retreat the prostate.

However, once the cancer has spread beyond the  prostate, all bets are off.  Localized treatment of the blader, rectum, seminal vesicles and other tissue nearby could still be done w/radiation but the likelihood is that the cancer has spread even farther would call for treatment w/ADT meds and/or chemo. 

The same thing applies when recurrence occurs after failed surgery, which based on what I've read and heard over the years seems much more common than failed radiation treatment.  When there is a failed radiation treatment mentioned, it seems that LDR BT was used as the primary form of treatment.

2)  CK has now been in use for over 10 years and there are a variety of published studies available.  Here are links to a couple of them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4150980/  and http://radonc.ucla.edu/workfiles/sbrt/prostate_sbrt_patient_info.pdf.

These and other studies prove that CK is statistically as effective as any other method of prostate treatment BUT it does some without significant side effects -- most notably ED and incontinence -- which makes it the safest and equally most effective form of treatment currently available for prostate cancer. 

Bear in mind that CK is not only used to treat prostate cancer.  It is also used for brain, spine, lung and other more serious and virulent forms of cancer where surgery is dangerous or impractical.  An extremely high degree of precision is required to administer radiation to such organs w/o causing collateral tissue damages and that is the main benefit of using CK for the treatment of prostate cancer as well.

3)  I was treated w/CK at the UCSF Medical Center in SF.  They can perform every kind of treatment available for prostate cancer.  I have no doubt that the Mayo Clinic offers the same range of treatments.  If they have CK there, I would strongly recommend that you speak to a radiation oncologist who specializes in that treatment BEFORE you submit yourself to surgery.  The risks of surgery really are TOO GREAT to undertake when much less potentially damaging treatments like CK are available.

Do your research and talk to a CK specialist.  Then decide which treatment would be best for you.  Good luck!

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3276
Joined: May 2012

Mr. Doe,

I think you got as many responses in a day as most guys get in two weeks.  You are the second or third new arrival here this week asking the most common question, "What does a guy do for low-threat PCa ?" The whole thread should be copied and pasted.....SwingShift has actually done so for his excellent summation on the subject, a smart move.

You asked directly if RP is an option if RT fails. The most honest and clinically accurate answer is "virtually never." My own surgeon is one of the few urological Surgeons in the Southeastern US who will attempt.this or other, lesser surguries on the gland following irradiation.  After the gland is irriadiated, it becomes very fiberous and difficult to manipulate.  Even my radiation oncologist friend with whom I considered RT agreed that this is the case, saying that the gland post-RT is analogous to a kitchen sponge that was left in a microwave.

BUT, this is a moot point, because no one would recommend RP post-RT anyway.  What would be the point ? Recurrence following RT almost definitely proves escape from the gland, so removing  the gland then would be for no good reason. RP is a potential best choice only when there is no extracapsular escape, whereas radiation allows for shooting  the adjacent tissues in a hope of randomly getting  the micrometastasis. Yet an addition complication is that even with T3 MRI it remains impossible for current scans to always know where the escaped cells are.  It becomes a huge crap shoot and educated guess in choosing what is best, and no one can give absolute answers with current technogy.

I say visiting Mayo is a good idea.  I can't imagine how it could hurt. You must speak with at least one experienced radiation oncologist somewhere; jumping in to surgery without doing so would be rash.

 Fractionated RT (IGRT, IMRT) is fully as effective as SBRT (Cyberknife), but requires more treatments, because SBRT is given in much stronger doses to achieve the same Gr ("Gray" -- unit of radiation), which usually is around 76 to 80.

Unlike some, I do not feel doctors are prejudiced to "selling" their particular modality. My experience was that each doctor was very honest in presenting  the advantages and disadvantages of each procedure. The doctors with whom you will meet will remain millionaires with or without your "business.".  I just see them as having more integrity than some others.  

The articles I've read have all stated that around the 200 count conveys strong proficiency with DaVinci robots.  

I chose DaVinci, and my surgeon had done around 900 at that time, which I informally calculated to have earned him a few million dollars.  He had no need to lie to me to get m e to choose DaVinci, and he did not do so. He was detailed and helpful, but in no way prejudiced or pushy; quite the contrary. These doctors are not car salesmen.

You mention "telling your boss." Most first-line treatments for PCa are quick and easy. If you use surgery, you'll be out of work two or three weeks, about the same for IGRT or even less if the radiation center is a short drive from home. -- you can get the treatments during a lunch hour and go back to work afterwards.  Cyberknife is easier still, and everything  can be finished in a week or so.  

Prostate cancer treatment for minor, nonmetastatic disease is relatively quick and easy, and definitely not a "death sentence."  It is only in cases of relapse that things become problematic.  I know, having had advanced lymphoma, and a scare regarding possible lung cancer also.

Bless your choice,

max

Steelchuggin26
Posts: 36
Joined: Mar 2013

Hi there, hate to hear the diagnosis of Gleason 7. That does make AS less likely, especially with so many cores positive for cancer, and some having upwards of 80% involvement with cancer.

 

I know in a post about gleason 6 cancers, I would not sway anyone one way or the other in regards to treat. But G 7 is a bit more aggressive, and does have a higher propensity to escape the prostate, though it certainly is not the worst one can be diagnosed with. 

 

A gleason of 3+4=7 and 11 cores positive likely puts him in the intermediate risk category, so treatment will likely be recommended.  Radiation and surgery are both options for this cancer. I would think either one would be a good choice, but in the case of G7 disease with so many cores positive, surgery is the best option here to be more sure that the cancer is not escaping the prostate.

 

With surgery here, you get the pathological stage, and full representation about the state of the cancer. Surgery can tell if it is actually higher grade cancer, can tell more precisely the extent of it. And with G7, I think many surgeons prefer to sample lymphnodes as well to examine for possible local metastasis.

 

I think with 11/12 cores positive, your cancer is likely to be involving both lobes, and this is another reason, along with the gleason score that I think surgery would be the best bet here.

 

And remember, if it was to return after surgery, radiation would still be an option, and could still offer a potential cure. As mentioned in another post, it is difficult to operate on an irradiated area, as scar tissue forms, and it becomes tough and leathery and this,makes cutting tissue difficult, though there are surgeons who can do it in certain cases.

 

PSA being under 10 is a good prognostic factor, and the 3+4 G 7 is much better than the 4+3.  Young age of 55 is extremely favorable. I think you will do well with whatever modality of treatment you decide on.

Will Doran
Posts: 207
Joined: Sep 2015

Joe Doe,

Sorry to hear of your diagnosis.  Know that you are in my thought and prayers.  All of our situations are different and thus we can only tell you what we have been through. 

In your favor, your PSA is still under 10.  However your Gleason is 7, and if you have 80% involvment, You need to get moving on treatments.

I was diagnosed in October of 2013.  Purely by accident.  I had an internal bleed that we thought was from an injury several years back.  They found my prostate cancer as they were doing blood work.  I had no symptoms.  When diagnosed my PSA was 69, and I had a Gleason of  3+4-7.  I was given the options of Robotic Surgery or Radiation.  I wanted the cancer removed.  So I went with the Robotic Surgery.  The Surgery was done in early December of 2013.  Post surgery showed that there was 40% involvment and there was one very tiny spot in one lymph node.  That spot was so small that it hadn't shown up in my MRI's.  I was listed as a Stage pT3bN1.  They said my cancer was aggresive (Gleason 7).  My doctors said they were going to be very aggresive and they treated me as a Stage 4.  The surgery was not the end of the treatments.  My PSA started to drop as soon as the surgery was done.  Then they started me on Lupron (Hormone Therapy) and then I had 8 weeks of Radiation.  Radiation to the prostate bed area as clean up.  My PSA dropped to <0.010 where it  stayed for almost three years.  They had my testosterone knocked down to 17.  Normal is 250 - 1,100.  Three years and two month later my testosterone is back up to 380.  Which is still low.   But, Feeling better.  My PSA has come up some, as expected, and as of last month it is at 0.145.  This was expected.  Now we are watching the rate of PSA rise.  If needed I will have to go back on Intermitent Lupron.

Make sure and know that having the surgery is not the end of treatment.  Depending on how aggresive the cancer is the treatments go beyond just the surgery.  Also be aware that there are other problems can occur from doing the surgery.  I don't just mean bladder control problems, ED etc.  Because of my muscle development and muscle mass from being a Road Cyclist, My surgeon (Dr. "M") had trouble finding the lymph nodes in my right groin.  He was in that area a rather long time.  My surgery was supposed to take about 3 hours. But, becasue of a birth defect , Abdominal Hernia repair mesh, and my muscle mass, the surgery took 5 1/2 hours.  My surgeon told me at 10PM the night of the surgery that I would probably develop a hernia in my right groin.  He said that was because he had to be in that area for a long period of time with the robot.  The left side is fine, because he did a mirror image with the robot and went right to those lymp nodes.  So, 1 1/2 years post surgery, We realized I had developed a Hernia in my right groin.  Plus there was a "mass" showing up in my MRI's.  That was a Fatty Mass (Name slips my mind) that sometimes occurs from injury done by surgery.  That "mass" never changed up to this point.  My Surgeon (Dr. "M") wanted to work with another surgeon (Dr. "K") and do a second robotic surgery and they were going to fix the Hernia and remove that "mass" at the same time.  However the Hernia Surgeon said after 5 1/2 hours with the robot in my body that was too soon and he would rather do the Hernia repair the open way.  The hernia was not causing a problem.  The opening was big enough that the hernia was going in and out without getting stuck.  So, we decided to wait on that repair. In the mean time Dr. "K" has moved to another city.   Well, a week and a half ago the Hernia acted up. My wife took me to the ER at 3AM on Jan. 27.  I had just been to my Urologist (Dr. "M") that morning and all was well.  They did CT Scans, and decided I needed surgery to repair the Hernia.  The Hernia was back in place, but I still had pain.  ER doctor (Dr. McK") called surgeon (Dr "H").  He came in at 4:30AM.  Checked me over and said I'd be OK and that he would see me on Wednesday, Feb.1.  He scheduled surgey for me on Feb.3. In the CT Scans, that "mass" showed up, but they checked all my other CT Scans and it had not changed.  My new surgeon said if the "mass" was in the area he would remove it while he was in there. However he said he would not go "looking for it"  Turned out that the "mass" was in the way to get the hernia repair done.  So, Dr."H" removed the "mass" and did the hernia repair.  He said the hernia was very large.  I now have two layers of mesh and permanent stitches.  Since the Hernia is repaired and that "Fatty Mass" is removed my bladder control problems have subsided.  Dr. "H" thinks the hernia and that "mass" were putting pressure some where and causing my slight bladder control problems.  My Urologist/Surgeon  gave his "blessings" for the Hernia repair.  However at this point he doesn't know we got the "mass/cyst" removed. He will learn that in three months when I go in for my next 4 month check up.  My urologist was sure that "cyst/mass" was a results of the surgery.  However my Chemo Oncologist (Dr. "S"- she has since left the area) threw a fit and wanted to put me on strong chemo of that "cyst".  We shot that down.  She was not happy.  But Dr."M" was right, and knew what we were dealing with from all of his previous experience. Make sure your selected surgeon has done many of these surgeries.   Also please be aware that all the radiation treatments can also cause bone density problems.  I am dealing with that at this time. I have gained bone density from supliments and diet, but had lost some bone density in my femurs, where the radiation hit.   I was put on Prolia for Bone Density by my new Chemo Doctor (Dr. "B").

So, study like crazy and know all the side effects, and possible complications that can occur while these treatments are going on.  One treatment can lead to something else and something else, as you can see from my story.  There is good advice in the posts above.  You will need to decide what works best for you and what you are comfortable with.

This is a hard battle but I'd do the surgery all over again, since I am now a three year survivor, and my doctors are still talking plans way off in the future.  Live each day as if it is you last, and enjoy the simple things in life. Sunsets, Snow Falls, Thunder Storms, Drives in the Country, things in Nature, and the Love and Support of your Significant Other" are very important. However don't give up, Fight like the devil and hang in there.  We are all here if you want to ask questions.  This is a life changing thing and many times it changes one's self  for the best.  Especailly when it comes to relationships with others, no matter what their sex, race, color or religion. You are in your doctor's hands.  I love them all.

Love, Peace and God Bless

Will

 

JoeDoe
Posts: 10
Joined: Feb 2017

Everybody's willingness to share their story and encouragement is overwhelming.  Many Thanks - May God bless you all. Hopefully your kindness and generosity will help others facing the same diagnosis.    

I think the suggestion of a T3 MRI an interesting one since the critical question is my case is whether the cancer is contained within the prostate gland or has migrated elsewhere.  Seems like that is critical to know before deciding.  However, I assume the MRI can only confirm that it has spread, since it cannot definetly say it has not. I have no idea if insurance will pay for this given diagnosis.  Seems like worth exploring though. (Action Item)

The articles that SwingShiftGuy gave me point to equally good results for low to intermeidate risk Prostate Cancers using SBRT over the first 6 years.  (Gleason 6 or Gleason 7 (4+3) PSA < 10).  I do like the idea of not having post operative complications and there are never any guarantees with RP or SBRT, it's all probability. 

The information presented at least makes me at least want to speak to a Radiation Oncologist and have him formally assess my case.  The point made about RP allowing for complete pathology is a good one.  However, if I know the radiation kills it do I necessarily need to know what it was?  It doesn't seem to drive the future treatment, your post-treatment PSA level seems to dictate that. 

Again, many thanks for all the kindness and effort spent on my behalf.  May it help others. 

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

Does cyberkife kill all of the prostate tissue as Swingshift workers says or just the tumor and very little tissue surrounding the tumor?  This is from the Cyberkife website:  "As the only system capable of delivering beams that move in real-time with 3D respiratory motion, the CyberKnife System significantly reduces the treatment margins commonplace with other radiation delivery systems.  With smaller treatment margins, the CyberKnife System focuses the prescribed dose to the intended target – not the surrounding healthy tissue. Radiation therapy, (as opposed to stereotactic radiosurgery), usually treats larger areas that include not only the tumor, but large amounts of healthy tissue, increasing the risk of possible complications. Patients are not required to be hospitalized during treatment and the procedure is almost always performed on an outpatient basis." 

I would talk with your oncologist and make sure the Cyberkife kills ALL of the prostate tissue and not just the tumor.  I wounder if in the future some of the healthy tissue left behind(if there is any) could turn canerous?  Just a thought.

Dave 3+4

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3276
Joined: May 2012

In response to Cleveland,

A major bragging point for Cyberknife since its inception is its microaccurate aim; how it kills only the progammed areas it is directed at, and avoids adjacent tissue.

Understanding that, it seems counterintuitive that it would also radiate borders.

While I am NOT studied in this area, every casual reference to second-line radiation to the prostate bed and sentinal nodes I've ever read here or elsewhere has stated fractionated radiation was used, not SBRT.  

Also, I would question the first sentence of the quotation provided by Cyberknife:  Three years ago, a radiation oncologist said he would use breathing-gated, 3-D IGRT on me if that were my choice.  What is cutting edge one year becomes passe' the next.

It becomes easy to over-analyze the choices against PCa.  Actually, doing so is fairly common.   The general facts regarding how well the different modalities work, and what side-effects each might have, and at what statistical liklihood these side-effects might crop up, are all already known.  This will not be overturned tomorrow by some new study, or next year.   Ultimatly, a guy just has to choose and go with what his gut tells him.  There is no perfect choice in treating PCa now, and probably never will be one.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

All methods of radiation used (CK, IMRT, BT, etc.) are programmed to kill ALL of the prostate tissue not just the tumor.

Lots of obvious reasons for this but primarily the fac that if you try to localize just the cancerous tissue and you miss some, it will continue to grow.  Better to attack the entire prostate as delimited by the capasule lining which can be easily identified in scans.  This has essentially the same effect as removing the prostate physically and is just another reason why radiation is preferably to surgery taking into the account the greater risk of temporary and permanent side effects following surgery.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

..with more aggressive cases, the perimiter of the radiation given can be expanded beyond the capsule lining, so that there is a better chance of cure versus surgery, with less possible side effects.

JoeDoe
Posts: 10
Joined: Feb 2017

Treatment Center Video (NYC) which discusses why Cyberknife affects less of the surrounding tissue (less margin than other radiation therapies).  Somewhat balanced presentation in that he talks about various treatments but still seems to be pushing Cyberknife. 

https://www.youtube.com/watch?v=XsGmMtCGptk

Fox News Video with Dr. David Samardi (Surgeon) claiming new meta-study suggests surgery outcomes twice as good as radiation for long term longevity.  Would love some opinions on this. 

https://www.youtube.com/watch?v=-AxdBgtGnCI 

Dr. Oz talks about options.  (1:35) Study shows no difference in outcomes between RP, Radiation, Watchfull waiting.  This seeems misleading. 

https://www.youtube.com/watch?v=ENHJrf1JmtA&t=230s

 

It is really hard to know the right treatment when there is so much conflicting information out there.  I don't think Doctors are intentionally pursuing a conflict of interest but it does seem that everybody argues for what they personal do as a service.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

a new patient under stress is put in a position to choose from various undesirable options for treatment, with limited knowledge, that can be conflicting.

SBRT 9 year study

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

The perimiter of SBRT can be adjusted, so if there is cancer outside the prostate, it is possible that SBRT can cure, while surgery would not. SBRT is very precise, actually more so than other radiations, so the SBRT  is very accurate.

(To be honest, this is the first that I heard about any difference in the margins of SBRT versus other radiation treatments)

.............................................

Just checked out " Fox News Video with Dr. David Samardi (Surgeon) claiming new meta-study suggests surgery outcomes twice as good as radiation for long term longevity."

I notice that the European Association of Urology is the source of this particular study. ...so I would think that the study would be biased toward surgery, and this is only one study..one has to look for a consensus. In addition, this study has been done in Europe ( and the dates of the study are not given----Radiation treatment has improved thru the years.  Additionally I am not familiar with the levels of radiation treatment in Europe, and how it compares with the USA where I am located.....)

As you might agree, it is difficult to comment on the study that has been referred without reading the the study.

By the way David S is a very good doc in NYC, and better than most, however there is another doc in NYC , who if I were to have robotic surgery, which I will not, is Ashutosh Tewari

http://www.mountsinai.org/profiles/ashutosh-tewari

I understand that he developed a procedure to avoid erectile dysfunction. ( had a typo...it's erectile dysfunction)

Joe, by the way where do you live?

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3276
Joined: May 2012

Joe,

I have not yet watched the YouTube regarding supposed superiority of surgery over RT as regards long-term suvivorship, but as hopeful and optimistic noted, numerous factors that must be known in evaluating such a work.  USUALLY, however, a study will clearly explicate its methodology, and what sorts of subjects were utilized, allowing a fairer interpretation of what was written.  

How current was the RT form or forms employed ? Were Gr levels equivalent to those used in the US ? What stage were the patients at ?  Were the RT and surgery patients at the SAME stage ?  Did the RT patients or the surgery patients receive any forms of anxillary or supplemental treatments ? (BT, HT, etc. In other words, compare apples to apples.)   Know also that "long-term" in oncology usually means ten years or more, whereas general discussions of survivorship ordinarily use five years as the most frequently referenced benchmark.  These things must all be precisely and exactly defined.

META-studies are usually compilation studies that glean the data out of all (or at least most) previous studies and then interpret those results with newly-applied statistical analysis.  If that is what Dr. Samardi is referring to, that in general would suggest that the work is more substantial than if it is not.

The sentence referring to Dr. Oz is putatively ridiculous, and I don't think even any of the guys here would regard him as an authoratative sourse for any study on any subject. I know that I do not.

 

JoeDoe
Posts: 10
Joined: Feb 2017

I live in the midwest within 3 hours of Minneapolis.   

So, there are many good options available.  Mayo in Rochester is about 2 hours away. 

JoeDoe
Posts: 10
Joined: Feb 2017

To build on some of the excellent thoughts of others.  This really is a time to reflect and appreciate what you have been given. 

Image result for Serenity Prayer

Image result for Serenity Prayer

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Many of us found that it's important to live in the present and look for and enjoy the positive things, large and small in life. One of the posters here, Rakendra , is very wise, and may post to this thread

I live in So CA. and drive on the freeway 2 to 3 hours each way for a visit with my doc . The best medical care is of paramount importance, and in my opinion it's worth traveling, and if necessary incur additional cost to have a  doctor with excellence  care for you. There is a difference in the results between the very  best medical care and  convenient average.  

You are doing well,  researching here. 

You might want to attend a local support group in your area. there is an organization USTOO that sponsors local support groups world wide...google them.

Now to relax with a CA wine.

 

JoeDoe
Posts: 10
Joined: Feb 2017

Opinions on Dr. David Samadi in New York ?  He volunteered to take me on as a patient.  His recommendation was that with the amount of cancer found to have a T3 MRI and Bone Scan and then if they indicated no spread - have the prostate laproscopically removed.   Would appreciate any thoughts 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3276
Joined: May 2012

Joe,

This post seems to essentially be a repeat of your question in you first-ever post.  If not, I missed something.  But of course there is no limit on how often one may ask any given question.

JoeDoe
Posts: 10
Joined: Feb 2017

Max, 

Apologized if I repeated myself.  The first post was not referring to Dr. Samadi who is in New York but my local Urologist.  I do now see that Optimistic said Dr. Ramadi was very good.  My apologies. 

I have family in New York City (Queens) and could possible stay with them while being treated by Dr. Samadi so was hoping to further validate anybody who had an opinion of his work.  He certainly is in the press and our conversation was very cordial but productive.  

My other option is Mayo in Rochester which also seems like a good option.  

Need to get moving .... but not be in a hurry.

Again, kind regards for all the valueable advice on this site.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Rakendra is another poster at this forum

My laymans opinion is that Dr. Samandi gave great advice to obtain diagnostic tests T3 MRI and bone scan.

If I was to have surgery, my readings indicate that Dr. Ashutosh Tewari is the best of the best for surgery. He is also located in NYC.

Above I referrenced a nine year study by Dr. Alan Katz, He is located in Flushing Queens. He delivers SBRT via a Cyberknife platform. He probably did the most Cyberknife procedures in the world. I recommend that you consult with him.

http://www.flushingros.com/our-practice/our-doctors

 

Kickin
Posts: 2
Joined: Oct 2017

I’m a healthy 55-year-old diagnosed as a Gleason 7. 

Three cores at 90, 80 and 60 percent. Appears to be contained  

My PSA never higher than 4.8   Currently 2.3  

Docs are encouraging open or robotic surgery.

Brother 3 years older had PSA of 27 at my age. Had open surgery, hormone treatment and radiation because cancer had escaped.  Doing Ok. 

Should I wait? 

Concerned about radiation effects in future. Lost cousin last year who got blasted with radiation in the 1970s as a teen for Hodgkins. She Fought cancer from her mid 20s into her mid-50s , all due to the effects of radiation as a kid. Not keen on getting self-induced cancer in 10 years. Also don’t want ED or incontinence. Brutal decisions ahead

any advice?

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Kicken,

I am sorry for your diagnosis.

First, you mention Gleason 7...there is a difference between a Gleason 3+4=7 and a Gleason 4+3=7; the Gleason 4+3 is more aggressive.....(the first number shows the cancer that is most prevelent.............which is yours? It is important to know, please share. If the Gleason is a 4+3=7 , a bone scan might be considered since each of the cores that is positive shows significant volume....( the american urological association does not recommend a bone scan for those with less than a gleason 8 except when it may be appropriate because of significant volume).

Did you have any other diagnosis tests?, digital rectal exam (finger wave in rectum) results, any image tests (results?), etc.

There have been significant improvements to radiation since the seventies.....radiation now is directed and improved, t and now has success rates comparable to surgery with less side effects than surgery. The radiation treatment of the 70 ties was 50 years ago and the treatment today is simply not comparable to the 70ties.

In your case, there is significant cancer found in the cores that were positive. There is a possibility that the cancer has escaped the prostate. There are image tests that may show if the cancer has escaped the prostate, ie 3T MRI and pet scans.

As you already know surgery can have significant side effects to include but not limited to erectile dysfunction and incontinence. This procedure is localized to the extent of the prostate so if the cancer is outside the prostate additional treatments will still be needed, radiaiton and/or hormone treatment. The side effects of each of these treatments are cummulative.

With radiation as a first (and hopefully the only) treatment, the perimeter of the the radiation can be extended beyond the prostate so that a greater area can be treated with cure. There probably will be less side effects than would occur from multiple treatments or even surgery alone.

One form of radiation, is SBRT. This treatment is done in 4 or 5 sessions with minimal side effects. SBRT is very precise, more so than other radiation treatment modalities. SBRT offers comparable cure to surgery without the major side effects. . ....as any other treatment, I strongly suggest that you find and "artist" who can provide this treatment..find a high volume center with lots of experience.

Here is a nine year study for your evaluation.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

Is your cancer a 3+4 or a 4+3? A 4+3 is more agressive than a 3+4.  Your imaging tests should give you a definite location of your cancer.  If it's deep inside the prostate then surgery could be a good option.  If it's very close to the outside edge of the prostate then you could do radiation in it's various forms or surgery. If it's escaped then radiation might be a better treatment.  Study all the info in this post plus other sources and make the decison on your treatment mode.  Don't be afraid to talk to multiple doctors and get different opinions.   Both surgery & radiation have side effects in various degrees.  Some people come out of surgery & radiation with very little side effects, some have more.  Depends on the facility, doctors, and how advanced your cancer is.  I know it does not sound very incouraging, but man it's cancer.  In my opinion you have to attack it with one of the various tools available today.

 

Dave 3+4

Kickin
Posts: 2
Joined: Oct 2017

The MRI fusion biopsy showed it is a is a 3+4 on the outside. 

When i had just had the scatter-shot biopsy they thought I was a Gleason 3+3. I had/have absolutely no other symptoms (PSA was 4.8) I went to an open surgeon known as THE best in my city. Has done thousands. He did my brother’s. After 15 minutes I had scheduled surgery that he said I should do within a few months. No imaging, good health, PSA <10 all my life. PSA tested for six prior years always below 3. 

I canceled about a month before the surgery because I thought I needed more information. 

Now I know more yet pulling the trigger is more difficult. Maybe this doc knew mine would progress like my brother’s but could not violate doctor/patiemy confidentiality?

Or is it the surgeon’s mantra: Steel to heal. 

ASAdvocate
Posts: 115
Joined: Apr 2017

I understand about the loss of your cousin, but there is almost no comparison of the radiation of the 1970's to the extremely focused machines and techniques of today. 

With your stats, you do need to have some form of treatment. SBRT or HD Brachytherapy are getting the best reports as far as efficacy and fewer side effects. Check them out.

 

CC52
Posts: 101
Joined: Nov 2013

Hopeful, Cleveland and AS are on point about researching other forms of treatment, especially SBRT. Oh - and that includes second and third opinions. And while there is value in a Dr's experience, I don't care how many "procedures"  Dr. X has performed - if I feel he or she is morphing into a hungry car salesman - I'm heading out the door.

Regards - CC 

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