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Is second opinion recommended with Gleason score of 10?

engine99
Posts: 3
Joined: Feb 2013

I learned last week Tuesday I had an aggresive cancer in my prostate.  It started with my PSA = 12.30 on a routine bloodwork test for my insurance wellness program (new to me this year).  Biopsy of 10 samples taken, 5 from each side; my doc tells me left side gleason scores are 7's and right side are 10's.  He highly recommends complete prostate removal.  CT & Bone scans done last Friday show clean, so I have appointment with surgeon on the 21st to consult and schedule surgery.  I am opting to go with robotic procedure.

I was wondering if I am being too hasty with following the doc's advise?  Should I get another opinion? or with the agressivness dictate that I just get it removed?  I'm 61 yrs old and want to be around awhile yet.

Anyone have similar numbers and complete removal?  How bad are the side-effects on bladder control?  I've done some reading in this forum and now wonder if surgery is the way to go.

Thanks in advance for sharing any info that will help me in the next few weeks.

New member Ken.

hopeful and opt...
Posts: 1364
Joined: Apr 2009

I am sorry for your diagnosis.

The posters here are very knowledgeable and will be of help to you.

Here is one of the other thread that discuss aggressive cancer diagnosis. There are also other recent threads.

http://csn.cancer.org/node/243848

My non medical opinion is that you require additional diagnostic tests to see where you stand.

You need to a Medical Onocologist, the best that you can afford. There are about 50 in the United States that specialize in Prostate Cancer only.

Surgery is a localized treatment that does not treat cancer outside the prostate. There can be major side effects from surgery. If the cancer is outside the prostate , which is highly likely, you will still need to be treated with other modalities, radiation and hormone therapy. The side effects of all of these treatments are cummulative., so if you have surgery, you can suffer major side effects to include but not limited to eritile disfunction and incontinence. You will still to have other treatments, so the surgery would not be required.

There is a test, a MRI with a tesla 3.0 magnet that will give a good indication if there is cancer outside the capsule, extracapsular extension. If this test shows extracapsular extension , surgery in my non medical profession opinion is not warrented since it will not cure.

The bone scan is not precise and does not show invasion to the lymph gland  MRI with the very powerful tesla magnet will provide better information for you.. 

There are also other tests that you need to have.

So please , please do not have this surgery , do no t be hasty.

 

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ken,

Ken,

So sorry to read of your diagnosis.  I know you realize that this is a very serious condition.  As Hopeful and Optimistic so aptly pointed out, removal of the prostaste is appropriate when there is a high degree of confidence that the cancer is contained.  If prostaste cancer has migrated beyond the prostate, which is most likely the case with a Gleason 10 diagnosis, then removing the prostate will do nothing to stop the progression of prostate cancer elsewhere in your body.  The surgery also puts you at risk for a significantly decreased quality of life caused by erectile dysfunction because it is almost a certainty that they will not be able to perform nerve sparing surgery with such an advanced diagnosis.  Because of the wide margins the surgeon will probably want to take you may also experience increased risk of incontinence.

Please consult with other specialists.  Many surgeons will not perform surgery on a man with such an advanced diagnosis because they know it won't correct the problem and can only decrease quality of life.  You may want to ask you surgeon why he wants to remove the prostate if there is a strong likelyhood the cancer has progressed.

While there are certainly no guarantees with any treatment on a Gleason 10, there are certainly treatments that have less potential impact on your quality of life and are probably just as effective.

I strongly urge you to consult with a radiologist and oncologist.

Best wishes for success in this journey.

K

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ken,

Ken,

So sorry to read of your diagnosis.  I know you realize that this is a very serious condition.  As Hopeful and Optimistic so aptly pointed out, removal of the prostaste is appropriate when there is a high degree of confidence that the cancer is contained.  If prostaste cancer has migrated beyond the prostate, which is most likely the case with a Gleason 10 diagnosis, then removing the prostate will do nothing to stop the progression of prostate cancer elsewhere in your body.  The surgery also puts you at risk for a significantly decreased quality of life caused by erectile dysfunction because it is almost a certainty that they will not be able to perform nerve sparing surgery with such an advanced diagnosis.  Because of the wide margins the surgeon will probably want to take you may also experience increased risk of incontinence.

Please consult with other specialists.  Many surgeons will not perform surgery on a man with such an advanced diagnosis because they know it won't correct the problem and can only decrease quality of life.  You may want to ask you surgeon why he wants to remove the prostate if there is a strong likelyhood the cancer has progressed.

While there are certainly no guarantees with any treatment on a Gleason 10, there are certainly treatments that have less potential impact on your quality of life and are probably just as effective.

I strongly urge you to consult with a radiologist and oncologist.

Best wishes for success in this journey.

K

ob66
Posts: 218
Joined: Apr 2010

Because of my success with an aggressive combined approach, I would like to ask (not question, but seriously ask) what is wrong with surgery and then as soon as viable the use of lupron and radiation therapy. I know you and I come from different treatment modalities Kongo, but I was an 8 going in, and started with surgery (daVinci) but quickly (within 10 months) went to RT, and AUS800, and lupron therapy for two years....As you know I combined it with a complete dietary change (no red meat, no dairy, low sugar) plus continued vigorous exercise. It has been close to 4 years now, and I am at normal testosterone levels, with a non-detectable PSA with ultrasensitive testing (less than 0.02). I do not mean to imply my treatment modality is right for anyone else, but would give it consideration. It is working to date. I am alive. I am normal in all ways, physically and mentally, other than my time to time worries about the results of PSA testing.

Will I always be so confident. Heck no, I have cancer. But I am sooooo happy I had surgery---mentally I wanted it OUT of my body...RT would not have done that for me mentally. Again, not trying to suggest the road I travelled is the only road, or the best road, but it is to be considered with someone with such high numbers.

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Kongo
Posts: 1167
Joined: Mar 2010

Hi, Ob.

My primary point was that in my personal view Ken ought to seek a second opinion for a diagnosis as serious as the one he wrote about.  I believe that most urologists will agree that not only is a Gleason 10 very serious, there is a high probability that the cancer has spread outside the prostate gland and that some form of metastasis is ongoing, even at the microscopic level where it is not yet detectable by the conventional scans performed on Ken.  Removing the prostate will do nothing to curb the growth of cancer outside his prostate.  Men do not die of PCa within the prostate, they succumb when it attacks other organs and bones after it has left the prostate and evolves into the advanced stages of prostate cancer.  If we assume that in addition to the surgery, Ken will eventualy undergo additional radiation treatment and hormone therapy then it becomes more and more likely that his quality of life couldl suffer.  

A second (or third, or fourth) opinion will ensure that Ken has a full understanding of the potential ramifications and side effects of his chosen course of treatment.  I do agree that he should consider surgery as his primary urologist is recommending.  I also feel he should consider other courses of treatment as well.  Certainly there are success stories such as yours and I am so happy that your aggressive treatment course is working.  I have read some studies that indicate an aggressive course such as you underwent has potential for long term success.  I have also read opinions that question removal of the prostate for very high Gleason scores for the reasons I laid out in my response to Ken.  It is certainly a difficult choice and one that can only be made easier by gathering more information which, at this point can be quickly accomplished through second opinions by experts who practice forms of treatment other than robot-assisted RP.

In any event, I would urge any newly diagnosed prostate cancer patient, irregardless of the Gleason score, to seek second opinions.  

Best wishes, Ob, and I sincerely hope your success in battling this disease continues.

K

 

 

ob66
Posts: 218
Joined: Apr 2010

     I take it all is well with you. The big difference I have is not so much your recommendation to Ken, which I agree with entirely, but the fact that you and I had different degrees (numbers if you wish to call them that) going in and coming out of treatment. i have always had the impression that you were always comfortable with the treatement that you received as it related to your entry numbers. I also have perceived (and please tell me if I am wrong on this) that you were always relatively confident that you were not involved with an aggressive cancer because of your diagnostic gleason scores. My difference is with a Gleason 8 post op and Stage 3B, after a Gleason 7 pre op, I remember being so happy when my scans came back negative just so I could have surgery. I wanted it out of there for my peace of mind, even though radiation was greatly appreciated as an adjunct to follow. Had I not gone that route, and things had not worked out with RT and lupron alone, I would always have wondered.

     Right now I have great peace of mind that I have left no stone unturned, have done everything to fight this monster. I feel great about that and even better that it is working and working well to date. I realize it is not the route for everyone, but at 68 years of age then, incontinence and loss of sexual ability were small potatoes compared to potential death. That is probably more a mental outlook than a scientific treatment approach per se, but it has worked for me. Will it forever, probably not. But I sure know lupron works very effectively, and with little side effects in my body, if that becomes an eventuality.

      I have friends who have been treated in the past with Gleason 7 whose urologists treated from the start with surgery followed by RT and felt four years ago that this would be the wave of the future. My be overtreatment, but I would rather fire the bullet now, than wish I had later.

      Nothing but good wishes to you and all the great resources on this board. You are an unbelievable godsend for so many people coming in with anxiety that we all remember. I thank you for me and for them.

      Regards, Bob

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Bob, you are correct in that my diagnosis was low risk with a 3+3 Gleason and only 1 of 12 cores positive at 15% involvement.  I always knew that I had several options for treatment and that most of them offered high probabilities of success so I chose the one I estimated would have the least impact on my quality of life.  I feel very, very fortunate I was diagnosed with this set of conditions rather than something more aggressive like you or Ken are faced with.  

I understand the emotion that many men have when faced with a difficult diagnosis.  It was difficult for me even with a relatively simple and straightforward diagnosis.  I get the desire to "get it out of me" and I respect each man's informed decision about dealing with their individual cancers. Still, I feel strongly that men contemplating RP, even with an advanced diagnosis, should fully understand the potential for a significantly reduced quality of life following their surgery and weigh their decisions carefully.  Too often I think advising surgeons gloss over the QOL issues as they push to close the sale.  I know that was the case in  my own situation when three of the doctors I consulted with did recommend RP even for my low risk PCa.  There are other alternatives to RP for treating advanced cancer that in lay opinion pose a lesser threat to QOL which men should be aware of when they make their treatment decision.  Men have a right to know the full spectrum of the choices available to them and they should be presented in an easy to understand format where the pros and cons are laid out objectively.  

Today, the only way most men can really get a balanced approach to their treatment options is by seeking second opinions from other specialists and I feel strongly that existing insurance policies should afford men this opportunity without additional cost.

 

K

Swingshiftworker
Posts: 658
Joined: Mar 2010

Seems like one of the reasons many men like you (OB66) choose surgery is just that -- the desire to cut the damn thing out!

I understand the emotions involved but given the substantial risks of surgery, it doesn't really make much sense to do that for advanced (let alone early stage cancers) especially if the cancer has already spread and if less detrimental alternative methods of treatment are available.  

Samsungtech1
Posts: 350
Joined: Jan 2011

Ken,

You do not mention any MRI's or CT scans.  However given your stats I would recommend RP.  If it has spread you can treat it with radiation.  10's are bad.  Even though you are 61 I would recommend RP to start with.  Find out where it is and treat it as necessary.  Have they done any tests?  CT scan, MRI or anything?  You get into 10's it has spread. You remove the prostate and you remove the source.  I would imagine it has spread to the seminal vessels, and nerves.  Probably spread to bladder neck.  Just guessing, but hopefully you will find out with tests.  

I am sorry for your diagnosis. I hope I am wrong.

They have alot of treatments to keep you going.  I get HT treatments every 28 days.  I hate the shots, but that is what it takea for me to live longer.  Unfortunately you have to play the hand you are dealt.

Mike

engine99
Posts: 3
Joined: Feb 2013

Thank you all for sharing your experiences, thoughts, and well wishes.  I did have CT scan and Bone scan which is "clean" with no signs of cancer outside the prostate; I took this as great news.  I am now reading and learning more & more about possible treatments other than total removal as my doctor recommends.

I have a consultation appointment with a surgeon next week Thursday.  I am going to ask him many questions regarding his experience with robotic surgery patients and after treatment complications.  I am on the fence right now if I will commit to surgery or wait a few weeks to make decision as I am still gathering much information.

I live in Wisconsin, where it is cold, so I will be headed down to Florida next week Sunday to join my wife who is already there.  I plan on taking this 2-1/2 weeks time to discuss all what I have learned and we both can make the decision together.

Again, thanks to all for the information and I will post an update before I leave for the sunny-side of our great Country.

Swingshiftworker
Posts: 658
Joined: Mar 2010

I think a 2nd opinion on your biopsy slides and the recommended treatment options are both in order regardless of your Gleason score.

For a 2nd opinion on the biopsy, I recommend Dr. Jonathan Epstein at Johns Hopkins.  As for the 2nd opinion on the recommended treatment, I suggest you find someone well regarded w/in your community who is willing to discuss options in addition to surgery.

Good luck!

Swingshiftworker
Posts: 658
Joined: Mar 2010

Duplicate Post Deleted

Samsungtech1
Posts: 350
Joined: Jan 2011

Kongo,

I agree with you on cyber knife, but when. You get the 9-10's things change.  If we did a survey on people with high gleasons, and told no spread, I believe it would show most of us woke up with the same results.  The reason some Dr.'s do RP is to get it out of the body.  I believe they feel you will die a little bit quicker if they do not remove it.  When it is that high it has escaped.  With prostate still in body, you will keep producing testosterone.  I hesitated, but after researching everything I decided to go for it.  My tests showed clear margins.  Surgery showed it had spread to vessels, nerves, and bladder.  

Lower scores I would recommend Cyber-knife.  This high I believe it needs to come out. You get one chance to get it right, and all of us are different.  Hopefully, with guidance, most will make the right choice.

Jusy my opinion.

Mike

hopeful and opt...
Posts: 1364
Joined: Apr 2009

This document is the medical guideline index for staging , discussion , references and prostate cancer treatment developed by medical experts.

The document is available online from the National Comprehensive Cancer Network.

I have an older version of this document dated V.2.2010 so since it is not up to date it is best that  I not post information from it.

So instead of listening to us non medical professionals give our unprofessional opinions, I suggest that you obtain a current copy of this guideline, or ask your doc to provide the part of the guideline of practice that pertains to you., and discuss expected outcomes and side effects for each treatment type(s).

ob66
Posts: 218
Joined: Apr 2010

     Every guideline, document, book  that one can read is most helpful to coming to a personal decision for oneself. In addition to that, help from us "non medical" professionals is in many ways more comforting, if not less scientific. To know where one has travelled and what it has yielded can be most helpful to so many on this board. The compassion most often more than that given by "the professionals". So please do not discount the value of input on this forum. I have a scientific background. Go ahead and cite me source and address and I will check it. That though, is not the whole reason for being here.

     I would like to know who was good for you, what worked for you, what didn't. What are your worries? How can we help? Not so much me, for I am but one, but put it out there. Yes, there is some non professional question of what some/many doctors have recommended. But do you really believe there is one treatment, one modus operandi? I don't. Many ways seem to work. Some work pathetically. We need to know that. That is part of the decision process. I am unclear, but you seem to believe reading the most scientific literature is the best or only way to go. To a certain extent I agree with that, but to a great extent I do not. JMHO, and Cheers

hopeful and opt...
Posts: 1364
Joined: Apr 2009

I agree with you. There is always room for compassion and for venting if necessary. Additionally, it’s important for us to be aware of the “patient’s perception of treatments”.   

We want to know enough so we can monitor our medical teams, and this site is a good source.

However, I also believe that the literature developed by professionals needs to be the basic guideline of treatment.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mike, I applaud your research and and the progress you have had since your surgery and I respect your belief that men with high Gleason scores should have their prostate removed.  I don't agree with your opinion that RP is the preferred option for men with high Gleason scores although I think it is an option that ought to be considered along with other courses of treatment that may offer less risk of reduced QOL following treatment.  I do agree that at this point CK is not an appropriate course of treatment for an advanced cancer although other forms of radiation might be depending on the situation which, as you know, is going to be different for each patient.  I do not believe that there is any evidence that men with an advanced diagnosis survive longer following an RP than those who are treated with other means and from my reading I believe that most experts do not recommend RP for advanced Gleason scores.

To me it all comes down to making an informed decision and the "informed" part includes multiple consultations and individual research such as you conducted.  

By the way, testosterone is produced in the testes not the prostate so removing the prostate will do nothing to reduce testosterone production.  To eliminate testosterone men need to have their testes removed or undergo hormone therapy.

I do agree that CyberKnife may be an appropriate choice for men with low and intermediate risk cancers and that these options should be among the choices men consider when making their treatment decisions.  For advanced high risk cancers there are other options and men should consult with a variety of specialists to fully appreciate the courses open to them.

Best

K

caseyh
Posts: 63
Joined: May 2002

 

A recent study showed that all treatments have significant side effects, and that for low risk localized PCa all treatments are equally effective. For intermediate & high risk disease, survival differences increased substantially for men who elected surgery. Dr. Matthew Cooperberg, lead investigator of the study commented,."This is a clear signal to the physician community that prostatectomy should be considered for men with higher-risk prostate cancer” “In many cases, surgery would be part of a multimodal treatment approach, including adjuvant radiation or systemic treatments based on the pathology and early PSA response," added Dr. Peter Carroll, chair of the UCSF Department of Urology.  Carroll is senior author on the paper.   Brachytherapy combined with IMRT came in a close second. 

The study also found that the differences in impacts of surgery and radiation were most recognizable during the first five years. By year 15, the impact on functionality between the two therapies was about the same. Dr. David Penson, a professor of urologic surgery at Vanderbilt University and a senior author of the study commented that his research "tells you that if you get treatment there are a lot of side effects regardless of the therapy you choose."

It is most likely wishful thinking to believe that one treatment modality will bring a Gleason 9 or 10 to its knees. Dr. Caroll's comment as to a multimodal treatment approach reflects a growing body of evidence that this approach is as successful with PCa as it is with other cancers (breast cancer for example). Perhaps that accounts for the success of brachytherapy when combined with IMRT.  Clinical studies have been done combining chemo, radiation, and then surgery with very good results.  It has also been found that radiation is more effective immediately following surgery.  Many patients dismiss surgery knowing that if it fails, radiation will be rquired anyway but surgery also allows the physician to determine if the disease has objectively spread outside of the capsule.  This early information can be critical in choosing a multimodal approach,  Deciding on multimodal treatment further complicates the decision making process for the newly diagnosed patient, but it is important to get it right.

Hud13
Posts: 1
Joined: Feb 2013

Ken,

Sorry to hear about your diagnosis.  My husband was diagnosed at age 49 with a psa of 69.5 and final gleason of 9/10.  We got several opinions, including Sloan Kettering, who said they would not do the surgery.  We went to a few other doctors who siad they would do the surgery if it wasn't in his bone or lymph nodes.  Clear on both.  He opted for surgery.  PSA rose and then started to double within 6 months.  Radiation.  His PSA remained at .01 for 3 years after radiation and Lupron.  It has started to rise again and has been rising for about 2 years. Bottom line is he has gotten 6 years so far, there are side effects.  Not pleasant but livable.  He still goes to work everyday and is part of our family, family events and life.  I don't think he would have gotten this much time had he not had surgery and radiation.  We believe we are still looking at many more years.  So, I think it's best to go for several opinions and the do what feels right for you.  I don't think my husband regrets his decision to go for surgery.  He did total radical prostatectomy.  He did regain most bladder control, lost more after radiation, but still has pretty good control, just some leakage on standing, etc.  Still well worth the numbers of years he has gotten and hopes to still get.  Good luck with your decision.

Hud13

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