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Recently diagnosed with Gleason score of 9

SV
Posts: 56
Joined: Sep 2010

My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

SV,
Welcome to the forum and sorry to read of your diagnosis. I'm at 13 months post Davinci and doing great. My PSA was 7 (4+3) pre surgery then changed to 7 (3+4) post surgery with some type 5 cells spotted.

I'm not in the same boat as you are but will give you some words of advise that my wife gave me. "remember that those posting on the web are usually the ones with more severe problems". Yes, I've read the horror stores on Gleason 8, 9 and 10's. And also all the bad cases of urinary problems and sexual problems. Just remember that unfortanetly those with good news tend not to post.

I know of one man local with a Gleason 9, diagnosed about 1 year ago and probably about 6-8 months post surgery. Last time I spoke with him he was doing well (June time frame).

He was going to be also starting radiation as a follow up following his surgery due to some spreading that was noted during surgery.

I've read good things about the City of Hope.

Also glad to read that you have a supportive girlfriend. Please keep us posted on how you do. I enjoy this forum and look at it everyday though I've backed off some from responding to everyone as I used to.

Larry

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

SV,

I'd like to add my welcome to joining the forum and wish you nothing but the best as you grapple with the many decisions and procedures you will face in the coming months. You seem to have a very positive attitude and a supportive significant other which makes a big difference in successfully fighting prostate cancer.

I realize you have made a choice with your doctors on surgery in the near term. As you may be aware, there are some conflicting expert opinions about surgery versus radiation for high risk cancer and a recent thread in this forum pretty much plumbs the depth of that well. If you haven't yet looked at it, it might give you some additional questions to run by your medical team in the coming weeks, particularly when you weigh long term quality of life to statistical differences in survival times.

SV
Posts: 56
Joined: Sep 2010

Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

Awesome attitude, SV! I am two weeks out from my surgery and so far so good. Keep up the meditation, diet and positive attitude - you will do fine!

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

SV, I am also in Southern California. The proton treatment you mentioned in SOCAL is performed at the Loma Linda Medical Center and I consulted with them for my lower risk cancer and do not know if it would be appropriate for your stage or not but I found them very informative when discussing it with them on the phone before my appointment.

I had a SBRT radiation using CyberKnife (Gleason 6, Stage T1c, 1 of 12 cores positive, PSA 4.3) but mostly they do CK in low or sometimes intermediate risk cancers, although it has been used as a boost to IMRT radiation at a limited study out of Georgetown with positive results for men with advanced cancer.

And FYI, many men who have had radiation have also gone on to have their prostates removed, although it is a more difficult procedure and the likelihood of increased side effects is a big problem. A doctor who tells you that radiation precludes surgery at a later date is not giving you the whole story. Radiation does cause some scaring, the degree of which is a function of the method of radiation delivery and dosage. It may be more difficult but it is certainly doable and there are surgeons who specialize in this area. In more modern techniques such as SBRT, Tomography, and IMRT, scaring outside the prostate is much, much less of an issue.

You don’t give the dirty details of your biopsy other than the Gleason 9. Was it a 4+5 or a 5+4? How many of the cores were positive and what was the percent involvement? Was there evidence that prostate cancer had gone beyond the prostate? What was your PSA at the time of your biopsy? Do you know the size of your prostate? All of this leads to a critical question: What is the likelihood that the cancer has moved beyond the prostate? If cancer has spread, why remove it? Cancer within the prostate won’t kill you. It’s when it moves to other organs that it kills you and removing the prostate will not curb the growth of cancer in other areas. Additionally, removing the prostate for a more advanced stage cancer would most likely increase the chances that they would not be able to spare the nerves and they might have to cut closer to the bladder which could significantly impact quality of life with respect to sexual function and urinary continence. They really won’t know that until they’re in the middle of the operation. And while they can certainly do radiation after RP (and in your case they probably would), the procedure increases the odds of developing further sexual or incontinence problems.

While a PSA of 5 which you mentioned in your first post is not that high in and of itself, as prostate cancer becomes more advanced the cells become less and less differentiated (one of the ways they determine your Gleason score) and they produce less PSA so a relatively low number is not inconsistent with advanced cancer.

You seem to have fast tracked on a surgery route shortly after your biopsy. I would urge you to consult with a radiation oncologist that specializes in prostate cancer to get a different perspective to consider because you won’t get any do-overs on your decision. While City of Hope seems to push DaVinci robotic surgery, it also offers TomoTherapy in conjunction with IMRT which, from the City of Hope web site, has fewer side effects. Did your doctors schedule you with a radiation specialist at City of Hope or did you rule them out because of some other reason? I would also ask about hormone treatment followed by HDR brachytherapy, followed by IMRT. SV, I don't mean to be giving you the third degree here, just hoping that your decision is fully informed based on a realistic evaluation of your condition and your post left out some of the information that might be useful.

If the main reason you're pursuing surgery is that you can always do radiation afterward, I would encourage you to get a second opinion. I think you ought to go for the best plan A and not worry about plan B at this point. With regard to your first post, while many men with low risk cancer regain continence and a usable erection after surgery, I believe the statistics for that same outcome in men with advanced cancer is more of a problem. Be sure to ask your surgeon to explain the likelihood of salvaging the nerves given that is a prime spot where advanced cancer tends to go as it leaves the prostate, as well as the potential for penile atrophy, loss of size, and incontinence issues following RP for an advanced cancer patient. Having a positive attitude is great, but a positive attitude will not give you a normal erection if they have to remove the nerves.

In any event, consultations with other experts won't hurt you except for perhaps an additional copay.

You have a great attitude and that’s a big plus but hope alone isn’t a strategy, at least in my opinion. While you will probably want to make a decision about treatment fairly quickly, you really want to get this one right. You have time to do some more research and consult with more experts and regardless of what you eventually end up deciding, you will have the satisfaction that you fully checked out alternatives and picked the one best for you.

I wish you the best.

SV
Posts: 56
Joined: Sep 2010

x

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

My Gleason was a 9 with psa of 24. That was over 6 years ago. My treatment was one shot of Lupron, to shrink the tumor, followed by radiation. A follow up biopsy about 2 years ago showed zero cancer left in the prostate. My cancer had already spread and surgery was ruled out as a possibility. Once the cancer has spread doing surgery would be a waste of time.
My first and second opinions both gave me about a 50% chance to survive 2 years and I give most credit to my success by eliminating the stress in my life and the great support of my wife.
Though I am now in hospice care I still work and play golf every day. I did not believe the oncologist when he gave me about 6 months to live back in April. I firmly believe I have several years left and if not at least I will have lived my life on my own terms.
Use your positive energy to inspire others and use your best judgement to make decisions about treatment. I had almost no side effects from the radiation and wish I had refused the Lupron shot but the radiation oncologist said it was necessary because the tumor was so large.
I wish you all the best in your journey.

ezra99
Posts: 18
Joined: May 2010

My gleason score was 9 on biopsy with PSA <10 and about the same age as you. Almost hate to say much because people on the board have some strong opinions and someone will probably clobber me for having surgery. After meeting with medical oncologist, radiation oncologist and urologist I decided to go with surgery with full knowledge that I would probably need to do radiation after surgery. I waited nearly 8 months as I wanted to get full continence and erections unassisted by medications prior to starting radiation. After regaining both, I'm now in salvage radiation as I have a detectable PSA (so this is where someone will probably say - "I told you so" - shouldn't have had surgery). I don't regret having surgery at all. I figured in one day I removed a great amount of cancer cells from my body. I'm hopeful that the ones left remain in the path of my IMRT. If not, next step is intermittent ADT. Not sure if I would recommend this to others but for me it made the most sense but I'm kind of a pragmatic, decisive, let's do it guy. One thing I did consider that I haven't seen mentioned was doing chemotherapy prior to surgery. I think this protocol is still being studied but it was presented to me as a viable option. I don't have any literature on it but I'm sure there is something on the internet - probably under current trials. You might want to talk to medical oncologist about that option.

Good luck on your journey to victory over PC.

BRONX52
Posts: 156
Joined: Apr 2010

I don't think anyone will clobber you for choosing surgery or even tell you "I told you so" for having to get radiation treatment for a rising PSA. The treatment you choose is a personal decision that only you can make. I too had to make this decision and I also chose surgery. For me, the prostate cancer was clinically diagnosed as T1C but turned out to be T3A . My pre-surgery biopsy showed 2 out of 10 cores positive with a gleason of 7. positive cores showed less that 5% cancer. The post surgery pathology showed a prostate that was 75% involved !! I had a positive margin and extraprostatic extension. It surprised me and even my doctors that it was so much worse that originally diagnosed. But I chose to look ahead and not second guess myself.I was happy that the cancer generator was out of my body. My psa was 0 six weeks after surgery but having the positive margin and extraprostatic extension I decided to have adjuvant radiation to hopefully take care of any cancer that may have been left behind. I was continent after my cath came out and have had no side effects from the radiation except for a little urgency and frequency of urination during the radiation treatment. Surgery was in Feb-2010 and completed 8 weeks of radiation in June and PSA is still zero. The radiation you have chosen (imrt) is very accurate and if there are remaining cancer cells in the prostate bed and pelvic region, this treatment should take care of it. Good luck and continue to look ahead !!!! Dan

mrspjd
Posts: 688
Joined: Apr 2010

It is sad & disappointing to read that someone might hold back and not share their Pca story, history or tx plan because of fear of being "clobbered" or because of "strong opinions" on this discussion board. I would be more afraid that I hadn't considered all the facts or options or read something that would make me ponder if there was another choice I might consider--we all second guess and hope we've made the "right" decision (is there such a thing?) Bottom line, most PCa tx decisions are a gamble, but why not make it a calculated, educated gamble? I am more afraid of not being open to reading a discussion that might provide info I had not previously considered, or viewing an article/study I had interpreted to mean one thing, but find it could actually be interpreted in an entirely different way, exposing loopholes I had not initally seen. The recent PCa forum discussions/debates, sometimes passionate, perhaps heated, (at times, sadly lacking in civility and respect) with several frequent posters, of which I was an occassional participant, should not be misinterpreted as being "for or against" a particular tx, or viewing certain PCa tx choices as the "only right choice" or a "wrong choice." Instead, consider viewing those discussions/debates with an open mind, as an opportunity to expose another way of thinking, an alternative critical thinking pathway leading to better PCa tx choices, or perhaps looking at study data or PCa articles that appear to say one thing, but on second glance, seeing that the article has an agenda to promote. Obviously, everyone is entitled to their own opinion and we all see things from different perspectives. This may be surprising to some, but I am not pro or con RP surgery or radiation, etc. I am, however, passionate about considering all the facts, research, studies, that I can get my hands on and sharing that info with my husband so that he can use all the data we both have collected to make an intelligent, informed, educated and calculated tx decision. I'm sure others will strongly disagree, and take up sides--pity, as we are all fighting the same battle.

BRONX52
Posts: 156
Joined: Apr 2010

I honestly believe that most if not all who post on this forum are good people who unfortunately have to deal with this disease. Some,if not most, are passionate about the treatment choices they have made and that's fine. Sharing information about this disease and the various treatment options, personal experiences, informatiom sites etc; is what makes this forum an exceptional site. Time and time again you see people seeking help and advice, and the posters on this site always provide feedback to the requestors. Some of the info provided is based on their personal journey, or something they have researched and are willing to share. All in all, there is no lack of feedback and pertinent information provided. Recently though, some posters have been very passionate and somewhat combative in their posts. Although I agree that all sides should be heard, maybe we need to dial down on the passion meter. Good information is often overlooked when a reader suspects that posters are just trying to one-up each other and the post becomes very uncivil. It's not hard to be civil (especially online). All you have to do is TRY. DAN

mrspjd
Posts: 688
Joined: Apr 2010

Bronx,
PCa is a passionate subject, but that is no excuse for lack of civility and respect, whether in person or on the net, when "hot" topics are discussed. I would hope that most users, as I, do not condone or perpetuate the use of violence, on this discussion board or in person, in the form of abuse, personal attack, cruel and insensitive remarks, name calling, etc. No ifs, ands or buts--these SHOULD be the ground rules--are they always the ground rules and does everyone obey them? Of course not (not condoning, just being realistic). I also agree that for the most part, those that post here are sincere in wanting to share and exchange info (with the exception of a few strange trolls that come and go), first looking for help/advice, then, many staying & giving back, becoming the lay "helpers/advisors." Everyone is here for a different combination of needs/reasons & networking, some to have their questions answered, get support, some just to give advice & be supportive, some to be open-minded and learn--using the info here to further their research, and some, who just want confirmation that the decision they made was right, their mind already made up, and no discussion, debate, etc. will change that--that's OK too--to each his own.

As you perceptively indicated, and I agree, at times the debates appear to take on the characteristics of a turf battle and when that occurs, many can be turned off and lose the essense of the discussion--isn't that what happens in TV political debates also (again, not condoning, wish they were more civil too)? Keep in mind that one can stop reading or turn off the TV, whichever the case, as no one is forcing anyone to read or watch
something stressful, upsetting, disturbing, or disrespectful. It's kind of like a car wreck on the fwy, no one wants to look, but everyone slows down, just to peek!

Rambling here...Guess the bottom line is simple: play nice, share your toys, keep an open mind and be civil!

trfouts
Posts: 14
Joined: Sep 2009

Amen Brother, it does seem like sometimes you are berated for making your own choice on this site,Yes it is a very tough debate to have in ones own mind. We need to support what ever each person decides to do 100%.

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

Ezra,

I can't imagine anyone telling you "I told you so," but if they did I would simply ignore them. There are no absolute rights or wrongs in dealing with this. You made your decision with your eyes wide open after consulting and looking at all the possibilities to deal with a tough situation and made an informed choice you felt was best for you. That's what we're all supposed to do as informed patients in partnership with our medical team. I hope your recovery continues to bring you positive results.

Best,

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

SV,
My dad was treated at Loma Linda with Proton for his Prostate Cancer back around 1996 or 1997. He was Gleason 6 Those were the early days of Proton and then they treated all Gleasons at Loma Linda since they were 'learning' what the proton was most effective at.

I believe now they will not treat as primary treatment above a Gleason 7 but of course check with them.

From what I understand on surgery following radiation is that some doctors will perform but that it becomes a harder surgery to perform since their is radiation scaring.

Larry

Trew
Posts: 891
Joined: Jan 2010

My Pre-surgery gleason was 8 then moved up to a 9 after surgery. Loma Linda told me not to wait but to go ahead with surgery as soon as possible. As a patient at LLU 09/10 (nov- Jan) I got a combination of proton and then radiation. I didn't meet any pateints who weren't getting the combo treatment with gleasons of 8 or more.

also, my primary tumor was right at the top of the prostate, right undr the bladder/bladder neck. Like in real estate, location is everything.

SV, I am sorry to hear you are having to go through this. Don't read my pad diaries- just discourage you like it does me.

My, I do hate PC!!

Steve199
Posts: 3
Joined: May 2010

After several sleepless nights I decided to have HIFU as my first choice of treatment for my Gleason 9. This was in Oct. 22, 2009 that I had the treatment. Next month I go in for my 1 year PSA test. The previous 3 results have came back .001. I'm very thankful for that. It has been a success so far. The reasons for choosing HIFU was I was told that they felt 70% chance to get the cancer the first time because my prostrate was small and the cancer was all on the right side. Because of where the high grade cancer was located in the prostrate the Dr. felt it would be to my benefit to treat the nerve bundles on the right side. I agreed that the reason I was there was to get ride of the cancer now the first time so take them if he felt it was to my benefit. He did. Second I was told that I would still be able to still do HIFU again, radiation or surgery if the cancer came back. I also have had some scaring in my urethra and I have had to self cath at times. This is becoming a less of a problem and I am sure that will pass in a short time. All of these are of no concern to me. The other 3 men treated the same day are all ok with no problems at all and all have PSA reading of less than .01. Dr. told us that it was a possibility of 17% that scarring would occur and I was the lucky one. That said I also have the best PSA reading. I think he fried me more that the others because of my higher grade of cancer.

Don't let any one sway you from your decision on your choice of first line of treatment. The first and most important is the skill of the Doctor of your choice. I think it's the most important -not the treatment. That said a Gleason 9 in my option must be considered completely different. We in my option have to play ball completely different that Gleason 6. Still all of this is a individual thing. All treatments can have some side effects some men experience them some don't. I also think we need to think not only on the choices now but also what if's if it does return. I might add the Proton people in Oklahoma City would not recommend their treatment for me.

Best of luck and I know from your post your attitude and mind will conquer the beast.

SV
Posts: 56
Joined: Sep 2010

Thanks again amigo. Here is my biopsy report:

A) Right apex adenocarinoma (Gleason score 4+3=7) involving 35% of the specimen (two of two cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 0.42 cm

B) Right mid adenocarinoma (Gleason score 4+5=9)involving 40% of the specimen (two of two cores contain cancer). Cancer length 0.6 centimeter

C) Right base adenocarinoma (Gleason score 3+4=7). Involving 10% of the specimen (One of one cores contain cancer). Gleason pattern 4 comprises 30% of the cancer. Cancer length 0.1 cm

D) Right Lat Apex adenocarinoma (Gleason 3+4=7) Involving 75% of the specimen (One of one cores contain cancer) Gleason pattern four comprises 30% of the cancer. Cancer length 0.68 cm

E) Right lat mid adenocarinoma (Gleason score 3+4=7) Involving 75% of the specimen (four of four cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 2.1 cm

F) Right lat base adenocarinoma (Gleason score 4+3=7) Involving 10% of the specimen (one of one cores contain cancer) Gleason patter four comprises 75% of the cancer. Length 0.13 cm

G) Left apex benign prostatic tissue. Mild atrophy. Mild chronic inflammation.

H) Left mid benign prostatic tissue.

I) Left base benign prostatic tissue.

J) Left lat apex benign prostatic tissue.

K) Left lat mid benign prostatic tissue.

L) Left lat base benign prostatic tissue.

Over all:
12% organ confined
85% Extraprostatic extension
73% Seminal vesicle involvement

So what do you guys think? It's a tough challenge but we are confident we can win.

Swingshiftworker
Posts: 620
Joined: Mar 2010

If I recall correctly, surgery is NOT recommended if it is clear that the cancer has already metastasized beyond the prostate capsule.

Reason? Since the cancer has already spread beyond the prostate and since other therapies -- such as radiation, chemo and hormonal therapy -- will be required to treat it, there's no need to do surgery with all of the attendant risks involved.

According to your report, 85% of the cancer has already spread outside of your prostate and 73% of your seminal vesicles are already involved. So, I don't think surgery would be your best course of action at this point in time. I'm sure others will chime in to let you know if they think I'm wrong.

Best wishes to you in overcoming this daunting challenge!

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

Swing, I tend to agree with you on this but SV's doctor team IS recommending surgery and he has a date in October. My point in an early post on this subject drew a similar conclusion as yours and my suggestion to SV was to get a second opinion while he had time. There may be some aspect of his diagnosis which leads his urologist to believe the surgery is the best course here. I just don't know from all the information provided, which is why I think a second opinion is appropriate.

ezra99
Posts: 18
Joined: May 2010

SV,

I'm not sure what 85% Extraprostatic extension & 73% Seminal vesicle involvement means. Did you have other test beside a biopsy? I don't think that it means that you have 73% of seminal vesicle involvement. After my biopsy I was told I was at least a T2 and 70% chance of T3 which means seminal vesicle involvement. I still chose surgery.

I also am not nearly as pessimistic about the medical profession as others here. I do not believe any surgeon recommends surgery because he is a surgeon. I think this kind of mistrust is a "sign of the times". If I had thought that my surgeon was doing so I would have found a different one. I did see a medical oncologist and radiation oncologist prior to making my decision but not because I thought my surgeon was trying to pay for a houseboat or European vacation. I just wanted their expertise. They were both supportive of surgery as an option and neither were surgeons. Talk to your treatment team about all the options and make your decision.

Last, prostate cancer with extraprostatic extension and seminal vesicle involvement is not considered metastatic. It is local advanced prostate cancer. Metastatic cancer with your relative low PSA, if present, would be undetectable unless noted in lymph nodes on biopsy. I did have a suspicious lymph node on CT scan and considered biopsy of that prior to surgery but elected not to do that. Turned out that it was just a "juicy node".

My biopsy report was pretty similar to yours and I did surgery. As previous stated, I am currently doing salvage radiation but my treatment team and I all had hopes that surgery would have been completely sucessful. Didn't happen but even if it had they would have recommended ART due to seminal vesicle involvement. Not sure I would have done that if PSA had remained undectable but that's not a decision I need to make now. (bummer - wish I had been challenged with that decision.)

P.S. - Also if you decide to go with surgery have a talk about open vs davinci. My one thing I would change in hindsight was I think I would go with open.

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

Steve,

Thank you for your post on HIFU. I was unaware that HIFU would be considered with a Gleason 9 and it is good to know that there are other options out there and that it seems to be working well for you.

It would be great if you could post more about your HIFU experience, how you got there, what led you to decide it was best for you, what you felt about the quality of treatment you had, and so forth.

I know that HIFU is a frequent choice to treat low risk PCa in Canada and Europe, but because it hasn't yet received FDA approval, very few men in the USA have had it and as a result, there are few first hand experiences on this forum.

There have been some very vocal wives who have posted in the past about HIFU, but frankly, their posts didn't always make a lot of sense and to me, they just didn't ring true. Couldn't put my finger on it exactly, it just made me suspicious.

A first hand account would be great and I hope you consider starting a thread about your HIFU experience as many here would very much appreciate learning more about it.

bdhilton
Posts: 752
Joined: Jan 2010

A well known surgeon I know once told me that when he is called to do salvage surgery when radiation fails he schedules the surgery with a backup surgeon then calls in sick…He really does not do this but his point is that salvage surgery after radiation is a difficult procedure at best and the results are not favorable…

The facts are that there are a lot of treatment choices and that is one of the hard things to deal with this cancer “sifting” through all of the “snake oil salesmen pitches”… but this is a decision you need to be conformable with and you have and believe you did the best possible thing…

BTW... I elected to have open surgery back in March this year all is as good as it can get right now....

Best of luck to you fighting this beast PCa

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

I have read a number of studies and papers that wold indicate that while surgery after radiation is technically challenging, the long term results are in fact quite favorable for men with a pre-treatment PSA of <10 and are operated on before there is evidence of metatastic cancer. The long term survival for men in this situation parallels those men who have salvage radiation therapy following a failed RP. So, not sure what you mean by "results are not favorable" at the close of your first paragraph. Could you elaborate on that?

mrspjd
Posts: 688
Joined: Apr 2010

I thought I read in your initial thread post that you were taking testosterone injections, perhaps part of your body building regime, but it must have been edited out, as I can't find that reference now. You seem to understand the connection between the testosterone & PCa, as I believe you indicated you were going to stop the injections. Might you also have taken DHEA over-the-counter supplements? I ask because for two years prior to pjd's T3 dx (locally advanced, Gleason 3+4=7, 9/12 cores positive, high volume PCa), he took DHEA which increases testosterone levels (we all know that PCa loves to feed on testosterone). Come to find out just how dangerous this supplement is. After dx, we asked several drs how/if this supplement could have affected pjd's PCa. None believed it "caused" the cancer, but some suggested it might have speeded up the growth of cancer cells lying dormant---this was only a WAG on the part of the docs since they all said they just don't know. Although pjd had researched DHEA prior to taking it, along with other supplements he was taking at the time, we have both tried to spread the word about how dangerous DHEA supplements are (the warnings are out there, but unfortunately, they are buried in the literature) to men, in particular, with regard to PCa.

SV
Posts: 56
Joined: Sep 2010

Agreed. My cypionate dosage was one shot every two weeks, which is very very low. A body builder would do that daily with a variety of other drugs. I am a martial arts competitor, not a body builder and other than one beer per week, never touch drugs, smoke or eat junk food.

As for second opinions, I first went to City of Hope and then the Mayo Clinic in Arizona. Both of those hospitals offer a variety of treatments and both of those hospital's top doctors recommended DaVinci surgery as did my urologist in San Diego. I have no opinion as to radiation or surgery so I am not biased in any way and am just seeking the best advice from within and outside the official medical community. I deeply appreciate a frank and open conversation here as we all know what we are up against.

Once again, thank you all for your comments and suggestions and please by all means continue.

mrspjd
Posts: 688
Joined: Apr 2010

Since you invited add'l comments, FWIW, I agree with the perspective posted by Swing & Kongo, especially after reading your biopsy report. In pjd's case, dx in February this year, (stats posted in my other DHEA post) his ECE was diagnosed & confirmed pre-tx using endorectal MRI w/Spectroscopy @ UCSF (the endo MRI using Tesla 3, now considered by many to be the gold standard for staging T3 PCa), as well as had a color doppler ultrasound, bone scan & pelvic CT w/contrast to rule out metastasis.** Also important in optaining accurate PCa staging info prior to tx decision for pjd was sending his biopsy out for a 2nd opinion read. His decision not to have RP (he WAS a candidate for surgery, with NO prior health issues) was based on his extensive research, testing, and many dr consults w/ well known and respected experienced/skilled RP surgeons. The very high likelihood that adjuvant RT would have been required after RP was a factor in his decision not to do RP--he felt, why risk all the potential side effects of RP, then compound those side effects with add'l potential side effects of RT. Studies he read showed a high success rate in T3 PCa for a combination of ADT, HDR-B, and IMRT, and that is the approach he has taken--it was his decision & right for him because he believed in it (which is the key in any informed, well researched, PCa tx decision you make). He is currently in IMRT, having completed HDR-B, and will most likely be on the ADT for no more than one year. Studies he read for T3 PCa have shown that when ADT is combined w/IMRT in a neo-adjuvant tx approach, it has comparable success rates of containment and PCa-free survival for T3 stage to that of RP alone. There are a few users on this site that will tell you they had similar stats in T3 PCa to that of pjd, had open RP w/very few side effects, no incontinence, etc. and their post-RP psa is still >0.01 at 6mos to 1 year out. Great for them, but know that the odds of that outcome are few and far between for T3 locally advanced PCa. Obviously it's your decision, especially if you believe RP is the best choice for you, and you may be one of the lucky ones that beat the odds, 5-10 years out, post RP. BTW, if pjd had elected RP, he would have had open RP, not Robotic (RRP). While I'm sure other posters will disagree, we were told (by both RRP & RP docs) for T3, locally advanced PCa, RRP has it's limitations--the robotic arm, even w/ skilled hands at the controls, cannot obtain the larger width of margins (due to angle limitations) necessary in locally advanced PCa as can be obtained in open RP, nor can it remove as many nodes (depending on the #, if nodes are involved, for the same reason) as the open RP procedure, given an experienced and skilled open RP surgeon. Certainly you will need to research this yourself & obtain several add'l consults as was recommended in previous posts. BTW, after his PCa T3 staging was more accurately confirmed, pjd cancelled the appt he had at City of Hope with Dr. Wilson--Wilson and Kawatchi are both well known nationally for RRP at C of H. Frankly, I'm surprised C of H accepted you for RRP given your biopsy path report as I seem to remember certain RRP exclusion criteria for locally advanced PCa, including extent of ECE, gleason 9, etc., but guess that might have changed. Or perhaps they are now performing RRP for T3 and recommending adjuvant RT post RRP?

If you haven't already done so, I strongly suggest you consider making arrangements (the sooner the better) to have your biopsy slides sent out for a 2nd opinion to a well known, respected path lab that specializes in PCa pathology (such as Dr. Epstein @ Johns-Hopkins). As previously mentioned, this was essential for pjd in the beginning since the local lab biopsy report indicated a gleason of 3+3=6. I would also encourage you to find and attend a local PCa face to face networking group, such as "Us Too" or "Man to Man" which is sponsored by the ACS. You can do a google search to find one of these networking PCa groups in a city near you. If you are in So Cal as we are, there are many good groups nearby. We found this approach to be an extremely helpful and educational resource as we embarked on our PCa education journey 7 months ago. Good luck to you on your journey.

**there seems to be some confusion in previous posts regarding metastatic PCa (T4) and that of T3, which is locally advanced ECE, usually in the seminal vesicles, sometimes the local pelvic nodes, but is determined to be non-metastatic. Bone scan & pelvic CT do not show mircoscopic PCa & will only pick signifcant metastasis, usually at the T4 stage. RP is, in almost all cases, rarely recommended by respected doctors as tx for T4 stage metastatic PCa, meaning that it has spread distally, usually to the bones and/or organs.

SV
Posts: 56
Joined: Sep 2010

Thank you so much for your detailed reply. But I am completely unfamiliar with the abbreviations you used so I have no idea what you were saying. Your thoughts on this subject are vital to me...could you please type in the actual words instead of abbreviations?

Also, my bone scan with radioactive dye and CT with dye were both negative. I also think that the Bostwick Laboratories report indicated I am at stage two as opposed to stage three. My urologist said this is one of the better labs, anyone know if that is true? Does any of this make a difference?

mrspjd
Posts: 688
Joined: Apr 2010

sv,
Although pjd opted not to use Boswick, it is supposed to be one of the better PCa path labs from what I understand, so congrats on already obtaining the 2nd opinion on your biopsy labs, you're ahead of the game! Also, great news from your bone scan and pelvic CT w/contrast. Not knowing exactly what clarifications you wanted, I'll guess at: Brachy--Brachy therapy is generally defined as radiation therapy applied directly on or to an area for treatment, in this case the prostate. HDR-B or High Dose Rate radiation Brachy, is a form of brachy but temporary, not permanent--and although not for everyone, it has been used successfully in the tx of PCa (and other cancers as well). The temporary high radiation dosing in HDR-B is often compared (but delivered differently) to the type of radiation dosing delivered externally by stereotactic radiation therapy or SBRT (like the trademarked name "CyberKnife" for the company's equipment/machine that delivers SBRT). HDR-B is not to be confused w/the more familiar brachy therapy, which is the implantation of permanent radioactive seeds into the prostate. The Memorial Sloan-Kettering Cancer Center website as well as the prostate-cancer.org website (enter key words to search) both have good explanations of the HDR-B procedure. As with any PCa treatment, an experienced and skilled doctor for the HDR-B procedure is essential, and in this case, there are only a handful of docs nationally that fall into that catagory. I'm not advocating this tx approach and it may not be appropriate for your PCa dx, just providing the info since you requested clarification.

I think you indicated you were dx @ T2 or stage 2, which generally is defined as the PCa being "localized" and "contained" within the prostate, without ECE (extra capsular extension) outside the capsule/prostate, i.e. seminal vesicles and/or local pelvic lymph nodes. When the seminal vesicles and/or local pelvic nodes are involved (ECE), usually that is be classified as locally advanced or T3 stage. A staging of T2 would seem contrary to what is indicated in the report you posted (did the 2nd opinion report confirm the findings in the 1st report or was it different?)--but I am no expert and I've only given just a very general broad-based explanation. So best to do add'l research and obtain the exact staging definitions, etc then be prepared to discuss this with your doctor. Unsure what other clarifications you would like, so please be more specific, and I (or others) will try to be helpful.

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

SV,

I also live in San Diego. Although my diagnosis was much different from yours (1 of 12 cores positive @15% involvement, Gleason 3+3, Stage T1c, PSA 4.3).

Interestingly, my urologist in San Diego who wanted to do surgery, said that he would not recommend DaVinci for me if I had it done in SD because his opinion was that there were too few doctors in the area who had enough operations in their history and felt that if I were going to do surgery and really wanted DaVinci, that he would refer me to someone out of town. Certainly that's just one opinion but something to think about.

I agree with mrspjd about open versus robotic in later stage cancer of T2 and greater. Even bdhilton, whom I frequently disagree with on surgery vs. radiation issues and who is regular poster here, elected open surgery for his higher risk cancer over DaVinci. I think for all the reasons mrspjd mentioned I too would choose open vs. robotic if I were going the surgical route with a higher risk cancer.

I am not surprised that two urologists recommended surgery in your case. Doctors tend to recommend treatment in the fields tht the specialize and urologists are surgeons. Surgeons recommend surgery. Radiologists pretty much recommend radiation. While both will tell you about the other options (they're required to under California law in order to get your "informed consent" prior to treatment), you really ought to talk to a radiologist in person to get their true perspective.

In San Diego I can recommend three radiologists: Dr. Donald Fuller of San Diego CyberKnife (you can google him) or the doctor I ended up with, Dr. Patrick Linson at CyberKnife of Vista. Both are outstanding radiologists that specialize in the treatment of prostate cancer. Although the name says CyberKnife, both centers treat with a full range of brachytherapy, HDR brachtherapy, IMRT, and CyberKnife SBRT. There is also a Dr. Lori Coleman at SD Radiosurgery (located at Palomar Hospital) that I consulted with. They use a new machine called Novalis that delivers very precise radiation in a IMRT or SBRT format. I thought she was great as well. Any of these doctors would give you a perspective on your options with radiation.

In my investigation, I met with six doctors. Three recommended surgery. Three radiation. They all were excellent doctors who believed passionately in their specialties but it wasn't till I talked to all of them that I felt I had the complete picture.

FYI: SBRT = Sterotactic Body Radiation
IMRT = Intensity Modulated Radiation
HDR brachytherapy = High Dose Radiation with temporary inserts in the prostate

Good luck

mrspjd
Posts: 688
Joined: Apr 2010

sv,
I came across another thread (link posted in the subject box above) about gleason 9 from about 5 months ago that you also might find useful. I'm sure there are other previous threads (in addition to your continuing thread), so if you want to explore that option, just do a search in the box up on the top right side of the PCa main page.

142
Posts: 169
Joined: Dec 2009

Bostwick labs did all my biopsy/pathology work, and they are considered to be one of the best. I was very impressed with several parts of that relationship, from the report detail to handling costs for test work that my insurance would not cover.

The labs which specialize, such as Bostwick, will have staff with more experience in prostate cancer, as opposed to generalists who know the rules, but don't see specimens as often.

It only makes a difference in that you have a better idea of what you are fighting against, and what treatment to choose. Be aware that a biopsy is a limited number of cores from a much larger organ, so it is likely that a post-surgery pathology report, which can look at the entire organ, may show more cancer and a higher grade.

I was considered a G (Gleason) 4+4 at biopsy, upgraded to G 4+5 post-op. I had DaVinci surgery at age 56, followed by IGRT (Image Guided Radiation Therapy). At almost 1 year post-DaVinci, I have a PSA of <0.01 (called "undetectable").

bdhilton
Posts: 752
Joined: Jan 2010

This post is about SV on his election for surgery over radiation not turning the thread into your personal agenda …. SV clinical results are totally in line to have surgery based on his stats if that is what he wants to do….

This post is about SV on his election for surgery over radiation not turning the thread into your personal agenda …. SV clinical results are totally in line (according to every major teaching hospital and renowned surgeon out there) to have surgery based on his stats if that is what he wants to do….

Some of you have got to stop making these statements that “…my treatment has a better quality of life over yours…”, “…your procedure increases the odds of developing further sexual or incontinence problems…” says who? YOU? I smile when I read theses claims but others here have doubts and have second guessed their treatments and no one needs this here…

I am a big believer that diet and exercise are a big part of your healing and survival process and I am also a big believe that what you truly believe in (i.e. your treatment) is in a big component of the survival process as well… So the message her is never regret your treatment choice and control your diet and exercise…

As our friend Trew says here often…”we are all snowflakes”

Best to all

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

Not sure who appointed you head of the thread police. Nobody has made any claims about one quality of life over another. In regards to SV’s treatment choice, it seems clear to me that most here have simply recommended he seek as much information as possible before making a decision. If you think that’s not a prudent path, then you should try to state that clearly and succinctly without casting personal aspersions.

When you make statements such as: “according to every major teaching hospital and renowned surgeon out there” or as you did in an earlier post in this thread: “salvage surgery after radiation is a difficult procedure at best and the results are not favorable”…without reference or citation you imply a level of expertise that simply isn’t warranted.

Certainly SV is free to choose whichever treatment option he wishes and we’ll support whatever decision he makes.

bdhilton
Posts: 752
Joined: Jan 2010

From my perspective you are increasingly becoming more aggressive with your posting, plus the "complexities" of your posting must be very time consuming (I have no clue as to how a person with an 9-5 job is on here all day) along with attacks to anyone that questions your type of radiation treatment...In a recent posting you have even challenged Walsh by name...come on...

I for sure am not an expert or post like one either...Perhaps you should take your own advice and give advice if asked rather than aggressively post for superior benefits of cyberknife because you have had it…

From what I read from the gentlemen who started this tread is that he is not considering radiation so why would you post any response with negative undertones associated with surgery …I believe you are out of line….For example, I have never told anyone that was electing radiation or anything else to checkout surgery because I had it or do I get on threads about radiation and talk about the evils of radiation…
As far you posting negatives on surgery on a pretty regular basis, I would advice you just to read your own comment throughout this thread or any thread…For example….

“…the potential for penile atrophy, loss of size, and incontinence issues following RP for an advanced cancer patient. Having a positive attitude is great, but a positive attitude will not give you a normal erection if they have to remove the nerves…” Where are the negative highlights for radiation? This is a posting for a guy considering surgery…

This is not your forum and you are acting like you are the editor and chief now….Interesting…From my view point and I have stated this before, you are clearly not dealing with your choice of treatment and are holding many here hostage to your ramblings of cyberknife….

I keep suggesting that we are all snowflakes here and for whatever reasons you are not able to grasps this…

Sorry to be negative here….I am done here for the weekend…Best to all

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

Have a great weekend.

SV
Posts: 56
Joined: Sep 2010

Aw come on guys...we are all members of a club that none of us want to belong to so the only adversary is cancer, not each other. Please keep the dialogue positive no matter what you feel someone else is alluding to. As per advice, I just contacted Fuller for Cyberknife info and will post his response.

I also supplied a copy of my biopsy to a friend who is one of the world's leading surgeons on knee replacement, to poll his fellow doctors as to what they consider the best solution for my case. Hopefully we'll receive some unbiased opinions that can lead me/others in the right direction.
Thanks again my friends

SV
Posts: 56
Joined: Sep 2010

My knee surgeon friend shared my biopsy results with several other experienced surgeons as well as a few radiologists and all concluded that surgery was my only option. They also said some type of radiation may be required later but that would depend on the pathology report. Still nothing back from Cyberknife people but I am betting they would agree.

We have already decided that once my tumor is taken out October 19 with DaVinci machine, I will not accept radiation or hormone therapy. We are opting to bet the farm on healing with positive energy, detoxing, diet and nutrition. Anyone have opinions on this doctor or his theories? http://www.thedoctorwithin.com
thanks again for your input.

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

SV,

Best wishes for a successful outcome. We will all be rooting forr you.

SV
Posts: 56
Joined: Sep 2010

Had DaVinci surgery 10/19, stayed two nights due to being in extreme pain from the gas. I must have woke up combative during surgery because they dosed me so heavy it took five hours to wake me up. Now feels like I was worked over with a baseball bat from head to foot. Even though I walk several times a day pain is extreme...and I can take a lot of pain. Any suggestions?

BRONX52
Posts: 156
Joined: Apr 2010

KEEP WALKING !! I HAD SIMILAR GAS PAINS AND PAIN FROM THE SURGERY BUT I FOUND THAT THE MORE I WALKED EACH DAY MADE THE PAIN GRADUALLY DECREASE. IN NO TIME I WAS PAIN FREE. I DIDN'T WANT TO WALK WHILE I WAS IN PAIN BUT I'M GLAD I DID. GOOD LUCK---DAN

SV
Posts: 56
Joined: Sep 2010

If so, how much and how often? Judging from the type of pain, I am pretty sure that I have some pulled muscles in my back and stomach from when I woke up during surgery and tried to get up.

BRONX52
Posts: 156
Joined: Apr 2010

I can't tell you if you have pulled muscles but the pain you are feeling in your back and stomach might be from the position they have to put you in to perform davinci surgery. It's sort of an inverted position which could cause soreness after surgery. You are bringing back alot of memories. I had davinci in Feb and experienced pain in the same areas you described.Even the areas of the incisions were sore, and getting in and out of a chair was quite a challenge as far as pain was concerned. My doc sent me home with pain killers but said that when they run out you would only need over the counter pain medications. I tried to walk at least twice a day and gradually the pain disappeared. Just do as much as you can tolerate but not to the point where you are in extreme pain.I was told to lift no more than 5-10 lbs for at least 6 weeks and then gradually increase from that point on. Just take your time and things should get better. If the pain doesn't go away in a reasonable amount of time then I would give your doc a call.---Dan

SV
Posts: 56
Joined: Sep 2010

Getting catheter out today, what sort of pads/diapers should I bring?

SV
Posts: 56
Joined: Sep 2010

Capsule contained
No seminal vesicle involvement
All margins clear
Gleason score lowered from 4+5=9 to 4+3=7
One and a half nerve bundles remain intact
Looks like they got it all but Dr. Kawachi ordered a followup PSA test in 2.5 months
No leakage after catheter removal and have unassisted semi-erections with no attempt to climax because I am still way too sore down there. Will try tonight with Vitamin V.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Best wishes and good luck with your recovery.

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

SV:

Great news on the results of your surgery. I'm glad it was downgraded somewhat from your initial diagnosis. Best wishes for a speedy and full recovery.

bdhilton
Posts: 752
Joined: Jan 2010

You are a very blessed man...I am happy you selected surgery because you now you know 100% that your cancer was down graded and where you are with this beast...I am really happy for you...

Hey now you got to light a candle, walk and walk and walk, consider make some diet changes, enjoy life a bit more and support yoiur favor PCa foundation so we can kill this beast...

Best to all

hopeful and opt...
Posts: 1282
Joined: Apr 2009

BDH gave great advice.....exercise and eat healthy...heart healthy is prostate healthy...take care of your self....................think positive every day and avoid stress from your life.........

SV
Posts: 56
Joined: Sep 2010

Thanks guys. I do indeed feel blessed, but also more a believer in positive thinking than ever. True, I did change my diet to eliminate an already low sugar intake, ditch red meat and dairy products while loading up on licapene via two cups a day of cooked tomatoes. Neither Dr. Kawachi, nor my original urologist has ever heard of a biopsy report with a Gleason score lowered two points in a post pathology report. Even when going up, it is usually only by one point.

On the morning of surgery, as they were sticking the IVs in, I told Dr. Kawachi in no uncertain terms that my cancer was already in remission and that I was only going through with the procedure to humor him. The other doctor smiled and said that everyone loves a positive attitude. But I corrected her and said this goes beyond positive attitude, this is my belief. Period.

Ten years ago, I was taken prisoner in the Colombian civil war, tortured for five weeks, lost fifty pounds and nearly died. Almost under my own power, (over the side of a mule) I managed to walk out alive and stay that way, both physically and mentally. To remain halfway sane, I kept telling myself that if I can survive this, I can survive anything. And now that is confirmed. The power of the mind is absolute.

The only reason I relate this story is to help anyone else out there equally as scared as I was the first twenty four hours. After that, I took control of this hideous disease and willed it down to a manageable level for surgery. And yes of course I realize that there is a chance the monster could return...but not in my case. We have changed our diet and remain in rock solid belief the beast is gone forever. Period.

Along the every challenge and crisis that is laid upon us doing our short stay on earth, we also are provided the tools to prevail. The choice is ours, lay down and die or stand up and fight. So I say to all of you debating which remedy is best, pick one and believe. And if you have already chosen, stand by your decision and do not waver. Something about "With the faith of a mustard seed..."

Persevere my brothers, persevere.

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