I am still slowly getting over the shock of my Dx. I am married,17 years, with a 3 year old. I was in the middle of what WAS a great life, great family, great friends, stable well paying job. Everything was going so good. Now this!
I am stage T1c, 6-24 slides positive for early stage non invasive cancer, all cores were Gleason 3+3=6, perinueral invasion was abesent, <10% cancer on all positive cores, DRE-negative, PSA 8.5.
My PSA has been stable since May '10. I wasn't informed of this May Psa by my primary for whatever reason, that's a another story! I had the psa taken in Dec. during a yearly physical and it was 8.5. This led to my biopsy.
I meet with my urologist next Wednesday and a radiation oncologist Friday. In the meantime I am researching what direction to take and what Dr. is the most capable. I am leaning heavily towards prostatectomy, by regular surgery or da Vinci. I have not decided.
It's not hard to find info, but it is hard to conclude who and where the procedure will take place...PLEASE assist me...PLEASE!!! Guys my son is 3...3 years old! I MUST LIVE...I MUST LIVE LONG...FOR HIM IF NOTHING ELSE!!!
THANKS for any support you can give!
Last edited by Mholiday2; 01-16-2011 at 05:04 PM.
Reason: Had to update my clinical stage
The following user gives a hug of support to Mholiday2: *tony* (01-01-2011)
Holiday,
Very few patients Dxed with a Gleason 6 ever die from prostate cancer. All prostate cancer is not the same, it can range from being harmless to highly agressive. One way to determine the risk factors is by Gleason grade and psa, and both of yours are low. Any treatment you choose will result in a cure rate in the mid 90% range and even if you are in the unlikly 5%, it would take years or decades to get symptoms. The survival rate of contained G6 is about 100% 10 years out.
Do your research very carefully because of the low risk of your cancer, side affects of the treatment options should play a very sidnificant part in coming to a treatment decision.
Some books to read before choosing a treatment or even seeing a doctor so you can ask intelligent questions, "Surviving Prostate Cancer" by Dr Patric Walsh" Invasion of the Prostate Snatchers" by dr Mark Scholz and "A Primer on Prostate Cancer" by Dr Stephen Strum. If you have a good conception of all these three books you will know more about pc than 90% of the doctors you will be seeing.
Only by being informed can you make the best decisions regarding your options.
JohnT
Welcome to the club! I was dx'd in late 2006 at age 57. My biopsy path was Gleason 3+3=6 Right Apex only. I opted for radical surgery. I had a daVinci robotic prostatectomy in January 2007. My post op path came back a bit worse. My post op path was Gleason 3+4=7; Stage T2c; bilateral but confined to the prostate gland only. I'm glad I had it removed! Recovery was a cake walk! Back to work in 6 weeks only because I was a lineman for the phone company. If I did lighter work, I could have returned much sooner. I'm happy with the results. You need to remember, there are lots of ways to treat prostate cancer. I chose the one that made sense to me. You need to do the research (serious research) and decide what works best for you. There's lots of advice here but you need to remember, they are only opinions. As far as longevity, my uro says if I get to five years post op with a PSA that remains at zero, he will allow me to return back to my family doctor for all future PSA tests and consider me cancer free. I've had zeros since my surgery and my five year anniversary is January 2012. Best wishes!
Last edited by *tony*; 01-01-2011 at 12:05 PM.
The Following User Says Thank You to *tony* For This Useful Post: luckyxthree (01-17-2011)
If it's any help, I felt just like you when I heard my uro say the words, "You have prostate cancer." A shock! Although, my dad died of it in 1981 so I was always wondering and waiting.
Any PC history in your family?
The Following User Says Thank You to *tony* For This Useful Post: Swim Man (01-22-2011)
If it's any help, I felt just like you when I heard my uro say the words, "You have prostate cancer." A shock! Although, my dad died of it in 1981 so I was always wondering and waiting.
Any PC history in your family?
Yes, my grandfather was Dx'ed in his mid 80's. He was given shots to suppress his testosterone levels and died at 96!! His brother my uncle has it now and he's in his mid to late 80's and is doing fine. No one else that I know of. My father is 65 & his last PSA was < 1.
I am still slowly getting over the shock of my Dx. I am married,17 years, with a 3 year old. I was in the middle of what WAS a great life, great family, great friends, stable well paying job. Everything was going so good. Now this!
I am stage T2, Gleason 6 , 3-12 slides positive for early stage non invasive cancer, PSA 8.6 max. My PSA has been stable since May '10. I wasn't informed of this May Psa by my primary for whatever reason, that's a another story! I had the psa taken in Dec. during a yearly physical and it was 8.4. This led to my biopsy.
I meet with my urologist next Wednesday and a radiation oncologist Friday. In the meantime I am researching what direction to take and what Dr. is the most capable. I am leaning heavily towards prostatectomy, by regular surgery or da Vinci. I have not decided.
It's not hard to find info, but it is hard to conclude who and where the procedure will take place...PLEASE assist me...PLEASE!!! Guys my son is 3...3 years old! I MUST LIVE...I MUST LIVE LONG...FOR HIM IF NOTHING ELSE!!!
Once the initial shock settles in, approach the Dx with one objective. To make the best decision for you and your family. Research this dreaded disease and take notes, volumes of it. It will be a long drawn out battle. The more you know, the better your ultimate decision on how to battle it out. Thats how i approached my battle with PC. With your PSA at around 8 and a young 3 Year old, you need a solid game plan. After exhaustive research and interviews with the best specialists ( i spent almost a year researching ), i finally decided on an Open RP to treat my PC ( Gleeson 3+4 , PSA 11 , age 55 ). My PSA which had been holding steady at 8 had just jumped to 11 in a space of 3 months. Once i got the latest PSA reading, i immediately went on to the next stage and identified the best surgeon available in the country whom i wanted to perform the RP on me. I found one in Sydney, who was based in a different state from where i live, but that didnt matter, i felt he was the man i wanted to operate on me. I managed to get hold of him over the phone ( it wasnt easy, try calling a top specialist and see if they give you the light of day ). After speaking to him, i just felt i had found the right person i would entrust my life to. The vibes felt right. It wasnt the most economical route, the logistics and cost were horrendous, but money we can always earn back, Life is but one. I flew to see him Nov 2010, and booked surgery with him 6 weeks later in Dec. I had 6 weeks to get myself into good physical shape to prepare for the surgery. It was well worth it as i recovered post op with very little discomfort. I showered the day after surgery, had a solid breakfast and starting walking the hospital corridors. The choice of the surgeon was the best decision i ever made and he achieved the best results i could ever hope for. Negative margin , no lymph node involvement. The pathology from my excised prostate showed it was a nasty cancer which would have spread if i had waited much longer. The cathether came out a week after surgery, im now in my 2nd week post surgery and only needed to wear a pad the day they removed the cathether. Never needed a pad after that. I left for a long journey home the day after the cathether was removed, in time to spend Christmas Eve in my own home. Im hopeful for my potency to return in the future, but hey, the fun is in experimenting with Sex in a different playing field. But im hopeful. Very hopeful. A Positive Mental Attitude is imperative. In closing, let me add, Peter Scardino ( Sloan Kettering ) , Patrick Walsh ( John Hopkins ) specialist veterans from the best Institutes and experts in the field of PC, both say the same thing in their books, its not the procedure ( Robotic, Open etc ) but the CHOICE of the Surgeon thats crucial. Has he the numbers ( how many operations performed ) and track record ( post operative results on cure, continence and potency ) that matters most. Its still early days for me, but i feel great, and a burden has been lifted from my shoulders for now at least. That ticking time bomb in my belly has been removed, and with it, i hope and pray , the cancer within. Good Luck with your journey ahead, i will pray for your success in your endeavour. You may not decide to or need to go the surgery route like me, but the process of arriving at the final decision is still the same. Look for the best in their fields. It may cost more but its well worth it.
Thanks for your prayers and the info. Finding the most "gifted" surgeon for my procedure is by far the most daunting task of this journey. Nevertheless, I'll take on the challenge for my family and me of course.
I am still slowly getting over the shock of my Dx. I am married,17 years, with a 3 year old. I was in the middle of what WAS a great life, great family, great friends, stable well paying job. Everything was going so good. Now this!
I am stage T2, Gleason 6 , 3-12 slides positive for early stage non invasive cancer, PSA 8.6 max. My PSA has been stable since May '10. I wasn't informed of this May Psa by my primary for whatever reason, that's a another story! I had the psa taken in Dec. during a yearly physical and it was 8.4. This led to my biopsy.
I meet with my urologist next Wednesday and a radiation oncologist Friday. In the meantime I am researching what direction to take and what Dr. is the most capable. I am leaning heavily towards prostatectomy, by regular surgery or da Vinci. I have not decided.
It's not hard to find info, but it is hard to conclude who and where the procedure will take place...PLEASE assist me...PLEASE!!! Guys my son is 3...3 years old! I MUST LIVE...I MUST LIVE LONG...FOR HIM IF NOTHING ELSE!!!
THANKS for any support you can give!
Hi Mholiday2:
I'm sorry to hear that you've now gained membership in a club that no one wishes to join. However; if this shocking news (diagnosis prostate cancer) can be temporarily put aside, there is ample room for a sense of optomisim coupled with an opportunity for a long and productive life. I would add that I fully agree with the comments echoed by Johnt1 regarding your risk factors-"as being low". The suggested reading material will also be instructive in terms of allowing you to get a better handle on your situation, and further assisting you in your future decison making process. Unfortunately, all interventional techniques have some significant side effect risks associated with the procedure-a radical has two significant risks that include: possible incontinence, and sexual impotence. Another option that you might want to consider is the option of "active surveillance". Probably the longest running program (15 years duration) is headed up by Dr. Lawrence Klotz in Toronto, Canada. You can Goggle his name + active surveillance and a great deal of information will pop up. Another good source for information gathering is PubMed. Finally, undoubtedly the most knowlegeable person on this site is Jim-his handle is IADT3since2000. If you don't hear from Jim, I'd make a concerted effort to contact him.
With all best wishes for the future.
Yours truly,
pretty12d
Thanks for your prayers and the info. Finding the most "gifted" surgeon for my procedure is by far the most daunting task of this journey. Nevertheless, I'll take on the challenge for my family and me of course.
My suggestion, try to select a surgeon with "plenty" of experience. Even if you have to travel a long distance to find a surgeon who has a fantastic reputation, it's worth it. My surgeon had over 900 daVinci surgeries under his belt by the time he got to me. He's a professor and he actually teaches the daVinci procedure and travels to hospitals all across America to train urologists on the daVinci procedure. If you have to spend money for airfare and hotels and car rentals just so you can get to an experienced surgeon, it's the best money you'll ever spend. That's my opinion.
My suggestion, try to select a surgeon with "plenty" of experience. Even if you have to travel a long distance to find a surgeon who has a fantastic reputation, it's worth it. My surgeon had over 900 daVinci surgeries under his belt by the time he got to me. He's a professor and he actually teaches the daVinci procedure and travels to hospitals all across America to train urologists on the daVinci procedure. If you have to spend money for airfare and hotels and car rentals just so you can get to an experienced surgeon, it's the best money you'll even spend. That's my opinion.
I have no qualms with travel to be in the best surgeon's hands, but where do I begin? There's no clearinghouse of info on prostate cancer surgeons as far as I can tell. I am Very proficient on the Internet so obviously I start there, but I guess it's all in how string my search queries. I'm in NC.
I am currently reading Dr. Wash's book with more on the way! Thanks to everyone who have responded!
I have no qualms with travel to be in the best surgeon's hands, but where do I begin? There's no clearinghouse of info on prostate cancer surgeons as far as I can tell. I am Very proficient on the Internet so obviously I start there, but I guess it's all in how string my search queries. I'm in NC.
I am currently reading Dr. Wash's book with more on the way from Amazon! Thanks to everyone who have responded!
My surgeon was David B. Samadi M.D.
If you are considering surgery, especially daVinci robotic surgery, you might want to do an internet search for "Robotic Oncology".
Maybe you could give him a call on his toll free number.
I have no qualms with travel to be in the best surgeon's hands, but where do I begin? There's no clearinghouse of info on prostate cancer surgeons as far as I can tell. I am Very proficient on the Internet so obviously I start there, but I guess it's all in how string my search queries. I'm in NC.
I am currently reading Dr. Wash's book with more on the way! Thanks to everyone who have responded!
Clearinghouse? I'm sure those who had prostate surgery, as well as those who chose a different treatment method, are happy to share their experiences with you. You are correct, there is no clearinghouse that rates doctor performance or treatment outcomes. There are only opinions and experiences. Over the years I have found that this forum is about sharing stories of those who have gone "down the road" before you and can share their experience and tell you what's in store and what to expect on a day by day basis. I would never tell you that my treatment choice was the best choice. What worked for me may not necessarily work for you. I can only give an opinion based on what happened to me. If you are looking for guarantees regarding outcomes, I don't think you'll find it here.
Did any of you have a second opinion when it comes to reviewing your biopsy slides? It is recommended in Walsh's book. Of course, to one make sure you have PC and two to make sure it's properly staged. How does that work? Are the pics just sent to another pathologist?
I have not met with my urologist since my Dx, last Tuesday, so please excuse all my questions. I meet with him Wednesday and on Friday I meet with a "Radio Onc".
Welcome to the board! You have already received a lot of good advice, so I'll just add a few thoughts at this point, in green, starting with active surveillance.
I'm a big fan of active surveillance for newly diagnosed, low-risk men, and I noticed that option had already been mentioned. However, it is very important that the patient's case be suitable, demonstrating low-risk in all areas. Your case appears to fit, despite your young age. However, there is controversy about age, and a majority of leading centers would probably still want to see active intervention for someone aged 43. Dr. Klotz would be watching your case very carefully, and he might not be comfortable with your having three positive cores at such a young age.
The most experienced AS expert was already mentioned, Dr. Klotz, a leading surgeon from Toronto. The best advice for laymen on AS is in "Invasion of the Prostate Snatchers", mentioned by JohnT.
You can find AS programs at major centers, especially surgery centers for PC, including, in the US, Johns Hopkins in Baltimore, Memorial Sloan Kettering in New York, UCSF in San Francisco, and MD Anderson in Houston. There are many other smaller AS programs, but I have not heard of any in NC. Duke and Wake Forest are likely possibilities.
AS is not a "do nothing" option. Ideally the patient uses lifestyle and mild medication tactics to help his cause. If you put some of these tactics to use and your PSA dropped, it would be a good sign that AS was a reasonable option.
Quote:
Originally Posted by Mholiday2
Did any of you have a second opinion when it comes to reviewing your biopsy slides? It is recommended in Walsh's book. Of course, to one make sure you have PC and two to make sure it's properly staged. How does that work? Are the pics just sent to another pathologist?
The experts I know of all highly recommend a second opinion of the biopsy by an expert, unless the initial review was by an expert. The Primer covers this well. Usually the slides with the stained slices of the cores are sent to the expert.
Quote:
I have not met with my urologist since my Dx, last Tuesday, so please excuse all my questions. I meet with him Wednesday and on Friday I meet with a "Radio Onc".
You guys are a big help!!! Thanks![/QUOTE]
You've had a lot of good advice on the surgery option. Modern radiation, especially including brachytherapy by an expert, also appears very attractive based on research. The Prostate Cancer Treatment Center has informally published research on all treatments that was conducted as a search of studies by the Prostate Cancer Results Study Group. Their results are in color, showing freedom from recurrence at the average years of follow-up for the study, using different symbols for each treatment. I'm impressed with the brachytherapy results both for low-risk men (and men with other risk levels) and long-term. The brachy/EBRT combo, at least in expert hands, is also a choice with very solid results. It's not that surgery is not a good choice, just that there are other choices that deserve consideration.
Regarding books, in addition to the ones already recommended, "Beating Prostate Cancer: Hormonal Therapy & Diet," Dr. Charles "Snuffy" Myers, MD, is arguably the best on diet, nutrition and lifestyle tactics. Dr. Walsh's book is excellent on surgery, but an edition I have is not good on hormonal therapy.
Regarding hormonal therapy, primary hormonal therapy delivered as a single course for about a year, most especially triple hormonal blockade with finasteride or Avodart for maintenance, is also an option, but not one many men are following. Dr. Scholz and Dr. Robert ("Dr. Bob") Leibowitz (different practices) are among those with the most experience with it. It is rarely curative, but gives an impressive level of control, low or no side effects after a few months of recovery following cessation of the heavy duty drugs (typically), gains time, and leaves options open for all other treatments should the patient later elect to go for a cure. (I have been on an intermittent version of triple blockade for my challenging case for more than 11 years now, and I'm doing very well.)
I hope you are beginning to get over the shock. It can take a while.
Did any of you have a second opinion when it comes to reviewing your biopsy slides? It is recommended in Walsh's book. Of course, to one make sure you have PC and two to make sure it's properly staged. How does that work? Are the pics just sent to another pathologist?
I have not met with my urologist since my Dx, last Tuesday, so please excuse all my questions. I meet with him Wednesday and on Friday I meet with a "Radio Onc".
You guys are a big help!!! Thanks!
Hi Mholiday2
I've had two recurrent episodes of prostate cancer within the last three years. In each instance the biopsy was originally performed and read at a local community hospital. Subsequently, when I went to a specialized cancer centre they repeated the biopsies in both instances. I definitely think that it would be a good idea for a pathologist who specializes in the diganosis of cancer(s) to read your tissue slides as they have a greater degree of expertise in this area.
You are asking good questions-I'd encourage you to continue to do so. I'm confident that the follow up replies that you receive will be both informative and helpful.
Good luck!
pretty12d
Well I'm still researching and I've read the latest hospital rankings on US News. Since I am in NC, it looks like Duke Medical Ctr. is ranked # 7 in Urology and # 12 in Cancer. I guess I'll begin there. I meet with my uro tomorrow and I've already discussed with his assistant about sending my biopsy slides to Duke. I am also interested in Memorial Sloan-Kettering Cancer Center and Johns Hopkins, but I am certain they are both booked up. Who knows where I'll end up, but I'm slowly leaning towards non robotic RP. Walsh's book can account for this persuasion.
I have no idea what my insurance company has to say, but I do have "good" insurance. I'll cross that bridge at that time, but I do know this ain't gonna be done on the cheap!!!
Anyway, I am taking to this fight like my life depends on it....because it does!!! I just gotta see my son mature to be a grown man, retire, travel with my wife. During this long journey I may fall down, but my will to achieve those three things will inspire me to to get back up over and over and over again!
I am still slowly getting over the shock of my Dx. I am married,17 years, with a 3 year old. I was in the middle of what WAS a great life, great family, great friends, stable well paying job. Everything was going so good. Now this!
I am stage T2, Gleason 6 , 3-12 slides positive for early stage non invasive cancer, PSA 8.6 max. My PSA has been stable since May '10. I wasn't informed of this May Psa by my primary for whatever reason, that's a another story! I had the psa taken in Dec. during a yearly physical and it was 8.4. This led to my biopsy.
I meet with my urologist next Wednesday and a radiation oncologist Friday. In the meantime I am researching what direction to take and what Dr. is the most capable. I am leaning heavily towards prostatectomy, by regular surgery or da Vinci. I have not decided.
It's not hard to find info, but it is hard to conclude who and where the procedure will take place...PLEASE assist me...PLEASE!!! Guys my son is 3...3 years old! I MUST LIVE...I MUST LIVE LONG...FOR HIM IF NOTHING ELSE!!!
THANKS for any support you can give!
At 43, I'd guess your cancer is in the very early stages. However, that's only my guess. I was lucky like that, even at age 57, my cancer seems to have been confined within the prostate gland. Could a cancerous cell or two have gotten loose and made it unto my blood stream and traveled to other parts of my body? Yes! Absolutely! This month marks four years since my daVinci surgery that I've had zeros for PSAs. My attending urologist (not my surgeon) says he'll keep seeing me for another year and then he'll release me back to my primary care doctor for all future PSA tests. Only my opinion but, today my prostate gland is out of my body and it's in a trash can somewhere. That's comforting for myself and for my family. Again, I can't speak for others and the success or failure of their treatments, I can only speak for myself. I'm the type of person that will not mess around with it. If it's cancer, I want it gone! As quickly and with the best experts possible! Money was no object! However, that's just me. Only my opinion.
QUESTION: How proactive were you in having PSA tests? Yearly? Every six months?
The reason I ask is because my primary care doctor was very proactive with testing me for prostate cancer. Once he knew that my dad died of the disease, he tested me every 3 months. At the slightest sign of any movement in my PSA readings, he had me go to visit a urologist. He made sure this urologist was very highly recommended and was highly regarded by his peers. I believe that my primary care doctor's vigilance is the reason I'm alive today!
Did any of you have a second opinion when it comes to reviewing your biopsy slides? It is recommended in Walsh's book. Of course, to one make sure you have PC and two to make sure it's properly staged. How does that work? Are the pics just sent to another pathologist?
Greetings! I'm glad you're focusing on proper staging, as it can be vitally important. A change in the numbers can lead to a paradigm shift in treatment approaches. Because of that, getting an expert opinion on your biopsy would be helpful if the original pathology report was not done by one.
Even so, you have to be mindful that even an expert pathologist is limited by the sample. It is not unusual for the Gleason score to increase after surgery once the entire prostate can be analyzed, although one would hope this would happen far less when the initial biopsy is handled by an expert. In my case, the score went from Gleason 3+4 to Gleason 4+5. That made a huge difference treatment considerations.
Of course, the Gleason score is just part of the equation. PSA velocity, percentage of cancer and extra capsular extension also play a role. Another vital question when considering surgery is the location of the cancer in your prostate and the likelihood of post-surgery positive margins. If the cancer is in the apex, you are almost guaranteed positive margins, which is a high-risk factor giving you only a 50% chance of cure (assuming no other high-risk factors). I'm not sure how open surgery compares to robotic for handling positive margins. I did see a recent article that described how robotic surgery should be performed to obviate apical positive margins, so if you have apical cancer and get an experienced surgeon aware of that procedure, your chances would be better.
As a final comment, since you are still considering options, only surgery lets you find out what is really going on inside your body. When they pull out the prostate and nearby lymph nodes, they can, for the most part, see the actual state of your cancer. They will certainly know about your true Gleason score, and if the cancer has burst the capsule or spread to the local lymph nodes, seminal vesicles, etc. That won't rule out spread to pelvic lymph nodes, which won't be sampled, and they won't be able to spot micro metastases, but you will know far more than if you had simply to rely on a biopsy and scans.
My focus was not so much on getting the cancer out, but finding out what was really there. I'll also add that I had other prostate issues that militated in favor of surgery. In my case, which probably is not typical, after surgery my Gleason score jumped and the biopsy found possible lymphoma in the removed lymph nodes, both of which I would not have known about without surgery.
Still, assuming you have reliable information about the state of your cancer, Jim's arguments can be quite persuasive.
Just Dx'ed 12/28/10 & I'm only 43 yrs old 
