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Newly Diagnosed with PCa. 2 Core Samples Pos. Gleason = 8

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Posted 8/16/2013 7:54 PM (GMT 0)
I just recently had a prostate biopsy and 2 core samples out of 12 came back positive with Adeno. My Gleason was 8 and Capra was 7.
Met with my Urologist 2 days ago and we discussed IMRT, Cryo and Da Vinci assisted surgery. He has done around 400 using the Da Vinci.
I was leaning toward the Cryo as it completey destroys the gland and nodes, but my
Urologist wanted me to have the surgery so he could look at my prostate and find out if the Ca had spread more since the biopsy in order to know if further tests might be required. I guess I am doomed to got with the big gun after visiting with my family and friends and getting their opinions.
I would very much appreciate any recent veterans of this surgery to let me know what their time of recovery was and when they were able to get back to work. I was told around a month, but I'm sure that this varies with how you fast you heal etc. I will be 66 in a few weeks, and have had no symptoms. Prostate was close to normal size, with no dysuria. PSA Was 4, two years ago, and went from 6 to 13.3 in 30 days in June and early July. That's why I had the biopsy done. Hope that's enough info for someone to advise me as to their experience post op. Thank You very much for sharing any info that could be of help to me just knowing what to expect post op.
Posted 8/16/2013 8:19 PM (GMT 0)
Sorry you have to be here, but glad you found us!  You've come to the right place, for sure.

You're about to learn a lot from some of the people on this forum.  Great group of guys, with lots of good advice from those who've been there.  Any and all questions are welcomed.

Hang in there!  You have good options and good reason for hope and a positive spirit.

Posted 8/16/2013 8:26 PM (GMT 0)
RubberDoc, I had stats similar to yours, including age, when I was diagnosed. I choose daVinci surgery over radiation therapy because I wanted the results from the post-op pathology report. I was glad to get those results because they were better than I expected or hoped for. The surgery itself was pretty unremarkable - no pain at any time afterwards. I was of course stitched up and wore a catheter for 10 days. I was retired when I had the surgery but, had I still been working, I would have been able to go back to work within a month of the surgery.

The only issue that would have been problematic for me with regard to work after surgery was: incontinence. I leaked badly, initially 6-8 pads per day. Anytime I bent over or picked something off the floor, I leaked heavily. Almost 2 years later, I still have incontinence although it's down to 3 pads per day. I suffered from BPH for more than 10 years before the surgery and the path report showed I had a very large prostate. I think that has made it difficult for me to regain continence. So, you may want to think about whether heavy leaking (and changing pads) will be a problem during your work day. I hope you don't have that problem to the same degree I did - I wouldn't wish it on my worst enemy. Maybe you'll be among the lucky men who are continent again within 3 months.

Good luck to you on your decision and which every way you elect to go to rid yourself of the demon PCa! I hope you get the best possible outcome.

Mike
Posted 8/16/2013 8:36 PM (GMT 0)
Hey Rubberdoc,
Sorry you have to be here, I'm sure there will be more qualified folks that will share as well, but I will share with you what I can. I was advised to have surgery upon my diagnosis and sought a second opinion that confirmed the first opinion. I think I was feeling better about a month out. My wife was very helpful and pressed me to walk at a local mall, shopping carts were a big help. I really can't tell you much about other methods but I'm sure others more familiar with other methods will share. Where do you live? Just remember, there's plenty of support here.
Posted 8/16/2013 9:20 PM (GMT 0)
Dang, I hate it when new members need to join our club, particularly when they're high-risk like I am. That said, you'll get lost of great advice and support here. So here's a few thoughts:

1) If you haven't already, read Casey's sticky thread at the top for the newly diagnosed.

2) Get a second opinion on your biopsy slides. On first read, I was a Gleason 8 but the experts re-classified me as a Gleason 9. If it had gone the other way and I was a Gleason 7, I might have chosen a different treatment option. Go to the best for this: Casey's thread gives you the names for this.

3) Find a medical oncologist that specializes in prostate cancer. There's not a lot of those, but you want to find someone on your team with the best, broadest and unbiased opinion on treatment options. If they're not near you, many will do a phone consult. (My guy, Dr Lam here in Los Angeles is great, but there are others.) Keep in mind that urologists are surgeons, so it's not a surprise yours is recommending surgery. I'm not saying that's not your best best option, but wouldn't it be great to hear that from an unbiased expert?

On a personal note, I had originally planned to have surgery, but instead opted for the triple play of brachytherapy, external radiation and hormone therapy. As a high-risk guy like you, there was about a 50-50 chance that I would need salvage radiation after my surgery and then I would have had to put up with burden of surgery side effects PLUS radiation side effects. And the research suggests the combination play is just as good as surgery (and arguably better) for high-risk patients. You may have a different thought process about what's important (everyone's different here), but that was mine.

All the best to you as you go through your journey. I'm confident that in the long run you'll be fine. You can beat this thing!

Michael

Post Edited (Michael_T) : 8/16/2013 3:30:17 PM (GMT-6)

Posted 8/16/2013 9:26 PM (GMT 0)
Hi there,

I had my da Vinci surgery in Nov. 2011 and felt no real pain at all afterward -- just some "complaining" from the external abdominal stitches where the ports went in, and this only happened if I tried to get up from laying on my back. No pain at all from just sitting, standing, walking, etc.

No pain with the catheter either, both with it in and as they removed it. No pain when the abdominal drain tube was removed the morning after surgery.

You cannot lift more than 10 pounds during the first month after surgery, then you can gradually add to this as time goes on. After 2 months (and no more than three), you can do pretty much whatever you wish.

I was virtually fully continent within 4-5 weeks after surgery and only needed one pad a day before then.

Every patient and every case is different, of course, but my description is probably representative of a typical da Vinci patient. The REAL key is EXPERIENCE. If your surgeon has done 300+ it should be okay.

Good luck if this is the route you take,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 8/16/2013 9:59 PM (GMT 0)
recovering from surgery was a lot easier than I had anticipated. Nothing scary about the process for me while going through it, almost uneventful in many regards.

If you are set on surgery (if), I'd interview a few more surgeons and ry to find one from a center of excellence who has conducted thousands and compare them and how you feel about them after chatting. You get one shot at this, make it count.

Sorry you had to join us.
Posted 8/16/2013 10:13 PM (GMT 0)
Thanks so much for this wonderful group of supporters and your quick posts for me. I didn't really want to go the surgery route, but, between my Urologist (who I am sure would like to treat this in a way that will keep him in the flow), I am hoping he is being unbiased in his choice. We did talk about Cryo and IMRT as I mentioned, but the fact that he could have that gland in his hand after surgery and know if it has spread more, gives me a feeling of well being at least. I have not had any symptoms at all. Prostate was not enlarged, no BPH, no nothing. Just a rapid rising PSA. My Doc has done a ton of Da Vinci's so I feel confident that he won't have to say "Whoops" during the procedure :). I am a Pharmacist and work both retail and Hospital pharmacy 6 days a week. It's going to be rough to be out of work for a month since I'm not a full time person at either place, and I don't have any paid time off or disability insurance since they dropped it at age 65 (how nice). Anyway, I'm hoping since my prostate wasn't huge, I may get by with a less lengthy period of the incontinence problem, which really puts a damper on trying to be a Pharmacist for sure. I am very glad that I found this group of supporters who have been through this or are just finding out that they will have to deal with it like I am.
Thanks Again to all!
Posted 8/16/2013 11:34 PM (GMT 0)
Sorry you're here and you'll probably be sorrier after I've confused the issues for you.

Gleason 8 is considered to have a "high risk of recurrence" after radical treatments, which have typically been surgery and radiation. The best odds for a man in your status is a combination therapy with ADT+brachytherapy boost+IMRT. All three parts of that combo serve a purpose -- the pre-therapy ADT makes the cancer cells easier to kill, and post therapy cleans up a few stragglers; the brachy boost (either LDR(seeds) or HDR(temporary) deliver a high dose of cancer killing radiation where it's most needed, and the IMRT kills any cancer cells that have escaped to the local area.

Surgery will only be curative if all of the cancer cells are contained -- not all that likely with a Gleason 8. If some have escaped, you will need follow-up radiation, which carries worse side effects than if you'd had IMRT to begin with.

Cryo carries high rates of recurrence and high rates of ED -- I don't know why it's even being recommended here. It's often reserved for older men and for salvage or focal therapy.

After you've had a second opinion on your biopsy slides (try Bostwick or Epstein). I suggest you talk to an RO who does combo therapy. Where are you located?

- Allen
Posted 8/16/2013 11:44 PM (GMT 0)
hello rubber,

My next door neighbor is the only person I know first hand that chose Cryo. He was a minimal Gleason 6. Due to many previous surgeries, they ruled out surgery for him, and due to multiple radiation events, he was ruled out for radiation (he had stomach cancer at one point).

He did well with the Cryo. He was only down so to speak, for 2-3 days after, and was sore sitting down for perhaps 2 weeks. He has been pulling zeros ever since.

However, I would not recommend Cyro for a Gleason 8 like yourself. There is a high failure rate compared to either surgery or radiation as a primary treatment.

Take your time studying your options, you only get to choose once. We are here to answer any and all of your questions, so fire away.

Good luck, we are here for you

David in SC
Posted 8/17/2013 1:59 AM (GMT 0)
Welcome aboard RubberDoc.
I had Da Vinci surgery 1 year ago. In the hospital 1 day. I was on a catheter for 6 days and off work for 3 weeks. I felt well enough to go to work after 2 weeks but since my business was slow during the summer, I stayed out 1 more week. No lifting anything heavy for 6 weeks. No driving until the cath is out.
I am a in retail sales and am on my feet quite a bit as I expect you are also. I was going through 6-8 pads for the first few months. I am still using 2-3 pads a day. Like Mike, I had a large prostate also and feel that has a lot to do with not being continent quickly like a lot of guys.
I chose surgery because I wanted the cancer out and I had radiation to fall back on if I had recurrence later. I also wanted a post-op surgical pathology report. That is how we found I was a Gleason 7 NOT a Gleason 6 like the biopsy showed.
I had no symptoms either at the time of diagnosis. Just had a routine yearly physical and we discovered the cancer then. I have had an enlarged prostate years ago. So you don't always have to have
symptoms to be DX with PCa.
I would recommend a surgeon with at least 1,000 surgeries performed. They know more of where to cut, what not to cut and how much to cut.
There are no do over's and it is your body so if your uro gets upset because you picked someone more experienced, that is his problem not yours. When we asked my uro who he would have perform the surgery if he had PCa, he didn't hesitate to mention the surgeon who I eventually had do mine. My surgeon had done over 5,500 at that time. My uro wouldn't have picked one of the other uro's in his office.
I don't know where you live but sometimes you have to travel to get the best.
Being a surgery guy, that's my take. Good luck with your decision.

Bill from Florida cool
Posted 8/17/2013 2:45 AM (GMT 0)
Rubber,
We all have made choices, many based on our lifestyles, that we thought was the best. I reviewed success rates and rates of incontinence and ed and made my choice based on that and the NCCN guidelines at the time. My choice was simple since my urologist said that non-sparing surgery would be performed with extra margins removed..I guess that closed the deal for me since I also didn't like my chances of not wearing diapers or pads the rest of my life.
Since I would have required radiation anyway due to extra capsular extension, I decided to do it right the 1st time with 44 short treatments of imrt radiation and hormones..I'm satisfied..No pads and talk to me in a year about ED-lol..
Bill
idea
Posted 8/17/2013 10:57 AM (GMT 0)
RubberDoc, welcome to HW but sorry you have to be here. You stated that you hope your urologist is unbiased and I hope that as well. However, you should consider that he is likely a trained surgeon and will have a bias in favor of surgical treatment...it's just a common sense item that you should consider (I'm not picking on surgeons...it's likely that radiation oncologists would generally have a preference for radiation). You, on the other hand, should look for a broad list of options and should "interview" multiple practitioners before you decide on a treatment.

Beyond that, I would encourage you re-read the above posts from MichaelT and Tall Allen which mirror advice that I would give.

Jim
Posted 8/17/2013 12:18 PM (GMT 0)

gunfighter said...
Rubber,
We all have made choices, many based on our lifestyles, that we thought was the best. I reviewed success rates and rates of incontinence and ed and made my choice based on that and the NCCN guidelines at the time. My choice was simple since my urologist said that non-sparing surgery would be performed with extra margins removed..I guess that closed the deal for me since I also didn't like my chances of not wearing diapers or pads the rest of my life.
Since I would have required radiation anyway due to extra capsular extension, I decided to do it right the 1st time with 44 short treatments of imrt radiation and hormones..I'm satisfied..No pads and talk to me in a year about ED-lol..
Bill

gunfighter, my treatment decision choice parallels your path very closely.  My urologist oncologist also said he would have to do a very wide excision, without any "luxury" things like nerve-sparing.  Instant and permanent complete ED, likely serious incontinence, and quite low probability of being curative, quickly ruled out surgery.  The NCCN guidelines for those unfortunate enough to have these factors still suggest the same choices.  I've read elsewhere that you had a negligent doctor that didn't diagnose sooner.  Mine was found late too, but no doctor to blame.  My brief stint of non-screening for PSA from age 52-54 seems to have been poorly timed.  At 55, my diagnosis was pretty severe, and led me to the same choice of IGRT/ADT2.  I'm scheduled for 2 years of ADT2.  As you say, we'll see in a year or two what unpleasant SEs crop up.  Right now, life is pretty good!  (By the way, does anyone know why quoting another poster sometimes traps the response like this, as also part of the quoted text?)

Posted 8/17/2013 11:18 PM (GMT 0)
Hi Rubber

I m oso a newbie here, 2 weeks post surgery. Gleason 9. Well the thought that came to my mind when coming to my choice of starting the treatment... RP or RT.... Yah..I opt for the aggressive treatment to this aggressive stage.

I m still waiting for the post surgery Pat's reports...supposed to be out on Friday, guess the urologist/surgeon is busy he didn't make arrangement to see me.

Pain, I think each individual tolerance level ain't the same. I took painkiller only on the 1st day after surgery. 2nd day onwards, there still pain but bearable. I was discharged on the 2nd day after the 'drain' was removed.. But do take care when you cough or sneeze, get a fold towel to press on the tummy to bear the pain.

My catheter was removed on the 10th day, coz on the 7 days onwards my country was having a long week-end holidays 08/08 to 11/08. Hmmm, after the catheter was removed, I was requested to take a 'flow' test & had to drink  4 glasses of water. After a while, the leak was bad, the whole pad was soaked b4 I can take the 'flow' test. Had to drink another 2 glasses  and done... the 'flow' test not too bad.

ATM I m doing the pelvis floor exercises daily - advised to do 60 times a day by the RP's nurse.  It did help the control the incontinence a little. After the 3rd day, I m using 2 pads a day. Yah, I walked 2 miles & drank 6 glasses of water minimum daily.  Base on the placing, I think should be back to work after the 3rd week.

Hope my story can help you a little on your choice.

Take care, all the best....

Posted 8/17/2013 11:30 PM (GMT 0)
We always welcome new members while at the same time wish they did not have to be here like us.

My situation is a little different with confirmed bone metastasis. So Hormonal Therapy as long as my PCA remains in check without the testosterone is my current treatment plan with no surgery, seeds, radiation chemo etc in short term.

However I would concur with the others who say to have a team of urologists (second opinion always a good idea), a radiation oncologist and a medical oncologist not all from the same practice either.

The medical oncologist from a national cancer center would likely be the least biased as to surgery versus radiation, not being the hammer who sees all problems as if they were nails waiting to be hammered.

I am not anti DaVinci surgery at all, as most I know who have had it were satisfied. Just take your time since you have some time to decide.

If you give us an idea what area of the country you are in, someone here can surely recommend doctors they were pleased with in each discipline.
Posted 8/18/2013 12:01 AM (GMT 0)
I was a Gleason 8 and chose surgery a little over 5 years ago. Right or wrong, I chose surgery so I could have radiation if I have recurrence of cancer in the future.
Posted 8/18/2013 3:13 PM (GMT 0)
I am also a Gleason 8 . I choose to do RRP surgery to try to get a " cure "(clear margins). I had cath out in 1 week and went back to 1/2 halftime work in 2 weeks. Regained continence in 6 weeks and because I had EPE and positive margin(stage 3 Ca) (even though PSA undetectable after surgery) I opted for IMRT and Lupron tx . I resumed 80% work schedule after 1 month after surgery. I have opted to continue 80% work schedule so I would have more time with my wife. I am regaining erection function 1 year after surgery with help of Cialis. I am still on Lupron and will be on it for another 6-12 months.I expect better erectile function once I am off lupron and testoterone has recovered. I was 63 at time of surgery 2012. I have worked hard with diet and have lost weight during my lupron tx. Change in diet is essential for treatment of PCa. I could have started with IMRT but I was hoping for "cure" but am glad to have removed the bulk of the cancer. PSA continues to be undetectable. Hopefully I will have no micromets. This is the way I approached my PCa but there is no right or wrong way. Just need to do what you are comfortable with. James
Posted 8/20/2013 6:09 PM (GMT 0)
Once again, I want to thank all of my Forum Friends for leaving me many very useful posts here. My date with Doris Da Vinci is only 9 days away, but I guess I still have a chance to change my mind about that route if I hurry. I wanted to add a few specific details from The Bostwick Lab results. I would like to be able to scan and post the results on this forum, but I don't see that there is a way to do that. Here are some particulars that might help some of the veterans be more informed about my exact results. I will be 66 y/o on 09-07-2013. PSA at time of biopsy = 13.3 (was 4 two years ago, 8 three months ago and 13.3 on July 2nd) DRE = normal, Prostate enlargement = non-remarkable. Left Apex contained 2 positive specimens with Adenocarcinoma, (Gleason Score 4 + 4 = 8) involving 80% for the specimens. Cancer Length = 1.52cm.
UROPREDICICT (tm) Bostwick Labs Staging System: Probability (%): Organ Confined----54%, Extraprostatic Extension-----46%, Seminal Vesical Involvement----11%.
I live in Morrilton, AR, which is around 45 minutes from Little Rock, AR. There are several large medical facilities there incuding UAMS (University of Arkansas for Medical Sciences). Home of UAMS Hospital (a teachinig hospital also, UAMS Medical School, UAMS College of Pharmacy (where I graduated from in 1971) and UAMS School of nursing, along with several other medical related schools and well as post BS degree schools, for Masters Degrees and PhD degrees in Medical studies.
There is also St. Vincent Infirmary and the Baptist Medical Center. All have Radiation Oncologists. including, I'm sure, IMRT Typical External Radiation Therapy, Possibly Proton Radiation (not considering) as well as specialists in the other fields of treatment options for PCa, re: Brachytherapy, ADT, etc.
I read of so many post treatment incontinence issues, and I wonder if there is a place here for a Texas Cath rig with a leg bag to take the place of all of those pads/ Do any of you veterans have any thought on this? Thanks again for all of your input. HW Rocks!! Jimbo
Posted 8/20/2013 6:59 PM (GMT 0)
Hi RubberDoc/Jimbo and welcome here from me as well.

With your added details (Probability (%): Organ Confined----54%, Extraprostatic Extension-----46%) I would lean even more towards the input you got from Tall Allen in an earlier post:

"Surgery will only be curative if all of the cancer cells are contained -- not all that likely with a Gleason 8. If some have escaped, you will need follow-up radiation, which carries worse side effects than if you'd had IMRT to begin with."

So then I guess my input FWIW would be leaning very strongly towards the combination treatment/approach of ADT+brachytherapy boost+IMRT. IMHO I don't see what surgery would buy you other than having to deal with those side effects as well.

At the end of the day it's still got to be your decision - but since you asked for input as you've seen you'll get plenty here!

Best of luck to you.
Posted 8/20/2013 7:06 PM (GMT 0)
I would echo what Yoop said and, in fact, that was my thought process in the post I made earlier in this thread. FWIW, I cancelled my surgery about two weeks in advance and really struggled over the idea of canceling it so late. I felt like it was bad form and bad karma, although the folks here quickly disabused me of that notion.

That's not to say that surgery may still feel like the right decision to you. Just figure there's a decent chance that you'll need salvage radiation afterwards. Whatever you choose, we will be rooting for you!
Posted 8/20/2013 7:40 PM (GMT 0)
What Yooper and Michael T said...

Jim
Posted 8/21/2013 1:02 PM (GMT 0)
Hi RubberDoc,
This is one of the hardest decisions you will have to make in this lifetime. But whichever treatment you do choose, I wish you the best. As a GS8, I felt there was too great of a chance that some of the cancer might have escaped the gland. Although my urologist kept reassuring me that it was probably all contained and felt surgery was best option. It seemed to me that radiation was a better option and allowed for more of the margins to be treated, just in case some cancer had started to get out. I see in your post that you are not considering proton therapy. I did choose it because I felt there was less chance of radiation induced secondary cancers. With that said, I have to agree with Yooper and Michael_T and think ADT along with radiation would be the way to go. There are a lot of ways to kill this beast, it is just hard to know what is best for you, and only you can make that decision. Once you make that decision, be at peace with it, and move forward. There are no do-overs.
Regards,
Kris
Posted 8/22/2013 6:11 PM (GMT 0)

Tall Allen said...
Sorry you're here and you'll probably be sorrier after I've confused the issues for you.

Gleason 8 is considered to have a "high risk of recurrence" after radical treatments, which have typically been surgery and radiation. The best odds for a man in your status is a combination therapy with ADT+brachytherapy boost+IMRT. All three parts of that combo serve a purpose -- the pre-therapy ADT makes the cancer cells easier to kill, and post therapy cleans up a few stragglers; the brachy boost (either LDR(seeds) or HDR(temporary) deliver a high dose of cancer killing radiation where it's most needed, and the IMRT kills any cancer cells that have escaped to the local area.

Surgery will only be curative if all of the cancer cells are contained -- not all that likely with a Gleason 8. If some have escaped, you will need follow-up radiation, which carries worse side effects than if you'd had IMRT to begin with.

Cryo carries high rates of recurrence and high rates of ED -- I don't know why it's even being recommended here. It's often reserved for older men and for salvage or focal therapy.

After you've had a second opinion on your biopsy slides (try Bostwick or Epstein). I suggest you talk to an RO who does combo therapy. Where are you located?

- Allen

Sorry about being slow getting back to some of your questions Allen. I think I answered some of them in a reply post on Aug 22nd

Bostwick was the lab my core samples were sent to. Should I have them sent to Epstein also? Will Medicare B pay for another labs test?
My surgery is only 7 days away now, so don't have much time for more testing. I am just praying it hasn't spread since the original core samples were tested. Thanks so much Allen!
Jim
Posted 8/22/2013 6:31 PM (GMT 0)
Just one or the other is fine.

It sounds like you're committed to the surgery route -- I hope it is well-contained, they get every bit of it, and the side effects are mild. I'll be thinking of you - please write and let us know.

- Allen
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