Hello to all of you out there. I've been reading the site for a week now, since my diagnosis on May 5. I find the information on the site both useful and comforting. At this point I am looking for information based upon your experiences.
A brief history is that in 2006 I went to the urologist because I thought I recognized blood in my urine. I went to the urologist who years ago performed prostate surgery on a close friend and also has two other patients that are friends. I had a cystoscopy to rule out bladder cancer (which my father died from) a CAT scan of the abdomen and a PSA. Again this was two years ago. I was relieved that the cystoscopy did not reveal any problems and awaited the results of the CAT scan and the PSA. I thought there would be some negative findings with the PSA, i.e. high PSA. However, a 1cm growth showed up on my right kidney and rather than watch it as was suggested, I had part of the kidney removed. After surgery my blood pressure dropped and they found that there was internal bleeding. So they opened me up again and stopped the bleeding. I ended up getting 5 units of blood and being on a vent . Two days in ICU. However the end result was that the removal of the 1cm growth was not cancerous, but what is known as an oncocytoma. I am sorry to give such a long detailed story about the kidney, but it all connected. My PSA at that was 3.1.
In 2007 the PSA went to 4.4, but on a retake a couple of weeks later it went down to 3.2 (however the free PSA was 8%) but my uro guy said not to worry about the free PSA as it is only used if the PSA remains over 4.
This year I refrained from any activity that could artificially raise the PSA, but it came back as 4.2. At that point I requested and received a biopsy the next day with that data of Gleason 6 and T1C. In addition two (2) of the twelve (12) needles used in the biopsy showed positive. The uro guy told us that one showed 0.4mm and the other 4.4mm. Indeed, the results took longer than usual because they used additional staining.
Three of my closest friends including my brother-in law have all been diagnosed. One nine (9) years ago and the other two in the past twenty-four (24) months. The first guy had the conventional surgery, my brother-in-law had the seeds and the other friend had the robotic surgery. Thus I am weighing each option and in addition I scheduled a stress test because about a month ago I had some thumping (may muscle spasms on the right side of my chest. EKG showed borderline abnormal but the ultra sound turned out excellent, showing no coronary problems. To be safe I scheduled a stress test for this Thursday.
Here are a couple of questions that I have:
-With regard to Watchful Waiting, can a color Doppler (which I heard about on our site) help verify the aggressiveness/non-aggressiveness of the finding, and if not is there anything that can. This would be comforting with the Watchful Waiting approach.
-I've read a lot about life expectancy and quality of life in dealing with PCa. I have five children, am a retired Health Systems Specialist and 61. My youngest child is 13 my wife is still working. Two other children are in college. So I'm looking for longevity. What is the ten year survival rate and the fifteen year survival rate with treatment?
-Does the seed implant necessarily provide the same prognosis as surgery for my grade of cancer?
-What are the percentages in finding a higher grade cancer after surgery as compared to the grade prior to surgery?
Gentlemen thank you for taking time to read this over. I tried to give as much info as I thought pertinent and welcome your comments.
Joe In Pennsylvania
I have not yet decided on a course of treatment. Thanks to all of you great guys for your input into my situation. I have, however, had my pathology slides sent to Johns Hopkins and have an appointment there for June 6.
In addition, a former colleague and Internist took a look at my pathology report and my stress test results. First of all the stress test was excellent. The Internist told me that many men come to him at the VA with Gleason Score of 6 and ask advice. He points them back to the Urologist, because the available modes of treatment are not only based upon the clinical prostate findings but also the patient's general health. My wife now has a clinical situation which requires some surgery for 6/16, her condition and findings of that surgery will probably help drive my decision to selection of treatment.
It's favorable for me to what are considered low numbers and if they hold up to the Hopkins review of the slides it leaves the door open to all of the treatment courses available. I thank God for that.
With regard to this site, it is a real valuable resource for me. It only provides information, first hand, but also inspiration and helps keep things optimistic.
Thanks again to all of you who have e-mailed me. Your words and the resources you point me to continue to be of great value. I am anxious about making this decision, thus this message is wordy and perhaps to long. I would appreciate hearing for anyone else, especially those who have gone to Hopkins.
Joe in PA.
Sorry for not getting back to you earlier. I had decided to have the LRR (Laparoscopic Robotic) surgery at Hopkins. It was scheduled for August 20,, however after doing more extensive research and speaking with the Hopkins boys again. It was decided that I should go for the conventional surgery based upon stats and cure rates. As of today I am awaiting a new surgery date. Hopefully a bit earlier than August 20.
I view the site quite a bit and experiences of mentors and follow-up stories also helped me make up my mind to do the switch to conventional. I'm not sure if every member goes through a period of being uncertain as to what mode of treatment to pursue, but I certainly did that. I investigated radiation of all types and decided that I would rather deal with the unwanted side effects sooner than later and that I did not want to take a chance on being in the percentage of radiation patients having to deal with rectal problems.
I found the Hopkins boys understanding and up to date on everything. Although they do such a large volume of cases, they seem to always find time to answer questions and address concerns. My local uro guy who performed my kidney surgery is also wanting to do the surgery and in a sense that would be easier for me, i.e. waiting period and travel. However, based upon Hopkins' results I'd rather stick with them, just so long as they don't have me wait any longer.
August 27, '08 I had a RRP Conventional Surgery at Johns Hopkins. This surgery was delayed one week due to my wife having had surgery on August 18, '08.
Everything seems to have gone well. My Gleason Score as raised for 3+3=6 to 3+4=7. However the pathology report showed no evidence of disease in the seminal vessels, no positive surgical margins, no extraprostatic extension. The pathology, thank God, showed organ confined disease.
I was discharged on the afternoon of August 29, and spent that evening in a hotel before departing for home in Pennsylvania the next morning. The journey home was not too bad at all. I was accompanied by one of my sons and my wife who refused to stay home and totally heal from her surgery.
September 2, '08 A call from my surgeon to review the pathology report and assure me that everything went fine. For those men on this site who are in the same situation, Gleason Score going from 6 to 7, the surgeon assured me that that is a better than having activity outside of the prostate.
September 9, '08 My local urologist removed that catheter. Thank God just a slight bit wet the first night and the next night dry. Second day after the catheter was removed some small clot came out in my urine. Per surgeon and local urologist, this is normal. Like many of us in the same situation I began thinking about recurrence and thus spoke to the surgeon and my local urologist again today 9/11 (who can forget this day in history). Both assured me that I have little chance of recurrence within the next 10 years. However there is all kind of data out there, based on actually statistics that can verify this and even tell you your chance of recurrence. My suggestion is if you have a Gleason lower than 8 and it is organ confined, LET IT GO.
My special thanks to two buddies on YANA and that would be Terry and Scott. Also thanks to all of you who shared your stories which helped me make up mind on a mode of treatment and pave the way to recovery.
Two close friends and a brother-in-law of mine have prostate cancer and I wish I would have known about YANA at the time they were diagnosed because it would have been a great help to them. I know that it was of great help to me.
So, it appears that I'm doing well with the urinary control thus far. With regard to ED, we'll have to wait a bit. However, I intend to continue on this site to help others and will update my situation periodically. I am ready to listen and give information to any man out there who needs help.
My advice initially, take your time with selecting a mode of treatment, get to the best institution you can for the treatment you select. Don't be afraid, because if you check the data not many perish from this disease compared to the number of men that have it.
God Bless and take care.
Sorry that it has been a bit of time since my last update letting you all know that the surgery at Hopkins went fine and pathologically speaking was successful.
I had my first post surgery PSA locally at just six (6) weeks. Thought that the local urologist should have waited until I reached the twelve (12) post surgery mark, but he insisted on going ahead so I allowed it and it came back undetectable.
I have a monthly telephone contact with my Hopkins surgeon and let him know the results at that time and that everything seems to be going well. I only used one pad per day for about four weeks and then needed nothing. Also the operations was nerve sparing so that was good also.
Just had another PSA again and undetectable (thank God). This local guy did this one about six weeks after the last one and the next is scheduled for July.
I have no complaints clinically or mentally. Though I did get a bit anxious awaiting the PSA results. The only limitation that I have is that the incision area gives a stabbing pain when I do physical work or exercise, but that is something that I am told will pass.
With regard to the increase I had in my pre to post operation Gleason Score (3+3) to (3+4), I can only say that I am thankful it did not go any higher. I am also told that with the disease being totally contained, the 6 to 7 Gleason should make no difference.
If anyone needs any helps with questions, I will be more than happy to help based upon my experience.
Again, thanks to Terry and Scott for the helping hands they extended to me.
[I mailed Joe asking for an update and this was his response, in part:]
I haven't updated my YANA story as of yet because I cancelled my July appointment and the uro group cancelled the last August and September appts due to their having had a retirement in that uro group. I am scheduled for the end of this month. Today however I had my 3 month telephone appointment with my Hopkins surgeon. At that time, I asked him about my pathology with regard to Tertiary Gleason scores based upon what I read on the New Prostate Link I saw on our YANA site. He tells me that I had a tertiary gleason of 4 and that in fact my post surgery gleason was 6 not 7. I was positive that he told me it was a gleason 7 after surgery, but today he said 6, so I am going to ask for a copy of my pathology report. He told me not to worry about the tertiary Gleason because everything was removed and there were not positive margins, seminal vessel invasion, or extraprostatic inolvement.
My last PSA was October of 2009 and it was 0.1, where it should be following the August 2008 surgery. I cancelled my local urology appointment this past May, but plan to continue monitoring later this summer.
While each of us decides his own priorities and his own course before and after treatment, and as such there are certain issues that are handled differently. From everything I have learned, in my particular case, should the PSA begin surfacing out of the safe zone, the most utilized course of further treatment is hormone therapy. I am a worrier and have not gotten use to just doing PSAs without worrying even after a surgical procedure deemed very successful. Thus I put off going through the anxiety of the May PSA so that I could enjoy my summer vacation(s). This may not seem wise to some men, but as I said earlier, we make our own choices. Of course motivation for continued monitoring is to contribute to the data and help other in addition to breathing a sigh of relief that everything is still fine.
The ED part continues to get better and better. I had not problem urine drip. I do continue to experience soreness in the incision area, especially cold or damp days or after a lot of exercise.
My advice to other would depend upon the pre-treatment biopsy, Gleason and PSA and of course overall clinical condition and age. However, for anyone who can, that had anything close to my numbers, surgery appears to be the way to go. You don't have to expect future urination problems, rectal or ED problems as some may with seed implantation.
Just one quick word about our site. I've recommended it to at least a dozen local guys with prostate cancer whom I speak to locally. The site was a lifesaver to me plus I got to know some very nice and knowledgeable people via e-mail.
All the best,
Well I haven't gone back for my annual PSA as of yet. I am a year overdue. The last PSA was the .001, undetectable and that was a couple of years out.
I am happy with my surgery and very grateful to YANA for helping pull me through. I know it is odd, and maybe even foolish, but rather than go through the anxiety of awaiting a PSA result, I just kind of put it on hold. All my of my post surgery pathology points to a positive prognosis. There was no invasion of the seminal vessels, no positive surgical margins, the PSA post surgery was a 7 3+4, as opposed to a 6 pre-surgery.
I have not had any urinary problems, no leakage at all. Sex life is coming along. In some respects it even better, in that, I have no more cancer worries.
My post surgery PSA were done in Allentown, Pa at my regular Urologist's office. I'm planning on going back to Hopkins for my next PSA in hopes that I receive a more timely report. I scan the site and look for any way at all that I can help.
I recently referred a guy on the site to the Hopkins surgeon that I used. This guy is now a couple months out from surgery and doing just fine. I also have a brother-in-law who had had the seeds implanted four years ago, but unfortunately he has now been diagnosed with small cell prostate cancer. A few months back, Terry was kind enough to refer me to some data on small cell.
I believe that the most important point for men who are recently diagnosed with prostate cancer is to understand that it is not usually immediately fatal (small cell aside). We've got a window of opportunity to make a decision and a number of procedures that have proven success. Thankfully most of us can look back at prostate cancer as just a small setback that was dealt with and put away. Thanks for the opportunity to share my thought and opinions. Please do not hesitate to call upon me for assistance in the future.
JOE'S QUESTIONS: Here are my comments in answer to Joe's questions:
1. The color Doppler scan does not distinguish between aggressive and non-aggresive versions of the disease. What the scan can do, in the hands of an experienced operator is to identify areas that seem more likely to be diseased than other areas - thus the biopsy can be guided more accurately - see Dave Martinez story. The main measure of aggressiveness is the Gleason Grading although a ploidy analysis can provide additional information - see Donna Pogliano's Primer (page down). Since scoring and analysis is subjective, it is suggested that all biopsy material is reviewed by an expert in the field.
2. There is no simple (or accurate) answer to the question of survival because there are so many variables and so few studies. With a diagnosis like Joe's (assuming the Gleason Score of 6 is verified by an expert), most modern studies would show a disease specific mortality rate of about 5% at fifteen years and slightly less at ten years. One study suggests that the prostate cancer mortality of untreated, non-screen-detected, contemporary Gleason 6 cancer may be as low as 10% at 20 years. There is, it appears very little difference been early treatment and late treatment in cases like these. A review of the paper on Active Surveillance provides some data of interest.
3. There are no studies that definitively demonstrate a superior prognosis for any of the current treatment options with a diagnosis like Joe's - see Effective Health Care Report.
4. There are several studies that demonstrate differing levels of variance in pre- and post- surgery Gleason Scores. One such study showed that for the individual scores 38.2% of tumours were undergraded, 32.6% overgraded and only 29.2% had identical grading in preoperative biopsies and final specimens. Other studies show different results, but broadly speaking about the same percentage are overgraded as are undergraded - and of course some are found to be not malignant at all - see Dave Martinez story.
One thing that we all have to face is that there is no certainty in this disease - the diagnosis, choice of treatment and outcome are all uncertain - but then so is life itself [back].
Haven't had a PSA in over two(2) years. Simply because I don't want to deal with that PSA anxiety anymore. I had the conventional surgery at Hopkins and except for the ED feel fine. YANA has been an excellent resource for me and I have recommended it to many other men. Via YANA I have corresponded with other men who had been recently diagnosed and went on to their selected modes of treatment and have reported to be doing well in that the treatment results are what was expected.
I don't have a recent PSA reading to illustrate on-line as after 2010 when it was 0.1 I stopped going to the urologist. I had stated in an earlier update that I did not want to deal with the PSA anxiety and so I never went back. I don't recommend this approach, but it is just the way I feel about things right now. Probably this coming July I will go to Hopkins for my PSA. Everything has been fine with me and I have no reservations about the treatment I selected, conventional surgery. The three (3) PSA tests that I have had where right where they should be and I don't want to revolve my daily life around PSA numbers.
I have lost a brother-in-law to prostate cancer. This was a 57 year old guy who had the seeds implanted a year after I had my surgery. Unfortunately, after two (2) years they discovered small cell prostate cancer that was already advanced to the colon and liver. I have spoken to many guys locally about the modes of treatment and always leaned toward surgery or watchful waiting. My hat off and a heartfelt thank you to the e-mail friends I've made at YANA. As I said in my previous update, I often recommend the site to local guys my age that are dealing with prostate issues. I found it very, very helpful to take a look at modes of treatment and how men did following that specific treatment and for how many years they have been cancer free. It is a wonderful site showing PSA and Gleason data along with age. If there is anyone out there that needs some help, please feel free to call.
Everything seems to be going fine. Just a slight bit of urine leakage on very cold days. A little bit of help from the little blue pill for sex. At 67, I am feeling fine and would recommend Hopkins and the surgery to most guys. A few years ago I kind of changed my diet, that is, I don't eat much meat maybe once every week. Mostly I've stuck to fish and vegetables. Walking twice per week and riding my horse(s) when weather permits is my exercise along with hauling hay and feed and driving a front end loader. Set to go for another PSA soon and will post results. Thanks for all the support I received from YANA.
I'd like to report that (thank God) after about 9 years everything is going well with me. The after effects of the conventional surgery have not really been bad, i.e. a good trade off rather than prostate cancer. I chose the conventional surgery because a close friend had had it about five (5) prior to my diagnosis. I looked at the YANA data and saw that the conventional surgery seemed the more secure way to go. As far as I know I'm fine. I review data on YANA regularly and the conventional surgery still seems to me to be the safest way to go. Get a proven surgeon. God bless.
I went with the conventional surgery at Johns Hopkins. After looking at the data on YANA and consulting some urologists, it seemed that other men with similar pre-surgical number as mine were doing well without recurrence 10 and even 15 years after the conventional surgery. I haven't had a PSA lately. I don't even think about it. If I can be of any help, please contact me. God Bless.
Thank God things are still going well. I confess that I haven't had a follow up PSA in sometime. I feel fine, gained a bit of weight with the exception of more urgency to urinate nothing more has changed. Starting with a new doctor in 2018 and will begin following up on PSAs at that time. The urologist I used passed a couple of years ago. When I was diagnosed, I looked at all the modes of treatment available and chose the conventional surgery. My decision was heavily based on data I reviewed from this site and the advice of two primary care internists. At that time there were a good number of men with my same PSA and Gleason Score that had had the conventional many years before and were still doing well. Again at the time robotic surgery could leave positive surgical margins and there is no pathology with the seeds or radiation. Had the surgery at Hopkins and although it was years ago, from what I've read they are one of, if not the best of guys in our situation. Thanks for the opportunity to do this update and I sincerely hope it helps other men.
Joe's e-mail address is: eckerjoe12 AT yahoo.com (replace "AT" with "@")