This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
Decisions after a Pathology report with Positive Surgical Margins
After my recent surgery, my pathology report said there were multiple positive margins, perineural invasion, but with no seminal vesicle or lymph node invasion. My cancer was upgraded from 3+3 to 4+3 and 50% involvement. From my reading , I noted the upgrade happens in approximately 35% of surgeries. While I am happy that neither the seminal vesicle nor the lymph nodes were involved, the positive margins and EPE news was not what I wanted to hear. As I understand from my surgeons comments and online articles such as the Nine Decisions Before Electing RADIATION THERAPY After Radical Prostatectomy , specifically figure 4 , shows a probability of biochemical recurrence at approximately 50%at 10 years. When I used the Han Tables at the Johns Hopkins site, it said 69% chance at 10 years or 46% at 5 years..
My questions include:
1. Is there any advantage to getting a second opinion from Johns Hopkins on my pathology slides? My understanding is that interpreting the cancer grade is somewhat subjective, so I assume a slightly different grade or pathological stage could influence the survival probability and therefore my choice of follow-up treatment.
2. Can anyone offer their personal experience if they were in the same position, whether radiation was suggested immediately or after the first post-surgery PSA reading, or sometime thereafter when the PSA reached the allowable upper limit?
3. Is the likely radiation regimen the 5 times a week/10 weeks type of EBRT or something else?
I have been reading any study abstracts which correspond to my situation, mostly out of Johns Hopkins Brady Institute such as Prostate cancer-specific survival following salvage radiotherapy vs observation in men with biochemical recurrence after radical prostatectomy.- Trock BJ, et al and .Impact of surgical margin status on prostate-cancer-specific mortality.- Heather J Chalfin, et al. If anyone has any recent specific articles to suggest, please feel free to suggest them.
I cannot say enough thanks how the YANA site remains my best resource for links to information. My personal thanks to Terry and all others who offer their assistance and experiences. I will continue to post my updates and hope that it helps others.
Re: Decisions after a Pathology report with Positive Surgical Margins
Thanks for the kind words, Mike. Before I try to answer your specific questions, I’d like to just make one point. It seems that you may be (possibly subconsciously) confusing mortality or survival rates with biochemical failure and using them interchangeably. But they are VERY different kettles of fish. “Biochemical failure” refers to the detection of PSA at a level with which a doctor may be uncomfortable. There is absolutely no agreement as to what this level is – one study identified more than 200 definitions of ‘failure’. But, even more importantly, there is no direct relationship between biochemical failure and death. Certainly some – a very small proportion usually – may pass on after the failure of their primary treatment, but the majority will not. Here are my best answers and comments.
1. As I understand from my surgeons comments and online articles ……there is a probability of biochemical recurrence at approximately 50% at 10 years. When I used the Han Tables at the Johns Hopkins site, it said 69% chance at 10 years or 46% at 5 years. I’m always a bit wary about writing about probability because I never studied statistics and for that reason I found it so useful to read THE MEDIAN ISN’T THE MESSAGE . From that I learned that scientific studies refer to a median in data collected from specific sources but what is more important is the RANGE of the data. In other words if the median rate of biochemical recurrence is 50% at 10 years then half the men had biochemical failure by 10 years, but half did not. So it becomes pretty important to establish if there are any pointers as to the different survival periods. If you’re as much as an optimist as me, you’d look for pointers as to why you’d be to the right of the median i.e. in the long term look. Pessimists tend to look for association with the men to the left.
There are specific additional problems with studies, especially in considering when the data was collected and collated. This is particularly important as far as Gleason Grading is concerned because of the observed phenomenon dubbed GLEASON MIGRATION . Essentially this means that the Gleason Score ascribed to tumours has crept up over the past ten or twelve years culminating in the redefinition of prostate cancer as defined by biopsy samples. So, for example a GS 7a in a current diagnosis may well have been a GS 6 or even lower when data was collected in an old study. So applying your currently graded pathology result to an old study will have a tendency to overestimate the aggressiveness of the tumour, as defined by the Gleason Score. Does that make sense? It is fairly complex!
2. Is there any advantage to getting a second opinion from Johns Hopkins on my pathology slides? My understanding is that interpreting the cancer grade is somewhat subjective, so I assume a slightly different grade or pathological stage could influence the survival probability and therefore my choice of follow-up treatment. You are quite correct when you say that about one third of tumours are upgraded after surgery (and about one third are downgraded). This is because the grading is a subjective process. But the majority of discrepancies occur because of the very small samples in biopsy. There is not the same error in the histology after surgery when the entire gland can be examined.
3. Can anyone offer their personal experience if they were in the same position, whether radiation was suggested immediately or after the first post-surgery PSA reading, or sometime thereafter when the PSA reached the allowable upper limit? I don’t have a personal experience but can say, after reading thousands of stories from the men who have shared their experiences that there are men who chose to have radiation therapy immediately there was what was termed as biochemical failure by their doctor; there are others who waited to see if there was a sequence of rising PSA numbers, waiting until they PSA level was at the limit chosen by their doctor. If you filter the Experience stories, you should be able to identify relevant stories.
4. Is the likely radiation regimen the 5 times a week/10 weeks type of EBRT or something else? Yes, that is the most likely type of radiation that will be suggested, possibly with ADT (Androgen Deprivation Therapy) as an adjuvant therapy.I don't know if you have come across the HEALING WELL FORUM . You might join that or read through the posts there. i suggest that Forum because there are many men who chose surgery and many of them who chose what they term on that site as SRT (Salvage Radiaiton Therapy) after biochemcial failure.
Re: Decisions after a Pathology report with Positive Surgical Margins
Hi Terry, I agree the terms are different. I have to tighten my filter a bit as I read through the abstracts, some of which use both terms.
I read both the links you provided. It is a good reminder to look at the range and which terms they use (mean or median).
I am making my way through the Healing Well Forum and find it very useful as many posters summarize their statistics and it is easier to relate their situation to my own stats.
Thanks again for the helpful pointers. Best regards. Mike
Re: Decisions after a Pathology report with Positive Surgical Margins
Mike,
I went through the same thing.
1. Probably no advantage to getting a second opinion if you are going to wait until your PSA starts going up.
2. I was told to get radiation starting about 3 months after my prostatectomy but I opted to wait until my PSA hit 0.2 which took about 10 months. The experts don't know as to when is the best time to get the salvage treatment but don't let your PSA get above 0.2. I waited, hoping it wouldn't go up because my PSA went below 0.02 after the operation. My first "very old" radiation oncologist told me flat out at the begining that it would go up based on my prostatectomy results. I switched to a different radiation oncologist. Sometime you just aren't ready to hear the truth.
3. You will be getting salvage radiation treatment so it is a bit less than if it is primary treatment. It will be 33 sessions, 2 Greys per session, for 5 weeks and 3 days and ADT will be recommended. I actually found the radiation treatment to be very pleasant, almost like going to a spa! So far no ill effects from the radiation (3 years now) for me but your results may be different.
Re: Decisions after a Pathology report with Positive Surgical Margins
Mike,
Your situation is very much like mine was, back in 2007. I was also a 4+3 gleason, both before and after surgery. I had only a single, very small positive margin. And no invasion of seminal vesicles or lymph nodes.
My surgeon, in line with the general policy at the hospital, suggested that I enter radiation surgery 3 months after the prostatectomy. In the mean time I would get two PSA readings and could consult others. But he said to not start radiation until I had good urinary function once again.
My subsequent PSA tests were reading 0.1. I started radiation on schedule and had 30 sessions at 2 gray each. Five days a week. Hormone treatments during the radiation period were an option, but not specifically recommended. I opted not to get any hormone treatment, being very active and not wanting those side effects. The radiation went smoothly with only minor problems.
Now it is 5 years and some months thereafter and I have no regrets and no detectable PSA on my followup tests. I couldn't be happier, and I view this as a problem of the past. Yet of course I know that there is some chance of a recurrence, and I have been on a very healthy diet ever since. I view that as a small price to pay.
Re: Decisions after a Pathology report with Positive Surgical Margins
Hi Mike,
I also had same Gleason score (1 hospital said 3+4 and another 4+3) and 3 positive margins and perineural invasion. My surgeon said to follow PSA progression before opting for radiation. The doctors at Dana Farber recommended radiation. D-F doctors showed me a very current study that said that radiation should be given before PSA goes above 2.0. I was operated on Dec 2009 and I am waiting until PSA goes above .02 to go for radiation
and HRT therapy. You can read my story on this website.
Doug
I met with my radiation oncologist (who is also a urologist) yesterday and he made his recommendation and answered all my questions. We talked for about an hour. The following are his answers which related to questions I posed here:
1. He did not see any advantage or need in seeking a second opinion on the pathology report. He said when the entire prostate is reviewed, it is not normally subject to the same level of possible misinterpretation as the more limited biopsy samples.
2. His recommendation is for me to start radiation after I have regained full urinary control and he said that is normally around a three month period or so. He said waiting until you have full urinary control is very important. He said that an alternative is to wait for detectable PSA or PSA rise, but that in my case, he did not recommend that. He said one of the adverse elements he was concerned about in my pathology was that the cancer cells were non-focal and he put my risk of recurrence somewhat higher than the 69% the Johns Hopkins post-surgery table suggested- more like 80-85% within 10 years.
3. The treatment discussed was IMRT using the Elekta Axesse system. Seven weeks, five days per week and 25 minutes each session, 70 grey. He also discussed the possible side effects and suggested the risks are in the single digit % range. He asked me to keep the idea of ADT/hormonal treatment open as we might need to discuss it further after I have my first PSA test next month.
He also mentioned the same studies and models I had used: Sloan Kettering Nomograms, as well as the SWOG, EORTC (http://www.eortc.org/news/), and German studies all referenced in the NCCN Guidelines which I used as my basis for guidance.
This treatment center is in the suburban Washington DC area and is integrated with Johns Hopkins. It is also 10 miles from my home.
Mike,
Everything you heard here sounds exactly in line with what I had heard at a similar point in time in 2007. And I had been following the very same studies carefully at that time, though they had just come out. SWOG 8794 and EORTC 22911.
One little statistical note for you to keep in mind: Further analysis of the SWOG study divided the patients into those of PSA 0.2 and below versus those of a higher PSA post surgery. And showed much better long term outcomes for those in the former group. However, keep in mind that the groupings cover a wide range of patients, and just because you fit in one group or the other does not indicate that your specific outcome probabilities match that of the full group.
Specifically, allowing an undetectable PSA to progress to a 0.1 or 0.2 may be detrimental to your true outcome probabilities even though you remain in the same statistical group within the study sample. But in both groups the better long term results came to those getting timely adjuvant radiation.
Furthermore, I don't think the percentages given for "risks" of side effects from the radiation are to be taken very literally. Those side effect statistics will surely be based on followup questionaires which ask patients about the severity of the side effects they encountered. And different patients will subjectively assign different weights, for many reasons.
You're sure on the right track, and I wish you well.
In mid-December I had my first PSA test following my surgery of Oct 29. The ultra-sensitive test result was 0.015 which the surgeon termed undetectable. I will now meet with my RO in mid-January for an updated discussion.
I am trying to maintain a balanced perspective on the result. The RO said he would not be surprised if my first PSA Test was detectable. So, I regard it as good news, but would regard it as yet another path of continual observation. I would imagine this may mean that I can avoid ADT for now and possibly delay Radiation Treatment for a bit. I will see what the RO says.
I welcome any opinions or suggestions on latest relevant writings to read. I did a search on "undetectable" and am reading through the the resulting posts that it produced.
I have now started my radiation treatments. I completed #6 of 38 today. So far, so good.
Prior to treatment, I had a second ultra-sensitive PSA test 3 months after surgery and it was undetectable.(as was the first) For this reason my RO did not feel that ADT was necessary. He said the 5 physicians in his group had different views on when to utilize ADT. I am ok to start radiation but I prefer to not start ADT unless I can be shown a strong reason to do so. So just radiation for now.
I had my mapping completed and lower extremity cast made to hold me in place. It is a smooth process - about 30 minute drive to get there, a few minutes to change, and about 10 minute treatment, and I am on my way home again. I meet weekly with the nurse and doctor to check on side effects. I have consistently followed their advice to have my bladder comfortably full prior to treatment. They also want me to continue to exercise and eat well. In fact, my treatment includes the services of a nutritionist if I need it. It seems like they use diet changes address some of the possible side effects and it seems similar to using diet to Overactive Bladder Syndrome (avoid citrus, tea, and other foods which can irritate the bladder.)
I went through salvage radiation 6 months ago. For me it was smooth sailing through out the process. I was very active although I did take a short nap almost every afternoon. I drove one hour each way so my fatigue my be to my early morning drive. I hope your radiation treatment works out as well as mine did. One difference with me is I had 6 months of ADT. I am still dealing with some of those side effects. I go next week for a PSA and I hope it is undetectable. I do not want to be on ADT for an extended period of time. Why did you get salvage radiation if your PSA was undetectable?
Both my surgeon and RO were very surprised and concerned that what was thought to be low grade/low involvement, contained cancer turned out to be a higher grade, 50% involved, with multiple positive margins and ECE/bladder neck. The non-focal aspect was also a concern. I am only 57 and with how many cancer had changed rather quickly , my RO felt the risk of recurrence was at the higher end of range of what the tables indicated (at values noted in the first part of the thread). We discussed the option of waiting until the PSA is detectable versus doing the RT while the cells are likely still in the prostate bed. As I read through what happened to most patients in similar circumstances, it seemed many went to RT/ADT combo following PSA rise at about the 2 year mark. So I opted for the more aggressive "do it now" decision. I think BillG stated it well in his reply when he termed it timely adjuvant rather than salvage.
Some related posting info from the www.HealingWell.com which Terry so kindly referred me to:
Several studies recently have found a big advantage to adjuvant radiation (now) over salvage radiation (waiting for PSA to rise). Several studies have showed significant improvement in PSA progression-free survival with adjuvant radiation:
http://meetinglibrary.asco.org/content/107383-134
http://www.ncbi.nlm.nih.gov/pubmed/23084481
http://jurology.com/article/S0022-5347(08)03059-0/abstract
It also seems to be important to get enough radiation: 70 Gy seems to work significantly better than 60 Gy:
http://www.ncbi.nlm.nih.gov/pubmed/22795730
