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Posted 12/18/2018 6:18 AM (GMT 0)
Hi All
Have recently been diagnosed with gleason 6 1/12 core at 5%(see Below). Have opted for active surveillance at Penn Medicine. Have a follow up appointment with the Uro next week to discuss program. Would like to see comments on what should be done, what to watch out for and questions to ask. I have been following this forum for some time and a point that concerns me a bit seen plenty of people with stats similar to mine but have opted for treatment.
would like to understand the reasoning or situations better to make sure I am going with the right decision(of coarse can go with treatment at any time so sane starting point)
First My Logic
The big item in my mind is that from what I have read a lot of men my age have low grade cancers but never know about it cause had no cause to look for it. A common number is see is in the range of 30 to 50% and this increase substantially when you reach the mid 70"s. Nothing would make me madder than if I were treated and dealing with the SE for some thing that is unlikely to harm me.

Gleason 6 tumors are believed to progress very slowly and rarely if at all metastasize(most important). The big issue here is whether sampling accurately reflects what I have with the issues regarding random 12 core biopsy. Doing MRI does compensate for this deficiency. Anything else out there and what are its limitations.

My PSA numbers appear to be flat at around 3.5 and the original which prompted the biopsy seems to be an outlier at 4.3 although number of data points is limited. The MRI indicated BPH with prostate volume of 49 which give a psa density of 0.07 to 0.09 depending on what number you use which seems reasonable.

DRE by first URO found nodule but second URO found slight induration and termed it non specific. This is a discrepancy since a nodule should be something distinct. So this is something that I would like to reconcile but these findings are subjective and I would consider lack of consistency a potentially positive thing. Abnormalities if present are not dramatic but subtle.-comments here

An oncotype DX test done indicates low risk(see below) but it is just a confirmation of gleason 6 grading and does not add much-more important to know if something else is lurking around that is not sampled. by the way they did not know about the MRI would information from MRI influence assessment

So my feeling at a minimum need to sit tight and monitor for 2 to 3 years before I consider doing anything unless something new pops up. In addition I have to become confident that the people at Penn Medicine are the right folks to do the job. My first URO(the one who did the biopsy was a nightmare)

So any comments on my reasoning and more importantly if you had low risk stats what choice did you make and why-especially if you had a problem with active surveillance
Any comments on MRI limits and advantages as well as youre personal experience with it. Any other scanning or testing technologies out there.

Would nice to hear a diverse set of comment-probably useful for anyone considering active surveillance

thanks much
Posted 12/18/2018 8:31 AM (GMT 0)
Everyone is different. I had a cognitive biopsy showing low amount of gleason 6. The previous MRI reporting a more extensive PIRADS 5 lesion. After much thinking and reasoning I opted by surgery. The path report gave results much closer to the MRI findings. Therefore, I would say your PIRADS2 and the genetic test give you good reasons and confidence to stay with AS. For me, surgery was not such as big deal after I overcame 2 months of dribbling, except that my previous mild ED is almost total now.
Posted 12/18/2018 8:58 AM (GMT 0)
Thanks jmadrid
youre situation demonstrates what I am talking about regarding something else lurking out there. If I got a Pirads 5 MRI I would have wanted a biopsy of the lesion the MRI showed and would have ended up with surgery or radiation most likely surgery. Also you had a steadily increasing psa in 2017. Not sure if I would have thought much about getting treated. Just which treatment. Hope if I need it I can recover as quickly as you. For me the leaking is a bigger deal than the ED. I can get creative I think.
Hope you are doing well and have a good holiday
Posted 12/18/2018 10:59 AM (GMT 0)
Thank you for your best wishes, I hope you will have happy holydays and I wish you the best as well.
After the biopsy I had some hope I could stay in AS but my urologist (not the one that finally performed the surgery) convinced me that I needed treatment. He was particularly alarmed by the finding of positive cores in different sides. I was more alarmed by the MRI results so that it was easy to push me to do something. I visited a couple of radiologists but, with a sized prostate, I though radiation could be more problematic (they advised me adjuvant treatment to reduce the prostate during the treatment) and I opted by surgery.
After a positive biopsy or even after an abnormal PSA result we are tied to frequent PSA tests for life. The only thing up to us is to stay knowledged and alert as it is clear you are. It is also important to try to escape from anxiety as much as we can.
Posted 12/18/2018 11:25 AM (GMT 0)
Mufjem, I think your approach is sound and that you have made a logical decision. We do have men here who have been treated with their low risk cancers but we also have men who have chosen AS and are doing quite well. Hopefully some of them will respond to this thread. One thing you might also consider is a second opinion on your biopsy slides from Dr. Epstein at JHU. That should give you some more confidence in your decision if he confirms the reading. As an expert pathologist in this field he has found that a number of diagnosed prostate cancers are not cancer at all. Anyway, I would suggest that added step in addition to the excellent work you have already done.

Jim
Posted 12/18/2018 12:06 PM (GMT 0)
The whole point of AS is to actively monitor things--with regular PSA blood draws, MRI's, follow up biopsies, etc--and IF something pops, THEN you make an aggressive treatment decision. AS is not "sitting tight", not exactly.

I think, in your case, this is a great plan. You're low risk...and the other tests confirm it. The two doctors disagreeing about what to call what they found on the DRE is just that...a disagreement. It's ok, and it's a minor thing. The other scans you've had are much more important.

The best thing about AS is that there are now long term studies out that show AS, done properly (and it sounds like you're in a 'done right' program), poses NO increased risk for long term survival. The roughly 50% of patients on AS who eventually do treat, have no statistically different outcomes from those who treat immediately--they just put off the potential side effects for a while.
Posted 12/18/2018 12:09 PM (GMT 0)
Mufjem, I am proud of you. You are taking AS very seriously and doing all the follow up testing that is necessary for AS. Your results to me look like you are doing what you need to do. Your PSA, Gleason, MRI and Oncotype DX all indicate very low risk. Best Wishes!

69 yrs., 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.
Posted 12/18/2018 2:12 PM (GMT 0)
mufjen:

I'm on AS. My situation is a bit different in that my Gleason scores and MRIs are all very low risk. However, I have a continually rising PSA, so I do have one risk factor to keep an eye on. I'm comfortable with AS because:
1. While you may fear something was missed initially, over the years you'll have more MRIs and more biopsies, so if something was missed it will turn up sooner or later, and many studies show that the survival rates are the same.
2. Even if I eventually need treatment, I consider each year without treatment a victory. We never know how many years we have left (I hope at lot at age 63!), but I think it's important to maximize the quality of each year. So as long as my doctors are confident AS is safe, I'll stick with it.
3. While I've got a good doc at an academic medical center, I go once a year to the other academic medical center in town and get a second opinion on whether AS is safe for me. That also adds to my confidence. it's a pain to set up the appointment and get the medical records transferred, but I really feel better after a second highly qualified doc says AS is perfectly safe for me.
Posted 12/19/2018 2:25 AM (GMT 0)
mufjem - Not sure if I understand your sampling, did you have a MRI guided TRUS biopsy or was the MRI and 12 core sampling not linked together?

I had the MRI guided biopsy (14 cores, 3 directed to specific areas) with a PSA of 5.1 and the DRE noted something. I failed misereably and ended up in surgery six weeks ago since waiting was not an option.

AS is great provided that something is not missed. Seems like you are doing all the right things, just wanted to verify the sampling process.
Posted 12/19/2018 4:19 AM (GMT 0)
The four medical associations (AUA, ASTRO, SUI, and ASCO) that issue guidelines for the treatment of prostate cancer, recently published new recommendations that specify active surveillance as the default treatment for your pathology.

I have been in a formal AS program for about ten years. The acceptance of AS during that time has been skyrocketing.

My impression of the low risk men who opted for treatment is (1) they didn't comprehend that PCa is not pancreatic or brain cancer (2) they were psychologically unable to deal with the thought of having cancer in their body (3) they only consulted with one urologist, who steered them into surgery.

You are on the right track. Good luck to you.
Posted 12/19/2018 4:58 AM (GMT 0)
I went into the meetings with my doctors hoping to do AS, but at the time G7 and two brothers with PC put me out of their protocol for AS. Instead I went for RT, which worked.

When I suggested to some family members that I was hoping to avoid treatment they were horrified and I got example after example thrown at me of family members, and friends who died from cancer. It's tough to fight against that kind psychological pressure from those closest to you. Sometimes it's the spouse/child/parent who puts pressure on low risk folks.

Andrew
Posted 12/19/2018 6:18 AM (GMT 0)
I’m a G6 and in AS with my community practice urologist. My last two biopsies both showed low volume G6. Two cores in the older biopsy and only one core in the most recent biopsy. Both were MRI fusion biopsies. Interestingly, the PIRADS 3 (or 4) area of interest that was sampled heavily by both biopsies did not produce any positive cores. The G6 cores were located elsewhere and not flagged by the MRI scans. My understanding is that MRI does not necessarily catch G6 lesions, particularly small volume G6 leasions. So while MRI is certainly helpful to the diagnostic and monitoring process, it is not infallible. Having said that, you seem to be on the right track. AS protocols typically call for a confirmatory biopsy a year or so after the initial diagnostic biopsy. It should be an MRI fusion biopsy. The outcome of that next biopsy will inform your AS participation and any future monitoring regime. Given that my confirmatory biopsy essentially showed no change from my prior diagnostic biopsy, my urologist isn’t planning any more biopsies for the next couple years barring a change in my PSA numbers or annual imaging. Just had my annual MRI and am waiting on the results. Any day that doesn’t require treatment is a good day.
Posted 12/19/2018 1:52 PM (GMT 0)
Sounds like you have the info you need. My only advice is follow the AS protocol which includes keeping an eye on your PSA. It took a while to find my cancer (over 60 samples) only to find 2% of one sample with a 6. AS lasted 14 month for me because my PSA kept going up. Turns out I had a 3+4. What I have read is that AS is very safe if you follow the protocol and get continued monitoring. Good luck to you.
Posted 12/20/2018 5:13 AM (GMT 0)
I want to thank every one for youre comment-greatly appreciated especially since most of you are dealing with far worse situations. Makes feel a bit like a whining baby but until now have not had any healthcare at all to deal with and no PSA history. Not that I ignored things but was not proactive but mostly reactive even though except for a weight issue until 10 years ago live a relatively healthy and active lifestyle. So for me it is a sea change. This compounded by having problem with my first URO. This site has bee great for giving me perspective for my current situation and having a feel about what I my have to deal with in the future if things go south.
THANKS THANKS THANKS

Tudpok18-Have not had a second opinion yet having a problem with the folk at my first URO's office. giving me a runaround. This is part of my original problem. It took me over 3 months to get the oncotype DX test report from them. Then I had to pay for an appointment and got no explanation about what is in the report. Will be talking to mynew URO at my next Appt about this. To me this is really important since this seems to be the only thing pointing to a problem so need to be sure about this result. Another biopsy does not help cause we know how often they miss especially something small and MRI is not likely to see something like this.As A matter of fact one of the RN in new URO office commented by their protocol I probably would not have had a biopsy but treated for BPH and monitored PSA more. by the way updated profile with some more PSA results.

Mumbo-The Biopsy was the standard 12 core trus biopsy. The MRI was done about 3 months after the biopsy. The URO who di the biopsy does not believe in doing MRI. Thinks it is useless

In The Shop-I know what you are talking about with family members. I have a brother who is pushing me to cut it out. Thinks I am being incredibly stupid, but then it is not his body and life. He isa Mr EXPERT. What worse he is pushing on my wife to get me to change my mind which is freaking her out. She is upset enough about this situation cause she has lost 5 sibling the last several years so by itself has her on edge. Me after a kind of What the F/Why me period decided to deal with it and move on. Then I found this site.


One additional comment-The Uro I am going to now originally recommended surgery and was deat against RT, but admitted his bias that he is a surgeon(he does not do surgery anymore). He referred me to a surgeon in his group who was point blank in saying that AS is the first choice. Even to the point that did not want really to discuss surgery till later and that he felt it would be irresponsible for him to recommend surgery at this time. Will talk about it if I really want but need to watch this thing first and get all test results in. Well nothing has come up to change opinions since. Also was referred to an RO in the group but did not see him cause first a decision has to be made if treatment is needed which for now is NO. If and when treatment is needed will investigate than cause technology always changes for the better with time. Another advantage of AS as I see it.

Again thanks much to ALL and hope you all have a good holiday
Thanks for tolerating my rambling
Posted 12/20/2018 10:47 AM (GMT 0)
Glad to hear you're sorting it out. I don't know if it will help (might not), but you could ask your pro-AS uro for some literature about the AS protocols--the whys, reasons, values, etc. and give them to Mr. Expert and your wife. Maybe if he sees the actual data and research in print it will make a difference. (Doubtful, but it's worth a try)
Posted 12/20/2018 3:49 PM (GMT 0)
Hi. Sounds good to me. Was watchin my PSA for 11 years. Using mri as well is smart. Be careful if PSA doubles along the way. For first 10 years I checked PSA bout 3 x per year. Gradually rose to 9-10. That seemed ok.
Then insurance changed n I got involve caring for my parents over 90 and only check 1 x in2016 but it went down to 8.5.
Checked again in aug 2017 n it was 16. Not good! I didn’t want a biopsy cause I thought it could allow disease to spread. Based on my exposition 2 freinds both long gone. I heard I could get mri and planned to do it wen hurricane was predicted to devastate Florida so I drove my parents up to bronx ny my home.
Didn’t check PSA till dec n it was 28. Got biopsy in January n mri n bone scan. Can’t get into it all but finally accepted hormone therapy wit Lupron. It has done its job and disease has shrunk but still possible evidence of tumor n in bladder neck n right seminal vessels.
I have been in great health all along. Hot flashes suck. Watch carefully n pray to be guided to latest cuttin edge imfo on promoting health. Ie: dr Zach bush. On utube.
It’s all about maintaining peace n promoting health. Fighting disease never results in real healing n health. U can fight the darkness forever but if u turn on the Light there is nothing to fight. The 2 can not co exist.
I’m starting to pray for drs to awake and demand training in health n nutrition. They are trained more than 99 % about disease.
That’s WAY out of BALANCE. God have mercy on us and help us take back the soil from big bussiness n chemicals and heal it. Think bout it. If the soil is sterile how can we live without disease. I just taped in dr Zach bush. He gets to the root of ALL disease which are exploding exponentially. Time is short. Glad I discovered this group. I haven’t been commuting any support group so far. Blessings to ALL my brothers out there🕊
Posted 12/22/2018 8:49 PM (GMT 0)

Mumbo - The Biopsy was the standard 12 core trus biopsy. The MRI was done about 3 months after the biopsy. The URO who did the biopsy does not believe in doing MRI. Thinks it is useless. said...

Mufjem - That is a bit troubling, it is my understanding that doing the MRI before doing any invasive testing (assuming local radiologists have access to the correct MRI equipment, etc) is the current state of the practice for the less than obvious situations like yours (covered by insurance, mine was). Your PSA's should not be troubling by themselves for a 67 year old, especially since the second was lower. Feeling a bump or ridge adds to the complexity though. The MRI can provide additional information to the urologist regarding whether a biopsy should be done or not at this time (they are not close to being risk free). Your MRI result of PIRADS 2 is pretty low and may have caused the urologist to wait and do more PSA testing and maybe another MRI at a later time rather than the biopsy right away. Also, with the MRI results, the urologist can aim for the area of concern and insure a good sample is obtained there. Just my thoughts.

Posted 12/25/2018 5:59 PM (GMT 0)
Mumbo
not sure what the last post meant

I agree the the first URO opinion was disturbing-thats why I am no longer with him
The situation is more complicated than just that bottom line I have a fundemental distrust of him
So now I am eith Penn medicine and although these guys are much better the jury is still out if they are the right one for me-it will just take time.
The MRI is the most critical component of testing which gives me an idea if there is anything more serious going on
Still got to get second opinion on biopsy-getting a runaround bout that.

Thanks much for youre comments-greatly valued
happy holidays
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