CONSULT done-- summery below--All PSA tests now listed--Comments welcome--Anxiety 3 years after RP

Hi, I’m new to this type of forum. It’s hard to put yourself out there with medical issues but here goes!

I am 3 years post surgical. In October 2010 I had a divinci robotic RP. I was a 3+4 after 2 coring sessions. But my PSA only 3.4. It was a quick rise though. 2008 1.7 and 2.4 in 2009 and finally the 3.4 in 2010. Hence the procedure.

The surgeon took the lymph nodes also. The lymph notes were clean and I was informed all was good! I have had the usual problems but certainly much better than the alternative!

My last 3 USPSA tests have me worried however. After 1 year .089. 2 years .059 and last week .137. I have read about the doubling issues etc. My GP, excellent 58 year old UCLA med school grad says he is not worried and to repeat in 6 months. They are sending the results to my surgeon so I hope to hear his thoughts this week.

Anyone else have these issues or any thoughts?

Thanks for listening.

Happy Holiday’s

Scott

Post Edited (themacs) : 12/16/2013 10:17:02 PM (GMT-7)

Hi Scott,

I'm also a bit puzzled by your post-op PSA scores. You said they have been: 0.089. 2 years 0.059 and last week 0.137

Did there happen to be a < sign preceeding those first two numbers? If you actually had a 0.089, that would round up to 0.1, which is NOT considered zero. A reading of < 0.1 is considered zero -- with the "<" meaning "less than."

But the first two readings you listed ARE basically a 0.1, which would indicate a definite presence of PSA. The 0.137, of course, shows that this upward trend is continuing. So, from what I can see, your PSA has never been zero since a year following your surgery.

Maybe some of the others here can double-check my comments and see if I'm missing something.

In any case, it would seem that salvage radiation might be something to think about.

Good luck!!
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.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
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, 9/9/13 PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.

Scott,

You report three PSA readings over three years. So can we assume you've been tested only once per year -- or are there other tests results in between? I (speaking as a patient who has been through this, not a medical professional) would suggest that with a latest reading greater than 0.1, you should request tests at 3 month intervals. If your PSA continues to increase you should consider salvage radiation treatment (SRT) sometime between hitting 0.2 and 0.4. SRT has been shown to have a greater incidence of success when administered at these lower PSA levels (at or below 0.5 or so). On the other hand you don't want to rush into SRT without at least several successive increasing readings greater than 0.1.

In my case at least, PSA didn't increase at a steady rate. There was a period after I first hit 0.1 that I stayed there for nearly 3 years before it began increasing again, though it then increased quickly -- doubling twice to 0.4 in 9 or 10 months. This is why I think you should insist on tests no more than 3 months apart.

If you haven't already done so, I suggest you begin researching SRT along with probably some kind of concurrent hormone therapy, which many Radiation Oncologists use to potentially improve the success of the radiation treatment. I was on Casodex for 3 months during my SRT. Thus far, my results, now three years beyond SRT, are still excellent.

If you haven't already read it I suggest you read the section headed "What Should I Do if My PSA Comes Back After Surgery" in Dr. Patrick Walsh's Guide to Surviving Prostate Cancer - Third Edition (Page 385) and also his section "Adding Hormonal Therapy to Radiation (page 334).

Best wishes, and please keep us posted.
Jim

Rounding to .09, then, .06, then the oddball .14. I think the doc, evan only a GP is prudent with a 6 mos psa. As it will be definitive and a one time shot to know. If it stabilizes at .14 to .15., or better yet , goes down to .06 or lower, this eases the pressure. Cases like these are exactly the reason Memorial Sloan Kettering, went to .4 for official BCR. the 6mos wait will not reduce chance of cure in spite of the studies that say the sooner the better. MSK is one of the most reputable PCA centers in the nation , if not the world. I am sure they follow most studies and have factored that into there decision for the BCR trigger point, as well as plenty of other factors a group of men and women pca specialists like theirs would have access to and we at healing well and others do not. I firmly believe there is more over treatment in secondary treatment than in primary treatment, yet the fuss about over treatment is always on the primary. Odd, especially when there is always the " oh pca is a slow growing cancer, you have time to do this or do that it will not hurt your odds". Yet when there is the slightest hint of recurrence, prompted by this study or that study, " better get this or that treatment, hurry now ,hurry" A bit exacerbation, to be sure, but you get the point. FWIW to you themacs.

Logo, my urologist was only that and not a urological oncologist. Neither was the other urologist we visited for the first opinion. I believe there are many urologists both in the US and in Australia who are only surgeons. One of the basic gripes in books like the "invasion of the prostate snatchers" written by Blum is that people diagnosed with prostate cancer are sent to surgeons (urologists) and not oncologists.

My sister who is an senior physician and a associate professor of medicine at a teaching hospital in NY tells me of widespread lack of knowledge about PSA and prostate cancer in GPs and even internal medicine specialists. She admires the level of knowledge at this site and laments that many of her students and colleagues do not have this knowledge. Therefore, for Scott to build up his own knowledge and questions to ask his doctors is going to be important to him in dealing with his disease.

You could be right - the urologist could also be an oncologist and the GP may be on the ball and have made an astute judgement about the timing of next test based on experience and knowledge of his patient. However Scott needs to be confident that this is the case and I am not sure that he is.

Regards,
An

Scott, Welcome to HW. Sorry you need to be here but it's a great place to ask questions.

The normal for a lot of doctors is to not worry until the post op PSA rises above .2. Sounds like that's what you're doctor is thinking. Waiting six months to reconfirm might be okay. It will be good to hear what your surgeon will say. If the PSA is rising then you're likely going to get a recommendation for follow up radiation or HT treatments.

You might want to think about talking to an Oncologist that specializes in PC. With a rising PSA, it might be prudent.

Andrew

Thanks again to everyone. I forgot to mention, as I didn’t think it was germane to the question, that I had 2 lymphaseals (spelling I’m sure) after the robotic procedure. The one on the right grew quite large (almost a litter in size) and the one on the left remained small. I had the right one drained but it came right back.

One year after the RP it was removed at Cedar’s in Los Angles. It has not reformed. I left dissipated.

I will here from my Surgeon today and will find out his thoughts.

This forum helps with knowledge but it opens your mind to other good and bad possibilities. I do feel educating oneself is best however. Still the anxiety is terrible.

Scott

Hi Scott,

I'd ask his opinion on the frequency of testing going forward; what he thinks would be the indicators for further treatment; what he thinks would be the indicators that any recurrence is local to the prostate bed and vicinity (and thereby potentially responsive to SRT); what other medical professionals he thinks you should consult with now or in the future (e.g., radiation oncologist, medical oncologist, imaging, etc.) and what current or future indicators (PSA and/or other) would suggest it would be appropriate to speak with any of them.

Please bear in mind that, as I said above, I stayed at 0.1 for nearly three years. Your surgeon and your primary care doctor may feel that with, so far a single reading above 0.1 that it is too early for you to begin consulting with other specialists. But this is a good opportunity for you to pick his brain.

Unfortunately treatment can be as much an art as a science and different doctors can and do have well-informed but different opinions and ultimately it comes down to the patient to make the decisions. I'm going to see my R.O. again in January even though it will then be nearly 4 years since my SRT. I want to have an annual chat with him because he has a different personality than my URO as well as a different medical specialty. If I should need further treatment in the future, I'd like to have him in the loop as one of the people I can bounce things off of.

Jim

Hi Scott,

Thanks for posting your PSA scores, your nadir was 0.01 so there has been a significant increase. At this stage though I don't think anyone will be able to definitely say you have a recurrence as there are not enough readings above 0.1 to make this call.

I think there the questions to ask your surgeon would be:
1. Is he a urological oncologist? If not, who would he recommend as a specialist oncologist for prostate issues.
2. What would be his definition of a recurrence as the latest reading of 0.137 is now a detectable?
3. What PSA testing regime would he suggest given the reading above 0.1? Six monthly? Three monthly? Two monthly?

If you are of a mind to put a plan together as to what your next steps may be and what would trigger further treatment it may be good to have a chat about that. If you do want to do that then I would take the opinion of a oncologist into account and if your urologist is an oncologist then all the better.

Scott, there are many ways to deal with a potential recurrence, this is what I would suggest to my husband if he was in your shoes.

Regards,
An

Logo, no apology needed, I think we are on the same page.

Posting all your PSAs was helpful. Your values have jumped from the low of 0.01 to two values above 0.1, which indicates you may need salvage radiation. A consultation with an expert on recurrence will be instructive regarding how to proceed. Let us know your plan after meeting with the doc. Take care and hang in there.

There is only one value above 0.1. The latest reading.

Yes, you caught me napping....there is only one value above 0.1 ng/dL.  I sit corrected.

Walsh states the average time from BCR to metastazation is 8 years. This with out treatment. Your surgeon, is obviously not an oncologist. 'If it is a cancer it will go to the bone',... yes without tx. If localized SRT could kill it , if systemic HT it could keep it in remission for years, then all the goosdstuff that comes after that. Do not judge your chances by statistics on cancer forums, as they naturally attract people that are more outside of the bell curve of good results. the folks in the big portion of the bell curve are out living their lives, not that advanced cancer guys aint. It would be nice if all the folks with good results , the vast majority of those diagnosed , all posted their results , you would feel a lot better. Keep that in mind , when and if you lose heart. You need to talk to urological oncologist and get his opinions , know that you are getting records together. I thought surgeon might refer u to one, if he isn't one, suspect he isn't. If he is a urological surgeon and not an oncologist, they can be fairly out of the loop also, as An38 indicated. I had a local urologist that was a surgeon only and staged me wrong and wanted to do an open surgery a week after biopsy. I was never considering local treatment anyway and subsequently fired him when I returned home from a major med center, and got local follow up, on minor issues. I stopped seeing him. I just see my GP. Im curious, how many nodes were dissected, Clean nodes is a big deal prognosticaly in a positive sense. the only real negative, I see is the last psa , which I actually think could be a fluke. you had a .09, that went down to a .07 and then the possible fluke. I would be awfully tempted to get a retest now just to see where its at.