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Posted 4/21/2013 5:34 PM (GMT 0)
Does anyone know if your PSA is undetectable could bone mets be present.. Painful bone mets that is? Fiancé was diagnosed and had surgery a month ago.. 3 months ago Ct and bone scan all were negative. Alk phos blood test normal.. And recent PSA 0! I know micrometastis can't be detected but even if he did have that wouldn't one of the tests above be off?
Posted 4/21/2013 6:30 PM (GMT 0)
If your fiance is suffering from bone pain, it is not due to bone mets...not with an undetectable PSA. Bone mets, even micro ones, would generate PSA. We have one guy here who had surgery followed by radiation, and his PSA is now over 40 and still no evidence of bone mets or any other met.

Not knowing how old your fiance is, is it possible he has arthritis?
Posted 4/21/2013 6:41 PM (GMT 0)
That's what I am thinking. He went from a VERY active 49 yr old to completely sedentary!
Posted 4/21/2013 6:45 PM (GMT 0)
Sounds like your fiance needs to see a doctor about this. Sedentary isn't good, especially recuperating from surgery. If he's in that much pain that he can't move like he used to, he needs to see a doctor.

One other thought: could he be suffering from depression? Some men experience this shortly after surgery, especially if there are issues around incontinence and ED. Your fiance was diagnosed at a young age and may be dealing with some emotional issues...regardless of whether physical or emotional, it seems he needs the help of a medical professional.
Posted 4/21/2013 6:49 PM (GMT 0)
Yes, depression is an issue unfortunately! He isn't incontinient but is having urgency with frequency especially at night. This is making him very tired. I hate to see him like this because I know it really bothers him. I keep telling him its still so soon after surgery and it will get better.
Posted 4/21/2013 7:10 PM (GMT 0)
In my case and a few others on this forum, bone metastases presented with low level PSA. In my case I had widespread mets develop while my PSA was still in the 2.5-3.0 range. Pain in the tailbone prompted my bone scan. In our cases PSA cannot be utilized as a disease marker. So the scenario is possible BUT... the cases that I've mentioned represent an extremely small contingent of the PCa population. Odds are certainly in your favor so relax. What did his biopsy and subsequent surgical pathology report look like. Sephie's query was well focused (any possibility of arthritis?).

Jim
Posted 4/21/2013 7:28 PM (GMT 0)
Biopsy was t1c but final pathology was upped to t3b.. I think this is why he thinks it has metastasized. I am thinking not though. I know anything is possible but I feel that if he is having pain from bone mets his PSA wouldn't be zero. It's all stressful ugh! Relaxing is needed
Posted 4/21/2013 7:32 PM (GMT 0)
Also the path was negative on nodes.
Posted 4/21/2013 9:18 PM (GMT 0)
Do you know his Gleason score from his post op path report? It can make a difference in how nervous it makes sense for him to be.
Posted 4/21/2013 9:42 PM (GMT 0)
Depession is a very common SE of PC. I thought that I was depression proof Burt 6 months after therapy I was a totally fagged out stick in the mud. I have since been put on Cymbalta 90 mg about 5.5 years ago and feel great to this day. I recommend that all guys with PC see a psychiatrist for an evaluation. . . . Q
Posted 4/21/2013 9:42 PM (GMT 0)
Gleason was 3+4.
Posted 4/21/2013 10:30 PM (GMT 0)
Asoutler, the mind is a very powerful thing, and many (most) of us know what it can do to the body. If your fiance is worried that the cancer has spread to his bones, sitting home and worrying won't accomplish anything. Is he due for a visit with the surgeon/urologist soon? If not, I suggest getting an appointment and having your fiance sit down and tell the surgeon his concerns. Nothing you or any of us says will likely stop his fiance's fears...seems to me he needs some reassurance from his doctor.
Posted 4/21/2013 10:35 PM (GMT 0)
That's what I am afraid of.. The power of his mind. The negative outlook.. The fatalist mentality. Granted I am not the one with cancer and I do love him so! 3 doctors have already tried to reassure him.. I feel like I have already lost him and he has so much more life to live.
Posted 4/21/2013 11:40 PM (GMT 0)
So much more life to live indeed. Drive that point home. The arsenal of tools available to battle this disease is growing exponentially.
It"s regrettable that you guys need to battle this beast ... but you will find some valuable support in this room.
Lean in.

Jim
Posted 4/22/2013 12:48 AM (GMT 0)
Asoutler, may I suggest that you bring your fiance here to read through the stories and post his own. More than likely, there is someone here (perhaps a few) who will easily identify with your fiance's feelings and help him through them. As he gains understanding and knowledge, he will gain strength.

BTW: I respectfully correct something you said in your last post about your not being the one with cancer. As of this moment, based on what the doctors and you and your fiance know, he does not have cancer. He may have it again in the future, but as of this moment, he is, for all intents and purposes, cancer free. That is something to celebrate.
Posted 4/22/2013 1:14 AM (GMT 0)
Thanks sephia.. You are a very wise person indeed!
Posted 4/22/2013 1:34 AM (GMT 0)
Possible, but highly, highly unlikely with those numbers and gleason score. perhaps he should see a good ortho doctor to check on other bone related issues and pain.

david
Posted 4/22/2013 2:17 AM (GMT 0)
Ask for a circulating tumor cell count ..much more accurate than PSA. Just a blood test but has to bet sent to a specialty lab and takes about a week to get results back, but worth it. Bostwick lab does my husbands CTC.
Posted 4/22/2013 2:27 AM (GMT 0)
Possible, but very, very, very unlikely. Oncas and I are rare in that we are dealing with bone mets with very low psa, for me mine was technically undetectable. But, in my 3+ years dealing with PC, I have seen or read about hundreds of guys and only know of less than 5 like that.

I'd go with that there is no evidence of cancer at this point and the pain is most likely from something unrelated and he should get it checked out.

Jerry
Posted 4/22/2013 4:01 AM (GMT 0)
Asoutler,

I would highly recommend going online to www.UsToo.com to see if there is a Chapter near you.

UsToo is an International Prostate Cancer Support Group which is manned by volunteers.

I started attending monthly meetings of the UsToo Group at

Hackensack UMC in NJ after my open Radical Prostatectomy in

February 2004 --- it has been a great source of comfort to me over the years and I think your fiancé would benefit by interacting personally with other Prostate Cancer Survivors.

I am now Co-Chairman of the UsToo Group at Hackensack UMC and

it is always a good feeling to be able to help ease the anxiety of a

newly diagnosed patient who is starting on his PCa Journey.

I wish you both all the best.

Bob

Posted 4/22/2013 12:17 PM (GMT 0)
Asoutler, every guy goes through this in different ways. When my husband was diagnosed, he was cool, calm and collected, and I was a basket case. After the surgery, I calmed down and he broke down...the stress, worry, and relief that the 7 weeks between biopsy and surgery were now behind him finally caught up. I suspect your finance will "snap out of it" but he may need help doing so. Bob1138 makes an excellent suggestion about seeking out support groups.
Posted 4/22/2013 12:26 PM (GMT 0)
Asoutler, a couple more thoughts: there's a current thread going on here calling other T3bs from another 49 year old guy...if you haven't read it, please do so (and perhaps get your fiance to read it as well).

You mentioned that your fiance is not incontinent but does need to pee frequently during the night which is making him tired during the day. There are meds that can help with urgency...Vesicare, etc. Also Kegel exercises (if your fiance isn't doing them) can help to strengthen the muscles that control the bladder and reduce urgency and frequency of urination.
Posted 4/22/2013 9:37 PM (GMT 0)
Jerry - I have had some email correspondence with Oncas and wanted to let you know your club now has a 6th reluctant member.

My PSA was 3.68 with priors of 2.62, 1.6, 1.2 and 1.6, so not overly high velocity but enough to warrant a biopsy that ended up Gleason 9 (4+5) in 7 of 12 cores with right PNI, worst ones 70% of 16 mm with right PNI in mid M2R and 35% of 13 mm in Apex A3R, with a couple other G9's one in Base B6R and other also in mid M5R.

My PSA density is also below the normal 0.15 threshold as at a size of 48.4, so density is about 0.07. Fortunately no symptoms other than the reports.

I am also most fortunate in that it is Oglio mets and have been accepted into UF&Shands Metastatic Disease Program with first appointment this Friday April 26, 2013. 5 tumors one in right sacroiliac, 2 in spine (bone scan report was vague such that I initially thought my whole body was riddled with stage 4 cancer, multiple thoracic vertebral bodies and right posterior ribs that also ended up being 2).

Also trying to arrange a consult with Dr. Snuffy Myers since I will be in DC area for a wedding. I would like to discuss with him areas he is exploring like a clinical trial of estradiol patches, Ketoconazole, Leukin etc and even Firmagon vs. Lupron after 1st 4 months.

Before I had ever heard of Casodex, Avodart etc on this and other forums, I was put on 4 month Lupron Depot solo on March 28, 2013, so far no symptoms other than the initial flare that has come and gone.

Another oddity that keeps me in the less than 1% club is this is on initial diagnosis rather than as recurrent after surgery, radiation, chemo etc.

My email ID is open in the forum registration if you or anyone wants offline communication about bone mets and low PSA, or whatever.
Posted 4/22/2013 10:01 PM (GMT 0)
Asoutler,

With his Gleason 7 score it is not likely that he has bone mets with an undetectable PSA. That can happen but usually it will be a man with a Gleason score of 9 or 10.

Welcome to the forum. Let us know how we can help
Posted 4/22/2013 11:03 PM (GMT 0)
Thanks everyone for their input. 3 months ago was his last bone scan and ct with contrast.. They both came back clear. And his first PSA 1 month after RP was zero so I am hoping and praying the pains are just from lack of physical activity. I will let everyone know. We have a plan in place with a rad oncologist on the 8th of May..
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