Newly diagnosed non secretor

My husband, age 59, was newly diagnosed Friday and saw the Urologist this morning.

This all came on quite suddenly. No symptoms, no enlarged prostate, no peeing issues, no getting up to go to the bathroom ten times a night. His PSA test at his regular doctor visit went from a 2 to a 3.6 in a year's time. His doctor didn't like the rise rate so sent him to a urologist. The urologist wasn't concerned about the number and did a digital exam and said the prostate felt normal. He chose to do a PSA free test saying that would be the definitive on where we would go from there. The PSA free test came back as an 8. Even his PSA level rose to a 3.8 in the short span of a month. Decided to go straight to a biopsy which was done 3 weeks later (a week ago Friday). They took 8 samples. The urologist even said that the prostate looked good and he had trouble getting samples because it was so small. But who knows what lurks inside? The doctor told us this morning that out of the 8 samples taken the 4 on the left were 70% cancer and 1 out of 4 on the right was 3% cancer. His Gleason score is 7 (4+3). He also said he was in the intermediate risk range so we had some time to figure out what we wanted to do.

The dr's only advice was to take the whole prostate out. He says he suspects my husband is something called a "non-secretor" which takes all forms of monitoring the prostate off the table if we choose to do anything except surgery. As a non-secretor he doesn't put out the same amount of PSA that other men do which is why his PSA number in the beginning was so low and not indicative of cancer. Has anyone out there been labeled a non-secretor? He totally disregarded wait and see and any other form of treatment other than surgery.

We meet with a doctor who would put in the seeds if we choose to go that route next week. At the end of next week he will undergo a bone scan and cat scan to see if it has spread anywhere. The Monday after that we will meet with the surgeon who would do the surgery if we choose that route. He will then give us the test results from the scans.

My questions are simple. Anyone a non-secretor? The doctor said there is no test to prove or disprove whether my husband is. He just said it was a gut feeling. I can't even really find any information on it when I google it to see the "odds" of the doctor being correct in his assumption. If he is indeed a non-secretor, our options are very limited. If we try the seeds and they don't work, the doctor gave us a less than rosy picture of the outcome of last ditch surgery. My other concern is how do I help my husband? What do I say or not say? I want to be the best advocate/helpmate I can be as we navigate through this. I can't say I understand because I've never, nor will I ever be, in his shoes. Incontinence, impotence, bleeding. What a rosy future that looks to be to him.

I thank you for all of the help I gleaned from here before we went. I had many of your thought out questions in hand and knew much more about the prostate than I ever thought I wanted to know. Even with all of that, this is very overwhelming. The doctor did give us a book to read that he says will answer most of our questions. I don't have it with me right now so I can't even tell you the name of it.

Thanks for listening to this wife who is still in the state of processing.

Welcome to HW, sorry you need to be here.

It's a kick in the head for sure. Your husband needs to be treated. With his numbers all the main modes of treatment will work and are likely curable - surgery, seeds, beam radiation. The difficult choice will be deciding what to do. The only good news is that you've got the time to make an informed decision. No need to rush into something, but don't take forever either. Some time in the next couple of months would be good.

I have never heard of 'non-secretor' before so can't offer any insight there.

UROs are surgeons and surgeons recommend surgery. Get a second and third opinion and do see an RO or two. Maybe even a different URO.

Hang in there, we're here most days if you have questions.
Andrew

Yes, I'm familiar with PC cases with low PSA levels but higher grade Gleason findings; predominantly grade 4's (or 5's), like your husband. These are atypical cases, and often difficult to diagnose for obvious reasons...the people don't react to the low PSAs. Please read the sticky thread for newly diagnosed men at the top of the main page, and consider having his biopsy slides re-read by a prostate-pathology expert. High Gleason grade with low PSA is nothing to mess around with, and may need aggressive action...but you'll want to be darned sure that the biopsy read is correct. about 20-25% get downgraded after being read by an expert (and about 25% get upgraded).

Let me also welcome you, although I'm sorry you need to be here. "Non secretor" may very well explain your husband's low PSA and his diagnosis, but I wouldn't worry too much about that for now--at this point he's been diagnosed with what would generally be called unfavorable intermediate risk, he should be treated and you'll need to figure out the best treatment for the two of you. That should be your major focus.

As mentioned in the newly diagnosed sticky, your husband should get a second option on his biopsy slides from either Bostwick or Epstein, who are the gold standard for this. It's probably the easiest thing to do from here on out. You definitely want to make sure your husband is a 4+3, as opposed to a 3+4 or a 4+4.

Regarding treatment, you've already seen that a urologist will typically recommend surgery because that's what they do. Surgery could be your treatment of choice, but check out other options by talking to the best doctors that practice that treatment. "Seeds" are considered low-dose brachytherapy--there's also high dose brachytherapy and SBRT to look at on the radiation front. Each treatment has its own unique side effects and you want to think closely about which ones you can best handle. (Particularly since any of the treatments have a very good chance of curing your husband.) If you tell us where you're located, we might be able to give you some recommendations.

I'm glad you're advocating him. I was fortunate to have an extremely supportive spouse and it made all the difference in the world. Let us know how we can help. Good luck!

Welcome Annie. I think a true non-secretor PCa patient would have a PSA below 1.0 and high Gleason. I had PSA 4.1 and G 4+3 and 10 biopsy samples, similar as your hubby (3.8, 4+3, 8) and none of us are true non-secretor (in my opinion). I selected surgery and do not have any of "Incontinence, impotence, bleeding" as you wrote about. Good Luck in the treatment you select.

Thanks to everyone who has responded. We are in Central Il and have already discussed heading north to Zion, Il to the Cancer Center located there.

I already have started my note keeping and have gone to all appointments including his biopsy. Thanks to what I read here, I began questions and notes early.

The urologist didn't impress upon us that my husband is high risk. He told us we have a window of six months to decide. I know it won't be that long, but he was also fairly adamant that in his opinion we had no option but surgery due to the lack of ability to monitor any other treatment after it was done because of my husband's lack of producing PSA. I guess it must be fairly unheard of. Leave it to my husband to be unique.

I have been trying to convince my husband to send his biopsy off to be looked at but he sees no point in it. He will still have cancer and it may come back better scored but still cancer. It also won't change his non-secretor status or his treatment options which is why we must seek a second opinion.

I thank you for this welcome into a club that no one wants to belong to.

The second opinion on the slides won't come back and tell your husband doesn't have cancer. But it would be invaluable in telling you aggressive his cancer is. PC isn't one disease--it's many and the challenges facing Gleason 6 patients is very different from Gleason 8s. And I'd say that the difference between the two types of Gleason 7s (3+4 and 4+3) are also important. (To that end, as a Gleason 7, your husband would not be considered "high risk," but certainly the 3+4 diagnosis is the better of the two.)

Not quite sure how far that makes you from Chicago, but you have the Chicago Prostate Cancer Center there. Dr Brian Moran is one of the top LDR brachy (seeds) specialists in the country and several folks here have used him.

PS In all my time here, I don't recall low PSA output raised as a reason to have surgery. Your husband's case is unusual, but it's not that unusual--we've had some Gleason 9s with similar or lower PSA. I'm not a doctor, but from a personal perspective I don't think that would be one of my top factors in choosing a treatment. I'd be much more concerned about SEs.

one more thought about his PSA: if he was taking any one of the common prostate supplements that contains saw palmetto, it can suppress PSA, usually about 50%..which lines up with your husband's doctor's statement about what his PSA should have been.

Some one please tell me if they think non-sequitur is not the word the medico used, Non secretor seems to be an odd phrase for anything in PCA. I'm seeing it being ing interpreted as a secretion of sort by the threader and also see how it could be interpolated{ is that really a word} by knowledgable members as the infamous hi gleason low psa variant. Im not sure about that…My educmacated guess is non sequitur…ironically to my mind it follows logically. But then Im an artist who likes hi octane brewskies and of course as crazy as I wanna be…

Post Edited (Bozolidat) : 4/4/2016 6:42:52 PM (GMT-6)

Annie, welcome to our little corner of the world.
I would concur with the other posters, who suggested getting a second opinion On the slides, push your husband to do so. It may not make a difference, then again you never know.

My biopsy was originally graded Gleason 8 (3+5) high risk. On second opinion, I was downgraded by Epstein and Johns Hopkins to G6. Turns out, after looking at the whole prostate after removal, I was in fac G7(3+4).

But the second opinion told me that I was NOT high risk. Grading PC is a very subjective process, two pathologists can look at the same slide and call them two different things. That's why we recommend Epstien, or David Bostwick.They are the acknowledged experts and only look at Prostate Slides, as opposed to most local pathologists who may be generalists, looking at breast slides one minute, and prostate the next. Even those who are genutoury pathology specialists, will look at prostate slides, and bladder slides, and other similar cells.

Convey the reasons for getting a second opinion, and he might see his way to agreeing.
If it turned out he was (3+4) it would be a fair difference.
In either case though, please know that this is treatable, and a good likelihood that it will be curable

MichaelT…I wish I had thought of that…
TA forgive us our sins….

Annie, I'd note that I presented with a PSA slightly lower than your husband, and never got told that it was 'too low to be useful'. The 4+3 gleason is worrysome. The important consideration is whether it is fully contained. Your chances of a good outcome are high.

I was treated, as I said, at Barnes. I went for robotic surgery with Dr. Figenshau, and everything has turned out well. I recall specifically that he called me, at home, with the results of my surgical pathology. A nice touch that really wasn't necessary.

I've known a number of people personally who have been treated at Barnes/Siteman, and their reputation is well deserved.