I'm new to PSA issues...looking for s... - Advanced Prostate...

Advanced Prostate Cancer

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I'm new to PSA issues...looking for support

bassguy profile image
30 Replies

I am 55yo. My PSA began giving me cause for concern just recently and I'm looking for some insight.

Some history - 7/16 PSA 2.1, 3/18 PSA 1.5, 2/19 PSA 4.6, 3/19 PSA 4.3, later in 3/19 PSA 3.8, DRE normal, & 4K test result 7%, 4/19 PSA 2.2, 6/19 5.9.

My urologist literally said "not sure how to interpret this" so we're rescheduled for another PSA next month. The big fluctuations - 1.5, 4.6, 2.2, 5.9 are difficult to get my head around. Anyone have similar experience? What I read on line is that it sounds like something other than cancer is at work but I don't know. Any words of advice? Too soon for biopsy, right?

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bassguy
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30 Replies
tom67inMA profile image
tom67inMA

Have you had a digital rectal exam? It would be a quick way to determine if your prostate is enlarged or has nodules without the risks of a biopsy.

bassguy profile image
bassguy in reply totom67inMA

Yes. DRE normal at time of 4k test.

tom67inMA profile image
tom67inMA in reply tobassguy

Oops, should have seen that in your original post. All I can add is that PSA isn't extremely reliable. I know men who have had double digit PSAs without cancer (including my dad), while mine was 2.0 a year before diagnosis of advanced cancer.

GP24 profile image
GP24

The fluctuations of the PSA value could indicate a prostatitis, an inflammation of the prostate. Could be treated with antibiotics.

bassguy profile image
bassguy in reply toGP24

No symptoms? No urination issues. No abnormal sensations. Maybe I do need another urinalysis. The one back in March was normal.

Thanks for the thoughtful response.

GP24 profile image
GP24 in reply tobassguy

You could just take antibiotics and see if the PSA value drops. My doctor recommended that when I was reluctant to have a biopsy.

bassguy profile image
bassguy in reply toGP24

I'm ready to biopsy now. Urologist is reluctant because he isn't used PSA values behaving like that. He prefers more monitoring. And he would also prefer MRI first, which of course insurance already denied once.

GP24 profile image
GP24 in reply tobassguy

If your urologist plans an MRI-guided biopsy, I would support that. You then first determine suspicious areas within the prostate using the MRI and then put the biopsy needles mostly into these areas.

ncbi.nlm.nih.gov/pmc/articl...

Also the usual antibiotics used with biopsies are now controversial. I recommend fosfomycin instead of ciprofloxacin. Ciprofloxacin and other fluoroquinoles are no longer allowed to be used with biopsies in some countries.

eu-focus.europeanurology.co...

bassguy profile image
bassguy

Thanks for sharing. This is overwhelming to say the least. We have discussed biopsy as recently as yesterday. But given the big drops in PSA combined with the low 4k score just 7 weeks ago the urologist still thought active surveillance was reasonable. Now I'm not so sure.

GP24 profile image
GP24 in reply tobassguy

The guidelines require a biopsy before starting active surveillance. Then, a year later, you should do a control biopsy because very often they determine a higher risk, i.e. Gleason score, then.

Philly13 profile image
Philly13 in reply tobassguy

In my amateur opinion your anxiety is important for your doctors to address. If I were you, I would push for the biopsy and find out. I am hoping you are needlessly worried and think you have cause for optimism. I know people who have had biopsies with less evidence. Most, but not all, have had good results. Find a urologist who will help relieve your anxiety decisively. Obviously this is not a professional opinion but I don’t see why you should worry when you can find out. By the way, I have been told PSA can fluctuate as a result of sex, exercise, different lab methods, and more. The biopsy is literally a pain in the ass (close to the ass) but really not a big deal. Anxiety is worse and being late to diagnosis is way worse.

407ca profile image
407ca

Bassguy,

If my uro suggested further monitoring I would certainly listen to him. I would check out other possible causes first. Why the rush?

I believe one of the most common laments from men comes from those that rush into invasive procedures without fully understanding the consequences, and every procedure

does has consequences.

If you are afraid of the mere possibility of cancer then you need to educate yourself about it BEFORE deciding on anything. Learning chases away the fear. If, after monitoring, it turns out that a biopsy is warranted then do as G P 24 suggested and get an MRI guided biopsy instead of a TRUS biopsy....much more accurate.

All the best.

Magnus1964 profile image
Magnus1964

I am not sure how concerned I would be. It sounds like you're doctor realizes Pca is an over treated disease. From all you have said this is something to watch but don't get overly excited about.

Tall_Allen profile image
Tall_Allen

This is exactly the kind of pattern one expects from prostatitis - it flares up and remits. Your 4Kscore is low, so you can avoid a biopsy. (In the future, you may find Prostate Health Index (PHI) - a similar blood test costs less and is covered by insurance). I also think you are monitoring it too frequently - the see-saw pattern characteristic of prostatitis will drive you crazy if you watch it every month. Every 6 months is fine.

bassguy profile image
bassguy in reply toTall_Allen

My doctor is sort of reluctant to think prostatitis. Wouldn't I have overt symptoms? Or maybe my symptoms are so mild I'm not even fully cognizant of them. Thanks for the reply.

Tall_Allen profile image
Tall_Allen in reply tobassguy

No- most prostatitis is asymptomatic. It is also seldom responsive to antibiotics. You just have to wait it out.

AlanMeyer profile image
AlanMeyer

I agree with Tall_Allen. Your PSA history is consistent with prostatitis, not cancer. Your lack of symptoms is common. As Allen says, most cases are asymptomatic and most do NOT respond to antibiotics. Without treatment, cancer caused PSA tends to go up, then up and up and up and up and up until you die. It can go down a bit from one test to another, but I think those small fluctuations are generally due to causes other than a regression of the cancer.

Prostatitis is the name of a symptom, not a disease. The symptom is inflammation of the prostate. It can be caused by bacterial infection, viral infection, or irritation of the tissue from any of a number of causes. Only a bacterial infection would respond to antibiotics and not even all of those do.

Some people do experience pain from prostatitis. In my own history of prostatitis I have sometimes felt like I was sitting on a hard lump, like a marble. It was not really painful but it didn't seem normal. That may be a symptom but I think most cases really are completely asymptomatic.

Biopsies are not altogether risk free and they're not always perfectly accurate. The biopsies sample the prostate tissue and in early cases of cancer it's possible for cancer to be in spots that the needles missed. When you need a biopsy you really should get one. When you don't, you shouldn't.

I'm not a doctor but I agree with your urologist that you probably don't have cancer but you should continue to watch it.

Good luck.

Alan

j-o-h-n profile image
j-o-h-n

I know it's easy for me to say CALM DOWN...do not panic... If you have to get a biopsy make sure the doctor knocks you out (anesthesia) because it's not a pleasant test. Would you tell us your location and where you are being treated, Doctors name(s)? Voluntary info.

p.s. Make sure doc knocks you out!

Good Luck, Good Health and Good Humor.

J-o-h-n Sunday 06/16/2019 1:22 AM DST

bassguy profile image
bassguy

I would like to say thank you to all of you, who responded to me both publicly and privately. This kind of support and feedback is exactly what I was looking for and you all provided it in a big warm way. I am in NYC, btw. My urologist is a seasoned pro with decades of experience and recommended by two different people. I find it interesting but unsurprising given what I've read about PSA testing that you are split almost down the middle. some saying "just quell the anxiety and have a biopsy", while the rest saying this seems serious but you haven't hit the point yet where an invasive procedure like biopsy is warranted. My doctor is thinking the latter. In a conversation with him just yesterday he says my PSA readings are not "behaving" like cancer based on his experience. But he is staying vigilant and cautious and is encouraging me to further monitor. He is not recommending a course of antibiotics for possible prostatitus yet either. My anxiety is my anxiety and I'm not of the mind that I should have the biopsy - yet - just to allay it. This seems to be the theme of all the research and scholarly papers I've read about PSA testing. It causes more un-needed treatment than it should. But again, if my doctor thinks it's time for biopsy he'll do one. This may happen at the next reading or in two more readings. he's trying to establish a trend at this point I think. And right now the trend is go down, go up, go way down, shoot way up...Plus he factors in a very encouraging 4K result. Maddening as all hell, but he did warn me at our first encounter that PSA and PSA testing are still not perfect at predicting cancer and he chooses conservatism and caution, at least for now. I will be in touch and will update you all...if that's okay. Thanks again! peace from NYC

j-o-h-n profile image
j-o-h-n

From NYC to NYC..... Down the line consider Memorial Sloan Kettering cancer center. 68th and York and/or Kimmel Center 68 near First.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/16/2019 10:48 PM DST

bassguy profile image
bassguy in reply toj-o-h-n

Thanks J-o-h-n. MSK is not in my healthcare network. should it come to the point where I need them, do you happen to know if they'll negotiate a private arrangement? something that won't bankrupt a regular working person?

j-o-h-n profile image
j-o-h-n in reply tobassguy

Now you got me.... sorry I don't know the answer to your question... You can always call them and find out.... It's one of the best cancer hospitals in the US.

Not to frighten you, but my Keytruda injections for my lung melanoma are $30K (15 so far) each....(thank goodness I'm covered)...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/17/2019 2:35 PM DST

baw1955 profile image
baw1955

As I conveyed privately, predicting you would receive numerous viewpoints for you to consider. Thank you for sharing your story. I've been tracking this site for about six months and your experiences don't arise often here -- good for all readers to see. Keep us posted.

Get an MRI. ASAP. That’s how mine was finally understood. Still don’t get why it isn’t first thing done. Digital exam and biopsy both half assed assessments. Missed mine completely. Don’t let them talk you out of it. Pay for it if you have to. Go to a big hospital that deals with cancer.

Longterm101 profile image
Longterm101 in reply to

Agree. You should order a 3T MRI

bassguy profile image
bassguy

Well, y'all. Here's my update...and again, my sincerest gratitude to everyone here. I can't tell you how appreciative I am and how helpful the input is. So after that last PSA, my doctor, thinking "wtf?" convinced me to retest. So I did. And I went down again. 4.2

So---over the past few years/months it's 2.1, 1.5, 4.6, 3.8, 2.2, 5.9, 4.2. Quite the seesaw. What is still a big concern, and no one mentioned this or asked, is my free % is also fluctuating. Went from 12% in Feb to 22% in April and then 14% and 11% in June. After some wrangling with my insurance carrier, my urologist, who really did go to battle with them (they denied an MRI twice prior) finally authorized a 3T mpMRI. I am scheduled for this Thursday morning. (to carlo8686...I was going to pay for it regardless. I DID reach that point and I even negotiated a fair price with the radiology center). I realize this is not a perfect test. I think the negative accuracy is what 80-90%?? At least this is what I consider, finally, a REAL first step. My urologist is still sort of in this head-scratching place as far as interpreting the PSA history, but at least now we get to actually see what's happening. or hopefully not happening. peace to you all. I'm glad I have this place to share.

LearnAll profile image
LearnAll

Increase in PSA is not only because of prostate cancer....in fact ..inflammation of prostate (prostatitis) can also cause increase in PSA. A fluctuating PSA is more likely with prostatitis. A rising TREND is more indicative of Cancer.. Repeat PSA test a few times and see if it is trending upwards...Digital exam should be repeated to search for any nodule.

bassguy profile image
bassguy in reply toLearnAll

Thank you LearnAll. Just had a 3TmpMRI in late June. PiRads score 1. Nothing significant. The doctor who interpreted the results said it looked consistent with BPH. Apparently my prostate is quite large but uniform in shape (and all DREs thus far have been normal). I am learning about this stuff every day. And I'm NOT repeating a PSA test until the fall.

LearnAll profile image
LearnAll

congratulations...Having BPH is not that bad as 60% men by age 60 yrs have BPH. .its an ageing phenomenon just like greying of hairs or having cataracts. A large but soft prostate without any nodule usually indicates BPH. I hope your Uro prescribed you Doxazocin or flomax or something for BPH as they keep symptoms under check by reducing size of prostate, If you don't have symptoms .no med needed .just need to monitor it.

bassguy profile image
bassguy in reply toLearnAll

Thanks again. No symptoms. Nothing prescribed to me. Just on-going monitoring, DRE, etc. I'm only 55, btw. Although I understand I'm still in "typical age range" for BPH.

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