Low PSA with possible symptoms, would... - Advanced Prostate...

Advanced Prostate Cancer

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Low PSA with possible symptoms, would like help with next steps please

Karkawry1970
Karkawry1970

Hi all

I have thought long and hard about posting here out of potential disrespect for those diagnosed, but I am at a loss to know what to do next, so here goes...

In mid-October of 2017 I was dropping my daughter at school in the car. I parked the car, made sure it was safe to get out and as I turned to exit the car I felt a muscle go on my lower back, right hand side. I lived with the pain for a few weeks as I have had lower back problems in the past. The initial pain went and I was left with dull pain, but persistent. I spent November and December using an Osteopath with no change of symptoms after religiously doing all and more of the exercises prescribed.

I am naturally an anxious person and Googled about Chronic back pain and read about PCa, I then recalled being caught out a few times in the car and walking to work needing to urinate urgently, not every day but the seed started to grow.

I went to my GP in panic mode and announced I thought I had Advanced PCa, I was given two DRE's (by two separate GPS’s) , Urine test and bloods were taken two days later. These came back a couple of days later and I was told the only thing that flagged up was my Thyroid, clinically underactive and to take another test within the next few weeks. My PSA was 0.04 and (should have mentioned earlier) I am due to be 48 in May this year.

I have since discussed my Urination more with my GP and said how often I go, up to 8 times a day, no Nocturia, with occasional urgency. But I fear I have become hyper sensitive to my bladder and think that there is a possibility I have skewed what I think is normal and bladder habits have changed due to anxiety and over analysing (I hope this makes sense).

Meanwhile I have been passed to a second GP at the practice who has assured me, like the previous one did that they thought the 5 months of back pain was normal mechanical back pain and the urination is also normal. He took the time to go over my results and try to reassure me, but this only lasts minutes until out of the surgery and the wheels start to turn again.

My work has been very good about stuff so far, my partner thinks I am OK as she knows how I operate with anxiety. I have had waking insomnia for two months now, basically waking at between 2 and 3 am and tossing and turning till dawn, I am feeling muscular sensations I haven't had before, weakness, fatigue, stabbing pains in muscles, hip bone pain, popping and cracking of all my joints, including crepitus in my right knee which I am pretty sure I never had before, the bones in my neck crack all the time. There is a lot of "stuff" going on. I know some of this can be attributed to the anxiety and sleep deprivation, but I have never had a back problem last more than a couple of months, and it doesn't feel like anything I have had before. The GP has me on Physio and I have had two sessions already, but again there's no change at all.

I am terrified I have been overlooked because of my age and no family history/ethnicity issues. But I am now left with little else to do, my GP said a further PSA test would make me even more anxious if it were even slightly higher, and gave me the "you could be run over by a bus tomorrow" anecdote, and prescribed Citalopram for anxiety. I think most of my fear is fuelled by the unreliable nature of the PSA test and I have read so many stories here of guys my age (and under).

Again, I really hope don't rustle any feathers here, I’ve read a lot of your stories and am in awe of the courage and determination you all have, so thanks for listening.

What would you do?

49 Replies
oldestnewest

I can't tell you not to worry, that will only make things worse.

Try taking Saw Palmetto twice a day. Get a good brand that says it is extracted with CO2. It helps with prostate inflammation and frequent urination.

That supplement should be a birthday gift to every man when he turns 45. The symptoms you describe are natural, I had them. I've been living with PCa for 11 years and my PSA has been over 70. But Saw Palmetto was a great help, and I still take it, with my doctors' full approval.

Good luck!

Karkawry1970
Karkawry1970 in reply to FCoffey

Thanks, I will give that a go

The only way to tell for sure if you have cancer is a biopsy. Sorry if I missed it in your story.. did they do a biopsy ? My husbands prostate biopsy was done in an exam room and although unpleasant was not horrible. It might put you at ease... it will make you sore.

Hi, thanks for replying. I have heard mixed thoughts about biopsies, would prefer imaging route first I think.

It makes sense to try imaging first.

Welcome to this group of supportive people, glad you found it. Don't worry about posting here if you don't have PCa. I'm sure everyone here hopes you don't have it too.

The problems you have had with your back sound really similar to what I had and others as well. Of course, no one suspects cancer when they have problems like that and usually it's not the case.

The way they found mine was to first start with a CT scan. On the CT scan, they saw a suspicious area on my pubic bone and then did what is called a T99 bone scan. That lit up like a Christmas tree, showing the "mets" from my cancer. Then a biospy was taken of the bone which proved it was PCa.

There are other kinds of cancer that can go to bone and also PCa that does not make PSA. I'm not a doctor, but I would suggest getting imaging CT and/or MRI to see what's going on and then go from there.

Good luck and feel free to post here. Let us know what you find.

Thanks for replying Gregg, and I think your recommendations are sound considering where I am with this.

I really hope it isn't as well, but I am suspicious and that is enough I suppose. There's a huge part of me that doesn't want to know and just carry on oblivious. But I am a father of two so this would be reckless and unfair, I have to give myself the best chance to be around as long as possible for them.

gregg57
gregg57 in reply to Karkawry1970

Everyone here knows what you are going through. We all know first hand what it's like to go through the diagnosis stage, all of the uncertainty, fear, etc. You are doing the right thing by checking everything out, I wish I had gotten on top of mine sooner.

It may turn out that it is something a lot less serious than cancer. We're here to help and support all of those who need it so feel free to let us know what is going on or if you have any questions. Hoping for the best for you.

PLEASE! GO to a urologist!

Karkawry1970
Karkawry1970 in reply to spinosa

My GP refused a Urologist referral

spinosa
spinosa in reply to Karkawry1970

Get a new GP.

Anxiety is certainly your biggest problem. It is feeding your hypochondria, causing you to pee more often, making you more distressed by pain, and probably robbing you of precious sleep. I suggest you do something about your anxiety before it kills you. From personal experience, I strongly recommend a combination of psychotherapy and Mindfulness. That will help break you out of the mental prison you have made, and get you focused on what is real in the present moment. You obviously do not have prostate cancer.

Hi Tall Allen, Thanks for taking the time to reply, I would like to know how you can be so sure I don't have it? I know you are very active and respected on another forum which i have been to (but not posted on). So I respect your reply. I would like to just add that i am not trolling, and do have real concerns and although I did mention the anxiety word a few times, i would hope people can read between the lines and for that word not to skew any replies, thanks again.

Because your PSA is 0.04. You are also only 48. AT MSK, anyone with those traits would be told to come back in 10 years for another PSA test. Both make the probability of prostate cancer negligible.

You are constructing a spectrum of symptoms (back pain, frequent urination) to reinforce the story you are telling yourself. This mental construct WILL damage you if you don't do anything about it. You are avoiding the real problem, a problem you won't be able to solve on your own. Your anxiety is real and in the present -- it is the only real problem you have.

Don't take supplements, don't have imaging, and for God's sake, don't have a biopsy. Address the real problem.

Mbolduc
Mbolduc in reply to Tall_Allen

I tried all the routes of physical therapy, meds for the pain .. etc. My Primary Care swore up and down it was arthritis. Back to PT again. When it got to the point of the pain in the back moving to the hips and groin and then I was in the bushes throwing up she finally agreed there is something else going on.

I saw urology, had biopsy and PSA done. Low PSA and 9 taps of the prostate showed no cancer. The CT scan on the other hand showed massive cancer at L2 - L5 of the spine and lymph nodes in the groin.

Get the scans done now.

I am 4.5 years into treatment. It is treatable but incurable.

Tall_Allen
Tall_Allen in reply to Mbolduc

Mbolduc, what was your PSA and how old were you? What kind of cancer did you have?

Mbolduc
Mbolduc in reply to Tall_Allen

63 years young

Stage 4 prostate cancer ... PSA of 4.0

No Gleason # as PC was not found in the prostate.

Biopsy of the tumor on the spine and lymph node came back as prostate cancer

Tall_Allen
Tall_Allen in reply to Mbolduc

So you see your situation bears no relation to the OP who is only 48 and has a PSA of 0.04.

If you had no Gleason score in your prostate and metastases, you had a rare variant, and not ordinary prostate cancer. Look at the pathology report to see if they identified it as neuroendocrine, signet ring cell, sarcoma, or any of the other known variants. The kind of prostate cancer it is dictates the therapy that it is most likely to respond to.

Welcome to the group, I certainly hope you do not have PC.With that psa I certainly do not think you have it, but as Spinosa suggested a visit to a urologist to find out about frequent urination may be a good idea, also scans to find out what is causing the pain may be a good idea. Gregg makes some good points. It is very good you are proactive and did not ignore symptoms like I did when I had frequent urination for over a year, and panicked when someone told me it could be diabetes, Going to the clinic I discovered I had stage 4 PC, and wished it was diabetes. I wish you the best, Great you are so proactive.

Karkawry1970
Karkawry1970 in reply to Dan59

Thanks for replying Dan, and sorry you found out that way. Have just hit a brick wall with the NHS I guess there's only so far they are prepared to take guys my age with these tests. All the best to you too.

Dan59
Dan59 in reply to Karkawry1970

Keep right after those long white coats until you get an answer to your issues, squeaky wheel gets greased in most cases no matter the age. Always be polite! As I am sure you are.

Mbolduc
Mbolduc in reply to Karkawry1970

Have you had xray/CT scan. If not able to see Urologist see if they will scan for back pain.

Karkawry1970
Karkawry1970 in reply to Mbolduc

Hi Mbolduc, I haven't had those yet, I can have X-ray would that show up lesions though?

I agree with Dan. Your PSA is very low which is a good sign for not having PCa. False positives are not uncommon with PSA tests. However, false negatives are very rare.

Karkawry1970
Karkawry1970 in reply to gregg57

Thanks Gregg, do you think it'd be an idea to convince my GP to get another test?

gregg57
gregg57 in reply to Karkawry1970

I don't think you need another PSA test. I would focus on the pain issues you are having throughout your body. I ignored mine as long as I could, that turned out to be a big mistake. Listen closely to what your body is telling you. That's the lesson that I learned.

I don't think I've ever seen anyone report a PSA of 0.04 before except for men whose prostates were already removed or radiated. Could it have been 0.4? Even that would be very low and indicative of a small and healthy prostate, with no cancer, no infection, and no inflammation. There are some rare forms of prostate cancer that have low PSA, but even for those it seems to me that the reports I've seen in this forum have all shown PSA levels above 1.0.

Urinating 8 times a day seems to me more than I did at your age though now at 71 it's pretty normal for me. But it still doesn't seem to me to indicate cancer. Anxiety can certainly cause you to feel an urge to urinate more often. And if you expect to need to urinate, you will need to urinate. I think it's a very common psychological phenomenon.

I think the pain you are experiencing in your back means that you do have some kind of problem that's causing it, but I'd be very surprised if it's prostate cancer. It could be a pulled muscle, a pinched nerve, or some other mechanical problem. If it is, it's not uncommon for problems like that to hurt for a long time. I once did something to my ankle playing basketball when I was about 15 or so. The next day it hurt and it continued to hurt for a year. I suggest trying heat or ice, or alternating heat and ice, to see if you get any relief. I'd also try ibuprofen.

I also like Tall_Allen's suggestion of getting some treatment for anxiety. I like his ideas of getting therapy, possibly including meditation or other ways to help you think your way out of the problem - which has some advantages over using pills. You may find a good book or a DVD on the problem that can help. I'd check out the public library and/or bookstores and see if you see something that appeals to you.

Good luck with it.

Alan

I really do not think you have PCa. However, my opinion is that following up on the back pain with an MRI is the right thing to do. Additional DRE and PSA will be negative. But if the back pain is from cancer, it will show on MRI. There ARE strange cases of low PSA and spine mets. I was one of them. Pee issues, back pain, and PSA around 3 at age 55. I got ignored. Turns out it was stage 4. So my advice is MRI.

Thanks for all the comments everyone.

It really was a last resort to come here and bother you all, but I have digested all that has been advised and decided to get an MRI of my lower back.

Those of you that mentioned anxiety are correct, my gran was on medication from the 50's until her death, my mum is on Prozac and has always been a bag of nerves with health, and everything else come to think of it. I have CBT booked at the end of the month, so hopefully I'll be able to put that into practice.

Thanks again, I'll will be sure to update you here when I've been checked,

Kark

Like the others in this little extended family, I hope and pray that what you are experiencing is not indicative of PCa. My case is similar to Dan59’s. You are doing the right things to keep on top of the issues. Your PSA is very low. That’s a good sign. Has your doctor done a DRE (digital rectal exam)? At diagnosis my PSA was only 4.65, but my family doc did a DRE and felt a hard spot, so he referred me to a urologist, who confirmed the DRE impressions of my family doc. He did a biopsy of my prostate gland, which showed cancer in 10 of 12 cores, Gleason score 7 (4+3). He then ordered a PET scan which showed one brightly glowing metastatic lesion on my pubic bone. My only symptoms at that time were frequent urination particularly at night, and ED.

I hope you see a urologist. Get an MRI, and if you haven’t had one, a DRE. And as Tall_Allen mentioned, try to get some help for your anxiety issues. We’ve all been where you are with the stress and anxiety. That will be a good start. Hopefully, what you have is not PCa, but if it is, you are doing the right things to be proactive and catch it early.

Best wishes. Keep us informed of your progress.

Mark

Hi Mark, thanks for the reply. I have had two DRE's done since February, both returned smooth and soft with no evidence of hard masses, lumps (two different GP's). So I guess that's another plus.

I asked for a referral to a Urologist but my GP didn't entertain the idea, as he'd done a DRE and went over the results with me. I will push a bit harder and try to get the Uro referral and the MRI and get this all resolved one way or another

It sounds like you are keeping on top of it. Getting a second opinion never hurts, it’s your right as a patient, and it could save your life. Keep the positive vibes going!

Sounds like classic Pelvis Floor Dysfunction to me, which is extremely often mistaken for prostate issues, namely prostatitis, when it is in fact tight pelvis muscles. Read a groundbreaking book called 'Headache in the Pelvis' - it mimics a huge array of prostate issues. Frequent and or painful urination, pain during ejaculation, muscle aches anywhere from bully button to knees and so forth.

Also, please be aware that thinking you have symptoms can make you actually feel them. If you are thinking about and looking for symptoms, you'l likely find them.

If I had a million pound, I'd bet it all you don't have prostate cancer mate. Go and find a PT who specialises in pelvic floor dysfunction, I'm sure you'll find your answer there.

Hi Karkawry1970 ,

I am am GP in Australia. I ran a regional sexual health clinic in a large regional city in Victoria Australia. I looked after a large number of patients with your condition who thought they had HIV despite all the evidence confirming that they did not. There distress was significant. There is a large amount of literature about illness anxiety. Reassurance is a very short-term fix which does not address the problem. There are large number of alternative health practitioners and some conventional medical practitioners who make a lot of money out of people like you and they do not help them.

I have looked after many people with your condition.

It is very serious and very disabling.

You have illness anxiety and you need help.

The first step is to see your GP with this request.

"I have significant illness anxiety and it is causing me great distress. When I ask for more tests please do not do them. I realise that initially I get reassurance from those tests but very quickly the anxiety re-emerges. Please direct me to specific psychological therapies and perhaps but not likely some medication."

Without a very directed approach like this the prognosis is not good.

You have already showed immense courage in exploring this.

If you continue with your courageous and open approach you will do better than most.

Those of us who have significant metastatic disease (like me) have a much easier psychological process than you.

Good luck, be open, be courageous and expose your disabling fears to your medical support team.

It does seem that illness anxiety is at work in your situation, whether there is physical illness or not. I'd suggest arranging an MRI of your pelvis. This is very likely to confirm the presence or absence of PCa, (and possibly any other condition) given the level of symptomatology you say you are experiencing. If the results are negative, and if that does not relieve your anxiety about PCa at least, I hope you will seek counselling/therapy for it. Best of luck in resolving this situation. It's apparent that you are distressed by it.

See a urologist or oncologist.

I had the same situation with a LOW PSA but extreme pain in the back and hip. CT scan done and I found I had metastatic prostate cancer that was on the spine and lymph nodes in the groin.

The Dr. Tested my prostate and I had NO cancer in the prostate.

Push the issue NOW

Never be afraid to talk about these symptoms, mine started off as kidney stones , number one get rid of the Gp, go to a good urologist,tell him what’s going on, see if he will give you a cat scan with contrast. Your gp should have given you a full blood panel to check on all key issues . I chased back pain,kidney pain ,finally pain when I took a deep breath . Then poof stage 4 pc.

Thanks Larry, had full blood panel done, Calcium, Phosphate, red and white cells all healthy and within range

My husband had all those symptoms, and GP said it was a bladder infection, and prescribed antibiotics. His PSA was low. I pleaded for GP to make him appt at Urologist, which she did. Urologist felt lump immediately, and performed biopsy next day. He called him at home to tell him it was the worst. He then had a scan & was referred to U of Mi where 4 doctors said there was nothing they could do & walked out on us. The cancer had spread to his lymph nodes from the prostate. Suddenly he had 4th stage cancer with a Gleason score 9. He had the pain in his hips, legs, & urination was not so much an urgency...but stop & go. He also had another big sign that nobody has mentioned. It was "retrograde ejaculation" & a wife will notice that symptom, especially if your sex life has been super active. Suddenly, there is no sex life. Husband was diagnosed end 2014. His story is similar to many replies above. What makes his different, is that his mom had severe arthritis, and that is part of his problem...but he was one of 4 men in Mi to qualify for a clinical trial that lasted 2.5 years, until it stopped working last summer. The drug now has a name..Ibrance. Another story, but it helped shrink cancer in his lymph nodes. He now takes Zytiga without Prednisone, because the prednisone caused his blood sugar to climb to 600. Now, he is a full blown diabetic, giving himself shots, on top of everything. His pain is excruciating, and he suffers constantly. He was given morphine recently, but it made him extremely depressed. He is very anxious, too, but has a strong will to live. Doctors at U of Mi did note he had cancer for a few years growing before being diagnosed in end 2014, despite his low PSA score. My advice is to push for the CT & MRI & definitely get another doctor if GP will not refer you to a real Urologist immediately! And I am thinking, too, like some of the replies, that you need to calm your fears, and find a specialist in pelvic pain if the scans show nothing. My husband also has taken Lupron shots every 3 months, first with Casodex, now with Zytiga. These shots made him "pre puberty" & that is another story!

My two cents. I agree with most above except one. Having a 0.04 PSA and getting another test with results that low or lower will be rare adding to more anxiety. I might suggest seeing an orthopedic, who would request an CT or MRI showing what is going on, eliminating or confirming any cancer issues, hopefully identifying the real problem. Maybe I missed it, I looked twice, did you ever mention your age? Maybe you'd prefer not to.

As far as the anxiety, some counseling or therapy would be a start, but I don't think specific psychological therapies are needed just yet, you've admitted you're a worrier, get a grip, hang on, READ ON and give these fine folks here a chance first.

This in itself is a form of therapy and there are some really intelligent members who can hang with most MO's not to mention a GP. Most all of us are in a little worse off diagnosis than you so far and we seem to manage, so you managed to make the first step by asking and no one ran you off, so keep using it. These guys (and gals) can help you. Personally, I like to try and add a little humor, but we had some fun a few days back with some magic pills and an anti-gravity machine so I'll wait for a better opportunity.

Hi Texan, thanks for the reply, humour is missing from my life right now, used to have it in spades. I'm 48 in May

You've received a lot of advice- some of which you've already done, like the DRE (2x). You are not in a health plan where you can just go to whoever you want to see. Those plans usually reward MD's who keep referrals low so as some have already advised- drop the PC talk and ask your Doctor to find out what is causing the back pain- a bone scan is kind of cheap and would show cancer in the bones- hopefully he'll come up with that on his own- things go smoother if the MD thinks it's his idea. You didn't mention the amount of Citalopram you're taking- maybe you can get a boost in that to cut down on the urination. Xanax is better for Anxiety and very cheap but addictive if used for a long time. Biopsies are available that are much more accurate than the 6 sample i had 15 years ago. Not sure if they have them in your area -they require full anesthesia because of the number of samples they take. I used to have panic attacks so I have some idea how terrible this is for you. The main things you can do is work on getting a bone scan and get more help with the anxiety- don't look beyond that as you'll make things worse for yourself. Good luck.

Get your hands on a good chainsaw and get to work. My point? Life continues.

Here's what I would suggest. Do a daily regimen of stretches. You can find helpful YouTube videos or google the subject. Tight hamstrings can cause back problems. Join a fitness club and hit the gym 3 times a week. You will improve your self image and sleep better. Did you have a traumatic childhood? If so, make an investment in counseling to work through those issues. Do see a urologist. He will give you an ultrasound test to verify that you are fully emptying your bladder. Ever hear of BPH? Benign prostatic hyperplasia -- enlarged prostate. I had that 10 years ago and it is a real condition that can make you want to pee a lot. TURP surgery is the answer for that. Saw palmetto is only a bandaid for that condition. You are doing the right thing by reaching out for help. Good luck.

First of all take a really DEEP DEEP Breath...

I am not a doctor and if I were I'd be a gynecologist. The amount I know about Pca you can fit in Buddha's navel and still have room for plenty of lint. What I do know is that you've received advice from "experts" here in this forum. So heed their advice. My two farthings worth of advice would be so see a Urologist asap. If your GP will not give you a referral to see a Urologist then just tell him you'll piss all over his examination room and or waiting room.

To vent your anxiety, do what I did. I got myself a blow up doll and I beat the xxxx out of her every night. Now be careful and don't beat her too hard because she might begin to like it.

Good Luck and Good Health.

j-o-h-n Wednesday 03/21/2018 9:01 EDT

*** SNOW SNOW AND MORE SNOW ***

I would suggest that you see a urologist. Urination problems sound like BPH benign prostate hypertrophy. Very common in middle age but there are very effective noninvasive as well as minimally invasive treatments. With a PSA so low your chances of having PC are nil. When PSA goes above 4.O then you can start worrying. As for the other symptoms I can’t say but certainly anxiety,insomnia and BPH could account for a lot of it Again, see a board certified urologist.

Darryl
DarrylAdministrator

May I suggest that you join our Anxiety Support group. Just click here and you’ll be good to go. healthunlocked.com/anxietys...

Karkawry1970
Karkawry1970 in reply to Darryl

Thank you Darryl, I'll join now.

Quick update to this post, waiting for my MRI results that are in but haven't been read by the GP yet, think the sneaky bugger may be waiting till tomorrow to drop the news for the weekend.....

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