Prostate cancer worry : Hi, long story... - Advanced Prostate...

Advanced Prostate Cancer

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Prostate cancer worry

Redcollector profile image
35 Replies

Hi, long story short , I am 65 have never had a psa above 2, had a scan last year not for cancer specifically it reported that I had a ‘small sclerotic lesion within L2, taken as a benign bone island’ so didn’t think anything of it, last 3 weeks have started to have back pain accompanied by loss of weight. As above psa low but have trouble peeing for years which has been put done as enlarged prostate. On using dr google I tried to learn as much as I could about bone islands and whilst it does suggest that most are benign I have seen some metastatic prostate cancer.

So am awaiting a new psa testing result and scan this week.

Anyone here experience having firstly only discovering they have prostate cancer after it has sorrad to spine and anyone had PC with a very low psa?

Thanks Alan

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Redcollector
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LearnAll profile image
LearnAll

Many of us have been shocked to discover metastatic prostate cancer. I am one of those.

I was walking and jogging 5 miles a day...just 2 days before I was diagnosed with Met PCA . I suddenly developed in 2 -3 days severe urinary tract infection and PSA was done which came 830 to my utter surprise and shock. With Lupron and Zytiga, PSA came down to 2.3 in first 100 days. Strong antibiotics cleaned the urinary infection.

Good news is that metastasis to bones can be stopped and reversed with treatment as these mets shrink due to death and disability of cancer cells caused by meds/chemo etc.

People with metastatic pca live anywhere from 2 years to 20 years depending on many factors such as type of histological picture, Gleason Grade, presence or absence of visceral mets, other medical conditions, genetic factors ,type of cancer ..adenocarcinoma vs Neuroendocrine type.and so on.

Repeating PSA and scan is right first step.

Redcollector profile image
Redcollector in reply to LearnAll

Thanks for your positive reply.

How did they discover the bone mets, were you getting pain or was it routine?

My back seems to have got a lot worse in the last 3 weeks so am worried it’s spreading fast

Stay well

LearnAll profile image
LearnAll in reply to Redcollector

Its interesting. For UTI treatment, my primary Doctor admitted me to hospital. I was having burning urination and bladder spasms. She said I do not want to miss if you have an abscess and a CT scan of pelvis was done. Some suspicious lesions on bones were seen..prompting a scintillating bone scan...which showed many shining, lighted areas..that led to MRI same night ..confirming bone metastasis..

This was my journey from UTI to bone mets...just in one night while in hospital.

If you are too worried, get blood test measuring Serum Alkaline phosphatage and serum calcium...if they are high and rising..that will give you a rough idea how fast or slow the bone mets are forming. When bone is being eaten by cancer cells, calcium is released in the blood ...giving high serum calcium level. Alkaline phosphatage is an enzyme which indirectly measures speed of bone formation and bone loss. This enzyme if high means faster bone loss. With treatment, the level of this enzyme falls telling bone loss has stopped/slowed. Initially ,my ALP level was 440 ..it decreased to 92 within first 100 days. (upto 112 is considered normal level)

GP24 profile image
GP24

"have prostate cancer after it has sorrad to spine and anyone had PC with a very low psa"

This is very rare with low PSA. Just wait for the results of the bone scan, I think it is more likely that you have no prostate cancer.

Bebby1 profile image
Bebby1 in reply to GP24

My husband has Gleason 10

Extensive boney Mets and lymph

PSA has only ever been up to 34

Why is everybody so different ?

pilot52 profile image
pilot52 in reply to Bebby1

Hi, I am just a pilot and these guys have a lot of research background...However, I do go to premier treating facilities . MD Anderson and Duke....they both seem to concur that as a rule they do not get alarmed with PSA under 20 and T under 50. Of course they watch doubling time of PSA. That is a simple answer for a very difficult disease and I am sure other markers are involved...Your husband did get to 34. Gleason can be high and PSA not particularly and that is what I have all 12 cores Gleason 9 , the highest my PSA has been is 13.1 . Have a great Labor Day...Blue Skies a still Grounded Sky King

Bebby1 profile image
Bebby1 in reply to pilot52

Thanks for replying

Everybody Is different I have noted

This is such a great site

Makes me feel not so alone

Good luck to you

I wish you all the best

Just a pilot.... very humble

pilot52 profile image
pilot52 in reply to Bebby1

Hey J-O-H-N !!! did you read what Bebby1 says about the ole JP....humble!!!!

Please everyone have fun today....it is actually good for you....Blue Skies

Bebby1 profile image
Bebby1 in reply to pilot52

Blue skies

Can’t lose😉😉

GP24 profile image
GP24 in reply to Bebby1

"Why is everybody so different ?" Prostate cancer has a wide range of aggressiveness. Starts with Gleason 6 which lets you live for over 25 years and will usually not be lethal. Gleason 10 is the other end of the spectrum. It is unknown why some patients have a Gleason 6 and other patients a Gleason 10.

Bebby1 profile image
Bebby1 in reply to GP24

Thanks for replying

Information here is priceless

LearnAll profile image
LearnAll in reply to Bebby1

Bebby1...every ones prostate cancer is different . Some peoples cancer cells are still like prostate cells and churn out a lot of PSA because they can do it.

Other peoples cancer cells are very deformed, out of shape and malformed .. they release less PSA prostate cancers because they can not produce much PSA.

Another fact is that lower initial PSA generally indicate less advanced disease..

BUT, there is a rare type of very aggressive cancer which hardly produces any PSA

..like PSA showing 4 or less. That type of cancer is dangerous as it misleads patients and doctors.

PSA alone can not explain everything. .there are many other factors to fully understand a person's prostate cancer.

Bebby1 profile image
Bebby1 in reply to LearnAll

Thank you

I read constantly on this site about different types of PC

this has not been mentioned for us

Just that it is aggressive and widespread

I know the USA leads the world on APC and options

Hirsch profile image
Hirsch in reply to Bebby1

Different types of pca. Some types are not heavy psa secreters.

Bebby1 profile image
Bebby1 in reply to Hirsch

Thanks

I’m googling what I read from you guys

Kaliber profile image
Kaliber

I am one of those that suddenly discovered I have PCa , after it had spread to my spine. I was feeling quite ill for some time and started to have “ substantial “ pains in my lower back and especially my right hip bone. Had several bulges around my abdomen too. After a couple different scans and a biopsy my mets were so widespread that all my doctor could say was “ well, I don’t quite know what to say, except you have a LOT going on down there. “ X-rays show significant bone deformations in my pelvis and lower spine.

I didn’t have low psa, My psa was 1400 - 1600 and my bloodwork was marching off the bottom end of the green zones except for my alkaline phosphatase which was sky high.

Although you have some similarities to me, your experience seems quite different as well. With that low psa , seems like you’ll want some detailed work ups ... scans and blood panels to learn a lot more. Of course there are different kinds of PCa and different people experience it differently... close work with your medical team will help you come to the proper conclusion. And of course you can bounce stuff off the great and knowledgeable guys here in the group. It might not be PCa . Your pain management crew will likely be able to help make you quite comfortable and pain free if you are dx’ed with PCa.

Let’s all hope you don’t have PCa , but if you do, know that you are among friends here ... look around , we’re all Bozo’s on this buss ( Firesign Theatre) ... you got this.

Redcollector profile image
Redcollector in reply to Kaliber

I am interested in your bone deformities comment. In as much that going back to my scan the whole description said, ‘ no sinister bone lesions are seen. A small sclerotic lesion in the body of L2is taken to represent a benign bone island . There are marked degenerative disc changes in the lower thoracic spine with large right sided osteophytes. There are also large osteophytes at L2/3 and L3/L4 associated with some disc space narrowing, particularly at L2/L3’

I looked up the word osteophytes which is bony bumps that grow on bones around the spine, I guess this could be a deformity if sorts but I would like to think that the radiographer would be able to distinguish between something innocent and a cancerous growth.

Kaliber profile image
Kaliber in reply to Redcollector

Right before I was DX’ed I started feeling sharp pain in my right hip area and in my lower spine and thorax bones. After x-rays and scans, the radiologist said I had mets literally all over my body .. neck to the bones in my legs. One met in my Iliac crest area has caused bone growth deformations ... instead of being the smooth curve there it’s oddly shaped growths jutting off in a couple directions and a curly cue Bone growth in one place. Got similar things happening in the lower spine part of the pelvic bone and on what looked like to me to be the pointy part of one of my mid spinal bones that would be a point but instead has oddly shaped growth , visually different than the others . In the nuke uptake scan these places, along with places in my thorax bones and especially my right leg lit up the brightest of any spots. Sorry I don’t know / remember the technical terms for these. I can run my hand up and down my right leg and left legs and feel several prominent peanut to half walnut sized lumps about midway down ... the ones on my right leg can clearly be seen just looking at my lower leg.

There are a couple pages of descriptions of the mets I’ve seen but I don’t have a copy and the docs don’t seem to think I really need to focus on them all that much and don’t discuss them with me .... more about emphasizing the great bloodwork results and making sure Im comfortable. Half my my first visit with the Oncologist included introduction/ meeting my hospice nurse. That was last October, my first month of adt ( Lupron- Xtandi- Zometa) dropped my psa 1350 points and my end of the month bloodwork a day ago was my fourth month in a row with castration level T and <0.1 undetectable psa. My pain is mostly gone for now and what is left is low level and easily managed.

There are guys on here that know a whopping lot about this stuff , maybe they will read this and make comments on your more technical descriptions.

Best wishes

monte1111 profile image
monte1111 in reply to Kaliber

<0.1 is good. Got myself another 0.1 today. Looks like we will make another Christmas.

Kaliber profile image
Kaliber in reply to monte1111

Good for you guy ... good for both of us. Christmas would be nice for sure wouldn’t it ... hopefully well enough not to bum out the whole thing out for loved ones around us. Yayahahaha yayahahaha Funnie how the littlest things can become so important in life isn’t it ! Here’s hoping both of us can get lots more of those <0.1 results .

You’re still smelling the daisies and not pushing them up .... doesn’t get better than that for us PCa guys.

tom67inMA profile image
tom67inMA

My PSA went from 2 to 216 in 13 months. My cancer is of the rare and aggressive intraductal variety which doesn't put a lot of PSA until it's widespread. Have responded well to treatment, PSA now undetectable, scan still shows lots of spots but not the horror show the first one was.

LearnAll profile image
LearnAll

95% of prostate cancers are ADENOCARCINOMA type and are mild to moderately aggressive...Remaining 5% include more aggressive types such as Neuroendocrine, small cell, intraductal types. Even those 5% respond to treatment fairly well ...as in case of

last poster, tom67inMA.

Only way to know the type is by having prostate biopsy. Pathologist looks at the slides and determines type and also, assigns Gleason Grade.

Redcollector profile image
Redcollector

My psa was less than 2 for the previous four years but for some reason I didn’t get a psa test done this year. Last one was March 2018, as I said in my original post I had a scan in Oct 2018 which was where my sclerotic lesion was reported but as it said benign I thought that was ok. I wish now I had a psa in March this year as if it was sclerotic lesion is malignant maybe it would have shown a psa increase, clearly as I may have also said I have just had psa test and am awaiting results. Right now what is worrying me is how quickly the pain in my back has intensified in the last week is so.

Alan

dentaltwin profile image
dentaltwin

What was the purpose of your scan? I'm not clear as to whether you've had a PC diagnosis.

BAZZAD1953 profile image
BAZZAD1953

Hi there, insist your Scan is a NPMRI scan, this is the one especially to diagnose tumours in the prostate! I have my prostectetomy schedule in October this year. Also check any medications you are taking as they have a profound ability to reduce your PSA considerably.

Regards

Bazza

larry_dammit profile image
larry_dammit

Scans re only good with contrast, low PSA depends on if your taking Avadart, it will keep the PSA artificially low till to late. Weight loss is a important signal that something is going on. Have you had a complete blood panel ? May be time to see a oncologist. Never to early to start the battle with the monster 🙏🙏😡

dadzone43 profile image
dadzone43

Hope it is NOT what you fear.

GranPaSmurf profile image
GranPaSmurf

Yes. At the time of diagnosis I had 2 bone METS and extra capsular PC, invading the seminal vesical.

PSA 2.14.

Negative DRE 6 months previous.

rscic profile image
rscic in reply to GranPaSmurf

Many authorities think seminal vesicle invasion is where many metastasis begin because of this area's increased vascularity

rscic profile image
rscic

I had a friend with a usual 1 PSA that went to 3 who had prostate cancer .... Very good Doc to catch that. Isolated to Prostate & had Surgery only. That was in 2010 and he continues to be disease free.

Hirsch profile image
Hirsch

Have you been examined by a competent urologist? If not you should

elvismlv123 profile image
elvismlv123

Hi Allan,

I believe in PSA as a predictor of aggressive disease. There are some cancers that do not produce much PSA. PSA of 2 is supposed to be normal not low. Its what you would expect from a normally functioning prostate. At age 65 there is a tendency for PCa to occur. What I find curious is that you have an enlarged prostate and its not affecting your PSA number. If your prostate is large enough to cause urination issues then its large enough to drive a higher PSA. This speculation of mets to the bone and the back pain are unsubstantiated and fall into the background of normal age related issues.

Unexpected weight loss is a concern but there are so many variants that can cause this effect.

Your thyroid function could be off and that can cause rapid weight loss. To lose weight due to PCa is not mentioned very often. Only a biopsy can actually show the truth of the matter, You can do a scan 3T scan to identify hot spots.

The problem is your PSA is not suspicious for disease so it may not be covered by insurance unless doctor says so.

Psa highest was 4.25. Gleason 8, tumor outside the capsule, nerve bundle invaded and possible rectum invasion. Psa means nothing. I’m sure it was cancerous at 1 when I had my first biopsy and declared a calcium deposit. They missed. I wasn’t smart enough to keep checking and my docs didn’t say a word.

I’d keep pushing them. MRI first. Hospital if they want to do a biopsy and go somewhere that specializes in the prostate and cancer.

Hope it’s nothing.

monte1111 profile image
monte1111

Sounds like you are probably ok. Having it checked out is prudent.

Philly13 profile image
Philly13

I haven't read all the replies. I apologize if my comment is repetitive. I was diagnosed with Gleason 9 PC with a PSA of 2.5. My GP did a Digital Rectal Exam during an annual physical. He felt an irregular bump on my prostate, known as a nodule. Said it was probably nothing, because my PSA was so low, but recommended I see an expert. The urologist was pretty certain there was problem from the same type of finger exam. We scheduled a biopsy right away, and it was positive for aggressive disease. Between the biopsy and surgery, all scans, mri, etc. were negative for spread.

If it were me, I would have a biopsy done as soon as possible. Your symptoms warrant some further investigation. I would rather have short term discomfort from biopsy than the anxiety of worrying about something serious. If it is serious time to treatment is important. If it is nothing, then relaxing will be a lot easier.

Philly

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