2 Biopsies now, any advice please?

tonycue

Hi Guys, I have posted here before and had some very helpful friendly replies.....Been away for a while while awaiting results of biopsy and just wanted any advice, sage wisdom on my current situation. For those who don't know A bit of boring but necessary history. I live in the UK and am now 58 years of age, pretty fit, not overweight etc. Presented myself to the GP 12 years ago at 46 with increased urination during the day....DRE and PSA test, DRE negative PSA "normal" (Only found out recently that the reading was 1.2....I was so pleased at the time that I was "normal" I wasn't asking questions)....symptoms never really went away but learnt to live with them (after all I was "normal" right?)....fast forward 10 years now 56 and go back to doc with regular nighttime visits....DRE again neg but doc wants to refer me to the hospital as PSA 3.3 (cut off in UK for my age is 3) Stupidly I now realise I played the "bike riding, sex 24 hours ago" card and asked for a retest....this came back at 3.1...Doc could see my reticence about going to the uro so went along with my suggestion of PSA test every 6 months....cause in my warped mind how bad could .1 over the "safe" limit be? (See my schoolboy error there?).....So I go every 6 months for 3 more tests and every one is 3.1....So I get complacent and forget 1 visit so it's now 14 months and I visit the Doc and my 3.1 has miraculously elevated to 7.5 (Crap!). Now decide it's time to call in the experts....Doc does blood tests to rule out urinary infection (it isn't). Do lots of research Whilst waiting for hospital to get in touch and read of the free PSA test....NHS don't do this so find a private clinic for a new PSA test with "Free PSA".....This test came back at 4.3 PSA and a free PSA of 23%.(this is 2 weeks later)....Also had a consultation with private consultant from the clinic who are specialists in prostate health and problems. The consultant is a well known Professor of urology with an international reputation, many books and papers published, over a 1000 rp's under his belt etc....40 minute consultation and DRE and he tells me "No Cancer"....."Great" I thought and skipped off.....I was happy to call it a day and cancel the upcoming hospital appointments My wife, although pleased had other ideas and insisted I stick with the program. 
So since then I have been called to hospital, had a cystoscopy (Test clear)...a CT Urogram (also clear) and a 3T MRI (something on the scan...radiologist scores it a PIRADS 4...) The Uro tells me that whatever it is it is small and contained within the prostate....So 2 weeks later a 12 core TRUS biopsy.....1 week later result negative. In light of the PIRADS score they now want to do a 36 needle template biopsy....I have now had this today and will now be waiting over 2 weeks (bummer) for the result....basically I have a few questions for you knowledgeable guys out there who may have already been there or just know "stuff"... the last 6 -8 weeks I have had a sore right hip that has been getting progressively worse...I'm a keen walker and around 3 weeks ago went with my wife on a gentle 3 mile stroll and the hip was burning by the time I'd finished...freaked a bit went to GP and he pushed and prodded.....shrugged off my bone spread theory and said more likely bursitis, gave me some strong anti inflammatories which I took for 2 weeks and they've done nothing.....and now to cap it all a bit of grumbling back pain has attacked me over the last couple of weeks and now is very uncomfortable when sitting and laying down and can and does wake me up ....Am I now imagining stuff? The pain feels pretty real and will wake me up....so Hip and back pain....My PSA was taken again last week at a pre op assessment and is now 8.3....I was hoping in light of my lowered second (private clinic) reading of 4.3, it might have been lower not higher than the original 7.5 although the blood was taken only 4 and a half weeks after the TRUS biopsy so this may have a bearing...I should also add that my prostate has been measured on Ultrasound at 56cc or 70cc including seminal vesicles.....I have also been diagnosed in the last 2 months with an inguinal hernia (was even hoping that the hip/back pain could be attributable to that....Anybody?)......So this image is small and contained within the gland according to the MRI, and I know that a PSA under 10 isn't terrible, but I also know that a middling PSA does not mean low Gleason and the velocity scares me re bone spread.....Anybody have any insights while I'm waiting these interminable 18 days for the results?..Really sorry for the long winded Bio but just trying to give as much info as possible

thanks in advance guys.    Tony

VascodaGama

Shall we celebrate the negative result?

Hi Tony, Welcome back.

Your previous threads are these;

https://csn.cancer.org/node/304417

https://csn.cancer.org/node/304798

It is good to know about the negative biopsy. Probably the MRI finding is calculi as we commented before. Can you print here the contents of the biopsy report?

I do not think that the back pain is related to cancer. Maybe neurologic related. But it could be due to an internal infection, probably related to the biopsy. An MRI could identify any internal bleeding.

Best wishes for your next biopsy.

VG  

tonycue

Celebrate? With my glass half empty?

Hi VG 

knew I could rely on you to reply :-)

never thought to ask for a copy of the biopsy....it was negative is all I know

 unfortunately as you know TRUS biopsies throw up false negatives up to 33% of the time....hence the saturation biopsy.....plus the new aches and pains are freaking me out. Went to the GP as I had found a clinic to give me a bone scintagram, but needed a referral....GP pushed and prodded says "its bursitis" and gives me some strong prescription anti-inflammatories....which haven't worked....diagnosed with an inguinal hernia 2 months ago (the gods are toying with me).....Even begun to hope that the hip and back pain might be being referred from the hernia.....Clutching at straws.....Now seeing an osteopath...2 weeks in not a lot happening

 hope you're right about the MRI.....Fingers crossed

I have been trying to reply since yesterday, but kept getting error messages

Hope you are doing well?

 Regards. Tony

Max Former Hodgkins Stage 3

Random

Welcome back from me also, Tony.

A few thoughts:

1. Like Vasco, the hip-bone pain is almost definitely unrelated to prostate disease. To be advanced enough to cause bone pain, you would have to have advanced, metatstatic disease, and there is nothng in your posted results to suggest that.

2. Call and GET a copy of your biopsy. Any facility will get records to you; you've already paid for them, and need them for records.

3. Your PSA rise is significant.  I would go for the recommended biopsy, first opportunity.

4. Use paragraphs !

 

max

 

tonycue

Max

Hi Max,

Thanks for the welcome back

Sorry for the confusing post....I just write in a stream of consciousness

I didn't pay for the biopsy it was courtesy of the UK taxpayer.....Although in a roundabout way as a taxpayer I did pay for it....but here in the UK we don't have the freedom of movement to just go from doctor to doctor or hospital to hospital......not unless you're paying yourself....Unlike the USA very few people have private med insurance unless you're reasonably well off or it's a perk from the company you work for.

The result of the TRUS biopsy was negative so I never even thought to see the results...I am of course aware that TRUS biopsies can throw up false negatives a third of the time

The PSA spike has bothered me, but as the blood was drawn only 4 and a half weeks after the TRUS I am still hoping that that may be skewing the result

The hip and back pain are bothering me as they have come on recently and I am not a big believer in coincidences

I have already had the saturation biopsy on Saturday Hence the title of my post.....Now have to wait for 2 weeks for the results.

I think I preferred your old avatar pic....Or are you Jack Nicholson writing under a Nom de Plume 

hopeful and optimistic

aches and pains

As a patient with back and referred leg pain, I see a pain management doc who is an excellent diagnostician. I suggest that you find  a " pain doc" or a   Orthopedic surgeon to manage your case.

 

As an aside for the future.

 

There are 3 dimensional biopsy machines that lock into an MRI that are able to target the

suspicious lesions that are found in the MRI to see if they are cancerous......one such machine is

 manufactued by artemis....there are also other manufacturers......the advantage is that less cores are taken at the biopsy while being more effective that a random biopsy.

Max Former Hodgkins Stage 3

tonycue said:

Max

Hi Max,

Thanks for the welcome back

Sorry for the confusing post....I just write in a stream of consciousness

I didn't pay for the biopsy it was courtesy of the UK taxpayer.....Although in a roundabout way as a taxpayer I did pay for it....but here in the UK we don't have the freedom of movement to just go from doctor to doctor or hospital to hospital......not unless you're paying yourself....Unlike the USA very few people have private med insurance unless you're reasonably well off or it's a perk from the company you work for.

The result of the TRUS biopsy was negative so I never even thought to see the results...I am of course aware that TRUS biopsies can throw up false negatives a third of the time

The PSA spike has bothered me, but as the blood was drawn only 4 and a half weeks after the TRUS I am still hoping that that may be skewing the result

The hip and back pain are bothering me as they have come on recently and I am not a big believer in coincidences

I have already had the saturation biopsy on Saturday Hence the title of my post.....Now have to wait for 2 weeks for the results.

I think I preferred your old avatar pic....Or are you Jack Nicholson writing under a Nom de Plume 

Yea

Tony,

Well, I do live in a cuckoo's nest.

Orthopedic pain:  I broke my back at T-9 in a compression fracture, almost tore off my left leg -- femur apart mid-thigh, and broken again in the femoral neck, just below the hip socket.  Because my hip was put togeter with surgical wire, I developed ossification: Bone mass growing off the hip into soft tissue. My knee cap was found in my pants leg.

Broke both scapulars, 13 ribs.   Secondary to my back fracture, I have two totally collaped disks, trauma-induced scoliosis, and a trauma-induced kyphotic deformity of the spine. My spinal xrays look like a pretzel. Spinal surgeons have said they would not touch my back. Three top-flite chiropractors have told me they would not work on me.

Every injury is inoperable.   What do I do ? Ignore it.  I just today raked my front yard, been fixing fences today, other outside labor, before I go back to work tomorrow.  I have over 20 surgical incisions; I cannot keep track of how many.

If I paid it any attention, I would not be able to walk or move.  My advicer: Forget about it.

max

Old Salt

Not an MD

Tony,

I hope that the second (saturation) biopsy will be negative as well. If so, I would ascribe the higher PSA value to prostititis. This latter problem is difficult to cure and the antibiotic may not have been (fully) effective.

Just a thought from  a guy who hasn't been to med school...

tonycue

Thank you guys for replying,

Max, I hear what you're saying, "life's a ****" just "suck it up" and get on with it....your back and joint problems sound horrendous....I'm not usually one for self pity....I'm a firm believer in "physician heal thyself", I hate taking medication and try to avoid  Doctors wherever possible, but this sudden onset hip and back pain is worrying the crap out of me....These are not pre-existing conditions, these are brand new. I had the biopsy Saturday and yesterday decided to get out in the garden and do some work to take my mind off of other more negative thoughts, within 10 minutes I had to stop as I felt nauseous.....Spent the rest of the day with terrible back pain in the kidney area, My wife rang the doc yesterday evening  and I have an appointment this morning....My mind is constantly conjuring up secondary spinal tumours or bony metastasis....Before all of this prostate "nonsense" I would have just thought "bad back" (although I have never had back pain like this before and have done nothing to  achieve it....along with the hip pain) hence my concern.

Hopeful, see above....plus I am trying to be pro-active, have had 2 appts with an osteopath who has pushed and pulled me around, thus far the pain is no better...back pain has gotten worse.

As for the 3D biopsy machine, I don't even know if we have them here in this backward country....I would be quite prepared to pay for one....Even the 36-40 needles I've just had are basically "blind" The NHS have their protocols and obviously start at the cheap end, only upping the price ante if necessary

Old Salt, no one wants this second biopsy to be negative more than me, but now they've raised this spectre I don't even know if I'll believe them....got to wait another 2 weeks for the results....thanks for your posts guys

regards Tony

 

 

hopeful and optimistic

tonycue said:

Thank you guys for replying,

Max, I hear what you're saying, "life's a ****" just "suck it up" and get on with it....your back and joint problems sound horrendous....I'm not usually one for self pity....I'm a firm believer in "physician heal thyself", I hate taking medication and try to avoid  Doctors wherever possible, but this sudden onset hip and back pain is worrying the crap out of me....These are not pre-existing conditions, these are brand new. I had the biopsy Saturday and yesterday decided to get out in the garden and do some work to take my mind off of other more negative thoughts, within 10 minutes I had to stop as I felt nauseous.....Spent the rest of the day with terrible back pain in the kidney area, My wife rang the doc yesterday evening  and I have an appointment this morning....My mind is constantly conjuring up secondary spinal tumours or bony metastasis....Before all of this prostate "nonsense" I would have just thought "bad back" (although I have never had back pain like this before and have done nothing to  achieve it....along with the hip pain) hence my concern.

Hopeful, see above....plus I am trying to be pro-active, have had 2 appts with an osteopath who has pushed and pulled me around, thus far the pain is no better...back pain has gotten worse.

As for the 3D biopsy machine, I don't even know if we have them here in this backward country....I would be quite prepared to pay for one....Even the 36-40 needles I've just had are basically "blind" The NHS have their protocols and obviously start at the cheap end, only upping the price ante if necessary

Old Salt, no one wants this second biopsy to be negative more than me, but now they've raised this spectre I don't even know if I'll believe them....got to wait another 2 weeks for the results....thanks for your posts guys

regards Tony

 

 

pain worse in back

....would think that your ostepath needs to stop what she is doing.

I wonder did you have any xrays or MRI?

tonycue

Back Pain

Hi Hopeful,

Saw my GP yesterday, in light of my bad back (2 days after the big biopsy)...Took a urine sample in but that was OK (in case I'd picked up an infection). She seems to think that my fears of secondary tumours and bone metastasis are unfounded (the downside of an active imagination and trawling PCa websites and forums)....She seems to think that I should keep up with the osteopathy (If something was to break I suppose I'd be proved right )

As for tests...Thus far I've had a cystoscopy (clear) A CT urogram (Clear)....but the 3T MRI came up with a "Small apex lesion" that a radiologist has decided is a PIRADS 4 hence the 2 biopsies...and hence the sweating....I have come to the conclusion that I am not the kind of guy you'd want to share a foxhole with

  Regards   Tony

hopeful and optimistic

tonycue said:

Back Pain

Hi Hopeful,

Saw my GP yesterday, in light of my bad back (2 days after the big biopsy)...Took a urine sample in but that was OK (in case I'd picked up an infection). She seems to think that my fears of secondary tumours and bone metastasis are unfounded (the downside of an active imagination and trawling PCa websites and forums)....She seems to think that I should keep up with the osteopathy (If something was to break I suppose I'd be proved right )

As for tests...Thus far I've had a cystoscopy (clear) A CT urogram (Clear)....but the 3T MRI came up with a "Small apex lesion" that a radiologist has decided is a PIRADS 4 hence the 2 biopsies...and hence the sweating....I have come to the conclusion that I am not the kind of guy you'd want to share a foxhole with

  Regards   Tony

back pain

I don't think that I was clear in my post.

I'm saying that the back pain is not due to PCa.

If you are experiencing pain from whatever the ostepath is doing, it needs to stop......treatment should not increase pain

I'm also suggesting an x ray or mri for the back, not the prostate

By the way, I wonder, if the pain you feel is from pressure on your sciatic nerve during the biopsy...just guessing.

 

tonycue

Back pain

Hi H&O

Thanks for your post, in this thread and in the other thread regarding MRI scans....you were perfectly clear, I've now had 2 Doctors (my own this week and the head of the practice 4 weeks ago) who have told me that they don't think that my aches and pains are cancer related....plus many people on this forum.....I'm almost starting to believe it myself :-)

I don't think that anything the Osteo is doing is adding to my aches and pains I am either exaggerating the pain in my fevered imagination or as I have written in an earlier thread I have in the last 2 months been diagnosed with an inguinal hernia (Getting old is great eh?) and I have read that "sometimes" pain can be referred from a hernia to the back and hips as well as the places one might expect, abdomen, groin etc. (Clutching at straws me?)....the back pain could be being caused by the fact that I seem to spend 6 hours a day at the laptop googling cancer.....That's not going to help a guys back

Ultimately if the back/hip pain refuses to budge then I will definitely go for more tests as the discomfort I'm in is a constant reminder of my mortality ....I have not read of anything that would suppose that back pain can come after a biopsy, anything is possible I expect.....Having 40 needles poked into ones rear end must have some undesired effects

As ever thanks for trying to talk me off the ledge

 Tony

VascodaGama

Talking me off the ledge

Tony,

I like your sence of humor and the wording you use in your posts. Just memories.

Do not be "alarmed" if many here insist in keeping you off the ledge. Something that took me to be a member in this CSN forum back in 2010 was the state of brotherhood among the survivors (if we can term it that way). We all want to provide comfort to each other and be of help to all without any commercial interest. The union that puts us together reaches levels of comradeship (as buddies or pals). We do it keeping a certain level of respect to the other and welcome all that posts their stories and comments with the same intent. In the end we all learn and benefit from the experiences of the others.

Soon you will receive the results of the saturated biopsy. I hope it comes negative to cancer and that such term becomes the final diagnosis, but without a positive core in hand your previous PI RADS classification may turn your case into something not comfortable to you and the doctors. In fact I wonder if this 36 added needles were pocked with the intent of saving-face of the radiologist that classified you grade 4 from the image study. I am alerting on the matter even prior to the results because of such a possibility. A positive result would relief many people, but I hope that any negative leads all to forget about the foggy PI-RADS and try finding explanations for the high PSA in view of the benign status.
Hyperplasia and calculi plays a role in the matter. The biopsy should reveal the real composition of those spots detected by the MRI.

Unfortunately, many guys are "moved" into repeated biopsies because of constant increases of the PSA plus positive image studies in the presence of negative biopsies (not to be compared with AS treatments). This has been the "daily bread" of those biopsy "factories" whose experiences in guided image exams are behind the success of the PI=RADS system and its team of players.

I recommend you to reread our exchanged posts in your other threads.

Best wishes,

VG

tonycue

Back on the ledge

Hi Vasco,

I like the thought that the NHS are giving me minor surgery to save face for one of their radiologists.....I hope that you're right :-)

When the nurse made my appointment for my first biopsy I actually said to her, but how can we be sure that the biopsy will find this "small" lesion in my larger than average prostate with 12 needles......Her answer was "with the MRI scan to go on he will know exactly where to look".....as Homer Simpson would say "DOH"

  As ever thanks to you and the other guys here for mopping my brow

       Regards     Tony