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Whats Up Doc? - Now Confused!

Todd5566
Posts: 5
Joined: Aug 2019

Hi - I'm new here and what a pleasant surprise to find this forum about 2 weeks ago. I truly wish I would have discovered this valuable information much much earlier as it would of perhaps steered me in the right direction. 

Here are the facts:

I'm 60 years old.

About 10 years ago I was diagnosed with BHP -Just before diagnosis my PSA was at 1.9

As timed pasted my PSA started to rise and when it was at 5.2 my doctor refered me to a urologist. The DRE was normal and he said I had a enlarged prospate.

Check up commenced yearly. About 8 years ago this is when my ED started. I mentioned this to my doctor and he told me this was normal. Now I wonder if this is normal or not?

So over the last 8 - 10 years = DRE normal with prospate  enlarging - still having ED - PSA values up and down between 6 - 7.5 but no higher than 7.5

Then in Feb 2019 my PSA rose to 9.8 and it was discovered that my prostate was 6 times the size of a normal size prostate. No wonder I had difficulty time emptying. Again, my DRE normal with a enlarged prostate (BHP)

Then at the end of April my urinate track system shut down due to a UTI (showed up in my urine) I literally had to crawl to the hospital to have a catheter put in to release the urine from my bladder.  Doc put me on Flomax and Cialis.

This both helped my urine flow and erections. About 2 weeks after the catheter event my PSA rose to 72 !!!! About 2 weeks after this another PSA test showed it dropped to 29. Then another 4 weeks passes and PSA still at 29 ...

Bone scan is negative. (this is good news) The doctor tells me I have no idea what is happening -- WHAT????

So today as I write we have ....BHP enlarged prospate 6 times the normal size - a PSA of 29 ----  a sore back since April -- and I'm totally confused!!!

So this is my question;

Since its BHP with enlarged prostate of 6 times the regular volume size, is a PSA 29 normal for this condition?

Why will my sore back not go away?

Should I have a biopsy done even though the doc said its only BHP? - 

Should I just skip the biopsy just tell the doc to remove the prostate completely before something else serious happens.

Another concern if a biopsy and or removal of the prostate is elected it will not happen until Nov or Dec this year. Maybe even as late as early 2020!!

So with this in mind due to my current condition could this prospate (if its cancer) spread to other places within the next 3 - 4 months?       

I'm sorry if this may sound a bit confusing but I blame it on the doctors that are confusing the hell out of me!

Any input would be greatly appreciated.

What do you guys think?

Steve1961
Posts: 250
Joined: Dec 2017

I hsve been thru the ringer myself....no biopsy yet ..really ...YOU need an MRI fusion type biopsy.   https://uihc.org/health-topics/mriultrasound-fusion-guided-biopsy-prostate-cancer .dump your doctor ..google where you can get and MRI done in your area and get it done fast ...I had a horrible urologist who did the opposite did biopsy after biopsy and blamed PSA on my enlarged prostate as well ...BUT he was Missuing the cancer each time ...MRI is the way to go ..I think it’s 80-90. % accurate in detecting cancer ..............or not hopefully it’s only the huge Prostate ..at least u will know fir sure and yes either way I would have it out .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Todd, you ask the question correctly: 'What do you guys think'?   We are not doctors or medical authorities, but men with insight from experience.

Ten years of prostate-related issues, some quite serious, and no biopsy, ever.  Unbelievable.  Well, believable, but I wish it were not so.  It is correct that serious BPH or BEP (the same thing) can elevate PSA, and yours has rolled around dramatically.  But I think that few urologists would have dragged out this process the way yours has.  I went to a urologist on my own when my PSA hit 4.1, after it had gone up about 1.0 annually for the second year in a row, and she ordered an immediate biopsy, which came back Stage II PCa (prostate cancer).  She is one of about 16 urologists at a teaching hospital.  Just comparing my case to yours.  In the medical realm, a prostate biopsy is relatively inexpensive and easy; I was at the doctor's office less than an hour, total time, and went home immediately afterward.  

I have had advanced Lymphoma (a disease wholly unrelated to PCa). Lymphoma often (not always) begins with palpable nodes in the neck.  Hence, people often first encounter doctors in an ENT office. Always, they perscribe antibiotics indefinitely, unwilling to even think "cancer."  I therefore have a saying that I use at the Lymphoma Board:  "Don't let an ENT antibiotic you to death."  That is, do not let them go to their stock-in-trade, ignoring real signs of lymphoma.  The same with urologists: do not be 'BPHed' to death.  

As a layman, I would get a new urologist today.  I read few guys here who have had a PSA of 30 and whose doctor has no interest in a biopsy.

Clevelandguy
Posts: 473
Joined: Jun 2015

Hi Todd,

If it was me and what I know now I would want an MRI to look for supicious areas in my Prostate.  If needed then a biopsy into those supicious areas to determine if it is just BPH or cancer, or both. A second opinion might be in order to see if your doctor is on the right track.  A rise from 9.8 to 29 is very alarming to me.

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Todd,

Welcome to the board. So far, you haven't been diagnosed with prostate cancer and I sincerely hope that all that prostate troubles are related to BPH. In any case, your story is not common and I think you better get the opinion from another urologist, the soonest.

You do not share much about what has been done along the 10 years with BPH. Apart from the negative DREs and the negative bone scan, what exams and image studies has been done to identify the enlargement (6x normal size) of the gland?

The PSA varies much away from normal ranges when BPH is involved but the continuous increasing graph seems to relate to cancer development. BPH shows typically a graph of sharp increases and sharp declines. I think this to be your present concern as now you are worried if cancer would have spread in 3-4 months. The fact is that only a biopsy can diagnose prostate cancer, which action you should take even if just for peace of mind. I would start with a MRI (as suggested by Steve and Dave above) and follow with the traditional ten/fourteen plate biopsy. Some doctors do the other way but the biopsy will leave blood marks/traces that would be identified by the MRI confusing results.
You can then decide what to do with the gland. But surgery is not a simple walk in the park to be chosen to treat BPH. It wouldn't free you from the troubles you have had, such as the urinary issues and ED, and it may accentuate then still more. Surely if cancer is found to be the culprit of all troubles and your case is diagnose as contained, then surgery may be your best option. You need to find out what is your present Clinical Stage.

Can you share some details of other health issues you have or had in the pass? How much do you weigh?

We all have gone through similar experiences. We all managed to survive and be well. You will do good too.

Best wishes,

VGama

Todd5566
Posts: 5
Joined: Aug 2019

Sorry for not replying sooner -- before I bring forth the Update - I like to thank all of you who have replied thus far.
To have shared your experiences is not only extremely helpful but gives me some direction in moving forward.

I like to fill in the blanks  -
I also had a Cystoscopy - all clear.
I also had a CT scan - no signs of any tumors either in the prostate or elsewhere.
I also had ultrasound - all clear
I also had a complete blood test - all indicators within normal range.

I weigh 176 Lbs and has been up or down by a 2 - 5 Lbs depending if i eat too much or too little.
I do not smoke ---
I eat heathly foods - no sugar!!! - ussually lots of vegatables , fruits and fish to take in some protien.
I walk daily - have not measured the exact distance - but I do move...
In general I'm healthy ---

NOW FOR THE UPDATE:
I decided to get a second opinion ===

He reviewed my history - the CT scan (told me no tumors anywhere) - and the blood work (PSA) values.

He does agree that the PSA of 29 is too high. He also took into consideration that recently my prostate has been through hell and back (visit from the catheter and the invasion of the cystascope) - and due to these visits it does raise the PSA levels - he also indicated that it takes time for the prostate to settle down from these visits.

He told me that a follow up PSA test is in order but more time needs to pass to get an accurate reading. He scheduled for a PSA test to be done at the end of Sept. He also told me that if the PSA level does not drop below 10 it is at that time other measures need to put in place.

At the time when I sitting there listening to him it sounded good and reasurring but then when I arrived home I started to think about what just happened !!

I thought OK it looks like the MAYBE cancer has not spread right?
If so, I'm happy about that - but what are the chances of any one of those MAYBE cancers cells escapes between now and the end of Sept - can this really happen?
Will I be totally screwed when it does?
Is there a treatment for this if it does?
Will I know that it has?
What would be the sysptoms to know for sure? (as you can tell my mind is racing)

Then I thought about removing a part of the prostate so I can empty my bladder more easily and then at the same time do a biopsy!
Has anyone had this done? (there is a special name for this proceedure but I forgot what it is) Because really if in Sept the PSA is still high then obviuously something needs to be done -

From your experiences it seems that an immediate BIOPSY would be the best course of action -

Now I'm thinking- geez should I get another a 3rd opinion? -
 
Can I order (MAKE) the doctor to give me a biopsy? - Or is there another way to get a biopsy done?

OMG I really need to think about this some more ---:(

Not sure but I hope my experience thus far will be helpfull to those with something similar ---

VascodaGama thank you so much for your encouranging words :)

Steve1961
Posts: 250
Joined: Dec 2017

 I would go for a third opinion I don’t know where you live I would go to a major institute.prostate being 6 times the norm  there could tumors in there so small they can’t be seen ..maybe you could find a dr willing to do maybe a24 or 30 core biopsy ...either something needs to be done with your prostate 

greenteaguy
Posts: 36
Joined: Feb 2019

My friend has almost exactly the same symptoms as you.  After his MRI and biopsy  both showed negative results his doctor recommended a (TURP).

https://www.mayoclinic.org/tests-procedures/turp/about/pac-20384880

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Todd,

I wonder why you are so sure that you got cancer. Surely the possibility is there but you haven't been diagnosed yet. I also want to inform you that PCa does not spread overnight. The present condition (what ever it may be) would not differ much in two to four months. You need to find firstly what is behind the trouble.

In any case, I disagree with the opinion of your new doctor. He says that "...  it takes time for the prostate to settle down from these visits ...", but the events occurred in April/June, which is way back, The present PSA should be considered your real level unless you are still on UTI drugs or have had sex, ride a bike or massaged the prostate the day before drawing blood for the test. According to what you describe above, you do not need to wait till the end of September to get another PSA and formulate a decision on your next step.

In your shoes I would contact the doctor and request him to have an MRI now followed by a biopsy the soonest. It will give you peace of mind even if the results are negative to cancer. The image study will provide targets for the biopsy which may be done with the 14 needle template due to the large prostate.

TURP referred above by Greenteaguy, is also a way to treat urinary issues in BPH cases. They do the work by dissecting (via the urethra) a portion of the inner flesh of the prostate, which tissues are then analyzed under the microscope. This is just a portion of the prostate so that it doesn't cover zones usually affected with cancer (areas closed to the shell). In such regard a biopsy provides a wider view of what is going on. TURP will alleviate the urine flow but the risk is high in damaging the sphincter which could cause permanent incontinence. All treatments involving the prostate have risks and side effects that may deteriorate the quality of life of the patient. You should get familiar with the possible consequences.

https://www.healthline.com/health/bph-surgery-complications

https://www.pcf.org/about-prostate-cancer/prostate-cancer-side-effects/

This is a difficult moment in your life. You are young and seem to be healthy. Let's try keeping things that way for as much longer as it is possible.

Best,

VGama

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Todd,

It seems most guys here who write about TURP do not have good results, but that is my subjective take on what I have seen over the years. And, TURP does not give a very good assessment of cancer in the gland, for the reasons Vasco shared.   As I stated above, your doctors seems peculiar in his reactions to me, outside the mainstream and Best practices.  I would get a differnt doctor.  My layman's view.

 

greenteaguy
Posts: 36
Joined: Feb 2019

Thank you for the information VG and MFH.  I am glad this topic came up because you offered good advice which I have passed on to my friend.  He is 72 years old and now because of the massive size of his prostate urinates via a tube and bag.  He has never driven a car and has ridden a bicycle by his estimate two hours per day for 35 years.  He has been a healthy drinker in the past as well.

He told me his primary care giver for this matter is his long time personal doctor, who is an internist.  This raised a red flag to me especially after he told me the doctor is pushing for the TURP.

Todd5566
Posts: 5
Joined: Aug 2019

Hi everyone - thank you so much for your insight - very helpful indeed.

Sorry i haven't been back sooner as I'm trying to convince these doctors to do more than just NOTHING as per say.

VGama I really like how you look at things - it really sounds you know your stuff - are you sure your not a Urologists?

I really like when you say that things will likely not get worse over the next two to four month which is reassuring...

Yes I wish i can convince these doctors to do a MRI and then a biopsy......but this is not is the case.

The doctor has now ordered a Biopsy (I believe 12 needles and not 14 needles - will this make much of a difference?) but no MRI - I was happy that at least a biopsy will be done but now wondering if this Biopsy will do any good or not without a MRI?

Hmmm Maybe i should of asked the doctor to do a MRI first? Now wondering if a 12 needle will be pointless or a waste of time without the MRI or maybe the Biopsy will be good enough?

Can someone please chime in on this?

I also mentioned to the doctor about doing a TURP afterwards but will read some posts here as it may not be a walk in the park---

In any event if its just a biopsy I will surely share my results here in order to help those with a similiar condition.  

Again. thank you so much for all the helpful comments thus far!

 

 

eonore
Posts: 53
Joined: Jun 2017

Hey Todd,

Your situation is very similar to what mine was.  Extremely enlarged prostate, urinary retention problems, Psa of 25.  My doctor ordered a standard ultrasound guided biopsy, which found cancer.  My treatment decision was easy,  surgery would get rid of the cancer and take care of my urinary problems without the need for a Turp.

If I had known anything at the time, I would have insisted on a MRI before the biopsy.  It was academic in my case, but MRI guided biopsies are the current gold standard.  Ask your doctor why he is not offering it, and if he will not do it or is not set up to do it, get yourself to a surgical oncologist at a cancer center of excellence.

Clevelandguy
Posts: 473
Joined: Jun 2015

Hi Todd,

The way I see it (and I’m no doctor) is to take pot shots at your Prostate or use an MRI to target suspicious areas.  My Urologist wanted to do the MRI first which makes logical sense to me. If someone is going to poke holes in my Prostate I want them to know where to poke and not just take random shots.

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3050
Joined: Nov 2010

Todd,

I am not a doctor. My comments are based on my 19 years of experience as a survivor and researches done along my journey. I agree with the opinions of the above posters, however, you should follow what seems better to you. You got the problem so that you should take time and collect and read the information available at various sources to get answers to your doubts.
In your shoes I would be more inquisitive regarding the recommendations of the doctor attending you.
Having a biopsy before an image study is also viable. The MRI can be done later if cancer is detected in the 12 cores.
in any case, the process used by this doctor for a patient with prostate issues and an increasing PSA, now at 29 ng/ml (and still delaying any intervention), is dubious to me. He is just following his standards that do not correspond to neither the urological association recommendations nor the NCCN guidelines.

At the American Urological Association they write this:

"Multiple approaches subsequent to a PSA test (e.g., urinary and serum biomarkers, imaging, risk calculators) are available for identifying men more likely to harbor a prostate cancer and/or one with an aggressive phenotype. The use of such tools can be considered in men with a suspicious PSA level to inform prostate biopsy decisions."

https://www.auanet.org/guidelines/prostate-cancer-early-detection-guideline

https://www.nccn.org/patients/guidelines/prostate/files/assets/common/downloads/files/prostate.pdf

Remenber that you are still at the screening stage.

Best,

VG

 

Todd5566
Posts: 5
Joined: Aug 2019

Hi Guys

I am so grateful for your feedback.

It sounds like performing an MRI followed up with a biopsy would be the best option.

The biopsy is scheduled and for me to go back to the doctor and ask him to change things to an MRI to then do Biopsy could take several weeks if not months - now i'm thinking if I were to wait a few months for a MRI and then something is found would the MRI tell how aggressive it is? or can this be determined only via a biopsy? 

Ok lets say the MRI picks up something then I have to wait again for several weeks to do a Biopsy - so this means MONTHS before this screening process is completed. I really do not want to wait MONTHS although granted the the MRI may tell were to poke. 

Dave 3+4;  yes to poke around the prostate at random spots may not be the best approach although if something is found I will insist that this puppy (prostate) is coming out - (I thought the TURP alone would solve this whole issue) or like VG mentioned can follow up with MRI - so its comforting to know that a biopsy is viable at this stage of the game.

Right now I'm praying that if I do have PC that it stays in the prostate and does not travel elsewhere until at least the biopsy is completed and then take it from there - perhaps I need to educate myself some more regarding this issue (yes the comments here are a goldmine) - VG thank you so much for the LINKS - 

As mentioned will let you know about the forthcoming results -

 

 

 

  

MK1965
Posts: 179
Joined: Jun 2016

Todd,

As someone who had experienced TURP ( urologist described it as mini TURP with mostly bladder neck resection to elevate symptoms of bladder neck obstruction) where I was incidentally diagnosed with prostate Ca from analyzing prostate chips removed in TURP.

At time of TURP, I was diagnosed with Gleson 6. Couple of months later I had TRUS biopsy which found Gleson 4+3 at different location. Turp chips were from transitional zone and biopsy found one core at left lateral.

I had TURP on 6/1/16 and RARP on 11/2/16 which was 5 months later after TURP. I was 51 y/o at time of both surgeries.

This combination TURP + RARP did not turned well in my recovery. It rendered me 100% impotent deslite agressive penile rehabilitation.

After TURP, I did not have any problems with erections, neither I did have any before. Was healthy and fit guy with no chronic conditions and was not on any meds. Never tried Cialis or Viagra before RARP, and never needed it. I was and still I am non smoker, non drinker, not overweight on that time ( gained 10# after RARP).

After RARP, never experienced any spontaneous sign of life in my penis, my orgasams were and still are nonexistent and worthless, I lost 2+ inches of length and some girth and ended up with penis what I had at 11 or 12 years old.

My frustration was higher and higher day after day in RARP aftermath and at 22 months post prostate removal, I had penile implant a year ago. With implant, I recovered some length but still 1 inch shorter then before RP.

As you can imagine, in my case, combination of this 2 procedures did not produce good results., but I am glad to be cancer free with <0.01 PSA. Life is going on...........

MK

 

 

lighterwood67's picture
lighterwood67
Posts: 222
Joined: Feb 2018

Well, you certainly got the right folks weighing in with a lot of years of personal experience.  We are not doctors, but are living test tubes as to what our medical technology has to launch on this cancer.  So, get a 3T MRI, first.  Ok, if suspicious areas show up.  Get a biopsy.  First things first.  MRI, then biopsy and then go from there.  Good luck on your journey.

ufknkidding
Posts: 42
Joined: Aug 2019

I agree with lighterwood67 that you have some very experienced men sharing their personal experience. We all understand our cases/situtions are different but our experiences can be very common.  It is never wrong to get a 2nd/3rd/4th opinion.  Don't ever feel regret in challenging a medical decision. Always look for the best care and providers available even if you have to drive hundreds of miles. This is YOUR health and you need to be an active participant in all decisions.  Some providers may get upset or argue your 30 minutes on google doesn't equate to 8+ years of college, but outcomes seem to be better when patients are engaged.  Changes in one's "normal" health status sure is a life changer.  Ironically, throughout our lives, we adjust to micro changes or slow changes to the point we may not even recognize there was a change because we adapted so well. Kind of like the story of the frog put in cold water which is brought slowly to boil (I would compare this to radiation therapy). But you put that frog in boiling hot water (I would compare this to prostatectomy) from the get go and it is going to have to adapt/adjust incredibly quickly.  Not that I'm calling you or me a frog but just making a point.  I was recently diagnosed with prostate cancer (3+4=7) and elected to have a prostatectomy.  If I only had 3+3=6 then I'd have done active surveillance for a while although aging and ability to heal would have also been a factor eventually.  If interested, you can find my story at https://csn.cancer.org/node/320408  I based my treatment plan on many factors including and definately one of the most important factors - my quality of life.  No matter what treatment plan you decide, there are going to be side effects and changes.  At your young age, you should recover reasonably well with your body kicking into gear to heal itself.  Probably not as quickly as a guy who is in his 50s like me or a guy who is in his 40s but generally you should heal well.  The struggle for me throughout diagnosis to present day is quality of life and moving forward in a systematic and healthy way. Daily I have to accept I am not who I was yesterday but today I am the new me and identify things I am capable of doing. I also talk to my loved ones daily to remind myself that part of my decision was to spend many more years with them.  Try to stay positive, share your frustrations with family/friends or on this discussion board, and work hard to keep strong mentally and have a good quality of life.  Try not to worry too much even though we all worried a lot.  I've moved out of the "what treatment if any should I chose" phase, to "I hope I made the right decision" phase, but that is just a mental thing I have to work through daily when/if it sparks.  You are doing a great job seeking education and experience.  I can't over emphasize the importance of doing your home work on your treatment hospital and medical team.  Enjoy today and do something positive for somebody which will help take your mind off of the worries for a brief moment.  Best wishes.

Todd5566
Posts: 5
Joined: Aug 2019

Hi Guys;

I just checked back in and so much valuable information (based on own personal experiences) while I was away and I completely agree that  our  personal experiences does more good rather than based on some random studies in the lab with rat as such. 

Thank you for everyone's input --- :)

I now want to share my final results - if you go to the top on my original post its truly off the wall scary to say the least. And scared I was indeed up to the point I had my biopsy - the biopsy came back as NEG for all areas involved - this is very good news and feel relieved although i'm still a bit scepticle as no MRI was done - Doc will follow up in 6 months from now - i think if the numbers are still of the charts by then, I will then insist on a MRI as what else am I suppose to do?  

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Your results are the best possible, Todd.  I know it has to be a relief.

Without wanting to be a killjoy, be aware that false negatives in PCa biopsies is not uncommon.  Not the norm, but not uncommon.   Your doc is wise to have another scheduled in six months.   I differ from many, or perhaps most here regarding this, but I would say again that an MRI is likely irrelevant in your case.  If you have any PCa, it is too small to be readily encountered in a 12 core biopsy, which also means it is far too small to be detected on an MRI.

Do the repeat in six months and hope for the best.   And relax and give thanks in the mean time,

max

Guber4
Posts: 6
Joined: Feb 2017

simple prostatectomy is what they do to relieve the symtoms of enlarged prostate.

i had friend with large proatate that had this done and he is overjoyed with outcome

might be something to discuss with your doc

Steve1961
Posts: 250
Joined: Dec 2017

 I don’t mean to be nosy but I must Chime in . You said you had a biopsy that came back negative. That’s good news. You also said that your prostrate is six times the regular size. How many core biopsy did you have they can do a 3040 it up to 80 core biopsy . Normal biopsy is 6 to 12 course. Since yours is six times the regular size maybe is 70 core biopsy  u should have that way you would know for sure if there is any cancer or not but again I don’t know how many cores they took out hopefully they took out alot 

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