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Nervous Introduction

Hellostone
Posts: 22
Joined: Jan 2020

Hello, I am a fairly frightened 53-year-old.  Generally healthy and no family history, but I had a routine physical with my GP this fall (after no doc appointments for several years...); he ordered standard blood work that included a PSA test--which returned a result of 12.3.  Referral to a urologist (for whom the wait for an appointment was almost 2 months) who ordered a confirmatory PSA test -- the result of which was 13.3.  To my knowledge, those are the only PSA tests I've ever had.

After the second PSA test, the urologist scheduled an MRI prior to biopsy, and the mpMRI was done last Friday.  I have a follow-up meeting with the urologiest later this week -- but I'm naturally reading the report that I accessed online.  

 The online report indicates one Pirads 4 lesion in the left posteromedial and posterolateral mid gland peripheral zone.  Sizewise, it says the lesion is 9x9x10mm, and in a 23cc prostate, that sounds sizable to me.  For T2 signal, it says Focal moderately T2 hypointense.  For DWI, it says Markedly ADC dark, DWI hyperintense.  For Focal early enhancement, it says Present.  Otherwise, to my eye, the report doesn't seem to indicate any issues with adjacent structures; for extraprostatic extension, it says Not seen.  No other lesions noted.

 So obviously I'll be enjoying a biopsy soon.  But meantime, with those PSA numbers and that Pirads 4 MRI report, is there anything you guys would recommend I start thinking about in terms of questions, expectations, etc?  Should I be mentally preparing for a more aggressive diagnosis?  I'm already reading through the Walsh Surving Prostate Cancer book and Scholz's Key to Prostate Cancer (where I'm wondering what stage of blue I'll be).  Until recently, I knew next to nothing about PCa, other than the fact that Arnold Palmer had it.  

ETA:  For instance, are there any other books/resources you'd recommend?

 

Thanks

 

IndyJoe
Posts: 15
Joined: Nov 2019

Hi there,

I want to say hello and wish you well going forward.  There are so many great guys on this forum that give just excellent advice.  I'm sure you will be finding this out soon enough.  My advice is definitely focus on reading / researching info from highly credible sources and avoid the not so credible ones.  One source that I have found that I go back to a lot is the Prostrate Cancer Patient Guide put out by pcf.org (link below).  It's a great source of info with a lot of good detailed content.  Hang in there my friend.  Like you, I was in the exact same boat in Oct and fast forward to today, and I am post treatment (radical prostatectomy) and doing well with a very good outlook....this after clocking a PSA of 32.  I was told I would start to feel much better after getting my team of docs in place and learning more about my specific staging along with the treatment plan.  They were right.  I am very thankful for the guys out here that I would occasionally consult with.  They are the best.   

https://www.pcf.org/guide/prostate-cancer-patient-guide/

Take Care.....Joe - Indy

Hellostone
Posts: 22
Joined: Jan 2020

Thanks IndyJoe. Really appreciate your post and gladdened to hear it's going well for you!

guitarhillbilly
Posts: 1
Joined: Jan 2020

What is the normal prostate density?

"The normal prostate volume is 15 to 30 cc. Men with prostate volume larger than 30 cc are more likely to be diagnosed with BPH or prostate cancer. ""Prostate Volume and Density" is also a practical medical calculator to calculate prostate density. Prostate density is prostate specific antigen (PSA) divided by prostate volume."


"A high PSA density means that a relatively small volume of prostate tissue is making a lot of PSA, while a low PSA density means that a large volume of prostate tissue is making relatively little PSA."

My UR zeroed in on my Prostate density after receiving my MRI results. He recommended a biopsy at that time but I waited another 11 months before having the biopsy. My UR was spot on in his assessment of my Prostate density. The Lab results were T2a and Gleason = 8.
My prostate was 22 cc at the time of the MRI.

Please note that the Density Number is also very important in the diagnosis of PC. In my case it was 6.9 / 22 = .313

My PSA velocity is why all the testing was generated in the first place.

Until my UR explained this to me I had not seen or heard about this measurement. Most talk is around Total PSA Numbers and PSA Velocity. 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3289697/pdf/cuaj-1-46.pdf

Tech70
Posts: 62
Joined: Nov 2017

First of all, until you receive your biopsy results, there really is no informaton to base any decisions on.  In the interim, as suggested above, read all you can about prostate cancer and treatments.

As far as your prostate size, 23 CC is pretty darn small.  Mine is over 80 cc with accompanying BPH issues.

Don't fret over the biopsy.  If the urologist is skilled, it should be nearly pain free.  I have had 3 and none caused any discomfort.  I found my 2 hour MRI to be much more stressful.

Good luck going forward.

Josephg
Posts: 215
Joined: Jan 2013

Welcome to the Forum that nobody wants to join.  That being said, you are in a GREAT place.  Folks here freely share their personal PCa experiences, as well as give layperson suggestions, based upon their own research and personal experiences.  None of us are doctors or related medical professionals, so we cannot, and will not, give medical advice or medical recommendations in any certified or authoritative manner.

As Tech70 stated, there is really nothing that you can do related to future treatment planning at this time, until you receive the results of your upcoming biopsy.  The good news is that your completed MRI will help direct the physician to sample the specific areas of the prostate in question, as identified by the MRI.  That should help reduce the possibility of false negatives, and provide a more accurate and complete assessment of your prostate's current state.  Only a biopsy can identify and comfirm the presence of PCa, so at this point, while there may be circumstancial evidence suggesting the presence od PCa, you do not have it for sure, until the biopsy results are in.

A report, including a Gleason score scaling, will be assembled, once the results of the biopsy are analyzed.  You will want to request a complete report of your biopsy, and if you are willing to share it on this Forum, members will chime in with their thoughts and perspectives, and I believe that you will find this quite valuable to you.  Also, make sure that you will be able to access the specimen slides, as you may want to have those slides sent to a world renowned medical institution, such as Johns Hopkins, for a second opinion (~$200).

In the meantime, do your research on PCa, what it is, and its potential treatment options and outcomes, and based upon your research, begin to assemble a preliminary list of questions that you will want to review and discuss with your physician, when you visit them to discuss the results of the biopsy.  It is understood, that you will subsequently have many more targeted questions, particularly in terms of treatment options and outcomes, once you have been advised of the biopsy results.

In the meantime, and I know that this is MUCH easier said than done, try to remain calm and collected, and don't let fear and/or your emotions of the unknown, negatively impact your life and relationships any more that humanly possible.

PCa is potentially beatable, and even if the outcome after treatments does not result in a cure, you can still enjoy many, many years of quality life.

I wish you the best of outcomes on your PCa journey, and do not hesitate to ask questions on this Forum.  This is your first post, so please use this same post for future questions, so that your story is located in one place on this Forum.

Hellostone
Posts: 22
Joined: Jan 2020

Joseph, many thanks for your thoughtful reply; I really (really) appreciate it.  I am trying to keep a calm, restful frame of mind, but today hasn't been a model of that -- at least, since I caculated my PSA/prostate density this afternoon and realized it was over 50%.  I'm hoping that's just another indicator that PCa is likely to be found on biopsy, and that it's doesn't also indicate a greater likelihood that the PCa will be more aggressive -- which of course means that that is exactly what my mind keeps thinking... 

IndyJoe, thanks again.  That pcf guide is a great resource.

Tech70, thanks.  Trying not to fret, but fretting is what I (currently) do best!  

lighterwood67's picture
lighterwood67
Posts: 252
Joined: Feb 2018

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”


― Susan Sontag, Illness as Metaphor

 

Good luck on your journey.  

Hellostone
Posts: 22
Joined: Jan 2020

LW, that's brilliant, thank you!

lighterwood67's picture
lighterwood67
Posts: 252
Joined: Feb 2018

Keep reading.  The definitive test for PC is a biopsy.  Imaging and an elevated PSA do not always equal PC.  However, they do raise suspicion and should be addressed.  For now, good luck on your journey.

lighterwood67's picture
lighterwood67
Posts: 252
Joined: Feb 2018

Keep reading.  The definitive test for PC is a biopsy.  Imaging and an elevated PSA do not always equal PC.  However, they do raise suspicion and should be addressed.  For now, good luck on your journey.

Hellostone
Posts: 22
Joined: Jan 2020

Thanks LW!

Gforce
Posts: 21
Joined: Jan 2020

Like you I am a young 53 year old in good shape. I got my first PSA every and it was 17. I went and got a biopsy. Yep, positive for prostate cancer both sides. 12 out of 12 samples positive. Most 6 on Gleason but 1 was a 3+4 so they tagged me as a 7. I went crazy reading everything about prostate cancer and treatement. I got a bone scan (negative), Tesela MRI (cancer containted). Then had to decide on treatment path. I have chosen Proton Therapy vs surgery. If I went the surgery route I was going to lose sexual function for sure so I went Proton. I just had my markers placed and Space Orr gel inserted this week. Start treatment end of this month. 

If you maintain a healthy weight, eat right, and the cancer is contained, you will live a long life. It scares the hell out of you which is understandable. Just another problem to deal with and you will get through it. 

Hellostone
Posts: 22
Joined: Jan 2020

Gforce, I really appreciate your post, given how similar our age & PSA numbers are!  That's great that you mostly scored at G6 even if the conclusion was G7 for that one bad core.  Here's hoping that the PT goes well for you!!  And thank you again for your calming words!

For myself, I met with my uro this morning and was told that a MRI-guided fusion biospy would not be possible for 3 months or so due to lack of hospital room availability, both locally and regionally.  (I would've thought that Boston would have plenty of capacity for this given the many great hospitals around here...)  But the uro said that he could do the biopsy in his office next week, without the software mapping of the MRI slides, but with his knowledge of where the suspect lesion is.  He assured me that he would not "miss" the lesion spotted by the MRI, since my prostate is small and the lesion is good sized (1 cm square); he said it would have been less of a sure thing if the lesion was smaller and my prostate bigger., but mine would be more of a slam dunk (those were not his words but it was clearly his implication).  He indicated he thought I could wait 3 months for fully guided biopsy if I wanted to, but I had no interest in that long a delay, so we booked his biopsy next week.  

I'm wondering if that choice and rationale sounds sensible to you all?  Or if the software-guided fusion biopsy is worth waiting for??

Gforce
Posts: 21
Joined: Jan 2020

Prostate cancer is so slow growing that you can feel pretty confident in waiting to make decisions. One study found that there was no difference in outcomes after waiting 6 months to make a decision on a treatment plan. My biopsy was done in the Dr. office. I was nervous regarding the pain as I had never been poked in that area before. After numbing the prostate, it was no big deal. Even afterwards just a little sore that day, but next day all was fine. I was diagnossed in July 2019 and wanted to wait till after all holidays to start treatment. My Dr. suggested Lupron as a preventative measure until treatment. I started Lupron in October 2019. The only real side effect for me are the hot flashes. The Lupron lowered my PSA to 2.7 as the cancer cells die for lack of testostorone. I am looking forward to being on the other side come March this year. I have a great summer ahead of me on the water with friends. Life is good! Tough times come and go but tough people stay around for ever. 

PhotoCraig
Posts: 2
Joined: Jan 2020

Welcome... not that you wanted to join but welcome.  A lot of good advice and suggestions here and in the other posts  ACS site has great information as does the Prostate Cancer Foundation.  In your hopefully extensive research you will also come across sites such as the Urology Association which are written for doctors but which still are useful reading.  The good news is there is a ton of information out there and you have lots of time to get smart.  The bad news is you are not a doctor and compiling it is hard.  Lots of information.  Lots of informed opinions online.  I think what is most important is to find a physician you trust and who you can work with.  I live near a univesity medical center which has a ranked urology program.  The department chair does all the prostate and bladder cancer cases himself.  And he is probably the best doctor I have been treated by over the years.  If you don't have that level of support consider finding it.  I would also suggest that if you can, find a couple of friends, collegues, new friends,who have gone through prostate cancer... they are out there.  Everything will be a new experience and it helps to have someone to bounce questions off of so you don't worry.  This feels a little differently than I expected.  How do I best deal wtih this.   

Good luck.  It sucks.  but it won't be the end of the world or of life as you know it and to a certain extent it hopefully restores some of ones faint in the goodness of friends and the skill of the medical profession. 

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

Your doctor is suggesting the traditional TRUS (Transrectal Ultrasound) guided prostate biopsy, probably with a template of 12 needles, which usually is enough to identify the status of the prostate. The MRI guided fusion biopsy is usually performed when the traditional one failed to locate something in spite of a continuous increasing PSA. I believe that your doctor will consider the data from the mpMRI when directing the needles.

You may be worried for the reported Pirads 4 lesion but this is just a red-flag risen by the radiologist reading the image results, with no valid conclusion for cancer. The gland size of 23cc is also considered normal (mine was 27) and that does not constitute a reason for possible error. The baddy in your case is the reconfirmed high PSA 13.3 ng/ml (mine was 22.4) which is above the gray zone and that may not be judged for BPH because of the normal size of the prostate.
In any case, should the biopsy be positive, you shouldn't rush. Cancer doesn't spread overnight providing time to patients to educate and decide what to do next.

So far you haven't been diagnosed with prostate cancer. However, if interested on the subject you may choose a book from this link;

https://csn.cancer.org/node/311252

Best wishes,

VG

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

Hellostone,

Your PSA vector suggests that your biopsy will have some positive cores, but at this point, that is only a statistical liklihood.   My brother in the last year has followed a path very similiar to what you describe:  His first-ever PSA a year ago was 10.5, and a year later, just over 11.  His uro did an MRI guided 12-core biopsy, and every core was negative.  Not even any PIN cells.  And, his gland is normal in grams -- not enlarged.  His doc said that he was "shocked," as was I.   So, one never knows.  

You actually know very little at this point. It is after the biopsy that determinative data will be in hand: the Gleason score, and the volumne of involvement, as well as a few other findings, like whether perineural involvment was seen, etc.   Only after the biopsy will meaningful choices begin.

I suggest an excellent book for nubies:  Dr Peter Scardino's Prostate Book.   He is former Director of Surgery at Sloan Kettering CC in NYC, and is still a surgeon there today, regarded as one of the best in the world.   He presents ALL diagnoses, how to interpret them, and treatment choices.  He is NOT biased toward surgery, and discusses the pros and cons of all modalities: surgery, Active Survellance, and all forms of Radiation Therapy.   He then discusses all strategies for relapsed disease as well (Hormonal Therapy, Chemo).  The book is a regular stock item at Barnes and Noble and Amazon.

max

Hellostone
Posts: 22
Joined: Jan 2020

Belated thanks Max & VG et al.  We'll see what tomorrow's biopsy yields me.  Have confirmed it'll be a standard 12-sample TRUS biopsy, with additional cores taken in the Pirads 4 area spotted on mpMRI.

Meanwhile, I'm reading/collecting books -- so far, Walsh's Surviving Prostate Book, Scholz's Key to Prostate Cancer, Scardino's Prostate Book, McHugh's Decision, and Strum's Primer.  I was listening to Korda's Man to Man during my commute, but decided the narrative of his surgery (open surgery by Dr Walsh in the mid-90s, I think) and its aftereffects wasn't helping my current frame of mind....

Thank you 

L1917
Posts: 4
Joined: Jan 2020

new to the network.  Gleason 7 (4+3) any suggestions for surgeons who specialize in robotic prostatectomy in washington dc area? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

L1917

DaVinci surgery is today very common, undoubtedly the norm for R.P.s.  The best hospital in the DC area is Johns Hopkins, actually one of the best in the world.    You should have a pretty easy time finding an excellent surgeon in the area.

max

Hellostone
Posts: 22
Joined: Jan 2020

Just a quick follow up after getting my biopsy results this morning. The hypothetical is now real:  PCa diagnosis with one soft G7 (3+4) and five bad G7s (4+3). Several cores show 80-90% involvement, and presence of perineural invasion. Cat scan scheduled a few weeks from now. 

Damn, not the G6s I was hoping for, but I have No doubt who's going to win this battle.  

I guess my research now needs to get more focused.  

 

 

Gforce
Posts: 21
Joined: Jan 2020

Hey my man, I have now completed 2 of my 40 Proton treatments. The treatments are as billed: simple, painless, and I suspect effective. My initial diagnosis was all my cancer was contained. However, being on Lupron priior to my treatments, my PSA should have remained in the 2s or lower. My PSA as of yesterday was 5.5, and testostorone was up to 117 which should be under 50. My doctor now suspects my cancer grade is higher than 3+4 on my biopsey. I will be seeing a medical oncologist next week for other tests as they are concerned with lymp node invasion. No indication on my tesula MRI of any lymp involvement but now will wait and see. Good news is that the Proton beam can treat my lymp nodes if needed. Scary stuff but you are just along for the ride. No control. I had 2 cores 80%. You are going to beat this cancer and live a long life. 

Josephg
Posts: 215
Joined: Jan 2013

Hellostone, I'm sorry to read that your biopsy results show a Gleason staging higher than you were hoping for.  But as you stated, you now have a better idea regarding what your current situation is, and as such, now you can become more focused on reviewing available treatment options.

The one recommendation that I would make to you, as a lay person, is to find and engage an Oncologist, and, going forward, have the Oncoligist participate in your treatment options review and planning.  In my case, the one constant is that I have an Oncologist with me throughout my PCa journey. I consulted with her prior to surgery, and then later before my hormone and radiation therapies, and now today in a every-four-months visit for a watch/wait consultation mode, tracking my PSA changes.

We here in the Forum are with you, and I wish you the best of outcomes on your PCa journey.

Hellostone
Posts: 22
Joined: Jan 2020

Thanks guys. Meeting with a RO next week and a MO a few weeks from now. Wondering if the reported perineural invasion in several of the cores, coupled with the numerous 4+3s, will lead them to advocate for including some systemic treatment with some ADT...and whether surgery may be less preferred. I suppose the jury might be out until they do more body/pelvic scans. 

Gforce, hope the protons do their job!!  May I ask where you're having it done?

Gforce
Posts: 21
Joined: Jan 2020

www.floridaproton.org. UF Health is connected to the UF school of medicine. I am staying in one of their reccomended fully furnished apartments for $1600/mo. Apartment is one mile from the center. Jacksonville in the winter is not a bad place to be. The Lupron ADT is really no big deal if you stay active in the gym. The side effects are hot flashes, and a little weight gain around the middle. Hot flashes are not what you may think. No towel needed (LOL). Where are you located in this great big world. 

Grinder
Posts: 457
Joined: Mar 2017

Just to add to what the urologist said about prostate volume...

Besides  BPH and Prostate Cancer there is also acute and chronic prostatitis... usually caused by bacterial infection.

In my case, my prostate was 250cc at the biopsy and down to 197cc in the post-op report after surgery. But during prostatitis bouts it was even larger and would shut down all my "plumbing". In my case it was a recurring staph infection prostatitis with BPH and Prostate Cancer Gleason 6.

Just wanted to clear that up in case there was anyone with prostatitis... a urine culture will be able to tell whether symptoms are BPH or Prostatitis caused by infection.

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

Sorry to hear about the positive diagnosis. I wonder if any thing else is described in the report. The number of positive cores (5) and the high percentage found in each needle represent a voluminous cancer case which added to the perineural invasion finding lead to the possibility of existing extra prostatic extension.

This prognosis doesn't imply the need for ADT, but your doctor may see it not contained, suggesting that surgery may not be enough to assure total clean up. Radiation added to prostatectomy could be an option, however radiation alone applied as prime therapy can do the job. The CT may be seen as a protocol requirement in the diagnosis process. I do not think it will add more information than what was found in the previous mpMRI.

In my lay opinion, RT should be considered due to the voluminous grade 4 (aggressive) found in all the positive cores and high PSA. I wonder if you have done a DRE.

Second opinions will help you in formulating a final decision. You should also consider the quality of life in the future because you are young and will be embarking in a journey where the side effects from the treatment will affect you much.

Get your family involved in the decision.

Best wishes and luck in this difficult moment of your life.

VGama.

Hellostone
Posts: 22
Joined: Jan 2020

Thanks Vasco. I should go back over my report again later.  Though I recall that he oversampled the left side where the mpMRI had reported the lesion; think there were just 3 cores taken on the right side  I wonder if that imbalance affects the conclusions to be drawn re volume and positive sample number  

Neither my GP not the urologist had found anything of note on their DREs, other than the uro's comment that the prostate certainly didn't feel large. (Turned out to be just 23cc on MRI).  Does a relatively small prostate improve the odds of surgical or radiation success? Since maybe the margins between the gland and bladder/rectum are more spacious (more cushion)??

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

Can you copy the pathologist's report and paste it here. Typically the template bores at three regions in each lobe (2x3x2)=12, adding additional two needles to investigate MRI findings. What was yours?

Regarding sizes, I do not think that you got such a relatively small prostate as you comment. 23cc is absolutely a normal sized gland for a 53 years old. Older guys (above 60) have bigger glands (40cc) also considered normal sized. In any case, the size doesn't imply that surgery is better than radiation or vice versa. By hypothetic rule, surgery is recommended in contained cases as one assures a total clean up dissecting the whole gland. Cases where containment cannot be assured are usually moved to radiotherapy. Some doctors like the so called "... mother of all treatments... " and deliver combination therapies with protocols that include surgery plus radiation added to ADT. One should also to consider that surgeons (urologists) prefer to recommend surgery as much as radiotherapists recommend radiation. In the end, it is us who decide on the treatment and who assume full responsibility on the outcomes. We all sign an agreement before the treatment, relieving the hospital and physicians of any responsibility on the treatment.
Second opinions help in reaching that decision.

Please note that you are not alone. We all here have experienced the same difficulty in deciding on an option. We read a lot and listen to the doctors and once comfortable with something we decide. Surely that is the best we managed to get and surely it is the best choice. Be confident. You will get it too.

Best,

VG

 

Hellostone
Posts: 22
Joined: Jan 2020
Thanks Vaso.  Here's the pathology report.  Looks like I'm a lefty, with only three samples (all negative) taken on the right side.  I understand that Dana Farber pathology usually gives the slides their own review once they get them, so will see if anything changes. Meeting with an RO there tomorrow.  Thanks
 
 
HISTORY OF PRESENT ILLNESS: Patient underwent biopsies for PSA of 13.29 and an MRI that revealed a lesion on the left side. The biopsies as outlined below reveal a Gleason 7 cancer in majority of the biopsies on the left side.
 
 
1/24/2020 PROSTATE, NEEDLE BIOPSIES (A-I):
 
A. LT LAT BASE:            ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 50% OF TISSUE.
 
PERINEURAL INVASION IS PRESENT.
 
B. LT LAT MID:               ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 90% OF TISSUE.
 
PERINEURAL INVASION IS PRESENT.
 
C. LT LAT APEX:           ADENOCARCINOMA, GLEASON SCORE 3+4=7 (WHO GRADE GROUP 2), INVOLVING 80% OF TISSUE.
 
PERINEURAL INVASION IS PRESENT.
 
D. LT MED BASE:          ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), DISCONTINUOUSLY INVOLVING 20%, 40% OF TISSUE IN 2 OUT OF 2 CORES.
 
E. LT MED MID:             ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), INVOLVING 30% OF TISSUE IN 1 OUT OF 2 CORES.
 
F. LT MED APEX:          ADENOCARCINOMA, GLEASON SCORE 4+3=7 (WHO GRADE GROUP 3), DISCONTINUOUSLY INVOLVING 20% OF TISSUE.
 
G. RT LAT BASE:           NO MALIGNANCY IDENTIFIED.
 
H. RT LAT MID:              NO MALIGNANCY IDENTIFIED (FIBROMUSCULAR TISSUE ONLY).
 
I. RT LAT APEX:            NO MALIGNANCY IDENTIFIED (FIBROMUSCULAR TISSUE ONLY).
 
 
ADDITIONAL FINDINGS:    ATROPHIC GLANDULAR CHANGES
VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

You're moving in the right direction. I hope the RO helps you in understanding the situation. Take along a list of questions and discuss about anything even if that seems awkward to be done to a RO. For instance, about the particulars of your gland size in regards to type of treatment, and about the atrophic glandular changes identified by the pathologist. Inquire if the finding  affects judgement were it related to diffused or focal atrophy.

My comment on the biopsy report; I have counted 11 needless, two of them directional to the base/mid areas (Gr 4+3) closer to the center of the gland. It may relate to the area identified in the MRI, which corresponds to the same direction of the nerves bundle running above closer to the shell, also diagnosed with cancer from the base (under the bladder) to the apex (attached to the rectum).

It shows a voluminous cancer with the aggressive Gr 4. The right globe was disregarded, with just three cores, probably because of the MRI negative results. Though I think that it should have been treated equally with the 6 traditional needles, the doctor’s assumption in avoiding the full protocol creates ambiguity. It will be difficult to decide in preserving the right lobe whole or even in preserving the nerve bundle if surgery becomes an option.

In any case, the biopsy results are valid and proper to proceed with a conclusion. Now you need to receive a clinical stage from where to decide on a treatment.

Please let us know about the discussion with the RO.

Best wishes.

VG

 

Hellostone
Posts: 22
Joined: Jan 2020

Many thanks Vasco.  Meeting with the RO went well, though I think I may have felt more comfortable with his chief resident with whom we spent more time talking than with the RO near the end.  Reminded me a bit of the dentist popping in for a relatively brief look see after spending most of your appt with the hygenist -- obviously an imperfect analogy; the RO did much more than drop in for merely a moment.  But it has set me thinking about the twin goals of research and patient care at teaching hospitals, and whether both always go hand in hand.  Not in any way to implly criticism or dissatisfaction in my experience--I'm just remembering "great professors" in school who may have been better at research/publshing than teaching/relating to students.

Enough musing.  In a nutshell:  given my unfavorable intermediate risk status with plenty of 4+3, they would recommend EBRT + brachy + ADT (6 months).  We didn't get into specifics of how those would be sequenced (I basically forgot all my detailed questions).  Interestingly, they didn't seem that concerned about the perineural invasion on the path report.  They did emphasize that they thought ultimate cure rate would be similar for RT or surgery.  

I should acknowledge they had just received the reports and had not yet received the biopsy slides, which will get a fresh read by the time I meet with an MO in mid-February (and then Dr Kibel, chief uro surgeon, at the beginning of March).  

I intend to ask a few questions of the ROs by follow up email:

What would the specific sequencing of the EBRT, BT and ADT be?  Would ADT begin a few months before the RT begins?

Should they perform (and read) their own mpMRI to reconfirm no indications of EPE etc?  Ditto with regard to CT and bone scans.

Sorry this post is so scrambled; that's pretty much my brain these days.

Thanks -- if/when I'm better able to assemble more coherent questions, I'll likely aim to start with a new thread. Hoping that's ok.

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

Thanks for the update. Overall it seems that you got a good consultation at the RO department. Sorry to hear that the RO did not spend much time clarifying doubts. These guys cost money by the hour so they limit their timing with matters involving exclusively the treatment. They leave those diagnosing aspects to be discussed by the interim doctor (or should I say, the hygienist.) before the meeting. We need to be prepared in advance with some knowledge on the matter and start by inquiring before allowing them to give us the conclusion. I am surprised that you have started these meetings without a Clinical Stage that should have been established already by the urologist (?)

Regarding your meeting, I cannot fully understand the reason for the comment on the "similar cure rates" when, at the same time, they recommend an extensive combination treatment involving EBRT+Brachy+ADT, which usually is recommended to cases with extraprostatic extensions (not contained). We know that surgery would have lower rates of success if extraprostatic extensions were present. Probably they want to say that in contained cases, both therapies got similar rates, differing only in terms of the side effects.

Regarding the protocol and its sequential, it all depends on the type of brachy they are suggesting. Low Dose Brachy (LDB) done with seeds implants, is usually applied alone to treat contained cases, but it is also used as a RT booster applied adjuvant to the EBRT. High Dose Brachy (HDB) that involves insertion of temporary RT rods is usually recommended in risky cases. These usually are administered neoadjuvant followed by EBRT as a boost, but in some cases it becomes adjuvant to EBRT.

The intent of the combi is to focus and deliver the maximum radiation to the areas where cancer hides avoiding areas known to be usually free from cancer. The main protocol involves the whole gland (Brachy alone or EBRT+ Brachy) plus the area surrounding the gland (nerve bundle, seminal vessicles, etc) inclusive of the localized lymph nodes (EBRT alone). In a protocol involving seeds implants as prime therapy (+/- 15Gy), an adjuvant EBRT would be used to reinforce the dose of radiation delivered to the gland (20 to 35GY). In this respect CK (SBRT) substitutes well LDB or HDB in contained cases. Combination RT in EPE cases aim in distribuiting higher total doses (9oGy) to the various regions.

ADT in the context of the treatment serves to improve the effects of the radiation. In trials it has demonstrated a 35% increased benefit in the RT outcome. Therefore, the sequential is usually started with ADT followed two months later by the neoadjuvant EBRT and adjuvant LDB that is applied two/three weeks after that. The hormonal involves a Lupron (3-month) shot followed by one or more shots to a defined total period (6 months for your case). These shots will give a blow to the cancerous cells, maintaining them quietly along their life cycle (approximately 6 months). You will experience sort of menaupose symptoms due to the chemical castration (hypogonadism). These usually vanish two month after the end of the effectiveness of the drugs (2x3 plus 2). The RT side effects typically start being felt at one month into the treatment.

As you may understand, "Perineural Invasion" is never seen as a matter of concern in radiation planning because the isodose will cover those areas. The RO therefore is more concerned if there is a positive Bone scan.

In your next meeting with the MO, apart from discussions on treatment options (administered individually or in combinations), you can inquire about the effects of the hormonal treatment and how to counter each particular symptom, would these became nasty or unbearable. You can also inquire on his opinion regarding extra exams that may complement the treatment of choice such as; a bone densitometry scan to check bone health (ADT affects the bone), a colonoscopy to check for ulcerative colitis (may prohibit RT), a complete blood analysis inclusive of the testosterone (regulates the hormonal drugs), etc. Surely this time you should take along copies of the MRI and biopsy report.
Doctors working at the same hospital may have access to the data of a particular patient but they do not look for the details. They procure the conclusions reached by other physicians, trying always not to interfere with their opinions.

I think that you have been assisted at Boston's Dana-Farber. Is this the place where you have done the mpMRI and the biopsy?
You also mention the name of the surgeon, Dr Kibel (meeting of March) , and I wonder if he is Adam Kibel, a specialist in genitourinary oncology. Is he the urologist you met initially?
I have read several of Dr A. Kibel papers, most particularly involving combination treatments. He is an advocate of the so called "mother of all treatments" or more scientifically saying, "Multimodal therapy". This is an approach to treat cancer involving combined weapons to fight the cancer from several fronts at the same time. Surely the practice will assure higher possibility of cure but it will also involve more risks and side effects that may prejudice the quality of life of the patient. Multimodal therapies have shown benefits regarding long chemical free periods (remission) but I have not read yet about their benefits in terms of longer survival rates. Recently, multimodal treatments also include immunotherapy approaches that have shown success in treating cancer. I am from the old school following sequential therapies trying to keep Q&L as much as I can.

I recommend you to prepare a List of Questions for the meetings with the doctors. Try to include items in regards to required preparedness for each type of therapy, the time it takes to recuperate and the expected side effects, like; incontinence issues, libido and ED, late radical proctitis of RT, etc.

Here are some links with information on the above;

https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043740/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5721712/

Best wishes,

VGama

 

Hellostone
Posts: 22
Joined: Jan 2020

VG, many thanks for taking so much time and thought to respond.  I am grateful in a way that mere words won't adequately convey.

I will certainly spend more time digesting this, but wanted to respond quickly to a few of your questions/comments.

You are right that I'm now at Dana Farber, and have appts with MO Dr. H Beltran and Uro Dr. Adam Kibel.  Dr. Kibel is not the urologist I met initially.  That urologist was a local guy outside of Boston (to whom I was referred by my primary care physician); that urologist ordered the mpMRI, conducted the biopsy, and delivered the diagnosis well, and he recommended that I talk with an RO and MO at Dana Farber before we see other again.  When I contacted Dana Farber to schedule those meetings, they said they would also have me meeting with a Dana Farber urologist as a matter of course.  I'm looking forward to meeting Dr. Kibel, whose lectures and interviews I've enjoyed on YouTube (never knew YT could be helpful for such weighty matters!).  I'm not surprised to hear he's a fan of multimodal therapy; I think I recall him saying almost those same words in an interview with Mary Ellen Taplin.

Re clinical staging, so far as I know, no DRE has yet returned anything palpable, so I've assumed I'm at T1c.  But perhaps you meant something else with your comment about clinical stage?

Lastly (for now), I regret doing a poor job in my prior post of describing my first RO appt -- it was just a bit different than I anticipated, but it was still extremely valuable thanks to all the docs we met.  I'll just prepare a bit better next time!

Thanks again

Gforce
Posts: 21
Joined: Jan 2020

You are going to find facilities that don't have a proton machine will not advise you of the benefits. Please do your research so you have those questions ready. No ligitimate RO will dispute the reduction in side effects. If your insurance covers it, then it should be on the table for consideration. Today is 8 of 40 treatments for me and all is well. I am also on ADT up until treatment and through treatment. That is a very good path to follow. You will find it is hell for the first month or so as your body gets as used to low T as it can. After that, just hot flashes. 

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

You are welcome. Please note that I am not a doctor. I try helping the many here with comments and opinions based on my own experience or from researches done along the years while being a patient. I have followed similar steps as the ones you are taking back in 2000 at diagnosis, when I was 50 years old. I think you have done well so far. Let's see what the doctors at Dana Farber have to say.

Regarding the clinical stage, this should have been attributed by your first urologist based on the PSA, DRE, mpMRI, Biopsy and Bone scan. Accordingly, you got high PSA (13.3 ng/ml), negative DRE (-), Positive MRI (+) and Voluminous cancer (5 positive out of 11) Gleason score 7 (4+3). The missing piece is the Bone scan (MX) but with the above data one can assume already that you belong to the staging group 3. Officially it is T2c with characteristics of T3a (high PSA and Gr 4+3). Surely these conclusions would differ if the pathologist at Dana Farber informs findings of a lower grade Gleason in their biopsy's second opinion.

You can discuss the matter with the MO. Remember to discuss on the additional exams and tests I listed above.

Best,

VG

Hellostone
Posts: 22
Joined: Jan 2020

Not sure if it's appropriate to keep appending to this thread, but by way of update:  Ive now met with the Uro and MO at Dana-Farber, both of whom I liked and felt comfortable with--but the real and unwelcome development is that the bone scan and the CT scan each showed suspicious bone lesions on different sides of my pelvis. In other words, their findings didn't overlap or corroborate at all. So an Axumin PET scan is now scheduled next week as a tie-breaker.  Definitely was not expecting these scans to show anything. So now the research efforts intensify, in a different direction.  [ETA:  the pathology read of the biopsy slides by Dana Farber was pretty consistent with the initial read--4+3 with a lot of 4, and PNI evident.]

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

Hello, it's your thread, use it as you see fit.  But in general, it is wise to keep stuff as organized and together as possible, at least early on, as you learn more and mre about your initial diagnosis (which you are still in the process of gathering).  This Board does NOT contain a convenient or logical search mechanism, and things posted at random later on in essence become lost forever to the reading public.  Some guys do copy and past their former stuff together is one way to make things a bit easier.

PCa tumors outside the gland are often tiny, too tiny for most scans to detect.  This probably accounts for the disparity within your scan results.  Almost always, postitive, confirmed metastasis to the bone (which you do not currently have proof of) indicates substantial advancement.

Clinically, your case is still capable of curative intent as regards first-line treatment.   You were wise and correctly guided a time back when first treatment moved away from surgery to radiation therapy, possibly with or withiout HT.   It is necessary to have a world-class M.O. in these decisions; do not use 'local talent,' who 'does PCa,' along with every other cancer known to science.   Remain positive in mind and spirit, continuing to learn and drvie your own course here.

max

Josephg
Posts: 215
Joined: Jan 2013

In my opinion, you should keep updating this thread, since you started it.  In this manner, all of your shared posted information, and Forum member comments regarding your PCa, are all contained in one thread.

Like you, Dana Farber is the medical institution that manages my PCa, and I have the utmost trust in them.  Let's see what the results of the PET scan are, and then you can make more definitive plans going forward.

I wish you the best of outcomes on your journey.

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

I agree with Josephg above. The PET exam will be very valuable in the screening as it checks the whole body. You doing it well in taking time for added information. Do not worry if this delays the final decision, Your status doesn't change in a couple of months. More tests more precise information and better opinions drawn by the physicians. Surely that bone involvement will limit the options. Typically MO recommends systemic approaches where Urologists may prefer a radical. The final decision is yours and you should consider the risks in each treatment, apart from the benefits.

I want to know the results of the PET. I hope they identify and locate the neoplasia.

Best,

VG

NOTE: I wonder about your suggestion in changing threads. You can keep this thread by changing its title, if that is your reason.

Josephg
Posts: 215
Joined: Jan 2013

Good comment/suggestion, Vasco.

I thought of the same thing, shortly after I posted my comment, but I did not have time to re-open it, and edit it to include that suggestion.

Hellostone
Posts: 22
Joined: Jan 2020

Gentlemen, thanks again and always. I will update with the Pet scan results. And while I may yet change the name of the thread (Max, great point about the site's lack of a robust search option), I'm not going to do so yet, as the title still seems strangely apt. With the recent inconclusive scans and the pending Pet scan, I find myself in mental territory like I was a month ago when the Dx was new and most everything unknown. 

joseph, glad to learn you're a fellow DFCI guy. Perhaps we should get forum name tee shirts made so we can identify each other in the 11th floor waiting room?? (unrelatedly, I am going to MGH to meet with MO and RO for additional opinions once the scans are done. Feels like I'm cheating on Dana...)

Hellostone
Posts: 22
Joined: Jan 2020

Glad the CSN board is back up, and thanks to those who made that happen. 

Update:  Axumin PET scan came back negative, meaning clear, meaning some good news, thankfully!  So now both mpMRI and PET scan both indicate the horse remains inside the barn (though I know there could be micro mets outside the gland that no scan could show). 

Accordingly, am back to the fundamental primary treatment decision -- and have decided on surgery after many weeks of research and consults with multiple docs at Dana Farber and MGH. Now deciding between robotic and Open RP. Will meet with Francis McGovern, an oft recommended open surgeon at MGH soon.  Comments welcome!

My sincere thanks, and I'm sure I'll be back soon with more questions!

Josephg
Posts: 215
Joined: Jan 2013

Great news, Hello!

I'm glad to read that you have been able to come to a decision regarding your treatment, based upon the latest and already accumulated information.  You've made your decision, and now own it.

I wish you the best of outcomes on your treatment selection, as well as on your overall PCa journey.

VascodaGama's picture
VascodaGama
Posts: 3177
Joined: Nov 2010

Stone,

I am pleased to know that you are alive and kicking. I wish you total recuperation from the RP and that the success is demonstrated soon.

Sorry for posting my comment on the pathologist’s report (Invasive cribriform carcinoma is present) in this your initial thread because it includes our exchanged opinions and data since your diagnosis that may influence the way we judge it. You posted this;

“I've already received the pathology results and was greatly cheered to learn there were negative margins and no EPE or SVI. I remained scored as G4+3 with plenty of pattern 4 (i.e., 90%), pT2 N0.  That seemed about the best news I could get at this point.
However, there was this additional note on the report: Invasive cribriform carcinoma is present.
How meaningfully adverse is that finding?”

The “cribriform” finding indicated by the pathologist regards the possibility in having recurrence later but it doesn’t mean that you are diagnosed now with metastases. This indication was provide for your urologist to judge your status and provide a pathological stage. In your case he believes it to be pT2 N0. However, he did not include the third item of “MX” that regards findings from previous image exams (MRI, CT, Bs and PET) which were inconclusive for existing far metastases. I think that the ambiguous results of the CT and BS exams on bone lesions and the negative results from the MRI and PET made him to consider your case as contained (pT2). In any case he should have indicated his opinion inserting a third classification of M0, M1 or MX. The cribriform finding may have lead to MX.

I agree with Clevelandguy opinion that each case is different and that you should follow up the results with periodical PSA tests. The PSA should indicate remission (levels below <0.05 ng/ml) and stay there forever. The negative margins, negative SVI, negative EPE and negative lymph nodes leads to believe that your had a successful RP. Congratulations.

Please let us know about your experience in regards to the side effects.

Best Wishes.

VGama

 

hewhositsoncushions
Posts: 344
Joined: Mar 2017

I have been told cribriform is a diagnostic marker for a G4 grading

Hellostone
Posts: 22
Joined: Jan 2020

VG and hewhosits, apologies for the double thread; I posed my question in a new thread as I figured this one was too stale.  I'll update once I talk with my doc about this, as there doesn't seem to be a lot of cribriform postings here (at least that I could find).

Meanwhile, just looking forward to losing this Gucci (catheter) bag in a few days!  Thankfully, its been a smooth recovery from surgery so far. We'll see how the side effects are soon enough. Thanks!

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