New Diagnosis

neilm
neilm Member Posts: 17 Member
edited September 22 in Prostate Cancer #1

Hello,

I have been following this board for some time trying to educate myself on PCA. I had a PIRADS4 lesion from MRI ( 6.1 PSA 4K of 27% ) and I attached the results from a just completed fusion biopsy. I do have a Gleason 6 reading. The atypical small acinar proliferation concerns me but I don't see anything over a 6. I am not sure if I should feel concerned or relieved but I will see urologists shortly and talk about our plan. Any insights would be helpful from this experienced group.

FINAL DIAGNOSIS:

A: Prostate, left base lateral, ultrasound-guided core biopsy:

Benign prostate tissue.

B: Prostate, left mid lateral, ultrasound-guided core biopsy:

High grade prostatic intraepithelial neoplasia.

Atypical small acinar proliferation

C: Prostate, left apical lateral, ultrasound-guided core biopsy:

Prostatic adenocarcinoma.

Gleason score 3 + 3 = 6, Grade group 1.

Quantity: Carcinoma involves 1 of 1 cores, representing approximately

20% of the tissue.

Perineural invasion: Not identified.

D: Prostate, left base medial, ultrasound-guided core biopsy:

Benign prostate tissue.

E: Prostate, left mid medial, ultrasound-guided core biopsy:

High-grade prostate intraepithelial neoplasia.

F: Prostate, right base medial, ultrasound-guided core biopsy:

Benign prostate tissue.

G: Prostate, right mid medial, ultrasound-guided core biopsy:

Benign prostate tissue.

H: Prostate, right apical medial, ultrasound-guided core biopsy:

Atypical small acinar proliferation.

I: Prostate, right base lateral, ultrasound-guided core biopsy:

Benign prostate tissue with partial atrophy.

J: Prostate, right mid lateral, ultrasound-guided core biopsy:

High grade prostatic intraepithelial neoplasia.

Atypical small acinar proliferation

K: Prostate, left base lateral, ultrasound-guided core biopsy:

Benign fibromuscular tissue.

L: Prostate, region of interest, ultrasound-guided core biopsy:

Prostatic adenocarcinoma.

Gleason score 3 + 3 = 6, Grade group 1.

Quantity: Carcinoma involves 2 of 2 cores, representing approximately

10% of the tissue.

Perineural invasion: Not identified.

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Comments

  • centralPA
    centralPA Member Posts: 58 Member

    Hi Neil, sorry that you find yourself here.

    It looks like you had a random hit from the biopsy on the left side, and then a targeted hit on the region of interest from your MRI, correct? Was the region of interest also on the left side? I know it changes your risk profile.

    You should consider sending your biopsy of the John Hopkins for review. I had my 3+3 upgraded to a 3+4 by then, accepted by my hospital. If they also say 3+3 then that gives you a warm and fuzzy.

    Looks from here like you are in the low risk category, which is good, if you have to have any cancer. What is the size of your prostate? They get that from the MRI, which then allows you to calculate your PSA density. Lower is better, as you can imagine.

    Finally, consider a genomic test. Wont solely drive any decision, but helps to paint the picture of what you have.

  • neilm
    neilm Member Posts: 17 Member

    I am a little confused. The left Apical Lateral was the PIRADS 4 area of interest. I was reading this as maybe two cores from that area hit Gleason 6, but its not quite clear to me. The MRI identifies left PZ apex as the region of interest. The first hit references that area the second hit references "region of interest" so I am confused ( would that be the same area). Prostate is 38.3 ml. Good ideas to validate the cores, I had thought about the genomic test and that does make a lot of sense. Thank you centralPA for responding I have been watching the men such as yourself on this site helping others. It means a lot.

    Neil

  • centralPA
    centralPA Member Posts: 58 Member
    edited July 26 #4

    Yeah, I’ma little confused reading your biopsy too. In my MRI fused biopsy they took 12 samples spaced on a grid, and then 3 in the PIRADS 4 lesion, for a total of 15. In looking at yours, it looks like 12 sites total, but the last one was in the lesion (region of interest) and sampled twice. This seems to overlap or be really close to the left apical base? So you had 11 on a grid and one targeted spot. Definitely ask your uro about it.

    The two cores in the region of interest only really count as a single core for risk analysis purposes, so that is good. If that region was already close to your Sample C, then it sounds like you have localized Gleason 6 surrounded by some otherwise angry cells. Not the best possible result (they find nothing) but way short of the worst. You definitely have options, including just keeping an eye on it through active surveillance. Lots of time to continue your education. Become an expert!

    Best of luck, Neil, and get that second pathology opinion.

  • Clevelandguy
    Clevelandguy Member Posts: 782 Member

    Hi,

    At 3+3 you have some time to study the big 3, surgery, radiation, or AS(active surveillance). Make sure you have access to the best facilities and consulting doctors. A PET scan and a bone scan are good diagnostic tools. Also check with a Oncologist to look into radiation treatment types if you go that route and have the Oncologist review your case.

    It would be good to know if your cancer is contained within the Prostate or close to spreading to surrounding areas, the scans above should help pinpoint that. If the cancer is buried deep within your Prostate then you could also do AS for some time into the future and then decide later or surgery or radiation . All of these things should help you start to form a treatment path along with consulting with your Doctor team. I have included a link to get you some basic info on treatment types.

    Prostate Cancer Treatment


    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 950 Member

    Those are good comments.

    Do follow up with sending the biopsy samples (all of them) to the Johns Hopkins (prostate cancer) pathology specialists. You can ask your urologist to help out with this:

    Get a Second Opinion | Johns Hopkins Pathology (jhu.edu)

    Johns Hopkins also has a well-recognized Active Surveillance program; I am pretty certain that you would qualify. Nothing wrong with investigating.

  • neilm
    neilm Member Posts: 17 Member

    Thanks to all of you for the comments. I too have considered the lesion location , the MRI indicated the prostate margin was not involved but physically it seems close to me. I appreciate the tip on John Hopkins and a second look at this seems sensible. Multiple cores seem to have something brewing but without fully presenting itself as cancer ( yet ) or is being misinterpreted? Some of the results are somewhat uncommon according to my research. The Apex of the left peripheral zone (target ) would seem to be somewhat close to the margins but the tumor is small < .5 cm but they do grow. Prior to this result I have been researching different treatments. My preference at this point is targeted radiation ( Cyberknife ? ) should treatment be required ( if I am a candidate ) . I could do AS but will need to adjust my mentality . Prostatectomy currently is least desirable but my condition may require it and I need further education on ALL potential treatments. I am lucky to be in the Pacific NW , Seattle Cancer Care Alliance is here which includes University of Washington staff aligned with the Fred Hutchinson Cancer Research Center. I think they may provide some value in second opinions as well!

    Thanks to All OF YOU for helping with this and I wish you the best on your journeys ! I will post any new developments , not the best reason to stay in touch but we all need to make the best of the bad!

  • centralPA
    centralPA Member Posts: 58 Member

    Neil, one point to note, according to my Uro and the literature, most PCa is in the peripheral zone (PZ) of the prostate, so that by itself is not a star flare shot into the sky.

    On your comment, “I could do AS but will need to adjust my mentality”…indeed. You currently need to adjust a bunch of mentalities. :). You just found out you have cancer. Be kind to yourself.

    Be patient, thorough, and relentless on getting smart on this. When you walk into a meeting with your doctor and know what he is likely to say before he says it, then you’re getting where you need to be.

  • neilm
    neilm Member Posts: 17 Member

    Hello CentralPA,

    I have a question regarding John Hopkins and sending the biopsy samples. I assume the reason for this recommendation is because of their high level of competency. As I work through this from Seattle I thought I might utilize the Seattle Cancer Care Alliance ( NCI Approved ) for second opinions. So my question is do you think JH would be substantially stronger than another NCI center for biopsy second opinions? I appreciate your thoughts. If they are top performers then it might make sense to use SCCI locally for second opinions but have JH do the biopsy confirmation.

    Have a great day

    Neil

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    Hi Neil, sorry you are here....

    I will tell you what i know...Most uro's recommend radiation or RP. Both IMO are bad. Everyone's decision is personal. Some don't care about sex. I do. This is a quality of life decision. I know men whom had both radiation and RP. They wish they did not do it. Urologists typically refer to the "Gold Standard" treatment as radiation and removal of the prostate. I fired both uro's because their mindset was typically radiation/RP.

    They are many other options and I suggest to find out about treatment paths. Cryotherapy freezes the prostate and has been around for years. It typically kills the prostate and is less invasive with little side affects. My brother in law had this done 12 years ago and he doesn't even check his psa any longer. His uro said the same thing radiation or removal...He chose otherwise and got Cryotherapy done in Calgary, Alberta. I asked him if he can still get an erection and his answer....its a plumpy...LoL..He is 75 now. HIFU is another option which uses High Intensity Heat to target problem tumor only. Usually done in less then 2 hours. I had this done in Toronto. Cost was 23k.Canadian HIFU facilities typically want to treat Cancer 1/2 patients whom Gleason Score is 6/7. ...and my psa prior to was 10.6 and now is 3.0-3.5. I was a Gleason 7, 2C meaning tumor on left and right of prostate. Right tumor was benign. Typically they put in a folio catheter in penis at surgery for 10 days with a bag....this is to keep urethra open so you can pee...because of the swelling, etc. It sounds worse than it is, but was not that bad. If they take away 25% of prostate you will ejaculate 25% less sperm. Yes everything works with no urinal problems. HIFU is fda approved in Canada/USA. HIFU facilities are everywhere in USA. Another treatment path you mentioned was Cyberknife (SBRT). They do this treatment at a Swedish facility in Seattle. If you have insurance, you may want to consider doing. By the way, if you do radiation or removal and at some time after decide on doing Cyberknife....they will NOT treat you. That Swedish Radiosurgery center requires all MRI/Biopsies and a Pet Scan. Pet Scan will show more then a bone scan. I am considering this treatment even after HIFU. Typically a male 70 and under, the benchmark for psa is 4.5 and under. I would phone the Swedish clinic and talk to them first. Don't wait ....while on AS. Big mistake. You only get one shot at this.!!

    If you don't have insurance, it will cost 36k USD. They first decide if you are a candidate for their treatment or not. If you proceed, they will place gold markers close to prostate. They will then map out a game plan of target areas to treat. They treat with high radiation for 5 days only. I have talked to 3 individuals whom had this treatment in Seattle and their psa number continues to drop. The number (psa) is so low...its hard to believe. All 3 have sex with no issues. One uses viagra.

    Best treatment out there, IMO....is Proton beam therapy. Cost can range from 60-110k USD. There is one facility in Washington state. They use low radiation for 30-40min/day...Similar to Cyberknife, however, it can be 40-60 days depending on how severe your cancer is. I know a friend of mine in Anacortes, Wa. He has no problems. His psa continues to drop. He still gets erections without the magic blue pill....LoL, He has no urinary problems.

    Radiation of the whole prostate, kills the prostate. Many have rectal bleeding. After radiation, they want to give you hormone shots...You may grow breasts. What if they miss the target and hit a kidney, lung, lymph node....Well, the truth is, if you have an infection, the body will not repair itself. After hormone shots, they give you Lupron which kills testosterone.

    I know 2 whom had RP and both which they never went this path. I can see going here, if cancer metalized outside the prostate or in you were a Gleason 8, Category 3/4. Also, many men see uro's every month once they had a RP. Many have urinary IN- continuance or dripping...Many wear diapers.

    Consider doing a DNA test with color.com. They are based out of california and online. Its around 410 Canadian $. They test 30 genes heart, 30 genes cancer and 14 genes medication. This is the best 400 bucks I ever spent. See if your cancer is malicious? Br genes are important.

    Dietary choices are Huge...less red meat, no sugar, no salt...no processed meat...limit dairy, milk....eat more plant food and vegetables, kim chee, tomatoes, ....Watch "Game Changers" on Netflix.

    My advice....don't panic...make smart choices and find out other options....Phone them, get facts, testimonials.

    Don't trust urologists...Yes...John Hopkins does do good work on slides.

    Treat early.

    Some men don't give a **** about sex...Its like I said, its personal...maybe you are 50...don't know?

    If want more information, numbers or people to contact let me know.

    Cheers,

    Danno

  • centralPA
    centralPA Member Posts: 58 Member

    Hi Neil,

    I think JHU is the top in biopsy second opinions, due to the expertise and volume of experience. When you send it there, Dr. Epstein is the reviewer, and he is tops in his field. Why send it elsewhere? Distance doesn't matter since it is mailed no matter what. Go with the best.

    Now, I know nothing about your Seattle Center and its quality. I'm sure they're good too. Up to you to decide who is best.

    @Danno99Advocate , I wanted to mention that both Cyberknife and Proton Beam are external radiation therapies too. Cyberknife is really just a brand name for a photon therapy. Proton beam theoretically dumps most of its energy just in the prostate, but it is an external beam. You left off brachytherapy, which is very localized and can focus on the tumor.

    I'm glad your HIFU worked for you!

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    Hi CentralPA, Cyberknife uses high radiation and only targets problem tumor. It does not radiate good cells. Proton beam therapy is similar, however, uses low radiation only for a longer period of time. Call it whatever you want, external beam or otherwise, point being....IT WORKS. If you have insurance do Proton Beam Therapy if they will take you otherwise do Cyberknife. Both treatments are less invasive then any treatment out there with little or none side affects. Brachytherapy is IMO, a curative treatment. Typically they do Brachytherapy on men whom are over 70. I do have one friend in Nanaimo, BC whom had this done last Dec./2021. He still does not get an erection. His psa continues to drop. He is 63. By the way, I am 68 and will be 69 this October...I don't think I am out of the woods yet, however, I make inquiries on whats out there. I am on 4 forums...Just signed up to this one today.


    I don't trust urologists because my first urologist did not tell me anything. He did not suggest diet changes or other treatment paths when cancer is Gleason 6, 3+3being considered AS. That's the time to do something not when it is Category 3, Gleason 8. Typically, urologists are surgeons and they want to cut it out....thats what they do.


    Thanks, on HIFU comment working for me for now,....however, I am not naïve and yes, cancer comes back in a heartbeat with a vengeance.

    I did find a document comparing HIFU with RP from London....It is very interesting....They compaired approx...250 or so patients over a 10 year time line. Recurring cancer on both was less with HIFU. Typically with RP, they do salvage therapy (SRT) on many afterwards, if need be. & cancer has also been known to come back (BCR)...Biochemical Recurrence.


    Cheers,

    Danno

    PS I have not met one urologist who suggested any treatment path other then Radiation or RP, I am now looking for my 3rd urologist.

  • neilm
    neilm Member Posts: 17 Member

    CentralPA and Danno,

    Thanks for your help. Information is elusive in this business, I see data that says 80% of RP patients regain full sexual capacity. This is hard for me to believe based on what I have heard from patients. My thought process now is that RP would be my least favorable option, at Gleason 6 it seems unrequired at the moment. I am somewhat perplexed of the complete meaning of the acinar proliferation or the Hipin in my result ( but I know its not good ). Targeted radiation such as Cyberknife makes some sense but if I am going down that path it appears proton therapy might be less destructive to sexual function. The idea of a middle ground strategy is interesting and gaining ground for me. Some of these ablative processes ( HIFU, Laser , Cryo ) may work to destroy tumor. Some indications are that the dominant lesion can drive the development of others. Not hard science yet but if my singular lesion could be ablated could that roll the clock back on this while it's early? Lot's of questions and I am frustrated as I believe some data I find is just wrong. While RP is the gold standard it appears recurrence is no different than with radiation , are they both gold? Not sure if the ablative strategies preclude a future treatment with radiation or RP but my journey is to find out. Thanks for all of the ideas. I will post here as I move forward, urologists' meeting tomorrow. PS I am 67 and sex is still an important issue for me. Changing diet as we speak, reducing meats and more veggies...

  • Clevelandguy
    Clevelandguy Member Posts: 782 Member
    edited August 4 #14

    Hi,

    The Cyberknife radiation beam goes completely through the body from entrance to exit and can hit other tissues or organs during its travel. Most doctors will use a gel inserted between the rectum and Prostate to protect the Rectum from radiation. Proton beam radiation has a fixed length beam which enters the body and stop at the cancer site. It does not go past the cancer to hit other tissues or organs. Most people have less side effects with radiation external beam types but some have major side effects, so its not a clear cut with either surgery or radiation. I don’t know of any type of treatment that does not have side effects and the severity is not the same from person to person. Need to study the various treatment types and know what the possible side effect could be.

    I did have robotic surgery and it did take about 1-2 years to be hard enough to penetrate. Was still having sex but not just penetration, had gradual improvement over the course of my recovery. There is no set answer on that, it goes from a few weeks to not at all to return to a usable member. But its your choice based on your situation and consultation with your medical team and family.

    Dave 3+4

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    NeilM

    No pun intended,.....I don't believe that 80% of data shows RP regain full sexual capacity. Where did you get that from?


    FYI, my urologist in Aug/2020 said, Radiation or Removal. At that time, I believed in him. He was concerned more about his pocket book, then my quality of life...Pathetic is an understatement. Yes, I did not know of PC treatment options. I mentioned to him about Cryotherapy,....his answer: "Oh, do they still do that?" He's asking me...OMG

    I found HIFU online and I started to inquire by phone consult. Dr. Fleshner, head urologist at Princess Margaret Hospital in Toronto and professor as well touched base with me over phone. He wanted me to do a DNA test with color.com. Pending those results would decide if I was a candidate with his HIFU treatment. I had no malicious genes of cancer in DNA. I had HIFU on Nov.22/2020.

    I was not well versed on treatment options...Today, knowing what is out there, I would do things differently. I would prefer doing Proton Beam Therapy because it uses low radiation targeting bad cancer in prostate. It is less invasive and does not give patient side affects. Cost is the issue. If no insurance, 60k USD minimum and possibly up to 110k USD. Yes, it does WORK.

    Next best is Cyberknife. (SPRD). Yes, it is external beam therapy radiation....high doses for 5 days only targeting bad cells/tumors in prostate and leaving good cells alone. This 2 is less invasive than other treatment paths.

    One point I forgot, concerning Brachytherapy...they place usually 100 radiation pellets around the prostate...it can be more depending on the size of the prostate. I for one, would not want radiation left in my body. But, that's just me.

    Hope this helps!

  • centralPA
    centralPA Member Posts: 58 Member

    @neilm you wrote...I am somewhat perplexed of the complete meaning of the acinar proliferation or the Hipin in my result ( but I know its not good ).

    Here's my understanding. The Acinar and the HGPIN are not cancer. They do often correlate with cancer, though, so if you had a biopsy and they found only that, you'd worry there might be some unfound cancer. But your cancer was found. Search on "Significance of Atypical Small Acinar Proliferation and High-Grade Prostatic Intraepithelial Neoplasia in Prostate Biopsy"

    As far as RP goes, I would definitely not say it is "the" gold standard treatment. I would never get it myself.

    I expect your Uro will recommend AS if they are following the latest guidelines.

    @Danno99Advocate the HDR brachytherapy (high does rate) is a one and done procedure. Nothing left in the body. That would be my choice if I wasn't on AS and I hadn't had a HoLEP.

  • neilm
    neilm Member Posts: 17 Member

    Thanks again,

    Not sure I can cite the 80% source, I may have it in the file I will check, but the sort of comment posted below is what can really create confusion. I am not an expert yet but this does not seem correct ( I know I am not at a point to consider this drastic treatment )

    "Most men who have normal sexual function and receive treatment for early prostate cancer regain erectile function and can have satisfying sex lives after robotic prostatectomy. However, it is a gradual process and may take up to a year. Very few of our patients experience erectile dysfunction, but we work closely with those who do."

  • centralPA
    centralPA Member Posts: 58 Member

    I saw this on twitter, from a Urologist, with the caption “Me when prostate cancer surgeons start talking about their postoperative ED rates"

    https://twitter.com/kjdelay1/status/1537586312303112192?s=21&t=PpHoyRk_WCiYLDelUGRNKg

  • Rob.Ski
    Rob.Ski Member Posts: 87 Member

    Neil,

    I had RP at Hopkins last Feb with good results. My doctor had statistics that were published from His out comes of RP for both urinary incontinence and erectile function. It would be more beneficial to have your specific doctor's results than a general statement that 80% recover sexual function from RP. Something to consider when looking at any treatment method.

  • neilm
    neilm Member Posts: 17 Member

    Thanks Rob.Ski,

    Good advice , I have learned from research that surgeon experience is a big differentiator. If I need the procedure at some point I will certainly look for historical outcomes. Perhaps there are others that bring down the average so to speak.

  • Danno99Advocate
    Danno99Advocate Member Posts: 8 Member

    Neil, & @Clevelandguy

    I just read a report....Focal therapy compared to Radical Prostatectomy for Non-Metastatic Prostate Cancer. This was a study done in London on 246 patients whom were the same grade/gleason score candidates...246 patients with 8 year results. I tried to put the web link address and pdf file, however, this forum rejected that post because i am a new user....LOL...I've had prostate cancer for 6 plus years...

    So, concerning ED. In the factual report, 68% whom had HIFU had no ED difficulties....39% whom had RP had no ED difficulties. 97% HIFU patients were pad free continuance and 86% of RP patients were pad free continuance.

    I for one would not go with RP if Stage 1/2 with Gleason score 7 (Intermediate). RP is the last resort...IMO. Granted, if I was a Grade 4 Cancer patient...I do understand and empathize with men whom came to this decision. Its personal. I believe better choices are out there if AS newly diagnosed prostate cancer patient.

    Urologists push Radiation and/or RP. Depending on your PC psa, Grade of cancer, gleason score, aggressiveness of cancer, etc.. will weigh heavy on your decision. Is sex important? If it is, resource/find out all treatments. Your uro will NOT TELL YOU!...this is the truth. It requires allot of reading, phone calls, testimonials, etc. My advice, Just Do it!

    Now, concerning Brachytherapy, Yes I was aware of low radiation (pellets inserted around prostate 100 or more) and high radiation Brachytherapy. I know 2 whom had it done. One is my friend's brother...He is 75. He has grade 4 PC and when you reach Grade 4 typically he has 5 years max. till death. They did Brachytherapy on him to kill his prostate and slow things down. The other is a friend of mine in Nanaimo, BC. He is 62/63 and recently had it done last Dec/2021. His psa continues to drop. He cannot get an erection. He was going to consult with uro on a solution.

    Now, concerning Cyberknife (Swedish Facility in Seattle Wa). I asked the question, posted by Clevelandguy...so, i asked my friend Al as he did treatment at that facility. This is word for word: Danno, I had SpaceOAR hydrogel which is inserted between rectum and prostate to create additional space in that area. The SBRT radiation beam dose is very low as it enters the body but when entering the prostate is very high. Once the beam exits the prostate and makes its way out of the body the dose drops off acutely. The whole idea is to protect the surrounding tissues and organs. I hope this explains it!

    Whatever decision you chose can be life altering. There is no turning back. You live with it. There are no guarantees when it comes to PC. The only guarantee I know is death & taxes.

    Re: Gold Standard comment....I never said this comment to anyone. I have had it said to me from 4 different people.

    Two were my urologists,(I fired both of them) one was my brother-in-law because that's what his uro told him. He went with cryotherapy. The last one whom said that to me was a cousin of mine in Calgary. His uro told him RP was the gold standard and that's what he told me. That cousin did RP & has had nothing but problems...Hell and back.

    By the way, I have no problem with an erection....No pills or supplements.

    Do your homework and make inquires, calls to facilities that treat men's prostate cancer.

    Cheers,

    Danno out