HIFU is being offered to me

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JP63
JP63 Member Posts: 33 Member
edited August 2022 in Prostate Cancer #1

I was diagnosed in a 16 core Trus biopsy with 2 cores positive for G 7 (4+3) G7 (3+4) in the left mid peripheral zone

Psa 2.9 free psa. 7  4kscore 20

Multiparametric MRi no Pirad lessions

In the cores 5 mm cores 1 mm was cancer free 4 mm cancer

I assume cancer is touching/adjacent to prostate capsule.

Is HIFU adequate for destroying a lession so close the the capsule/prostate periphery?

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  • Old Salt
    Old Salt Member Posts: 1,404 Member
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    The American Urological Association is negative on HIFU:

    I copy:

    1. Clinicians should inform those localized prostate cancer patients considering focal therapy or HIFU that these treatment options lack robust evidence of efficacy. (Expert Opinion)
    2. Clinicians should inform localized prostate cancer patients who are considering HIFU that even though HIFU is approved by the FDA for the destruction of prostate tissue, it is not approved explicitly for the treatment of prostate cancer (Expert Opinion).
    3. Clinicians should advise localized prostate cancer patients considering HIFU that tumor location may influence oncologic outcome. Limiting apical treatment to minimize morbidity increases the risk of cancer persistence. (Moderate Recommendation; Evidence Level: Grade C)
    4. As prostate cancer is often multifocal, clinicians should inform localized prostate cancer patients considering focal therapy that focal therapy may not be curative and that further treatment for prostate cancer may be necessary. (Expert Opinion)

    I would seriously consider one of the radiation options.

  • JP63
    JP63 Member Posts: 33 Member
    edited May 2022 #3
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    I would really prefer to have my prostate removed.

    However the surgeon that I went to see told me that would be a difficult surgery due to the possible presence of scar tissue.

    I have Crohns disease. 3 years ago after peritonitis I had my sigmoid colon removed and later they were able to reconnect my descending colon to my rectal stump. The anastomosys location is low and supposedly adjacent to the prostate area.

    Anyway I am going to try with another very experienced surgeon to see if he is comfortable doing the surgery.

    In regards to the radiation path my concern is more damage to the rectal wall, since I already gave Crohns disease I would like to avoid damaging more my rectum niw with radiation proctitis. Although maybe they could use one of those gel spacers if the prostate is not attached solid to the fascia b/ the rectum and prostate.

    I have an appointment with a radiologist in 3 days. I am very interested on his opinions regarding my rectal issues.

    Another thing that I read with radiation like brachytherapy is that i would have to be away from other people in order to protect their vital organs, liver, small bowels, pancreas etc. from radiation.

    All my organs are going to be really close to the radiation source not for a while but 24 hours a day. If for them this is not good I assume for me it is also not good. I really dont want to avoid prostate cancer recurrence if I may have higher odds of getting liver or pancreatic cancer down the road.

    But probably there are other radiation methods that may give more localized radiation for shorter periods of time. Maybe that will be a good option.

    i asked my Dr if it was a good idea to do an Oncotype or Decipher test to see how agressive the cancer is. Its weird that my Psa is only between 2 and 3 but I have Gleason 7 (4+3) and 7% free PSA.

    But he told me that was not necessary.

    Of course nothing is perfect and I probably will need just to choose between the lesser of two evils.

    And thanks a lot for taking the time to respond my question!!….it was a very good response indeed!!!

    Thanks!!!

  • Old Salt
    Old Salt Member Posts: 1,404 Member
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    I am sorry to read that your situation is a lot more complex than I envisaged from your original post. I am reluctant to give any further advice because even your doctor/surgeon is reluctant to move ahead.

    But I can clear up an issue with respect to brachytherapy. There are two kinds: High Dose Rate (HDR) and 'seeds'.

    The HDR procedure doesn't leave any radiation in your body. The radiation source is inserted in your prostate for a certain amount of time and then removed.

    The 'seeds' do leave radiation in your body that will decay over time. Patients who undergo this procedure are generally warned what not to do when the dose is still pretty high (no grandchildren on your lap etc.)

    The HDR procedure is newer, and one would seek a practitioner who is well versed in this method.

    Best wishes with the evaluation process for your complex case.

  • JP63
    JP63 Member Posts: 33 Member
    edited May 2022 #5
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    Thanks man!!!…

    This coming week (at last!!!!) I will see a very good surgeon and a very good radiologist. Yup I read about the HDR and I liked the idea. I can mot wait to see the radiologist. And I am sure everything will be ok at the end.

    I spoke with the surgeon that did my colon resection and he disagrees with the idea that I can not have the prostate removed by a good surgeon. He told me that maybe it may be more difficult, but maybe not.

    Whatever, it is what it is.!!!

    I actually consider myself fortunate that they found the cancer with the fusion biopsy since my PSA was low. The lesion did not showed up in the Multiparametric MRI…..no Pirads lesion in the radiology report. But I signed up by chance for a study where they are using some type of program or AI thing to analize the MRI, and that one detected 2 areas of interest…..and bingo!!!…it was in one of them.!!!….just a little bit shocked since it was a G7 (4+3)

  • centralPA
    centralPA Member Posts: 308 Member
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    Was going to post what Old Salt did about HDR Brachytherapy. No radioactivity left behind.


    I’ll also mention that the approach for the HDRBT is trans-perineal, which is a safer approach than through the rectum. Which…after reading your history, I am surprised you had a TRUS biopsy. Seems they would have taken into account your history of surgery there, and done the biopsy transperineally. Curious, was it discussed?

  • JP63
    JP63 Member Posts: 33 Member
    edited May 2022 #7
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    It was discussed but there was a long wait for the transperineal biopsy and I did not want to keep waiting and I was told they were very tiny perforations like when they take biopsies, that it should be ok since I am in remission and taking TNFalpha blockers. The HDR brachitherapy sounds reslly interesting. My appointment with the radiation Dr. Is in 2 days and I am sure it will be considered.

    my 1st PSA 4 years ago that I have a record of was low like 1.4 before all the surgeries. I had a lot of CT scans while I was in the hosp for more than a month and later during that year, I joked that I should glow in the dark. Actually the PSA after that went up to the lows 2’s but my primary Dr prescribed testosterone since I ended the ordeal loosing a lot of weight, depressed etc. and they though it went up because of that. Last year it was between 2 and 3. Even with the PSA being less than 4 they tested the free PSA and it was 7…..4K score 20. No more testosterone. You need a biopsy

    since the PC grows so slowly maybe I had something there before 2018 but I suspect between all the CT and X rays it became more aggresive. Or maybe because of the TNFalpha blocker that I have been taking for a year for Crohns….. who knows.

    the TNFalpha blocker is another story. Since those infusions are “blocking” a “tumor necrosis factor” thing…maybe if it is blocked the tumor would be “happy”????…….woof too many variables in the equation!!!….I just know for sure that I want that thing “cooked” or even better “out” of my system. And of course no more Testosterone.

    i still dont know about the TNF (infliximab). It is supposed to increase you chances of getting certain blood cancers or lymphoma, but I dont know about the prostate cancer.

    I think I really won the lottery between Crohns and now this!!!!…lol... No one in my fathers family had PC and they lived up to their nineties…..in my mother’s family the same….. but we dont know about her fathers side.

  • Clevelandguy
    Clevelandguy Member Posts: 1,083 Member
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    Hi,

    Another type of external beam radiation is Proton beam which has a fixed beam length. It does not completely go through your entire body like other forms of external beam. The radiation actually stops at a certain length and does not go past that length. So the chance of damage to other organs should be less. Just food for thought……….

    Dave 3+4

  • JP63
    JP63 Member Posts: 33 Member
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    I will ask about those 2 this Wednesday for sure.

    I have UHC, hopefully they will pay for those treatments.

  • JP63
    JP63 Member Posts: 33 Member
    edited May 2022 #10
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    no HIFU after meeting with radiologist this afternoon.

    He wants me to have 25 sessions of radiation plus pills and Lupron plus they are going to insert some gel.

    So I am going from 2 hours of HIFU to all this stuff, big difference.

  • centralPA
    centralPA Member Posts: 308 Member
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    I've read about the swelling following HIFU and the need to be catheterized for extended periods, a week or two. Being catheterized sucks, so avoiding that is not A Bad Thing.

    Best of luck with your treatment, @JP63 !

  • Old Salt
    Old Salt Member Posts: 1,404 Member
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    What 'pills'?

    Other than that, the proposed treatment plan looks conventional.

    The gel that you are referring to is probably SpaceOAR. There's a thread about that ongoing on this forum. See also

    SpaceOAR Hydrogel | Prostate Cancer Pre-Treatment Option

  • JP63
    JP63 Member Posts: 33 Member
    edited May 2022 #13
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    Bicalutamide 50 mg

    thats right it should be that gel….I read the thread.

    The lession can not be seem in the Mri so it should be small….it seems he thinks the cancer is kind of aggressive for him to add the hormone therspy I assume

  • Old Salt
    Old Salt Member Posts: 1,404 Member
    edited May 2022 #14
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    What did the radiation oncologist say about the other medical issues that you are faced with? Or, in other words, how will they be addressed?

    25 sessions of IMRT, I imagine and Lupron for how long?

    I also assume that the Gleason 4+3 site made the oncologist recommend the 'hormone' treatment.

  • JP63
    JP63 Member Posts: 33 Member
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    Hi there Old Salt!!.....I assume the Gleason 4+3 was the reason.

    However I wont be getting the radiation treatment for the time being. I finally found a surgeon that is willing to remove my prostate!!!.

    At least this guy is willing to go in and to try.

    The other surgeon just recommended HIFU or radiation.

    I saw him some weeks ago but he wanted first for me to get a bone scan that took forever to schedule and finally the day before they did not had an authorization from my insurance so I had to reschedule.

    The good news is that the bone scan was "clear".

    I also got a higher resolution 3T multiparametric MRI to see if they could find a PIRAD lession with that one but is the same as the original 1.5 T....😕

    ....however the report said something about a "focus of restricted difussion in the left posterior apex showing early nodular postcontrast enhancement measuring 4mm to 5mm" likely that's the tumor....

    Everything else was ok.

    So I finally saw the surgeon again yesterday and he told me that of course it will not be robotic surgery but he thinks that he can do the surgery approaching the prostate from the front. But he cautioned me that if when he looks inside I have a lot of adhesions to the rectum etc then he would abort the surgery. Hopefully that will not be the case. The only thing that I did not like very much is that he told me that if that's the case that I could have NanoKnife.

    He told me that the problem with the focal treatments is that if the lesion is not seen in the MRI.....well they will go and treat the area by the biopsy results but who knows if there are some cells left around....

    I don't know about the NanoKnife vs Hifu. The NanoKnife sounds to me even more experimental than the Hifu. I dont know if the Insurance would cover that. At least my insurance covers the Hifu.

    One thing I don't like is that they scheduled me for surgery for July 21......Another month and a half. It seems he is busy. But he wrote in the order for the scheduler to contact him....maybe I can get an earlier date?

    I also told him that I was on the Casodex pills and that I had some still left and they told me that if that was the case I could just finish taking them.

    One interesting thing is that in the first 1.5T MRI my prostate was 35 cc and in the last 3T one it is 27 cc......maybe an error?? and my PSA also went down to 1.7....maybe a Casodex side effect?....but so fast???

    Whatever I still have more than a month to go for the surgery. In the other place I asked and they ordered a DECIPHER test for my biopsy. Hopefully it wont come back as very aggressive....I try to think that at least 5 mm seems tiny.

    But I would like to get the surgery.....tomorrow.....

  • JP63
    JP63 Member Posts: 33 Member
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    Hi there:

    well just an update.

    I finally got the surgery today this morning.

    And the surgeon was able to do the surgery and to remove the prostate.!!!!…..its out!!!….He told me that he would know in just 10 minutes if he could remove it since I had so many previous surgeries and adhesions in that area.

  • centralPA
    centralPA Member Posts: 308 Member
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    Awesome news, @JP63. Hope your healing goes well and fast!

    Post your pathology results when you get them, and post-prostectomy PSA. Hope both are in the right trend.

  • JP63
    JP63 Member Posts: 33 Member
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    Well I got my pathology results.

    First of all I was very lucky to have posted in this forum since it helped me to steer away from the HIFU thing and to get the radical prostectomy.

    They results are not very good, considering my latest PSA was 1.7 I think but could be much worse I assume.

    The good part first:.....Right and left pelvic nodes (9) were benign. The seminal vesicles were benign.

    My Gleason score was downgraded from 7(4+3) to 7(3+4) with 30% of grade 4.

    Free margins, no intraductal carcinoma, no urinary bladder neck invasion, no pattern 5.

    The tumor was 0.7x0.5x0.6, not very big it seems.

    And now the bad part:

    Stage p T3a N0 , Cribriform glands present.

    The lesion involves the apical mid aspect of the prostate and abuts the capsular surface.

    Extraprostatic extension: present, focal posterior.

    Although I dont know why it also said that the margins were clear.

    So I assume this means that the tumor was able to go outside of the prostate.

    The nurse that gave me the results told me to come in 3 months to get a Psa reading and nothing more.

    If the tumor got outside of the prostate doesnt that means that I should get salvage radiation or hormone therapy?

    I always though that you have to get it before it goes out of the prostate.

    When I heard the extraprostatic extension present thing I assume I kinda of blocked myself and just left and did not ask her anything more.

    My urologist is on vacation so I will need to wait 2 more weeks.

  • Old Salt
    Old Salt Member Posts: 1,404 Member
    edited July 2022 #19
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    This report is complex for a simple-minded guy like me, but I believe that the extraprostatic extension mentioned in the report relates to the cribriform glands. Since they were removed with the prostate, I think that you can relax for now. However, you should definitely follow up with the surgeon about this. Perhaps further treatment is warranted.

    In the meantime, let's hope that the healing from the surgery will go well.

    Here is a link to a relevant paper (while you are recovering):

    Spectrum of Cribriform Proliferations of the Prostate: From Benign to Malignant | Archives of Pathology & Laboratory Medicine (allenpress.com)

  • JP63
    JP63 Member Posts: 33 Member
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    Hi @Old Salt !!!

    Yessssss I am super happy and relaxed that the thing is out. I am not going to worry about it. We will see.

    Thanks God I went with the radical prostratectomy and no Hifu.

    And I am very lucky indeed that I was able to find an experienced surgeon that was ok doing the surgery after all the others that did not want to do it.

    In the first hour when they took out the catheter I could not urinate and I freaked out but now its almost as normal as before. Only some dribbling when I am sitting and I suddenly standup sometimes. And I will try anyway to learn and practice those Kegels exercises.

    I was really worried that because of my sigmoid surgeries and anastomosis that I may get a fistula, but thankfully I did not.

    And maybe I may even get some erections in the future. The Dr told me than in 3 months I could try seeing another Dr for that.

    At least for now when I wake up in the mornings its “bigger” than later during the day…so there is hope!!!

    Thanks to all the forum members for their input. It was really very helpfull.