Need treatment advice - especially regarding HIFU

CoolDady
CoolDady Member Posts: 11 Member
edited March 9 in Prostate Cancer #1

Hi, Everyone.

I'm 51 years old and was diagnosed with prostate cancer a couple weeks ago after an elevated PSA was found in my yearly checkup. This was the first time my PSA was ever tested. First test: 9.5, second time 9.7 with a 2.96 predicted value. Biopsy results came back with two positive results: one at 3+4 in right base and 3+4 right mid; adenocarcinoma. Waiting to get MRI and Decipher tests.

Original urologist (local hospital in small town) - recommended active monitoring or HIFU (without mentioning the high cost and not covered by insurance), possibly Cryo, and to avoid radiation if at all possible; left me feeling like (reading between the lines) time is on my side, this is very early stages, I likely have several months if not a year or two possibly before I need treatment (again, reading between the lines). Pretty much left me on my own to do own research.

Spent two weeks researching - and found numerous posts of everyone who did HIFU indicating how they had one treatment, went fabulously, no followup, cost 10 years ago $25k or so... no idea on recent costs, highly recommend.

Went to Mayo, and met with initial Urologist (possibly intern) and pretty much shocked me: warned me that I am more intermediate, should consider making a decision soon because once it metastasizes, I'm toast.

He left, older (but still young) urologist comes in and agrees with me to see MRI and Decipher tests. His data suggests that I have a 5-15% chance of it metastasizing over 10 years, (possibly less basred upon MRI and Decipher results) and with localized treatment it drops in half. Also, with HIFU or other non-RP treatment I have a 60% chance of needing followup treatment.

So I went from "pro-HIFU" to wondering if its just an expensive way to delay the inevitable. Yeah, I'd love to avoid the ED and other side effects... but... its not as clear decision considering the cost and risk. I'm tempted to say screw it and do the RP and be done with it.

My questions, and I appreciate all advice (and sorry for the length of my post):

1) How much is HIFU costing these days? Either in the US, Canada, or North/South America areas?

2) I went from considering spending large out of pocket money to be "one and done" to reconsidering: if I go down the HIFU road, sounds like I will be out $20k-25k (just guessing), need to maintain biopsies, MRI's, etc..... continue with the risk of it getting missed AND high chance that I will need round two of treatments in 5-10 years for another $10-20k (at least if I stick with HIFU).

3) Would be interested to hear from people who tried active surveillance (or at least didnt get treatment right away) and how long for them before it worsened?

4) Anyone get HIFU and need further treatments? How long until second treatment, what did you use for your second treatment, looking back would you choose differently.


Thanks

«1

Comments

  • Josephg
    Josephg Member Posts: 336 Member

    With two 3+4 PCa spots, with one on the base, my lay person recommendation is to seek advice from a Medical Oncologist on specific treatment protocols and his/her recommendation which one would be best for you. IMO, treatment action is needed for your PCa, otherwise it will continue to grow and eventually travel outside of the local prostate area.

    A number of folks (myself included) have had 3+4 on the initial biopsy, and later found out that they also had 4+3 in other parts of the prostate.

    The final decision of course is yours, but I strongly recommend that you seek advice from a Medical Oncologist. The MRI will provide you with additional important information that will be very helpful to you in determining if any other PCa spots exist.

  • Old Salt
    Old Salt Member Posts: 1,028 Member
    edited February 4 #3

    You seem to have come to the right conclusion all by yourself; HIFU is NOT the way to go!

    As you know, prostate cancer is usually multifocal and it's very likely that you will need further treatment down the road after HIFU. This is not just my opinion, but that of a consensus panel of the AUA/ASCO (recommendation 13):

    Clinically Localized Prostate Cancer: AUA/ASTRO Guideline (2022) - American Urological Association (auanet.org)

    The next question relates to Active Surveillance. Criteria vary for such a program, but with at least two Gleason 3+4 lesions, I would be very reluctant to go that route. The chance that cancer would escape (metastasize) seems too high. In other words, your case needs treatment. The two remaining options are surgical removal and radiation. I recommend discussing your case with specialists in those areas. Be aware though that most urologists don't know much about current radiation therapies (there are several). You do have some time for further study; so that's a plus.

    Please report back on your progress on your journey; we can try to help as you gain more information.

    Best wishes for success.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,770 Member
    edited February 4 #4

    Cool,

    Welcome to you here at the PCa Board. Your 'local talent' urologist would never see my handsome face again -- just saying. The most common initial curative treatment for your particulars is probably RT, by itself. Either IMRT, or SBRT, which is usually referred to by the manufacturer name of 'Cyberknife.' Very generally, if the doctors agree you have no metastasis, either form of RT is regarded as curative. Also, side-effects are (relatively speaking) minimal. Most guys will not have long-term ED or incontinence. Ask your doctors about this route, and I am surprised they have not already recommended it. The other route for intermediate, IF they strongly agree there is not metastasis, is surgical removal. Surgical removal and RT are essentially equal in curative outcome, IF there is no metastasis. But get full information regarding side-effects before deciding anything. And I agree with the writers above, that A/S is probably off the table, per the guidelines in place around the country.

    max

  • CoolDady
    CoolDady Member Posts: 11 Member

    Thank you everyone for your support. I’m truly great full for your feedback, especially of those who are long time survivors willing to help us “new pups”. What I am trying to understand, and I don’t mean this in a negative sense since there are no simple answers- is what are the driving factors for those pursuing HIFU treatments? Unless Medicare covers it, money isn’t a factor, or being confident that future treatments wont be needed … it seems like a high price (regular insurance won’t cover) to kick the can down the road so to speak (in 2-10 years back in the same situation and out $25k). I’m all for minimizing ED risk, leakage, etc … and again, I’m early in my research and don’t want to offend anyone for a difficult decision….. is there something I’m missing?

    thank you all

  • WJG62
    WJG62 Member Posts: 3 Member

    Hello

    Was diagnosed with prostate cancer and neck cancer T-1 location on spine.

    My Oncologist has recommended hormonal therapy to lower the testosterone level in my body. Once testosterone levels are lowered then radiation is scheduled to be done, 9 weeks, 5days a week.

    Oncologist says this should be a 2 year process.

    QUESTION ???

    Has anyone had this and the procedure done? Asking for details of after procedures so I have an idea from someone who has experienced it, rather than have Dr tell me ALL the possible side effects.

    Thank you, Wayne

  • Josephg
    Josephg Member Posts: 336 Member

    I just got off a 2 year stint on Lupron, Zytiga, and Prednisone, after receiving SBRT radiation to my pelvis for a local metastasis. Currently, I do not show any signs of PCa.

    Years ago, I went through IMRT radiation, which I believe your doctor is recommending for you. I never missed a day of work, while undergoing this radiation. I suggest that you discuss potential options such as SpaceOAR for protecting other organs in your body from the radiation.

    My position is this: If you want the best chance for a long life, you need to fight the PCa with whatever tools that your Medical Oncologist recommends. If not, you already know what the end result will be, and it is a very ugly way to go. At the end of the day, the decision regarding treatment options are yours and yours alone.

    I wish you the best of outcomes in your PCa journey.

  • Old Salt
    Old Salt Member Posts: 1,028 Member

    Wayne, please start a new thread. You will get more attention.

    The New Topic 'button' is on the right side of the front page.

  • CoolDady
    CoolDady Member Posts: 11 Member

    Thanks, Old Salt

    any suggestions regarding my question regarding the motivation of going HIFU?

  • Old Salt
    Old Salt Member Posts: 1,028 Member

    Many patients rely on their doctor's advice (who may have a conflict) and do not do their own 'research'.

  • centralPA
    centralPA Member Posts: 86 Member
    edited February 6 #11

    Regarding the motivation for HIFU, it seems intuitive that with cancer in the prostate that there ought to be an intermediate step between removing the whole prostate or not removing anything. For example, I had 70% of my prostate removed via a HoLEP procedure to resolve BPH and urinary problems (mission accomplished!). Why not the cancer?

    The trick is in exactly identifying where the cancer is and where it isn't, and only removing the bad parts. This has proved problematic for a bunch of reasons, including that PCa likes to spread itself around, and neither biopsies nor MRIs are 100% good at targeting the disease.

    Highly recommend you read the book "The Key to Prostate Cancer" by Dr. Mark Scholz. Link here to his site.

    Also, if you post your full biopsy and MRI results, we will gladly pontificate on them. Unfortunately, we know how to interpret them now.

  • centralPA
    centralPA Member Posts: 86 Member
    edited February 6 #12

    Double post

  • Steve1961
    Steve1961 Member Posts: 306 Member

    I am going to give you a bit of advice and I hope that you’ll take it but if not it’s up to you five years ago I was diagnosed at age 56 PSA was 7 gleason 7 3+4 whatever I saw radiation doctors I saw surgeons all they did was confuse me they all had different opinions you’re too young it is simple. There are three steps when you get prostrate surgery the first step is get the surgery done get it done by a good surgeon one that has at least 2 to 3000 surgeries under his belt you do that it will go well and you will not even need radiation keep the radiation in your back pocket in case it does come back one day and then the third and dreaded option is hormone treatment you do not want to do that sure I did radiation treatment with the booster and yes it did work out for me so far five years but do not let them tell you you can have surgery after radiation because you can’t it’s very dangerous I skip step one so do yourself a favor quit asking questions on this forum you’ll get tons of opinions some good some badFind yourself fantastic surgeon set the date and do it I know three people three men since my diagnosis that are way older than me in their 60s had the surgery done two of them were back to work within three weeks the other one about five and they all are fine you will be fine get the surgery done that’s just my opinion if I can go back I would get it done I would not think twice

  • CoolDady
    CoolDady Member Posts: 11 Member

    Thank you so much for your responses. I apologize for not getting back to you sooner, and a special thank you for those willing to be open regarding their complications. Its bad enough to be dealing with cancer, but to then also worry about complications, uggh. Special note - Decipher test was not completed as I was told "they have been trying to process your tissue, but there is such a small amount of cancer, that they are unable to do it". So not certain what everyone's opinions are regarding alternatives (various clinics where you can send in samples - like hair or saliva(I believe). In a month I am going back to Mayo clinic to discuss focal treatment options, realistically, HIFU too expensive since it sounds like high likelihood of going back in a few years and treatment is $25k. Leaning towards cryotherapy, but we will see.

    Biopsy was done locally, MRI by Mayo clinic.

    SPECIMEN:

    A. Right prostate base

    B. Right mid prostate

    C. Right prostate apex

    D. Left prostate base

    E. Left mid prostate

    F. Left prostate apex

    DIAGNOSIS:

    A. Prostate, right base, core biopsy:

    Focal adenocarcinoma, Gleason score 3+4 = 7 (grade group 2),

    Measuring 1mm in greatest dimension.

    B. Prostate, right mid, core biopsy:

    Focal adenocarcinoma, Gleason score 3+4 = 7 (grade group 2),

    Measuring 1mm in greatest dimension.

    C. Prostate, right apex, core biopsy:

    Benign prostatic tissue.

    D. Prostate, left base, core biopsy:

    Benign prostatic tissue.

    E. Prostate, left mid, core biopsy:

    Benign prostatic tissue.

    F. Prostate, left apex, core biopsy:

    Benign prostatic tissue.

    Comments:

    The results of this case were discussed with the office of

    CLINICAL HISTORY:

    Elevated PSA

    GROSS EXAMINATION:

    A "*** - right prostate base." The specimen consists of

    2 gray-tan core pieces of tissue, 1.1 and 1.3 cm in length, each to

    0.1 cm in diameter, all in one.

    B. "*** - right mid prostate." The specimen consists of

    2 gray-tan core pieces of tissue, 1 and 1.1 cm in length and each to

    0.1 cm in diameter, all in one.

    C. "*** - right prostate apex." The specimen consists

    of 3 gray-tan core pieces of tissue, 0.3-1.3 cm in length, each to 0.1

    cm in diameter, all in one.

    D. "*** - left prostate base." The specimen consists of

    2 gray-tan core pieces of tissue, 0.9 and 1.2 cm in length, each to

    0.1 cm in diameter, all in one.

    E. "** - left mid prostate." The specimen consists of

    2 gray-tan core pieces of tissue, 0.8-1.3 cm in length, each to 0.1 cm

    diameter, all in one.

    F. "*** - left prostate apex." The specimen consists of

    2 gray-tan core pieces of tissue, 0.6 and 1.1 cm in length, each to

    0.1 cm in diameter, all in one. KB

    MICROSCOPIC EXAMINATION:

    A. Sections reveal core biopsies of prostate containing

    adenocarcinoma, Gleason score 3+4 = 7. Adenocarcinoma is present in

    one of the two core biopsies and measures approximately 1mm in

    greatest dimension. Immunohistochemical stain for PIN-4* is

    supportive. A control is reviewed and demonstrates appropriate

    reactivity. Reviewed in concurrence with Dr. ****.

    B. Sections reveal core biopsies of prostate containing

    adenocarcinoma, Gleason score 3+4 = 7. Adenocarcinoma is present in

    one of the two core biopsies and measures approximately 1mm in

    greatest dimension. Immunohistochemical stain for PIN-4* is

    supportive. A control is reviewed and demonstrates appropriate

    reactivity. Reviewed in concurrence with Dr.  ***.

    C-F. Sections reveal core biopsies of benign prostatic tissue.

    Immunohistochemical stains for PIN-4* (blocks C-F) are supportive.

    Controls are reviewed and demonstrate appropriate reactivity.


    MRI _______________________

    MR PROSTATE WITHOUT AND WITH IV CONTRAST - Details

    Study Result

    Impression

    Focal enhancing lesion in the right mid gland, which may correlate with biopsy proven

    malignancy. Extracapsular extension is not definite as described. No suspicious lymph nodes or

    osseous lesions are seen..

    Narrative

    EXAM: MR PROSTATE WITHOUT AND WITH IV CONTRAST

    CLINICAL HISTORY: Gleason score 3+4 prostate cancer on the right.. Most Recent PSA 9.5 ng/mL per

    EMR..

    PROSTATE:

    Volume: 25cc

    Exam quality: Good. Diffuse intrinsic T1 hyperintense hemorrhage/hematoma in the prostate, which

    limits evaluation.

    Peripheral zone: Diffuse poorly defined low signal intensity in the bilateral peripheral zone.

    Diffuse hyperenhancement of the peripheral zone, greater on the right. Mildly prominent low signal

    intensity in the right posterior lateral mid gland on image on image 21 series 6 with focal

    hyperenhancement that the lesion measuring about 1 cm on image 19 series 31002, which may correlate

    with biopsy proven malignancy. Transition zone: No suspicious lesions.

    LOCAL STAGING:

    Capsule: Extracapsular extension is not definite at the level of mid gland. Mild haziness along the

    capsule in the right base extending along the neurovascular bundle on image 18 series 6, favored to

    be secondary to superimposed inflammation rather than tumor extension.

    Neurovascular bundle invasion: as above

    Seminal vesicles invasion: Absent

    Other organ invasion: Absent

    LYMPH NODES: Negative for suspicious lymph node(s).

    BONES: Negative for suspicious bone lesion(s).

    OTHER FINDINGS:

    PROSTATE MRI TECHNIQUE: Multiparametric MRI of the prostate was performed at 3 Tesla with surface

    coil. High resolution T2WI, DWI/ADC, and DCE imaging with IV contrast performed.

  • CoolDady
    CoolDady Member Posts: 11 Member

    I purchased the book, and admit have not read it in its entirety...and unless I am mistaken, he really doesn't spend much time talking about HIFU or cryo. Am I missing something?

  • centralPA
    centralPA Member Posts: 86 Member

    It looks like you had your MRI after your biopsy, is that correct? If so, how long after?

  • CoolDady
    CoolDady Member Posts: 11 Member
  • centralPA
    centralPA Member Posts: 86 Member

    That's a shame, because as the MRI review notes, there are all kinds of artifacts left over from the biopsy that mess up the MRI, "Diffuse intrinsic T1 hyperintense hemorrhage/hematoma in the prostate, which limits evaluation."

    I'd greatly reduce the weight given to the MRI results in any decision making, based on that. Your prostate got shanked a whole bunch of times, and was still recovering.

    Agree the book author doesn't touch much on HIFU or Cryo or any of the localized treatment. They're just not standard of care yet.

    Your biopsy makes it sound like you are an AS candidate.

  • CoolDady
    CoolDady Member Posts: 11 Member

    All these things I’m learning after the fact… kinda disappointed the Dr.’s didn’t mention it. (Do MRI first because rather risking an unnecessary MRI than screwing up results, and to wait longer to heal). We’ll see abou AS- I figured once you hit 3+4 and more than one spot, it’s generally frowned upon. At this moment, I’m tempted to go cryo for $4k and move on. They (Mayo) did say they’d want to do their own biopsy before any procedure. I couldn’t fully understand the report, glad you called that out. How many more months to redo the MRI? Biopsy was around Jan 10.

  • centralPA
    centralPA Member Posts: 86 Member
    edited March 1 #20

    The question regarding AS is what percentage of the 3+4 is 4, and what percent is 3. You also don't have much cancer, as per the biopsy and the (poorly resolved) MRI. Also, you're own risk preference.

    It really is a shame they did the biopsy first. Best practice for quite a while now is MRI first, identify areas of interest, then biopsy on a pattern plus specific sampling in possible lesions. Your care team did you no favors by reversing the sequence. I'd be pissed, frankly. As for how long for an MRI after a biopsy, the fact that the biopsy artifacts interfered with the MRI tells me longer than what you had. From this article...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3955341/

    Above all, post-biopsy hemorrhage, which is generally observed during the first 8 weeks after the procedure is a substantial limitation

    Definitely, Mayo is a center of excellence, so the right guys to talk to. Best of luck!

  • Old Salt
    Old Salt Member Posts: 1,028 Member

    Please consider Stereotactic Body Radiation Therapy; five or fewer treatments and excellent results for Gleason=7 patients with cancer contained within the prostate. Insurance should cover most of the cost.

    You do have some time to get better educated.

    PS: Regarding the MRI, I agree that Mayo should have known better!