Prostate cancer Please help

Jess4566
Jess4566 Member Posts: 15

Hello, 

My dad has been diagnosed with stage one prostate cancer. He has a Gleason score of 7. We are looking at all our options and doing our research. One of our options is MRI Guided Focal Laser Ablation. Has anyone here have that done? If so, could you please tell me your experiences. Dates are important. How long ago did you have this operation? Have you experienced any major issues post op? Has the cancer recurred?

By the off chance, has anyone seen Dr. Sperling? What were your experienced with him?

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Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited March 2018 #2
    .

    I am sorry for your father's diagnosis.

    MOre information is needed to provide best answers.

    Was the Gleason found a 3+4=7 or a 4+3=7. There is more of the number mentioned first, so 3+4 is less aggressive than 4+3

    Was the biopsy MRI guided, or random. How many cores were taken? HOw many were positive. What is the involvement in each of the cores that that were positive, that is what is the perecent of each core that was positive.

    What is the PSA history for your father.

    Any other diagnostic tests, image, etc.

    Your fathers age and health issues if any?

    I know about MRI Guided Focal Laser Ablation, and have heard of Dr. Sperling

  • Jess4566
    Jess4566 Member Posts: 15

    .

    I am sorry for your father's diagnosis.

    MOre information is needed to provide best answers.

    Was the Gleason found a 3+4=7 or a 4+3=7. There is more of the number mentioned first, so 3+4 is less aggressive than 4+3

    Was the biopsy MRI guided, or random. How many cores were taken? HOw many were positive. What is the involvement in each of the cores that that were positive, that is what is the perecent of each core that was positive.

    What is the PSA history for your father.

    Any other diagnostic tests, image, etc.

    Your fathers age and health issues if any?

    I know about MRI Guided Focal Laser Ablation, and have heard of Dr. Sperling

    Unfortunately, we are unsure

    Unfortunately, we are unsure of the order. We were all pretty shocked and unprepared for this. His biopsy was done by the needles. The doctor took for 10 samples and out of the 10, four tested postive for cancer. We don't know the aggressiveness of the cancer. It's localized in his right side. His psa has slowly climbed up over six years. I believe his last test of psa was an 8 or 9. He took the 4k score. My father is 58, he's healthy as a horse (doesn't smoke doesn't drink) and he never, still doesn't, showed signs of prostate cancer. We are in the process of getting a pet scan of the prostate. Right now, we are trying to find people who had this surgery for some time. We want to know what's the percentage of it recurring and whether or not this is a good option for him. He wants to take the best choice he can.

  • Old Salt
    Old Salt Member Posts: 1,284 Member
    edited March 2018 #4
    It's pretty normal to be in

    It's pretty normal to be in shock after a (prostate) cancer diagnosis. But since your Dad has stage 1 diseaeas with a Gleason score of 7, you and your Dad have time to study all the alternatives that are available for treatment. Although FLA is a possible therapy, it is NOT recommended by the American Urological Association (AUA):

    Clinicians should inform low-risk prostate cancer patients who are considering focal therapy or high intensity focused ultrasound (HIFU) that these interventions are not standard care options because comparative outcome evidence is lacking. (Expert Opinion)

    Moreover, in my (not so expert) opinion, when one has several cancerous loci, there are likely to be others that are currently not detectable, or that may develop over time. Those will need treatment at some point in time. Doesn't it make much more sense to treat the whole prostate with radiation and destroy all cancerous loci in one swoop, even the tiny ones? 

    In a practical sense, I doubt that MRI guided FLA is covered by insurance because it is not Standard of Care. 

     

    PS: I agree with Hopeful's advice of giving us more info regarding your Dad's cancerous prostate.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Jess

    Your father needs to have a copy of the results of all tests, which he will need as he speaks with various specialists, and discuss at this forum. Simply contact the uroogist office to obtain this informaton,; the pathology report, PSA history and the results of any other diagnostic tests.

    I agree with Old Salt, prostate cancer can be multifocal, and the current technology is not advancedd enough to detect small cancer lesions.

    The cost for MRI guided FLA runs about 25K. It is not covered by medical insurance.

    Please post information from your fathers tests. We can help.

    Please be advised that PCa is very slow growing, and your father will have time to research, so a decision can be made that he will be comfortable with.

    We can answer most questions that you may wish to ask.

    There are local support groups that you and he can attend that provide a wealth of information. Google ustoo....this organization sponsors local support groups worldwide, to find one near you.

    Also family members are more likely to develop both prostate and breast cancers, so all need to eat heart healthy. The women in the family need to have those mamograms, and the men need to be monitored. A PSA at 35 as a benchmark, then regular monitoring by the GP at 40.

     

  • Jess4566
    Jess4566 Member Posts: 15
    So far what we know is that

    So far what we know is that it's stage one prostate cancer. He has a Gleason score of 7 but unsure of the order. He tested postive for cancer in 4 of the 10 samples. His PSA has slowly risen from a 1.9 to, over a course of six years, a 8.74. His free PSA tested 14%. At this moment, this is all we know  I know every surgey has its risks and quirks. Am I sure that this procedure will get all the cancer out? No. Even with radial surgery it has been proven you are still cancerous (based on the free psa that is still circulating in your system that was not, and can not, be removed from your body). But I believe it is best option (in terms of making sure he has all his functions). I also believe radial surgery should be the absolute last resort for any man who has prostate cancer. But thank you for the words, anything helps. I am looking at hifu as well. Has anyone heard of treatments that help strengthen your body's antibodies to fight the cancer?

     

  • Jess4566
    Jess4566 Member Posts: 15
    I am also looking for people

    I am also looking for people outside of the USA who had this treatment done. I know laser ablation is relatively new here. But if I can collect data from other countries that had this treatment for longer than the USA would be great. I am unsure how to do that. I find very little on the net and I would prefer if I could talk to a person who had this surgery done many years ago. 

  • tpelle
    tpelle Member Posts: 184
    Jess4566 said:

    So far what we know is that

    So far what we know is that it's stage one prostate cancer. He has a Gleason score of 7 but unsure of the order. He tested postive for cancer in 4 of the 10 samples. His PSA has slowly risen from a 1.9 to, over a course of six years, a 8.74. His free PSA tested 14%. At this moment, this is all we know  I know every surgey has its risks and quirks. Am I sure that this procedure will get all the cancer out? No. Even with radial surgery it has been proven you are still cancerous (based on the free psa that is still circulating in your system that was not, and can not, be removed from your body). But I believe it is best option (in terms of making sure he has all his functions). I also believe radial surgery should be the absolute last resort for any man who has prostate cancer. But thank you for the words, anything helps. I am looking at hifu as well. Has anyone heard of treatments that help strengthen your body's antibodies to fight the cancer?

     

    Less than 0.1 PSA, 15 years after Radical

    My radical open prostate surgery was over fifteen years ago. No further treatment.  I was age 71, now 86.  PSA was 3.6; Gleason was 4+3 or 7; Staged at T1-T2.  Decided on surgery without much research. (Don't remember the post-surgery readings).  One nerve bundle saved.  Results:  PSA has been <.1 ever since; 2.3 average Depends pads per day drippage the first ten years; issue solved with an AMS800, past five years; erectile disfunction without treatment. Primary goal was to get rid of the cancer.  Satisfied with my selected option.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    .

    Jess, Is the pathology results available to you, or only your father? Will you have this information available to you?

    In order for you to get an answer about focal treatment, more information is required. For example, of the cores that were positive for cancer, what is the involvement, that is what percent of the cores are cancerous.  The extent of cancer will affect the outcome. 

    By the way MRI Focal laser ablation is not a surgery.

    As far as HIFU, there is targeted HIFU and HIFU for total prostate, which has 100% chance of ED, and is generally done as a salvage treatment.

     

     

     

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    Gather more info

    Hi,

    Sorry to hear about your Dad's cancer but now is the time to start doing your homework.  You need to find out where the cancer is located in his Prostate(close to the edge or deep inside) and the grade(3+4 or 4+3).  Your doctor(s) should reccomend the tests to pinoint it's location.  This can lead you as to how much time you have to get treament and what kind of treament to choose.  Keep us informed on updates of info.  People on this board have had most if not all of the treaments that you may consider. Keep an open mind and study several of the successful treament options and their side effects.

    Dave 3+4

  • Jess4566
    Jess4566 Member Posts: 15
    Has anyone tried immune

    Has anyone tried immune therapy to fight cancer?

  • hotstox
    hotstox Member Posts: 4
    tpelle said:

    Less than 0.1 PSA, 15 years after Radical

    My radical open prostate surgery was over fifteen years ago. No further treatment.  I was age 71, now 86.  PSA was 3.6; Gleason was 4+3 or 7; Staged at T1-T2.  Decided on surgery without much research. (Don't remember the post-surgery readings).  One nerve bundle saved.  Results:  PSA has been <.1 ever since; 2.3 average Depends pads per day drippage the first ten years; issue solved with an AMS800, past five years; erectile disfunction without treatment. Primary goal was to get rid of the cancer.  Satisfied with my selected option.

    Thanks tpelle

    My situation iis similar to what yours was at 71.  I have a 4-4 targeted thus 2 hits on cancer out of 15.  PSA 4.5. Have decided to get the surgery done. Thank you for your input.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Jess4566 said:

    Has anyone tried immune

    Has anyone tried immune therapy to fight cancer?

    Father

    Jess,

    I have read all of your posts and responses above. I too am sorry about your dad's diagnosis, but do be aware that early-stage PCa is probably the most treatable of any organ cancer.  And almost certainly the most indolent (slow-moving).  Survival long-term is the norm, and even advanced metastatic cases (which almost definitely your dad does NOT have) have men survivng often ten years or longer. Compared to many other cancers that kill in a few months, this is an eternity.

    It seems to me that you are fixated on fringe therapies, modalities that are not mainstream.  You also speak of "researching" results from foreign countries.  Such a project would take even major biomedical research institutions with teams of PhDs and specialized computer systems many years to compile and properly analyze.  Ancedotal evidence, this or that man claiming this or that result, is not scientific in any manner, and counts for nothing statistically.

    What IS known in American and international medical science to be curative (the ONLY two things) are radiation therapy (there are several forms of curative radiation dellivery) and surgery.  Nothing else.   

    Against PCa (UN-like many other cancers), chemo and hormonal therapy (HT) are pallative only.  HT often dramatically extend life and also gives good quality of life in most cases, but is ordinarily only employed against metastatic disease.  Chemo is pallative also, but is harsh with severe side-effects, and seldom adds more than a year at best to metastatic patients.

    PCa is among the most difficult to detect on any imaging system.  PET and CT are seldom of value in spotting PCa, but if the doctor recommends them, by all means go ahead. A negative PET and/or CT do not prove minor involvement, and do not even prove lack of metastasis.  Most cases of PCa, even metastatic, show NO SYMPTOMS, or if there are symptoms, they are the same as what enlarged prostate cause, and are often dismissed as such (frequent urination at night, difficulty in emptying the bladder, occasionally some sexual dysfunction). Even early Stage 4 PCa virtually never causes the patient any pain.

    With a PSA approaching 10, and numerous cores positive for disease, he is probably not suited for Active Survellance (AS), but I am not well-read in that approach.  A few of the men here are, and share priceless information.

    I would have you do what most men do, and what is almost universally recommended here and inmedical journals:  Speak to several doctors, including surgeons and radiation oncologists.  At some point a light will go off in your dad's head, he will bond with whichever doctor or treatment, and decide "This is right for me."  Confidence with the technique and the individual doctor decided upon yield serious peace of mind and confidence.   I wish you both good luck, but very likely, he can achieve full remission fairly readily,

    max

  • Jess4566
    Jess4566 Member Posts: 15
    My dad is 58 years old, he

    My dad is 58 years old, he doesn't smoke and he doesn't  drink. He has shown no symptoms of prostate cancer expect for the increasing psa levels. Still doesn't. It is localized only to the left side of the prostate. 4 out of 10 cores tested postive. Of the 4, two scored a 3+4=7 and the other two scored a 3+3=6. We aren't set in stone as what we should do as of now. We have been talking to many doctors and getting their opinions. Another option, maybe, is doing immune therapy. Has anyone done this? What were your scores? Thank you for your words. I will continue updating as we travel down this horrible road. 

  • Old Salt
    Old Salt Member Posts: 1,284 Member
    Immunotherapy?

    Immune therapies are typically used for late-stage prostate cancer patients. Based on the data provided, I don't think your Dad would qualify. Moreover, immunotherapies are still rather 'experimental' with few long-term data.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Diagnostic tests

    Your father needs to know where he stands. ...this is the first step...before determining various treatment choices.

    What is the percent cancer in each of the cores that are 3+4=7

    Recommend that your father obtain a second opinion by a world class pathologist...there is a difference between pathologist and equipment. Many men here use John Hopkins...without insurance the cost is about 250 dollars.

    Highly recommend that your father have a T3 MRI, which can reveal if there is extracapsular extension, that is if outside the prostate, and the potential extent within the prostate; one lobe or two, possibleaggressiveness and volume within the prostate.

    Read research. attend local support group(s) google ustoo. they sponsor local support groups worldwide.

    come back with the percent cancer in each of the cores that are 3=4 and any other pertinent information from the pathology.

  • Jess4566
    Jess4566 Member Posts: 15
    edited March 2018 #17
    Pathology

    Ok guys, I have the pathology report. Tell me what you think. 

    Left lateral base: Gleason score of 7 (3+4) grade 2. Less than 5 percent of tumor in core. Perineural invasion present. (How do they know they there is PNI? How do they see its tracking a nerve?) No ENE or lymphatic vascular invasion.

     

    Left base: Gleason score of 7 (3+4) grade 2. Tumor involves approximately 20 percent of the core. PNI present. No ENE or lymphatic vascular invasion.

     

    Left lateral mid prostate: Gleason of 6 (3+3). Group 1. Tumor involves 20 percent of the core. No ENE, PNI, or lymphatic vascular invasion present. 

     

    Left mid prostate: Gleason score of 6 (3+3) group 1. Tumor involves less than five percent of core. No ENE, PNI, or lympharic vascular invasion.

     

    The right side looks good, no tumors found. The left lateral and apex also have no tumors. All the tissue is white and soft. Is that good? Does that mean somewhat healthy?

    The doctor discussed with him his options: active surveillance, radial prostatectomy, radiation therapy, cryoablation, and HIFU. My father is looking at laser ablation or the nanoknife. I know the doctor didn't say those...

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Yes yes

    ...look into Stereotactic Body Radiation Therapy (SBRT)

     

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5679773/

  • Jess4566
    Jess4566 Member Posts: 15
    What are the side effect from

    What are the side effect from that?

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Here you go

    The side effects are minimal. Basically one can be treated, and go about his business after each treatment. There are either four or five sessions depending on the doctor to administeer this radiation.

     

     

    "They also report the following toxicity data:

    • Late rectal toxicity:
      • Grade 2: 4 percent
    • Late urinary toxicity:
      • Grade 2: 9.5 percent
      • Grade 3: 1.9 percent
      • Grade 2 or 3: 6.9 percent for the lower radiation dose vs. 13.2 percent for the higher dose.
    • Patient-reported bowel and urinary quality-of-life (based on EPIC questionnaire data) declined at 1 month then returned to baseline by 2 years; sexual quality-of-life declined by 29 percent at last follow-up.

    These are clearly excellent results for any kind of radical therapy. The authors conclude:

    These long-term results appear superior to standard IMRT with lower cost and are strikingly similar to HDR therapy."

    STUDY RESULTS

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

  • Jess4566
    Jess4566 Member Posts: 15
    Thank you, I am looking into

    Thank you, I am looking into this as well. If anyone has done this please post your experience