Not yet what to do...

mananao
mananao Member Posts: 13 Member
edited January 18 in Prostate Cancer #1

Good day, I am living as a permanent resident in the Philippines for now 15 years with ma family. I am 69 years old and been tested prostate cancer in last August. Had all the test made and in my possession. One Uro. (from CEBU city) did the biopsy (gleason 7) and first PSA 14 ,prescribed me with bicalutamide 50 mg for a month, PSA test 4.6 . I get another opinion by visual from a Manila Uro, he told me to stop this medicine (Bicalutamide) and have robotic assisted surgery there in Manila after checking my tests (Biopsy, MRI of the pelvic and prostate, heart and blood).

My insurance pay for the surgery. I wanted to know if this can be done or there is other way less invasive. I can also post you my tests if needed. I have side effects with this medicine, painful nipples, problems now to sleep after 3 weeks without it.

I will need some advises what is the real story for the control of my cancer (they answer is: "up to you!") Surgery? medication? others ways? I have an appointment for surgery second weeks of January , it give me time to think ...Apparently the cancer still in the prostate.

Thank you . Alain

«1

Comments

  • Old Salt
    Old Salt Member Posts: 1,009 Member

    Uros tend to recommend surgery; it's what they know.

    But you should really look into radiation therapies (there are several) before deciding. You have some time to study and make up your mind while on hormone therapy.

  • mananao
    mananao Member Posts: 13 Member

    Thank you, my insurance help only for hospitalisation at 100% but not for my travel, radiation you have to go every day as an out patient, insurance is 65% only. The Uro from Manila told me to stop bicalutamide 50 mg, (used for 2 months) have a MRI, see a Cardiologist and send my Biopsy slide, what I deed 3 week ago, not sure why he said that... took another PSA yesterday, still at 4.6mg.

    Past one week I can not sleep at night, only from 5am to 8 or 9 am, I can not stay in bed at night, stress? effect of the bicalutamine withdraw?

    My local Doc told me that 69years old is a little risky for prostate surgery? is that so?

    What it is better Uro or oncologist? I am thinking going for an other opinion (#3)

    Somme more input will be much appreciated. Alain

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    Hi,

    Maligayang pagdating

    I think that the uro from Manila is correct. I wonder in which hospital is he working.

    His request to stop the antiandrogen bicalutamide is to get a "clean" PSA (bicalutamide masks the real value). The MRI makes part of the diagnosis process to have an idea of existing spread.

    He wants to get a second opinion on the biopsy slides to certify the Gleason rates and score (4+3 is riskier than 3+4). At the same time he can confirm the volume (%) of cancer and the number of positive cores.

    The role of a Cardiologist may be to check if the hormonal treatment (bicalutamide +) is proper to you.

    Probably you meant to write PSA of 4.6 ng/ml. Surely it is lower than the initial 14.0 ng/ml, but one doesn't know how much of that is due to cancer or to benign hyperplasia.

    As oldsalt suggests above, you should investigate other options of treatment. Typically, low risk contained cases are recommended for surgery but radiation can also achieve the same results and may be the best choice when one is in doubt of containment.

    The side effects differ so it is wise checking which ones are preferred. Typically, patients older than 75 are not recommended for surgery but it all depends on the overall health status of the person.

    Hormonal treatment that would include more than a single blockade (antiandrogen plus LHRH agonist) does not cure but is known to slower the advance of the bandit during a period that can last years. Surely it has its side effects and risks too.

    Apart from the MRI you may also get a Bone scan to complete the diagnosis.

    In 2002 I did some scans at Manila St Luke's hospital. They were famous at the time for diagnosing and treatment of prostate cancer. Makati hospital was also recommended.

    In your shoes I would get a second opinion at a big hospital like St Luke's, and check about the assistence they provide, such as accommodation to patients that live far away but want IMRT, if it becomes your prefered choice.

    Best wishes,

    VGama

  • mananao
    mananao Member Posts: 13 Member

    Hello et merci VGama, it is good to chat to relieve some stress, all my tests where made in Cebu city where I visited an old Uro with antique equipments for my biopsy,got infected with UTI and 3 weeks of antibio. also the one that prescribed bicalutamide and PSA tests.

    My insurance pay only direct St Luke hospital global city, so I contacted them a month ago, they directed me to an Uro truth visual consultation, it was the one who told me to stop that medecine and have robotic assisted surgery with him, to have an IRM scan and check for my heart before surgery, also no need bone scan because my PSA is lower than 20mg... Package for for surgery assisted by robotic is 5 days hospital and not cheap ($15000)... I just have to pay for the travel with my wife. I guess surgery is painful for a while but maybe better than long and costly radio therapy or hormonal treatment and at the end a need of surgery. Regards,Alain

  • Clevelandguy
    Clevelandguy Member Posts: 808 Member

    Hi,

    Good advice from the survivors above. The decision between surgery and some form of radiation therapy is up to you like your doctors said. Both surgery and radiation have side effects sometimes mild sometimes severe. If you go the surgery route make sure your surgeon has done hundreds of robotic assisted surgery’s as qty usually equates to success. Great doctors+great facilities = great success. I have included a link to get you familiar with the various types of treatments.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    edited December 2022 #7

    Hi again, Alain

    Are you French?

    I am Portuguese. Back in 1998 I stayed in Manila on assignment from Japan for a project in Mindanao that took 5 years. In 2000 was diagnosed with PCa in Tokyo where I obtained treatment. The follow up of my case was done at John's Hopkins, USA, with visits at their hospital in Singapore. You can also consider that hospital for treatment if not satisfied with the service in Manila.

    Regarding your case, I think that you should visit St Luke's to have a proper consultation before making a decision on the treatment.

    Treatments for prostate cancer are not easy walks in the park. It is serious and involves risks and side effects that will prejudice your quality of life.

    You should get the opinions from both specialists for surgery and radiation and have those biopsy slices checked by a pathologist at St. Luke.

    A PSA lower than 20.0 ng/ml does not confirm negative metastases in bone. Agressive Gleason rates of 4 may produce little volumes of PSA serum.

    You should also inquire on the insurance scope of coverage before any decision. Typically insurances cover both types of treatments, including exams and tests done before and after the intervention. Some have limits for the length of hospital stays.

    You should investigate on the several types of radiation treatment. IMRT is the longest but SBRT is done in just 5 days. Brachytherapy takes only one day plus two on hospital stay.

    Hopefully you find a solution to your case.

    Best wishes,

    VG



  • mananao
    mananao Member Posts: 13 Member

    Yea I am French, but away from France since 1983...

    Not sure how you guy control your sleep and stress, I am awake all nights for about a week, go to bed from 6 am to 6/8am! so tired. maybe stress.

    Must be some statistics between the 3 different treatments, rite? I am not docter, so I need to know what would be best for me to take a decision..

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    Yes, I think you are experiencing a mixture of stress because of dealing with the unknown, together with the side effects of bicalutamide.

    The best is to educate on the matter by reading about the various modalities, their benefits and side effects and prepare a list of questions for the doctor you may be meeting in your next consultation.

    In any case, you need a clinical stage (obtained via exams and tests) to decide on a treatment. That depends mostly if you have a contained case, or a localized not contained or far metastatic case.

    The MRI and Bone scan are important items in the diagnosis process. The number of positive cores in the biopsy and their location as well as the pathologist opinion on his findings (such as extraprostatic involvement, etc), will help the urologist in drawing a clinical stage.

    I do not know if in Cebu there are proper specialists for prostate cancer but I imagine that the uro recommending you to start with hormonal therapy is limited in knowledge. ADT is recommended for very advanced cases or to older patients (>80 y/o) or to those that cannot sustain a radical treatment.

    Surely, bicalutamide can give you time to educate on the matter postponing a radical treatment.

    Make arrangements for meeting specialists at St Luke's, take copies of all tests done in Cebu, including the original biopsy cores (you can get them from the hospital attending you), and the results of a MRI and Bs. Then discuss with the doctors using a List of Questions. I recommend you to be accompanied with your wife and probably tape the conversation with the doctor.

    To avoid traveling too many times, make prior arrangements for a scheduled MRI and Bs that could be done at the same facility in two days, obtaining the results (typically one week later) by e-mail.

    Please note that doctors do not substitute us, the patient, in making a decision. They check, analyze and recommend based on their expertise and experience. We must be prepared to decide and absorb the consequences from such decision.

    I am not a doctor. Survivors in this forum help newbies with comments based on their experiences.


    Best wishes and luck in this journey.

    VGama

  • mananao
    mananao Member Posts: 13 Member

    Thank you for all valuable answers.

    I have all the tests down 2 months ago (MRI, Blood, heart for surgery)and sent all to the uro in St Luke and had two visual consultations with him, he recommended to have surgery. I have the biopsy slide with me , he asked me to send them for a second opinion in st Luke's, I will send them first week of January. I asked him if I do need a bone scan the answer was no because my PSA was much less than 20.... (14} what can I say? on the mid time I reserved a spot for the 10 January for surgery, because they are busy, but I did not decided yet at 100%. I want to see another Uro or maybe an Ontologist?all this give me headaches. Not sure if radiations are better than surgery. I guess after many years listening the people here you may have an idea. I was reading somewhere that with surgery you can live longer??

    As for now i am very tired without sleep.

    Where do you live now? Take care.Alain

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    Hi Alain,

    I am retired and live now in Portugal. I am acquainted with Asia because I lived 30 years in Japan working for a big steel manufacturing company (engineering) that had offices in several countries including Manila.

    In my times, St Luke's was the best hospital with the best specialists to treat PCa. Most of the professionals have studied and trained at big hospital universities in the United States.

    The options to eliminate PCa are basically surgery or radiation. Chemotherapy and hormonal treatment are palliative, do not eliminate the issue but manage some control extending the period of life, so that the patient may die (many years later) of other causes.

    Low risk (Gleason 6 and less than two positive cores and low initial PSA) contained cases have the highest rates of success and are usually treated with surgery. This may be the reason why some think that "...with surgery you can live longer".

    However, recomending surgery for intermediate cases (Gleason 7), depend much on the results of the biopsy, unmasked PSA histology, image studies and symptoms.

    One may think it to be contained but it may be not. For such cases radiation therapy may be a better choice as it covers a wider area of attack (the whole gland and surrounding tissues). Surely enough, surgery is also recommended but the success is not as assured as in low risk cases.

    I wonder what it is written in the MRI and biopsy reports. How many positive cores and its location?

    In your shoes I would get the opinion from an independent radiotherapist and rechedule surgery after being confident that such is your preference.

    Regarding the side effects, incontinence and erectile disfunction is common in surgery. Colon issues and cystitis is common in radiotherapy.

    Remember that cancer doesn't spread overnight. You have time to get second opinions, check the efficiency of the doctors treating you, the facilities and get in-line with the insurance matters.

    Do not get lose. Try doing things coordinatly and timely.

    In the end you will do well.

    Best

    VG

  • mananao
    mananao Member Posts: 13 Member
    edited December 2022 #12

    I like Portugal, been there in 1980 in Algarve and up to Porto. I had a friend Portuguese in South Africa where I was in tourism business from 1983 to 2008.

    I do not understand anything in medical writing , I can attach the result here, not sure it is possible if you know how to read them 🤓

    I am thinking going to Cebu city the 18 Dec, when my daughter get school vacations and visit another Urologist or ontologist, not sure what is best.

    This is the Uro in St Luke I had a visual consultation and recommended surgery:

    SEFINO CORTEZ

    CASTILLO

    UROLOGY-ENDOUROLOGY

    UROLOGY-LAPAROSCOPIC UROLOGY

    UROLOGY-ROBOTIC AND MINIMALLY INVASIVE UROLOGY

    UROLOGY


    HMO Accreditation:

    • ASALUS (INTELLICARE) - GC
    • ASALUS (INTELLICARE) - QC
    • ASIANLIFE & GENERAL ASSURANCE CORPORATION - GC
    • ASIANLIFE & GENERAL ASSURANCE CORPORATION - QC
    • AVEGA MANAGED CARE INC. - GC
    • AVEGA MANAGED CARE, INC - QC
    • CARITAS HEALTH SHIELD, INC. - QC
    • COCOLIFE HEALTHCARE - GC
    • COCOLIFE HEALTHCARE - QC
    • EASTWEST HEALTHCARE - GC
    • EASTWEST HEALTHCARE - QC
    • EASTWEST HEALTHCARE INCORPORATED - QC
    • FLEXICARE (HEALTH FIRST) - GC
    • FLEXICARE (HEALTH FIRST) - QC
    • GENERALI PHILIPPINES - GC
    • GENERALI PHILIPPINES - QC
    • HEALTH MAINTENANCE INC. (HMI) - QC
    • HEALTH PLAN PHILIPPINES, INC. - GC
    • INSULAR HEALTH CARE, INC. (I-CARE) - QC
    • KAISER INTERNATIONAL HEALTHGROUP, INC. - GC
    • KAISER INTERNATIONAL HEALTHGROUP, INC. - QC
    • LACSON & LACSON INSURANCE BRKS - QC
    • MAXICARE HEALTHCARE CORPORATION - GC
    • MAXICARE HEALTHCARE CORPORATION - QC
    • MEDASIA PHILIPPINES - GC
    • MEDASIA PHILIPPINES - QC
    • MEDICARD PHILIPPINES, INC. - GC
    • MEDICARD PHILIPPINES, INC. - QC
    • MEDICARE PLUS INC. - GC
    • MEDICARE PLUS INC. - QC
    • MEDOCARE HEALTH SYSTEMS - QC
    • PHILHEALTHCARE, INC (PHILCARE) - GC
    • PHILHEALTHCARE, INC (PHILCARE) - QC
    • VALUE CARE HEALTH SYSTEMS, INC. - GC
    • VALUE CARE HEALTH SYSTEMS, INC. - QC


    [Content removed by CSN Support Team]

    Hoping you live in a warm place 🏝️

    Good day. Alain

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    edited December 2022 #13

    Hi Alain,

    Thanks for sharing the info.

    It looks like that Dr Sefino Cortez works in the so called "Medical Tourism", typical in the Philippines and procured by many as one of the top destinations for getting treatment because of its inexpensive yet world-class facilities and skilled doctors. Some insurances present packages covering travel and accommodation expenses.

    However, the experience of these doctors is not assured. In PCa robotic surgeries (DaVinci) it is common to read that the surgeon should have 500+ interventions in his belt to be considered a well experienced doctor.

    Regarding the biopsy report, they describe it to be of 12 needles (6 of the right lobe plus 6 of the left lobe), and diagnose it as: RIGHT AND LEFT PROSTATE TISSUES: ADENOCARCINOMA, GLEASON 7 (3+4), but there is no mention on the number of the positive ones.

    Were all cores found positive?

    You must check this calling the laboratory because above 4 positive would diminish the success of a lone surgery option.

    Another important matter described in the biopsy report is the type of cells described as "...cribriform and infiltrating fused glandular tumor (Gleason grade 4)", which is linked to poorer treatment outcomes.

    Regarding the MRI report, it describes your gland as very small of 15.5 cubic cm. Is it correct?

    The typical normal size of a prostate gland is 20 cubic cm. What makes me curious is the size of the lesion they describe that is almost the same size of the total gland. It would mean that the all 12 needles were positive.(?)

    The good thing is the description on negative involvement of the Neurovascular bundle, Seminal vesicles, and Lymph nodes. They describe "No osseous abnormalities" but the MRI hardly detects lesions in bone. This is the work of a Bone scintigraphy scan.

    Overall they classify your case as PI-RADS grade 2, in which I have doubts because they consider your PSA of 4.6 ng/ml that is masked by the bicalutamide at the time you did the MRI. They should do the calculation using your original PSA of 11.32 ng/ml (August 2022).

    I think that you should continue your investigations consulting other specialists as commented above.

    Please note that I am not a doctor.

    Best wishes and luck in this journey.

    VGama

  • mananao
    mananao Member Posts: 13 Member

    Good morning, outch! you said that you are not a doctor, but i think you are better hehe, thank you for this very informative help that make me think twice before going to surgery...

    Now not sure if I am going to see another Urologist or Oncologist... and who? that so scary. This Doc Dr Sefino Cortez told me that he is doing robotic from 2010? I also contacted an Oncologist in St Luke, but they do only outpatients Radiology, that mean insurances don't pay 100% without hospitalisation.... this already reducing this choice (I guess they insure at 50% only and I have to pay for transport and acco.)

    My big problem at the moment is sleeping problem for the past week or so. (not sure what to take as I already tried few medications and natural herbs) 2 to 3 hours a nite, not enough, it make me irritable and do less to occupied myself. Wait and see. Maybe I must see a local quack doctor hehe😉 enjoy your day.Alain

  • mananao
    mananao Member Posts: 13 Member

    hello, this is the answer of Doc.Sefino Cortez after asking him some of what you where saying. I did not saw his face, but after this long answer, he may feel that, I now know more than he was thinking Lol. again thank you for helping. I also sent my slide by courier for review by a uro-pathologist as he asked. Have great day. Alain

    Good day.

    I have done more than 100 robotic assisted laparoscopic radical prostatectomies.

    Regarding your biopsy result, you may inquire from the pathology department of the hospital where the biopsy was done to regarding the number of core biopsies that were positive for prostate cancer.

    Gleason Grade 4 means that the tumor is relatively more aggressive but overall treatment outcome is best predicted based on the stage of the disease. As suggested before, I would like a review of the histopathologic slides by our uro-pathologist here in St Luke’s Medical Center.

    MRI was requested to determine the extent of the tumor whether is still confined to the prostate or has involved the surrounding organs and to check the status of the pelvic lymph nodes which are common sites of spread of prostate cancer. MRI showed 15.5 grams prostate which may be a miscalculation since normal prostate gland is 20gm. The tumor is still confined in the prostate and has not involved the seminal vesicles, the prostatic capsule and the neuromuscular bundles. There were no spread to the pelvic lymph nodes. PIRADS scoring system is used to screen patients for possible prostate cancer. In your case it is immaterial since you were already diagnosed with prostate cancer. MRI was requested to determine the stage of your prostate cancer.

    Bones are also the usual sites of metastasis of prostate cancer. Bone involvement is very rare if the PSA is less than 20ng. That is the reason why I did not request for bone scintigraphy since your PSA in only 11ng. However if you wish to have bone scan I can send you the request and have it done in Cebu.

    Given Gleason Grade 7, PSA 11 and MRI results that the tumor is still confined to the prostate and following the NCCN (National Comprehensive Cancer Network) guidelines for treatment of prostate cancer, you’re a very good candidate for RALP with bilateral pelvic lymph node dissection.

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    😆😆😅

    Well, it seems that we are on the good path. You need to get a proper clinical stage.

    Your next step is the bone scintigraphy scan plus the review and opinion on all 12 biopsy cores. If we validade the previous MRI then you can decide, once you are acquainted with the side effects. That decision surely will be your best choice.

    Your sleeping trouble may be caused by the bicalutamide. Dr Cortez has asked you to stop it so just do it. This drug's half-life is about 10 days so that you may start feeling better by that time.

    I heard that durian is good for insónias. Try finding it at the central wet market.

    Best

    VG

  • mananao
    mananao Member Posts: 13 Member

    Good morning VG. I am still a zombie for now 1 week and a half, 2/3 hours a nite , I am very tired and sleepy, but when the nite come I am already stressing . I already stopped bicalutamide the 12 Nov as asked by the Uro. Still have pain on my nipples..

    I sent the slide yesterday to St Luke for another look at it. I do not know for bone scan, as he said it is not necessary.

    Alain

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    You are living in the paradise of beautiful sandy beaches, warm greenery seas and surrounded by lovely people always smiling (I am nostalgic). You shouldn't be stressed.

    How about some jogging along the beach in the evenings followed by a swim with the little colorful fishes to relax. You can try delaying the time you go to bed.

  • mananao
    mananao Member Posts: 13 Member

    Hello all, hope this new xiting year will good for everyone .

    -Bone scan down, cancer still in the prostate.

    -Visited an Onco. for opinion, much cheaper than surgery, but follow by medications that are poison....

    -My problems for non sleeping was really with BICALUTAMIDE withdrawal after 15 days , I am ok now after stopping 2 months ago. still have pain in my nipples, and no more sweating. This medicine is really a poison hehe

    -I cancelled (for now) my appointment for robotic surgery with the Uro. in St Luke hospital, because I am waiting for more infos on radiotherapy and another reading by a Pathologist from the same hospital, and to be honest I am scared!😫 at 69 years old, specially for my wife and last kid of 13 years old that I love so much.

    -So I am still not 100% sure what to do, I am at 40% surgery and 60% radiotherapy for now, but more advises from your experiences will help.

    Have a nice and relaxing weeks. Alain

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    edited January 13 #20

    .

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    edited January 13 #21

    Best wishes for 2023.

    l am glad for knowing that you requested a second read (opinion) on the biopsy slides. Next it will be a consultation with a radiotherapist to become acquainted with the goods and pitfalls of that treatment.

    I believe that the level of diagnosis presented by you above will assure your living presence at the time your son completes the university studies and gets married. You will survive to greet your grandchildren. 😉

    Best

    VG