Got the news, big C two weeks ago...

CharlesS
CharlesS Member Posts: 1
in Prostate Cancer #1

Hi, I'm 58 and in good overall health. In December I went to my primary care physican for my routine yearly physical. No new complaints. Every lab value was normal except for my PSA which was 4.69. My DRE is unremarkable. My doctor referred me to a urologist, however made the comment that it is probably prostitis. The urologist ran several variations of the PSA, and each one validated the original number. He suggested a 12 needle biopsy. At first, I refused. My dad had PSA's in the 8 to 10 range from my age until his death from a stroke at age 80. He underwent a number of biopsies and was never diagnosed with cancer. I figured that this was more of the same wild goose chases. My urologist finally talked me into the biopsy. During the procdure, the untrasound shown nothing abnormal. My prostate is slightly enlarged which could explain the elevated PSA, and the doctor stated that he will be suprised if there is any cancer. A week later he called with the news. Postive for adenocarcinoma on the right side 3 out of 12 samples. The Gleason score is 4 + 3 = 7.  I have an extensive medical history, but function very well. I have undergone four spinal fusion surgeries from a back injury, and have a lot of nerve damage. The nerve damage is severe enough that my left foot became weak, a tendon popped, and I underwent a tendon transplant surgery. I survived a very large acoustic neuroma brain tumor in 1999. The tumor was located on my brain stem, and when diagnosed it was in iminate danger of shearing off my brain stem. I underwent FSR, Fractionated Stereotactic Radiosurgery in a pilot program at Johns Hopkins Hospital in Baltimore and have been in remission since that time. The tumor cost me the hearing on the left side, and my balance function. I learned to balance by eyesight.

Even with all of these problems, I managed to earn a four year degree in nursing, a second four year degree in psychology, and a Master of Social Work. I work full time as a RN at one hospital and part time at another. I work an average of 70 hours a week and am what people call an adrenilin junky. I am right the middle of any emergency, anytime, all of the time. I am also good at it! I love this stuff! Since I did not earn my education until my mid 40's I am still in the process of working hard, paying off a home, paying off student loans, and getting ready for retirement. If we get derailed at this point, finanicaly we cannot recover and ensure ourselves an independent retirement in a few more years.

Now is the part where I have to decide which treatment suits my situation. Since I have had three hernias repaired and am full of surgical mesh, my doctors say that I am not a canidate for robotic surgery. I am also against surgery period. I have undergone so many surgeries in my lifetime that I think the doctors should have installed zippers. The doctors and I are leaning towards either IMRT or  the Proton Beam procedure. A good IMRT service is offered in our town, however they use the ultrasound approach rather than the leaf method. The doctors believe it is better. The Proton Beam procedure is offered 100 miles away, so it is a commutable distance. Since I am 58, still working my butt off, and have had zero physical symptoms, I would like to minimize the amount of disability caused by treatment. The wife and I enjoy a very active sex life, four to five times a week without fail. We joke that with all of the health problems I have endured, we have been lucky that one thing works without fail. I am also concerned that the amount of nerve damage I have from the back injury may predispose me to be particularly suceptable to problems from the prostate treatment.

Now is the time to select an appropriate treatment. All of the doctors want to augment my treatment with Lupron, a hormone therapy which they say will enhance the cancer kill rate and increase my 20 year survival rate by 5%. I am willing to endure anything short term, so this seems worth the inconvinence. The folks at the Proton Therapy center say that with thier treatment I have a 95% chance of no perminant disability. The radiation oncologist who provides the IMRT says that my chances of avoiding permnant disability is between 70 to 80 %. Since the Proton Therapy center is a chain of 14 centers around the country and they are paying for a 200 milion dollar piece of equipment, the thought has crossed my mind that the data may be slanted to make the Proton Therapy appear better then it actually is. Overall research to date does not show one treatment as significantly better than the other one is. Th million dollar question is if the Proton Therapy is better than the IMRT? Does anyone have some insights to this question? Thanks in advance. Charles S.

 

  

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #2
    diagnostic tests, second opinions, comments

    Dear Charles,

    I am sorry for your diagnosis.

    There are various questions that need to be answered, and concerns that need to be addressed so you can optimize your treatment decision.

    You want to have a good idea of how extensive and aggressive the cancer is; is it localized in the prostate.

      

    So you want to know what  the involvements of the cores that was positive, that is what was the percent of the core that was cancerous?  This information is found on the biospy report.Please let us know. (By the way you need to have a written copy of all results of tests, office visits so you can share with other doctors as required.)

    With regard to the results of your biopsy, since interpreting the gleason scores are subjective, in my opinion it is critical to have a second opinion of your results by a world class pathologist that specializes in prostate cancer so that you are not under or over treated.

    Here is a listing for your information.

    WORLD CLASS PATHOLOGISTS and Labs, from the book “the Primer on Prostate Cancer”

    David Bostwick (Virginia) 800 214-6628

    Francisco Civantos (FL)  305 325-5587

    Jon Epstein (Maryland) 410 955-5043

    David Grignon (Michigan)  313 745-2520

    John McNeal(California) 650 725-5534

    Jon Oppenheimer (Tennessee) 888 868-7522

    Dianon Laboratories 800 328-2666

    UroCor 800 411 1839

    (UroCor and Dianon have recently merged into one company)

    MRI 

    There is a multiparametric MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, any evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. 

    In my layman’s opinion it is advisable to have such a test before any surgery or another active treatment. If the cancer is outside the prostate a localized treatment choice such as surgery  would not be the best choice for treatment since treatment using other active treatment types will still be required, and the side effects of these treatments  are cummulative.

    ----------------------------------------------------------------

    Proton therapy

    I’ve read that Proton is no better than IMRT and costs a lot more. To my knowledge there is nothing published that shows proton to be better tjhan IMRT.

    If the cancer is localized, or slighty outside the prostate SBRT is a valid choice,  several at this thread have done SBRT; one form of deliverance is Cyberknife. Here is a discussion site for this treatment type that you may wish to look at. cyberknifepatientforum.com There are doctors that post there that can answer specific concerns that you may have. If this treatment is appropriate for you no hormone therapy is required before treatment.

    Surgery generally has greater side effects than other treatment types. It is for localized cancers. You stil need to get a better idea if you cancer is localized.

    There are face to face support groups in various parts of the country.. one organization USTOO that you can look up on the internet may show a localized chapter....some support groups are knowledge based while others are emotional based.

    Read, research, books, internet, etc

    You will do fine...prostate cancer is highly treatable.

     

     

     

     

     

     

     

     

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    Proton

    Charles

    Welcome to the board.

    The investigations you are doing on treatments for PCa is the start for a good outcome. Researching is the best we can do before any commitment and together with the results of proper testing (the latest techniques) and the second opinions obtained from professionals in each field of treatment, sets us in the good direction. In this forum there are threads with survivor’s experiences in Proton therapy which may be of interest to you. Here are some links;

    http://csn.cancer.org/node/225419
    http://csn.cancer.org/node/261040
    http://csn.cancer.org/node/213724

    Best wishes in your journey.

    VG 

  • shubbysr
    shubbysr Member Posts: 87
    #4
    My scores were the same as yours!

    Five years ago, at age 55 I went down the same road as you, with identical Gleason scores! May 1, 2009 I had DaVinci surgery.

    Unlike you , I am healthy otherwise. Looking back at all the research and talking that I did, I would not have chosen surgery, probably "Wait And See". Like you, my wife and I had a great sex life. Today I have incontinence of urine and no erections at all. Yes, I have tried medications, other treatments for ED to no avail.

    My opinion, leave it alone and enjoy the rest of your life. you have enough on your plate.

  • Beau2
    Beau2 Member Posts: 261
    #5
    shubbysr said:

    My scores were the same as yours!

    Five years ago, at age 55 I went down the same road as you, with identical Gleason scores! May 1, 2009 I had DaVinci surgery.

    Unlike you , I am healthy otherwise. Looking back at all the research and talking that I did, I would not have chosen surgery, probably "Wait And See". Like you, my wife and I had a great sex life. Today I have incontinence of urine and no erections at all. Yes, I have tried medications, other treatments for ED to no avail.

    My opinion, leave it alone and enjoy the rest of your life. you have enough on your plate.

    Good point on the AS

    shubbysr,

    If your uro was like my uro (five years ago) he did not even bring up the subject of AS. I brought up Watchful Waiting, but the subject died a quick death. I've got to admire guys like Hopeful who researched it five years ago and who have stuck with it over the years. I do not think I would have had the moxy. So much more is known about AS now. Based on this knowledge, I do not see why guys choose to immediately treat (surgery or radiation) low grade PCa. Better to do AS first and then do treatment if it is needed.

    Having said that, I do think AS is having a financial impact on those businesses in the practice of treating PCa. Based on their increased avertising in Denver I would guess business is not good. ANOVA has had an advertisement on every Rockies game I have watched on TV this year.  Littleton Oncology has a radio spot that claims brachytherapy is better than AS .... they don't give a reason it is better, they just make the statement ... kind of like a political advertisement.

    Your advice was spot on!

    Best wishes and good luck.

     

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #6
    CyberKnife is "Better" than PBT and IMRT

    I'm biased because I received CyberKnife (CK) treatment but I only decided on receving the treatment after doing a lot of research on the options at the time (2010), which included PBT and IMRT.  However, I and a number of other men on this forum have received this treatment w/o any side effects whatsoever, which I believe is sufficient ancedotal evidence of its effectiveness for men w/PCa who are eligible for the treatment, which includes men (like you) w/a PSA less than 10 and a Gleason 6-7 and no indication of any extracapsular extension of the cancer beyond the prostate.


    FWIW, CK has been shown to have essentially the same "success" rate as PBT and IMRT but the level of precision in the delivery of CK is much better than both PBT and IMRT because the program can control the placement of the radiation delivery to the sub-1mm level in all directions by movement of the treatment arm AND the table.  The equipment can also detect both body and organ movement during treatment -- allowing the operator to suspend treatment if the movement is excessive -- which could result in the improper placement of the radiation during treatment that might cause undesireable side effects.  Treatment w/CK can also be completed in just 3 days of treatment over 6 days.


    As I recall, when I looked into it, PBT requires you to be placed on a fixed table in a body mold so that you do not move during the treatment and they also insert a water filled balloon in your rectum before each treatment in order to protect the rectum from excessive radiation toxicity during treatment. The machinery used to deliver PBT was noted for sometimes causing "hot spots" resulting in excess radiation delivery to specific locations for too long a duration, which indicates the lack of flexibility in the angle of delivery of the treatment. You also have to be able to move near the PBT treatment center during the treatment program, because a series of daily treatments is required for 4-8 weeks depending on the radiation dosage used, which can be inconvenient because of the limited number of PBT treatment centers available.  Of the 3, IMRT is the oldest form of radiation treatment.  It is often used for PCa patients who have suffered post-surgerical failure.  It is a fairly precise method of radiation delivery but not as precise as either CK or PBT and is the most likely to result in undesireable side effects.  Like PBT, IMRT also requires as many as 40 treatments over an 8 week period.   However, IMRT treatment is more widely available than PBT and should be available where ever you are located.

    Of the 3, CK is the most precise in terms of radiation delivery and, as a result, is the least likely to cause negative side effects, like ED and urinary incontinence.    It can also be delivered in just a week's time, instead of up to 4-8 weeks for PBT and/or IMRT.  So, it will not interfere with your lifestyle or work schedule.  You also do not have to be fitted in a body cast and do not have to wear a water filled balloon in your rectum during treatment as you do w/PBT and as is being recommended for treatment w/IMRT too, which makes it the easiest and most comfortable of the 3 treatments to undergo.


    Do your own research on this.  If you do, I think you'll choose CK too.  Good luck!

  • hunter49
    hunter49 Member Posts: 247 Member
    #7
    I was diagnosed at 49 with a

    I was diagnosed at 49 with a 3+4 grade.  I had a second opinion of the slides at hopkins which confirmed grade.  Post surgery it was in both lobes and a 4+3.  I am fine so far issues with errection but none with incontinence.  You have a serious grade tumor and no doctor would recomend AS. If the tumor has not escaped the gland you have a great shot at a total cure.  You should look into a detail MRI to get a better idea but AS in my opinion is not an option

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