New to the forum

dksmith6581
dksmith6581 Member Posts: 4
in Prostate Cancer #1

 

 

 Just started to do some research on treatment for PC. Trying to decide on robitic or CK. I am leaning towards CK.

 My Gleason score is 3+3 for a 6 my PSA is .081. 2 of 12 tested positive. I don't have any of the other diags right now, will have to get them.

 After reading in here I see I did not get all the information I needed from the doctor, but his nurse lives across the street and I plan and talking to her.

 

 Does anyone here after any experince with CK or robitics providers in Colorado? 

 

 Any restrictions I should be aware of, I live in the mountains at 9500 feet and am very active, hunting, fishing, cutting firewood, moving snow (my least favorite activey). Trying to decide if I should book a Moose hunt for this fall?

 

 Thanks Dave 

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Welcome

    Dave,

     

    Welcome to the forum and sorry to read of your diagnosis.  The good news, if there is such a thing, is that from your biopsy it appears that you have been diagnosed with a very low risk form of this cancer.  You have a number of great options available to you and I hope you take the time to research them thoroughly.  You should also consider active surveillance if a doctor advises it.  That would likely be based on the percent involvement in the two positive cores.

     

    I am wondering with your very low PSA score, what prompted the biopsy?  Did you have other symptoms?

    I had CK in Southern California in 2010 and am extremely happy with the results.  No side effects whatsoever.  I'm not familiar with CyberKnife facilities in Colorado but I hope you research them and make a consulting visit.

    Please share with us the rest of your diagnosis when it is available to you and by all means, go book that moose. 

    Best wishes for a successful learning period and a stress free decision.

     

    K

  • Builder23
    Builder23 Member Posts: 29
    #3
    Welcome to the forum

    Dave,

     

    Before you make any decisions on surgery or CK educate your self on all the alternatives.  This is a great site and will help you immensely.  I am in a similar situation with a 3+3 gleason score and 7% involvement in one core.

    Because of my age and other factors we are doing active surveillence.  What is your stage?  What is your age?  What is your health?   A second opinion is always advisable plus 3t-MRI & Pet/ct scan.  I am sure you will receive a lot of input from the many knowledgeable PC survivors.

    Good Luck

    Bldr23

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #4
    Another Welcome to the Forum!

    I had CK done at UCSF in Sep 2010 and, after some uncertainty, am finally confident that the treatment was entirely successful.  No side effects or limitations on physical activities whatsoever following treatment.  So, if you're eligible, I recommend CK over any other treatment option, which all have potential side effects and problems that CK does not.

    I don't know any CK providers in Colorado but according to Accuray's site (the mfg of CK), there are 6, including one located at the Univerity of Colorado Cancer Center in Lone Tree.  Personally, I'd opt for the university over private centers but that's your choice.  You can find the treatment center information here: http://www.accuray.com/treatment-centers

    Best of luck and please keep us informed about your progress!

     

  • CC52
    CC52 Member Posts: 105 Member
    #5
    Dave,
    My situation is

    Dave,

    My situation is similar: GS 3+3=6, with 3/18 cores positive (5%, 30%, 30% w/PNI). 1st of 2 second opinions today at Georgetown with the CK specialist there. While I am just outside the % range for participation in their clinical study, he feels I may be a strong candidate for AS. At 61, he believes I would benefit from AS in allowing me to maintain my current normal, and otherwise healthy, quality of life. Certainly there are risks associated with AS (I have cancer - it's not going away), but I'm willing to set treatment aside for now. Your age will play a major role in how you proceed. For what it's worth, I will likely go the CK route should treatment be required.

    As Builder stated, do your research first...don't feel a need to rush into anything. It can be daunting, as there is no "one size fits all" solution. You will find varied experiences and opinions expressed here, and of course there is a wealth of info on the internet. Talk with friends, and friends of friends. Then, you can make an informed decision that you will not regret.

    Best of luck, and keep us updated

    CC52

  • dksmith6581
    dksmith6581 Member Posts: 4
    #6
    Kongo said:

    Welcome

    Dave,

     

    Welcome to the forum and sorry to read of your diagnosis.  The good news, if there is such a thing, is that from your biopsy it appears that you have been diagnosed with a very low risk form of this cancer.  You have a number of great options available to you and I hope you take the time to research them thoroughly.  You should also consider active surveillance if a doctor advises it.  That would likely be based on the percent involvement in the two positive cores.

     

    I am wondering with your very low PSA score, what prompted the biopsy?  Did you have other symptoms?

    I had CK in Southern California in 2010 and am extremely happy with the results.  No side effects whatsoever.  I'm not familiar with CyberKnife facilities in Colorado but I hope you research them and make a consulting visit.

    Please share with us the rest of your diagnosis when it is available to you and by all means, go book that moose. 

    Best wishes for a successful learning period and a stress free decision.

     

    K

    Thanks for the iput

     Hi Kongo

     

     The reason I had a biopsy is that I had a node discovered a few years back and it was watched for 7 years. My doctor retired and I moved and got lax about follow up exams. I went to my regular doctor and he recommended I get anothe DEA. At this DEA the doctor dicovered the node had gotten larger so we did the biopsy which came back positive.

     My wife an I have discussed treatment options and neither wants to wait. I have a consulation schedule for th 7th of Jan. at Penrose cancer Center in Colorado Springs.

     

     I have not decided on anything for sure I want to get all the test results before doing anything.

     

     There is 2 positive spots both 5%  and one pin.

     

     Once I get the other test results I'll update the string.

     

    Thanks

     

    Dave

  • dksmith6581
    dksmith6581 Member Posts: 4
    #7
    CC52 said:

    Dave,
    My situation is

    Dave,

    My situation is similar: GS 3+3=6, with 3/18 cores positive (5%, 30%, 30% w/PNI). 1st of 2 second opinions today at Georgetown with the CK specialist there. While I am just outside the % range for participation in their clinical study, he feels I may be a strong candidate for AS. At 61, he believes I would benefit from AS in allowing me to maintain my current normal, and otherwise healthy, quality of life. Certainly there are risks associated with AS (I have cancer - it's not going away), but I'm willing to set treatment aside for now. Your age will play a major role in how you proceed. For what it's worth, I will likely go the CK route should treatment be required.

    As Builder stated, do your research first...don't feel a need to rush into anything. It can be daunting, as there is no "one size fits all" solution. You will find varied experiences and opinions expressed here, and of course there is a wealth of info on the internet. Talk with friends, and friends of friends. Then, you can make an informed decision that you will not regret.

    Best of luck, and keep us updated

    CC52

    still in the reseach stage

     Got a appointment schedule for a consulation in Jan. plan on going from there.

     

     Good luck to you.

     

    Dave

  • dksmith6581
    dksmith6581 Member Posts: 4
    #8
    Builder23 said:

    Welcome to the forum

    Dave,

     

    Before you make any decisions on surgery or CK educate your self on all the alternatives.  This is a great site and will help you immensely.  I am in a similar situation with a 3+3 gleason score and 7% involvement in one core.

    Because of my age and other factors we are doing active surveillence.  What is your stage?  What is your age?  What is your health?   A second opinion is always advisable plus 3t-MRI & Pet/ct scan.  I am sure you will receive a lot of input from the many knowledgeable PC survivors.

    Good Luck

    Bldr23

    Planningstage so far

     Hi Builder

     

     Just in the resarch stage so far but I am going to do something, just waiting it get all the tests done before deciding.

     

     My age is 65 and in excellent health. After doing all the reading in here and seeing what could also be a problem, i.e. the spread to bone on lymph nodes I want all the facts I can gather before putting anything in stone.

     

    Thanks for the information

     

    Dave

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #9
    dksmith6581 said:

    Thanks for the iput

     Hi Kongo

     

     The reason I had a biopsy is that I had a node discovered a few years back and it was watched for 7 years. My doctor retired and I moved and got lax about follow up exams. I went to my regular doctor and he recommended I get anothe DEA. At this DEA the doctor dicovered the node had gotten larger so we did the biopsy which came back positive.

     My wife an I have discussed treatment options and neither wants to wait. I have a consulation schedule for th 7th of Jan. at Penrose cancer Center in Colorado Springs.

     

     I have not decided on anything for sure I want to get all the test results before doing anything.

     

     There is 2 positive spots both 5%  and one pin.

     

     Once I get the other test results I'll update the string.

     

    Thanks

     

    Dave

    Great that you are doing

    Great that you are doing research. In addition to this internet forum and information available  to you, there are books, local support group; two international suprt group organizations are USTOO. com and Man to Man. Check these out to see if there is a local support group in your area.

    In March, 09, for my 66 birthday present I was diagnosed with 2 of 12 cores with less than 5 percent involvement in each. I was told that my cancer was most likely indolent, not likely to spread. After I had at that time an MRI with a spectroscopy to see if there was any signs of extracapsular extension, which fortunately was not,( Now a days, a 3.0 Tesla MRI will do the job) I entered an Active Surveilance program. I am still in a program "Active Surveillance with delayed treatment if necessary". You can view all the details of my journey by clicking my name. There is also other information available that will be informative to you about this treatment. 

    Generally about 70 percent of cancers in a low risk diagnoses as I have had and you appear to have are indolent with about 30 percent wolfs in sheeps clothing. In order to avoid the side effect of active treatment which can be considerable, I choose the active surveillande treatment option. Studies have shown that those who are regularly monitored in a program can still seek the same treatment as they would initially have choosen if progression of disease is found.

    For your information and others who read this and are interested in an Active Surveillance program, there is new technology available, that is MRI targeted biopsies; what occurs is a multi parametric MRI using a high power Tesla machine locates suspecious lessions in the prostate and ranks them by the importance....then the MRI results are fused with a biopsy machine that has a three dimensional capability and the most relevant suspecious lessions are targeted, if any. .....Also there is a similar procedure using an MRI machine in real time.

    ......

    Additionally since determining gleason scores are subjective I strongly recommend that you have a second opinion on the pathology of your slides by a world class pathologist that speciallizes in prostate cancer so that you will not be under or over treated............all the discussions by the various docs that it is important for you to see in various specialties are based on this information.

    Also get an 3.0 tesla mri to see if any extracapsular extension shows, if there are signs of cancer in one lobe or two, and how large the lessions are, if any.

    Best wishes

     

     

  • Beau2
    Beau2 Member Posts: 261
    #10
    Colorado Providers

     

    I would recommend you consider AS if you qualify.  Any treatment has a potential for side effects.

    When looking for a doctor, I would recommend you start with the University of Colorado (Anschutz) in Aurora. It is my feeling that they offer the best PCa care in the state. A Dr. Crawford comes to mind as being a world class specialist. I did not go there for my surgery (I was treated by Kaiser) but from what I have learned since then, UC seems to be the best in Colorado.

    My second choice would be TUCC (The Urology Center of Colorado), located near Mile High Stadium ... I have met a couple of guys who received surgery and radiation at TUCC that felt their treatments went very well.  I currently go to TUCC for my follow up PSAs (Dr. Jones).

    I am not very familiar with the CK facility in Denver. I know it is relatively new (1 or 2 years?) and I do not know of anyone treated there. You may want to consider going out of state (California?) if you are considering CK to get doctors with a bit more experience. I am not saying the doctors at the Colorado facility are bad or inexperienced (I really do not know); however, I have heard good reports on CK treatments in California.

    Good luck as you move forward!

  • donsantell
    donsantell Member Posts: 5
    #11
    Have you looked into Proton

    Have you looked into Proton Beam Therapy?  I finished this treatment on 11/1/13 and am very happy with the results.  I have 0 side effects and it is a painless procedure.  There are 11 treatment centers around the country with more due to come on line soon.  I was treated in Jacksonville, FL at the University of Florida Proton Institute and would highly reccoment them.  If you go to their website, www.floridaproton.org, you will find much information about Proton Treatment.  It is the most exacting treatment using radiation you can receive.  If you email them they will send you, by overnight mail, a packet including a book by Bob Markini that you willf find very very informative and will answer many questions you may have.  The cure rate is the same or better than surgery and the rate of side effects, impedence, incontinentce, etc. is much lower. 

    Usually your urologist will not reccomend Proton Beam Therapy as they are surgeons and cannot perform this.  The centers are very expensive to build and usually are done at Universities where they can get the funding to build these massive buildings required for the treatment.

    My guess is you have not heard of this procedure but I would suggest before making up your mind look into it.

    My gleason was a 3-4= 7 and a psa of 4.7  I would guess with a gleason of 6 whatever you choose will give you a cure.  I'm not a Dr. but I did sleep at a Holiday Inn Express recently.

    Don Santella


     
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #12
    donsantell said:

    Have you looked into Proton

    Have you looked into Proton Beam Therapy?  I finished this treatment on 11/1/13 and am very happy with the results.  I have 0 side effects and it is a painless procedure.  There are 11 treatment centers around the country with more due to come on line soon.  I was treated in Jacksonville, FL at the University of Florida Proton Institute and would highly reccoment them.  If you go to their website, www.floridaproton.org, you will find much information about Proton Treatment.  It is the most exacting treatment using radiation you can receive.  If you email them they will send you, by overnight mail, a packet including a book by Bob Markini that you willf find very very informative and will answer many questions you may have.  The cure rate is the same or better than surgery and the rate of side effects, impedence, incontinentce, etc. is much lower. 

    Usually your urologist will not reccomend Proton Beam Therapy as they are surgeons and cannot perform this.  The centers are very expensive to build and usually are done at Universities where they can get the funding to build these massive buildings required for the treatment.

    My guess is you have not heard of this procedure but I would suggest before making up your mind look into it.

    My gleason was a 3-4= 7 and a psa of 4.7  I would guess with a gleason of 6 whatever you choose will give you a cure.  I'm not a Dr. but I did sleep at a Holiday Inn Express recently.

    Don Santella


     
    PBT vs CK

    A lot of success reported w/PBT but it's really"old" technology now. 

    The main difference between PBT and CK in terms of treatment is that you only need 3-5 treatment sessions w/CK but have to have around 35-40 treatments over 7-8 weeks for PBT which, for most people, means that they have to move and live temporarily near a PBT treatment center in order to receive such treatment.

    With PBT, you also have to have a cast made of your body so that you can't move during the treatment AND you have to have a water filled balloon inserted in your anus during each treatment in order to protect your rectum, which is the reason for the name of the PBT support group -- BOB (Brotherhood of the Balloon).

    Not so w/CK.  The computer program adjusts not only for body but also organ movement during treatment.  During one of my treatment sessions, the operator stopped because they "saw" gas passing through my lower intestine which affected the positioning of the prostate.  NO other treament method other than CK can make such adjustments and is one of the reasons why so few CK patients report any negative radiation side effects.  The accuracy of CK radiation delivery (to the sub-mm level) is the other reason why radiation side effects are uncommon for CK patientts.

    Also, I'm not sure if PBT is covered by medical insurance policies yet or not (it wasn'twhen I looked into it), but CK is covered by CA Blue Shield which paid for my treaments back in 2010.

    Doesn't mean that PBT is

    My comments don't mean that PBT isn't a viable alternative but, all things being equal, CK is IMHO the better treatment method for those who are eligible for it. 

     

     

     

     

     

     

Discussion Boards