new member of your group
To add to the DX as of today we have now been transferred to Kaiser Southern Ca so we need to figure out how this HMO works and find a Urologist in the LA area. -any recommendations appreciated
Our Dr recommended using a lab- Aureon to do a second look at the path to check on aggressiveness prior to any treatment decisions. Has anyone used them?
Thanks for listening - Joey and Kathy
Comments
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Kathy
Welcome to the group although I am so sorry you are here. I'm sure you will find much useful advice here from men (and some wives) who have recently traveled along the same journey you two are now embarking. And congratulations for taking an active role in researching potential treatment options. Having a partner to sort through all of the information (much of which you will find to be conflicting) is a big help in helping your husband reach a decision on which course of action is best for him.
I agree with your doctor that getting a second opinion on the biopsy is a savy first step and the Aureon lab has a technique that provides a more insightful look at the potential aggressiveness of the type of cancer your husband has. Your doctor must order the pathology opinion and there is information at the Aureon website that will guide you through the process and how the samples must be shipped.
Other information which can help you and your medical team determine the severity and aggressiveness of your husband's cancer are things such as the size of the prostate (they likely calculated that with the ultrasound probe when the biopsy was done), whether or not the doctor detected any nodules, firmness, or other abnormalties when they did the DRE (since your husband was staged at T1c his prostate was most likely unremarkable to the touch), and a family history of PCa. Another useful tool is the calculation of the PSA density (the ratio of PSA to prostate volume), PSA velocity (the speed at which the PSA is increasing), and the PSA doubling time (the predicted time it will take your husband's PSA to double). There are several nomograms available online (Sloan-Kettering is a good one) that will automatically calculate the PSA velocity and doubling time when you enter your PSA history. Since your husband is so young, he may not have a long history of PSA readings but it's something to look at anyway. Typically, a low PSA density, a slow PSA velocity, and a long PSA doubling time is indicative of an early stage, indolent cancer.
I would also strongly urge you to begin keeping a file that has a complete medical history that shows the biopsy, medications, results of blood work, doctor's notes, and other medical information you will need when you go for consultations and seek second opinions on treatment options. Takng a tape recorder to your consultations is also a good idea.
I am no expert on Kaiser and used another type of insurance for my treatment but several family members have Kaiser. Many HMOs will limit your treatment choices. I believe that Kaiser offers both brachytherapy and surgical options but there are many, many other options that may be suitable for your husband's treatment that are not covered by Kaiser. Although it may be expensive, given the young age of your husband, I would urge you to be open to other treatment options outside the Kaiser menu of choices.
While brachytherapy or surgery are certainly appropriate options, you should also investigate other treatments such as IMRT, IGRT, XBRT, HDR brachytherapy, proton therapy, cyro surgery, CyberKnife, HIFU, and active surveillance, so that you can make a fully informed decison when the time comes.
Whichever course of treatment you eventually pursue, there will be some side effects and some are quite debilitating. Mostly side effects fall into the categories of degree of urinary incontinence, erectile function, sexual desire, penile atrophy, and potency. Make sure you discuss all of these options fully with your doctors so that you understand the potential impact because once you have a treatment performed, you can't go back and do it over again if you're unhappy with the results. Many of the posts on this forum detail many of the potential side effects that some men suffer and how they deal with them.
At the begining it often seems like there is just too much information out there with too many conflicting opinions to be able to make an informed decision but you've come to a good place to start and within a month or so you will have a much, much better appreciation of what lies ahead.
I posted some blog entries on this site (click on my name to navigate there) where I detail my diagnosis, research process, consultations, and how I reached a decision about treatment. You may find it useful as I'm sure you will go through many of the same steps I (and others) have taken.
Good luck and don't hesitate to ask a lot of questions. The posters here will be very helpful to you as you go forward.
--------------
Age: 59. Diagnosed in March 2010. Dx PSA: 4.3 , Gleason 3+3=6, Stage T1c. DRE: Normal No family history or any physical symptoms. Treatment course: Radiation with CyberKnife in June 2010. Side effects: Zero to date.0 -
While you are reseaching,
While you are reseaching, don't neglect to look into proton Therapy. Contack Loma Linda Medical Center in CA and request the free book and DVD to watch. Surgery always sound like a complete cand quick fix- but for a lot of men is certainly isn't complete or quick.
I'm on the mailing list for the Proton newsletter- always some very happy testimonials about choosing proton therapy.0 -
Joey and Kathy,
Another
Joey and Kathy,
Another welcome from another prostate cancer survivor. Kongo has given you many excellent points to consider in your research. This is the one disease that your husband can pick his treatment options. Is one better then the other? That is for you to decide since they all have the same goal of getting your husband cancer free. Unfortunately though they all have side effects but at your husbands age he hopefully will do great on overcoming the side effects.
Personally I researched all the options laid out by Kongo and then chose Davinci Robotic Surgery. That was my decision due to my cancer being called borderline aggressive by two different doctors. Yes I was aware of the side effects and happy to report that at 10 months post surgery all is well on urinary control and on sexual ability. (I'm 55).
I know of a man at church that had the Brachy seed implant and is doing great 20 + years later. My father was treated with the Proton Beam at Loma Linda California back in 1997 and is doing great.
A couple books I would recommend is Dr. Walsh's Guide to Surviving Prostate Cancer and
Saving Your Sex Life: A Guide for Men with Prostate Cancer by Dr. John P Mulhall. These are both excellent books to include in your research.
Keep us posted since we all like to cheer our fellow prostate cancer 'brothers' along their journey.
Larry age 55
Davinci Surgery Aug. 2009
Pre surgery PSA 5.3
Post surgery PSA 0
Pre surgery Gleason 4+3 (7)
Post surgery Gleason 3+4 (7)0 -
Best to you and your husband in this journey….
If you are considering surgery, you will find a wealth of information concerning prostate cancer at Dr. William Catalona's Urological Research Foundation Site.
Dr. Catalona developed the PSA test as a screening test for prostate cancer. His Q & A section on prostate cancer has valuable information for newbies and veterans dealing with this disease.
Dr. Catalona has performed more than 5000 radical prostatectomies and men come to him from around the world . He was my surgeon. If you wish to increase your knowledge concerning this insidious disease, visit.... www.drcatalona.com
Peace0 -
Tests
I strongly recommend that you get a second opinion on the biopsy.......it's very complicated to determine the aggressiveness of the gleason score, so you want to go to an expert in the field.........two are Johns Hopkins, Boswich...simply have the parrifin blocks sent.
Aereon.........I used Aureon...here is some information.
this is a molecular test , where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is that among 100 bad tumors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
-----------------
Another test
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.
My information:
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI(tesla 1.5) with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Entered in a research study for active surveillance at UCLA.
PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
Ira0 -
Thankshopeful and optimistic said:Tests
I strongly recommend that you get a second opinion on the biopsy.......it's very complicated to determine the aggressiveness of the gleason score, so you want to go to an expert in the field.........two are Johns Hopkins, Boswich...simply have the parrifin blocks sent.
Aereon.........I used Aureon...here is some information.
this is a molecular test , where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.
But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is that among 100 bad tumors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.
I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284
-----------------
Another test
MRI
There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.
The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.
The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.
The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.
My information:
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI(tesla 1.5) with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Entered in a research study for active surveillance at UCLA.
PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
Ira
Thanks for all the support - We will make our way through all of your past posts and blogs. We have lots to do and many specialists in their fields to talk to. I am more than willing to break open the retirement fund and outside pay for any treatment if we could just sort through all the stats and find that "perfect" one.
They all seem to have close stats just differences in side effects. It's frustrating to read - Brachy less side effects now more in the future - or Surgery more now and less ED later but of course these are all choices you guys have been through.Quick questions:
Is Brachy out if he has a gleason of 7 - found some sites that said only 6's
If you have cyberknife,brachy or proton what can be done if it comes back?
Our Dr was not much help, he thought every option was perfect and of course he could perform them all with minimum complication (lol) except ultrasound one which he would send us to his Germany pal for. Anyways, again thanks for the support, you are a wealth of info in a very confusing journey.
Kathy0 -
that "perfect" oneawife said:Thanks
Thanks for all the support - We will make our way through all of your past posts and blogs. We have lots to do and many specialists in their fields to talk to. I am more than willing to break open the retirement fund and outside pay for any treatment if we could just sort through all the stats and find that "perfect" one.
They all seem to have close stats just differences in side effects. It's frustrating to read - Brachy less side effects now more in the future - or Surgery more now and less ED later but of course these are all choices you guys have been through.Quick questions:
Is Brachy out if he has a gleason of 7 - found some sites that said only 6's
If you have cyberknife,brachy or proton what can be done if it comes back?
Our Dr was not much help, he thought every option was perfect and of course he could perform them all with minimum complication (lol) except ultrasound one which he would send us to his Germany pal for. Anyways, again thanks for the support, you are a wealth of info in a very confusing journey.
Kathy
I don't think I ever found the "perfect" one but in trying to find it I found it helpful to prioitize what was important to me and then evaluate my treatment choices against those priorities. This could be something that you might want to consider.
Mr priorities were to:
1. get the cancer out (most important)
2. not be incontinent,
3. not have ED (least important).
I'm guessing you might have different prioities, or a few more than I did.
I'd also emphasize that you carefully examine the training of any doc you choose ... no matter what treatment method.
Best wishes.0 -
Your Questionsawife said:Thanks
Thanks for all the support - We will make our way through all of your past posts and blogs. We have lots to do and many specialists in their fields to talk to. I am more than willing to break open the retirement fund and outside pay for any treatment if we could just sort through all the stats and find that "perfect" one.
They all seem to have close stats just differences in side effects. It's frustrating to read - Brachy less side effects now more in the future - or Surgery more now and less ED later but of course these are all choices you guys have been through.Quick questions:
Is Brachy out if he has a gleason of 7 - found some sites that said only 6's
If you have cyberknife,brachy or proton what can be done if it comes back?
Our Dr was not much help, he thought every option was perfect and of course he could perform them all with minimum complication (lol) except ultrasound one which he would send us to his Germany pal for. Anyways, again thanks for the support, you are a wealth of info in a very confusing journey.
Kathy
Kathy,
Whether or not your husband 'qualifies' for brachytherapy as a mono-treatment is a question only your chosen radiologist can answer. As I understand it the ideal brachy patient has a Gleason score of less than 7 and a PSA less than 10. I know that men with a Gleason 7 can be treated with brachytherapy but they may also need to do an extra radiation boost in conjunction with the seeds implant. Additionally, for obese patients, brachytherapy may not be an appropriate treatment option.
Regarding what to do if the first treatment fails: There are always 'salvage' options but the point is to go after the treatment option that has the best chance of killing the cancer on the first go-round. For radiation treatment, the long term success rate is above 95% using the newer techniques. Some types of radiation generally preclude surgery as a follow-on treatment because of scarring and a very high probability of severe incontinence issues afterward. Cyberknife does have surgery as a possible follow-on treatment becasue of the high degree of accuracy this technique delivers radiation to the prostate and minimizes damage to surround tissue and organs but each individual case would need to be carefully evaluated by the surgeon.
Almost 30% of patients who have surgery see a rise in PSA after the prostate has been removed and must undergo follow-on radiation treatment to attack the cancer that is in the prostate bed, nerve bundles, or seminal vesicules. Long term cure rates for surgery alone or surgery that requires follow-on radiation show a slightly higher overall success rate than radiation but any treatment after the failure of the initial course carries a much higher risk of increased severity of the side effects.
Many fans of surgery will tell you that one of the advantages of the knife is that you have a fall back plan if it doesn't work. In my own personal opinion, I would not be worrying about Plan B. Instead, I would suggest that you focus on Plan A and get it the first time by making the best choice for your individual cancer.
Regarding the ultra-sound, you don't have to go all the way to Germany. It is available in Canada and Mexico although it is not yet approved as a treatment in the US. Studies are underway to gauge its efficacy and I presume that it will eventually be approved for use in the states but it will probably take insurance companies a while to approve the procedure.
If all else fails follow on treatments might include localized cryo therapy where they freeze the area of the prostate that has cancer and try to spare the nerves and uretha anatomy, hormone treatment, chemo-therapy, chemical or physical castration, and so on. In any event, I think the choice you have to make as you gather information is what is the single best FIRST choice for your situation.
The results from the second biopsy opinion should be a help in evaluating your choices.
In the LA area, as others have mentioned, Loma Linda Medical Center is the pioneer in proton therapy and have been doing the procedure for more than 20 years. I consulted with them and was very impressed and it ended up being my Number 2 choice but I would have been confident had I gone there. The CyberKnife center I chose is in Vista, CA (about halfway between SD and Corona) but I am sure there are others closer to the LA area. CyberKnife also hosts a physican moderated patient forum that I found quite useful in asking questions about the procedure and always received a prompt response.
If your doctor isn't being much help, get another doctor! The physician works for you in these situations and you need to be absolutely confident that they're giving you all the information you need in a format that helps you make an informed decision.
Good luck and try to get some sleep...I notice that your first post was done at 2:30 in the morning!0 -
Support groups are a great source of information. You mentioned that you are going to a Kaiser in Southern California. Where do you live? I am in Los Alamitos, just south of Long Beach, and there are some very excellent support groups in the area. .......Ira0
-
Kathy,I mightawife said:Thanks
Thanks for all the support - We will make our way through all of your past posts and blogs. We have lots to do and many specialists in their fields to talk to. I am more than willing to break open the retirement fund and outside pay for any treatment if we could just sort through all the stats and find that "perfect" one.
They all seem to have close stats just differences in side effects. It's frustrating to read - Brachy less side effects now more in the future - or Surgery more now and less ED later but of course these are all choices you guys have been through.Quick questions:
Is Brachy out if he has a gleason of 7 - found some sites that said only 6's
If you have cyberknife,brachy or proton what can be done if it comes back?
Our Dr was not much help, he thought every option was perfect and of course he could perform them all with minimum complication (lol) except ultrasound one which he would send us to his Germany pal for. Anyways, again thanks for the support, you are a wealth of info in a very confusing journey.
Kathy
Kathy,
I might missunderstand what you meant but said "our dr...., he thought every option as perfect and of course he could perform them all..." I'm not aware of Doctors that do all the options. Usually a Dr will specilize in surgery or radiation or cyberknife or proton.
The point being is again they all have the same goal to get your husband cancer free! A proton doctor will push proton, a surgeon tends to push surgery, etc. I would search for a specialist in which ever treatment mode that your husband eventually picks. His Urologist can provide his followup PSA testing.
Yes the research can be frustrating but hang in there. The more you learn the clearer the path will become as you start setting your goals and priorities. As others stated my main goals were 1. Get cancer free 2. Urinary Control 3. Sexual ability 4. Back up option if the cancer comes back.
If you or your husband want to chat or converse offline just let anyone know. There are several woman on the forum that I'm sure would talk to you woman to woman and many of us guys have talked to other men via phone or private email. For me it was a tremendous help to talk man to man with some guys privately about all those questions.
Take care and we are all still cheering you two on!
Larry0 -
from one PCa wife in So Cal to another
Kathy,
Always sorry to hear of another PCa dx, but glad you found this site. There is some good info on this discussion board, but with few exceptions, most of the info is very subjective based on individual experiences, so in addition to reading several pages of posts, you MUST do your own critical and objective research as there is sooo much to learn. There are many good posts with recommendations for PCa books, websites, medical/scientific articles/studies/literature, etc, so this might be a good place to start. We have found that while there are no easy answers for PCa tx choices, there is no substitute for reading as much as possible and educating yourself on this subject.
I've previously written about our So Cal Kaiser experiences with PCa on this discussion board. There are 4 main Kaiser "hubs" in and around the Los Angeles area and we are very familiar with two of them, as we live just a bit north of L.A. A search on the PCa discussion board using the key word "Kaiser" will give you add'l info, but if you'd like to read my general posts specifically related to our Kaiser So Cal experiences, I've posted the links for you below:
post dated 4/26/10 http://csn.cancer.org/node/190991
post dated 5/28/10 http://csn.cancer.org/node/193113
Please feel free to ask/post any specific questions. I don't believe in publicly posting the names of the doctors we personally spoke with, however, I would be happy to discuss the subject with you via the CSN email network, should you need more info.
I wanted to clarify one poster's comment about obtaining a second opinion on the initial biopsy, which I strongly recommend. I am not referring to Aureon, but to nationally known and respected PCa pathology labs. You do not need your doctor to "order" the 2nd opinion biopsy report (exception: there is one well-known 2nd opinion biopsy pathology lab that does require the order to come from the doctor and the report will be sent to the doctor, not to you). While at Kaiser, PJD personally made arrangements with his doctor and the lab to release and pick up his own biopsy slides (they are actually yours, not the labs). He had determined that he wanted to obtain a second opinion on his biopsy slides by a well known PCa pathologist at Johns Hopkins. After researching the info, he packaged the slides, and sent them out to JH along with the appropriate forms, etc. He personally received the slides back from JH, along with the 2nd opinion report, which we shared with his (then) Kaiser urologist for additional PCa staging.
Depending on where you live, there are several face to face PCa support groups in and around the L.A. area as well as some excellent free cancer resource centers such as "The Wellness Community." These support groups welcome wives (and other family members) and are not just for "emotional" support, but also offer educational info, and especially "local" resources. Your husband is lucky to have your support as both a partner and "researcher" during this very challenging journey.
Best,
mrs pjd0
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