Advice for newly diagnosed
Scout
Comments
-
More information please
Sorry that your husband has been diagnosed with this disease, however there appears to be early detection, so there are choices.
Before commenting , please provide more detailed information.
Is the gleason 3+3=6 in each positive core?
What is the involvement of each, that is what is the percent positive in each core?
How has his PSA's been running during the last few years?
Has he had any other tests?
How is his general health?
Did you get a second opinion of the pathology from a different institution where they are expert, if not you need to?
Ira
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.
Johns Hopkins.......second opinion confirm no cancer0 -
Treatment decisions
One factor that influenced my decision (I had open surgery) was when my surgeon said I could have surgery and if necessary, follow up with radiation (it wasn't necessary). However, if I had radiation first followed by surgery, the radiation could turn the tissues into "mush" and it's like operating on jello. In other words, radiation makes follow-up surgery problematic. I chose the surgery as my primary weapon and held radiation in reserve. So far, four years of undetectable PSA's.0 -
infohopeful and optimistic said:More information please
Sorry that your husband has been diagnosed with this disease, however there appears to be early detection, so there are choices.
Before commenting , please provide more detailed information.
Is the gleason 3+3=6 in each positive core?
What is the involvement of each, that is what is the percent positive in each core?
How has his PSA's been running during the last few years?
Has he had any other tests?
How is his general health?
Did you get a second opinion of the pathology from a different institution where they are expert, if not you need to?
Ira
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.
Johns Hopkins.......second opinion confirm no cancer
Gleason 3+3=6, 3 of 12 cores positive- 5% involvement in two and 7% involvement in one.
PSA- I think it was .4 four years ago, .8 two years ago, 1.6 a few weeks ago.
No other tests performed, just got biopsy results a couple of days ago.
General health is excellent, mountain bikes every other day. Urologist said he seems 10 years younger than age due to fitness level.
Will seek second opinion.
Thanks0 -
interestingSkid Row Tom said:Treatment decisions
One factor that influenced my decision (I had open surgery) was when my surgeon said I could have surgery and if necessary, follow up with radiation (it wasn't necessary). However, if I had radiation first followed by surgery, the radiation could turn the tissues into "mush" and it's like operating on jello. In other words, radiation makes follow-up surgery problematic. I chose the surgery as my primary weapon and held radiation in reserve. So far, four years of undetectable PSA's.
I had read a little about the mush factor but it wasn't mentioned much in the literature we've read. It seems like an important part to consider when deciding on which route to go. Thank you.0 -
Advice
Scout,
My numbers were similar to those of your husbands, and I chose DaVinci surgery.
Because of your husbands numbers he may be a good candidate for several ptions. I recommend you study one or more of the many excellent books covering PCa; one is Dr. Patrick Walsh's, "Guide to Surviving Prostate Cancer" before you make a decision. Dr. Walsh does seem to prefer open surgery; howver, also discusses other options.
Some guys are very concerned about quality of life issues (i.e. Erectile Dysfunction). You may want to watch Dr. Mulhall's lectures (I believe there are three at about 1.5 hours), especially if your husband is considering surgery. The lectures are at:
www.mskcc.org/mskcc/html/94910.cfm
Good luck on what ever course you choose.0 -
Scoutsteckley said:Advice
Scout,
My numbers were similar to those of your husbands, and I chose DaVinci surgery.
Because of your husbands numbers he may be a good candidate for several ptions. I recommend you study one or more of the many excellent books covering PCa; one is Dr. Patrick Walsh's, "Guide to Surviving Prostate Cancer" before you make a decision. Dr. Walsh does seem to prefer open surgery; howver, also discusses other options.
Some guys are very concerned about quality of life issues (i.e. Erectile Dysfunction). You may want to watch Dr. Mulhall's lectures (I believe there are three at about 1.5 hours), especially if your husband is considering surgery. The lectures are at:
www.mskcc.org/mskcc/html/94910.cfm
Good luck on what ever course you choose.
Sorry to hear that your husband has this disease but you are both fortunate that this was discovered early and that your numbers (at least what you have provided) seem to indicate that you have several potential options for treating the disease.
I would be wary of comments from others about characteristics of some of the various types of treatment or those who strongly favor their method of combating the cancer over any others. For example, radiation does NOT turn your organs or surrounding tissue to "mush." Certain types of radiation may cause scarring in some areas that makes follow-on surgery more difficult but the overall success rates of modern radiation treatments means that very few men need any sort of follow on surgery anyway, so the whole issue is really moot. If the cancer spreads beyond the prostate after radiation then the removal of the prostate will not cure the disease and other courses of action are more appropriate.
About 70% of men in the United States choose surgical removal of the prostate as their main treatment course. Of these, about 30% will see a rise in PSA following their surgery and will require follow-up radiation often with a combination of hormone therapy. While most men who have surgery regain full urinary continence and a varying ability to achieve erections, returning to a "normal" quality of life may be problematical. This forum is filled with threads by men who suffer debilitating quality of life issues following surgery that includes incontinence, erectile dysfunction, penile shrinkage, and other side effects. Make sure the doctors explain in great detail what the potential side effects of their treatment specialty.
There are several types of radiation that successfully treat early stage prostate cancer with extremely high efficacy and much fewer side effects than surgery. Some of these include proton therapy, brachytherapy, HDR brachytherapy, IGRT, XBRT, CyberKnife, IMRT. All have advantages and disadvantages which must be carefully weighed against the specific pathology of your husband's cancer.
There are other treatments as well that include localized cyrosurgery, HIFU, and Active Surveillance. AS, as Ira mentioned in his blog is a very viable option for men with early stage prostate cancer because there is a good probabililty that your husband's disease will never progress beyond the slow-growing indolent stage that was described in your postings.
You have really do your homework on this disease and trust nobody to make these important decisions for you. Urologists are mostly surgeons and over 90% of them will recommend surgery. Radiologists overwhelmingly recommend radiation treatment. In my own case, I read ten books, dozens of medical studies, perused hundreds of blog postings, and consulted with six specialists before making my decision. When I finally made my choices, I was confident I knew what I was getting in to, but even then I kept having second thoughts.
I would urge you to get a complete copy of all of your medical records, calculate your PSA velocity, PSA doubling time, PSA density, and so forth so that you have these statistics readily available when you begin learning about the choices you have to treat PCa.
After you have done your studies, I suggest you make a choice that has the best option of curing your husband's disease the first time, and not worry about whatever fall back plans might be out there. This is a very treatable disease.
The other thing to keep in mind, and I am sure the supecialists you consult with will confirm this, is that in your husband's case this is a very treatable disease and most any option you choose will likely be successful and this is a disease you will die with, not from. Your decision then is to choose a treatment option that promises the least side effects and impact on your quality of life.
Best of luck to you as you start this journey.
===========================================
Age at Dx: 59. DX PSA 4.3, Tx PSA 2.8 (after elimination of dairy)
DRE normal. No history of PCa in the family.
Biopsy: 1 of 12 cores positive with ardenocarcinoma, 15% involvement.
Gleason: 3+3=6, Stage T1c
PCa diagnosed in March 2010. Treatment with Cyberknife radiation in June 2010.
Side effects: None0 -
Steckley thankssteckley said:Advice
Scout,
My numbers were similar to those of your husbands, and I chose DaVinci surgery.
Because of your husbands numbers he may be a good candidate for several ptions. I recommend you study one or more of the many excellent books covering PCa; one is Dr. Patrick Walsh's, "Guide to Surviving Prostate Cancer" before you make a decision. Dr. Walsh does seem to prefer open surgery; howver, also discusses other options.
Some guys are very concerned about quality of life issues (i.e. Erectile Dysfunction). You may want to watch Dr. Mulhall's lectures (I believe there are three at about 1.5 hours), especially if your husband is considering surgery. The lectures are at:
www.mskcc.org/mskcc/html/94910.cfm
Good luck on what ever course you choose.
Thanks for the recommendations for books and lectures. We will read and watch them. With the DaVinci surgery, how long were you in the hospital and how long did it take for you to feel strong and well?0 -
thanks KongoKongo said:Scout
Sorry to hear that your husband has this disease but you are both fortunate that this was discovered early and that your numbers (at least what you have provided) seem to indicate that you have several potential options for treating the disease.
I would be wary of comments from others about characteristics of some of the various types of treatment or those who strongly favor their method of combating the cancer over any others. For example, radiation does NOT turn your organs or surrounding tissue to "mush." Certain types of radiation may cause scarring in some areas that makes follow-on surgery more difficult but the overall success rates of modern radiation treatments means that very few men need any sort of follow on surgery anyway, so the whole issue is really moot. If the cancer spreads beyond the prostate after radiation then the removal of the prostate will not cure the disease and other courses of action are more appropriate.
About 70% of men in the United States choose surgical removal of the prostate as their main treatment course. Of these, about 30% will see a rise in PSA following their surgery and will require follow-up radiation often with a combination of hormone therapy. While most men who have surgery regain full urinary continence and a varying ability to achieve erections, returning to a "normal" quality of life may be problematical. This forum is filled with threads by men who suffer debilitating quality of life issues following surgery that includes incontinence, erectile dysfunction, penile shrinkage, and other side effects. Make sure the doctors explain in great detail what the potential side effects of their treatment specialty.
There are several types of radiation that successfully treat early stage prostate cancer with extremely high efficacy and much fewer side effects than surgery. Some of these include proton therapy, brachytherapy, HDR brachytherapy, IGRT, XBRT, CyberKnife, IMRT. All have advantages and disadvantages which must be carefully weighed against the specific pathology of your husband's cancer.
There are other treatments as well that include localized cyrosurgery, HIFU, and Active Surveillance. AS, as Ira mentioned in his blog is a very viable option for men with early stage prostate cancer because there is a good probabililty that your husband's disease will never progress beyond the slow-growing indolent stage that was described in your postings.
You have really do your homework on this disease and trust nobody to make these important decisions for you. Urologists are mostly surgeons and over 90% of them will recommend surgery. Radiologists overwhelmingly recommend radiation treatment. In my own case, I read ten books, dozens of medical studies, perused hundreds of blog postings, and consulted with six specialists before making my decision. When I finally made my choices, I was confident I knew what I was getting in to, but even then I kept having second thoughts.
I would urge you to get a complete copy of all of your medical records, calculate your PSA velocity, PSA doubling time, PSA density, and so forth so that you have these statistics readily available when you begin learning about the choices you have to treat PCa.
After you have done your studies, I suggest you make a choice that has the best option of curing your husband's disease the first time, and not worry about whatever fall back plans might be out there. This is a very treatable disease.
The other thing to keep in mind, and I am sure the supecialists you consult with will confirm this, is that in your husband's case this is a very treatable disease and most any option you choose will likely be successful and this is a disease you will die with, not from. Your decision then is to choose a treatment option that promises the least side effects and impact on your quality of life.
Best of luck to you as you start this journey.
===========================================
Age at Dx: 59. DX PSA 4.3, Tx PSA 2.8 (after elimination of dairy)
DRE normal. No history of PCa in the family.
Biopsy: 1 of 12 cores positive with ardenocarcinoma, 15% involvement.
Gleason: 3+3=6, Stage T1c
PCa diagnosed in March 2010. Treatment with Cyberknife radiation in June 2010.
Side effects: None
Thanks for your thorough answer. We will begin our search for his best option in treatment.0 -
scout
Kongo gave you very good advice........there are many options available....they all want you because of your low numbers..be cautioned that there are docs that are finacially motivated, and will try to direct you toward their treatment specialty , so they can make money on you, or there are docs that are not very competent....by the way where do you live, and what medical care is available in your area.... if you choose an active treatment option you may have to travel for medical care.
Also remember that you have no rush at all, but continually do your research...your number are very low.
I was diagnosed at my 66 birthday(what a present), with numbers similiar to you.........I did a lot of research....and initially I decided to speak to doctors with various specialties.....first I saw a radiation oncologist who wanted to give me a bone scan, MRI,,,,told me that I had a 50 percent chance that the cancer has spread outside the prostate , also told me that I had 8 weeks to take action and wanted to do braky and external radiation on me....well, the urologist that I initially saw told me that there is a 1 percent chance that it was outside the capsule.........so, one of these docs was full of it.
At this point I went to ucla to see a expert, saw a "world class" surgeon who told me thzt I was a perfect candidate for active surveillance..he didn't want to discuss any surgery with me, and frankly dismissed me after a few minutes....it was the best time I spent with any doctor .....this was a year and a half ago...he was an honest man, he did not try to sell me his service. check my numbers in the above post........
I am happily doing the active surveillance , hopefully for life.....I am being closely monitored, and can and will do a different treatment option if my number change........I have no physical side effects at all.....so for the last year and half things have been good for me.
Also if you click my name you will see the results of an active surveillance study that was done, and other pertinent information.
good luck
Ira0 -
You should read Ralphie62's
You should read Ralphie62's comments in the thread about the Latest Newsletter from LLU on Proton threapy. You can find it by scrolling down a bit. and then contack Ralphie62 about their experience with proton therapy at the UFL proton facility. It would be worth your time.0 -
We live in Santa Cruz, CA.hopeful and optimistic said:scout
Kongo gave you very good advice........there are many options available....they all want you because of your low numbers..be cautioned that there are docs that are finacially motivated, and will try to direct you toward their treatment specialty , so they can make money on you, or there are docs that are not very competent....by the way where do you live, and what medical care is available in your area.... if you choose an active treatment option you may have to travel for medical care.
Also remember that you have no rush at all, but continually do your research...your number are very low.
I was diagnosed at my 66 birthday(what a present), with numbers similiar to you.........I did a lot of research....and initially I decided to speak to doctors with various specialties.....first I saw a radiation oncologist who wanted to give me a bone scan, MRI,,,,told me that I had a 50 percent chance that the cancer has spread outside the prostate , also told me that I had 8 weeks to take action and wanted to do braky and external radiation on me....well, the urologist that I initially saw told me that there is a 1 percent chance that it was outside the capsule.........so, one of these docs was full of it.
At this point I went to ucla to see a expert, saw a "world class" surgeon who told me thzt I was a perfect candidate for active surveillance..he didn't want to discuss any surgery with me, and frankly dismissed me after a few minutes....it was the best time I spent with any doctor .....this was a year and a half ago...he was an honest man, he did not try to sell me his service. check my numbers in the above post........
I am happily doing the active surveillance , hopefully for life.....I am being closely monitored, and can and will do a different treatment option if my number change........I have no physical side effects at all.....so for the last year and half things have been good for me.
Also if you click my name you will see the results of an active surveillance study that was done, and other pertinent information.
good luck
Ira
We live in Santa Cruz, CA. Hope to have second opinion at UCSF. Thanks for your input.0 -
UCSF is an excellent institutionscout5000 said:We live in Santa Cruz, CA.
We live in Santa Cruz, CA. Hope to have second opinion at UCSF. Thanks for your input.
and I've heard a lot of good things about them.....at least one of the posters here is using them.....if I lived in the San Francisco area I would probably use them....I know some here in southern ca who travel to use them.
I don't know if they are or are not recognized as experts in pathology. Two that come to mind are Boswick and Johns Hopkins.
Ira0 -
Many choices
The surgery(davinci) was actually easier on me than the biopsy as my biopsy got infected. I was in the hospital overnight. Had a cath in for 6 days, then when removed absolutely no incontinence and I havent watched what I eat or drink and I do heavy lifting. Also so far no return of my cancer next test next week. 1 year anniversary too. Now for the bad part. No return of sexual function and I still take the pills and hope maybe someday.
Not much information about numbers and such as I expect you researched them. Just a more personal view. I am not sure if sex matters as to some it doesnt but both must be prepared as to what might happen.
Would I do it again meaning surgery, I have mulled this over and still I cant give you an answer. Cancer killed my dad in a slow painful way. so i believe i would go the same route. I guess life was more important than sexual activity and still I am alive to hope that might return.
Sorry about the length of post and I wanted to add more but a long post wasnt my intention just a more person view.
Good luck on the decision you have to make and prayers with you both.
Nick age 53.0 -
Advicescout5000 said:Steckley thanks
Thanks for the recommendations for books and lectures. We will read and watch them. With the DaVinci surgery, how long were you in the hospital and how long did it take for you to feel strong and well?
Scout,
Sorry for delay in getting back to you.
I was in the hospital one day. I had surgery in the morning; up and walking in the afternoon; and reurned home the next day. It was only a 15 mile ride home ... don't think I would have wanted to go further.
I needed a lot of help the first week (thank God for my wife's help); slept in the recliner.
The cath came out after a week and the amount of help I needed after that went to zero. But I was moving slow and carefully. I was lucky and had no leakage problems after the cath was removed. By the third week my walks had increased to over a mile and I was feeling pretty good. I think around week six I felt normal, but had the occasional pain.
I work part time (consult) so I did not have to go to work each day ... if I did I don't think I could have done it on a daily basis untill after week 4.
Hope this helps ... if you have any questions, please feel free to ask.
Good luck with your research and best wishes to you and your husband.0 -
Steckley- Thanks for thesteckley said:Advice
Scout,
Sorry for delay in getting back to you.
I was in the hospital one day. I had surgery in the morning; up and walking in the afternoon; and reurned home the next day. It was only a 15 mile ride home ... don't think I would have wanted to go further.
I needed a lot of help the first week (thank God for my wife's help); slept in the recliner.
The cath came out after a week and the amount of help I needed after that went to zero. But I was moving slow and carefully. I was lucky and had no leakage problems after the cath was removed. By the third week my walks had increased to over a mile and I was feeling pretty good. I think around week six I felt normal, but had the occasional pain.
I work part time (consult) so I did not have to go to work each day ... if I did I don't think I could have done it on a daily basis untill after week 4.
Hope this helps ... if you have any questions, please feel free to ask.
Good luck with your research and best wishes to you and your husband.
Steckley- Thanks for the detailed information about your post-op experience. This helps tremendously.0 -
Steckley- Thanks for thesteckley said:Advice
Scout,
Sorry for delay in getting back to you.
I was in the hospital one day. I had surgery in the morning; up and walking in the afternoon; and reurned home the next day. It was only a 15 mile ride home ... don't think I would have wanted to go further.
I needed a lot of help the first week (thank God for my wife's help); slept in the recliner.
The cath came out after a week and the amount of help I needed after that went to zero. But I was moving slow and carefully. I was lucky and had no leakage problems after the cath was removed. By the third week my walks had increased to over a mile and I was feeling pretty good. I think around week six I felt normal, but had the occasional pain.
I work part time (consult) so I did not have to go to work each day ... if I did I don't think I could have done it on a daily basis untill after week 4.
Hope this helps ... if you have any questions, please feel free to ask.
Good luck with your research and best wishes to you and your husband.
Steckley- Thanks for the detailed information about your post-op experience. This helps tremendously.0 -
Thanks Everybody
Thanks for all of your thoughts and recommendations. I am going to have my husband read all of your comments tonight. I have been filling him in on some of the comments as they have popped up and what he said is that it's great to have so many different opinions. It has convinced us to follow through on at least a second opinion, possibly more. His doc's office told us today that we could get into UC San Francisco for sure for another opinion. Thanks and we wish all of you health and happiness.
Scout & Doug0 -
PSA elevationscout5000 said:info
Gleason 3+3=6, 3 of 12 cores positive- 5% involvement in two and 7% involvement in one.
PSA- I think it was .4 four years ago, .8 two years ago, 1.6 a few weeks ago.
No other tests performed, just got biopsy results a couple of days ago.
General health is excellent, mountain bikes every other day. Urologist said he seems 10 years younger than age due to fitness level.
Will seek second opinion.
Thanks
Dd your husband ride his bike before the PSA....bike riding, sex , digital rectal exam before a PSA elevates the PSA.0 -
Good Advicescout5000 said:Thanks Everybody
Thanks for all of your thoughts and recommendations. I am going to have my husband read all of your comments tonight. I have been filling him in on some of the comments as they have popped up and what he said is that it's great to have so many different opinions. It has convinced us to follow through on at least a second opinion, possibly more. His doc's office told us today that we could get into UC San Francisco for sure for another opinion. Thanks and we wish all of you health and happiness.
Scout & Doug
Scout and Doug,
You have some good advice and as everybody says, you don't have to rush into this. Your numbers are low and you have fortunately caught this early. I was 60 when I was diagnosed with prostate cancer, PSA 22, Gleason 7 all 12 February 2009, radical prostatectomy March 2009. My options were more limited due to high PSA and my my decision became quantity of life instead of quality of life. My urologist discussed all of the options and told me that you need to consider that if you have radiation your options are limited if the cancer should return because of the scar tissue resulting from radiation.
I am now five months postop and my PSA is still 0.008, incontinence is getting better now, sexual function not there yet but my wife of 36 years still loves me. So it is an individual decision you have to make after considering all options and the side effects. I suggest that you and your wife go together on your urologist office visits. Your physical condition is good and that is a plus for you. My advice is keep a positive attitude as you start on your journey with prostate cancer. Feel free to ask any questions you have and someone on this network will be glad to give you advice and answer your questions.
I wish you the best of health and happiness.
JR0 -
having a biopsy tommorrowhopeful and optimistic said:scout
Kongo gave you very good advice........there are many options available....they all want you because of your low numbers..be cautioned that there are docs that are finacially motivated, and will try to direct you toward their treatment specialty , so they can make money on you, or there are docs that are not very competent....by the way where do you live, and what medical care is available in your area.... if you choose an active treatment option you may have to travel for medical care.
Also remember that you have no rush at all, but continually do your research...your number are very low.
I was diagnosed at my 66 birthday(what a present), with numbers similiar to you.........I did a lot of research....and initially I decided to speak to doctors with various specialties.....first I saw a radiation oncologist who wanted to give me a bone scan, MRI,,,,told me that I had a 50 percent chance that the cancer has spread outside the prostate , also told me that I had 8 weeks to take action and wanted to do braky and external radiation on me....well, the urologist that I initially saw told me that there is a 1 percent chance that it was outside the capsule.........so, one of these docs was full of it.
At this point I went to ucla to see a expert, saw a "world class" surgeon who told me thzt I was a perfect candidate for active surveillance..he didn't want to discuss any surgery with me, and frankly dismissed me after a few minutes....it was the best time I spent with any doctor .....this was a year and a half ago...he was an honest man, he did not try to sell me his service. check my numbers in the above post........
I am happily doing the active surveillance , hopefully for life.....I am being closely monitored, and can and will do a different treatment option if my number change........I have no physical side effects at all.....so for the last year and half things have been good for me.
Also if you click my name you will see the results of an active surveillance study that was done, and other pertinent information.
good luck
Ira
will take valium and cipro in morning!!! Do you lay on table when they do this? The dr just had me bend over one for the initial exam!!!! How did you feel immediately afterward? were you able to sit comfortably? did you have to be catheterized? Were you able to eat normally that day? dr said results in two days, also doing bone scan!! any info will be helpful!!! Thanks John0
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