New here
Surgery would be nerve sparing laproscopic..
I'm not new to cancer completely as I am kidney cancer survivor already. I have found much info over on the kidney discussion board and am looking now here for any suggestions on dealing with prostate cancer..
Thanks for your input.
Mike
Comments
-
Educate yourself on all the
Educate yourself on all the possible treatment options and their side effects. Decide which you can live with and which you cannot. Read about experiences others have had with their choices. There is no best treatment, only what is best for you. Of course after second opinions and possible further testing, the possible options will re-order themselves.
I would think that your manner of treatment for kidney cancer will be a deciding factor on how you proceed. Maybe another surgery is not advisable. Maybe another round of radiation or chemo is not wise. Your doctors can advise about that.
Your age and numbers are very similar to mine. I was only concerned with my quality of life. I chose external IMRT and then BRT. I am completely satisfied with my choice 1 year later. I am confident that this will continue but if not, I will still accept whatever happens. It was my choice.
Good luck with your journey. You will get lots of great advice here. It helped me make my decision.0 -
Here are a couple of sitesprezmic said:Educate yourself on all the
Educate yourself on all the possible treatment options and their side effects. Decide which you can live with and which you cannot. Read about experiences others have had with their choices. There is no best treatment, only what is best for you. Of course after second opinions and possible further testing, the possible options will re-order themselves.
I would think that your manner of treatment for kidney cancer will be a deciding factor on how you proceed. Maybe another surgery is not advisable. Maybe another round of radiation or chemo is not wise. Your doctors can advise about that.
Your age and numbers are very similar to mine. I was only concerned with my quality of life. I chose external IMRT and then BRT. I am completely satisfied with my choice 1 year later. I am confident that this will continue but if not, I will still accept whatever happens. It was my choice.
Good luck with your journey. You will get lots of great advice here. It helped me make my decision.
Here are a couple of sites that can get you started.
http://www.prostate-cancer.com/index.html
http://www.prostatecancertreatmentcenter.com/ProstateCancer/ProstateCancerResultsStudyGroup.aspx0 -
Early Stage?
You've got early stage PCa w/a Gleason 6 but your +10 PSA and 7/12 positive samples indicates more than that. So, although you should have time to investigate your options fully, you probably shouldn't take "too" long to take/plan some form of action.
I'm sure someone has already recommended surgery to you, but I'm not a big fan of that and think it should be avoided at all costs because the risks and consequences of surgery are so great and the recovery time so long. The major risks are permanent ED and/or incontinence and, even if successful, temporary ED/incontinence for up to a year.
Take a look at the following article for the straight dope on why surgery may NOT be such a great idea:
http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/
If not surgery, then there are various radiation alternatives:
1) Brachytherapy (BT)-- either low dose rate (LDR) or high dose rate (HDR). LDR is the one most commonly discussed; it uses radioactive seeds that are implanted in your prostate and stay there permanently (except for those few that get passed out). HDR involves the temporary placement of the seeds in the prostate which are then removed. My preference is HDR because the seeds are not left in your prostate and you will not be "radioactive" during the 1/2 life of the seeds (about a year) and you won't have any TSA clearance issues. The problem w/LDR BT arises if the dosage pattern is not designed or placed properly resulting in bladder, rectal and/or urethral damage resulting in incontinence, ED and other issues. The same risk of improper design/placement exists w/HDR BT but, since the radiation is removed w/in a day or 2, the damage/risk tends to be less.
2) IMRT (intensity modulated radiation therapy). This is perhaps the most commonly used version of external beam radiation in use today. It is focused enough to avoid most problems associated w/ancillary tissue damage but not as precise as some other methods also available. The risks of ED/incontinence w/IMRT are less than w/BT. When surgery fails, IMRT is usually recommended for follow-up treatment along w/hormone therapy if necessary.
3) PBT (Proton Beam Therapy): PBT was an improvement over IMRT because it provided a more precise method of radiation delivery than IMRT (and similar methods like IGRT and 3D CRT). However, PBT is only available at a limited # of locations and requires up to 8 weeks of daily treatment and also requires the use of a body cast (to prevent movement) and a water filled balloon placed in the rectum to protect it during treatment. Risks of ED/incontinences are even less than w/IMRT.
4) Lastly, SBRT (steretactic body radiation therapy) is the most recent advancement. I and other men here have received CyberKnife treatment (a form of SBRT) with apparent success. The advantage of CK/SBRT is that it provides the MOST precise delivery of radiation currently available by adjusting for both body AND organ movement during treatment, which minimizes the risk of collateral tissue damages and substantially reduces the risk of ED/incontinence and other problems. Accuracy is to the sub-mm level which far exceeds what can be achieved with other radiation methods, as well as surgery.
Other than Active Surveillance, this pretty much covers all of your options for treatment. You can learn a lot more about each technique by doing simple Google search.
Good luck!
BTW, don't let anyone tell you that if you get radiation, you can't do surgery later. You can but it is problematic and isn't necessary. Like surgery, if the initial treatment fails, you can resort to followup radiation and/or hormone treatment, if required.0 -
Suggestions
Hey Mike,
In addition to the wonderful links given by the previous posters, you may want to consider getting a copy of Dr. Patrick Walsh's book, "A Guide to Surviving Prostate Cancer". I found it very helpful in my attempt to understand my treatment options.
Also, if you are contemplating surgery, you may want to consider getting a copy of Dt. John Mulhall's book, "Saving Your Sex Life, A Guide For Men With Prostate Cancer". You can also google Dr. Mulhall and the subject and get see his online videos covering the subject.
Good luck in your fight against PCa.0 -
Early StageSwingshiftworker said:Early Stage?
You've got early stage PCa w/a Gleason 6 but your +10 PSA and 7/12 positive samples indicates more than that. So, although you should have time to investigate your options fully, you probably shouldn't take "too" long to take/plan some form of action.
I'm sure someone has already recommended surgery to you, but I'm not a big fan of that and think it should be avoided at all costs because the risks and consequences of surgery are so great and the recovery time so long. The major risks are permanent ED and/or incontinence and, even if successful, temporary ED/incontinence for up to a year.
Take a look at the following article for the straight dope on why surgery may NOT be such a great idea:
http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/
If not surgery, then there are various radiation alternatives:
1) Brachytherapy (BT)-- either low dose rate (LDR) or high dose rate (HDR). LDR is the one most commonly discussed; it uses radioactive seeds that are implanted in your prostate and stay there permanently (except for those few that get passed out). HDR involves the temporary placement of the seeds in the prostate which are then removed. My preference is HDR because the seeds are not left in your prostate and you will not be "radioactive" during the 1/2 life of the seeds (about a year) and you won't have any TSA clearance issues. The problem w/LDR BT arises if the dosage pattern is not designed or placed properly resulting in bladder, rectal and/or urethral damage resulting in incontinence, ED and other issues. The same risk of improper design/placement exists w/HDR BT but, since the radiation is removed w/in a day or 2, the damage/risk tends to be less.
2) IMRT (intensity modulated radiation therapy). This is perhaps the most commonly used version of external beam radiation in use today. It is focused enough to avoid most problems associated w/ancillary tissue damage but not as precise as some other methods also available. The risks of ED/incontinence w/IMRT are less than w/BT. When surgery fails, IMRT is usually recommended for follow-up treatment along w/hormone therapy if necessary.
3) PBT (Proton Beam Therapy): PBT was an improvement over IMRT because it provided a more precise method of radiation delivery than IMRT (and similar methods like IGRT and 3D CRT). However, PBT is only available at a limited # of locations and requires up to 8 weeks of daily treatment and also requires the use of a body cast (to prevent movement) and a water filled balloon placed in the rectum to protect it during treatment. Risks of ED/incontinences are even less than w/IMRT.
4) Lastly, SBRT (steretactic body radiation therapy) is the most recent advancement. I and other men here have received CyberKnife treatment (a form of SBRT) with apparent success. The advantage of CK/SBRT is that it provides the MOST precise delivery of radiation currently available by adjusting for both body AND organ movement during treatment, which minimizes the risk of collateral tissue damages and substantially reduces the risk of ED/incontinence and other problems. Accuracy is to the sub-mm level which far exceeds what can be achieved with other radiation methods, as well as surgery.
Other than Active Surveillance, this pretty much covers all of your options for treatment. You can learn a lot more about each technique by doing simple Google search.
Good luck!
BTW, don't let anyone tell you that if you get radiation, you can't do surgery later. You can but it is problematic and isn't necessary. Like surgery, if the initial treatment fails, you can resort to followup radiation and/or hormone treatment, if required.
Welcome to the Brother Hood that no one wants to join.
Take your time and research treatment methods. Above all donot rush into this. Surgery is a one way treatment, when done it cannot be reversed.
The nerve sparring might or might not work.
Spend time looking into the treatments and the side effects. The side effects will vary from person to person.
Above all research0 -
Welcome to the club and wish
Welcome to the club and wish you never received an invitation. First you will find a lot of great and knowledgable people here to help you. You came to a good place. The first thing you need to do is get a second opinion of your biopsy. You can go to Hopkins, Sloan or MD Andersona, all are great. I was 49 when diagnosed last year. Choice was easy I had a 3+4 on 3 of 15 cores all in one spot. I had surgery in Novemebr and was up graded to a 4+3 but all contained. That said I do not know if I had micro metastisis only time will tell. Your PSA is high but could be due to several things including some BPH which is not cnacer. It could also mean you have a more aggressive cancer that was not sampled. They only take a very small portion. At our age the possability of side effects of radiation down the road and re-occurence made surgery my choice. I would know exactly what I had and if it was coming back. Surgery was easy, had nerve sparing and never needed pain meds except night of surgery I took one. Was dry out of the gate exceot for a few drops here and there which stopped in under 2 months. ED is being handled without drugs. Last few weeks things are coming back well I would get the book survivng prostate cancer by Jack Walsh and read it twice. Question, did your biopsy show perinueral invasion? If so you have about a 35% chance of having a higher grade cancer than you saw on your biopsy. Even without it you have over 20% chance you have a higher grade. All my DRE's which I had (7) were normal yet it was on both sides when found. Good luck and keep us posted.0 -
New here.
Hi Mike,
I got diagnosed PC Dec 2009, Gleason 9, PSA 7, and was told I had aggressive cells. Robotic op was booked but abandoned because of a kidney bother I also had. Open op was attempted early April 2010, but not done because PC had just come out of capsule, and docs feared the op would cause "spill", ie, it would spread, so they sewed me up after taking more biopsies which were all negative. Radio docs gave me EBRT in late 2010 and in conjunction with Eligard for 2 years, which I finished last April. So my treatment is done, but now PSA is rising from low of 0.08 last August because testosterone has come back to try to wake up existing cells. PSA just went from 0.08 to 0.5 in 1 month and I see the next PSA after another 1 month next thursday. PSA will be further monitored. Docs said PSA will rise once testo comes back but didn't say how much or over what period of time. But if PSA rise goes huge, it means PC is still in PG and growing again AND / OR the PC is elsewhere in my body. My full details about what my history was is at http://www.turneraudio.com.au/Patrick-other-concerns.html
Right now is a worrying time for me. If EBRT is deemed to have failed to halt PC I will have to begin the real fight so many of us like to think won't happen to us. We like to think we'll get treated, and then we get cured, and everyone can just carry on as usual again. But unfortunately a large number of fellows die from PC. It would just be my luck to have PC that nothing can stop. There was significance in the word "aggressive" used at diagnosis and nothing much was said about what thet really meant, except the docs wanted to do something as soon as waiting lists permitted, ie, within 4 months.
Of those who die from PC, don't assume they didn't put up a fight, or that they got diagnosed too late. One should assume the very worst is very possible, so fight anyway, find the treatment you can afford, and if Unkel Fate smiles because something works enough to give you 25 more years, well, that's the bonus. I had a sister die from ovarian, another sister had a double mastectomy, my dad went from a melanoma he ignored, and countless others have died despite all their hopes and battles. Two clients died while I had contracts going with them, one had an unknown cancer, another from pancreatic C. At least PC gives you time to fight.
I'm trying to figure out if any alternative remedies might help, but so far it seems those who condemn alternatives have many reasons they can tell us, but those who support alternatives can't tell us why they work, and often don't have the cancer we have. Many people will believe in anything, but I like to see real evidence. So far, it seems radio waves using 434MHz probably has zero effect, and then there is the one where baking soda is pumped into an artery ahead of the cancer site to flood PC cells with alkaline blood. Nobody knows if anything works, it like a very expensive lottery ticket with a very low chance of a win. Many desperate ppl with months to live end up at alternative clinics and they die anyway so they can't tell us anything. People don't like to dwell on failures.
Search Dr "Snuffy" Myers, also Chuck Maack, they both have videos on PC treatment. Chuck says he's prolonged life to 20 years after diagnosis. I want to email Chuck but I can't find his email address, he sounds like a real good guy.
I'm no expert on PC, but I may need to become one. Trouble is some of the latest treatments are not here in Australia yet, and I'm not sure I could travel to USA. Over next months I have to discuss options with my oncologist at the local hospital to see what's on offer here. I'd like to know my REAL chances for the next 20 years. My mother is 95 and never had cancer, but I doubt I will ever see 95.
But while all this stuff goes on I still find motivation to ride 200km+ per week on a bicycle. It gives me around 10 hours of work out, I don't go slow. I also swim about 3km a week because weather has warmed up after winter. In 2006 I was 102Kg, but then changed my diet from 75% healthy to 95% healthy and began riding 10,000km a year. I have had a BMI of 25 since early 2007, resting heart rate of 50. I could not live more healthily if I tried, but all the good habits in the world cannot alter your genes, or the luck that Lady Luck hands to us, so If I have to learn how to die without being too upset, so be it.
I wish the best of luck to all, Patrick Turner.0 -
Diagnostic tests, second opinion, active surveillancepatrick_turner said:New here.
Hi Mike,
I got diagnosed PC Dec 2009, Gleason 9, PSA 7, and was told I had aggressive cells. Robotic op was booked but abandoned because of a kidney bother I also had. Open op was attempted early April 2010, but not done because PC had just come out of capsule, and docs feared the op would cause "spill", ie, it would spread, so they sewed me up after taking more biopsies which were all negative. Radio docs gave me EBRT in late 2010 and in conjunction with Eligard for 2 years, which I finished last April. So my treatment is done, but now PSA is rising from low of 0.08 last August because testosterone has come back to try to wake up existing cells. PSA just went from 0.08 to 0.5 in 1 month and I see the next PSA after another 1 month next thursday. PSA will be further monitored. Docs said PSA will rise once testo comes back but didn't say how much or over what period of time. But if PSA rise goes huge, it means PC is still in PG and growing again AND / OR the PC is elsewhere in my body. My full details about what my history was is at http://www.turneraudio.com.au/Patrick-other-concerns.html
Right now is a worrying time for me. If EBRT is deemed to have failed to halt PC I will have to begin the real fight so many of us like to think won't happen to us. We like to think we'll get treated, and then we get cured, and everyone can just carry on as usual again. But unfortunately a large number of fellows die from PC. It would just be my luck to have PC that nothing can stop. There was significance in the word "aggressive" used at diagnosis and nothing much was said about what thet really meant, except the docs wanted to do something as soon as waiting lists permitted, ie, within 4 months.
Of those who die from PC, don't assume they didn't put up a fight, or that they got diagnosed too late. One should assume the very worst is very possible, so fight anyway, find the treatment you can afford, and if Unkel Fate smiles because something works enough to give you 25 more years, well, that's the bonus. I had a sister die from ovarian, another sister had a double mastectomy, my dad went from a melanoma he ignored, and countless others have died despite all their hopes and battles. Two clients died while I had contracts going with them, one had an unknown cancer, another from pancreatic C. At least PC gives you time to fight.
I'm trying to figure out if any alternative remedies might help, but so far it seems those who condemn alternatives have many reasons they can tell us, but those who support alternatives can't tell us why they work, and often don't have the cancer we have. Many people will believe in anything, but I like to see real evidence. So far, it seems radio waves using 434MHz probably has zero effect, and then there is the one where baking soda is pumped into an artery ahead of the cancer site to flood PC cells with alkaline blood. Nobody knows if anything works, it like a very expensive lottery ticket with a very low chance of a win. Many desperate ppl with months to live end up at alternative clinics and they die anyway so they can't tell us anything. People don't like to dwell on failures.
Search Dr "Snuffy" Myers, also Chuck Maack, they both have videos on PC treatment. Chuck says he's prolonged life to 20 years after diagnosis. I want to email Chuck but I can't find his email address, he sounds like a real good guy.
I'm no expert on PC, but I may need to become one. Trouble is some of the latest treatments are not here in Australia yet, and I'm not sure I could travel to USA. Over next months I have to discuss options with my oncologist at the local hospital to see what's on offer here. I'd like to know my REAL chances for the next 20 years. My mother is 95 and never had cancer, but I doubt I will ever see 95.
But while all this stuff goes on I still find motivation to ride 200km+ per week on a bicycle. It gives me around 10 hours of work out, I don't go slow. I also swim about 3km a week because weather has warmed up after winter. In 2006 I was 102Kg, but then changed my diet from 75% healthy to 95% healthy and began riding 10,000km a year. I have had a BMI of 25 since early 2007, resting heart rate of 50. I could not live more healthily if I tried, but all the good habits in the world cannot alter your genes, or the luck that Lady Luck hands to us, so If I have to learn how to die without being too upset, so be it.
I wish the best of luck to all, Patrick Turner.
As Hunter mentioned, it is very important to have a second opinion by a world class pathologist on your biopsy slides so that you are not under or over treated. Doing the pathology on these slides are subjective, so there is a need for an expert's expert.
Knowing about the extent of your prostate cancer affects your treatment decision, i.e. if there is extracapsular extension, that if the cancer has escaped the capsul,e will affect your treatment decision, so that you would in my laymans opinion, not want to not have various basic treatments such as surgery, but have hormone treatment only. ( you would not suffer the side effects of these other treatments since you will have to have hormome treatment).
-----------------
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.
................................
At this point your cancer does not appear to be low low risk since it has been found in several cores..................Johns Hopkins for example recommends AS for those with less that two cores positive with less than 50 percent involvement in each with a gleason 3+3=6 with a psa under 100 -
To every one, Thanks for all the postsBeau2 said:Suggestions
Hey Mike,
In addition to the wonderful links given by the previous posters, you may want to consider getting a copy of Dr. Patrick Walsh's book, "A Guide to Surviving Prostate Cancer". I found it very helpful in my attempt to understand my treatment options.
Also, if you are contemplating surgery, you may want to consider getting a copy of Dt. John Mulhall's book, "Saving Your Sex Life, A Guide For Men With Prostate Cancer". You can also google Dr. Mulhall and the subject and get see his online videos covering the subject.
Good luck in your fight against PCa.
I did go out and purchase the book by Dr. Patrick Walsh. Man is there a ton of good info in there. Spoke to the Oncologist last week and learned alot about IMRT. I will be speaking to the surgeon this week to learn more what he has to say and to offer.0 -
Sounds like you are doing aAMichael50 said:To every one, Thanks for all the posts
I did go out and purchase the book by Dr. Patrick Walsh. Man is there a ton of good info in there. Spoke to the Oncologist last week and learned alot about IMRT. I will be speaking to the surgeon this week to learn more what he has to say and to offer.
Sounds like you are doing a lot of research and covering all the bases. Good luck.0 -
Thanks hunter49hunter49 said:Welcome to the club and wish
Welcome to the club and wish you never received an invitation. First you will find a lot of great and knowledgable people here to help you. You came to a good place. The first thing you need to do is get a second opinion of your biopsy. You can go to Hopkins, Sloan or MD Andersona, all are great. I was 49 when diagnosed last year. Choice was easy I had a 3+4 on 3 of 15 cores all in one spot. I had surgery in Novemebr and was up graded to a 4+3 but all contained. That said I do not know if I had micro metastisis only time will tell. Your PSA is high but could be due to several things including some BPH which is not cnacer. It could also mean you have a more aggressive cancer that was not sampled. They only take a very small portion. At our age the possability of side effects of radiation down the road and re-occurence made surgery my choice. I would know exactly what I had and if it was coming back. Surgery was easy, had nerve sparing and never needed pain meds except night of surgery I took one. Was dry out of the gate exceot for a few drops here and there which stopped in under 2 months. ED is being handled without drugs. Last few weeks things are coming back well I would get the book survivng prostate cancer by Jack Walsh and read it twice. Question, did your biopsy show perinueral invasion? If so you have about a 35% chance of having a higher grade cancer than you saw on your biopsy. Even without it you have over 20% chance you have a higher grade. All my DRE's which I had (7) were normal yet it was on both sides when found. Good luck and keep us posted.
I do have perinueral Invasion on one sample.
My urologist did tell me it is a high grade cancer.
So what does high grade mean exactly?
Im still mulling over my options. I asked the urologist if he thought i could wait until the first of the year for a decision, but he didn't seem to think I should wait that long.0 -
Gleason 6 = High Grade Cancer?AMichael50 said:Thanks hunter49
I do have perinueral Invasion on one sample.
My urologist did tell me it is a high grade cancer.
So what does high grade mean exactly?
Im still mulling over my options. I asked the urologist if he thought i could wait until the first of the year for a decision, but he didn't seem to think I should wait that long.
Hi, AMichael
Sorry to read about your diagnosis. I am completely flummoxed by your doctor's statement that you had a high grade cancer. A Gleason 6 is, by definition, a low risk cancer. Frankly, the term "high grade" is not standard and your gentle doctor may be attempting to build an emotional case for surgery which, of course, he would be honored to perform on you.
Perhaps you misheard him or read more into his briefing than what was actually said. Prostate cancer is usually defined as low risk, intermediate risk, or high risk. Gleason 6 and below is considered low risk. Gleason 7 is intermediate. Pathologies of Gleason 8 and above are classified high risk. Ask your urologist what "high grade" Gleason 6 prostate cancer actually means and which classification protocol does such a description come from?
The PNI may or may not be worrisome. It's not unusual. All it means is that at least some of the cancer was from a sample that was adjacent to the space of some of the nerve bundles that surround the prostate gland. Hence the term: perineural invasion. While some believe that PNI suggests an increased likelihood that the cancer has escaped the prostate, there is no clear consensus on this and most pathologists feel that PNI, in fact, is a poor predictor of the course of this disease. Frankly I would be more worried about the number of samples that contained cancer, in your case more than 50%, than anything else.
As a young man the treatment decisions you choose at this point will have a significant impact on the quality of your life so whether you choose RP, some form of radiation, active surveillance, or some other treatment choose carefully and make sure you fully understand both the good points and potential side effects of each.
I share Swingshiftworker's perspective on surgery for a Gleason 6 (or any other Gleason score for that matter). In my own case with a Gleason 6 but much lower volume of positive biopsy samples, I elected to treat my cancer with SBRT and chose the CyberKnife method of delivery. I have had no adverse side effects.
Before you make a choice I hope you take the time (and spend some money) to seek second opinions from other prostate cancer specialists that include radiation oncologists as well as surgeons and oncologists that support and specialize in AS. It may well take you into the New Year to get through these appointments and I would seriously question why your present urologist is trying to hurry your decision with a Gleason 6.
Best to you.
K0
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