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I have just been told I have PC, $M question what to do?

daveirving
Posts: 14
Joined: Jun 2011

I am in the stressful process of deciding what to do-expectant management, operation, or radiation.

PSA doubled in a year=3.9 to 8.8 then went down to 7.3. Free PSA .11%. First biopsy one atipical cell. 2nd biopsy normal. 3rd biopsy at Mayo (31 samples)=canser in one sample only, <5% of the one sample, right lobe. GS 3+3+6. Prostate volume 36cc. No lumps can be felt so stage T1c. I am 65 and in good health.

1) I am strongly leaning toward the robotic operation, any sugestions?

2) Dr Igor Frank is my doctor at Mayo Rochester. I have only heard very good things about him. Does anyone out there have anything good or bad to say about Dr Frank.?

3) Dr Frank estimates 50/50 for potency after the operation but he said I would have about a 98% chance to have a sex life after the operation with injections. Can anyone tell me how penile injections before sex worked for them?

I never thought I would be asking these questions but it is what it is.

Thanks, Dave

hopeful and opt...
Posts: 1331
Joined: Apr 2009

is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I've been doing Active Surveilance for the past two and a half years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment. Feel free to click my name for additional detail.

daveirving
Posts: 14
Joined: Jun 2011

Thanks for the input. I have thought about AC but because PC is the number one cancer in men and the number two killer I rulled it out so far. Also, early detection in recient years has changed PC from a killer to a curable desease and AC seems contrary to that improvement in PC care. I am new at this so I am rethinking AC. Thanks again for the imput

hopeful and opt...
Posts: 1331
Joined: Apr 2009

post

hopeful and opt...
Posts: 1331
Joined: Apr 2009

you speak with a specialist in Active Surveillance....hopefully there is one at the Mayo Clinic.

I wonder, did the doctor who diagnosed you, or the surgeon discuss Active Surveillance as a treatement option with you.......if not, they were remiss.

Prostate Cancer is highly treatable by active methods such as surgery, however the side effects can be great.

Active Surveillance does not mean that you are doing nothing; that you are actively watched, and notified if an active treatment is necessary.....if properly done, there are no additional adverse effects than seeking treatment at diagnosis..........you are being closely monitored and are delaying treatment, hopefully for a lifetime.

There are active surveillance programs at many hopitals, and by many physicians....this is a valid treatment option, and in my opinion a very smart one...not being over treated as many men are.

Please feel free to ask any question that you wish.

PS "Thanks for the input. I have thought about AC but because PC is the number one cancer in men and the number two killer I rulled it out so far. Also, early detection in recient years has changed PC from a killer to a curable desease and AC seems contrary to that improvement in PC care"

Actually there are degrees of prostate cancer...., yours is most likely low volume and the aggressive of your gleason is y low, depending on the variety on a molecular level (the reason for active surveillance)......as one of the other posters mentioned, you may have an infection that is causing your PSA to rise.....consider speak to your doctor about treating the infection........additionally, bike ride, sex, etc before a psa causes a rise in psa.

Swingshiftworker
Posts: 634
Joined: Mar 2010

Given your stats and questions, why are you leaning towards surgery?

The risks and consequences of PCa surgery are so extreme that I don't think it should be considered except as a last resort.

Have you considered all of the other options available to you? There are at least 3 forms of radiation (brachytherapy, SBRT & IMRT) that you could choose instead which much less risk and with fewer and less severe side effects.

You have time and I strongly suggest that you take the time to investigate all of the options available to you before you submit to the knife.

Good luck!

BTW, I chose CyberKnife (a form of SBRT) over surgery with absolutely NO side effects in Sept 2010 which so far looks like it has successfully arrested the cancer.

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

Dave

Welcome to the board.
Your stats are indicative of a low risk for recurrence. All treatments seem to be recommended for similar cases.
The PSADT is in the intermediate of 12 months (>18 is the threshold for better) but the initial PSA level for your age (64) was high. BPH may not be considered as a cause because your prostate size is normal at 36cc. PSA density is equal to 0.20 which is above the limit mark of .10 to 0.15 that considers indolent type of cancers.
The spike is typical of infection (toothed edge type) and I wonder if your doctor has suggested you to take a dose of antibiotics.

You may know that treatments for prostate cancer cause side effects, many of them permanent, and such is usually considered when deciding on a treatment. Some of those side effects are acceptable to some guys but there are always the ones that many couldn’t live with.
You should be familiar with all of them particularly, incontinence and ED (your concern) which are typical of radical treatments.

Second opinions on treatments are always recommended and you should be aware that doctors are biased through their own field. Surgeons will surely recommend surgery and so do radiologists for radiotherapy.

In this forum you can get the opinions of many survivors. Here are some I note as important that can answer some of your questions;
Here about Robotic operation (http://csn.cancer.org/node/191271)
Here for Cyberknife (http://csn.cancer.org/node/193176)
Here for Pronton (http://csn.cancer.org/node/189365)
Here for help in the decision process (some posters are biased with their own choice of treatment) (http://csn.cancer.org/node/200207).

You can do your own research in the net or in sites of reliable instituitions.

Good luck in your decision.
Take care.
VGama

daveirving
Posts: 14
Joined: Jun 2011

Thanks fore the feed back. The only option I haven't looked at is Cyberknife. My feeling so far is that I want the best CURE. From what I have been told the only option that has a 20 year track record is RP. Radiation 10 year track record looks good but I plan on living longer than 10 years and I want to be sure I am cured long term. And what about the long turm effects of radiation. With the RP if there are neg. surgical margins I am almost for sure cured (98%). If I am for sure cured I can put up with depends for a few months and even injections befor sex.

That being said I hear what you are saying and I am not sure what to do at this point.

Thanks again

Swingshiftworker
Posts: 634
Joined: Mar 2010

FWIW, there is no certainty of a cure w/PCa whether you choose surgery or radiation.

There have been many failures w/surgery and there have been frequent reports of how the "failures" of surgery have often been much worse than the disease itself. There have been failures w/radiation too -- but not nearly as extreme as those reported for surgery.

The "cure" rate of those treated by surgery vs. brachytherapy and/or SBRT is now essentially the same and, if surgery fails, the only fallback is radiation. So, even if you reject radiation now, you may have to resort to it in the future and just because radiation only has a 10 yr track record doesn't mean those of us who have chosen radiation as the primary method of treatment will only live that long.

I'm 60 and, based on my family history, I expect to live to 90, in which case CyberKnife will have a 30 yr success record. Hopefully, that will be the case and I also hope what ever choice you make is potentially as good for you.

Good luck!

hopeful and opt...
Posts: 1331
Joined: Apr 2009

Just reread a few of your comments. I suggest that you take a deep breath, relax a little..........you are in no rush to make a decision, but you need to keep somewhat busy. This site is a very good place for you to be on the internet...........also look into local support groups, there are all kinds- some information based, some support emotions.

Like all of us you go thru shock for the first few months, so be positive each day. For example if you are religious, go to where there is an upbeat clergyman, makes no difference which religion, do some exercise, relax, do something for others, etc,

daveirving
Posts: 14
Joined: Jun 2011

Thanks fore the feed back. The only option I haven't looked at is Cyberknife. My feeling so far is that I want the best CURE. From what I have been told the only option that has a 20 year track record is RP. Radiation 10 year track record looks good but I plan on living longer than 10 years and I want to be sure I am cured long term. And what about the long turm effects of radiation. With the RP if there are neg. surgical margins I am almost for sure cured (98%). If I am for sure cured I can put up with depends for a few months and even injections befor sex.

That being said I hear what you are saying and I am not sure what to do at this point.

Thanks again

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I agree with the other posters and at a Gleason 6 I think I would look at other options besides surgery. Check into Cyperknife. Others on the forum have had great success with Cyperknife treatments on a Gleason 6.

As far as potency following davinci it is a gamble. It depends on the surgeons skill level and how many of the nerve bundles can be saved. I had Davince...Gleason 7 and am doing fine sexually with the assistance of Levitra about 1 time per week. Worst case yes would be injections. I've read it is similiar to a diabetic injection (Very small gauge needle).
The injection is given by yourself or partner after medical training directly into the penis.

You might also want to check out the website www.franktalk.org. It was started by a man with prostate cancer and penile injections are discussed in detail on that website.

Larry (lewvino)

daveirving
Posts: 14
Joined: Jun 2011

Good to hear you are doing fine with Levitra.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Dave, welcome to the forum that nobody wants to join. Your results show only a very slight amount of prostate cancer despite several attempts to identify it earlier. Your pathology suggests that any one of a variety of treatment options could most likely be successful.

As I am sure you are learning, prostate cancer is one of those diseases where you, the patient, are placed in the awkward position of choosing which treatment (if any) to follow. Unless you're a physician you probably don't have either the training or background to do make this decision shortly after your diagnosis. The issue gets even more complicated as you beging to learn of the widely divergent opinions of the so-called experts on the subject.

I do hope you pause, and take the time to learn more about your disease and the treatment options available to you. As others have suggested already, there are many ways to address prostate cancer at the stage you've been diagnosed and each has its own set of advantages and disadvantages to consider.

A couple of things I urge you to do immediately is to ensure that you have copies of all of the records and medical notations from your urologist, the prostate pathology report, and the doctor notes on your results. I also suggest you get a second opinion on your biopsy sample.

In the first few months after my diagnosis in March 2010 at age 59 (PSA=4.2, 1 of 12 biopsy cores positive with 15% involvement, Gleason 3+3=6, no symptoms, no family history) I met with six specialists, read more than a dozen books and reviewed dozens of studies. I learned that none of the experts agree with each other completely, each of the books presents a different perspective, and studies are often difficult to understand without a thorough understanding of the controls and statistical methodology used.

Eventually it comes down to deciding what your individual priorities are and moving in the direction that gives you the best shot of getting the cancer and well as achieving your lifestyle goals following treatment. Most treatments have some accompanying side effects that include varying degrees of incontinence, erectile dysfunction, loss of penile size, issues recovering from major surgery, potential infection risk, fatigue, and so forth. It's important to understand the the liklihood of adverse side effects associated with each procedure and weigh those against your individual priorities.

Many men, for example, simply want the cancer out of them and choose RP to excise the prostate and be done with it. Others tend to follow a watchful waiting or active surveillance course and make dietary adjustments to maximize their bodies ability to fight cancer, others choose radiation because, depending on the type of radiation used, potentially offers fewer side effects.

In my own case, the ability to maintain a healthy sex life and avoid potential incontinence were the driving priorities in my decision process and I choose CyberKnife radiation treatment. Fortunately, like many others who post in this forum, I have had no side effects whatsoever and there is no evidence that any cancer remains. Other men who post here have had success with prostate removal and many have achieved continence and sexual function within months of their surgery. A few have done quite well with active surveillance under the theory that many tyes of prostate cancer, even when detected by biopsy, are in fact indolent are are never going to pose a threat to their life.

Please take the time to read many of the threads in this forum that address these various options and please, please see more than one doctor.

Best of luck to you,

K

daveirving
Posts: 14
Joined: Jun 2011

I have had a 2nd pathology report done on the biopsy that indicated cancer, same results. I have seen Dr Frank (surgeon) and Dr Davis (Radiation oncologist). One recomended RARP the other Seeds, but they both also said all the other treatments are good also. I am going to check out Proton Beam and CyberKnife. Thanks

hopeful and opt...
Posts: 1331
Joined: Apr 2009

they all want you for treatment...you are a good candidate for all of them.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Glad to read that you are doing your research. As you are finding everyone has different opinions including the doctors! So continue your reseach, select what you think is best and go for it!
A couple more thoughts: You mentioned that you could put up with depends for a few months...This may or may not happen. WHen I had my davinci surgery I was 54. Getting rid of the cancer, Sex life and urinary control were major concerns to me at Gleason 7.
The good news was that after surgery I was having sex again at about 2-3 months with the use of Levitra as mentioned. That was with the Doctor sparing 100% Nerve bundle on one side and in his estimate 60% on the other nerve bundle. Urinary control - I WAS THRILLED! I used a total of 1 pad after surgery and that was the day the catheter came out. No issues needing pads. I might have a slight drip from time to time but nothing major.

The only not so good news....I did have a postive margin post surgery. That might have to be dealt with at some point but still pulling 0's on my psa at just 22 months post surgery.

Another thought -- you mentioned Proton. May father had proton at Loma Linda California back in 1996 or 1997 and is doing well today. He was a Gleason 6. My dads experience was excellent with Proton. Only side effects were fatique, very, very frequent urination and mucus discharge during bowel movements. He is now 78 and has lost the ability for erections but that might be 'old age related' or other factors. He has decided not to pursue with injections or viagra or others means.

lewvino

daveirving
Posts: 14
Joined: Jun 2011

Why did you go with robotic surgery when your dad had such good luck with proton therapy in 1996?

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

My insurance denied paying for Proton. If I would have went with Proton I would have had to pay the expense out of pocket. So went with Davinci instead.

Larry

daveirving
Posts: 14
Joined: Jun 2011

If not Proton, why not another form of radiation? why Davinci?

I am trying to come up with a plan and would be interested in your thought process when you decided on Davinci.

Thanks Dave

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Glad to answer your questions. I had a Gleason 7 (4+3) Pre sugery. As mentioned my first thought was Proton since my dad had such good success with it. I sent my records to Loma Linda Proton center. They did pre-authorization check, etc. then insurance denied. At first I was very dissappointed...but then started looking at the other options and educating myself by reading, reading and more reading! I even had several different appointments with the majority of other treatment options. I did look at another form of radiation combined with seed implants that is being done in Atlanta Ga. When this Doctor ran my numbers through his extensive database he only gave me a 56% change of being cancer free in 10 years following his treatment. To me that was a deciding factor. I wanted better odds. That doctor asked me if I was ready to decide and I told him no that I had one more Doctor to interview (The man that did my Davinci) He asked me where and which Doctor. When I told him he told me...he is one of the best surgeons you will find on the Davinci robot and please tell him hello from me when you see him!

Another deciding factor was the research I did on Davinci. I had received numerous glowing reviews on this Doctor that did my surgery. With the Davinci, I liked the factor of the magnification, less blood loss, etc. Also as you most likely know with radiation it will leave scaring which makes a follow up surgery more complex. So I went with the Davinci Surgery for my first line of defense. Post surgery my Gleason was changed to 3 + 4 (7). Still a Gleason 7 but overall not as bad as the 4 + 3 (7). Also they did find a positive margin which means the cancer went to the very edge of the surgical specimen removed. Is there cancer left behind? Don't know....Dr. Patrick Walsh (Good book on prostate cancer if you haven't read it) Talks about positive margins. I'm pulling 0's on my PSA at 22 months post surgery. If the PSA Does come back then I can start follow up radiation. If I would have had radiation 1st and then a recurrance I'm not sure what my options would have been accept perhaps more radiation or hormone therapy.

That's why this disease is so unique for each person,,,take into account your gleason score, number of cores positive, etc. If you ever want to talk offline just let me know.
We have free long distance calling on our phone plan.

Larry

daveirving
Posts: 14
Joined: Jun 2011

I have more research to do before I decide. I may take you up on that phone call when I put a bunch of questions togeather. Dave

daveirving
Posts: 14
Joined: Jun 2011

I have more research to do before I decide. I may take you up on that phone call when I put a bunch of questions togeather. Dave

Randall72
Posts: 34
Joined: Mar 2011

I just had the Divinci surgery last week. So far doing very well. I was preop gleason 3+4 7a 95% core at the nerve. Took out the prostate and lyph node Going back to surgeon friday, to remove cath. Like Larry said if you choose radiation 1st, and cancer comes back, theres little chance of surgery because of scar tissue form by it.I chose Divinci,surgery on tues.,home on weds., home nurses say im doing excellent. Iam 57 yo ready to retire in less than 2 yrs from the USPS.Just read up,if your married talk it over with her. Good luck Randall

Randall72
Posts: 34
Joined: Mar 2011

I just had the Divinci surgery last week. So far doing very well. I was preop gleason 3+4 7a 95% core at the nerve. Took out the prostate and lyph node Going back to surgeon friday, to remove cath. Like Larry said if you choose radiation 1st, and cancer comes back, theres little chance of surgery because of scar tissue form by it.I chose Divinci,surgery on tues.,home on weds., home nurses say im doing excellent. Iam 57 yo ready to retire in less than 2 yrs from the USPS.Just read up,if your married talk it over with her. Good luck Randall

daveirving
Posts: 14
Joined: Jun 2011

Great news that you are pulling 0s on your PSA,

I am almost ready to make a decision and wouldn't mind talking to you on the phone so you can tell me eather I am being logical or way off base. Is there a way we can talk off discussion board

Dave

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Yes, there is a CSN Email feature. Send me and email there with your phone number. I should be able to call you this evening. We are in Eastern Time Zone and get off work at 5.

larry

Trew
Posts: 892
Joined: Jan 2010

You are such a great case for proton therapy. please consider it. Surgery should be an alternative option- not your first choice.

bdhilton
Posts: 759
Joined: Jan 2010

Radiation like surgery have their own complications...I do not believe there is any “silver bullet” treatment for PCa but many here truly believe that what they had was the best and everyone else should get their treatment is stats are similar…I totally disagree…

I had the “old fashion” surgery at Northwestern by William Catalona back in March of 2010 (with my pre surgery Gleason, PSA and T score I could have had any available treatment and I choose surgery ) I am blessed to have had all Zero post surgery PSA tests. I have been 100% dry from the second my cath was pulled (10 days after surgery) and I have woodies with weeks of surgery…..I am a post surgery Gleason 4+3 and T3b and I could have a recurrence or not…

I would advise you to research and ask lots of questions. Whatever treatment(s) you choose make sure the doctor is one of the best and most important is to truly believe in your treatment….I would also advise you to make life adjustments to your diet (e.g. no red meat, no dairy, drink red wine, etc…) and exercise, exercise, exercise…

The best to you in your journey

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