Newly diagnosed with Prostate Cancer
Hi, I was recently diagnosed with Prostate cancer and I am attempting to do as much research as possible. One thing I found to be consistent in the research....is the inconsistency of all the information. I know there is no "one size fits all"..but I was seeking some insight from men who are currently in my situation, or close to it...or men who have already gone through a treament option. Main purpose is to solicit feedback from men that are 47-55 years old who have undergone treatment...or are about to.
He is my particular background:
-49 yrs old
-gleason 6, 3+3
-found in 2 cores, involving 10% of each core
-DRE normal
-PSA of 2.8
My original diagnosing urologist recommended a robot assisted protectomy. I am set to have a 2nd opinion with MD Anderson in Houston in early November. Thinking about seeing Dr. John W. Davis there. If figured I would go there as my sister has been treated there with various cancers over the last 8 yrs with great success. Also, I figured since they do most of the recognized treatment modalities...they will not push one over the other. At least this is my thought. In my discovery, I at times wonder about doing the active surveillance due to the complications (urinary, ED)...but is seems scary to just monitor a cancer inside you...so I am wondering if those who have done this, how is it working out. And for those have done the prostectomy, are the complications significant. Recently, Dr. Drew Pinsky and Ben Stiller just came out that they had low grade robotic prostectomies...apparently with great success.
Sorry for the long post..but any help would be appreciated.
Israel
Comments
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Getting rid of the cancer
Israel (is it you name or residency?)
Welcome to the board. This is the beginning of your journey but you have started it the best way by researching and getting second opinions before deciding.
There is a site named Yananow where you can read many stories of patients/survivours (past and present situations) sorted by the characteristics of their case, age, type of treatment, location (hospital, etc), which may answer your query. However as you say it "there is no one size fits all", and many of those written past experiences may have been based on diagnosis that are absolete today. Here is the link;
http://yananow.org/query_stories.php
My opinion regarding the treatments for prostate cancer is that they have not changed much since my prostatectomy of 2000 at the age of 50 years old. They still do not address the real problem which is to treat the cancer itself, but instead they look for means of eliminating it by getting it out of our body dissecting the infested tissues/organ, or try to burn, freeze or intensely shake the tissue where cancer may exist.
Surely these sort of management will affect the whole area being treated so that risks and consequent side effects are at play, and these issues should also have a prime position when deciding on an option. One can be cured but become handicapped, and I think that the young patients with long life expectation (spans) are the ones at higher risk for loss of quality living.
Your short story above is typical. The initial doctor we visit is a urologist (doing the biopsy) so that he would recommend his trade, surgery. The next doctor in your list is again an urologist (Dr. John W. Davis) which logicaly will again recommend surgery, even if you trust the MDA institution. There is nothing wrong in obtaining opinions from the same line of doctors but I think you should look for opinions from specialists from other modalities too if you want to get a fair answer. In particular, they should not be members connected at the same institution (they would not put colleagues choices at jeopardy).
In any case, all these physicians will provide you recommendations based on collected information on your case. And this is where all the trust starts. An erroneous diagnosis could lead to an erroneous choice, even if our preferred doctor has loads of experience. In fact doctors can only assure good practice. The elimination of the cancer is something else.
I wonder if your doctor has given you a clinical stage. Have you done an image study? How about symptoms and other tests (histology of PSA)?
Prostate cancer can be an hereditary case in the family. You have commented about your sister's cancer experience so that I wonder if she had breast cancer which could be related to the same gene of yours. This can play a role in the decision of the therapy too, if found to be aggressive.
Gleason 6 is the lower in aggressivity and this result could also be subjected to a second opinion. This is a matter you could request from Dr. Davis to obtain a review of the slides by a pathologist at MD Anderson. You can also inquire about the newer image exams using choline based contrast agents and PET scans. These are the best at present times for a more reliable conclusion of our status.On the drawingboards there have been some investigations looking for the "Silver bullet". They are closer now than 16 years ago (my experience) to have a therapy leading with the cancer itself. It is a sort of stealthy missiles sent directly strait to the cancerous cells and kill. One of them is called LU 177. You can try reading details in the net. Sometimes I think that it may be worth to postpone a radical and give time for the sake of having a better way to deal with the bandit.
I understand your anxious in getting rid of the cancer instead of monitoring it inside you (your words). But I would recommend you to proceed with coordinated approaches, researching about all possibilities, their risks and side effects, till you gain the confidence to advance with something. Make a list of question to each consultation and discuss the details with your wife/family. You may lose the possibility in fathering a child again.
I am laying these negative comments without any bad meaning, just as cautious notes to the newbies. You certainly will choose the best and be successful.
Best wishes and luck. Your posts are never long enough to us.
VGama
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Diagnosed in January at 52.
Welcome, sorry to hear of your diagnosis at such a young age, relaitvely speaking, for prostate cancer.
I was diagnosed in January of the year and oped for Cybeknife treatment which I will elaborate on towards the end of this message as far as my own personal experience.
I am sure you are going to have a lot of responses here and I would echo VGama in that current approaches to just get rid of the prostate, or fry it or freeze seem slightly barbaric though it is current "state of the art". Most men who are younger will choose to have a prostatectomy for a couple of reasons. One - if cancer is in early stage and contianed in the gland, you are effectively removing the cancer. Two - as V noted, Urologists diagnose prostate cancer and urologist do surgery. In your hourney, you will find that many of the specialists will strongly lean towards what they do and many times will discourage other options which is unfortunate. One exception is that conventional radiologists will likely not recommend conventional 8 week radiation treatment as at a young age, the side effects from that over exposure will likely catch up with you over time.
I would not rule out Active Surveillance at your stage. If you search for that on this forum you will find a few guys who have gone down that path and will some moderate lifestyle/diet changes, you may beat this other ways. You have plenty of time at this stage, keep you options open and I am sure you will select the option that is most appropriate for you.
I mentioned Cyberknife, though it is not commonly mentioned in respect to prostate cancer, I felt it was as effective as alternatives with fewer side effects. In my case, I was stage 1A with 2 cores out of 12 and two cores that will adnormal. There was the potential for involvement on the edge of the prostate which is why I chose not to do active surveillance as it gets much more involved to deal with prostate cancer outside of the prostate. Surgery seemed more risky as the nerves sit on the prostate so it was possible that nerves on the side that had potential involvement could be damaged in surgery which increases the potential for long-term ED problems.
I was scheduled for a prostatectomy the day the doctor announced the diagnosis. Lots of time to make an informed decision eh? Well, fortunately, in my pre-surgery screening, I have to get clearance from my PCP who happens to be a pretty good one, at least for me. He recommended I go talk to several specialists and among the half dozen places he recommended was Cyberknife. I originally thought that had something to do with freezing the prostate but after seeing the other specialists I decided to check them out and glad I did.
There are many good articles on different radiation options, cyberknife is a form of SBRT. A little background here.. http://radonc.ucla.edu/prostate-cancer-sbrt
When I visited Phoenix Cyberknife, I had already done a ton of research and for me, I decided that it was the course I wanted to go down and so far, things are going well, my last PSA was around 1.2, from 4.8 pre-treatment and no side effects to this point which was the primary reasons I chose Cyberknife over surgery.
You are and need to be your best advocate in your treatment. Get informed and good luck with your final decision and treatment regimin!
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Similar numbers, except PSA
Welcome to the last club you wanted to join. I joined six weeks ago. I'm 54, Gleason 6, 1 core 35%, T2a, PSA 12, doubled from one year ago. After viewing the MRI results my urologist believes that my 8mm tumor is wholly contained in the prostate so far. I have spoken to my urologist, my radiation oncologist, wife, family, friends, and have searched the internet.
Next Monday I have a consultation with my urologist's partner, who does all of the robotic prostatectomies for their practice. I intend to ask him about a PET scan, which should reveal if any cancer cells actually have left the prostate. I then plan to schedule the robotic surgery with him. My reasons are:
1. My age and relatively good health
2. The belief that the tumor is contained in the prostate
3. My PSA and its doubling rate, which would tend to contraindicate active surveillance and brachytherapy (radioactive seed implant).
4. The ability to have a pathology report afterwards, as further verification of the containment of the tumor.
5. The expectation that the PSA will immediately drop to undetectable, and will indicate that I am cancer free if it stays undetectable.
6. The fact that any side effects from surgery will be immediately apparent and most likely treatable, whereas some side effects from radiation can be delayed for years.
7. My wife and I expect that we will be less stressed, believing that the cancer tissue is gone from my body.
These were our criteria, yours will almost certainly be different. With your numbers, you have time to make a well thought out decision, and your cancer is very curable. There is no need to rush. Consult with doctors from more than one field, with your friends and loved ones, and with other men who have preceded you on this journey, then make your decision and don't second guess yourself.
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active surveillance
As a man who was diagnosed 7 1/2 years ago with two of twelve cores with five percent involvement in each, and who has and continues to follow an Active Surveillance protocol, I can speak to this treatment decision.
First, if you click my name to the left, you can see the protocol that I have followed, and other key pertinent information about appropriate testing, and information about Active Surveillance. If you meet the requirements for Active Surveillance, you may be able continue with this treatment decision for life, or an extended time period. During this time, one can develop knowledge in selecting the "best active treatment" alternative, only if necessary. Additionally there are new treatments that come on board, in addition, there are better diagnostic tools that come available....For example, in my case there are newer and better ways of monitoring the Active Surveillance protocol, so a patient will have more confidence in surveillance that he undergoes.....in my case, I now, am monitored with first a T3 MRI that determines suspicious lesions , then a three dimensional biopsy machine that can lock into the results of the MRI and take cores from the suspicious lesions.The results from this procedure is better than a random biopsy that most men undergo.
Where I am treated there is a man who was 35 at entrance to the program....he is now well into his 40ties, and has sired a child.
The criteria for selection to be actively monitored in low level diagnosed cancer, is somewhat similar from one institution to another. For example at Johns Hopkins, two cores or less out of twelve, with less than 50 percent of each of the core involved. PSA less than 10. PSA , prostate size ratio less than 0.15 thus my previous question to you about prostate size.
It is very important to have a second opinion of the pathology of your biopsy, since determining Gleason scores are subjective, and the doctor who leads my support group tells me that in his experience about 5 to 10 of the Gleason results are changed at a second opinion by a world class pathologist such as at Johns Hopkins. Believe it or not your number may be changed and indicate that no cancer exists.
It is also very important to have a T3 multi-parametric MRI to see if any cancer is found outside the prostate....this is critical to a treatment decision....since you are going to MD Anderson, let them do this, since these medical centers like to do their own testing, and do not place confidence on the results from other institutions.
I don't know about MD Anderson, but institutions do push one treatment over the other. You are the CEO of your case, and need to speak with experts in each treatment type, do your research...read books..........attend support group (USTOO is an organization that sponsors local support groups, so google them and find support group(s) in your area)
Keep on posting and asking us questions, we are here for you.
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I am glad I came to this site
I am glad I came to this site. Your experiences and opinions are enormously valued and give me great confidence I...or all of us will overcome this. I have not had an MRI at this juncture...and I am thinking they may want to redo the biopsy as they mentioned they may want to do their own diagnostics and to plan to be there up to 4 days. My sister started with breast cancer, which went to the colon, and then to the liver. She had this battle over 8 yrs but is cancer free...after numerous surgeries. She told me when she went to MDA...some of the diagnostics were done again. I am actually looking forward to getting more verifiable diagnostics. Its weird but for some reason I am not worried about this...but my wife is having a hard time with it. How did your wives manage if I may ask?
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Wives
3 words -> communicate, collaborate, share.
PCa impacts both you and your wife, and will continue to do so for the rest of your lives. Just like anything else in your married life, this journey is a shared, or should be, a shared journey. Research together and discuss together, as fear and anxiety tend to be reduced when there is available information to be jointly consumed and digested.
While I do not have any specific information on this, there are focus groups for PCa patients and their wives, and some folks find solace, companionship, and inner peace in joining these groups.
In my opinion, you have come to the right place (this forum), and both you and your wife can benefit from sharing your experiences with us and having targeted conversations on all of your questions.
We are here for you and your wife.
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GladIgarza said:I am glad I came to this site
I am glad I came to this site. Your experiences and opinions are enormously valued and give me great confidence I...or all of us will overcome this. I have not had an MRI at this juncture...and I am thinking they may want to redo the biopsy as they mentioned they may want to do their own diagnostics and to plan to be there up to 4 days. My sister started with breast cancer, which went to the colon, and then to the liver. She had this battle over 8 yrs but is cancer free...after numerous surgeries. She told me when she went to MDA...some of the diagnostics were done again. I am actually looking forward to getting more verifiable diagnostics. Its weird but for some reason I am not worried about this...but my wife is having a hard time with it. How did your wives manage if I may ask?
I'm glad you have joined us here Israel and that the responses have uplifted you thus far. MD Anderson will give you the best technical information on earth; we can give real-world insiight into living this experience, and comradship, in addition to substantial medical awareness.
I would comment on the mention of your wife. I began the cancer experience in 2009 with advanced lymphoma. About 8 months later, full remission, although especially with lymphoma, which is much given to recurrence, you are always "looking over your shoulder." Those eight months on extreme chemo and continuous scans were hell. But I am certain they were HARDER for my wife than for me. I essentially slept all the time, while she had to handle everything: All household affairs, driving me to and from infusion, trying to get me to eat or at least drink -- everything. Verifying meds, schedules. Then, in December 2014, the prostate cancer diagnosis.
Both of my cancers were harder for her than for me. In a weird sense, I rightly had the thought regarding the doctors and nurses: "You guys have to do all the work; I just have to lie here and take it."
Do not underestimate or cease to thank a caregiver in this ordeal. Their value is infinite, and their stress is great. Communication is the key.
Be direct: 'Clear the air' regarding the tough questions like, "Do you think I am dying? What is on your mind ? How can I help YOU ?" And let her know what you think regarding these issues.
Clinically, you are quite young for PCa, and have results that indicate very curable disease. The treatment part of this will be over for you within a few months at the most, and this will fade into history for you.
max
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Being grateful
I did not give much importance to the initial period of tests and exams until being told that I had prostate cancer, approximately four weeks after the instigating PSA. My wife and I were staying at a luxurious hotel (provide by my firm) so that we were enjoying the spectacular facilities. In fact I was in denial and though the whole process being over cautious due to the policy of my firm in having only fit employees in the management of projects. I felt being fit, was symptom less and never thought that such "high" PSA of 22.4 (negative CT, MRI, x-ray, Gamma-ray, etc) would be the start of the most scary, foggy and ambiguous period I've ever experienced. I was dealing with the unknown.
Without my wife next to me things would have turn sourer. She was part my mentor, my friend, my partner and followed all steps together. She suffered as well and I am grateful for the time she dedicated to this cause when researching, at consultations and later at the hospital. She was wonderful and the ordeal brought togetherness. I love her.0 -
Choices You Need To Conisder:
The following is a duplicate of one that I posted here: http://csn.cancer.org/node/305388
. . . People here know me as an outspoken advocate for CK and against surgery of any kind. I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10). You can troll the forum for my many comments on this point. Here are the highlights of what you need to consider:
1) CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer. Accuracy at the sub-mm level in 360 degrees and can also account for organ/body movement on the fly during treatment. Nothing is better. Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding. Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.
2) IMRT is the most common form of external radiation now used. Available everythere. Much better accuracy than before but no where near as good as CK. So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding. Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed. I think some treatment protocols have been reduce to only 20 but I'm not sure. Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.
3) BT (brachytherapy). There are 2 types: high dose rate (HDR) and low dose rate (LDR). HDR involves the temporary placement of rradioactive seeds in the prostate. CK was modeled on HDR BT. LDR involves the permanent placement of radioactive seens in the prostate. 1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children. The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive. Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body. Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc. Both HDR and LDR require a precise plan for the placement of the seeds which is done manually. If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects. An overnight stay in the hospital is required for both. A catheter is inserted in your urethra so that you can pee. You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.
4) Surgery -- robotic or open. Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation. Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function). Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body due to the remove of the prostate which sits between the interior end of the penis and the bladder. Doctors almost NEVER tell prospective PCa surgical patients about this. A urologist actually had the to nerve to tell me it didn't even happen when I asked about it. Don't trust any urologist/surgeon who tells you otherwise. Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer. Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.
4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer. You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer. Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it.
I personally could not live w/the need to constantly monitor the cancer in my body. Like most other men, I just wanted it delt with. Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted. I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected. Other men on this forum have reported similiar results.
So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment. The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.
Good luck!
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Which choice?
Hi,
Many choices to choose from as you can see, you and only you(with your Doctors) should decide what is right for you. Some people choose surgery some choose radiation. I chose surgery and do not regret the choice. I wanted to know that the cancer was gone & not lingering somewhere that the radiation might have missed. From talking with my doctors surgery usually give you early side effects(leakage & E.D.), these get beter with time. Radiation usually effects the bowel and bladder which don't show up right away but can develop over time. I doubt if there is any treatment without side effects, if there was we would have all done it. Review the enormous amount of info and them make your decision. I do have some stress incontinents(less than one pad a day) and after two years no E.D.
The penis shrinking problem with surgery is a joke, if you are that worried about it then you have other problems. Your urinary tube is tiisue and will stretch when you get an errection. Cancer is a much more serious problem.
Dave
3+4 =7
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Prostatectomy may or may not remove all cancer
The idea that the cancer will be gone after removal of the prostate is not generally (!) correct. If it were, adjuvant radiation would not exist and neither would salvage radiation. Moreover, cancer cells may have escaped from the prostate (and cause problems later on).
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It is if your doctor and all
It is if your doctor and all the diagnostic tests+biopsy tells you it was completely within the prostate. If it's outside the gland then radiation might be a better option.
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Not all radiation is the same - please get your facts straight
Clevelandguy, I am pleased that you are happy with your choice to have surgery and with its outcome for you. But can you please stop distorting options that are different than your choice! You keep lumping all radiation in one category and that is a complete misrepresentation and for those of us that chose CK it is frankly frustrating to see it misreprsented as "generic" radiation.
As swingshift noted above, there are numerous radiation options available today and some with outcomes as good as best surgery outcomes over 10 years with fewer side effects. Many of the side effects of surgery are manageable and subside over time, but with CK, I don't have those effects currently.
Cyberknife does NOT affect the bowel nor the bladder. It doesn't have the side effects of "traditional" radiation. As Old Salt noted, surgery also doesn't "guarantee" the removal of the cancer. For those who choose surgery, a pathology report of the removed prostate can predict that it was contained in the prostate after removal but if it was a guarantee, why would you continue to monitor your PSA level for the rest of your life? Answer, because it is NOT a guarantee, only a predictive presumption based on evidence of no cancer along the periphery of the prostate in the pathology report. If it is, guess what, you get radiation ANYWAY and so your prostate was removed so you could receive radiation? I decided not to have that risk, as in my case, it was possible that the periphery was "involved" based on MRI. Every case is unique.
I had CK and I also get my PSA level checked regularly and so far so good. I just did not have the complications of surgery to deal with post treatment which was the determining factor for me.
All the treatments for prostate cancer in early stage are designed to remove the disease, it isn't unique to surgery.
I am hopeful that over the next few years with advancements in different cancer treatments that the fact that we had to either remove or radiate our prostates for a cure will be considered barbaric but, we got diagnosed too early for that outcome!
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You guys are getting me confused
Ok guys, did not mean to cause a little rucus. I am glad....at least it appears that way...that each of you were/are committed to your treatment choice and were pleased with the outcome. Which at the end of the day is all that matters. I am new here, but I would think what would be best is for each individual to give their story...and be 100% honest as to what worked for them...and what did NOT work for him. Just lay the facts out without really questioning anothers views of the treatment(s)....which they themselves have never experienced first hand. Take the penis shrinkage...I have read and researched virtually every day since my diagnosis about numersous treatment options..including the RARP...and at no time has this ever come up. Also, I have now personally talked to 4 men who have had the RARP..and went to a focus group last week..with others, that have had a RARP amoung other treatments...and not one has mentioned penis shrinkage ever even when specifically asked. All I am saying, please do not knock a treatment unless you yourself experienced the effect of the treatment.
What I have learned is there is no silver bullet. You just have to chose a treatment you believe in...and trust it. which it looks like you all have.
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Hi All,
Hi All,
No rucus hear but there are two types of treatments in general categories, surgery or radiation. Surgery is removal of the organ and there are different types of radiation treatments of which CK is one of them. Each type has their own side effects that you need to consider for your particular case and lifestyle. Research all the info and decide which one is for you based on what your doctors say and your own personell choice. Like I said surgery worked for me but radiation could have also worked. I had to spend ovenight in the hospital and had a catheter for about 10 days(the worst part). My doctor prescribed Cialis for several weeks to improve the blood flow in the healing area. PSA has been zero for two years(hope it stays that way). Your life, your choice, read, study and look at a lot of the posts, this will help you decide.
I did not "nock" any treatments just passed along the info I have learned & what my doctors told me on the pro & cons.
The American Cancer Society has a good reivew of the different treaments and their side effects.
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penile shrinkage
Israel,
Just responding to you post about penile shrikage,
Here are results of a google search, that discuss this shrinkage, and activities to help.
http://www.harvardprostateknowledge.org/preserving-penis-length-after-radical-prostatectomy
http://www.prostate.net/sexual-health/prostate-treatment-and-loss-of-penile-length/
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shrinkagehopeful and optimistic said:penile shrinkage
Israel,
Just responding to you post about penile shrikage,
Here are results of a google search, that discuss this shrinkage, and activities to help.
http://www.harvardprostateknowledge.org/preserving-penis-length-after-radical-prostatectomy
http://www.prostate.net/sexual-health/prostate-treatment-and-loss-of-penile-length/
Just had surgery on November 2nd robotic assisted, catheter removed today, leaking a lot.
i do not have a penis anymore. I just have a pee hole in my pelvic wall. Even penis head disappeared completely.
Already regretted robotic surgery, very painful post op time, never experienced so much pain in my life.
I am 51, Gleason 7 (4+3) 1of 12 positive left base lateral. Incidentally dx after TURP with Gleason 6.
MK
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Penis Doesn't "Shrink" -- it "Retracts"Igarza said:You guys are getting me confused
Ok guys, did not mean to cause a little rucus. I am glad....at least it appears that way...that each of you were/are committed to your treatment choice and were pleased with the outcome. Which at the end of the day is all that matters. I am new here, but I would think what would be best is for each individual to give their story...and be 100% honest as to what worked for them...and what did NOT work for him. Just lay the facts out without really questioning anothers views of the treatment(s)....which they themselves have never experienced first hand. Take the penis shrinkage...I have read and researched virtually every day since my diagnosis about numersous treatment options..including the RARP...and at no time has this ever come up. Also, I have now personally talked to 4 men who have had the RARP..and went to a focus group last week..with others, that have had a RARP amoung other treatments...and not one has mentioned penis shrinkage ever even when specifically asked. All I am saying, please do not knock a treatment unless you yourself experienced the effect of the treatment.
What I have learned is there is no silver bullet. You just have to chose a treatment you believe in...and trust it. which it looks like you all have.
Igarza: I think I laid out a pretty impartial summary of all of the major choices that a man with "early" PCa has to consider when he is making his treatment choice. The negative implications of each choice are clear and, whether you believe me or not, there are very few with regard to CyberKnife.
As for the "shortening" of the penis. I did NOT say that the penis "shrinks." What I said is that when the prostate is removed, the space between the bladder and the interior end of the penis has to be filled. The way it is filled is by attaching the bottom of the bladder to the interior end of the penis which results in a "retraction" of the penis into the abdomen which makes the exposed part of the penis shorter.
This ABSOLUTELY happens to every man who has surgery and is something NO MAN wants to talk about. I attended a men's group at Kaiser where I specifically asked this question and the two men who had surgery both told the group that, YES, it happened to them BUT they were clearly embarassed to discuss it.
It's basic anatomy and physics. The prostate is located between the bottom of the bladder and the interior end of the penis. If you take out the penis and don't put something in to fill the space, the only result will be that the exposed end of the penis will be retracted into the abdomen towards the bladder.
This is NOT bs. Just think about it!!!
BTW, the reason why many men suffer chronic incontinenece ofter requiring the implantation of an artificial uninary sphnicter is because of damage caused to the bladder sphincter when it's attached to the interior end of the penis. Check it out. There's also a sphincter attached to the interior end of the penis which is lost when the surgery is done and, if the sphincter at the bottom of the bladder is damaged, men will have no end of problems with leakage. Fair warning.
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