Medical Forum / Diseases and Disorders / Prostate Cancer / December 2006
Thank You - Re: Shrinking Penis
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Norman - 30 Nov 2006 04:34 GMT I want to sincerely thank all those of you who responded to my earlier post regarding the issue of the "Shrinking Penis" following RP. I have been completely blown away by the helpful, well written advice and extensively researched material you have provided me along with in some cases offers of personal advice. I was afraid when I originally submitted this post that I would not be taken seriously or would be a target of ridicule but I just felt compelled to put all my concerns out there to see what happens. I was having a very bad day at the time and experiencing extreme anxiety and consequently wrote some stupid things that I shouldn't have but you classy folks have set me straight.
Thanks again for all the useful information and heartfelt compassion for my situation, I really appreciate it. I will keep you posted on how it all goes in a couple of weeks or so.
Thanks again, Norman
I.P. Freely - 30 Nov 2006 05:55 GMT > I was afraid when I originally submitted this post that I > would not be taken seriously or would be a target of ridicule Naah. We're all standing at least a LITTLE closer to the can these days. It's no biggie.
Alas.
I.P.
Jim - 30 Nov 2006 22:20 GMT > > I was afraid when I originally submitted this post that I > > would not be taken seriously or would be a target of ridicule Dear Norman
I have much empathy for your situation. The prospects of total or some degree of impotence and incontinence resulting from treatment of prostate cancer are certainly an assult on one's manhood. I know this is late in the game because you have scheduled surgery for December 7th. I sense in your e-mail that you are still on the fence and have a feeling of despair with respect to electing radical prostate surgery. The majority of men with prostate cancer are led to believe that surgery is the best chance of achieving a cure, depending on the stage of your cancer. Perhaps that is true in you case--I am not a doctor.
I have been faced with a similar treatment decision after i was diagnosed with prostate cancer in recently. I am in my late 60's, still healthy and somewhat youthful! Diagnosis: PSA 7.1; Gleason 6 (3+3) less than 5% in one of three cores and Gleason 7 3+4 about 10% in three of five cores; 29 core samples taken; negative bone and MRI scans; stage T1c.
I am considering robotic surgery as well as proton (radiation) therapy. I have basically ruled out any other form of treatment. Based on extensive research and discussion with others, I believe the proton therapy is an alternative consideration for treatment, which is much safer, with fewer potential side effects, than IMRT photon (x-ray) therapy. If IMRT x-ray was the only available type of radiation therapy available, then I would opt only for surgery.
Inasmuch as there is no guarantee of a cure with any prostate cancer treatment, one has to weigh (1) the potential side effects of each treatment with the related quality of life that you can expect after that treatment and (2) your assessment of whether the potential treatment you select will hopefully give the same chance of a cure or extend your life for long period of time. If you have not gotten a 2nd opinion on your prostate cancer situation, especially because of the your high PSA, which seems to be a mystery in comparison to your biopsy and normal size prostate, I strongly advise you to do so before you go forward with your radical prostate surgery. You would also be wise to find an excellent medical oncologist who specializes in prostate cancer who can objectively advise you as to your best potential treatment options (surgery or some form of radiation).
Your message, because it focused principally on penis shrinkage from prostate surgery, did not give enough information to fully understand your decision making process. I have the following questions and/or observations:
--Do you have medical coverage for treatment in the United States for either robotic surgery or some other form of treatment?
--Did you get a 2nd opinion with respect to your prostate biopsy. This is very important.
--Did you consult with any doctors other than the doctor who is scheduled to perform your surgery? 2nd opinions are very important, including a radiation oncologist.
--I had almost 30 core samples taken for my biopsy which gives me a lot of confidence as to the stage of my cancer. I question whether 8 samples is enough, especially with your high PSA. Usually a high PSA is an indication of more advanced cancer than your biopsy showed. Surprisingly, you have a normal size prostate. The fact that you were unable to have any doctor explain these inconsistencies should concern you. Were you given antibiotics for a period of time to rule out an infection of the prostate which can raise the PSA level (but not necessarily as high as yours). Also, sex is not advised within 2-3 days before a PSA test as it can also raise the level of your PSA.
The key to surgery is having one of the best surgeons perform it to reduce the risk and magnitude of impotence and incontinency. Are you confident that your surgeon is one of the best? Examples of the best radical prostectomy surgeons are Dr. Peter Scardino at Soan-Kettering in New York City and Dr. John Walsh at John Hopkins in Baltimore. Today, they can perform nerve-sparing surgery if the cancer has not spread to these vital nerves. They can also transplant the sural nerve from your foot in case one or both of the erectal nerves have to be substantially removed. The transplant, however, does not guarantee potency.
Prostate surgery being performed robotically today will soon be approaching 50% of total prostate surgery. It seems to be the wave of the future. The side effects are substantially reduced and the recovery period is much shorter than with radical prostate surgery. In younger men, including you at 59, there is a better chance of overcoming impotency and gaining total continence with robotic surgery. Dr. Ash Tewari, at New York-Presbyterian (Cornell) in New York City, is considered one of the top robotic surgeons as is Dr. Menon at the Henry Ford Clinic in Detroit. Dr. Tewari worked with Dr. Menon before he transferred to New York-Presbyterian. I would advise you to consider contacting one of these surgeons if there is any possibility that you have insurance coverage for robotic surgery and can travel to either New York City or Detroit. Many prostate cancer patients travel a long distance to find the best doctors to treat their prostate cancer.
Your concern about reduction in penis size is understandable for all prostate cancer patients, big or small. The key here, after surgery (radical or robotic), is the need to be on pills (viagara, etc.) and most likely a penis pump. It is of upmost importance to exercise the penis after surgery to regain blood flow and potency as soon as possible, and also to reduce the possibility of shrinkage. So think in a positive manner about this. Living a much longer life is far more important than the size of your penis. In intercourse, quality is far more important than penis size! Most of the stimulation to the vagina needed to bring a woman to orgasm is at the entry point!
There is a big debate today as to whether radical or robotic prostate surgery is any more effective in potentially achieving a cure than radiation treatment. A great deal depends on the stage of cancer you are at. There are potential negative side effects with radiation therapy (i.e., urinary, rectal and impotence) as there are with surgery (impotence and incontinence). With radiation therapy, some of the side effects do not occur until months or years down the road, although the urinary and rectal side effects seem to be relatively low at the top radiation centers. Also, with radiation therapy, it takes upwards of 30 months before your PSA will reach a low point of 0.5 compared with surgery when it is expected to reach 0.2 soon thereafter (both of which PSA readings are considered an indication that there is no cancer at present, although there is never a guarantee that the cancer will not recur years later).
There are two types of radiation therapy: photon (x-ray) therapy which is the most prevalent today and proton therapy which is beginning to emerge. Proton therapy is considered much safer than photon therapy because there is less potential damage to good tissue surrounding the prostate. With proton therapy, unlike x-ray therapy, the radiation isn't at the top dose when it enters the body and leaves the body-the top dose is directed right to the cancerous areas of the prostate. The first proton center to open in 1990 was at Loma Linda University in Loma Linda, CA (their long-range statistics on cancer recurrence are quite comparable to the results from surgery, depending on the stage of prostate cancer you were at prior to treatment). The second proton therapy center was opened in Boston (Massachusetts General Hospital) in 2000. Dr. Anthony Zietman is considered a top-rated and well respected doctor there in charge of proton therapy for prostate cancer.
In the meantime, two new centers have opened in Texas (Anderson Cancer Center) and Florida (University of Florida) this year. The reason for the slowness of this therapy to grow in the U.S. is that each proton center costs approximately $125 million. In the years ahead, additional proton therapy centers are expected to open, including one in Philadelphia. The fact that more centers are being opened, considering the huge cost, is an indication that proton radiation may well be the preferred method of radiation treatment for cancer in the future. Some may well argue that the present IMRT (x-ray radiation) is equivalent to proton radiation, but I am very skeptical of this based on my research. I am very fearful of x-ray radiation, but very open to proton radiation. I have read that if impotence problems occur with any form of radiation treatment, it is much easier to treat them with pills such as viagra, than after surgery if permanent impotence occurs.
With respect to hormone therapy, I would avoid it at all costs and as a last resort considering the horrible side effects of such treatment. Hormone therapy usually leads to very low sexual libido and most likely impotence during treatment or possibly thereafter. Intermittent or short-range hormone therapy, where possible, is considered better than continued long-range hormone therapy. Temporary hormone therapy is often given to men to reduce their enlarged prostates (which you do not have) when electing some form of radiation treatment. It is also given to men with higher Gleason scores (especially over 7) and with a high PSA; in any event, a 2nd opinion should always be obtained before undergoing hormone treatment of any type.
At first, I seriously considered robotic surgery. My first concern was total or some stage of incontinency and my 2nd concern was the likelihood, at my age, that I might be totally impotent for the rest of my life. I do not like the thought of having brachetherapy (seeds) implanted in my prostate which is sometimes followed by IMRT therapy. Even Dr. Scardino, does not look favorably on implanted radioactive seeds in his book. The only other therapy that I am considering, before deciding if I really want to chance surgery and the potential negative side effects at my age, is proton therapy. I feel that it is much safer than IMRT (photon x-ray therapy), will potentially give me an equal chance of a cure compared with surgery, and potentially give me little or no negative side effects compared to surgery. I expect to make a final decision in the near future. My decision making is based on my age (many years older than you), my diagnosis (which is not exactly equivalent to your diagnosis), extensive research and consultation with both surgical and radiation doctors.
Please consider my thoughts above even though your surgery is only a week away. If, after reading my message, you still feel that radical surgery is your best and only choice, then go for it! If you have any questions or want more information, please post them on this website and I will respond promptly.
Best of luck to you Norman. Be strong and think positively! You have many years ahead of you and they may well turn out to be much better than you are anticipating. A large portion of men with prostate cancer live a happy healthy life for a long time after treatment! As they say, most prostate cancer patients will die of something other than their cancer!
Jim
P.S. I was very impressed with the intelligent comments and advice given by those who responded to your original message.
I.P. Freely - 01 Dec 2006 00:04 GMT and wrote and wrote . . .
Holy cow! We need more lurkers to open up like this one! Impressive post in every regard, from facts to empathy to strokes.
I.P.
Mark A - 01 Dec 2006 00:23 GMT > Dear Norman > [quoted text clipped - 193 lines] > P.S. I was very impressed with the intelligent comments and advice > given by those who responded to your original message. I don't specifically understand what you don't like about brachetherapy (seeds).
Merely saying that "I do not like the thought of having brachetherapy (seeds) implanted in my prostate" does not seem like a sufficient explanation. What about specifically discussing the efficacy against the PC and the side effects versus other forms of treatment.
Heather - 01 Dec 2006 02:44 GMT > Dear Norman > > I have much empathy for your situation. >
> --Do you have medical coverage for treatment in the United States for > either robotic surgery or some other form of treatment? Hi Jim.....
You wrote an amazing post, but if I may just interject here......Norman lives on the outskirts of Toronto, Canada. He has access to two of the best cancer hospitals in Toronto and there are a few others. I have a feeling he is perhaps going to one in his community or Oakville.
I was curious because of his sig and looked up his IP numbers, which is how I knew he lived not too far from Ron and me.
I only state this because he seems not to be answering. But you went to an enormous amount of research and I thought I would at least answer that one question for you.
Cheers....Heather
Jim - 01 Dec 2006 17:16 GMT > Hi Jim..... > [quoted text clipped - 11 lines] > > Cheers....Heather Hi Heather
Thanks for the compliment and taking time to respond! Since I have prostate cancer, I want to be helpful to others, especially men like Norman whose first post indicated extreme dispair. By effecftive networking on this website and other prostate cancer message boards, we can greatly help each other pre-treatment and post-treatment. I have learned a lot from message boards and there are many good ones.
I hope that Norman does see my message. While he may have good hospitals and doctors in toronto, he did not seem to be able to consider robotic prostate surgery as an option because, unlike the USA, it appears that Canada has not yet reached this state of the art in prostate surgery. I wanted him to know that close by in the USA, he could get top notch robotic surgery by two surgeon that I mentioned. I just hope that Norman isn't panickng and reluctantly going under the knife on December 7th for radical prostate surgery because he feels that his time has run out and he has no more time to explore other options, if feasible. He left a lot of unanswered questions in his post and i felt compelled to respond to him.
All the best
Jim
Heather - 01 Dec 2006 18:32 GMT Hi Jim.....
I took a quick Google and there are two hospitals doing robotic prostate surgery in London, Ontario.....not all that far from where Norman is. I got the impression as you may have....that he was just going along with whoever did the RP's in his area, which is why I wondered if he had contacted Princess Margaret or Sunnybrook Cancer Hospitals in Toronto.
As you said....there were a lot of unanswered questions. But I couldn't reach him via private email. Hopefully he will return and say hello and answer some of the questions.
All the best......Heather
>> Hi Jim..... >> [quoted text clipped - 45 lines] > > Jim Norman - 04 Dec 2006 19:13 GMT Thanks again for your wonderful, helpful and heartfelt responses,
To answer some of the questions various respondents have asked (particularly Jim and Heather, see previous messages below), yes I did get 2nd. and 3rd. opinions. My first uro at Toronto East General said I had an aggressive cancer that required an aggressive treatment such as RP followed by Rad in combination with HT. That sounded much too drastic considering my biopsy results and small size prostate gland.
My 2nd. consultation which my wife also attended with me was with a radiation oncologist and G.U. Site Group Leader at Toronto's famed Princess Margaret Hospital which totally specializes in Cancer research and treatment. I was not impressed. I was told I had an aggressive cancer that needed an aggressive treatment, (funny, I think I heard that somewhere before). It's like these guys were reading from the same script. His opinion was that if I decided to go with IMRT I needed Rad plus 3 years of HT but strongly suggested it would be better for me to go the RP route instead. He explained that removing the prostate gland was really the only way to know exactly how bad my PCa actually was and that they could also check the lymph nodes at the same time.
When I asked about the affects that IMRT + 3 years of HT would likely have on my sexual potency I was informed that during the HT my libido would be seriously affected and due to the combination of the Rad + 3 years of HT treatments I would most certainly be impotent by the end of the combined treatments at 36 months. When I further asked if that condition would ever improve over time he said "no, very unlikely". To further impress this point on me he stated that "Prostate Cancer is bad!". I was totally devastated. Although I put on a brave face for the sake of my wonderful and supportive wife I was in total turmoil inside, my stomach was in knots, I had that uncomfortable sinking feeling, my head was just swooning (felt like I just consumed 3 double Scotches in 10 minutes), and I felt a deep depression coming on strong, (had to get Zoloft from my family doctor a few days later). I left that meeting wanting to throw myself on the subway tracks.
The bad news for me, apart from the impotency problem and losing as much as 2" from my penis (when it's only a little under 5" with a strong and firm full erection to begin with), is that even if I have RP I will still likely need IMRT for a satisfactory cure. I really do not want to have to go through HT and am not willing to consider this option at the present time. This whole thing is extremely difficult for me to deal with.
The reason I decided to go with the uro/surgeon in my community (yes Heather you nailed it exactly..... how did you do that?) is that in this geographic area he is considered 'the best' and a top notch surgeon in this field. He came highly recommended from people I spoke with. What impressed me mostly however was his apparent genuine concern for my overall well-being and he honestly seemed to understand that there is a human being attached to my prostate. He offered me counselling, (which in hindsight I should have accepted but declined), and he seemed to have the right answers to our questions. His practice also provides various sexual rehab therapies following surgery and he appears to be considerably knowledgeable in this area. My only criticism of him is that he didn't mention the penis shrinkage issue to me although for most men of average size this is probably not a cause for concern like it is for me. Having said that however, 2 of this doctors previous PCa patients freely mentioned this fact to me without any prompting on my part so I am guessing that this is somewhat more of an issue than most men will admit to. At least this appears to be the case for these guys.
Best Regards, Norman
(Please be invited to contact me directly if you wish at e-Mail address: northern_scribe@hotmail.com)
> Hi Jim..... > [quoted text clipped - 51 lines] >> >> Jim JohnHace - 02 Dec 2006 16:53 GMT > I want to sincerely thank all those of you who responded to my earlier post > regarding the issue of the "Shrinking Penis" following RP. Norman,
I've been wanting to respond to your earlier post, but this is the first chance I've had. I know you're gtting down to the wire on your surgery date.
I had numbers similar to yours. I researched the alternatives all day every day for over three months. I finally decided on seeds+IMRT. What led me that way was what I learned about Dr. Charles Myers. In my thread from Sept. 7th, I said:
As I am trying to choose between RT and RP, I realized that I have heard of several MD's with PC that chose RT. I'm not saying that no MD has ever chosen RP, I've just not read anything about it.
The one I remembered that really struck me was Dr. Charles "Snuffy" Myers. For those who don't know, he is a medical oncologist who has been involved with PC for years. I went back to his web site and read his story. It is remarkably similar to mine. He was diagnosed in 1999 at 55, I was 57 when diagnosed. His PSA was 20.4, mine started at 20.3 and dropped to 13.8. His Gleason was 3+4, same as mine. He had a palpable lump on his gland where I have none. So, his situation was a little worse than mine, but not much.
You can read his story "The Physician Becomes the Patient" at http://www.prostateforum.com/sample.htm. In it he said he chose RT because the Partin tables show "80-90% chance that the cancer had penetrated the prostate capsule and spread to the fatty tissue surrounding the prostate gland. There was a 9-14% chance that the cancer had spread to the lymph nodes that drain the prostate gland."
He went on to say "I would have been pleased if radical prostatectomy had been a reasonable option. Unfortunately, if you study the Partin tables or other publications on radical prostatectomy, surgery does not
do a very good job of curing men with cancers like mine. "
You can read the rather lengthy thread titled "What about Dr. Myers opinion?".
Here's the net of what I'd like to say. Get another opinion on radiation. Don't dismiss it because one doc linked it with hormones. It doesn't have to be that way. My rad onc suggested I not use hormones because my prostate is only 35 cc. Yours is smaller that mine.
I had my seeding on 10/23. For one week, probably due to swelling, I could not get an erection. After that, everythings working fine. My girlfriend and I have sex several times a week.
I had my 14th of 35 IMRT treatments yesterday. I have a small amount of urinary urgency and that is it. No rectal problems, so sexual problems, no penile shinkage.
My doc is an artist. He has done over 2300 seeding and he uses the latest IMRT with a positioning system called Accu-Loc for extremely accurate beam placement.
My suggestion is that you take your time before you make a final decision. You only get one shot at the primary treatment. There are no "do-overs" in this business.
Whatever you decide, good luck and God bless.
John
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