New Member - Just Diagnosed With Prostate Cancer

I just met with my doctor last Friday to discuss biopsy results and treatment options for prostate cancer. The biopsy results were stage 1 or 2 cancer in three out of twenty-one samples appearing in both nodes of my prostate. The cancer is a 3 + 3 on the Gleason scale. The doctor believes the cancer is very localized.

Because I am a healthy 67 year old, the doctor encouraged me to consider choosing the Da Vinci prostatectomy because he feels it offers the best results and over-all prognosis....but with no guarantees, of course.

I understand common side effects of this surgery are incontinence and impotence. Since I have had ED most of my adult life, ED shouldn't be a much of an issue, but it still is of course. I already use trimix for ED because Viagra and other pills are not very effective for me. Currently I urinate frequently and sometimes with considerable urgency, but I am far from incontinent and surely do want to become so.

I expect the doctor's office to call sometime next week to schedule the surgery. However, I would very much like to hear from anyone with experience with this before I commit to the surgery.

One thing I am curious about is what sex is like if one has no ejaculate. I mean, is it anti-climatical....should be a joke, but it isn't. I am dead serious.

Thanks in advance for any advice,

Prime

 

Sorry about your diagnosis. You’ve joined a club nobody wants to be in, but you’ve found a good place at here at Healing Well. I’ve gotten a lot of great information and encouragement from the people here. They are very knowledgeable and caring.

Please don’t rush into a decision. PCa is a slow growing cancer, so you have time to educate yourself and make informed decisions.

Get a second and maybe a third opinion. You should talk with a radiation oncologist also, because radiation or seeds could be a good option for you. Consider going to a major cancer center for consults; many offer multi-discipline programs where you can schedule appointments with more than one specialist in one day. Travel if you need to.

I can’t stress enough that the experience of the doctor doing whatever procedure you choose is paramount in your outcome. Ask what his numbers are. If he’s won’t say or is evasive – find someone else. You should also get a second opinion on your biopsy slides. A good book to start with is “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.”

Most men recover continence within a year of having surgery. You may find that without your prostate (once you get your incontinence under control), your frequency and urgency will be less. ED is rehabilitated with pills and or injections, so you already have experience with those. Recovery back to pre-surgery potency usually takes 18 to 24 months. After surgery you will not have ejaculate, so it is a dry orgasm, although some men ejaculate urine to some degree. The orgasm itself is still intense some say more intense.

For radiation treatment, you will potentially have the same side effects of incontinence and ED, but instead of happening immediately they occur gradually over time. The guys who had radiation treatment will certainly chime in with better information about their side effects.

Best of luck to you and keep us posted.

Welcome to our forum and brotherhood but at the same time sorry you have to be here. I had my surgery last June and was continent 100% 4 WEEKS AFTER SURGERY.  I had ED before surgery and used Viagra. My ED is now much worse and I also use Trimix now successfully. It can take up to 2 years to get back natural erections and at 7 months now I am seeing some improvement. I find the new dry orgasms to be more intense than before because you are not focused on the ejaculation aspect and my wife says she doesn't miss the mess at our age.

With your Gleason 6 you do have plenty of time to explore all treatment options. The most important decision will be in choosing a doctor whether its surgery of radiation that has lot and lots of experience.  If you go the surgery route a surgeon with a minimum total of 750 Davinci surgeries and who does at least 3 a week is IMHO vital. I think from discussions in this forum the most experienced surgeons have produced the best SE results for the guys in here. My surgeon is part of a partnership that has done over 3000 robotic surgeries and he had over 700 of them as the lead surgeon. The same goes with RT you want to find an oncologist who specializes in prostate cancer. All Treatments will have side effects surgery has them early on and radiation SE can come on several years after treatment. I have a friend who had EBRT 7 years ago and he started having problems with continence 3 years after treatment and is now suffering with severe ED and bowel problems that he says are all related to the PC RT.

Good luck and keep us all informed on your decision.

Terry The Water Guy

Dear Prime:

First of all, welcome to HW.  Sorry you have to be here but I think you will find this is a great place for both support and advice. 

Your story about your doc wanting to schedule surgery right away in not atypical of many men who are diagnosed with PCa.  Your urologist is most likely a surgeon and, as such, most likely has a bias toward surgery as the optimal choice.  Surgery may or may not be for you and you don't need to be rushed.  PCa is a slow growing cancer and from what you have revealed about your stats you have fairly early stage.  So, like G6 said, "take a breath."

You should take some time to get yourself educated.  Read some infomative books like Dr. Walsh's "Guide to Surviving Prostate Cancer", Dr. Strum's book and the Dr. Sholz book, "Invasion of the Prostate Snatchers".  These books will give you a broad specturm of views on our disease.

Also you should not only speak with EXPERIENCED surgeons about potential treatment but also an EXPERIENCED radiation oncologist.  With your age and stats, brachytherapy (seeds) might be an excellent choice for you and you should at least explore it.  Irrespective of anecdotal stories about "radiation problems" or "dying on the surgical table" you should probably ignore the anecdotes and focus on the facts.  That is, for early stage PCa the cure rates for brachy are equally as good as surgery and the SE's are considerably less onerous.  Get yourself educated and make an informed choice is my best advice.

Good luck,

Tudpock (Jim)

At age 67 I personally wouldn't choose major surgery when there are far less invasive treatment options. As has been said you have plenty of time with your dx numbers don't let an impatient uro rush you into anything. Explore brachytherapy is my recommendation. With PCa you need to weigh in success rates, mortality rates, age. side effects and how they will affect your quality of life. If you do choose radical surgery make sure you pick an experienced surgeon for after any treatment, you have to live with the results, there aren't any do overs.

Primemuscle...there are very,very few of the guys who have had the same type of surgery that I had 7 months ago...CRYOGENIC surgery. I would urge you to also look into this as one of your alternatives. My PSA at this point has dropped to 0.002 and the last side effect, the ED, seems like it is really getting a LOT better. Advantages are less invasive, little (almost no) bleeding,fast recovery from incontinence,little pain ( I took a half dozen Tylenol over about 3 days,that's all) . It is a very viable alternative to the other surgery options...I am very happy with my results at this point.

Prime,

I was also 67 when I was diagnosed. You have received some great advice above. If I were you, I would not even think about making a decision until you have talked to an oncologist and a radioligist. While cure rates are the most important, be sure you understand a lot about side effects and QOL issues. You will find a lot of helpful information on this site.

Best wishes in your decision making process,

Joe

Incontinence is a common side effect of RP, which is also commonly short-term. ED tends to be the one more of us (fine - me) worry about, and more prone to be long term at a higher percentage, so you've got a step up as you're already on tri-mix, so you have that covered, whatever happens.

While there are a few guys who have been dry since the catheter came out, a few months up to 6 months is more typical, with some folks taking as much as a year, and a few guys who still have a problem at that point and need to think about further options, some of whom you'll find around here. I think the numbers for long-term incontinence are around 2%. I'm past 3 months and still leaking, but not much.

If you are considering surgery at all, read up on Kegels and start doing them now. If you ultimately choose some other path, no harm done. General exercise/walking is also beneficial (both specifically to surgery/recovery and in general.)

Orgasm is really quite similar - sometimes really dry, sometimes a bit of weepage presumed to be from the Cowper's organ/gland, sometimes (less delightful) spurting urine. I'm hopeful that the latter one will go away more as time passes, and I am voiding beforehand - but the kidneys don't stop. There is life in Willy without drugs, but he's still very slow to function - OTOH, functioning at all is a good thing at this stage. I do sporadically apply drugs (having done a month of daily dosing to begin with.)

Prime –150 is not enough! There are definitive studies that demonstrate better outcomes if your surgeon has done 250+ procedures . A radical prostatectomy ( open or robotic) is a very complex operation, one of the most difficult surgeries in medicine. If you choose surgery, in my opinion, you want someone who’s done over 500 of that particular procedure ( open or robotic) and you want someone who does at least 3 per week.   My surgeon (at the time of my consult) had done over 2,500 open RPs and 1,200 robotic RPs.

My wife was also in favor of surgery when we first started this process. Hopefully she (your wife, not mine!) is going along with you on the appointments. Take your time, don't rush and find the best doctor you can for whatever procedure you decide on.

150 is not even out of the learning curve. This was told to me by a surgeon who had done some 600. I went with someone who has done thousands. If you stick with surgery, I really think you owe it to yourself to at least visit one or two high volume surgeons. You are going to do this once and it is going to consume 24 hours of your life, you should go with the best available.

Prime,
no need for me to add to the advice, it's all been said in prior replies.
just want to wish you well on your journey. I hope your recovery is complete and speedy.
AB

With a Gleason 6 you have a condition which some doctors would prefer not be labelled cancer as the term scares men into doing Surgery

The book that influenced me the most is The Invasion of the Prostate Snatchers by Dr. Scholtz and I also visit www.prostateforum.com of Dr. Charles Myers who is my consulting MD

I am 60 with my first biopsy gleason 7 (3,4 ) in February 2011PSA 9.0 and July 2011 second biopsy 6 (3,3 ) PSA 6.9 and 2 out of 12 cores positive PSA .
Surveying and researching all the options my choice , and three other men ages 53 to 58 with Gleasons ranging 7-9 here in Toronto decided to go to St. George Hospital in Bad Aibling Germany to be treated by Dr. Douwes who uses Radiofrequency Transurethral Hyperthermia ( oncothermia ) + 6 months Hormone Therapy


Four months after treatmentt I am now .02 PSA and will be soon be having an MRI to confirm the cancer is gone

Most Doctors here in North America consider Hyperthermia experimental but it combines two proven FDA approved treatments to kill cancer and the main benefit is that this treatment has NO significant long term side effects-and if the cancer does return you can still have surgery or RT. This clinic has been successfuly treating PCA for almost 20 years and they treat about 200 men a year from all over the world - Cost is about $11,000 - half of HIFU here in Toronto


This a viable alternative for those with low to Intermediate risk Prostate Cancer seeking an Intermediate level of Treatment ( with potential full cure ) rather then the all or nothing approach of RP or Radiation vs Active Surveillance
Ezra