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Diagnosis of Prostate Cancer - Looking forward.

TitusvilleBills
Posts: 23
Joined: Nov 2011

I only found out on October 13th that I have prostate cancer. My PSA tests were 91 & 110. My Gleason score is 7 (4+3). The bone scan came back clean as did the CAT Scan. I am keeping very positive on an successful treatment plan and have a very strong support network.

I am going through the "hurry up & wait" phase of various doctor appointments as we decide on a treatment plan. My urologist is recommeding surgery with the Da Vinci robot by Dr Vip Patel (Celebration Fl), but is not being pushy at all about this. He simply stated that most urologists would recommend removal since I am 47 years old.

I spoke briefly with Space Coast Cancer Center, and they would not give me a recommendation on treatment. Said possibly may need a combo of surgery & radiation. I am visiting Moffitt Cancer Center this Thursday (11/3) to discuss options with Dr Heysek, and meet with Dr Patel about robotic surgery on 11/9. Of course, my preference is to start something sooner than later (ie before the end of the year). I guess I should be glad that the doctors I am meeting have not pushed for one treatment over the other yet. However, it sure would be nice to get a head nod or two that I am selecting the best option for my case.

I am trying to learn as much as possible so that I am able to make an educated decision. I have read some white papers on Prostate Cancer from Hopkins, and I have a pretty good book "Winning the Battle Against Prostate Cancer" by Dr Gerald Chodak.

I was hoping that anyone that has been done this path already might share with me some questions that I should be asking my doctors prior to making a decision. I have also met with numerous men that have gone through various treatments.

Anyone have a recommendation on the "Triple Prong Approach" (seeds, external radiation and hormone therapy)? My wife and I are remaining very open minded n possible solutions, and really want to take a path that provides the best chances of non-recurrence (anyone have a magic crystal ball :~) ).

Thank you,
Take care
Jim

Appreciate any advice
Thank you
Jim

VascodaGama's picture
VascodaGama
Posts: 1711
Joined: Nov 2010

Jim

The PSA is very high (normal is taken as 0 to 4), and the Gleason score is intermediate for risk of existing metastases (cancer not contained in the prostate gland) and future recurrence. The grade of 4 is indicative that the cancer is aggressive. Nevertheless you got time. Cancer status does not change overnight.

You probably already know that treatments for prostate cancer with the intent of cure include surgery and radiation. Hormonal treatment is palliative but can hold the advance of the cancer for long periods of time. Chemotherapy can kill cancerous cells but the side effects are high so that it is recommended for advanced cases. Other therapies include combinations of the above and/or protocols with immunotherapy. Diet and supplements are also used in the care of prostate cancer.

The best we can do is to educate ourselves on the problem and get several consultations with the various doctors in each type of treatment. Surgeons will always recommend you surgery and radiologists radiotherapy. Medical oncologists are usually the ones that give the fairest opinion.

I recommend you not to commit in your next meetings to any treatment without knowing its risks and side effects. Young guys should be particularly careful because some side effects can cause permanent damage to their quality of live.

To decide on a treatment other elements from the pathologist report are required, such as the number of positive cores in the biopsy and volume of cancer. Other tests are also important like a DRE (digital rectum examination). Your negative CT and bone scan are excellent indications that your case is still localized.
However, the most important aspect in the diagnosis is to ascertain if the cancer can be considered "contained" (within the prostate gland). If extra capsular extension exist or cancer is found in the seminal vesicles or lymph nodes, the classification of such case is "localized" but surgery is not recommended (very low probability of success in getting rid with the whole of the cancer).
In localized cases Radiation has shown to be a better option and it is administered alone or in combination with hormonal therapy.

A proper diagnosis leads always to the best choice in treatments and to a successful outcome. The experience of the doctors and modernity of equipment and facilities are important as well but they come second in line.

I recommend you to prepare a list of question and take them along in your visits to the doctors. Here is a link with info on questions;
http://csn.cancer.org/node/224280

You can find excellent posts in this forum with helpful info to your case.

Good luck in your journey.
VGama

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi VGama
I have read several of your posts in other threads and found them very informative. I compared my list of questions to the list you suggested, and I am glad to say that I had a majority of the questions on my list already, picked up two new from the list, and thought of another new one.

The DRE did not indicate any problems. I have had this tests the past several years, with a "all feels normal". I started to have problems with sudden and urgent uriniation, and went to the doctor for a PSA test. I was surprised with the results.

I am hoping it is localized, but my urologist cautioned that typically with PSA levls as high as mine, that there may be microscopic traces outside the prostate already. I occasionally feel some pressure in my groin area and will share with my doctor, but I have had this previously due a hernias as a kid. Typically goes away after a day so it may be nothing.

Out of curiousity, I noticed on one of the postings from a fellow from Indy, he mentioned something about have to pass gas prior to urinating. I noticed this problems a few weeks back, but thought it was because I was dieting. Any significance on this? I was surprised to see it listed on the site.

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

Jim,

So sorry to read of your diagnosis but you are approaching this with the right attitude. As you must have learned by now, the Gleason score of 4+3=7 puts you in the intermediate to high risk category of prostate cancer. There are a number of viable treatment options but your decision process is going to be trickier than those with either a low or high risk diagnosis.

A couple of suggestions as you prepare for your upcoming consultations. First, I would have your biopsy slides read by a pathology lab that specializes in prostate cancer. It is critically important that you have a very good idea of what you are facing and that you have as much information as possible when it comes time to make treatment decisions.

In particular, you want to examine your pathology report for references to PNI which stands for Perineural Invasion which is the presence or prostate cancer around or in the perineural space which is simply cancer in or near the nerves which surround the prostate and enable a man to have a normal erection. While it doesn't affect the Gleason score, evidence of PNI may indicate an increased possiblity that the cancer has escaped the prostate. It is also an indicator that nerve sparing surgery may not be an option if you choose to have the prostate removed.

You may wish to read about the potential significance of PNI by following this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476100/

In my lay opinion, it makes no sense to me to remove the prostate if there is evidence that cancer has spread beyond the prostate gland and can only increase the liklihood of adverse side effects associated with surgery. On the other hand, if there is no evidence of PNI from your needle biopsy (and confirmed by a second opinion) then you can have more confidence that PCa is confined to the prostate and surgery may be an option you wish to consider. It seems to be generally thought by most surgeons that young men such as yourself do better with RP than older men although you still run the risk of the many potential side effects. I encourage you to read back through several pages of this discussion forum where several discussion regarding the pros and cons of surgery have been debated in great detail.

As you may know, hormone therapy does not cure cancer but it does curb its growth by interrupting the link between testosterone and the prostate cancer cell. PCa needs testosterone to thrive.

Before your consultations I hope you have the opportunity to read as much about prostate cancer as you can. There are a number of good books out there. When I was diagnosed in March 2010 I think I downloaded and read just about every book available in the Kindle Store at Amazon.com.

With an intermediate cancer diagnosis you have many options to consider and I'm sure your future consultations will lay out the range of possibilities for you. Please be sure to seek a blananced perspective across the field of experts which include radiologists with expertise in ALL of the type of radiation available as well as both open and robotic surgeons. You may also wish to visit a oncologist who specializes in prostate cancer. It almost goes without saying that you want to find a doctor with a lot of experience but this is particularly true in the area of robotic surgery where I have read that the standard learning curve to become truly proficient is about 350 operations. Some on here will tell you that your surgeon should have thousands of procedures behind them. That may well get you a good mechanic but in my case, (and I did not choose surgery) I wanted a medical team that was going to be there for the long term. A physician with thousands of procedures behind them is specializing in surgery and not follow up or long term relationships. If something goes wrong, s/he is going to hand you off to someone else. It all depends on what you're expecting from your doctor.

The frustrating thing about prostate cancer, particularly for the newly diagnosed, is that you are expected to make your own treatment decisions. To me this has always seemed incredible as most men (it was certainly the case with me) with lay backgrounds barely have an understanding of where their prostate is located and what its purpose is. Trying to make a decision about which treatment to choose, understanding the implications of decisions that can never be revisited, and appreciating the potential side effects of treatment without the technical background seems patently absurd to me. But that's the way it is.

It is good that you are involving your wife in your treatment decision. This is a couples disease and she will be affected regardless of what you eventually decide.

Please post more details from your pathology report and best of luck to you as you sort this out.

K

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hello Kongo
Thank you for your reply. I am looking at my report presently. I am a little disappointed at the lack of info in this report. 12 samples were taken. No cancer was found on the right side of the prostate.

The left side (B1) tested for adenocarcinoma (4+3) involving 80% of the specimen (4 of 4 cores contain cancer), Gleason Pattern 4 comprises of 80% of the cancer. Cancer length 5.04 cm.

The left side (B2) tested for adenocarcinoma (4+3) involving 95% of the specimen (2 of 2 cores contain cancer), Gleason Pattern 4 cpmprises 90% of the cancer. Cancer length 2.28 cm.

I agree, the frustrating part of this whole thing is that I was asked what I wanted to do. Luckily, I had a friend that just went through this and he encouraged me to get smart on the alternatives before deciding.

The surgeon I am talking with has over 4000 surgeries, and the onogologist from Moffitt has been doing this for a while also (I was told his history but have forgotten). I have a ton of questions for the poor fellow though :~)

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi Kongo

While I was wading through my decision on which option to pursue I struggled with teh idea of is it better to have a doctor with years of experience and zero bedside manner or follow up. My decision was easy once I met the folks at Moffitt Cancer Center in Tampa Florida. Finally I met a team of medical professionals that understood the urgency I felt on my disease. The nurse and doctor spent significant time with my going over my diagnosis, explaining the treatment plans available, discussed side effects for each, and gave me an idea of the road ahead. Shortly after meeting with these folks, I made a decision that I would go with radiation treatment with the professionals at Moffitt.

Upon returning to the East Coast of Florida (city of Titusville), I returned to work the next day and remembered a question I forgot to ask. I had left the nurse's and doctor's business card at home, so I reached out to a fiend of mine's LPN that worked at Moffitt. Not only did the LPN (remember she was not my nurse) respond to my email question, her reply was quickly followed up by my nurse and my doctor (all in less than 30 minutes). It was at that point that I realized that I wanted to team that was going to be with me the entire journey. Some of the other doctors I was talking with, made me feel like a number. In all fairness to these doctors, I realize they are extremely busy and competent professionals, but I wanted someone to work with me on my endeavor. I guess I know now what is important.

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

Great perspective, Jim. I think the type of attitude exhibited at the medical center you visited in Moffitt is exactly what every man diagnosed with prostate cancer should have. I like the way you couch your relationship with them as more of a partnership in a joint venture to address your disease in a way that is best for you.

K

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi Kongo

While I was wading through my decision on which option to pursue I struggled with teh idea of is it better to have a doctor with years of experience and zero bedside manner or follow up. My decision was easy once I met the folks at Moffitt Cancer Center in Tampa Florida. Finally I met a team of medical professionals that understood the urgency I felt on my disease. The nurse and doctor spent significant time with my going over my diagnosis, explaining the treatment plans available, discussed side effects for each, and gave me an idea of the road ahead. Shortly after meeting with these folks, I made a decision that I would go with radiation treatment with the professionals at Moffitt.

Upon returning to the East Coast of Florida (city of Titusville), I returned to work the next day and remembered a question I forgot to ask. I had left the nurse's and doctor's business card at home, so I reached out to a fiend of mine's LPN that worked at Moffitt. Not only did the LPN (remember she was not my nurse) respond to my email question, her reply was quickly followed up by my nurse and my doctor (all in less than 30 minutes). It was at that point that I realized that I wanted to team that was going to be with me the entire journey. Some of the other doctors I was talking with, made me feel like a number. In all fairness to these doctors, I realize they are extremely busy and competent professionals, but I wanted someone to work with me on my endeavor. I guess I know now what is important.

Swingshiftworker
Posts: 687
Joined: Mar 2010

I am strongly opposed to the use of surgery to treat PCa for men of any age unless absolutely necessary-- but particularly "young" men under 60 -- because of the substantial risks of surgery and the availability of less detrimental alternatives.

The standard pitch to young men w/early stage PCa is that you are young enough to cope w/ and recover from the trauma of surgery but, as Vasco points out, if the surgery does not go well (as is often the case), you could face a lifetime of problems caused by the surgery -- most notably ED and incontinence.

As an example, in another thread just posted on this forum, Old-Timer (his aka) reports that he's 85 and a 20 yr surgical PCa survivor w/a currently undetectable PSA but he's now considering the implantation of an AUS (artificial urinary sphincter) because, as he says:

"I wet my pants a lot–I mean oodles and oodles. It’s not painful. At times it is embarrassing. It is uncomfortable but not intolerably so. To sum it up, it doesn’t hurt, but it’s a dog-gone nuisance. I buy Guards and Depends at a big box store!" See: http://csn.cancer.org/node/229544

This is 20 years of wearing Depends and peeing uncontrollably!!!! And this doesn't even takeinto account the possibility of ED over that same period of time which many men also experience, which is especially traumatic for young men. In this regard, take a look at this thread where alevine1nc (his aka), who is 43, laments about his ED and lack of support from his physician 4 months following surgery: http://csn.cancer.org/node/229121

There are some very effective alternatives available for the treatment of early stage PCa. Unfortunately, you are probably not eligible for CyberKnife or Proton Beam Therapy (which are IMHO currently the best choices because of their high degree of control and accuracy in radiation delivery) because of your high PSA scores.

There is greater risk of ED and incontinence w/Brachytherapy but not as great as with surgery. If you are considering BT, I suggest you look into HDR (high dose rate) BT (which only temporarily places radioactive seeds in your postate) instead of LDR (low dose rate) BT (which places the seeds in your prostate permanently. With BT, the critical issue is the accuracy of the placement of the seeds and the appropriateness of the radiation strength of the seeds themselves. Seeds placed in the wrong location or seeds that are placed correctly but of the wrong strength can cause tissue damage leading to serious side effects including ED and incontinence. And, as with all other radiation treatments, the skill and experience of the radiologist is critical in this regard.

If not BT, you still have IMRT which has made significant advances in controlling the focus and placement of the radiation beam with limited side effect risk. This in conjunction w/hormone therapy (HT) seems to be the standard approach to treating more advanced PCa. Not sure you even need BT if you have an effective treatment plan incorporating IMRT w/HT.

As Vasco has already suggested, take the time to gather as much information and get as many opinions as you can before making a final treatment decision. If you haven't already, you should also get a 2nd opinion on your biopsy - Dr. Epstein at Johns Hopkins did mine and is considered one of the leading pathologists in analyzing PCa.

Good luck!!!

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi SwingShiftWorker
Thanks for sharing with me. I have read several of your postings under other threads. I had also read Old Timer's posting also. I waiver back and forth on whether surgery is the right option, or if radiation is. The good thing is that I am very inquisitive, so I will naturally seek out all sorts of info prior to making a decision. I am a firm believer in lessons learned, which is why I signed up for this web site. I am glad so many folks are willing to share their stories with me. I have 5 brothers, all are very uncomfortable with this topic (all younger than me). I found it interesting that most of the support I had originally recieved was from women (all ages) and men older than me. I learned early in my life to not hold things in, so it has been great to have so many folks to talk with. In fact, I have spent hours on the phone talking with men dx with PC, that I have never met. Each has shared their stories with me, and the good and bad of each approach.

I really appreciate your time and thoughts. Thank you

mrspjd
Posts: 694
Joined: Apr 2010

Jim,

Welcome to the forum. Re your recent post and question in another thread (http://csn.cancer.org/node/191395#comment-1148458) “I am not familiar with some of the "lingo", what is a PCa, and what is AHIGBL?” The latter relates to the advice (IMO, unprofessional advice) that “All Hell is Gonna Break Loose” (AHIGBL) given to another poster named “rede2fite” by his doctor after he was handed a dx (diagnosis) of PCa. Often it can be helpful to read the preceding/previous posts in the thread, i.e. the topic of discussion and the posts on that “thread.”

The reference to “PCa” (Prostate Cancer) specialists means that it is always advised to consult with many different experienced and skilled PCa medical doctors in order to obtain multiple opinions about a variety of tx (treatment) modalities such as radiation oncologists to learn about all the various forms of RT (radiation tx), urologic surgeons (open and robotic RP), and especially, a knowledgeable & respected PCa oncologist, who may be able to provide an independent assessment of your case, albeit, with info about ADT/HT txs (androgen deprivation/Hormone therapy).

I’m not one of the “guys” posting on this PCa forum. I’m a gal and the wife of a stage 3 PCa survivor dx’d with intermediate/high risk, locally advanced, high volume PCa. I’ve been a part of my husband’s PCa journey since his dx in Feb 2010. We’ve been married for 39 yrs, together for 41yrs. During that time, we’ve always felt two heads are better than one when tackling major problems/issues and evaluating solutions. PCa is no different, being one of those “issues.” So our approach was the same. We began this PCa journey, our journey, together as a couple and as team. It continues that way today.

In the other thread you asked: “Anyone have a recommendation on the "Triple Prong Approach" (seeds, external radiation and hormone therapy).” Following 3 months of intense research, multiple doctor consults, add’l diagnostic tests to accurately clinically stage his PCa (before evaluating tx options), my husband, PJD, elected a combination of 3 neo-adjuvant txs including ADT3 (triple blockade androgen deprivation therapy), HDRB (high dose rate brachy aka temporary brachy involving NO permanent seed placement), and IMRT. Our PCa story/journey can be found here http://csn.cancer.org/node/217480#comment-1117294 (copy and paste the link into your browser). Questions are always encouraged on this forum. Ask, and many here will try to provide helpful answers/opinions.

All the best to both you and your wife. Good luck on your journey together.

mrs pjd

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thank you kindly for your words of encouragement and helping me out with the lingo. It is greatly appreciated. My biggest obstacle presently is remaining patient, but I have help in that area :~)

VascodaGama's picture
VascodaGama
Posts: 1711
Joined: Nov 2010

Jim

In my eleven years of PCa researches and attended conferences, I got to the understanding that no case is equal but similar. Nevertheless, I have noticed the following which may be helpful to you. Add those to your List of Questions:

1) Negative DRE is common in young patients.
2) Micro-metastasis is usually diagnosed in voluminous cancer produced by low Gleason grades.
3) High levels of PSA could be associated with BPH and cancer. This could be confirmed through the size of your prostate gland and from the findings in the cores. The pathologist would report on the presence of inflammation.
4) Neuritis and/or Peripheral neuropathy are typical conditions reported by many PCa diagnosed patients. This is related to inflammation or having an origin in an infection of the peripheral nervous system. The symptoms you describe “sudden and urgent urination” and “have to pass gas prior to urinating” and “pressure in my groin area” are typical of these conditions. Urologists usually recommend a dose of antibiotics before doing a biopsy.

Have you received a Clinical Stage?
Probably a review of the biopsy could give you peace of mind.

Micro mets are difficult to be detected with present image studies. ProstaScint is not very reliable and PET scan has given several false positives in the pelvic area, (agents attach to the fatty tissue surrounding the lymph nodes) and many doctors do not trust its results even with the newer contrast agents (choline, fluorine, fluorodeoxyglucose, etc.) because they lack sensitivity and are difficult to be administered (too short half-life). However, many patients like to have this tests performed and there have been positive results.

I was diagnosed with the micro mets after surgery at 50 years old. The diagnosis pre surgery was Gleason score 2+3=5, voluminous cancer (6 out of 6 positive), clinical stage B (T2) and negative DRE. All image studies were negative.

Wishing you find a solution to your case.
VGama

hunter49
Posts: 204
Joined: Oct 2011

did your disease re-occur? If so how long after your treatment or surgery? The micro-metastasis is the worst part of this disease. Not knowing if it is all out. I have the concer in only one of the 12 sections they biopsied. They took three cores there all posative with 90% and PNI Gleason 3+4 PSA 5.4. The other 11 sectons they did 12 cores and no cancer. The most concerning part is every doctor including Partins at Hopkins say surgery and there is most likely no spread. I am concernec about PNI and not one doctor thinks PNI is a problem at my stage since DRE is negative and they say I am a T1c. They felt PNI is only a real indicator in later stage and higher PSA. Thoughts?

TitusvilleBills
Posts: 23
Joined: Nov 2011

I will be asking my doctor what stage I am at. It was not included in my biopsy report nor was the PNI. I know that my prostate is swollen 3 times normal size, but the DRE did not indicate any problems. The last DRE I had (after my biopsy), the doctor stated he felt swelling, but I attribute that to the biopsy only being 2 weeks previous.

Two quotes I like:

Always laugh when you can. It is cheap medicine.
Lord Byron (1788-1824) English Poet

"We're not here to lose our sense of humor. The more often I laugh today, the lighter my spirit will feel and, the healthier my emotional life will become." Richie Berlin

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

Jim,

You may wish to look at: http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-staging for a definition of the various stages of prostate cancer.

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thanks Kongo for the reference. I have read about the staging in my book, but thought a Dr would let me know what it is.

I will give it a shot and see what ya"ll think.

Based on the data I have available, looks like I am a Stage IIB. Agreed?

T1c: The cancer is found by needle biopsy that was done because of an increased PSA (DRE did not detect)
N0: The cancer has not spread to any lymph nodes. (CAT Scan showed no tumors outside the prostate)
M0: The cancer has not spread beyond the regional lymph nodes. (CAT Scan showed no tumors outside the prostate)
PSA - 91 & 110 (of course I was not told not to have sex 2-3 days prior, but I dont imagine that would elevate the PSA that much would it). First PSA was the evening prior, second was the morning of)

T1 or T2, N0, M0, any Gleason score, PSA of 20 or more: The cancer has not yet begun to spread outside the prostate. It may (or may not) be felt by digital rectal exam or seen on transrectal ultrasound [T1 or T2] The cancer has not spread to nearby lymph nodes [N0] or elsewhere in the body [M0]. The tumor can have any Gleason score. The PSA level is at least 20.

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

I would defer to the doctor, of course, but my understanding is that Stage II is indicated by something detected with the DRE and you wrote that was not the case in your situation.

TitusvilleBills
Posts: 23
Joined: Nov 2011

That is what I thought also, but given my extremely high PSA (above 20), it seems by the scale I might default into a Stage II. I will ask him tomorrow and see what he says. Thanks for the help.

hunter49
Posts: 204
Joined: Oct 2011

Vasco does voluminous cancer refer to the amount of posative cores or % found in any one core?

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

Jim,
Welcome to our forum and of course sorry to read about your diagnosis.
It is encouraging to read that you are seeking education on your choices.
I have read good things about Dr. Pattel and personally know a nurse that works on the post surgical wing where the prostate cancer patients recover following surgery. All of the nurses speak highly of Dr. Patel.

One word of caution that I will give is not to make your decision based on 'horror stories' that some will tell you. Make sure and compare apples to apples. Surgical procedures from 20 years ago are fastly different then the Davinci Robotic procedure done today.

Radiation techniques have also improved with the finess of delivering the currect doze to the appropriate areas needed.

As my wife cautioned me when I started this journey about 2.5 years ago....Support boards are for support. Those with complications and issues tend to post since they need the support and those with great success tend to move on.

Lewvino age 57
Davinci Aug 2009
Gleason 4+3 (7)
Current 2 year psa 0

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi Lewvino
Excellent point and well taken. By trade I am a Project Manager so seeking out "Lessons Learned" is very natural part of my life. I gather the data, group it so I am comparing apples to apples, evaluate what I have learned and see what questions I need to ask the experts. The choice I make, is the one I will live with the rest of my life, may it be long and eventful :)

Old-timer's picture
Old-timer
Posts: 152
Joined: Apr 2011

Swingshiftworker quoted from my posting of a couple of days ago. I wish to add a point or two to more completely describe and clarify my situation. My incontinence is caused by scar tissue which was probably caused by the radiation rather than surgery. I had surgery in 1991, followed by 13 cancer-free years. Incontinence was not an important factor during those years. I was 99 percent dry. The incontinence gradually became a problem during or soon after I underwent external beam radiation in 2005. It seems to have grown more intense each year since that time. The scar tissue was not discovered until I had a urodynamics exam a few months ago. I recognize that increasing age may be a factor in causing ncontinence. I appreciate the added years. Overall, the past 20 years have been very good ones.

One other point concerning my incontinence. It is not as bad as I pictured it in the paragraph that Swingshiftworker quoted. My fault. I was trying to be poetic! Sorry if my exaggeration is misleading.

I do not recommend prostate cancer treatments, especially for young folks like you. I have no qualifications to do so. There are many more options now than there were back in 1991. I wish you success in selecting the correct answer for you.

One other item that may interest your brothers. I have four brothers and about 60 first cousins. To my knowledge, only one (a first cousin) has prostate cancer. That cousin, who is now 84, had surgery nineteen years ago and continues to be OK. Neither of my grandfathers nor my father had prostate cancer. Your brothers should be fine.

I will follow this thread to see what you decide and how it works out for you. Best of luck.

Jerry (AKA Old-timer)

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thanks Jerry!! I look forward to the day I am the "old-Timer" on this discussion board. I will share that info with my brothers. Thus far three have been tested and their PSAs are very low. I need to work on the other two, so maybe this success story will encourage them to work beyond their "fear of knowing the truth."

Swingshiftworker
Posts: 687
Joined: Mar 2010

If I had known the actual source and extent of your incontinence, I would have used another reference rather than your quote. However, this doesn't change the fact that many men still experience both ED and incontinence following surgery.

Obviously, there are risks of ED and incontinence w/EBRT, as well, but there have been significant improvements in the use of IMRT and other focused beam radiation treatments even in the 6 years since you were treated. Nonetheless, I'm sorry that you have had to suffer incontinence for so long since you received radiation treatment.

That said, just in case TitusvilleBills (and others) is (are) not aware of the full scope of the risks of surgery, I'll re-post a link to the following article, which I think explains those risks the best: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

Ciao!!

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thanks SWingShiftWorker
Appreciate the information. I will gladly read this article.

paul2858
Posts: 1
Joined: Nov 2011

Hi Bill

I'm a new member to the club no one wants to join and have read all the comments above with great interest. I am 53 and was diagnosed 3/11 with a PSA of 3.6 normal DRE bioposy gleason 3+3=6 and spent several months reviewing my options. In the end I opted to get the cancer our and still have more bullets to fire later if there is a reoccurance. I live in Florida and had Robotic with Dr Patel on 11/13 and the cath removed on 11/19, back to work on the 20th, I'm a CPA so I sit with no heavy lifting. I'm a little over three weeks out and am 70-80% dry (lifting and waiting too long :)to hit the head cause a liitle leak) and taking viagra 3 days a week to awaken the snake. I'm optimisitc of a full recovery as I'm getting night time erections and have the Dr's go ahead to test the system next week. Clearly everyone has to choise their own treatment and I have friends the have gone different route, up till the last minute I was considering Protron treatment in Jacksonville, but then decided to get it out. Best of luck to you and your family as you work through the treatment options.

TitusvilleBills
Posts: 23
Joined: Nov 2011

I visited the folks at Moffit and was very impressed with the facility, doctors and nurses. I had a PSA test performed and once again it jumped up to 118 ng\mL. I wasnt too happy about that but the nurses and doctors assured me that there were possible explanations for the increase. I have had 3 doctors all agree that there is good reason to suspect that the cancer has spread external to my prostate. So if I chose surgery, I would most likely require some form of radiation treatment afterwards. I was seriously leaning towards surgery, but have elected to go with hormone therapy (got my first shot of Lupron on the 3rd, no side effects yet, I am taking Advart and some other pill to deal with the enlargement of my prostate). I will start radiation treatment in December for 5 weeks and follow up with seed implants.

It didnt make any sense to schedule surgery 30+ days from now, have surgery, wait to heal up, do follow ups to see what my PSA was, and most likely have some form of radiation performed anyhow. My wife and I spent Friday second guessing ourselves, but decided this is the best path for me. We are focusing on the positives, and remaining in postive spirits.

I really appreciate everyone's support and sharing of their experiences. I will continue to stay involved with the postings here as it does help me stay positive. Some of the literature I read is depressing so it is encouraging to hear the postive stories from you all.
Thanks
Take care, and continue to share
Jim

Swingshiftworker
Posts: 687
Joined: Mar 2010

Good call, Titus!!

Too many men rush to surgery even though it will not do any good (and in fact put them at greater risk of complications) to undergo surgery to cut the prostate out. Your combined HT and IMRT and BT approach gives you an excellent chance of recovery without the risks of surgery.

I'm sure you've already read up about the risks associated w/HT, IMRT and BT and hopefully the any problems you experience will be will be minimal.

Good luck and keep us up to date on your process.

TitusvilleBills
Posts: 23
Joined: Nov 2011

I will SwingShiftWorker (SSW). I read the article you sent me and it was of great help, thank you.

robert1
Posts: 82
Joined: Apr 2011

Hello Titus:

Maybe this link will help you.

https://leisurelabs.egnyte.com/h-s/20111108/d9c660cb7b9a4b14

Best wishes,

robert1

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thank you Sir

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