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PCa_at_42
Posts: 5
Joined: Mar 2012

Hi all. I was recently diagnosed with prostate cancer, at 42 years old. The news has been somewhat of a shock, though I'm guessing everyone reading this note has gone through that. I think my first reaction was similar to many others: I want to be able to see my kids grow up.

I had a PSA of 6.2 last September. Two follow up tests showed a PSA at 2.x and 3.x. For reasons that are not important (work, etc.) I delayed the meeting with the Urologist for a few months. The DRE indicated a possible problem so I went back for a biopsy. Normally, my Urologist prefers to have in person meetings to deliver the news, but I was scheduled to leave for a 1 week business trip on the day the results came back, so he gave me the summary version over the phone: 1 of the 12 samples was positive for prostate cancer. I guess it could have been a lot worse. I meet with him next week to get the more detailed report and discuss treatment options. The week has allowed me (and my wife) to research the issues (we both know a lot more about the male anatomy than we ever thought we would). While we will keep an open mind, I believe surgery is the best course of action for me. The peace of mind, knowing that the cancer has been removed, is extremely important to me. Given that the first high PSA test was 6 months ago, I'm hoping to schedule it as soon as possible. I guess the point of this note is two fold. First, thank you all for the information you have shared on this forum and others. The amount of available information has helped me understand the disease, treatment options and what to expect. Second, to ask for your help and collective wisdom with a few questions:

There is very little public information about urologists/surgeons. Other than asking them about their experience, success rate with removing the prostate and sparing the nerves, etc., is there any independent way to research this information? I don't expect my urologist to lie to me (I have a lot of respect for him, and the limited information I've found is very positive), I'd just like to have the ability to research him and all other available specialists.

Is it common to have a bone scan, ultrasound, MRI or CT prior to surgery? I'm not sure what my urologist will recommend, but right now my biggest fear is that it has spread. It may sound a little crazy, but I think I'd feel better going into surgery believing that it hasn't spread instead of not knowing.

As i look ahead to recovery I know I will need to deal with a host of issues, emotional and physical. My job requires me to make difficult judgement calls on a regular basis. I'm struggling to do that now and imagine it will be even more difficult in the weeks following the surgery. Is it completely unrealistic for me to plan on being out of the office for 8-10 weeks, or more? Short term disability insurance will cover 75% of my salary for 90 days. Is it absurd for me to want to use all of that time to recover? I'm an emotional wreck right now and don't see that changing for a while (maybe the first PSA test post surgery--when is that?).

Any help is greatly appreciated.

Thank you.

VascodaGama's picture
VascodaGama
Posts: 1554
Joined: Nov 2010

AT42

I would like to welcome you but you shouldn’t be here at such young age.
I am glad to know that you have been doing some researches and want to continue before any commitment. That is the best you can do at this time of your case.

Firstly let me inform you that in prostate cancer, a proper diagnosis will lead to better decisions and therefore to better treatments and outcomes.
Second opinions on anything are a must do thing and you should start by sending your biopsy samples to be rechecked at a reliable laboratory such as at Johns Hopkins or Bostwick Laboratories. You should include a copy of the pathologist report you will get from your doctor.

You will also need to get other tests which will ascertain the aggressivity of the cancer and its spread, if any. This includes tests from blood work (infections or inflammations, etc) as well as image studies, all done at outstanding clinics and by proper physicians. The image studies should be done with the latest MRI 3-tesla capabilities or higher. Traditional CT or MRI are not reliable to detect cancer when the PSA is low (lesser than 10).

It is common to read or listen about biased opinions particularly from physicians that will try to convince patients to choose their line of speciality (some for business purposes). Urologists will imply surgery; radiologists will imply radiation and oncologists hormonal treatments. The best answers are usually obtained from independent medical oncologists specialized in prostate cancer.
Getting several opinions may create confusion but one is better informed and will be assured of what to expect as an outcome.

NCCN guidelines recommend radical treatments to young patients. However, there are many aspects to be considered because one does not want to be cured but become handicapped at such young age. Quality of life should be of concern too.

There are many books on the subject and loads of information in the net. You should prepare a list of questions so that you can present them to the doctors you will be consulting. Here are ideas that may help you in preparing your case;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

Here are some books that will help you to understand about diagnosis, surgery and radiotherapy;
“A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007);
You can order newer or used copies from Amazon site.

At this link you have a complete compendium regarding Prostate Health and Cancer;
http://www.lef.org/protocols/prtcl-138.shtml

All treatments have risks and side effects that will affect your life style. You should be aware of them before committing to any type of treatment.
In any case, outcomes are usually better if one gets treated by specialized care givers at modern facilities.
You can inquire on the CVs of the team caring your case by contacting the hospital/institution where he works. You shouldn’t accept a physician or centre of care that would not give you the information on their practice and its results.

I hope you get good answers to your quest.

Be confident. You will knock down the bandit and live many many years to see your kids growing.

VGama

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Welcome to our forum even though we are sorry you have to be here with us.
Vasco has allready provided you with a wealth of information.
Continue to Educate yourself and ask the questions to us that have been down the road ahead of you and to your doctors.

You will find that there are many options to you to fight this cancer. Only you can weed through the information and come to a decision. Many will be biased based on their experience or experiences of others. But each treatment option has the same goal 'get rid of the cancer'.

The side effects may or may not impact you and you have to decide if you can live with that possibility.

As you know the Good news is indeed you only had 1 core with cancer found and a Gleason 6. You would even be a candidate for 'watchful waiting' and see what happens in say 3 - 6 months time.

I was 54 when I got the news with a Gleason 7 and 5 of 12 cores positive with cancer found. After my research I decided that the Davinci Robotic procedure was the best option for me. I'm doing great at 30 months post surgery.

With surgery you have traditional or Davinci Robot. Research the pros and cons of each type of surgery.

You can shop around for a skilled davinci surgeon. I travelled 2 1/2 hours one way for the skill set of my surgeon. Davinci has a very high learning curve so if you did choose this method look for someone that has done 500+.

Other options that you might want to research are Cyberknife. Though I know you expressed concern of wanting the 'cancer' out. Many on our forum have had excellent results with cyberknife procedure.

I took 8 weeks off work following my surgery. Did I need that much time? Probably not but it was offered on a short term disability so I took it. My Profile Picture was actually taken that 8th week in Bermuda after a cruise for my youngest son's wedding. I was very relaxed and in good spirits when I returned to work.

This can play havoc with your emotions and if you feel the need to talk many of us have talked to others in the past. Just shoot a private email to any of us using the email portion of this forum.

My father was a Gleason 6 patient and treated with Proton back around 1996. He is doing great and as Vasco has stated..I also believe you will be around to see your kids grow up!

Lewvino (larry)

hopeful and opt...
Posts: 1317
Joined: Apr 2009

when initially diagnosed, go through shock and all the associated negative feeling. Some things that help are, if you attend religous services, make sure that the clergyman is upbeat and positive, otherwise change.

Have a positive attitude in general, focus on positive experiences and people and avoid the non positives. Enjoy the moments.

It's my experience that the shock lasts about two or three months.

One thing that I do is research I find that the more I know the better I feel.

From the limited amount that you posted your cancer may of the garden variety type,( please let us know what the involvement is of the core that is posiive and what the DRE showed), that is you were lucky enough to be diagnosed early so you will do fine with any treatment that you choose. The doctors in all the specialties will want you, because of your low numbers.

Statisics show that you will live longer than men who have not been diagnosed, since you will be more aware, and you will be more likely to change your life style and eating habits to the better as many of us have. Heart healthy is where is it at.

As Vasco recommended, it is very very very important to get a second opinion on the biopsy so you are not under or over treated.

Also as he recommended an MRI tesla 3.0(hopefully with a specroscopy) usually found a major teaching hospital is in order to make surethat there is no extracapular extension, and define the cancer, one LOBE or two, size, etc.

Attend local support group, keep active developing information...you are in no rush to make a quick decision.....but you need to keep very focused on this.

Let us know where you live, you can be specfic about the doctors that you see and the hospital, many of us have been around, and can give you feed back, and direction.

Swingshiftworker
Posts: 634
Joined: Mar 2010

From the way you couch your questions, it seems like you're just considering surgery. Is ths correct? If so, you need to reconsider.

You have a low grade early stage cancer which is amenable to treatment w/radiation with an equal likelihood of success and with much less risk of ED, incontinence and other side effects. Your cancer is also early enough that you really don't need to worry about cancer migration, nor should you need an MRT, CAT, bone scane or ultrasound in order to determine if the cancer has spread yet.

I'm a pretty outspoken opponent of using surgery to treat prostate cancer and, if you want the straight dope on the risks of surgery (not just what your urologist/surgeon tells you), then read this article, which was written by a doctor.

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

Don't be surprised if the information provided differs dramatically from what your urologist/surgeon has told you. He's not necessarily "lying" to you but each specialist pushes his specialty and is naturally inclined (biased?) to minimize the risks and accentuate the benefits of the methods s/he uses.

With surgery, it's always crap shoot. Lots of guys here have reported no problems and only limited disability caused by ED and incontinence. On the other hand, there are lots of other guys who have told us some real horror stories of long term and incurable ED and incontinence which required the use of penile implants and artificial urinary sphincters, which sometimes caused even more problems.

BTW, there was a recent thread which reported and commented on the experience of a doctor who chose surgery for his prostate cancer but "if he had to do it over again" would have gone w/active surveillance instead -- which is obviously a choice available to you too. See: http://csn.cancer.org/node/236334. Here's what the doctor/patient had to say in conclusion:

"Where am I now on the PSA dilemma in light of the recent US Preventive Services Task Force recommendations? It is clear that prostatectomy results in a very high chance of 20-year prostate cancer–specific survival, but even when the procedure is performed by an expert urologist, it can also result in significant rates of sexual, bladder, and bowel dysfunction and other less common adverse effects, such as my weakness. Active surveillance with longitudinal PSA tests and physical examination is associated with very low rates of bowel, bladder, and sexual dysfunction and has a high probability of correctly identifying when to move from surveillance to treatment.

If I could do it all over again, I would not undergo the surgery; instead, I would opt for active surveillance. Even the most informed patient (me in this case) has difficulty making a truly informed decision."

If you aren't comfortable w/the idea of "doing nothing", the obvious other choice is radiation and, if you choose radiation, there should be no need to be out of work for 8-10 weeks as you would for surgery.

The best of the currently available methods of radiation treatment for early stage cancer patients is CyberKnife. It offers the most advanced and precise method of radiation delivery which accounts for both organ and body movement during treatment with minimal side effects. Treatment only takes 4-5 days outpatient treatment and no need to lose time from work. I and a number of members here have received this treatment with good results. Low Dose Rate Brachytherapy is often recommended for men w/early stage PCa, but I'm not a big fan of it because of the imprecision involved in the use of seeds. If you go w/BT, the better method is High Dose Rate BT which involved the temporary placement of strings of seeds that are removed after treatment. I believe that down time for HDR BT is just a couple of days in the hospital and maybe a total week of recovery time. Proton Beam Therapy is also a good method of treatment but it requires 28-40 daily treatments and you have to live or move near to a treatment center. So, that might not work for you.

In any event, I suggest you check out all of these alternate methods of treatment and compare them with the risks/benefits of surgery and, if you do, I think you'll conclude (as other here already have) that surgery is NOT necessarily the best way to proceed.

Good luck!

jbw901
Posts: 23
Joined: Feb 2012

I am 6 weeks post robotic prostatectomy, after being diagnosed in July with early stage low-grade PCa (mid-50s, PSA 5.3, 1 core positive <5%, Gleason 3+3). Wrestled with active survelliance, but research and consults led me to the decision to proceed with surgical treatment.

Not an easy decision, but am glad to be moving proceeding thru the stages of recovery (1st post-op PSA test is this coming week).

Advice to those considering the decision of surgery
-Do research (Walsh, Scardino, McHugh books)
-Gain insight of individuals through a Protate Cancer Support Group
-Interview surgeons, finding someone you are confident in, who specializes in this procedure, and has a reputation as being "one of the best"

Although each procedure is unique, if one has a skilled surgeon, it is possible to be fortunate to have a quick recovery with minimal side effects. In my case, I was able to return to the office part time after 3 weeks, and full time after 4 weeks.

hunter49
Posts: 204
Joined: Oct 2011

Welcome to our exclusive club that nobody wants to join. That said you will get a a lot of support here from some really extrodinary men and women. Yes, women are here too as they go through the disease with you. Your wife will become your rock. I am 49 and was diagnosed in September last year. I had a psa jump from 2.54 in 2008 to 4.1 in August 2011. I had one core of 15 posative. I had surgery November 10 2011 and I returned to work part time the following week. I should have taken a good 2 weeks off but I was going stir crazy. I opted for surgery because given my age and all my consultations I was advised the best cure was offered that way. I never needed pain meds and was 99% dry once catheter was removed . ED is an uissue but gets better. I say it is like my kids and has a mind of it's own listend only when it feels like it. However, that is standard to have some as the nerves go into shock when disturbed even during nerve sparing. I know it works just needs to become consistant. A little drip at late day from stress incontinence but that stopped in January. What is your Gleason score ? It appears your PSA doubled and trippled by your 2x and 3x notion. The good news this cancer is the turtle, it grows very slow. You need to get other opinions on your slides. Where are you located? Also please give more details as to your psa over time and any other information on your pathology report. I had similar thoughts about seeing my kids grow up and from time to time I still do. My first PSA post surgery was undetectable and my next test is Friday. Yes I am getting anxiety but that is natural. You will hear many opinions on surgery and radiation. Remember no 2 cancers are alike and you need to make the decision you can live with. I am happy with mine since I know the source is removed and I have a clear way of determining if it comes back. You should read surviving prostate cancer by Patrick Walsh. Anything I can do or answer just ask I check the site at least once a day. Good luck and Gods speed.

Old-timer's picture
Old-timer
Posts: 110
Joined: Apr 2011

Twenty years ago, at the then age of 65, I faced what you are up against today. I chose surgery over radiation and watchful waiting. With limited knowledge about treatment options and after very little research, I chose surgery because I wanted to get the cancer out of my body. The cancer came back after 13 years. Subsequently, I under went radiation, and then went on hormone therapy. My cancer, though still with me, has been in remission for nearly four years. I am satisfied with the decisions my urologists and I have made. Of course I have coped with side effects but I have experienced very little discomfort or pain. I have lived, and continue to enjoy, a good life.

Entering this journey at the age of 42 will be very different than what I have experienced. I had already retired, so I did not need to be concerned with earning a living. My children had grown up and their children were on the road to growing up. Also, Medicare was there for me.

My advice to you: study your options thoroughly, get good medical advice, and then go in the direction in which you feel most comfortable.

I wish you and your family the best of luck.

Jerry

PCa_at_42
Posts: 5
Joined: Mar 2012

Thank you all for the information and support. Sorry for any confusion with the 2.x and 3.x regarding the follow up PSA scores. The scores were 2.something and 3.something, i just couldn't remember what the decimal places were. Also, I am in the Boston area and being treated at Beth Israel Deaconess.

I have since had the detailed follow up with my Urologist and read Dr. Walsh's Guide to Surviving Prostate Cancer (in addition to a number of other publications). I found Dr. Walsh's book to be the best source of information.

In the detailed follow up meeting with my Urologist, I learned the important details. My Gleason score is 6, the one positive biopsy showed 20% cancer (higher than I had hoped, but not high enough to send me into shock) and my stage is T2a. The chance that the cancer has spread rounds to zero so there is really no need for a bone scan, ultrasound, MRI or CT prior to treatment (and the risk of a false positive make the tests a bad idea). I will likely opt for surgery given my age and the stage of the cancer, most likely open rather than robotic. I feel better knowing that the surgeon will have me open and will have the ability to look at and feel everything before closing me back up. He also noted, based on his experience and how the gland felt on the DRE, that it would not surprise him if the Gleason score went up to a 7 when the prostate is evaluated post surgery.

I will be getting second opinions in the coming weeks, of both the pathology report as well as the course of treatment. I do plan to meet with a radiologist, another surgeon and a medical oncologist to get all of their views, however, unless I hear something radically different than what I have learned so far, I will likely be scheduling surgery sometime in the next 6 weeks. My surgeon did suggest that ED rates are higher than generally reported--regardless of the surgeon or method I chose--but that with injections and/or drugs, a very high percentage of men are able to have an active sex life.

I'm looking forward to being able to give you all a positive report after treatment. Of course, I'm sure I'll be looking for all of your guidance and encouragement many times between now and then.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

it is the law, simply ask them to send to you....this is important to have as you see various docs, and ask questions of others, such as this site....be prepared.

This surgeon,

How did you come to him?

How many surgeries has he done?

Does he keep records of his outcomes

What are his outcomes

Remember you get only one chance at surgery and you want the best, there are no do overs.

I strongly suggest that you have an MRI with a spectroscopy to see if there is extracapular extension, or at the least a tesla 3.0 MRI.

VascodaGama's picture
VascodaGama
Posts: 1554
Joined: Nov 2010

AT42

Guys in this forum are eager to offer their layman’s opinions to the folks in this “boat” and you surely can expect the best from them. You will get the support you are looking for now and a long your “travel”. Later you may share your experiences with other newbies.

I agree with Hopeful regarding the MRI 3-tesla, particularly because your comments on the (positive ?) DRE.
You wrote;
“MRI,….. risk of a false positive…“, and
“…how the gland felt on the DRE, that it would not surprise him if the Gleason score went up to a 7…”

I do not know from where or whom or in what basis you got the above information, but those are RINGING ALARMS and you should be cautious.

NCCN guide lines (http://www.nccn.org/professionals/physician_gls/f_guidelines.asp) specifically express the need in proper diagnosis recommending the whole “collection” of tests, including image studies. These guide lines are followed by world physicians including your medical team.
They inform that traditional CT scans and MRI are useless to detect PCa in cases of low PSA (lower than 10 ng/ml), however, higher resolution equipments manage to get better pictures, including a good view of the membrane/walls of the prostate. A colour Doppler ultrasound done by experts can reveal any suspicious blood vessel activity close to the prostate capsule, indicating high probabilities of extra capsular extensions.
Professionalism of the radiologist reading the films are very important to rule out the “false positives” and these tests will serve you as base lines along your future preparedness.

I am surprised why did your urologist comment on positive DRE (felt something) but he is not eager to trace the spots. Not to discredit his views, I should tell you that another physician would most probably rule out surgery if extra capsular extensions are apparent. In these cases, adjuvant radiation would be recommended to prevent any spread and recurrence.
Nevertheless, many surgeons disregard the aspect on patient’s Quality of Life and proceed independently of the side effects, conducting the case with a series of treatments (one after another) trying to catch the bandit along the way. This may translate your urologist’s opinion “…that ED rates are higher than generally reported….”, but he forgot to tell you about the risks (incontinence, etc) that build up on the top of each additional treatment.

ED from treatments is a true fact but the scale of the damage is wider if the treatment is done by less experienced experts.
You may see it differently, but I would send out the biopsy slides and path report to a good laboratory to get a second opinion on the slides and on the treatment.

I am glad to see you so involved in the researches and that you got already an idea of one “direction”. You are becoming an educated patient and that will guide you to better decisions.

Wishing you the best of the lucks.

VGama

hopeful and opt...
Posts: 1317
Joined: Apr 2009

You are receiving excellent advise from vgama. When I posted I hesitated to make more comments since many of these had already been mentioned in this thread.

To be honest, for some reason I think of phrenology, when the surgeon says that the gleason can be upgraded by his feel of the bump, but tells you that there is a zero chance of the cancer having extracapular extension and you don't need any diagnositic tests.

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Thanks for providing back your recent stats and discussion about your visit with the Doctor.

Wishing you the best as you continue on this journey.

Lewvino

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