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PC in my 40s - What treatment to choose?

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Posted 1/31/2010 1:16 AM (GMT 0)

Hi - This is my first post as I was just diagnosed last week with PC (psa 3.7, T2a, Gleason 3+3 in 1 of 12 cores).

I've been compiling info like a madman, naturally, but because I'm only 43, I'm having trouble finding many guys my age who were faced with treatment decisions. My urologist wants to take it out to "be sure" but logic tells me to go with seeds and, if levels don't go down, then I can always have the prostatecomy later.

Obviously, I want to minimize SEs and it just seems to me that you should try BT or a different radiation therapy before prostatectomy that has such a greater risk of the many debilitating side effects.

Is this a foolish approach? Am I ducking even greater danger by avoiding total removal?

I'd love all opinions and especially if anyone faced this dilemma in the early 40s. Thanks.

Posted 1/31/2010 1:19 AM (GMT 0)
Scott I answered you on the other thread that you first posted above.
Posted 1/31/2010 1:41 AM (GMT 0)
Hi Scully,
Welcome to HealingWell. I was 44 when I joined the group in 2006. While we had different disease characteristics, it certainly is no fun to be diagnosed so young. You have many choices to proceed with, but you will likely have to consider some kind of intervention and you need to take your time and evaluate each one. I placed a high value on long term study data with treatment modalities and that was because at our age we have to live with long term results and side effects.

One thing you should know is that you have no need to rush into anything. Take your time. Prostate cancer is typically very slow and will give you time to decide what works for you. I am a surgery first guy, but you will see many biases towards therapies others have selected. I have also been treated with radiation and hormonal therapy so like many here, I have experience with multiple treatment side effects and results. In spite of having advanced prostate cancer, I have a full remission, too. And you likely won't need all I endured and can be effectively treated with many approaches.

Again welcome to the group.

Tony
Posted 1/31/2010 1:58 AM (GMT 0)
Hi Scott:

I was 45 last year when diagnosed with similar stats. I chose treatment because I had just lost my job (had time on my hands) and still had great insurance (through COBRA) and was uncertain what insurance I would end up with in my next job. If I had it to do over again, I would have waited. After I was diagnosed, I changed my eating and exercise habits and I lost 30lbs in 6 months.

My uro could not wait to do surgery. He said that since I was so young that it was my ONLY option. I assume that I felt the same way you feel now...Yes I AM YOUNG and I really do not want to risk the potential side effects of surgery at my age. Ultimately I chose Proton Radiation at Loma Linda....since you are so close, I would recommend that you at least check into that option. I am 7 months out and I am having some minor side effects, but nothing that I cannot handle. Guys our age that have been diagnosed will almost certainly have to make a treatment choice eventually... If you are confident that you will have good insurance going forward, I would advise you to do a lot of research, talk to people who have had various treatment options and keep tabs on your PSA every 3 (or at least 6) months.

I'll also bet that you were like me and did not have a PSA history to graph. Again, if I did not feel so rushed by insurance issues, I would have wanted to track my PSA velocity a bit longer before I acted. Everyone is different, for some, the anxiety will be too distracting and they will decide on treatment regardless of the PSA velocity. Good luck to you...keep your head about you, learn all that you can and try to relax through the process.
Posted 1/31/2010 2:07 AM (GMT 0)
I did plenty of research and determined that surgery gave me the best chance at long term survival. At 41 and 5 months past the procedure I still have ED and the recovery from it is slow but it is happening. I am 21 days into a 90 day program called p90x so as far as that goes my recovery is coming along very well. Incontinence is basically over. My stats were a bit further along then yours. Take your time, you could wait six months and i doubt it would make a difference. Choose what works for you.
Posted 1/31/2010 2:19 AM (GMT 0)
I had surgery because of a high gleason score, but I initially looked at BT. With your low percentage of PC (1/12 cores), I would think you would also be a good candidate for AS.

If it is a G6, and your PSA is low, you may be able to do AS for many years.

Just slow down, and learn all you can learn. This is not a death sentence, and there is no emergency here. Take some deep breaths, and start reading. Hopefully you saw the resource websites at the beginning of this forum.

Good luck, and stay tuned. There are many guys here to help who have gotten the same life changing words; "you have cancer".

Goodlife
Posted 1/31/2010 3:33 AM (GMT 0)
Take your time and make the right decision. I was 58 when i was diagnosed with a gleason 8 prostrate cancer in 3 areas. My best friend son was 39. I chosed external radiation and hormorne treatment. He chosed robotic surgery. He's doing great and withing 6-8 weeks he regained his normal life with minimum problems; and even tho mine is in check the radiation has damaged my intestines and the hormornes have eliminated my sex life and I have been in excruciating pain for over a year. I cant tell u what to do but if u are in good health i would suggest u have it removed and get it over with...Lucious
Posted 1/31/2010 3:45 AM (GMT 0)
I was 46 when diagnosed. My dad had it as well. As one doctor told me, any of the treatments could probably rid me of the cancer. They could get it all and I would be cancer free. The problem is, I probably had 40 years to live, I had the genetic marker for it, I had already lived the lifestyle to get it, and the odds are I would certainly get it again - not a recurrence, but a whole new round of cancer. Second time around my treatment options hadn't been invented yet. So, to make sure it was gone, and gone for good, I did surgery. I have virtually no side effects. Dry at 9 weeks or so, ED is a minor problem. I can get an erection drug free, but chemicals make it more fun and last longer. My buddy had it at 43 and he was having sex 11 days after the cath came out, drug free. The good news is, the younger you are, the less chances are of significant SE's.
Paul
Posted 1/31/2010 3:50 AM (GMT 0)
tongue Hi Scully, pc hit me at 46 years .I have my wife and two children and pc scare me, so I went for surgery.It is almost five years

thanks God my psa has been always 0.04. ed is ok and I can do some damage with that help of viagra.do your home work you

have time.

Posted 1/31/2010 3:57 AM (GMT 0)
Scully, Welcome you have voices your age speaking to you with what they have done and why they chose the treatment that was used on them. I was a bit older 57 at Dx and have been in the zero club since my surgery. You are doing the right thing by researching. I wish I had found this place before my treatment. Not that I would have changed anything but I would have had more knowledge.

Best of luck and do keep us posted as to what you decide to do.

Jeff T
Cajun Country or should I say Saints Country! yeah
Posted 1/31/2010 4:11 AM (GMT 0)
Posted on the New Prostate Cancer Info Link:
Gómez-Iturriaga Piña et al. have reported on the effectiveness and safety of iodine-125-based brachytherapy (125I-BT) when used alone (without adjuvant hormone therapy or external beam radiotherapy) as first-line therapy for men with T1-2 prostate cancer who are ≤ 55 years of age at their institution. This is a retrospective analysis of data from 96 men treated between May 1999 and November 2005. The median age of the patients at treatment was 53 years (range, 45-55 years). All patients were followed for at least 30 months and the median follow-up was 63 months. Only 1 patient experienced a biochemical failure, and the actuarial 7-year of biochemical relapse-free survival is 98.9 percent. Grade 2 acute and late genitourinary (GU) toxicity rates were 9.8%and 10.6 percent, respectively. Grade 3 GU toxicity (urethral stricture) was observed in 3 men and was corrected with urethral dilatation or transurethral resection. Two patients (2.2 percent) developed grade 2 gastrointestinal toxicity (proctitis). Erectile function was preserved in 85/91 men with prior good function (93.4% percent); 41/91 patients (45 percent) used phosphodiesterase-5 inhibitors. The authors conclude that, this group of younger men “experienced excellent bNED rates with low toxicity” and that “Men in this age group should be offered low dose rate prostate BT as an option to consider.” As usual, what we don’t know is what percentage of these men might have done just fine on some type of expectant management regimen.

Brachytherapy now has a lot of 15 year data and control for low risk PC is very good long term. I think it is unreasonable to expect that there will be significant reoccurance rate after 15 years as cancer just doesn't work that way. The longer you go without a reoccurrance the less chance you will have of ever having one.
Brachy is just as safe for younger men as for older men.
JT
Posted 1/31/2010 4:35 AM (GMT 0)
At 54, I passed on seed as with surgery I would know beyond a shadow of a doubt whether the cancer was gone or had spread. Also, from my understanding, once you elect for radiation, the prostate is so badly damaged that surgery becomes problematic with greater chances for complications. Gleason scores are the key per my consideration and with a gleason of 8 I opted for DaVinci. As we say over and over, every guys gig is different per their world.
Posted 1/31/2010 4:53 AM (GMT 0)
Thank you for everyone's insight. We are lucky to be living in the age on the Internet to get so much info and communication so quickly.

I wasn't aware that post-radiation surgery was so potentially problematic. I will continue to research as the incontience and decrease in testosterone over time scares the hell out of me.

Has anyone else in their 40s or early 50s - who has had the removal surgery - experienced side effects associated with testosterone decrease (loss of energy, weight gain, inability to workout to full effect, etc.)?
Posted 1/31/2010 4:55 AM (GMT 0)

Scott,

Like you I was diagnosed at age 43. No AS for me too many variables as to the true extent of the cancer growth in my prostate. The only way to know for certain what was going on in there was to have it taken out and examined. It sucks to be diagnosed with this beast at any age but at our age we have the a better chance of recovering from the side effects.

I was dry within two months. ED saw progress really begin at around 7 to 9 months. At one year I really saw progress with ED. I had been taking cialis and viagra for therapy as per my doctor's orders. Now ED is no problem as I can have an erection with visual stimulation alone with no ED meds.

Like other guys here I wanted this invasive, parasitic, killer out of my body once and for all. It will only continue to grow until you decide to treat it however you choose. I wish you well in your battle against the beast.

Posted 1/31/2010 5:06 AM (GMT 0)
Scully, had surgery at 57. Very experienced surgeon. Robotic surgery. Everyone is different, but my surgery was relatively easy. Nerves spared, essentially no ED or other side effects. Goob luck.
Posted 1/31/2010 5:13 AM (GMT 0)
You may be misunderstanding the ED as a loss of testosterone. It is the nerve damage that causes the ED. Your testosterone levels will remain unless yiu need to undergo hormone therapy. Your desire for sex will probably be the same. It just may take some chemical and mechanical work to make willie work.

Goodlife
Posted 1/31/2010 5:41 AM (GMT 0)
Goodlife is right, make sure you understand the anatomy of what's going on. Surgery does not affect the testosterone level.

You didn't mention your family status. If you're considering having (more) children, know that you can save up at a sperm bank before you do whatever treatment you choose.

Good luck,

DJ
Posted 1/31/2010 6:04 AM (GMT 0)
Post radiation surgery is problematic, but everone assumes that this is the only option.
Reseeding, HDR Brachytherapy, cryosurgery and HIFU are all salvage options with the same success rate as salvage radiation after failed sugery.
JT
Posted 1/31/2010 6:14 AM (GMT 0)
Scott,
While somewhat rare, testosterone loss post intervention for prostate cancer is very treatable. AndroGel and other ways are available to help with drops in T levels. Usually T level drops are cause by sexual inactivity after RP, but again it is treatable. Most doctors would prefer that your body naturally produce testosterone as your body gets lazy producing it if you are using synthetics. But they also know that low T levels can negatively affect your quality of life. (QoL)

In a different way, my T levels were near completely ablated by chemical therapy. After two and a half years on ablation therapy my T levels have been on the rise. With that has been the return of sexual function and feeling normal again. I am an extreme case and most men in their 40's don't have low T levels. But again, it is treatable...

Tony
Posted 1/31/2010 12:11 PM (GMT 0)
Age at dx 53. I was presented with a choice of radical prostatectomy - open or robotic, vs. radiotherapy in two or three possible flavours. Eventually decided to have an open prostatectomy for two reasons:

    first - in the event of the chosen treatment mode failing, you can have radiotherapy as a second line treatment after prostatectomy; this option does not work the other way round, ie. it is generally not possible to operate on previously irradiated tissues, and surgeons willing to offer salvage prostatectomy after unsuccessful radiotherapy are few and far between

    second - I chose open prostatectomy after finding out how steep the learning curve is for a surgeon going from the open to the laparoscopic technique.
    See www.ncbi.nlm.nih.gov/pubmed/19021612 My surgeon has done well over 1000 open prostatectomies and decided not to offer laparoscopic surgery at all because, as he put it, he would consider it unethical to expose the first 200-300 patients to the risk of sub-optimal outcomes while he was learning the new ropes.

Well over two years after my RP, I have no regrets about my choices.
Posted 1/31/2010 2:29 PM (GMT 0)
Scully,

From my understanding testosterone levels have nothing to do with prostate issues. The nerve bundles lay across the prostate and they layer them off of the prostate during surgery. That is another difference from radiation as I do not think they have as much control in protecting the nerve bundles...but that is simply my opinion. This disruption/damage renders them dormant in most cases until they recover. I am almost 3 months out of surgery and still major ed with no reaction and this is normal. Those that have had little ed, namely recovering inside of 4 months are by far the exception to the rule. Recovery from the nerve disruption can take anywhere up to 2 years depending on disruption and whether they take one of the bundles. You must talk about this with your doctor in advance or he will make the decision for you if you have an aggressive type cancer in gleason score. My surgeon took my left side bundle due to high gleason of 8, but we did not discuss and that was my fault. Turns out there had been no spread outside of the margins, but it was a statistical judgment call. I assumed that both would stay. My issue will be how well I respond with only one bundle. Regardless, I am following the 3 "P"'s of therapy to get back in the game.

Per surgery, the key is the surgeon and experience per DaVinci robotic surgery etc. If a surgeon doesn't do DaVinci, imho, I wouldn't use them because it simply means they have not been trained in it, so they only do open surgery which involves a huge scar and major blood loss in comparison to DaVinci robotic.

Keep searching for information as it can only help you. Per my research at 54, which is young in the prostate cancer spectrum, surgery was a quick decision as if it had spread then I always had radiation as a back uo. If you go radiation first, then there is no second radiation from what I was told. Conclusion: Surgery gave me more options and an immediate answer as to whether I was cured.
Posted 1/31/2010 3:30 PM (GMT 0)
Dear Scott:

Sorry you have to be here with us but you have found a good place for information and support.  The information part is both good news and bad news.  First of all you need to realize that most posters here have had surgery and many of them will display a pro-surgery bias.  Some of them will readily admit this and some will not.  Personally, I had brachytherapy and don't mind telling you that I do have a bias toward that treatment.

Also, most of the information you get here will be good...however some will not.  Just on this thread one poster states "...with surgery I would know beyond a shadow of a doubt whether the cancer was gone or had spread. "  Unfortunately, that is patently untrue.  There are many posters on this forum who have been told by their surgeons that they have "clear margins", only to suffer a rising PSA and recurrent cancer post-surgery.

I do agree with the information that post radiation surgery is problematic.  I knew that when I was making my decision for brachytherapy.  However, I did the research and discovered that there are many reasonable salvage treatments after radiation that provide the same or better level of success than post surgery salvage radiation treatment.  Here is a link to a recent thread that may give you some perspective on this: https://www.healingwell.com/community/default.aspx?f=35&m=1700359

I agree with others that the first, best advice is to take your time and get fully informed.  There are many resources referenced on this site that are terrific...use them and learn.  This is one of the most important decisions you will make and may affect your life and quality of life for the rest of your life.  Either surgery or radiation is likely to cure you.  There are pluses and minuses to both and you need to understand them.  And, look into color doppler for staging your cancer.  I did not know about that when I was researching my options but now I am a believer (thank you, JT) and strongly encourage that.

Make sure you get multiple opinions from surgeons, radiation oncologists and prostate oncologists.  Then you will have a wide field of perspectives.  Finally, make sure the doc you choose has performed hundreds of procedures in the treatment of your choice.  There are many definitive studies linking success to experience.

Good luck and please keep us posted on your journey,

Tudpock

Posted 1/31/2010 4:24 PM (GMT 0)
A year ago to the day I made my decision: take it out. Reality-wise, if you worry about the effects of a surgery, radiation seeds, radiation beams, hormone Tx ect, there is only one answer: if a cell escapes surgery through a positive margin you still have the option of radiaition. If you start with seeds, hormones etc, surgery down the road is probably out. The other Tx's dont offer anything as definite or as conclusive as surgery, particularly if it is still contained.

Post Edited (zampilot) : 1/31/2010 10:04:25 AM (GMT-7)

Posted 1/31/2010 4:48 PM (GMT 0)

Tudpock18 said...
... most posters here have had surgery and many of them will display a pro-surgery bias. Some of them will readily admit this and some will not. Personally, I had brachytherapy and don't mind telling you that I do have a bias toward that treatment.

Excellent point. I think you'll find most posters here who have had successful treatment (whether surgery, HIFU, brachy, whatever) will have a bias favoring that approach. Readers need to recognize that fact as they read through our experiences.

Also remember that all we can present here are essentially anecdotes; medical literature and a trusted urologist (and ideally a second opinion) will provide more statistically- and scientifically-valid perspectives.
Posted 1/31/2010 4:49 PM (GMT 0)
Hi Scott,

I'm now a lurker 2 years after surgery, but if there's one thing which will get me to post it's a young patient looking for advice and (even if you didn't say it) hope that there can be good outcomes from this disease.

As you can see from my signature, I was diagosed at 45 and "quality of life" after treatment was my main motivator in deciding treatment and, in my case, finding the best surgeon. I am happy to say that, 2.5 years later I have perfect PSAs, never had any incontinence and everything works pretty much like it always did. But the cancer was only 1mm away from breaking out and, as my surgeon (one of the top guys in the field in Germany) said: PCa in a patient in his 40s often means it can be an agressive form.

Good luck with your decision. I found that being extremely active in researching and choosing my treatment gave me back the sense of control which I lost with the diagnosis. Ultimately I chose surgery for the reasons given by other posters: that it leaves other options on the table should you need to go back a second time.
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