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Posted 11/2/2011 8:24 PM (GMT 0)
Hi all, I just starting on this journey and am trying to sort through the overwhelming amount of info.  Anyway, the following is what best describes me:

Age: 46, excellent health (or so I thought)

PSA:  7.8

Gleason:  3 + 3

Biopsy:  6 of 12 cores positive (all on right side - 0 on left side)

% of Cores Positive:  5%, 15%, 5%, 5%, 25% & 15%

I've decided to have the prostate removed and have met with 2 Dr.'s in the Boston area.  One has done 600 + robot and the other does only open of which he has performed 3,500.   I know I shouldn't feel this way but honestly my main concern at my age is not the cancer.  I am scared to death of the impotence and incontinence side effects  confused  .  I have 3 beautiful children and a loving wife and of course they mean the world to me but I can't get the "quality of life" thing out of my head.  Especially when my "open Dr." says I have a 95% chance of success with the cancer, 70-80% chance of no incont. or ED IF he can spare both nerves of which there is a 50% chance he can't.  If he can only spare 1 nerve he said I'd have a 60-70% chance of incont. or ED.  Needless to say this was a little sobering for me. 

I think I've had a great attitude up to this point but after today's news it's set me back a little.  

Could I still have continence and full erections with only 1 nerve spared?

Thanks.

 

Posted 11/2/2011 8:31 PM (GMT 0)
Dear Cepas:

Welcome to HW.  Sorry you have to be here but you will find lots of both support and information on this site.

Have you discussed your case with an experienced radiation oncologist?  Based on the stats you presented, you might be a good candidate for brachytherapy (seeds). It is a much less invasive procedure, equally curative as surgery with generally much less onerous side effects.  Even if you decide against it, you should look at this option so you can make an educated decision.

Good luck and please let us know how your progress.

Tudpock (Jim)

Posted 11/2/2011 8:32 PM (GMT 0)
Welcome aboard.

I had open surgery, only the right side was left intact, wasn't really spared, surgical difficulties made it impossible for surgeon to remove. I had very minor incontinence issues for about a month or less, and have never had a day of ED. Lucky, perhaps, but that's my story.

david in sc
Posted 11/2/2011 8:41 PM (GMT 0)
Cepas-
- welcome to the club no one wants to be a member of.
- you can get great patient-to-patient support here - some have stronger opinions about what course of treatment to take (open surgery / robot surgery / seeds/ RT, etc..)
- the BEST thing for you is to do research (yes, it does get overwhelming) to find the best Treatment - the best Doctor - the best Hospital for you.

-even with 2 nerves spared the body can get confused after surgery and have difficulty with ED - it all depends on where the cancer is located and how close to the nerves

- you can ask what is more important - to get a "stiffie" or get rid of the cancer. - the quality of life - the quantity of life - is often the toughest decision you have to make - and only you can come up with the Answer that is best for you.

- even with 1 nerve spared - the body can recover and you can have a "new normal" with intimacy -with little or no ED issues -

-continence is a separate matter relating to the realigned sphincter, the bladder, muscle control, etc.-some recover quickly, while others take a while - and others need support after the body has healed.

-HW is a great resource - see the listings and such up at the top of the page - as well as support and a great place to rant.

-keep in touch
all the best,
Bronson
Posted 11/2/2011 9:35 PM (GMT 0)

Cepas

It wasn't all that long ago that I wrote my first post.  I got welcomed into to this club just like you.  And I didn't want to join it either.  I have learned so much here and the knowledge base is great. But I'm sure eveyone here wishes that they had never heard the word cancer.

I won't make any suggestions as I consider myself new and learning as well has you.

Me being a gleason 9/10 surgery wasn't suggested due to the fact that the cancer could be already out of the bag, so to speak.

I completed 44 treatments of IMRT and have very little side effects from it.  I'm told it has the same curative rate as surgery. You could also do brachytherapy (seeds) with or w/o IMRT.

So just like Tudpock (Jim) mentioned, you might want to get an opion from an experienced radiation oncologist. 

Just a thought.... Good luck what ever you decide to do.

Oh one more thing.... GEAUX TIGERS on Sat!!

Posted 11/2/2011 9:59 PM (GMT 0)
Cepas,

Incontinence and ED are very likely to be independent outcomes. It may be cliche, but I went on the following priority order: 1) Get rid of the cancer, 2) urinary control, and 3) erections. A lot of men, but not all, regain good urinary control within weeks or months. ED often takes longer. But, there are a number of ED solutions that are available.


 

Posted 11/2/2011 10:01 PM (GMT 0)
Cepas,

Welcome to our fraternity no man rushes to join. You will find as much information and opinions as you can digest From all the great guys and even some gals who post here and have been where you are right now.  At least you found us early, I didn't find HW until 4 weeks after my surgery.  Understand one thing your cancer is slow growing and you do not have to jump into anything all that quickly. Take your time and investigate all your treatment options. Living in the Boston area you should have countless options for all treatments.

I had robotic surgery in June and my URO and surgeon had about 700 of them under his belt and he and DaVinci did a great job. I am full continent and have been since week 4. I do have ED and had it before surgery but it improves everyday. It can take up to 2 years for spared nerves to heal from the trauma of surgery. It can also take up to a year to get 100% continent.  In this forum there is only one right decision you will make for your treatment and that is the treatment you make for yourself as you are the one who will live with it.

Terry The Water Guy

Posted 11/2/2011 10:37 PM (GMT 0)
Cepas,

Welcome to HW. Hope your fear will turn to respect. Through knowledge, I think you will find that your odds are good.

I think a general statement would be that younger men seem to recover better. Many times the older men already have some issues.

I also would recommend that you give Brachytherapy a good look, particularly with a Gleason 6. We have many guys on here who have done very well with it.

Good luck, and keep us in the loop. No stupid questions on here.
Posted 11/2/2011 11:32 PM (GMT 0)
Thanks for the help and support guys.  It's all still sorta surreal.  Regarding radiation or seed therapy, I do have an appointment scheduled with a radiologist/oncologist on Friday.  I'll let you know how I make out. 

This forum definitely does help.  I've always prided myself on not being a "why me" type of guy.  I figure, why not me?  Today though, after my appointment, I slipped.  Thanks for getting me back on track.

I'll keep in touch.

Posted 11/2/2011 11:49 PM (GMT 0)
Cepas,

Welcome to HW. None of us want to be here but if the need arises, it is a great place. Your stats seem to indicate that you have caught it early and you have time to explore all your options. None of the treatment options come without any risks or side effects. Even doing nothing (active surveillance) has it's potential risks. Some of the side effects get better with time and some have the risk of deteriorating with time. Your objective is to gather as much information about the various treatment options and make your decision that gives you the best probability while mitigating the risks/side effects important to you and never look back on your decision. Use HW members, books recommended on this site, healthcare professionals, friends and family.

I had my DaVinci surgery in August and I'm doing great. My incontinence is a minor issue and was short in duration (weeks). Drinking moderate levels of alcohol is an incontinence challenge for me, but managable. I consider my ED an insignificant issue (80%+ to the good and still early). First post surgery PSA zero. Substantially better energy level and lower back stiffness gone.

Everyone's situation and experience is different even with similiar stats and treatments. Most of us have our favorite treatment option (mostly likely the one we experienced, but not always). Positive attitude is helpful. No reason to fear the worst at this time. Live for today and handle the challenges as they come, if they even come at all. This is all that you can do anyhow. I wish you the best in your journey and look forward to hearing about your progress. Good Luck.
Posted 11/3/2011 12:06 AM (GMT 0)
Hi Cepas,

Any treatment has side effects and brachy seems to offer you a better choice than surgery. Close to zero chance of incontinence, and at worst, delayed ED.

I don't know whether you have considered AS (Active Surveillance), but if you couple that with serious lifestyle changes ~ like diet, supplements, exercise, stress reduction, you may be able to defer treatment for a year or two. Controversial of course, but in your situation, I would do that.
Posted 11/3/2011 1:00 AM (GMT 0)
Welcome. You have got a lot of good advice here, also notice the link at the top of the discussion topics which has many good resources for learning more.

Let me strongly support you in your concern about incontinence and ED as possible side effects. I think that you are correct to weigh this in your treatment decision -- especially since there are many options. It is too easy to take a "bite the bullet" attitude and ignore things which you may have to live with for the next thirty years.

In terms of open versus robotic surgery, I have been surprised to find in the medical literature that there is very little difference in risk, recovery time, or outcome. Remember that what the surgeon does inside you is the same no matter how big the incision.
Posted 11/3/2011 1:29 AM (GMT 0)
Cepas,
You can thank your doctor about being honest with you about the side effects of surgery. Many patients are too optimistic about the treatment side effects. As Tud suggested you owe it to yourself to investigate other options that may have less onerous side effects. In general radiation, especially Brachytherapy has been shown to be just as effective if not more than surgery with the probality of having less side effects. In your case with a G6 cancer just about any treatment will result in a high cure rate, 90% or better, but all have different side effects. Do your research and make the choice that best suits you lifestyle and needs.
JohnT
Posted 11/3/2011 3:34 AM (GMT 0)

Hi Cepas. Darn it, I hate to see you here! At least not at 46. This disease has no respect for anyone.

Since you are here, Welcome.

Right now you are in one of the most difficult phases in your way to treatment......which treatment to choose. Your Gleasons score seem fairly low, so you have several options. Which ever option you choose, it will be the rIght one for you.

We are all here to help in any way we can.

I wish you all the best in you journey and a quick and complete recovery from what ever route you take.

Mag

Posted 11/3/2011 7:22 AM (GMT 0)
Hi cepas,

This is a warm supportive place come to, it has certainly helped me and my husband over the last year and a half.

Just looking at your stats, it seems that every one of the biopsy needles came back positive on one side which would indicate that there is a volume of cancer on one side. That, with your age would suggest to me that active surveillance may not be the best idea. But there are many schools of thought on this.

My husband did surgery, with the thought that if it spead there would be the option for salvage radiotherapy but I think brachytherapy would have been a pretty good idea. It kills cancer within the prostate and if there is localized spread then it kills that too. It's plan A and plan B all in one hit.

Sorry that you have had to face this in your mid forties, for prostate cancer this is very young. Do you have a family history of the disease on either the maternal or paternal line? My research into this showed that a large proportion of men who get prostate cancer young have heridetary prostate cancer and this was the case for my husband.

Welcom again and regards,
An
Posted 11/3/2011 11:09 AM (GMT 0)
Welcome Cepas,
Despite it not being what you had hoped to hear at the time, you have been fortunate that your surgeon has been so open with you about possible side effects, which all too often appear to be glossed over. Take your time, as mentioned above you don’t need to rush into this. Look fully into all the treatment options available to you.
All of our journeys are different and you need to make the decision that is right for you then no looking back, focus totally on your recovery.
For Jeff, once he had digested it all, it was an easy decision based wholly on which treatment he felt would give him the best QOL and that, for him, was Brachytherapy.
Wishing you all the best with your journey.
x
Posted 11/3/2011 11:28 AM (GMT 0)
Cepas

I have no more info to provide. I do join the others and welcome you here.

I found, and continue to find, our community here in HW to be a welcoming and informative experience. You have now earned the right, unfortunatly, to become part of a family of genuine caring and supportive brothers and sisters

Best of all on your journey

Bud
Posted 11/3/2011 2:04 PM (GMT 0)
Thanks again folks. Doing better today.

An to answer your question, no, there is no history of pc in my family other than a first uncle. My father (age 70) has had a TURP procedure but still no cancer. I had one grandfather that live to the age of 86 and my other grandfather died at 55 of a rare form of leukemia which they believed that this was a result of his time in WW2. I was told that he was one of the first occupying troops sent into Hiroshima or Nagasaki after the bomb. Other than my uncle, all are negative.
Posted 11/3/2011 8:38 PM (GMT 0)
Cepas, welcome aboard.
I have no more advice for you than what has already been posted. Just know that you can always come here for questions and guidance. You can even come here just to vent when things are over whelming. Keep us posted and Good Luck.


Dave a.k.a Slink
Posted 11/4/2011 1:53 PM (GMT 0)
Welcome. Sorry you have to be here. You will probably have many choices available to you. Take your time and educate yourself to all treatment options. You can see what I went through by clicking on the link in my signature.

You are going to be okay. Good luck to you.
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