HealingWell
Search Close Search
☰

Just Been Diagnosed

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/16/2011 9:27 PM (GMT 0)
This is my initial post, as I have just been notified by my doctor that I have Prostate Cancer. The biopsy revealed a gleason score of 6. My most recent PSA was 2.9. Free PSA was 13.1. The DRE exam was normal.

I will meet with my urologist next week to discuss options. I intend to ask that a second pathologist review the biopsy. My urologist is associated with the Medical University of South Carolina (MUSC). I've heard good things about Boswick Labs, and will probably request their review.

While my urologist specializes the Robatic (Da Vinci?) surgical procedure, my initial thought is to treat the cancer with a combination of radiation seed implementation coupled with some form of external beam radiation. I'm just more concerned with the life altering complications that sometimes accompany surgery (incontinence/impotence).

I have been doing some reading on the subject - just in case. I thought I could learn a lot from this forum - so here I am!

Now, I think I'm gonna have a beer - or two!
Posted 11/16/2011 9:34 PM (GMT 0)
Welcome to the site and sorry you have to be here.

If you have any questions - lets us know.
Posted 11/16/2011 9:37 PM (GMT 0)
Jimmy,

Welcome to HW,sorry you have a need of us, but glad you found us.

Sounds like you already got a good plan in place, researching all your options. With a Gleason 6 diagnosis, you have plenty of time to make a learned decision in how to treat your cancer.

Please fire away with any questions, and if you ever need to vent, this is the place to do it, we can take it!

And please keep us posted of your journey.

David in SC
Posted 11/16/2011 9:42 PM (GMT 0)

Hi Jimmy,

The initial shock of the diagnosis is kinda like a mule-kick to the head, huh? It defintely was for me. In your case it sounds like they caught it very early through a routine PSA test which is very good. Once you absorb a lot of info here and other places it get a lot less scary. I'm fairly certain nobody on this forum is gonna tell which way to go as far as treatment options. There are so many pros and cons with each one and you'll have to make the decision yourself. Your age has a good bit to do with it. I was 54 at diagnosis and opted for the Da Vinci. Not gonna say it was a walk in the park, but 10 weeks after surgery I feel completely normal again with no incontinence and some ED problems which I'm making progress on right now.

Hope it works out well for you and keep us updated.

Steve

NolaVette

Posted 11/16/2011 10:10 PM (GMT 0)
Jimmy,

Sorry that you are here, but it is a great place for both support and info. Sounds like you are in the South Carolina area. With your diagnosis, you might want to take a look at proton beam therapy (I am the "official" cheerleader here for proton :-)! ). Hampton University in Virginia has just opened an incredibly impressive proton center that you might want to take a look at. I just finished proton therapy treatment at IU Health Proton Therapy Center at Bloomington, Indiana. You have a lot of options available, so take some time and investigate all of them.

Best of luck on whatever you wind up doing

Steve
Posted 11/16/2011 10:22 PM (GMT 0)
While my urologist specializes the Robatic (Da Vinci?) surgical procedure, my initial thought is to treat the cancer with a combination of radiation seed implementation coupled with some form of external beam radiation.

i had combination treatment performed on me starting with a shot of lupron in february last year, and ending with a shot of lupron in september (also last year).  in between those shots i had seeds implanted and i also received IGRT.  i have never experienced any incontinence and though my erectile ability is somewhat impaired i can have normal intercourse with the aid of cialis.

my uro is also a surgeon who specializes in open prostatectomies.  his partner does da vinci.  both Drs are very experienced.  my uro advised against surgery because of the likelihood that my cancer had already escaped the capsule.  with your numbers i would definitely be looking into seeds and if you are willing to go a little further by adding direct beam to the mix i think that's better yet.

i may have a problem with ED one of these days but i'd prefer it this way than the other way.  and most likely i'll never be incontinent.  good luck in whatever you decide and welcome to the place where no one wants to be smilewinkgrin !

ed

 

Posted 11/16/2011 10:29 PM (GMT 0)
Sorry to hear that. But, your case does sound's like you will have all the treatment options before you to consider. Most of us i think would urge you to take the time to visit and consult with some other treatment facilities and keep an open mind. I think this is the most upsetting time you are in, trying to make a decision. Side effects are a serious matter and proton beam seems to have a good reputation for saving your natural functions. However, some. like me, rule that out due to having to live where the treatments are given for a couple of months as there are only maybe 5 of these facilities in the usa. Good luck in making your decision and the outcome.
Ron
Posted 11/16/2011 10:44 PM (GMT 0)
As others have said, take your time in choosing a treatment and in choosing where and by whom you have the treatment.

With your stats, you've got plenty of time.

I understand your rationale for preferring radiation over surgery, but I think ED is also a side effect of radiation.  Not immediately, but over a few years.  I had surgery so I'm biased.  There are pros and cons for each method.

Posted 11/16/2011 10:49 PM (GMT 0)
Hey jimmy42,

Welcome, and sorry you need to be here.

One somewhat new treatment that many guys are opting for is Cyberknife (CK).  Google it ... it might be a non-invasive procedure that could be of interest to you.

You indicated you were concerned about life altering cosequences that could accompany surgery.  Here's a link to an excellent video presentation titled "Sexual Problems in the Male Cancer Patient", concerning Erectile Dysfunction by Dr. John Mulhall of Memorial Sloan Kettering and author of the book "Saving Your Sex Life." Consisting of 4 parts, total time of about an hour and a half, it contains an address to a PCa Cancer Patient group and contains one of the most through and up to date information available. Well worth the time for anyone who is contemplating their method of treatment after a PCa diagnosis.

www.mskcc.org/mskcc/html/94910.cfm

Posted 11/16/2011 10:56 PM (GMT 0)
Jimmy,
Combination treatment is probably an overkill in your situation. A higher Gleason, indications of a large tumor volume or tumor close to the margins are all better served by combination seeds/Imrt. sine you have no indication of any of these a mono treatment with just Brachy should be more than sufficient. Just make sure you get a brachytherapist that has done at least 500 procedures. I had the combo treatment and three years out I still have no side effects and a psa of .1, down from 40.
JT
Posted 11/17/2011 1:37 AM (GMT 0)
WOW!

What a group of caring people you are to respond with so much thought to my diagnosis. I am overwhelmed, and thank-you very much. I'll know much more about my particular situation after my appointment next Monday. I already had many questions to ask - but, thanks to you folks, I now have a few more.! I have a positive frame of mind, and look at this diagnosis as more of a "nuisance" than a threat.

Thanks again. Jimmy


P.S. I'm 66 yrs old, and live in Pawleys Island, S.C. - between Myrtle Beach and Charleston.
Posted 11/17/2011 5:20 AM (GMT 0)
Jimmy42,

So sorry that you too have PCa, it sucks big time. But as you have just found out. if you post a question, or want to validate an emotion, just fire off what you are wondering about and we that have been down the road will give you the best possible advice from our experience. I literally walked in a state of fog and felt numb for the first six weeks. I would encourage to have some one go with you to all of your appointments. You have so much going on in your mind, it is hard to concentrate on what the doctors are saying and recommending. If you have a companion go, you can talk in detail and they can share with you what they heard. Some take tape recorders to their appts and then listen to it after, and multiple times. You are have so many new words thrown at you, so many new procedures that you have never heard of.

Many will come back and post questions after they have attended their appointments for clarification.

Sorry you are part of the brotherhood. I know you will personally benefit from this great HW forum. I sure have.

Best wishes on you PCa journey.
Posted 11/17/2011 11:42 AM (GMT 0)
Jimmy42,

Sorry to hear about your diagnoses. As others have responded take your time in deciding the treatment course, talk to others who have gone through the journey, ask questions, talk to various physicians on your team, Urologist, Family doctor, Oncologist etc. before making a final decision. A great book to read if it has not been mentioned with plenty of excellent information is the "Guide to Surviving Prostate Cancer" by Dr. Patrick Walsh.

Good luck!

Posted 11/17/2011 12:47 PM (GMT 0)
Jimmy, welcome to HW.  Sorry you have to be here but I'm sure you will find this is a good spot for both support and info.

Getting a second opinion on your pathology is a very good idea; sounds like you are on top of this and Bostwick is a good choice.

As JT said, you may want to consider treating your PCa with brachytherapy alone.  With your stats that is likely to provide a cure and the chances of cure are just as high as with surgery.  You will want to consult with an experienced radiation oncologist for a full discussion of your radiation options.  As another poster said, ED is also a possibility with radiation treatment.  What he left out was the fact that even though ED, if you experience it, is likely to occur later with radiation it is also likely to occur less frequently than with surgery.  If quality of life is important to you, you might want to google "New England Journal of Medicine Quality of Life Study".  This was done a couple of years ago and provides ample evidence of how patients view the less onerous side effects of brachytherapy compared to surgery.

If you are interested in reading a long-winded first party view of the brachytherapy experience, feel free to copy and paste my "journey" at the end of my signature.  I'm coming up on three years post brachy with still falling PSA and no lingering side effects.  And, as you can see, my early side effects were very minimal.

Good luck and keep us posted,

Tudpock (Jim)

Posted 11/17/2011 2:50 PM (GMT 0)

Tudpock18 said...
Jimmy, welcome to HW. Sorry you have to be here but I'm sure you will find this is a good spot for both support and info.


Getting a second opinion on your pathology is a very good idea; sounds like you are on top of this and Bostwick is a good choice.



As JT said, you may want to consider treating your PCa with brachytherapy alone. With your stats that is likely to provide a cure and the chances of cure are just as high as with surgery. You will want to consult with an experienced radiation oncologist for a full discussion of your radiation options. As another poster said, ED is also a possibility with radiation treatment. What he left out was the fact that even though ED, if you experience it, is likely to occur later with radiation it is also likely to occur less frequently than with surgery. If quality of life is important to you, you might want to google "New England Journal of Medicine Quality of Life Study". This was done a couple of years ago and provides ample evidence of how patients view the less onerous side effects of brachytherapy compared to surgery.



If you are interested in reading a long-winded first party view of the brachytherapy experience, feel free to copy and paste my "journey" at the end of my signature. I'm coming up on three years post brachy with still falling PSA and no lingering side effects. And, as you can see, my early side effects were very minimal.



Good luck and keep us posted,



Tudpock (Jim)



Hi Jim:

I just finished reading your brachytherapy experience post. Thanks very much for the link. It was informative, and reinforced my initial inclination for a non-surgical treatment strategy. However, I do realize there will be a lot of information coming my way to consider before making a final decision. As the Chinese proverb goes "the longest journey starts with a single step". Thanks Again. Jimmy
Posted 11/17/2011 4:00 PM (GMT 0)
Since you're leaning towards a non-surgical treatment I advise you to watch the video from  the link below. It's a great video explaining the disease and all its treatment options. I underwent the TFT which is a far less invasive clinical study that destroys the cancer and not the entire prostate. Although to undergo it, it's available only a few locations as of now. Whatever treatment you choose if any do take your time in deciding for there aren't any do overs and the results you'll live with the rest of your life. Good luck.


http://3dprostate.com/

Posted 11/17/2011 4:30 PM (GMT 0)
Jimmy,

Condolenses on the diagnosis.  My advice, as has been stated by a couple of folks, go very slow.  With your pathology you have plenty of time.  There are still diagnostic tools you can use to help you decide what actions to take.  You can give it some time to see what your PSA velocity is, you can get an MRI to see what it shows.  There is a wide array of treatment options, there are even focal therapies, using HIFU and Cryo, where they only treat part of the prostate and leave part healthy, so little or no side effects.  Read the Walsh book, read the Scholz book.  It could turn out that you don't need to do anything but monitor this for years yet or it could turn out that you need to take quicker action.  Just don't rush into anything and don't take anything your doctor says at face value, poke into it.  He may be great, but treatment options are moving at a fast pace and he may not be up to date on everything, plus he's human, so he's got some biases.

Good Luck,

Dave

Posted 11/17/2011 4:50 PM (GMT 0)
Jimmy,

I had a combo of seeds and IGRT almost two years ago. I made my decision based on the same quality of life factors you are considering. I have been very satisfied with the outcome. No serious side effects and PSA currently at 0.1. While I would do the same thing again, I do agree with several of the posters above who suggest that seeds alone may be all you need with your "numbers". Best wishes on your journey.

Joe
Posted 11/17/2011 4:52 PM (GMT 0)
Jimmy,

I had a combo of seeds and IGRT almost two years ago. I made my decision based on the same quality of life factors you are considering. I have been very satisfied with the outcome. No serious side effects and PSA currently at 0.1. While I would do the same thing again, I do agree with several of the posters above who suggest that seeds alone may be all you need with your "numbers". Best wishes on your journey.

Joe
Posted 11/17/2011 5:20 PM (GMT 0)
Jimmy,
Welcome and I echo everyone else’s comments, you have time to look fully into all the treatment options available to you and, with a G6, all options will be 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 my husband 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 (seeds only).
He is now 9 months post implant, zero side effects and his journey thus far has been pretty much as described on the tin!
Wishing you all the best with your journey.
Oh and the beer can only help in my humble opinion!
x
Posted 11/17/2011 6:53 PM (GMT 0)
Jimmy

I have nothing to add to all the info given you already.

I do extend my welcome to our family here.

Bud
Posted 11/17/2011 7:05 PM (GMT 0)
sure, seeds may be all you need.  but factor in that as many as 40% have their cancers upgraded after surgery.

case in point:  dana jennings ( http://well.blogs.nytimes.com/2010/12/29/in-praise-of-nurses/) was upgraded from G7 to G9 after surgery, and he soon afterwards required salvage radiation. 

ed

Posted 11/17/2011 10:15 PM (GMT 0)
How old are you Jimmy 42? 42? Just wondering because I'm 42 as well and just had open radical prostatectomy at Johns Hopkins. I'm 12 days post op. But for me, this procedure was recommended so they could actually look at and touch things. I was lucky enough to have both nerve bundles spared and never had any erectile problems before so the Dr and I are both VERY hopeful things will be ok. And I'm now working on continence. My path was gleason 6, organ confined, no lymph node or seminal vesicle involvement. Your age might play a role in your decision. Good luck. It must all seem scary, but trust in the professionals once you find the ones that are best for you. They know what they're doing.
Posted 11/17/2011 10:19 PM (GMT 0)
this procedure was recommended so they could actually look at and touch things

sounds like a surgeon made that recommendation.

ed

 

Posted 11/17/2011 11:49 PM (GMT 0)
Yes, F8, that's correct. I just felt it was right for me. I know the on-going disputes on this board about surgeons and oncologists. :-) Ultimately, we all make our own decisions. ;)
✚ New Topic ✚ Reply
12