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Old 12-07-2008, 08:47 AM   #16
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by Trace212 View Post
...
He is most worried about the ED and the incontinence.
...
A couple additional points to my prior post-- sometimes people quote statistics for the percentage of patients that have a certain side effect. One thing to understand is over what time period they are referring to. Patients that undergo a successful nerve-sparing surgery, either open or robotic method, will have ED for some time, maybe six months to 1 1/2 years, but then often recover completely. For some kinds of radiation, there is less of an immediate impact, or none, but over time, there can still be problems. (Meds such as Viagra or Cialis certainly can make a big difference though.)

With incontinence, some having surgery have minimal or no problems, others have significant problems. Again, it can be difficult at the beginning but not a problem in a matter of days or weeks. For proton beam radiation, the treatment I chose, there is rarely any incontinence, although there can be some minor side effects like urinary urgency and weak stream during a portion of the treatment period- made less of a problem with medications like Flowmax. Other treatments have a range of potential incontinence problems.

 
Old 12-07-2008, 09:33 AM   #17
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Re: My husband was just diagnosed with Prostate Cancer.

Please tell your husband that he is experiencing the same feelings and emotions and fear that all of us who found out we have cancer are feeling. I was diagnosed in Sept. and was just in shock for a few days. Here I am 62, thought I was in great health, active and looking forward to many fun and productive years in retirement.

I was just plain old scared knowing I had cancer inside me. So for a few days I was like in a trance, just making motions but not able to focus. Finally, after a few days I decided that mindset would not help me and began going to library, websites, etc. to research. Daff is on target and was helpful to me with his advice and counsel. He has done a lot of homework on this disease and is so good to share it with others. My urologists recommended surgery and went through other options with me and my wife and recommended we get a second recommendation from a radiologist. You all should consider getting a second opinion review from , if possible, a team that would have a urologist, radiologist, oncologist, etc. to help you get this figured out and then do more and more research on your own. I was fortunate in that a large hospital in my city has such a team approach but you still should do more research on your own. In my case, the second opinion review said I was a good candidate for either surgery or radiation (seeds) but slightly said surgery would be maybe a little better.

But I called everybody I knew who had this disease and asked them in detail about their experiences and to tell me other men who they knew who had it and contacted them tool. Because of the replies I got from men who had all types of surgery I began to get cold feet about surgery. Some had good experiences with surgery but too many did not and are suffering the consequences. So, I did more research, read more books, and spent hours on the internet. There is an abundance of information but key is to separate the wheat from the chaff so to speak. Many of the sites are commercial and pitching their approach but after awhile you learn how to figure out what is accurate information and a sales pitch. Also, go to message boards like this one and many of them enable you to email or call men who have been through this. I have done that and found that very helpful and in fact am still doing it as I try to figure out what to do for me.

I have still not made a decision yet and key to know is you likely have time to figure this out and not make a rash decision that you regret later. There are no guarantees with any of this I have found in my research. You have to make your decision on what you believe is best for you. But do your homework and hopefully your husband will get more involved. I found that the more work I did that I became more empowered to help me through this.

I have ruled out surgery, freezing, HIFU, and watchful waiting after much work and many hours. So am focusing on radiation at this time and there are several options to look at in that form of treatment and many places you can get treated. Still working hard to figure it out but I again suggest you all take your time, get involved, get empowered and you will figure it out.

You have lots of options and this is not a death sentence in my opinion and can be treated and high probability of being cured and with fairly low side effects.

On thing that stands out to me is that regardless of what treatment you ultimately choose get it done by the best. If you go surgery, get the best with the most experience, same for other forms. It is without doubt that the worst outcomes I heard about were where men did not have the best doctors with the most experience doing the treatment. The books you read will give you some guidelines on what experience levels you should look for.

Good luck in your journey. Panther Fan

 
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Old 12-09-2008, 12:36 PM   #18
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Re: My husband was just diagnosed with Prostate Cancer.

His scans came back clean. What a relief that is!! His MD wants him to have an MRI though. It sounds like it is because he wants to determine the extent of the Cancer. Still no PSA or Path report. Not in the mail today They were supposed to mail it on Friday. Hopefully, he is calling to get on that.

 
Old 12-09-2008, 04:09 PM   #19
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Re: My husband was just diagnosed with Prostate Cancer.

Good to hear the scan results. There are a couple types of MRIs-- the most advanced I'm aware of is an endorectal spectroscopic MRI. It's only available in certain places but will give more accurate results. It's always possible to start with the regular MRI and if there is any question in readings that it provides, then get the other. I had both, the latter at
the Mayo Clinic in Jacksonville. Sorry to give you another thing to look up. If read properly, the MRI can help assure one that the cancer is contained in the prostate.

 
Old 12-10-2008, 08:15 AM   #20
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by Trace212 View Post
His scans came back clean. What a relief that is!! His MD wants him to have an MRI though. It sounds like it is because he wants to determine the extent of the Cancer....
Congratulations to you and your husband on that great result! Those results pretty much rule out the existence of large tumors, as I understand it. While that wasn't likely, I would say it's champagne time for both of you!

I never had either type of MRI, but I see it the way daff does: it should be an endorectal MRI if practical. The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," describes that scan on pages 57 and 58, including an image and graphic. Ideally, the scan would include sensing the spectrographic characteristics of each section of the image as well as the MRI characteristics.

As daff said, it is only available in a few places, but you are in luck: one of the most experienced sites is Memorial Sloan Kettering (MSK), probably just a few hours train ride away for your husband. (Another site with long experience, also mentioned in the Primer along with MSK, is in San Francisco.)

Here's a little of what the Primer says about this scan (endorectal MRI with spectroscopy): "... This technique is far superior to a routine pelvic MRI and is associated with a 75% to 90% accuracy rate when there is agreement (concordance) between both spectroscopy and MRI modalities of imaging...." (In other words, it achieves that high accuracy rate when the spectroscopy agrees with the MRI image.) Do you have the Primer? If not I could add more about that scan. The endorectal MRI with spectroscopy has been improving for years now, and probably the latest major improvement is a more powerful MRI, up to 3 Tesla power. Tesla is a measure of the strength of the magnetic field, and the higher the Tesla, the higher the resolution of the image. A problem for insitutions investing in this technology is that it costs about $1,000,000 per Tesla, so many sites apparently cannot justify the expense of 3 Tesla equipment. I would be surprised if Memorial Sloan Kettering did not have that capability.

Dr. Myers also discusses endo-rectal MRI in his book "Beating Prostate Cancer: Hormonal Therapy & Diet," around page 34 in my original edition. He notes its strengths in helping detect the extent of cancer within the prostate as well as penetration through the prostate capsule, but he also notes that it has difficulty distinguishing between cancer and previous bleeding from the biopsy. Dr. Myers states that regular CAT and MRI scans are widely used to detect lymph node involvement "but are completely inadequate." The problem is that it take a pretty big tumor to show up on those scans, letting a lot of the smaller but significant tumors slip through undetected. "... Studies consistently show that these techniques only identify 15-30% of known lymph node metastases...."

There's a lot of information about results using the technology on PubMed, a site we can use here because it is Government sponsored: [url]www.pubmed.gov[/url]. I got 84 hits using this search string: " endorectal MRI with spectroscopy AND prostate cancer ". Dr. Jon Kurhanewicz at the U. of California, San Francisco is one of the world's leading authorities and is listed as a co-author and senior (last) author on a number of these papers. Some of the language is hard to plow through.

I don't know whether Yale or a center near to you would also have endorectal MRI capability, or endorectal MRI with spectroscopy. If it were my own case and I lived in Connecticut, I would want MSK to do it because of their long experience, unless someone more local also could demonstrate special expertise. Your sister could probably search out those facts. It's worth checking with your husband's doctor to see what kind of MRI he has in mind. If its just a conventional MRI, you might want to check with your sister to see if she sees any added value in doing that.

The Primer describes endorectal MRI as a 50 minute procedure. I've heard from a couple guys who have had it that it is not the most fun they have ever had in life, by a long shot! They said it was hard mostly because you were conscious and were on the scanning table for a long time in not-so-comfortable circumstances. Daff, how did it go for you?

Jim

 
Old 12-10-2008, 10:26 AM   #21
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Re: My husband was just diagnosed with Prostate Cancer.

Quote:
Originally Posted by IADT3since2000 View Post
....
The Primer describes endorectal MRI as a 50 minute procedure. I've heard from a couple guys who have had it that it is not the most fun they have ever had in life, by a long shot! They said it was hard mostly because you were conscious and were on the scanning table for a long time in not-so-comfortable circumstances. Daff, how did it go for you?
Jim- I was so pleased to be able to get this advanced MRI at Mayo that I guess I never thought too much about how much comfort I would or would not have. They treated me extremely well and it really didn't bother me at all.

 
Old 12-12-2008, 02:30 PM   #22
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Re: My husband was just diagnosed with Prostate Cancer.

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.... Still no PSA or Path report. Not in the mail today...They were supposed to mail it on Friday..
Did the information on Gleason score and PSA ever get sent to you? It's important information to have to help you when you consider the treatment alternatives.

 
Old 12-13-2008, 10:19 AM   #23
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Re: My husband was just diagnosed with Prostate Cancer.

Tracie, very sorry to have to welcome your husband and you to "Our" side of the tracks. As you can see by the few replys the very best thing immediately to do is educate yourself. Surprise that Doctor with knowledge of what he is going to tell you BEFORE he tells you. Jim has a "pant-load" of information in his reply (all very good) so do not be overwhelmed. Read more than one or two publications about the prostate and what its function is (sorry to put it this way but that should be was). I was diagnosed at late 49 also and had the robot at just past 50, some birthday present huh. That was two years ago. People here and on other sites and in the books, say "find a good Dr. that you are comfortable with". I for one didn't have a clue how to find a "good" Dr. or what constitudes a "good" Dr. The only point that stuck in my head was, don't be a practice case for the surgen. So I looked to Huston, Atlanta, almost settled for Cleveland, then found out that the Dr. I was seeing was a pioneer for the "divinci" surgery in this state, Indiana. The next step after settling on the Dr. was what to do and how to do it. Let me say here that after all the reading and hours on the WEB I came to the conclusion that there is "no" treatment for prostate cancer. They treat a cancerious prostate but not the cancer itself. The treatment is removal. You will find there are four basic methods: cut it out, burn it out, freeze it out or starve it out. Research all of them, you have time. Good luck

 
Old 12-14-2008, 04:24 AM   #24
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Re: My husband was just diagnosed with Prostate Cancer.

Hi Trace212,
I'm so sorry that you and your husband are having to go thru this. My husband had a PSA of 4.6 from one year to the next. His biopsy had 3 of the 8 taken showing cancer cells. I know that this is a difficult time for both of you but this site is so helpful. I wish that we would have had the internet in Aug. of this year. My husband had an awesome Dr. to take care of him. He's one of the top ones in this area. Dr. Carson Wong--Oklahoma City, OK. We chose the Robotic Surgery--We didn't want to have to deal with always wondering if it was still there. My husband is 60 and there are still too many yrs. to live together (with God's Love and Help). You're doing the right thing by checking everything out--the options are many. I just pray that you find the best Dr. for whatever you decide. Our Dr. is so pleased with my husbands progress. I will be praying for both of you. God Bless You and Yours Today and EveryDay precious49

 
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