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Posted 8/25/2012 12:41 PM (GMT 0)
Bluebird,
I can't add much that the others haven't already covered. Let me just reiterate that the good news is that your husband will most likely die from something other than PC whatever method of treatment he chooses. Once I realized that, I focused more on the possible side effects. It is for that reason that I chose brachy. I couldn't be happier. Do yourselves a favor, and at least talk to a good oncologist. I'm sure your surgeons are great, but remember they are surgeons...of course they will play that option up. And Walsh is a surgeon as well. Perhaps you should read other books like Surviving Prostate Cancer without Surgery by Bradley Hennenfent. Best of all, go to a cancer clinic that offers multiple treatments and try to get some objective opinions.
Best of luck whatever you choose.
Posted 8/25/2012 1:46 PM (GMT 0)
Bluebird-

I am on this forum because my neighbor was just diagnosed with prostrate cancer but in addition my husband was diagnosed in 2001. I am going to give you in summary how our journey went and although things (robotic surgery) have changed since then it might help you in your decision.

My husband was 45 when diagnosed. His PSA had risen from 9 to 14 in a year but after 2 biopsys they couldn't find any cancer cells. My husband wanted surgery anyway since his PSA continued to rise. The doctor did one final biopsy and found the cancer. I don't really recall any of the scores or how many cores they found it in. ( I think his gleason was 6).

We both decided on surgery immediately mostly because of his age. The surgery was done within a month of diagnosis by his doctor. It was not done by robot but by the surgeon himself. I was told that if when they got in there and the cancer had spread outside to the lymph nodes they would close him up and have to do radiation instead. Luckily for us it had not spread and the surgery was done. This was in 2001.

He had 6 week recovery time. After recovery he had no after effects at all and I mean none...

Forward to 2008...his PSA started to rise a tiny bit and my husband of course started freaking out as was I . He went for several opinions and to see an excellent radiologist. Before starting radiology he had a prostanctint (sp) scan done. It was not a bone scan but a scan of your entire body to look for hot spots (cancer cells). They found a tiny cell in the prostrate bed and the decision was made to have a course of radiology.

He now has an undetectable PSA and the doctors feel he is cured and that there are no other cells floating around in his body. Of course nothing is certain but we feel good about the chances.

I am not sure any of this helps you as it has been a long time since we went through all this but we are totally 100 percent certain we made the correct decision to do the surgery.

We are now helping our neighbor through his decision making although he has different circumstances.

I know others have said to wait a few months but we did find that my husband had a very agressive cancer which we didn't know until the pathology report came back. So for us to do the surgery immediately was the correct choice.

I still recall the emotions and fear that went along with this entire process. You can PM me if you would like....I hope I helped you some.

Kim

Posted 8/25/2012 3:32 PM (GMT 0)
Bluebird, it sounds like your husband is rushing headlong toward surgery and perhaps any of our added comments on ohter options don't matter.  Nevertheless, I will weigh in again based on the added info on this thread.  First of all, surgery likely WILL cure his cancer but also WILL likely yield some more onerous side effects than if he chooses another option.  He can rationalize this away all he wants and get all of the anecdotal evidence he wants but the statistics in these matters do not lie so he needs to hope for the best but be prepared for the worst.

Secondly, this business about choosing surgery so that radiation is a back up plan is bogus thinking in my opinion.  If there is cancer left in the prostate bed that surgery missed but radiation must then clean up then it stands to reason that radiation probably would have gotten it the first time.  Also, while it is true that surgery after radiation is difficult as a salvage option there are several different salvage options for failed radiation that are every bit as good as radiation after failed surgery.  Don't get fooled by this line of faulty logic.

Finally, if brachytherapy is really an option you want to consider I would suggest going a an experienced brachytherapy center so that you can get a full picture.  Once again, I would point you to Yooper's recent threads where he was "told" that brachy was not a good option but then discovered it indeed was after he consulted with a brachytherapy expert.

Sorry if this comes across as blunt, but I assume you are here because you don't want fluff.

Good luck.

Jim

Posted 8/25/2012 3:56 PM (GMT 0)
Nice post and thread. I suggested to my spouse to read as a starter. I think she has been reluctant to dive in, as I am the researcher type.

Surgeon told us Thismweek that most do his patients my age are continent, just wear one pad a day... So a variable definition of continence!
Posted 8/25/2012 6:50 PM (GMT 0)
Rider 800,

Welcome to our forum and sorry you are here. Actually most guys like me who have had a RALP regain full continence with in  weeks, months or even a year of surgery. I was 61 last year and was 100% dry (no pads) 4 weeks after my surgery and still am a year later.

My suggestion is that as a new member you start a new thread for just you and let all of the knowledgeable guys and gals here offer help and opinions based on all of our knowledge and experience about fighting and beating this beast we call prostate Cancer.

I see that you live in Connecticut which I think is close to Rochester NY. We will be having a gathering there the last weekend of September with over 30 of the guys and gals in this forum. It is both a lot of fun a a great  way to meet in person members who have been where you are right now. We call this gathering GFMPH and if you want more information send me an email with your contact information. I keep my email link open and you can get it by linking on the email button just above my join date to the right.

Terry The Water Guy

Posted 8/25/2012 8:39 PM (GMT 0)
 There is constant talk here about ED following RP, but what are the stats on ED following Brachy?  I'm reffering to year 5 or so?  Not intersted in anecdotal evidence, but stats.

Thanks!

Posted 8/25/2012 11:01 PM (GMT 0)
Walkby, I recognize that you are relatively new but the stats and studies on the various procedures have been posted on HW many times.  For brachy, the long term ED percentage is approximately 35% vs. about 50% for RP.  Of course there are differences according to age, experience of doctor. luck of the draw, etc. but this is what the studies show.  BTW, re brachy, their is very little ED immediately after the procedure but it may come on over time...usually flattening out at 35% after two years.

Hope this is helpful.

Jim

P.S.  If I was only sharing anecdotal data, the ED percentage would be zero!

Posted 8/26/2012 2:49 AM (GMT 0)
Bluebird,

Sent you an email. Good luck!
Posted 8/26/2012 4:10 AM (GMT 0)
Tudpuck,

My question wasn't rhetorical. I've honestly have not seen the brachy ED stats. I figured they'd be lower.

Thanks for sharing.

Post Edited (walkbyfaith) : 8/25/2012 10:33:57 PM (GMT-6)

Posted 8/26/2012 1:38 PM (GMT 0)
Good Morning all.  Jim, first off thanks for the kind words re the way I went about my research towards a decision for treatment - like I've said, I can't imagine making this HUGE of a decision without doing it that way.

Bluebird, having said that I would again urge you to get your hubby to slow down and do the research.  Once again regarding statistics - keep in mind that published statistics need to be considered for what they are i.e. when was the study completed / what are the data set for the study / etc., etc.  I've got a commitment so I've got to log off for now but will be back later today; I will try to put together some links that I used as part of my research and ultimate decision to go with LDR Brachytherapy Monotherapy - keep in mind that I have not yet had this treatment so I don't have my own results yet - but hopefully I can provide some resources to you guys to help.

I'll be back . . . .

Posted 8/28/2012 2:42 PM (GMT 0)
Hi Bluebird - sorry I've taken a couple of days to finally get back to your thread; I'm currently out of town but have some time and I promised to get back to you.

While I don't have all of my resources with me on this trip, I thought that the one single best thing I could provide you and your hubby - and anyone else that is interested out here - would be a copy of what is probably the most current/comprehensive study on survival rates for the various PCa treatments. I purchased the "Grimm et al" or "Results from the January 2012 Prostate Cancer Results Study Group" full report online and would be happy to send a copy to you. My e-mail link is available here at HW. I will be online intermittently for the next couple of days but I will check my e-mails and here as well.

I hope you guys are still reviewing all of your options. . . .

I am going to post my offer to share this study out on my current/active thread as well.

Best to everyone.
Posted 8/28/2012 4:57 PM (GMT 0)
Thanks Yooper. I sent you an email.
Posted 8/28/2012 6:16 PM (GMT 0)
You may want to see an experienced Brachy doctor. I went to see a radiologist at the Mayo, which uses IGRT to treat PCa, and he referred me to a doctor who specializes in Brachy.
Posted 8/28/2012 7:03 PM (GMT 0)
My husband and I saw Dr. Dattatreyudu Nori, chief of radiation oncology at New York Presbyterian last week. He was previously chief of Brachytherapy Service at MSK. He said that my husband can have IMRT or IMRT with brachy, but not brachy alone, because he has too much volume of cancer. He recommended IMRT by itself. He seemed like a smart guy - he has extensive experience. We are scheduled to meet with two other radiation oncologists at facilities that offer external radiation as well as brachy, one locally and one at MSK.

Post Edited (bluebird123) : 8/28/2012 7:35:29 PM (GMT-6)

Posted 8/28/2012 7:28 PM (GMT 0)
Sounds like you are doing all the right things. Good luck to you.
Posted 8/28/2012 11:26 PM (GMT 0)
Hi Bluebird - quick question re your last post / comment: "He said that my husband can have IMRT but not brachy, because he has too much volume of cancer." Would you mind sharing the details of each Gleason finding, in terms of % found?

I have additional thoughts pending those details.

Also I am headed off to my e-mail to respond to you and the others with a copy of the Grimm et al report.
Posted 8/29/2012 12:19 AM (GMT 0)
6 cores G6: 35%, 20%, 50%, 70%, 5%, 20%
1 core G7 (3+4): 20%
1 core PIN

Thank you Yooper
Posted 8/30/2012 9:05 AM (GMT 0)
Hi Bluebird ~ It looks like you have gotten a good response to your thread.  You have been a terrific reseracher and it seems you are on the way to finding the best methods of treatment for your husband's PCa.  I hope your journey will be very successful and wait for your news regarding treatment.

Much blessings,

Aimzee

Posted 9/2/2012 1:55 PM (GMT 0)
Hi bluebird - haven't heard from you guys in awhile and thought I would check in.  How is the research going?
Posted 9/2/2012 2:34 PM (GMT 0)
Bluebird,

Let me be among the last to welcome you to HealingWell. As you've already discovered, this is a great place for information and support. The people here are wonderful.

I have little to add to what's already been said. It sounds like you have some terrific doctors lined up, but that never makes the treatment decision any easier. However, I'm sure everything will go well whatever you choose.

I think choosing between a surgeon who has done 3,000 surgeries vs. one who has done 1,000 is a coin toss. If it was 3,000 vs. 30, the choice would be obvious. However, my doc told me the learning curve pretty much flattens out after about 250 surgeries. It sounds like you have two very competent surgeons. I'd pick the one who communicates best with you.

I'm glad you're looking into IMRT and brachytherapy. If I had it to do over again, I would have given these options more serious consideration. It's good that you're taking your time and thinking it through.

Best to you and your husband as you go through this process. It sounds like you're in the hands of some extremely competent medical professionals, and chances are your husband will have an excellent outcome. Please stay in touch with us and ask any questions that may come up. I never cease to be amazed at how helpful and well-informed so many people here are.

Jonathan
Posted 9/6/2012 8:43 AM (GMT 0)
I'm new, just found this support center. To start off, I am a 45 yr old Navy Vet. My PSA's had been 1.2-1.5 for the last couple of years. In January, they jumped to 5.8. My Urologist recommended RP without even doing the biopsy. Biopsy came back 1 of 12 at 5% positive with a Gleason of 7. I have elected to stay away from this urologist. While he has a good reputation, many vets I have spoke to in our area all have said the same thing: don't let him cut on you, you're too young and they will come up with some other cure withing the next ten yrs. Most of these guys also said their incontinence lasted for more than a year afterward, and all have severe ED problems.

I start my LDR in Tulsa next week. I see a lot of positive feedback for the surgery here, but the individuals I have spoke to, all (100%) have told me to stay away from the knife. Robot or Dr. they said didn't matter. Once they take it out, they can't put another one back in.
Posted 9/6/2012 1:23 PM (GMT 0)
Hello Bluebird,

i don't understand why brachytherapy isn't good for any Pca contained within the gland no matter the number of positive cores. The radiation cloud envelopes the entire gland and beyond. If it will kill Pca in one part of the gland it will kill it in the entire gland.

Robert
Posted 9/6/2012 3:59 PM (GMT 0)
Robert,

You ask a good question. I asked MD Anderson to evaluate me for seeds back in 2009, and got the same response - they would not do seeds for me. They did not give a technical explanation, just that the results would be much less than desired, and that I was a better candidate for surgery or RT.

They also considered me for Proton RT, but that was refused by my insurance (I could have paid the difference between Proton & IGRT plus the travel costs out of pocket, but it was prohibitive).

 

Posted 9/6/2012 6:42 PM (GMT 0)
142, what were your intial stats when you reviewed brachytherapy?  Like surgery, brachy works best with organ confined disease.  If you were a G7 or higher with multiple cores or high % in cores there is a higher chance that the cancer has spread beyond the organ, therefore suggesting brachy + IMRT or IMRT alone...

I was a G7 with low number of cores and low % and was "on the border" for a suggestion of adding IMRT. 

Jim

Posted 9/6/2012 6:57 PM (GMT 0)
Robert,

My husband and I met with our second radiation oncologist early this week, Dr. Zimberg. He said that my husband was not a candidate for brachy because of the volume of cancer. We didn't question him as to the reason why not because if my husband does radiation, we would go along with what was recommended to us. My husband's goal would be to iradicate the cancer, not to have a specific type of radiation. Dr. Zimberg recommended IGRT with VMAT. IGRT is where they place gold markers in the prostate and then use them to determine where to radiate. Dr. Zimberg said that IGRT with VMAT has less side effects than brachy. He said that with brachy the seeds are in the prostate 24/7 but with IGRT and VMAT the prostate is only radiated for a very short time (less than a minute) 5 days a week for 8 weeks. Dr. Nori, the radiation oncologist we saw at New York Presbyterian had recommended IMRT or IMRT with brachy, but said that he would get the best results with IMRT alone. Dr. Zimberg said that IGRT and VMAT is newer and better than IMRT.

Most of the surgeons that we saw told my husband not to do brachy. One of the surgeons did offer an explanation. He said that when seeds are planted in the prostate, there could be areas where the radiation does not get to the cancer, so it is better suited to a localized area of cancer. 

Yooper forwarded the 2012 Grimm study to me which compared brachy, EBRT and surgery. This study shows brachy as having the best survival rates for low and intermediate risk patients.

My husband and I are speaking to radiation oncologists to compare surgery and radiation, and have not been too focused on the type of radiation that was recommended. Because my husband has pretty much decided to do surgery these visits were mostly to make sure that he had given radiation fair consideration. We have one more consultation set up with a radiation oncologist at MSK in early October, the earliest appointment we could get there. If we keep it, I will ask the doctor why they don't recommend brachy for a large volume of cancer (if that is his recommendation) and report what he says.

Post Edited (bluebird123) : 9/6/2012 11:19:58 PM (GMT-6)

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