HealingWell
Search Close Search
☰

Choosing Dr/Hospital??

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/11/2015 6:23 AM (GMT 0)

Dewayne said...

Island time,

What about Duke, Vanderbilt or Atlanta? Living in Knoxville puts you in range for those centers. Man, I'd be considering brachytherapy. I'm 4 weeks out and just had sex with the wife. I have some SE's (no ejaculate at the moment) and some urgency in urinating; but otherwise back to normal.

Dewayne, whadda ya think I am? Some kinda a nut?? Seriously, I'm thinking if JH tells me that Vanderbilt is just as good, that may very well be where I will go. Mike Smith has 3000 of these puppies on his resume. JH should be able to tell me that over the telephone without my having to go up there.

Scared of brachy . Tempting as it is, I gotta know. And that means surgery.

Thanks for the other suggestions as well.
Posted 1/11/2015 6:29 AM (GMT 0)

Tall Allen said...
Nope, no difference. You still qualify for Active Surveillance and classes in Mindfulness Based Stress Reduction. :-)

- Allen

Just Googled MBSR. As it happens, there's a class beginning Jan. 19 just 7 minutes from my house. Meets on Monday nights, $240 bucks. I'm gonna swing by...small price for a calmer mind. :)

Thanks Allen
Posted 1/11/2015 1:04 PM (GMT 0)
island: fyi, just the other day, I talked to a guy who is a retired co-worker who had RALP from Dr. Smith at Vanderbilt 2 years ago last week. He looks good, says "everything is working as it's supposed to", and gave me the encouragement I needed to hear and welcomed me to "the club". My feeling is this: The great practitioners aren't only located at JH and Mayo. For relatively uncomplicated situations, the important thing is to find someone who has done a lot of them with good results.

Hang in there dude. We'll all come out on the other side.
Posted 1/11/2015 2:19 PM (GMT 0)
Scared of brachy

I just don't get that!
Posted 1/11/2015 4:10 PM (GMT 0)

island time said...
I gotta know. And that means surgery. .

David, there IS a similarity to your journey and that our our friend Prato. Prato also arrived here hell bent on surgery. HOWEVER, he took the time to do his due diligence by investigating other options before he pulled the trigger. You may ultimately decide that surgery is right for you. However, please do yourself a favor and make sure you have educated yourself by speaking with excellent doctors in other fields before you make a final decision. You get one chance to do this right the first time so please take the time to make sure you have all of the appropriate information.

Jim
Posted 1/11/2015 5:46 PM (GMT 0)
Gop,Tudpock...

I have an appointment with a radiology oncologist on Tuesday, Jan. 13 @ 9 AM. I will be sure to bring up brachy and give it more due diligence during that visit.

A couple of mitigating factors I want to discuss is...

1) I have had urinary flow problems on and off for years, but in mid September '14 it progressed to the point of keeping me up most every night. (Flow max fixed this)

I know that radiation causes, or can intensity this preexisting condition.

2) Goin pain also began around thus same time and continues to this day. No one has been able to definitively diagnose the cause of this pain.

3) Personality. My life's motto has always been..."Denial can be a beautiful thing". Problem is...knowing that about myself scares me into wondering if brachy may be just "more of the same?" And I cannot afford denial with cancer.

4) I like the fact that an operation will give me the skinny on the facts, more so than with any other form of treatment. Seminal vestical and margin involvement will be immediate information provided only by surgery. I'm not built to be able to wait long for important information of this magnitude.

I realize I have low gleason and volume. 3 of 12 cores. So I do have time. But...As the one of the deputies in the movie "Unforgiven" answered when asked why he was taking 2 guns to fight English Bob when he only had one hand...His reply was..."I just don't wanna git shot for lack a shootin' back"

End a the day..i don't know what to do. Putting one foot in front of the other. And i need all the help I can get...including you guys.
Posted 1/11/2015 5:55 PM (GMT 0)
Also...anecdotally speaking, but on my mind even though I know it's useless information and not something to be used to base a sound and reasonable decision on...

My next door neighbor had brachy. Sometime later he developed colon cancer at that spot. His colon docs told him the radiation was overkill for his cancer and caused his Colon cancer. He's fine just has to wear a bag.

This was done around 10 years ago and hes 20 years older than me and I know absolutely nothing else about his case. But that's not an easy one to ignore all the same.

He also had it done @ a down right $h!Tty hospital.

Post Edited (island time) : 1/11/2015 11:06:20 AM (GMT-7)

Posted 1/11/2015 7:13 PM (GMT 0)
Island, Tud is right. It's good that you are speaking with a RO. Go into it with an open mind. I did the best I could to do that, it's not easy. For me, it came down to , like you, needing to know"

You'll probably do surgery, I know your mindset. But Speaking to an RO will give you the confidence that you've made the right decision after learning about other options.

Good luck. Feel free to email me if ever you think it would be helpful to talk
Posted 1/11/2015 7:17 PM (GMT 0)
oh great! That's just the kind of story someone who is about to
choose Brachy as treatment wants to hear. I'm not crazy and unsure enough??

hey I know there are no guarantees in life plus your story about this guy was 10
years ago.heck I'm going to probably go with a guy who has done about a hundred hdr brachy procedures.
,
My numbers are fairly close to yours as well, yet the
Have to know or have to have it removed chacteristic is not part of my psychological makeup. THE lack of ongoing SEs are a bigger mind game for me.
Posted 1/11/2015 9:26 PM (GMT 0)
@David. Glad you are getting other opinions as that is just good sense. I'm not trying to talk you into a specific treatment; heck, if it was me with your stats I would be on AS in a heartbeat. But my personality type feared the SE's more than the need for immediate info/gratification...each of us is different in that respect.
Re your urinary symptoms, you are correct that LDR brachy may worsen those. In fact, most RO's will administer an AUA Urinary Score test to determine suitability of various types of radiation. I understand that HDR Brachy may not be as problematic as LDR Brachy in this respect.

@Ben...don't fret over anecdotal stories one way or another. Look at the stats, the big picture and the trifecta. Those are the things that likely matter.

Jim
Posted 1/11/2015 10:26 PM (GMT 0)
@Sam. Sam, Jim beat me to the punch. Wasnt meant to scare. There are no risk free solutions. The day we're dx'd is the day we are all saddled with risks we never saw coming (however small) including every form of treatment. Knowing this...i am still not off of brachy therapy myself.


@Jim. Thanks for the heads up on the differences between LDR vs HDR side effects. This goes on my questions to ask list Tuesday.

David

Post Edited (island time) : 1/11/2015 3:34:23 PM (GMT-7)

Posted 1/11/2015 11:15 PM (GMT 0)
@ Jim. Technically...I'm on AS now. (Next psa in 4-6 weeks. I'm just wanting to be ready to pull the trigger when or if the time comes. (But you know my personality! !!)

:)
Posted 1/12/2015 3:08 AM (GMT 0)
Hi Island Time,

You have some good advice here. There is one more factor to consider: Do you have a family history of Prostate Cancer??

I was bilateral G6(3+3) before and after RALP 24 days ago. Many would say that I would be a good candidate for Active Surveillance. However, I have one brother, my father, my grandfather, my great uncles and several cousins with PC. And further, my Dad and Grandfather were diagnosed at age 55 and passed at age 64 and 62 respectivly. My great uncles and cousins passes away young also.

My Dad presented as T4 and a PSA of 20. I do not know his Gleason scores. He had the best possible treatment at UCSF Med School and Stanford. He did hormone therapy and external beam radiation. He lived with PC from 1990 to 1999. In his last 6-8 months he did not have a good quality of life. I wanted to minimize the odds that I would follow that path.

Despite my good pathology, due to my strong family history of early onset and aggressive PC, Active Surveillance was not a choice for me. My rationale for choosing RALP was:
* Do not want to wait 2 years to see PSA drop to <0.1
* Did not want to risk my biopsy missing PC with Gleason score >6
* RT has as the goal to kill all the PC cells + all the prostate cells that could turn cancerous in the future and yet not affect the urethra that passes through the now (hopefully) dead prostate. This is a tall order!
* Further, PC is multi-focal, there are almost always more than 1 or 2 tumors. RT has to get them all to be a cure
* The possible side effects of radiation therapy include damage/irritation of the bowels. I have enough trouble with IBS/Spastic colon that I do not want to aggravate.
* Dr. Walsh, in his book gives the stats on the percentage of cancers near the urethra, which is a significanty high number for me.
* I am young (55) and in good health in general, would tolerate surgery well.
* RALP can, if the cancer is capsule contained, be a high probability cure if you have positive margins

RALP has the possibility of some serious side effects such as urinary incontinence and impotence. I fully accepted those risks and worked to minimize them by carefully choosing a surgeon.

We are all different, we all have differences in our lives, we have different values.

You own your decision. Read everything you can find that is scientifically sound. Read on the web. Watch some RALP surgeries on youtube (there are a bunch).

We at HW are always here and personally I pray for all the guys here a lot.

With Best Regards, scientificlifestyle

--------------------------------------------------------------------------------------------------
Strong Family History of PC
Younger brother: PC at age 45 T2, PSA=2.95, + DRE > open Prost, doing fine now
Father: PC T4, age 55, PSA=20, Met to Lymph Nodes and Bones, Hormone, Rad, passed at age 64
GrandFather, Great Uncles all died of PC at age 62-64
Me: Year of Birth 1959
Diagnosed Oct 2014, Negative DRE, PSA=1, no symptoms, T1c
Biopsy shows 4 of 14 cores(with fragmentation) Adenacarcinoma 5mm, 2mm, 1mm max all G6(3+3)
Preemptive Biopsy due to Family History and age=55

Scheduled RALP 18 Dec with Dr. A. Martinez


Post surgery Pathology:
One positive margin, but additional tissue taken with no cancer in that area.
PNI inside capsule, no extra capsule cancer found
5% of post surgical prostate examined has G6 (3+3), No Upgrading!! Post surgery T2c
Stress and a bit of urgency UI, but only 1-2 spirts and the rest just drops. Almost completely dry at Surgery +24 days.
Willy works - partial erection yesterday with daily 20mg Viagra, those nerves are still there and working even this early!
Posted 1/12/2015 3:12 AM (GMT 0)
Dooh.... RALP can me a high probability cure if you have ****Negative**** Margins
Posted 1/12/2015 3:44 AM (GMT 0)
Scientific. ..

Thanks for the thoughtful response. The answer is no family history. But...then again...dad died at 64 with no autopsy performed. I was just texting my sister on this very topic. I do not want "life altering" surgery (or non life altering for that matter) "voluntarily". But then again...I'd just as soon not die either.

Dr Walsh says 50% of AS candidates don't quality anymore in 2-3 yrs time. Sounds high..but..doesn't mean that would be me and doesn't mean I'd really be any worse off iif it was. Epstien even says that waiting 6 mos to a yr with low grade disease does not affect outcomes.

This is...without a doubt...One crazy disease.
Posted 1/12/2015 3:51 AM (GMT 0)
Okay.....I'm not one of "the guys", I'm one of the Lady Warriors and when husband was diagnosed in 1999, he was absolutely devastated. We did not have as much information available as there is now. So much more on-line and with so many blogs and all of the news from so many cancer web sites, you can get overwhelmed and have a brain freeze.

First off, we did read Dr. Walsh's book and if you see the signature, husband had a Gleason score of 7 with a PSA of 10 when surgery was scheduled. Yes we did (we thought at the time) went to JH and had a surgeon from Dr. Walsh's group preform the surgery. At that time is was the nerve sparing procedure and not many surgeons were doing that and husband was concerned with the negative outcomes if surgeon was not skilled enough doing that surgery, therefore our reason for JH. Also, we did not know if the cancer had escaped the prostate area and if he had radiation first, we were told that surgery could not be preformed at a later time. Had a second opinion and it also confirmed our thinking, to have surgery first, 2nd, if necessary radiation and then conclude with hormone therapy. That was 15 years ago, and many trials and tribulations later he is still a survivor. He is incontinent and impotent, the incontinence is a major issue with him. He is now Advanced Metastatic Prostate Cancer Stage IV.

With all of this said, you will have to make up your own mind, but do get as many opinions as possible. I am not an advocate of Vanderbilt Hospital and their medical oncologist's but The Department of Urology at Vanderbilt has been excellent when husband has had urological problems. His doctor is Joseph Smith, his credentials and reputation are stellar. He will sit down with you and discuss your concerns and weigh the pro's and con's and have you make your decision based on all of the available information and medical condition.

Wishing you the best and so sorry that you are on this forum, but these guys who post here are "top notch" with the most up to date information and support that you will find anywhere. But like they said, stop and take a breath, your life is not over.

Peace, Love and Hope to all

sal
Posted 1/12/2015 4:18 AM (GMT 0)
Hey! Hope AND easy does it.

Thanks for a shot in the arm of both sal.

I think i can actually sleep easy tonight now!!!

:)
David.
Posted 1/12/2015 4:42 AM (GMT 0)
With all due respect I think you are only "sort of" on AS. You're in a waiting period and trying to figure out what you should do--which is EXACTLY what you should be doing as a G6. But there is a regimen to AS, so please don't think it's the same thing as doing nothing. The key word is "active."

And please recognize, I know you're NOT doing nothing right now. I hope this doesn't come across that way. You are working toward driving to a resolution.
Posted 1/12/2015 1:41 PM (GMT 0)
island time, you wrote: "My next door neighbor had brachy. Sometime later he developed colon cancer at that spot. His colon docs told him the radiation was overkill for his cancer and caused his Colon cancer. He's fine just has to wear a bag.

This was done around 10 years ago and he's 20 years older than me and I know absolutely nothing else about his case. But that's not an easy one to ignore all the same.

He also had it done @ a down right $h!Tty hospital."

Lots of discussion over time regarding radiation causing secondary cancers, and from my research there's not enough there to support that. For example from The Journal of Clinical Oncology: "Overall, we found no difference in SPC incidence between patients with prostate cancer treated with prostatectomy or brachytherapy. Furthermore, no increased tumor incidence was found compared with the general population."

My bigger takeaway from your post was "10 years ago" and "He also had it done @ a down right $h!Tty hospital." BT and most of the treatment modalities available today have as expected evolved in a positive manner in terms of success and SE's - but most importantly, again, it's as much about the archer as it is the arrow. . . . . . .
Posted 1/13/2015 1:39 PM (GMT 0)
"Denial can be a beautiful thing". Problem is...knowing that about myself scares me into wondering if brachy may be just "more of the same?" And I cannot afford denial with cancer.

I chose brachy because I learned that it gave me at least as good a chance of beating the disease with a much less chance of life altering side effects. That was nearly five years ago. Currently, my doctor uses the word 'cure' when referring to the pc that I had. I have a wonderful sex life with my beautiful girlfriend, and I have no continence issues. My treatment was a one day affair which caused me to miss one day of work ( I just missed two with the darned flu), and one week at the gym. If this is denial, then I am all for it.
✚ New Topic ✚ Reply
12