New surgery date set

That's one good thing about living in a lesser populated area, doesn't take long to get appointments for anything.  I will be having my 5th corrective surgery a week from today, next Tuesday at 1000.  Expected to take 30-45 minutes.  The surgeon wants to finish what was not possible yesterday during an in-office procedure.  He wants to do another hard dialation.  Yesterday's was aborted due to extreme pain, despite being heavily sedated.  Once I can be re-opened (bladder neck), he wants it to heal a few days, with a fresh SP catheter in place (#13).  Then he wants to test the opening, by bypassing the catheter and seeing how I urinate on my own.  After a reasonable test period, several days, if all goes well, the SP catheter can be removed and I will free again on my own.

I'm waiting to hear back from Guinness World Records...I think they might want to hear your story

I'm hoping for the best for ya - you've been through plenty. Is there any use in having an artifical neck implanted?

David:

 

Yet nowhere in your informative post do you even mention seeking other opinions. I know you say you've done some research and the situation is not uncommon. But YOUR situation certainly is.

I still say: what can it hurt to write a long letter detailing your journey and sending it to a few of the centers of excellence?

I am probably getting overbearing in my posts to you, so I'll try not to bug you with the same suggestion again and again.

I am also totally sick of this darn disease ruling my life and I haven't gone through 1% of what you have.

Good luck with the surgery. Hopefully, this time will be the charm.

 

Mel

Until they run out of "less risky" options, I would do the same as you have decided. Only then would I go for experimental or high risk options. These higher risk techniques might work but so might the low risk. Keep your spirits high, peeing on demand is important but you have much more going for you (one being the incredible service and example you have provided us).

Just one of your many friends here,
Jake

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Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy

I hope you do well , myself I would have fired this doc long ago and went elsewhere, he is beyond the 3-strikes and your out rule in my book. So who's on first? What's on second?
Maybe this time the home run or you might steal the bases or you could walk... Cheap analogies..forget those...good luck to you and you are overdue for luck so hope it rolls your way.

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Youth is wasted on the Young-(W.C. Fields)

David:

You are getting some rather blunt advice on this and your other thread.  I must say that I think James said it rather well:

David, were it me, at this point, I would be looking for the nations best specialists of this condition (abnormal scarring and tissue growth of bladder necks) anywhere in the country and trying to get a second opinion and alternate exam and diagnosis. The fact that you have such an abnormal growth problem is one that would tell me that even the best generalist may not be effective in treating your individual condition. Not saying your doctor is less than great, but there's a reason doctors do specialize and you have the best case diagnosis for needing a specialist now as anyone I have heard of. Sorry if you disagree, but I think it is important that you look for specialists now, before committing to a course of further surgery, redoing the bladder neck or stents or permanent incontinece..

David: I have been reading and re-reading. I have been thinking of how to post on this topic and can not figure out how to work exactly what I want to say without being to blunt. First you know that I am your friend and I think everyone of us on HW feels a very close connection to you. What I am hearing from them in the post is the furstration and trying to figure a way to get you some help.

As for myself I can not tell you what to do and would never put myself on that level with you but I can tell you what I would do. I think there are some valid points made by many here. I would try to find the best in the nation. Would that make a difference "I have no idea". You wife is in the medical field and you are very knowledgable. I know you are so very frustrated amd worried, know that we are with you and care more than you can even imagine.

Take care my friend

You Cajun Friend
Jeff T

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David nobody knows your condition better than you do but i agree with Tudpock and the rest, but its your decision, i hope it turns out better than the other attempts
Good luck!!!!!!!!!!!!!!!!!!!
Deerhunter

Purgatory, I don't know your whole story but I'm praying for relief and a healthy end to your troubles.
Regards, Jeff

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Gleason, 3+4; PSA, 7.9
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
pT2c, prostate 60.2g, margins: negative; perineural invasion: present; lymphatic invasion: present; 3 lymph nodes removed, clear; seminal vesicle invasion: absent; Gleason 4 comprises 5-10% of carcinoma
PSA consistently <0.1 since surgery until Oct 09, 0.1; retested Oct 09, <0.1,
Jan 10, 0.2
retest Feb 1 confirmed 0.2

Steve, if you think we could make any money off of it, by all means contact them for me, I will split 50/50 with you

Ohio State - no comment

Mel - I don't post every detail of my PC journey online at HW, might seem that way, but no one but myself, my wife and family, and my medical team, knows what has been discussed or talked about as possible alternative options. I am not blindly being led around by my doctors as some here seem to be hinting at. With me being out of work full time, we have limited resources to what I can and can't do, and I do have a practical side, almost pragmatic attitude about the whole thing.

zufus - if i felt unsafe with this doctor, would have ditched him long ago, he has an outstanding reputation and record in my local area, and he has put a lot of thought into these different procedures, he has also been stuck dealing with this probelm again after the radiation obviously did a negative number in that area. He could have easily passed me off to someone else, but he's sticking with it, trying to solve the problem both short term and long term. i have ditched dr's over the years, not afraid to do so again. thanks for your concern

tud, i did find your comment a bit harsh, but like most things in life, one has to be in the complete picture to know the complete situation, and i respect your opinion, i know you do care and i appreciate that

jeff, my cajun friend, i know your heart is in a good place, always appreciate your sincere concern

thank you deer hunter and jeff above.

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

David,
I will nor offer an advice but I will offer a prayer for a successful surgery and a complete recovery. May this be the last catheter in your life. Good luck brother.

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Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004

David, all I can say is hang in there.

Thank you, Brother Ed, and 142 both. 142, how about giving us a name sometime, don't like thinking of you as just a number

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

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David,

Thanks for the input, Carlos, sorry you had to go through some of this too, glad it working for you so far. With some men, a stricture can be a one time episode, and with others, it can be chronic and ongoing. The second group is in the minority for sure.

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

hey david good luck with the next surgery. whatever you decide im with you all the way, your friend neil by the way i cook breakfast all the time that was her first in months.

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50 years

Neil, thanks. I know you went through a period of what I am dealing with, so I know you know the feeling. Appreciate your concern, one day, this has to be solved, but boy, time just keeps marching by. Next Monday, it will be 5 full months that I have been on these SP catheters.

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

David,

I'm confused over the recommendation about consulting with Strum, et al. - aren't they prostate cancer experts? Seems to me that David's problem is not about prostate cancer but about the effects its treatment has had on his body.

David, I know that you are the smart one in not responding to a particular post. I, on the other hand, are not nearly as smart as you.

Ohio, I know your intentions are good and that you are trying to get David to see another point of view. However, your comment re "I will miss you actually because you have served a purpose here in showing what not to do" is not the way to do it. Also, what good would Strum, et al do for David - aren't they experts in the treatment of PCa? I'm curious what you think they would be able to do for him since his problem right now is not the disease but the after effects of its treatments. Regardless, I believe that you're posting with good intentions, albeit rather harsh.

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Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!

Hi David,

My own experience says that it is possible to find good surgical talent in a lesser populated area. I went into dealing with this disease rather late and with some potentially serious problems. My outcome has been good and I firmly believe it was because of the skill and patience of my surgeon and his team.

With that thought I support your decision to remain with your current medical team. There is nothing that can beat your own gut feeling about the treatment you are receiving.

Wishing you the best,
Bob

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Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Five PSA tests undetectable, latest Feb 5 (Whew!)

Sephie, you are so clever, love you for that.

My hang up right now has nothing to do with cancer. The best cancer dr. on the planet would be useless. My issue is one that falls into the hands of a good urologist or a urologist with certain specialties dealing with advanced and chronic striture issues. Most strictures occur in the urethetra, and there is a number of standard procedures and cures. Mine is at the bladder neck junction. A very delicate surgery was done there on me in Oct/2008 with my open surgery. Most of been done well, I virtually had no incontinence, very minimal. But have had this scarring issue from the beginning. My uro/surgeon has been walking a tight rope ever since. He knows how to keep it open, but there is a risk if too much is done, I could be left with perm. and major incontinence. So he is careful in his procedures. What is a shame is how fast I can scar close. This last time, barely a month. He said that would normally occur over a period of 6 months to a year. Then after I had all the trouble with radiation, it further damaged an already delicate area. The radiation people got to walk away from the problem, as the radiation was finished, and I get turned back to my urologist, who's handy work inside me has now been blurred and messed up by the radiation.

As far as Ohio State goes, thanks for your remark to him. I wish our moderators would take care of that issue not just for me, but for the good of the group. There's always that one apple. I am too tired and sore and concerned about my future, to take the bait any more. So I simply aren't replying back. It's non-productive, helps no one here at the group. But I appreciate you caring enough to try.

Thanks

David in SC

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin

Thank you Bob and Ray

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin