From a brand new member - thougths and questions about "our cancer"

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Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/18/2010 6:38 PM (GMT -6)   
Thoughts on Our Cancer from a brand new member:

After a steadily but moderately rising PSA (from 1.0 in 2001 to 4.4 in February ’10…age 56 to 65), the urologist we recently saw strongly recommended a 16-sample biopsy which was done on 4/19/10.

Results of 12 slides showed 5 positive, 1 suspicious and 6 OK (gleason 3+4) with both lobes and apex affected. Re-analysis of slides done at USC Medical Center showed pretty much the same thing, but called the “suspicious” one cancerous (<5% with a 3 + 3 gleason).

Mac is 65, in good health – works out everyday and eats wisely but got a bad DNA hand dealt to him in the form of coronary artery disease and had a triple heart bypass in ’06 – undertaken after annual treadmill followed by angiogram.

The urologist (who has done maybe 700 + radicals since 1990) seems like a good guy with lots of experience, but he practices at a hospital that, while respected for Cardiology, is not a particularly great institution. Thus, we have visited USC and UCLA medical centers and have an upcoming appt. at City of Hope. We're heavily leaning towards Robotic with Dr. Tim Wilson at Hope.

Bottom line seems pretty consistent (note: we haven’t considered anything but prostate removal)
Find the best & most experienced surgeon possible.
Post-op discomfort appears to be statistically better with Robotics vs open.
There doesn’t seem to be any data (other than on the DaVinci site) that indicates a better long-term outcome with the one over the other.
Other than anecdotal evidence there also does not seem to be any statistical evidence that suggests that nerve-sparing is more successful with Robotics over open.
Thanks, in advance, for any thoughts you might send our way!

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 5/18/2010 6:46 PM (GMT -6)   
It sounds to me like you have done your homework and have the situation well in hand. If your Uro has done that many RP he should be well qualified. That said, it is worth finding the best available and the one that you are most comfortable communicating with. Doctor as well as hospital. The Uro that did my RP had a great reputation and well experienced. However, I found that most of the communication was with his nurse practioneer and surrogates and very little directly with him. Some of these guys are so busy it's hard to get the time of day. Take yout time, do interviews and research their reps as much as possible.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day, stopped drugs, plan for AUS July 2010.
Latest PSA 4/1/10 negative.
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 5/18/2010 6:49 PM (GMT -6)   
Welcome and I hope you get the answers that you are seaking. City of Hope has a great resutation. I can tell you that my open surgery was non-eventful. Very little pain and quick recovery. There is very little evidence that one over the other is better. The most important factor is the experience of the Dr.

Just my 2 cents.

Cajuin Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 5/18/2010 7:06 PM (GMT -6)   

Dear Paella:

Your homework and conclusions re surgery seem sound, i.e. pick a great doctor with lots of experience and pick a great hospital.  If you don't mind, might I inquire as to why "removal" is the only option you have considered?  An educated patient generally looks at all options to feel comfortable with his decision.  Brachytherapy and/or added radiation, HIFU and Proton Beam therapy should probably at least be considered before making a final decision, IMHO.  The quality of life issues for a 65 year old bypass patient who has prostate surgery are not trivial...

Tudpock


Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/18/2010 7:07 PM (GMT -6)   
Sounds like you have done your research, gotten multiple opinions, and are heading a direction that you both agree with.

Certainly you have also talked about side effects, which are a real potential with surgery. They make the years to follow a challenge for 40 to 50 % of men having surgery.

That said, I would agree with choice based on the apical involvement, which could give you a higher chance for a positive margin.

Brachy is certainly a viable option with your volumes also, but the surgery will give you an absolute pathology and a definitive treatment plan based on that.

Welocme to the HW forum. We wish you all the best in the coming months.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/18/2010 7:23 PM (GMT -6)   
To all – thanks for you replies. And to Goodlife and Tudpock 18 (by the way, that’s a most interesting handle…where does it come from?) – it’s not that we didn’t look at and briefly consider radiation, proton therapy, brachy, etc. but we just didn’t consider them for very long. Mac’s relatively young age, relatively OK gleason, relatively low PSA, general good health place the non-removal options in the “no” category. Not only do we want an absolute pathology but we travel a lot (ie – teaching English in Spain this October) and don’t wish to live with an unknown. Obviously, if the pathology is unexpectedly negative (aren’t all the negative ones unexpected??) we’ll have to deal with that and the unknowns it entails. But for us, first step is removal with all its very probably unpleasant/lpainful/logistically-hassling/scary immediate outcome.

Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/18/2010 7:46 PM (GMT -6)   
Just a contrary point of view:

Surgery isn't trivial. It's a major operation, a couple of weeks with a catheter, high risk of urinary incontinence, erectile dysfunction, all the things you read about here. Some people do really well, some have major long term problems. Urinary incontence seems like the thing that bothers people the most. Robotic surgery hasn't been shown to give a lower risk of complications, it just gives a smaller incision and less blood loss (my biases...I had open surgery, did well, no incontinence).

Prostate cancer is slow growing. It may take 10, 20 or more years to make you sick.

The one study comparing surgery to no treatment ("watchful waiting") show no difference in survival between surgery and no treatment in patients over 65 at time they were randomized to their treatment group, with about 10 years of followup:

J Natl Cancer Inst. 2008 Aug 20;100(16):1144-54. Epub 2008 Aug 11.

Radical prostatectomy versus watchful waiting in localized prostate cancer: the Scandinavian prostate cancer group-4 randomized trial.

Bill-Axelson A, Holmberg L, Filén F, Ruutu M, Garmo H, Busch C, Nordling S, Häggman M, Andersson SO, Bratell S, Spångberg A, Palmgren J, Adami HO, Johansson JE; Scandinavian Prostate Cancer Group Study Number 4.

Coronary artery disease is a significant health problem, even if you are healthy otherwise.

If this were me, I'd see a few doctors to investigate other treatment options, that have already been mentioned. Something with lower risk of postoperative problems. Surgery might be a better option for young people...like those in their 50s.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 5/18/2010 8:41 PM (GMT -6)   

Dear Paella:

Just one more brief commentary then I'll shut up.  The stats you list and attributes you mention also make your friend a good candidate for non-surgical options.  And, I don't mean to rain on your parade but the "absolute pathology" you seek to take away the "unknown" is a bit of a pipe dream in reality.  Yes, you will know the final Gleason score and location of the tumor by cutting out the prostate.  But...there will still be plenty of unknown after that.  This forum is filled with guys who had a good looking post-op pathology only to experience rising PSA and the need for salvage radiation.  It also has guys who had dangerous looking pathology but no rise in PSA...yet the fear of same every time a routine PSA test was taken.  The point being that there is no sure thing even with surgery.

I guess my final encouragement is that you not just give other options a "brief" review.  Personally I spoke with multiple surgeons and radiation docs as well as telephone consults on PBT and HIFU before making my decision.  My only regret was not getting a color doppler procedure but I didn't know about that until joining this forum!  I guess I just like to see patients make educated choices and it's hard to see that happening without thoroughly exploring all of the pertinent options and doing so by direct discussions with different practitioners.

Sorry if I sound like a nag.  I wish you all of the best in your decision making whatever final choice you make.

Tudpock (Jim)

P.S.  If you Google "tudpock" you will only find references back to this forum...that's because it's a total imaginary name, having come to me in a dream one night after one too many cabernets...LOL!


Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 5/18/2010 8:53 PM (GMT -6)   
It seems like you have done your homework. There are many on this site who have gone the surgery route my self included. Many of us have had totally different experiences with the surgery and the post op issues. If you choose to go with robotic surgery, make sure that you choose a surgeon who has done 500 or more. It is very important to get the right doctor. Good luck.
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 5 months
2 months 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 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 5/19/2010 1:32 AM (GMT -6)   
Welcome,

I agree with the boys that you've been checking all the right things etc.
I have one thing to add, which is that because he has had a bypass you will need to make sure that there is a very good discussion between you the surgeon cardiologist and anaesthetist to make sure that robot surgery is okay (During a robot op you can spend up to 4 hours lying 45 degrees to the horizontal with your head below you feet) So it may be that they would be happier doing open surgery.

All the best. Adios

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/19/2010 1:58 AM (GMT -6)   
OOPS!! - I guess I pushed "submit" before I was finished. Please disregard the post above at 11:38 and read the below, instead. I really am new to this forum thing plus I've got to get to bed! From now on I'll write on a Word doc then cut and paste to the post. Sorry

Good suggestions. I agree that we should try to see a radiation doc - know any great ones in Southern California?

To Tudpock18: When would one get a color-doppler? Is it used to determine cancer or whether or not one needs a biopsy? Mac had an ultrasound (don't know if it was color) right before his biopsy while he was on the biopsy table. The doc said there were no visible lesions but still did the 16 needle-thing. Is it something we should look into post-biopsy but pre-treatment?

To Postop: you make a good point regarding Mac's coronary artery disease. What I understand you to say is "why go through a removal with its accompanying incontinence, ET, pain, plus a range of other potential complications when state of the art radiation or hormone treatment could control the spread of the cancer to a perfectly acceptable even excellent degree, especially for a 65 year old with CAD?"

I'm considering the following in my response to your point and to explain our almost-certain decision to have the removal:

- He's a young 65 (65 is the new 55?)
- His health really is quite excellent (no diabetes or other problems that we know of or worry
about - CAD caught before any symptoms - no angina, no heart attack, no symptoms,
super-fast recovery from triple bypass in '06, 5-6X weekly aerobic workouts maintaining 125
heart rate for 10 to 15minutes during each session, 6 month treadmills excellent, lipid panels
excellent)
- With removal he has a good statistical probability of beating the incontinence if not the ET.
- Per Urologist’s nomogram as well as one I’ve done myself on the Sloan Kettering site indicates
that there's a 20% to 27% probability that the disease has spread to outside the prostate
(extracapsular, seminal, lymph or a combination). But that means a 73 to 80% probability that
it has not spread to outside the prostate.
- Were we to choose radiation, for instance, instead of removal but later must have the P.
removed (a worse-case scenario) all the surgeons we’ve spoken to say the removal surgery
is much more difficult…a very different animal, if you will, with questionable outcome.
- It appears that many negative lifestyle affects happen with radiation, too..

Does this seem logical to you?

Mac’s statistics:
Age 65 - 5'11" Weight 210 BMI 29.1
Overall Heath Condition: Good
PSA: November 2001 = 1.0 slowly rising to 4.4 in Feb 2010
Biopsy: 04/19/10: Gleason 3 + 4 with 5 of 12 positive (2 at 15%, 1 at 5%,
1 at 25 and 1 at 35). Both lobes involved (right lobe with 1 positive at 5%).
Left Lateral and Left Apex involved with 15% and 35%.
No base involvement

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 5/19/2010 4:16 AM (GMT -6)   
Paella

If you hit the submit button too soon you can go back and edit/finish your post by clicking on the little icon of a pencil in the top right hand corner of the posting window. There is also a red cross there that you can use to delete a post, thus you could edit the first post you made and submitted too soon and then delte the second one.

(You only get to see the pencil and red cross next to posts that you make yourself)

Alfred

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/19/2010 6:40 AM (GMT -6)   
Paella, I commend you on your knowledge of a complex disease...looks like you have done alot of research and have as good an understanding of this disease as many of us who have been dealing with it for a few years.

My husband had his prostate removed in March 2008. For us, ED is a bigger issue than incontinence, which improved considerably once he hit the two year mark. Most men experience some form of incontinence after surgery and some experience ED...it's a bit of a crap shoot (pardon my Bronx!).

If surgery is the route you and hubby wish to go - and your logic is sound from what I'm reading - then a discussion with the doctors re your husband's bypass surgery is in order. As an FYI: a good friend of had quadruple bypass a few years ago followed by a complete hysterectomy 1 year ago and came through just fine.

Am happy to answer any questions you may have to the best of my ability so do not hesitate to ask away. I'm not shy or squeamish about discussing my husband's ED or incontinence so don't be afraid to ask probing questions.

Sephie from NY
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs 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, March 2010 0.0. Next PSA in 6 months. Thank you God!


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 5/19/2010 6:43 AM (GMT -6)   

Dear Paella:

Please see this link for a good explanation of color doppler.  The link was supplied by one of our forum members, JohnT, for which color doppler was a key part of his diagnosis.  http://www.pcref.org/  If John picks up on this thread he may also weigh in on the subject.

I'm glad you are taking the time to see a radiation oncologist.  Even if you don't choose radiation as a treatment, you will have done your homework properly and likely have more peace of mind re your final decision.  Seeing multiple urologists is interesting but you typically just get more surgical info and not the balance needed by seeing surgeons, radiation oncologists and prostate oncologists separately.
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 5/19/2010 7:34 AM (GMT -6)   
I think that everyone here would agree that you are certainly doing your due diligence in investigating treatments. At about the same age as your husband I opted for surgery on the grounds that I felt better about having the side effects up front rather than delayed as they might be with radiation. On the other hand, my brother who was treated at age 55 went for seeds in part because he didn’t want the disruption of surgery. Six years later he is still cancer free and reports the Viagra solves any side effect problems.

My reading of the literature is that there is no significant difference in either outcome or side effects between robotic and open. There also is not that much difference in recovery time. Remember that the major surgery is what happens inside, not how big a cut they make to get there and is thus the same for both.

In my case, a little over a year after surgery I use one light pad per day and find that perfectly livable. ED has been a bigger problem and my wife and I are still working at it. Neither of us had quite realized how much feedback she got from my physical state and how its lack could make her feel less than adequate. Both of us have had to learn to be much more verbal (me especially) and to very completely reinvent our lovemaking on that basis.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/19/2010 8:38 AM (GMT -6)   
wow - thanks for the feedback! I was so happy I could delete my "I-accidentally-pushed-submit" post! Any other general "ABC's of Posting on a Forum" tips?

The need to get a wholehearted OK from Mac's Cardiologist for the robotic version (brought up by both Alf and Sephie) was very helpful. Our first consult with an actual done-thousands-of robotics-medico isn't until next week at the City of Hope. I'm assuming it just wasn't brought up by our 2 previous consults because they specialize in open. To-date we've only had a brief phone consult with our Cardiologist at which time he said "get it out" but not via which procedure.

best - paella
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