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DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 5/14/2009 6:08 PM (GMT -6)   
My boyfriend had robotic surgery at Cleveland Clinic today. The surgeon's demeanor wasn't very encouraging at all. The operation took about 6 1/2 hours. He said the gland was stuck to the wall and they had to cut a hole in his rectum, which they will fix. He said it could be from inflammation from the biopsy or inflammation from cancer.  His PSA last week was 15, up from 10 in January.  He said the MRI showed it was outside the capsule, so I expect he will get upgraded to T3 and have to have radiation. Is there anything to prevent hair loss? He has really beautiful long blond hair, it's part of his rock n' roll band image, and I think that will be hard if he loses it.
 
To make matters worse, his job laid him off Friday to save on insurance premiums (he was a great worker), 4 days away from qualifying for FMLA. I know he can get reduced COBRA, but I'm afraid it will still be exorbitant now that he has a pre-existing condition. Last week I found out I have a tumor in my breast and have a consult for a biopsy on Tuesday. Things are hard and it's tough to feel positive right now.
 
Thanks for letting me share here and get this out and I really appreciate all the information and support that has been shown to us here. God bless you all.
 
Dana


SO diagnosed 4/15/09 age 47
PSA 10
Right side= Gleason 4+4=7, 40% involved, 5 out of 6 cores positive, perineural invasion present
Left side+ Gleason 4+4=8, 60% involved, 5 out of 6 cores positive, no perineural invasion present
T2c

Post Edited (DanaA) : 5/14/2009 8:59:18 PM (GMT-6)


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/14/2009 6:12 PM (GMT -6)   
Hi Dana! Sorry to hear the surgery was a bit more complicated than expected. Please keep us posted on how he is doing. Regarding radiation, he shouldn't lose any hair. The radiation is target at the pelvic area only. Hang in there!!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 5/14/2009 6:21 PM (GMT -6)   
Hi Dana,
Sorry about the surgery being so complicated and long. At this point, worrying about hair loss should be the least of his worry. His life and his health are a lot more important. Best of luck in his journey.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
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
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/14/2009 6:36 PM (GMT -6)   
Dana, I hope things improve for the two of you, you definitely got your plate full right now. Please keep us posted closely.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 5/14/2009 7:17 PM (GMT -6)   
Dear Dana,
You are in our prayers. I know it is hard to deal with two crises at once. My wife had a lump in her breast and my cancer returned all in one week. My wifes lump was benign as I hope yours will be. I'm still dealing with the recurrence and I am scheduled for IMRT. Your boyfriend still has lots of options and I'm sure it will all work out for the both of you.
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/14/2009 8:25 PM (GMT -6)   
It is a real bummer when after making the difficult decision to go with surgery it has to become difficult and complicated. Still it sounds as though the surgeon was determined to get all he could see and you have my best wishes for his speedy and full recovery. Best wishes for your biopsy and am hoping to read that the result says benign tissue.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 5/14/2009 8:38 PM (GMT -6)   
Dana, sorry about the report. Ref. your boyfriend's insurance, many plans continue coverage through the end of the month of termination of employment. Check with the employer. If that's the case, the prostatectony will be covered by the active plan. The COBRA coverage, while expensive, has to provide the same level of coverage as the group plan. Additionally, they can not exclude or reduce your benefit due to pre-x. Pay attention to the election period however, so you do not miss the opportunity to elect COBRA coverage.
Age 51, (50 at DX)
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
ED, need a little help from Levitra
First post op PSA 11/11/08, 0.00
Second post op PSA 2/10/09, 0.00


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 5/14/2009 8:49 PM (GMT -6)   
Dana...some good news (you could use it)... Radiation won't make his hair fall out (chemo might, radiation won't)... If you get the COBRA set up, pre-existing conditions will not matter...with COBRA his coverage will be continuous and the coverage will be the same as before.  Also, the stimulus plan will pay for 65% of the premium cost for up to 9 months...
 
Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 5/14/2009 8:51 PM (GMT -6)   
When my doctor went over my scans before surgery he warned me that there was a possibility that he would puncture my rectum. But he said; “Don’t worry, I’ll be alert for it and if it happens we can fix it.” I’m thankful that it didn’t happen but it seems that this is not a completely unexpected occurrence and that the repair is within scope of a good surgeon. It may be a small consolation, but apparently this is a complication that doctors are ready to deal with.

As far as hair loss, I haven’t read anything about it on this board and I agree with the point that the radiation is very focused. The most common radiation side effect mentioned seems to be fatigue. Given my positive margins and capsular penetration I may be facing this. The stories of those who have been there have helped raise my courage if I have to face it.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.


DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 5/14/2009 9:10 PM (GMT -6)   
Thanks so much for the positive words, it helped and I really needed it today. I guess because I'm a vain female I think about hair loss.  I guess it's more connected with breast cancer because the breast is closer to the head? He doesn't even know about the MRI and extracapsular penetration yet. I plan to keep mum about everything until we get the pathology report next week.
 
Dana
SO diagnosed 4/15/09 age 47
1/15/09=PSA 10
Dx 4/15/09=Right side= Gleason 4+4=7, 40% involved, 5 out of 6 cores positive, perineural invasion present
Left side+ Gleason 4+4=8, 60% involved, 5 out of 6 cores positive, no perineural invasion present
T2c
5/14/09=Robotic surgery at Cleveland Clinic by Dr. Gong
pre-op PSA 15, MRI shows extracapsular penetration


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 5/14/2009 11:04 PM (GMT -6)   
Dana,
No hair loss from radiation. I have one question, why did they do surgery when the MRI showed it had already escaped the prostate? Did the doctor discuss any other options because of this?

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


DanaA
Regular Member


Date Joined Jan 2009
Total Posts : 71
   Posted 5/15/2009 6:03 AM (GMT -6)   
Why do you ask John? What is the standard treatment when it's escaped the prostate? I was calling all week for the MRI results and they weren't ready before surgery. He had the MRI the Monday before the Thursday operation. The day before surgery the dr. assistant said he got the films but not the report. I  complained on the delay in the report, but she told me it wasn't a problem, that the surgeon reads films regularly.
 
 
Dana
SO diagnosed 4/15/09 age 47
1/15/09=PSA 10
Dx 4/15/09=Right side= Gleason 4+4=7, 40% involved, 5 out of 6 cores positive, perineural invasion present
Left side+ Gleason 4+4=8, 60% involved, 5 out of 6 cores positive, no perineural invasion present
T2c
5/14/09=Robotic surgery at Cleveland Clinic by Dr. Gong
pre-op PSA 15, MRI shows extracapsular penetration


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 5/15/2009 8:39 AM (GMT -6)   
You may not have as much to worry about as you think and I would definitely wait for the path report which will be much more definitive about extracapsular extension.

In the first place, it seems that about 30%-60% of patients with stage T1 or T2 show extracapsular extension. So it is fairly common. When you get the path report, plug the information into the sloan-kettering nomograms and you are likely to find about a 70% chance of your friend being cancer free for 10 years.

According to Dr Scardino's book, extracapsular extension refers to microscopic extensions and does not indicate a spread throughout the body. He also says that the options are either surgery or radiation. Elsewhere I read that with stage T1-2 the chances are nearly 90% that the extension is less than 3 mm which is around 1/10 of an inch (which is to say that lots of them are measured in hundredths of an inch.)

Keep us informed and take time to care for yourself as well, both medically and mentally.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.

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