getting more and more scared regarding ct scan outcomes

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kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/24/2007 6:06 PM (GMT -7)   
We recieved the actual report from radiologist in mail today.  I have been researching, but am going no where, other than getting scared.  The reports says ;
 
"There are scattered enlarged lymph nodes throughout the root of the mesentery as wll as some soft tissue nodular density ith the retroperitoneum behind the level of the left renal artery."
 
It goes on to say that he "cannot exclude metastasis with the presence of the other too numerous to count lymph nodes.  These range in size from 5 ml to 1.5 cm." 
 
He obviously was not too worried about the "one" in the retroperitoneum, but the others. 
 
Any help, reassurance or not, would be very appreciated. 
 
Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/24/2007 6:22 PM (GMT -7)   
KZIZ, really don't have any advise on the report. One thing you might do is start you a thread. Mine is called KW's Journey. Make all your postings there so we can follow your journey and help you out.
I live in Norman. Chatted with Courtney in the PCa room the other night. Found out your a golfer. Would enjoy having you out to play at TInker this summer after you recover. BTW...first time I went out after surgery I was just swinging easy and having fun. Shot a 10 over par! One shot over my personal best.
Good Luck.....KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Dr. said everythign looks fine.  Continue to work Kegeal's. Leaking appears to have improved after Cystoscope?!?!?!  Down to 3-4 pads per day! 
    May 22nd Follow up (unless incontenance does not improve by mid March) and 3rd Post Op PSA
   


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/24/2007 6:41 PM (GMT -7)   
kw, Kurt has a friend who is a marshall there. His nickname is Sarge, AKA Richard Bush. We would love to play this summer and would also love to have you up here to play. Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 2/24/2007 7:07 PM (GMT -7)   
Courtney,

I don't know anything about your CT scan (we didn't have one). But hopefully someone here will have more insight. Just wanted to say thinking of you and Kurt and hoping for the best. What did your doc say about the interpretation of those results?
Significant other diagnosed: 10/30/06
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Da Vinci Scheduled: 4/10/07


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/24/2007 7:24 PM (GMT -7)   

Hi Courtney & Kurt,

 

Stop and take a deep breath….. and feel all of our love covering you both with extra strength to get through this weekend….

 

It’s not going to do either of you any good to break down.  Pull all of our strengths and let us help you through until you can make contact with our doctor.  You know that the darkness will let so many “negative” thoughts come in…. don’t let them.  Hold on to each other and to us and let there be a beam of light surround you until you can get more answers….

 

I am truly sorry you received this in the mail with no personal contact to explain. 

Edit after readng next post!!.... Whewww... I'm sure glad he called and you have an appointment! 

 

At this time any positive info will help you!!!  I did find this when I typed in…

Lymph Node, Retroperitoneal and an article on eMedicine came up…partial quote from article....The cure rate for testicular cancer approaches 100%.

 

Edited this paragraph... after reading your new post after this one…

I went ahead and deleted the remainder of my message….

 

Know that our thoughts and prayers are surrounding you at this time. 

In Friendship ~ Lee & Buddy

 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

Post Edited (bluebird) : 2/24/2007 9:02:24 PM (GMT-7)


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/24/2007 8:23 PM (GMT -7)   
I am sorry that i didn't say that we did talk to the doctor who ordered the test. He called us the minute he received the results and said a few nodes were questionable, but it wasn't a lock that it was cancer. Since then we have talked to the urologist we have chosen here, and have an appointment set up for next friday to discuss his removal of Kurt's cath. He said that the swollen glands were not in a normal place for prostate cancer. I guess what scares me the most is the onocologist who I trust very much stated that there was a few nodes in the deep belly and back. But upon receiving the report, it states that there is too many to count and names the region, which I find way to close to the prostate. Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/24/2007 9:06 PM (GMT -7)   

J          Thank you for your update…. We will be keeping you extra close.


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/25/2007 11:25 AM (GMT -7)   
KZIZ, Sounds great. Will be keeping up on your journey. btw I am still using the Depends Undrguards for Men, the ones that look like a cup!...heheh...I like that.... Tell Kurt he will get comfortable with them real soon. Now I don't even know I'm wearing them. They are easy to carry. I keep one in a back pocket or jacket pocket all the time. As far a public disposal, I just wrap the used pad, new pad covering, and adheasive strip cover with tissue in a small bundle while in the stall. Then you can discreetly palm it and toss in the trash. I felt a bit uneasy at first, but know it's no big deal! As you can see on my Journey Page I have had quite a time with the incontenance. But I'm getting better. Just gotta keep working at it. Has not stopped me form doing anything I want.....especially playing golf. I even joke with the "guys" when it's time to "change Filters".....or Knock the pee out of the ball.....lololol Good Luck. KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Dr. said everythign looks fine.  Continue to work Kegeal's. Leaking appears to have improved after Cystoscope?!?!?!  Down to 3-4 pads per day! 
    May 22nd Follow up (unless incontenance does not improve by mid March) and 3rd Post Op PSA
   


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 2/25/2007 1:11 PM (GMT -7)   
Courtney and Kurt, my best wishes to you both as you continue on your journey. I'm glad you have an appt to discuss all the results. I certainly don't have a clue what it all means. God bless, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 2/25/2007 6:10 PM (GMT -7)   
I don't know what it all means either. Please keep us informed. We are worried about you.

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/25/2007 9:30 PM (GMT -7)   
Hey Kurt and Courtney, I may be ahead of myself here. You mentioned the appointment regarding Cath removal. I know alot of guys fear that. On my part it was no big deal. The nurse came in the room, had me stand while she knelt down, released the saline from the bulb that holds it in, told me to take a breath and exhale. It slid out without any pain. Just a strange sensation. I believe at the time I was still using the large Depends Belted undergarments. The ones that look like diapers that have velcro strips that go across the hips from front to back. But I was already having alot of leaking around the cathiter. You may be able to go straight to the Front Only Underguards. Be sure to take some with you.

Good Luck....KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Dr. said everythign looks fine.  Continue to work Kegeal's. Leaking appears to have improved after Cystoscope?!?!?!  Down to 3-4 pads per day! 
    May 22nd Follow up (unless incontenance does not improve by mid March) and 3rd Post Op PSA
   


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/26/2007 8:23 PM (GMT -7)   
kw, kurt's greatest fear is the cath itself. He posted that concern earlier this week and by the responses he received, he does feel much better. He told me as he was reading responses on his own for the first time that "this is GOOD!" He hasn't been back on since the latest report, but I am keeping him posted on different issues and responses and will continue to do so. We go to doc on friday morning to hopefully gain a better understanding of what results mean. All tests results have been sent to da vinci doc. He hasn't canceled the surgery yet. We will cont. to update..... Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 2/28/2007 3:22 PM (GMT -7)   
Hi Courtney,

I sure wish I could help you with the CT interpretation, but I don't know what it means. But I can tell Kurt, don't sweat the cath. I did before the surgery, because I didn't know anything about it, and the unknown was worse than the reality. It might have been different if I'd had to have it put in while I was awake, but since I woke up with it, it was just an irritation, both physically and situationally. I took mile-long walks with it, discreetly hidden under a big beach towel that I had hanging over my shoulder (This was in August in Texas, so it didn't look that weird).

You or he have GOT TO do two basic things with it, besides not letting the bag get too full,and cleaning it. The tube going into the penis has to stay greased with Neosporin or another triple antibiotic ointment, not cream. The ointment is the clear greasy stuff that won't dry out like the white cream. I think you want to get the plain kind and not the PLUS, the one with the anesthetic in it, because I don't know if it is a good idea for that stuff to be absorbed into the penis's mucous membrane. The other thing is to make sure the hospital or the nurses give you, and that you use, the velcro strap that goes around his thigh and provides strain relief for the tube. If they don't give you one, it is well worth trying to find one at a medical-surgical supply store. Taping it is too messy, because the adhesive comes off and becomes gummy and dirty. The velcro is like nylon, and dries quickly so that it can be left on in the shower. I found that the changing of the small leg bag to the larger night bag was an unnecessary inconvenience, and so I always used the night bag. The first time I tried to change from the large to the small, I accidentally pulled on the tube, and the pain was intense. But, this was only three or four days after the surgery, at home. I mean, they can put a man on the moon, but they can't develop a quick disconnect fitting to change from the night bag to the leg bag.

The removal of the catheter was done while I was awake, in preparation for a cystoscopy (lights, camera, action!) to see about a pinhole leak inside the pelvis that was at the junction of the bladder and the urethra. This was done a month after the surgery, because they were trying to see if the hole would close and so they left the catheter in three weeks longer than usual. A nurse removed it, and as she did, she told me to cough hard, and then it was out - - not with pain, but with a strange jolt that was gone in a flash. I don't mind saying I am a pain wuss, and so I took a Darvocet that they had given me to go home with, just before the cystoscope visit, and there was no problem. They didn't put the catheter back in, because the doctor thought the hole would just close up by itself. I guess it did, because I haven't filled up like a water balloon.

Keep us posted,
dj
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
Follow-up PSA (11/06): <0.008; serum T: 195 OFF Androgel (at present).


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 3/2/2007 2:31 PM (GMT -7)   
Went to local doc today. He said lymph nodes were bothersome, but not in usual spots for PCa. Now waiting to here back from Dr. F's office to make sure he will biopsy them. If not, doc here says we will just watch them with repeat CT scans. He did seem concerned regarding the "too numerous to count" as well as the size. So once again, we are back to wait and see, while all the while wondering....... Thank you to you all for the support and kind words. Kurt and I both feel that we have found life long friends. Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-15-07 in Austin


Motelmat
Regular Member


Date Joined Nov 2006
Total Posts : 50
   Posted 3/2/2007 3:21 PM (GMT -7)   
Kurt,
I was so afraid of the catheter that was one of the reasons I went for the DaVinci instead of the open because the catheter only had to be in for a week in the Da Vinci as opposed to 3 weeks for the open. But I found it was not a problem and the fitting they used on mine was very easy to change from the night bag to the smaller day bag and back and forth. I did not have a velco strap around my leg like someone mentioned above, but a little plastic piece they stuck to the inside of my right thigh (I sleep mostly on my right side) that kept the pressure of the tube off the penis (I could not even feel the littl eplastic piece was there) and I just pulled the fitting from the night bag out and took it off and then strapped on the leg bag for the day time use and plugged that into the fitting and away I went with no problems. To empty the day bag I just put my foot up on the edge of the toilet and opened the valve and let the day bag drain into the toilet.

So dont even think about the catheter, it is not a problem, just get rid of the cancer.

Motelmat

PSA 6.6, , biopsies On October 26, 06 with 5 positive and less than 30% cancer in any of them. Gleason 3+3.

Da Vinci surgery Feb 8, 2007 at SF VA hospital. 

Home 2/9/07, Catheter out 2/16/07,

biopsies after surgery Gleason 3 + 4, T2

(waiting for all of the other pathology info)

Minimum leakage, up to urinate twice a night.

The prostate surgery agravated a hernia on my right side I did not nkow I had, surgery for that on 2-27-07 and the pain and discomfort from that was much worst than the prostate surgery.


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 3/2/2007 4:51 PM (GMT -7)   

Dear Courtney,  I am sorry for the uncertaintly you and Kurt are facing.  I know how unpleasant it must be.  I certainly hope the best for you.

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!

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