can't stop worrying

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Keep calm
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 11/9/2008 1:05 PM (GMT -6)   
I'm the wife.  I've never posted anything on the Internet before, although I've been avidly reading this site for a while, and it is a really good one. 
 
My problem is I can't stop scouring the Internet, looking for Gleason 9 cancer survivors like us, but those who can speak personally about long term positive outcomes -- like 10-15 years without PSA recurrence after RP.  It scares me that I can't find them.  Yet, we were told there was a 40% chance that he would not have a biochemical recurrence in 10 years -- so where are the lucky 40%?  Perhaps they weren't finding the Gleason 9's early enough 10-15 years ago because PSA testing wasn't as prevalent?  I just don't know.
 
My darling husband (58) was diagnosed with PC this summer, coincidentally, just as we were celebrating our 30th wedding anniversary.  PSA went from .5 (2005), to .6(2006), to .7 (2007) to 1.4 at his annual checkup in 2008.  His internist found an "unusual ridge" and sent him immediately to a urologist - this was before we even knew the PSA doubled.  The urologist, also a conservative type, felt absolutely nothing -- he said the prostate was normal.  Put him on Cipro for a few weeks, which had no effect on the PSA.  At the post-Cipro DRE, the urologist said the prostate felt even more normal. After learning the PSA had doubled in a year, however, he immediately scheduled a biopsy.  Results came out Gleason 8, 5 out of 12 cores positive for cancer -- all on one side.  We were told with the aggressive Gleason 8, we did not have the luxury of waiting.  We were also told surgery was the only option, although one of the surgeons mentioned the possibility of 2 years of radiation combined with hormonal therapy as a possible alternative to surgery.  We didn't like the sound of that and, after meeting with 2 surgeons -- open and robotic -- we went with an open RP at Johns Hopkins this September.
 
Pathology report:  Upgraded to Gleason 9, negative margins, no seminal vesicle or lymph node involvement.  Perineural invasion as well as lymphatic and vascular invasion were noted.  No further treatment necessary.
 
First PSA last week was .1 undetectable (big sigh of relief). 
 
So here we are 9 weeks out from surgery and I can't stop worrying and can't stay off the Internet.  I'm worried about the lymphatic and vascular invasion in particular, which I saw noted in the written pathology report.  Now I'm sorry I asked for it.  We know the odds regarding aggressive Gleason 9 cancer, even with negative margins and clear nodes, vesicles etc.  We know about micrometastis and I feel like this is a ticking time bomb and we're just waiting for the other shoe to drop.  We're trying to be positive, living our lives from day to day and just enjoying and looking on the bright side.   For example, his recovery was quick -- only 24 hours in the hospital and dry from day the catheter was removed.  ED is a problem, but we're patient, committed and creative.  Plus, we know it is still early.  We were told to regard this particular problem as if he had had a stroke.  It takes a long, long time to recover.  We are dealing with it and, for the most part, enjoying life.  He has his energy back, feels good and is back to exercising.  He laughs like he used to and is busy at work.  We're planning a vacation, and yet, I still worry so much.  He is much smarter than I - he stays off the internet and only reads things sent to us by Hopkins, or Dr. Walsh's book.  I need to follow his example.
 
I don't ever expect to return to what, for us, was a lovely, normal life -- blissfully unaware and naive about cancer and never having heard of such things as neurovascular bundles and PSA anxiety.  I'd just like to know from those with more experience if it gets any easier, and, as long as PSA remains normal, whether it eventually becomes possible to get through a day without having questions  such as "will it come back?"  "when?"  "what if it does come back - what will happen to us?" at the forefront of my mind.  When, if ever, do you breathe easy with a Gleason 9?  I suspect the answer is never, but it would definitely ease my mind to know that there are long term Gleason 9 survivors who have not experienced biochemical recurrence.   
 
I know that for now, we are very very lucky.  And that should be enough. Perhaps it was caught early enough- indeed, I don't know how it could have been caught any earlier.  I just squirm because of all the uncertainty - it is making me crazy  and I want it to subside.  (I'm a controlling type, and I like things the way I like them. Obviously, I don't have a lot of experience with cancer.)
 
My short term solution:  I'm moving the laptop out of the family room and have resolved to stay off the Internet -- or at least, cut back.  My resolution is when I feel the urge to surf, to get out of the house and take a walk around the block.  Sometimes, too much information is bad thing - frankly, I think I'm at that point. 
 
Thank you for listening.
 
 

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 11/9/2008 1:28 PM (GMT -6)   
I recently posted a topic here that said "how not to worry about upcoming psa tests". After a rise in PSA and biopsy, I was told I had cancer (gleason 8). I immediately fell into a state of shock. I googled every spare minute I had searching on survival, increase psa, recurrence, etc. I literally lost 20 pounds before surgery from stress and worry. the surgery went well and only side effect is ED. I received a lot of good advice on "how not to worry".... take it from me, look on the positive side. make sure you do all the follow-ups with the doctor and be well versed but leave the doctoring to the doctors. this is the only site i come to (i found the md anderson hospital site and john hopkins good as well). other than that i know longer drive myself crazy with things that might occur in the future. hope this is helpful and i know exactly what you are going through. i did it to myself as well. sometimes i still do but am trying to get better at taking advice!
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
4 week and 6 week PSA >.04 (undetectible)
12 week PSA <.04
continent at 10 weeks (no pads!)
kegel's twice a day 20 reps


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 11/9/2008 5:04 PM (GMT -6)   
I must disagree with your generalization, in that I believe everyone's makeup and situation is different. I'm sure that had I left the "doctoring to the doctors", I'd be dead by now.

Like you, I am an "aggressive" cancer patient. I have met with/been treated by doctors whom I consider to be among the best (Partin at Johns Hopkins, Araujo at MD Anderson, Chen at Morristown) and at the other end of the scale, a urologist who feels surgery patients would be better off if the surgeon "communed with the spirits" rather than used anesthesia. I feel I have to be able to determine the level of a doctor's expertise and competence based on my own grasp of the situation.

I have been at this for almost four years and I still read about my disease and its treatments voraciously. Perhaps, had I been this obsessed years ago, I wouldn't be in the pickle in which I currently find myself.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/9/2008 5:46 PM (GMT -6)   
Hi Keep calm,
Welcome to the best site on the internet for caring and compassionate support. I was not too unlike you in that the internet, and this site, were so much a blessing to come by. And for your first post you did quite well. Let me start by saying that in the two years I have been in the fight, I have met many people with gleason 9 and they continue to do well. I have also done quite a bit of reading about and greeting new people as they came here as I am very active here in supporting others. I have read about and met 15 year guys with gleason 9 and 10. Notably Michael Milken, the Wall Street financier, he had Gleason 9 and lymph node involvement when he was diagnosed in 1994. Still kickin. But so many others as well.

I recommend a book for you ~ "Beating Prostate Cancer:Hormonal Therapy ad Diet" by Charles "Snuffy" Myers. Myers is a Gleason 9 stage 4 survivor as well as a world reknowned prostate cancer oncologist. The Walsh book is a bit outdated though his cobtributions to fighting prostate cancer are well noted. A strong commitment to diet and excersize is important, but so is the approach to the oncology. Your fist step is to await the PSA results. If they are good then doing nothing else is an option for now. The surgical pathology, while Gleason 9, was otherwise favorable. And if there is no residual disease then you might be in good shape.

So not to confuse you, I chose a very aggressive approach for a few reasons. For one, I was just 44 when diagnosed with prostate cancer that had already begun to spread and was no longer contained in the prostate. And also because of this, my Gleason 4+3=7 was indication it would act more like a Gleason 8. So we are doing the necessary things to still try to acheive a cure out of it.

I wish you both the very best and stay calm, and stay positive!

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 11/9/2008 6:15 PM (GMT -6)   
gordy, you are right. what my main point was to stay informed and be able to know what to expect. My PSA went up in one year and the doctor put me on antibiotics. they lowered the PSA lower than the PSA the year before. I kept asking how could this happen. the doctor said to be happy and get re-tested in 6 months. I went back to another doctor 4 months later and it was up again and later determined it was cancer. What I know now I probably would have had another PSA in a month or gone straight to a urologist (given that I have pc in my family). Agree with tony on the books to read.
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
4 week and 6 week PSA >.04 (undetectible)
12 week PSA <.04
continent at 10 weeks (no pads!)
kegel's twice a day 20 reps


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/9/2008 6:28 PM (GMT -6)   
Hello Keep Calm and welcome to the site, I truly wish you were here for different reasons. I am not sure it is possible not to worry, I mean this is cancer we are talking about. I to am a gleason 9 fighter and I would welcome the opportunity to chat with you via email.
There are some wonderful people with vast amounts of knowledge on this site and some of the smartest are posting on your thread, Rob, Tony, and Les are a wealth of information, please utilize them.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 11/9/2008 6:32 PM (GMT -6)   

Hi KC,

What you are experiencing is perfectly normal. I was diagnosed in April of this year and have been doing exactly as you. I have spent entire days on the net researching and reading incomprehensible medical jargon. In the last several weeks I have begun to ween myself off of the research habit. It takes some time. I now visit only this site and try to only visit once a day. Although I find myself here more often than that as I like keeping up with the other's stories.

I admire your husbands ability to put it aside. I have done so and feel that what will be will be and that I have done my best to effect a cure or at least slow the disease. I find that the more I occupy my mind and hands the less I think about the PCa. So, your resolve to take a walk will help. Probably improve your fitness as well and exercise is great for settling the mind.

Being positive is good too and you have reason to be so with the most recent PSA. I have a friend who just passed 5 years without a detectable PSA. His Uro told him he was cured and should have no further issues. He is 64 and an RP patient.

My plan is to get on with life and to integrate the monitoring and tracking of the PCa into it. Every day it seems a bit further away. I sincerely hope that you can let go somewhat and find some peace. Time will help. 

Take care,

Don


Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 11/9/2008 6:51 PM (GMT -6)   
Dear Keep Calm, Yes, you can....keep calm....Just take it one day at a time. You did the right thing, and it will be allright. This site is very helpful and a positive influence. The people that come here are compassionate, and smart, and kind....also are in the same boat as we all are. Try joining in, and you will feel better....Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 11/9/2008 9:47 PM (GMT -6)   
Keep Calm-
Welcome to the site and from one research obsessed individual to another, it will get better. In addition to the great posts already made, one thing to keep in mind is that research is being done as I sit here and type this. When my father's post op pathology came back and showed that a lymph node was involved, I was devastated! Like you, I read way too much on the internet and everything was negative. When it came to additional treatment, there were no studies that showed long term survival benefit for IMRT with lymph node involvement. We were absolutely devastated. Although controversial, we urged my father to have the IMRT done and he did. He is also on Lupron for 2 years. A couple of months after my father completed IMRT, a study came out that showed a significant benefit for IMRT in patients such as my father. Had he taken the advice of many of the medical experts we had met with, we might not have done the radiation. So, the moral of the story is, try to stay positive and maintain hope that your husband's cancer will be gone forever and IF, it happens to require additional treatment, that new treatments will continue to be an option and cure IS possible.
Last by not least, my family was very worried with my research obsession when my father was diagnosed. My husband banned me from the computer at a few different times. However, I have absolutely no regrets and have shared with my family that I have done everything in my power for my dad, and I sleep good knowing that I helped him find the best doctors and the best treatments. I'm only human and unfortunately don't have the cure to cancer. Neither do you. So, do what you have to do, but know that you too are only human and hold onto hope. You both will get through this, and as cliche as it sounds; everything does get easier with time. Stick around and keep us posted.

All the best,
Doting
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/9/2008 10:03 PM (GMT -6)   
An additional note.
As Doting has said there are studies that show that, in high risk cases, adding additional treatments before a relapse (this is called adjuvant therapy), do show better results that applying those same treatments after a relapse (called salvage therapy). If it were me, that would weigh heavily in my decision making, and I did make the decision to make those treatments adjuvant. I started with surgery, then added hormone therapy, then radiation therapy and I never have had a relapse. According to Harvard, Stanford, RTOG 93, and many other documented studies, including one by JHU, my odds are better than if I stopped at surgery and waited for a probable relapse.

But there are side effects that I incurred. I wasn't surprised when they did occur as I did my homework before beginning them.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 11/9/2008 9:24:40 PM (GMT-7)


Keep calm
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 11/10/2008 1:18 PM (GMT -6)   
Thank you all for your thoughtful (and prompt) comments.  Glad to know I'm not alone with the obsessive researching.  Good luck to each of you.   KC

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 11/10/2008 5:45 PM (GMT -6)   
We are here...for you.....D
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 11/10/2008 8:08 PM (GMT -6)   
Hey Keep Calm,
 
 
I'm in the same boat.  Found out Oct.27th that I had "some cancer down there."
PSa of 14.5, and biopsy showed 4 of 12 samples with cancer.  Since then, I have been on this machine every night looking for advice and answers. Perhaps I've read too much but the research has been eye-opening.  57 Years old and never had a thing wrong with me.  Perhaps my luck has changed but I told my wife that these are the cards I've been dealt, so I'll play this hand.
 
We meet with the urologist Thursday with a page full of questions, and so far I'm leaning towards radiation.  Your husband sounds like his attitude is great and that's a tremendous help.  Hang in there.
 

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 11/10/2008 9:13 PM (GMT -6)   
ralph alfalha, Welcome to the Forum. Seems like you are on the right course by researching it and having your questions already.
James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.

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