Newbie and scared

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TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/1/2010 12:33 PM (GMT -6)   
Age: 48 (almost 49)

PSA: 5.3 now, was 2.something 18 months ago.

Brother with PCa, 18 months post Da Vinci is doing well.

Biopsy several weeks ago. 14 samples, 5 positive, Gleason 3+3

open laparoscopic surgery scheduled 9/23.

Scared to death about everything. Surgery, side effects, cath for 7-10 days, you name it.

I'm a basket case.

Jeff

Patches
Regular Member


Date Joined Jul 2010
Total Posts : 33
   Posted 9/1/2010 12:41 PM (GMT -6)   
I just recovered from an operation for Pca and am very pleased with the results.  My stats are very similiar to yours and I am back to work after 5 1/2 weeks recovery.  I opted for the longer recovery because I have to lift heavy loads from time to time.  I am dry 99% of the time and am able to have "normal" sex without the use of a pump or viagria.  So,  try not to worry and am looking forward to your complete recovery.

SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 9/1/2010 12:50 PM (GMT -6)   
Hang in there Jeff!!
 
From my experiences and journey, the toughest part for me was the biopsy. Surgery was uneventful and recovery is still ongoing but I take it one day at a time...
 
One very important thing that you have discovered is this forum!!! If you have any ?'s, need to vent, or just about anything during your journey their are very knowledgeable brothers here to help!!!
 
This forum will show you, your not alone you now have alot of people here pulling for you and here to help u!
 
 
 

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 9/1/2010 12:51 PM (GMT -6)   
Jeff,
Take some deep breaths. Read some of the signatures & past posts. Also the stickys at the top of the page. You'll most likely do just fine. I'm a relative newby, surgery a little less than 3 months ago. So far, so good.
I truly wish you the best of luck.
steve
50 Yrs. old. DX Feb, 2010 w/6.6 PSA.
Biopsy 04-24-10, Gleason 3+3=6
4 of 5 cores left side inv. 4 of 6 rt side
RRP 06-07-10....
16 days post-op, catheter out.
Gleason upgraded to 3+4
No involvement of lymph nodes & seminal vesicle.
Perineural invasion present :(
Totally continent @ 8 weeks post-op. (!!!)

TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/1/2010 12:56 PM (GMT -6)   
Wow - 3 replies shortly after I posted. Somehow I stumbled into the right site.

Thanks for the replies and support guys.

Jeff

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 9/1/2010 12:59 PM (GMT -6)   
Most of us have been where you are wondered what was in store for us and the uncertainty of our future.

If possible, take some comfort in the fact that:

1) Your case was caught early and your stats indicate a very very high probability of a complete recovery.

2) Prostate cancer has one of the highest survival rates of any cancer.

3) That for most men the incontinence is temporary. The erectile dysfunction is a tougher problem to overcome but most men are able to regain that function again too. either entirely on their own or with the help of medication.

Read all the posts here that you can (knowledge is power) but remember that this group is not (in my opinion) a true cross-section of prostate cancer patients. Most are either newly diagnosed or newly treated or are men with more serious cases of cancer or have more serious side effects from their treatments. In other words, you will probably read a lot of posts about on going problems that most men who are treated never experience.

Dan

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 9/1/2010 1:05 PM (GMT -6)   
Hi Jeff and welcome to our site, the site no one wants to join, but glad that you found us.
Take a deep breath and try to relax. I know, it's easier said than done, but your initial numbers look quite good and you should have many options available to successfully attack you problem. There are lots of guys here able and willing to try and help you in any way they can.
Please stay in touch and keep us informed of your journey.
All the best to you.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date <.04

spmedman
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/1/2010 1:19 PM (GMT -6)   
I,m three weeks post-op robotic. Everything caught early no spread. Dad and older brother pca. So far recovering well. Mild leakage only at end of day. Good blatter control day and nite. Starting to get some erectile response. Was put on daily(30) cialis one week post op. Doctor said to promote early blood flow for healing more so than for erection.  Returned to work this week as well. No lifting anything over ten pounds for three more weeks. Not that I did before surgery.  All will go well !!!!

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/1/2010 1:21 PM (GMT -6)   
Hi Jeff,

Well, you've found the right place-welcome. As Mag said take a deep breathe and try to relax. My husband had surgery Aug. 9th and was back to work in two weeks. He never really minded the catheter, had it out 1 week after surgery and after a few days of drips is now totally dry. You have good stats and I'm sure you will do just fine.

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/1/2010 1:25 PM (GMT -6)   
Yup -- they are going to cut you open and rearrange your insides -- you have every right to be scared. But you can also use this next three weeks to do something.
Step up your exercise -- a fit body recovers more quickly.
Look at your diet -- less red meat and fat and more veggies and whole grains -- it won't do anything for your cancer, but it will up your chances of a long healthy life.
Read and learn -- look at the links at the top of the topics list. Knowledge fights fear.
Oh, and give your prostate a chance to work whenever you can!

TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/1/2010 1:40 PM (GMT -6)   
I think what's thrown me for such a loop is that is came as a total shock.

FP Dr: "Hmm, your PSA is rising, let's check it in 6 months. I'm sure it's nothing."

FP Dr: "Hmm, still rising. I'll get you a Uro consult. I'm sure it's nothing."

Uro: "This probably nothing, lets put you on antibiotics and recheck your PSA in 6 weeks."

Uro: "Huh. We should do a biospy just to be sure. It's probably nothing."

Uro: "You have cancer."

Me: "D'oh!"

Tim-from-Maine
Regular Member


Date Joined Apr 2010
Total Posts : 83
   Posted 9/1/2010 3:09 PM (GMT -6)   
Jeff,

Welcome --After the intial shock wears off, I suggest you put your energies toward reading as much as possible on the treatment options and lifestyle changes that will help in beating this thing. There is a whole lot of info out there and you need to become your own expert and advocate. Lots of decisions to make.
PSA Feb 09 - 9
Dx age 62 - March 2009 - Gleason 7

Surgery - da-vinci RP on April 29, 2009 Gleason upgraded to 9

Started VEGAN diet June 2009

3 month PSA - <.04

6 month PSA <.04

9 month PSA .05

12 Month PSA .16

SRT began May 3, 2010

SRT complete June 25, 2010 - 38 treatments
Accidental PSA from Primary care physician = .05 on Aug 16, 2010

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/1/2010 3:10 PM (GMT -6)   
Good summary, Jeff. That was just like my experience. Of course you skipped the introduction to the DRE part, but we probably all had a similar course.

Welcome to HealingWell. You'll see camaraderie, debate, support, education, and much more. And none of it will be a bad thing. My advice is to take it all in. Knowledge is Power. And power overcomes fear.

Peace

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 9/1/2010 6:04 PM (GMT -6)   
Welcome Jeff,
Yes, when I heard the word cancer it took my breath away, the when I called my wife to tell her the tears fell. It does get better and hopefully they will get it out of you and send you on your way to a healthy life. Keep us in the loop as you approach surgery.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 9/1/2010 6:28 PM (GMT -6)   
Hi, Jeff

It's a freak out for sure, but nothing you can't handle. Your odds are excellent for a complete recovery from the cancer and full urinary continence and to be able to have a satisfying sex life, even if it's somewhat different than now. You got it early. Be happy that you got this type of cancer and not some other type of cancer; this is highly treatable and very few people die from it who get it this early.

Some suggestions:

Reach out for support from family, friends, spouse/so as well as here.

Read the book "Surviving Prostate Cancer" by Patrick Walsh, one of the foremost authorities.

Plan on getting second opinions so you hear about both the surgery options and radition options from people who are skilled with them.

Above all, make sure that the doctor who treats you is someone who specializes in prostate cancer and has treated hundreds of patients with whatever method you ultimately choose.

Ask lots of questions and don't feel railroaded into making a decision tomorrow. You can take a couple of months to decide what to do.

Again, and take comfort that what you have is beat-able and you caught it early.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/1/2010 6:42 PM (GMT -6)   
Jeff,

Welcome to our world, unfortunately for you. But glad you found us.

I can't really add anything of substence to all the good advice you have been given so far.

We will help and support you in any way you need. No such thing as a dumb question, and sometimes the smallest of details can be frustrating. We can help you with that kind of s tuff.

The fear, is normal and expected. The best cure; knowledge, learn all you can about what you are faced with, and don't let anyone or any doctor bully you into rushing into a treatment decision.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 9/1/2010 8:38 PM (GMT -6)   
Jeff, The surgery itself is less frightening than the anxiety before it and waiting for the pathology report after it. Take a deep breath and relax. There is nothing you can do that will change the outcome. Hopefully you will have a successful surgery and a good pathology report.
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
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

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 9/1/2010 8:39 PM (GMT -6)   

Hi Jeff,pc hit me at 46 and when the doctor told me the news,I saw my life in about one minute.

it is ok to be scare,but you came to the right place and we are here to walk with you every step of the way.I walked the entire road by myself,but you will not.It will be just fine God bless you. yeah

 


spmedman
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/1/2010 8:55 PM (GMT -6)   
Didn't discover this site until after my surgery. Still a great find. Best friend was dx two years ago. Has had a complete recovery. No ED or incontience. He had non rx assisted erection six weeks post-op.

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 9/1/2010 9:58 PM (GMT -6)   
Hello TinFoilHat,

I too am a scared newbie. AS you stated, "I think what's thrown me for such a loop is that is came as a total shock." I've pretty much narrowed my treatment choices down to Brachy and da Vinci. I am hesitant to do anything.

I feel almost perfect today. Physical relations with my wife are great. My stream is weaker than I'd like, but the valves all work. The question seems to be whether to Brachy now and suffer the side effects gradually, or surgery and experience the effects immediately.

There are some good people here. We'll get through this brother.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/1/2010 10:07 PM (GMT -6)   
Hi Tinfoil AND Pocketman,

I totally know what you are talking about .. the fear completely over took us .. my husband diagnosed end of June and surgery last week ! Prior to the surgery, my first post was frantic. The diagnosis hit us like a ton of bricks. It was sureal. I was imagining the worst and wasnt sure if reading was helping or hurting but I thank god I found this site and the warm and loving folks here.

We made it through the decision. We made it through the surgery. And, now are 1 week into recovery and he's doing great. No pain. Some tenderness. Catheter due to come out on Friday and path results as well on Friday.

The thing that I learned the most from being here is that NO two PC cases are teh same. There is no formula. What there is - is HOPE - as you see some heal sooner than others. And many heal altogether. Hang in there. Vent if you can. Good luck to you on your journeys.
Judy
Husband DX on 6/30. Age 56. PSA 5.8 and 1 month later 7.9. Biopsy showed 6 out of 12 Cores Adenocarcinoma. 5 = 50% - 90%, 1 = 10%. Perineural invasion present. Gleason 7 (3+4). RRP scheduled with Dr. David Samadi Mt Sinai. NYC. 8/26.

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 9/2/2010 1:24 AM (GMT -6)   
Hi Jeff,

We had a two-pronged way of working through the fear.

The first was knowledge. As you are scheduled in for surgery a good book to get is Patrick Walsh's book - he is the pioneer of the nerve sparing technique. Another good resource is the sloan kettering nonograms which you can google - you plug in your numbers and it spits out your 5 and 10yr recurrance free survival rate and you will see these numbers are very high. The entity that is prostate cancer is complex but its worth trying to understand the basis simply because it allows you to understand pathology reports, enables you to ask the right questions and gives you back some control of what seems to be a situation which is out of control.

The second was the acknowledgement that we needed support - from family and friends and the lovely people here at Healing well.

Hope this helps you,
An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)

Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4. Neg margins, seminal vesicles, extraprostatic extension. Multifocal, with involvement in the peripheral, apex, fibro-muscular and transitional zones.

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 9/2/2010 2:03 AM (GMT -6)   
Hi Tin,
 
I am 45 years old and scheduled for an open RP on September 20th.  If you were not scared, you would not be human.
 
All these guys are right about having a positive outlook.  I am sure I got as much out of their comments as you did.
 
Retire

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/2/2010 6:20 AM (GMT -6)   
Jeff (TinFoilHat), it's perfectly natural to be "scared to death" ... many of us have been where you are now and know all too well those feelings (they're horrible). My husband - who is a self-admitted "baby" when it comes to any type of pain or discomfort, went through the surgery with no problems. His biggest complaint was the catheter for 9 days...I think that's a pretty standard complaint as no one likes having that darn thing stuck in them. But, it comes out and then life becomes more normal.

The anxiety leading up to surgery is often worse than the actual operation ... after all, you'll be in happy land for a few hours and will have absolutely no idea of what's going on. The after effects differ from patient to patient and, hopefully in your situation, will be minimal. I do hope that your doctor hasn't made any promises one way or the other as to what you will or won't experience after surgery. Some doctors like to tout percentages - how many men regain urinary continence X number of months after surgery, etc. Even though I did not go through the surgery, I watched my husband and best friend struggle with the after effects and there are always some. Not saying this to scare you but simply so that you are not surprised should the healing process not go as "predicted."

The best thing you can do is learn as much as you can about your disease...try not to focus too much on statistics because as many of us already know, you are not a statistic. At 48 years of age you should have no difficulty with the surgery and I'm confident you'll come through with flying colors. I'm sorry that you are dealing with this at such a young age and am glad to hear that your brother is doing well - so will you.

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 9/2/2010 7:09 AM (GMT -6)   
"... after all, you'll be in happy land for a few hours and will have absolutely no idea of what's going on ..."

This is almost comic relief Sephie. My wife asked the doctor how long would the procedure be and his reply was "2-3 hours for you and I. For your husband, hardly any time at all."

Thanks for the advice about focusing on statistics. It occurred to me last night that I was doing just that. All PC situations are different and statistics are for overall results and may not even be applicable to my situation.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
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