Cancer doesn't follow the rules...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/20/2008 10:56 AM (GMT -6)   

Cancer doesn’t follow the rules…because cancer has no rules

Four years ago a small brown spot appeared between the base of the finger nail and my knuckle on my right ring finger.  This was just about half the size of the end of a pencil eraser.  My wife was worried and as with most of us married men, it is easier to just go along than try to use the logic that it isn’t a big deal…it is just a spot.

A trip to the dermatologist and as I expected...nothing to be concerned about as it didn’t look like anything serious to him.  He got out the nitrogen and froze the area with the comment if it comes back give him a call.

Well 10 months later the spot reemerged in nearly the same location.  Back to the doc we go.  This time at my wife’s insistence…a biopsy was performed…only way to know right?  Well the biopsy showed that it was skin cancer.  It is Squamous cell and not a very serious kind.  He prescribed a cream (Aldera I think) and we froze it off again.  He said we could do a surgical procedure, but in his opinion wasn’t necessary and besides it could affect how the nail would look.  You can guess the route I went.

Again 10 months later it reappears.  This time he does that deep freeze method…wow did that hurt.  But we should get it this time as he said.  He also went on to remind me that this isn’t going to be any problem for me ever.  Just freeze it off as it crops up he said.

And of course it comes back again in 10 months except now in addition to this same place…two new areas show up, one along each side of the nail this time.  Now ironically this was about the same time my GP referred me to an Urologist because of an elevated PSA.  Not even knowing what a PSA was, I began my research.  This is where I found the information about getting second opinions with biopsies.  Hmmm…maybe I ought to get a second opinion with my finger.

So a second opinion was scheduled with a new doctor which just so happened to be the same day I found out the results of my prostate biopsy.  You can imagine sitting in a waiting room to get a second opinion about a small skin cancer lesion and getting a phone call that you now also have prostate cancer.

The new doc was sympathetic, and confirmed that it didn’t look like the cancer on my finger was much to be concerned with…but let’s take another biopsy anyway and lots of pictures.  Two weeks later he calls and tells me that it was cancer as originally noted…but that the photos and slides were being sent for consultation with several other doctors over at Southwestern University cancer center.

Interesting, but my mind and thoughts were on my prostate cancer.  Two weeks later the university calls and has me scheduled for surgery.  Whoa…slow down here...now the questions start flying out.  It would be simple MOHS surgery where small amounts of tissue are removed until the margins are clean.  Very simple procedure…oh and by the way a plastic surgeon is scheduled if needed.  That didn’t sound too good but I am still more concerned with my prostate cancer than I am of a little small spot on my finger.  So I scheduled the surgery for several weeks after my prostatectomy.

Well the surgery was a success, the skin cancer is gone.  But…it required the removal of the entire top of my finger and the grafting of skin from the inside of my bicep to cover the damaged area.  The cancer had extended well under the nail and they were trying hard to save the finger I was told.

And what is the point of all this you ask?  What does this have to do with PCa?

This makes for an interesting conversation…Did I wait too long to get rid of the cancer by just freezing it every year and as a result it got worse to the point of forever damaging the finger…OR…Did I perform a surgery that was so radical and maybe not even necessary when I could just freeze it off as it came back and not endure the constant pain and ugly looking finger now.

There is no answer, but the point I want to make to those that have just been diagnosed with prostate cancer…step back and give it some time to research the treatment options and remember these three things:

1)     Cancer doesn’t follow the rules…because cancer has no rules. This is true with any form of cancer.  Keep in mind in order to have a statistic…you have those above the curve and those below the curve.  Which side of the curve are you on…you never know, which is the point.

2)     Don’t make your decision concerning treatment based solely on the side effects from the treatment.  Opting to take the least side effect method can possibly cause you even more grief and further (and sometimes limited) treatments later on.

3)     Don’t make a decision to over-treat either and cause more side effects than you need to endure.  Most of the time depending on age, Gleason score and stage…radical treatment won’t be necessary.

Make your decisions…your decision only…and don’t be pressed into any method of treatment without first doing your own research.


Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
14 tumors in prostate - largest being 6 cm 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/20/2008 11:12 AM (GMT -6)   
Les-

A great post and great advice.

I can't tell you how upset I get when I see members writing that they chose surgery almost immediately on diagnosis because "I wanted it out of my body as soon as possible", without doing any research or, not enough research to make an informed decision. Or having gotten second opinions. (I got five "second opinions" before I made my final decision.)

-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.


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4823
   Posted 10/20/2008 1:16 PM (GMT -6)   

I’ll never forget my second opinion...The doc couldn’t feel the nodules on my prostate like the first doc did...Course, when you get two conflicting opinions, you get to get a third….

 

The second opinion doc is my new GP...He admitted that due to his Asian ancestry, not to mention his short stubby fingers that he probably wasn’t the best guy to do digital exams.

 

Then you start to wonder – what if I had gone to him first...He wouldn’t have felt the nodules and my PSA was 1.3 So heaven only knows where I'd be in a few years..


Age 53   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy
10/03/08 - 1st Quarter PSA -> less then .01
 

Surgeon - Keith A. Waguespack, M.D.

Las Colinas and Plano Offices

 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/20/2008 3:48 PM (GMT -6)   

I am one of those who didn't seek a second opinion and opted for surgery immediately.

Following my biopsy, I had a call from the hospital scheduling an appointment for a bone scan. I knew immediately before the official appointment with my Uro that the biopsy had shown cancer. So I had some forewarning.

When I went to see my Uro, he told me I was Gleason 9 and that non-nerve sparing surgery gave me the best chance of a "cure". Was there any chance of a mistake in the biopsy? "None" he replied. So with an open and shut case like that we scheduled surgery.

He gave me a book which outlined the various options -- "Your Guide to Prostate Cancer" by Dr Prem Rashid (ISBN 983-42960-0-2). Of course, I had the opportunity to bail out if I discovered a better treatment, but I never did.

Do I have any regrets? None. Do I regret having non-nerve surgery? Maybe, in view of the organ confined pathology. But on the other side of the coin, if I had nerve sparing and the cancer returned, I would deeply regret not having a wider margin taken.

So I am happy with my outcome -- even the ED is not so bad.


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 


SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/20/2008 8:28 PM (GMT -6)   
Well, life doesn't follow the rules either.

Here's what we're dealing with. Okay, my husband was diagnosed with PCa a couple of weeks ago. Since that time, we've found out that my job is pretty much gone due to the economy. (I worked part-time, which was my preference since our child is so young.) Now, it looks like I've got to try and find a real, full-time job, but there really aren't a lot of jobs out there at this point. Mind you, my husband is on disability right now as he recovers from shoulder surgery. It was the pre-op physical that made his GP take note of the PSA numbers. Now that my job has, like Elvis, left the building, there's a mad scramble to figure out our finances. It doesn't look good. If I can't find work, we'll be scraping by. If I do find work, I won't be available for either the child or my husband.

Oh, it gets better. My husband's company is related to the financial industry. Our fear is that he won't have a job to which to return when all is said and done with the shoulder. If that's the case, there goes our health insurance as well. So now, as I see it, we're kind of in a race to get his PCa treated before what appears to be the inevitable happens. We're not sure that we have the luxury (if one can call it that) of shopping around for subsequent opinions and other surgeons. The surgeon he has now appears to be one of the best in this region, one who comes highly recommended by other people. I've done my research on him and I've seen nothing but good things. I suppose we're lucky that my husband was referred to him first.

So that's where we stand. It appears to be a no-win situation in the long run. Obviously, if I can find a job, I will take it. I'll have no choice. However, I don't see how I'll work it around the treatment for PCa and the child. Remember, it would take months for me to qualify for health insurance; it's not like that situation would be immediately solved by me finding full-time employment. We'll do what we have to do regardless. It's just that sometimes you're presented choices that are all seemingly unacceptable.
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/20/2008 10:05 PM (GMT -6)   
SurfingSpouse: sorry to hear your news.

An option you may wish to consider in hubby's case is a period of "watchful waiting" -- perhaps for one or two years. With a fairly low PSA and Gleason, this would be an option for him (although not for others with a higher Gleason). As always, this is a very individual choice with no "right" answers.

The economic situation may not turn out to be as bad as we first feared. Stay positive -- the darkest hour is just before dawn.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/21/2008 6:43 AM (GMT -6)   
Surfing...it is stories like yours that humble me the most. Life isn't fair at times, and this whole mess with our economy wasn't your fault, yet you are the ones that will suffer and our children will bear the expense. A couple of things to remember...there is the cobra plan available to your husband if it is needed to handle the medical. But the point I was making is exactly what Piano said. Don't rush to surgery when Watchful Waiting might be possible and not cause you extreme financial hardship. Talk it over with your doctor and give him the full story of where you and your husband are at right now. Often times there are clinic trials available which he may qualify for. Just make sure to open all doors before closing any of them, regardless of the reasons you have right now.

My prayers will go to you and yours....Keep strong
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
14 tumors in prostate - largest being 6 cm 


SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/21/2008 7:48 AM (GMT -6)   
I thought about watchful waiting. However, my husband had this same shoulder surgery last year on the other shoulder—he falls down a lot!—and his PSA was normal. So, within the span of a year, his PSA has gone up to 5. I don't think we can wait on this truthfully. We are black and studies have shown that PCa is especially prevalent in black men. I think we're going to have to deal with this now rather than later.

But I appreciate all of your kind words. We'll get through this. We just aren't going to have much fun while we do. I consider us lucky though. At least we have health insurance for now and the PCa was caught early. I'll keep you updated. We go for the bone scan today.
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 10/21/2008 9:57 AM (GMT -6)   
My advice for people newly diagnosed with prostate cancer is to seek-out the best and most competent medical advice available - from medical professionals who know the them and have been caring for them on other medical issues, including those who their primary care physician may have referred them to as a specialist in the field and who have reviewed the various test results and who are trained to analyze the factors and make recommendations.  Learning about the disease and researching treatment options are important things for all of us to do, and at the end of the day the treatment decision is a personal one.  I would discount medical diagnosis and advice offered on this or any other forum because, though well-meaning, such advice, if followed, has the potential to have harmful results.


Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0

 

Post Edited (Mavica) : 10/21/2008 10:44:27 AM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4083
   Posted 10/21/2008 12:29 PM (GMT -6)   

Dear Surfing:

I hope you read the last message from LV-TX carefully...especially the part about COBRA coverage.  Assuming you fill out the forms and apply at the right time, your husband will NOT lose his health care coverage if and when he loses his job.  Yes, health care coverage will probably cost more than you are now paying, but it will still be there for a period of time while is he looking for employment.

Beyond that, I cannot emphasize enough the peace of mind that comes with taking a good, thorough look at all alternatives.  You hear that over and over again on this site and I know it is true with me.  I am recently diagnosed and my wife and I have spent many, many hours looking at the alternatives.  At the end of the day I have chosen Brachytherapy.  That treatment may not be for everyone and, indeed, it may not be for your husband.  But...the decision the two of you are making is life changing and you really want to be as confident as possible when you make it.  Rushing into it for ANY reason could cause you to regret a decision forever.  Please...take a deep breath...and take the time to consider the alternatives so the two of you get comfortable with the decision....


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
Pre-procedure stage


SurfingSpouse
Regular Member


Date Joined Oct 2008
Total Posts : 23
   Posted 10/21/2008 1:45 PM (GMT -6)   
Don't worry, everyone. My husband is the impulsive one. I am not. This is why I end up being the one who does the research, talks to people and gets a sense of the big picture. We will discuss all of the alternatives before any decisions are made. We understand that no matter what we decide, we can't make the decision lightly. One reason I come to this forum is to make sure I'm seeing all of the angles. If there's something I've missed, one of you will point it out. (I love that!) So far, so good. I've yet to sit down with my husband and let him know all that he needs to know. He's not quite ready. But we'll have to have that talk before we see the doctor again. I want him to be able to make a fully informed decision. Since he has a tendency not to listen (not making a value judgment about men not listening, I'm just sayin'! :-) ) and won't hear the doctor when he talks, that's why I have to be on top of it all.

I thank you all for your opinions. I'm listening!
Husband's biopsy: 10/3/08
Husband's diagnosis: 10/10/08
Husband's age at time of diagnosis: 54
PSA: 5.0
Gleason: 3+4
Clinical stage at time of diagnosis: T1c
DRE: No nodules


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/21/2008 2:39 PM (GMT -6)   
Don't worry Surfing...you aren't being judgmental at all about us men not listening...exact reason I had my wife come with me to all the appointments. She often times heard things I didn't because I wasn't listening very well. I am sure with the expert advice from your doctors and with the important discussions with hubby, both of you will come to an agreement on what to do. Prostate cancer is a disease that involves both of you, the man and the wife together, so therefore decisions made are generally made together. As I told my wife, no matter what decision is made...it will be made together or not at all.

Best to you and yours
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 


SebringR
Regular Member


Date Joined Oct 2008
Total Posts : 29
   Posted 10/21/2008 8:40 PM (GMT -6)   
For me the decision came down to options and maintaining as many as possible.  Radiation and Surgery both viable options, but you can radiate after surgery, but may not be able to operate after radiation.  So I found folks from both sides of the table.  In the end those who were supporters of the proton beam at Lorba Linda pushed the daVinci, but the daVinci folks in SoCal were not pushing radiation.  I paired up with a friend six months post op and got the skinny good and bad.  Even when I figured I was ready for everything, I had never counted on having the cath in two weeks.  I was a slow healer and it took that long for the swelling to go down.
 
In the end I am more informed and a happy daVinci guy.  For anyone that asks I would tell them two things.  First dont be in a hurry prostate cancer moves slow.  Enjoy the sex and relax.  The take the daVinci, expect to recover quickly, gain an appreciation for your wife / gf wearing a pad for a few weeks and then working throuh the ED problems.  But always be happy, you are cancer free.
Age 51
Father died of prostate cancer at 73
Yearly PSA testing.
Biopsy after PSA went up .75 in one year
6 of 12 in needle biopsy where cancerous
DaVinci surgery 4/15/2008
Last PSA .008
 


AngelBeliever
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/21/2008 10:49 PM (GMT -6)   

Surfing Spouse...welcome from one newbie PC patient spouse to another.  And to all others, I found this site by typing in my husband's urgologist's name and have just spent the past two hours reading different posts, at times until tears welled up in my eyes and I needed a break.  Thanks to those for being here...you've helped me already with your stories.  Anyways, here's mine...

My husband (age 50) of two years (been with him 7) was diagnosed with PC two and a half months ago.  Slowly rising elevated PSAs for the past two years, but no enlargement, no symptoms and last year's biopsy (12 samples) all negative.  This summer he jumped to 7.5, was retested 3 weeks later and came back a 7.2 and had second biopsy.  Positive in 2 of 12 samples with < 5% in core in one and < 10% in core of two...gleason scores 6 and 7. Diagnosed T1c, Gleason 7, (pathology report confirmed at John Hopkins), CT scan negative. No evidence of perineural (spelling?) involvement.

I see now from reading other's posts his "knee jerk reaction" of "get it out of me" was very normal.  In fact I think if he could have scheduled surgery the next day he would of.  A very strong, stubborn and proud man, he wouldn't let me come to the diagnosis appointment, but came home with the news and the book the dr gave him to read and appointments with a radiation oncologist.  Turns out the radiation oncologist was the one that treated his first wife who passed from pancreatic cancer 8 years ago.  After our visit, he immediately decided radiation wasn't for him.  We were both certain that at his young age, the long term effects of radiation could be significant down the road, as well, would eliminate any surgery option if the cancer reared it's ugly head down the road and in light of the aggressiveness (gleason score) of his cancer.

Next appt with the urologist (I am now attending) he discussed the surgery options and advised that he only performed the perineal prostatectomy, because that was how he learned and learned under one of the best.  When asked if this surgery would be nerve sparing, he said yes definitely.  When asked what his complication ratios were for permanent incontinence and ED, he said "knock on wood 0% for incontinence and 50% for ED".  Having thought we were given a good recommendation of a urologist and having been seen by him for two years, my husband decided to go with this surgeon.  Surgeon advised my husband should lose some weight, preferably at least 20 lbs before the surgery.  His surgery was scheduled for 2 months (today by the way).  We spent the last two months dieting (with good results though)!

Hang in there with me, I know this is long, but I do have a point to make.  Anyways, for the last two months besides dieting with my husband, I've been reading the book, and doing the research.  Hubby said he was just fine, his mind was made up and there was no use spending a lot of time talking about negative stuff and worries and he wasn't going to waste time going to different doctors and going through extra tests.  Me?  My gut was in knots, I didn't think he was making a well-informed decision and after doing countless research hours on the computer into many wee hours of the morning, didn't find that the type of surgery he was having was very good for nerve sparing.  Now I'm not worried about the ED issue for me...heck, while I'm a 50 year old menopausal woman who has loved our intimate life, but the most important thing to me is to have my wonderful husband's arms around me for as long as possible.  I've lost my dear mother to colon cancer and I'm not ready to send him to his first wife.  And as for incontinence, well you're listening to a woman who had a 10 pound baby with only 3 hours of labor to boot. I've been crossing my legs when sneezing, coughing or laughing for the past five years now, it's something that can be dealt with.  However, I wasn't sure how my husband was going to react to these very real possibilities that the odds to me just weren't  good enough in his favor.  Finally last week, I erupted like Mt. St. Helens told him I couldn't stand not talking about this and asked him if he understood it was possible he might never have an erection for the rest of his life and how would feel about that.  His answer?  "Honey, it's just not going to happen that way... I'm sure of that".  It was like a light bulb went off, it struck me then, he was in total denial.  He hadn't talked to anyone in his family about this, hadn't talked to his best friends, barely talked to me about it, and he was going into this blind.  Well, I went on a tear (risking pissing him off I know) but informed his family what was going on, and our closest friends (one being a nurse) and we sort of did an intervention with him.  Turns out his brother-in-law had a laproscopic prostatectomy 4 years ago, my own father has been seeing a very highly respected urologist in town who is an expert at the davinci (and provided him with a complete packet) complete with links to actually watch and research this type of surgery.  He and I talked all weekend long about all of this and he came to the conclusion he was being foolish, but was embarrassed to call the doc on Monday (yesterday) to cancel his surgery at last minute.  He also admitted to me that when he scheduled his surgery, the scheduler told him another doc in the practice was going to start his surgery because they had to squeeze him in because they were so busy, but that his doc would take over after an hour.  I told him not a problem, I would be happy to make the calls and if his doctor didn't understand we needed another opinion that might be very telling.  And of course thinking to myself but not saying anything, what was he thinking, he hadn't even met this other doctor and we knew nothing about him.

I made my first call yesterday morning to the davinci doctor my Dad recommended (who was also in the same practice as the doctor who did my brother-in-law's procedure, who by the way has had no permanent difficulties at all.)  We got an immediate appointment for this afternoon, was treated with great compassion and spent time on the phone listening to our story.  The second call was to his other doctor's office to cancel his surgery and request a copy of his records and could I please come pick them up?  Well...another long story, but the general gist of it was, they didn't have his file, weren't sure where it was, then they found it at another of their offices and it was being faxed to the office, and can I call back at 2:30 to pick it up, at 2:30 informed they weren't going to have it because the doctor who was doing his surgery (oh yeah, his doctor was never taking over after he started) had the file with him, locked in his briefcase in his car to take home with him to review it the night before he was going to cut my husband open and do a very delicate surgery on him.  Oh and she just couldn't talk to me anymore because she was very busy and they'll call us when we can have his records.  By the way, she was very pissed that we were cancelling at the last minute and how could we even think of doing such a thing, didn't we know how busy these doctors were!  I called the new doctor back to ask what I should do, all we had was a copy of his most recent blood work and his two biopsy reports.  They told me not to worry, they would call the doctor and get the records.

After another sleepness night, my stomach in knots now because of the thought of what could have happened to my husband today and the mistake that could have been made, we had a wonderful experience with this new doctor and were so impressed that when we left the office and the elevator doors closed, we looked at each other and said "Wow...what a difference this whole experience has been".  Organized office, met with nurse, doctor's assistant, davinci coordinator, saw a movie of the procedure, met the doctor and by the way, they made the other practice get them the records, i don't know how it happened, but it did, and have an email contact as well as a 24 hour number to call if we have any questions or just need to talk.  We found out this doctor is training other doctors all over the country on the davinci, people have come from all over to him.  We are moving forward with the davinci, my husband has a much better chance at having less side effects, and yes as my name says, I believe in angels, and they were watching over us and stepped in when needed.  Both my husband and I are in total agreement we are now in the right place, with the right type of surgery for us, and while we know it's a long road ahead, and risks are there, we feel we've got a much better doctor and a good fighting chance of more than just cuddling.

And so the moral of my story...while I don't have much experience with this yet, I do know and feel strongly about this...make a fully informed decision, get how many opinions you need until you feel comfortable with your decision.  Guys you deserve the utmost in medical care, respect and compassion.  If the doctor's office seems disorganized, it's a reflection of management and the doctors are the management...run!  If you are treated rudely, run and don't ever let anyone feel you must take that kind of treatment.  If your doctor's office is too busy, yes he may be good, but you should never feel rushed and make sure you have all your questions answered.  If you don't...run!  Get a copy of all reports immediately and keep a file, you never know if you might just need to have your own copy.  Wives, it's okay to be a part of the decision and you should be.  You know your husband better than anyone else, watch for signs of denial.  Take whatever steps to be certain you believe your husband is making a well-informed choice.  They don't call it woman's intuition for nothing...it is a valuable insight.  Make sure your heart, head and gut are all in agreement.  If something doesn't feel right, even if it's slight, follow up on it, even if you risk pissing hubby off...you have the best of intentions for him and he will thank you later.  My husband, still strong, stubborn and proud said he's sorry he kept shutting me up these past two months, and said he is thanking God right now I took a stand with him and opened his eyes, and yes he had his doubts, but just believed that all doctors were good.

Thanks for bearing with me, I've had a lot to get off my chest.  I'll keep you posted with his results and I promise not to be so long-winded in the future.  Again, thank you all for being there.  I feel a lot less lonely right now, and I wish all of you good success in your fight. --- g.

PS  I'll figure out later how to add the signature, it's getting late.

 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/22/2008 4:21 AM (GMT -6)   
I agree that is it is important that you are both comfortable with the procedure that you choose. Good luck with the Da Vinci, whenever it is.

Incontinence is unlikely to be a long term problem, although quite possible in the short term. ED is more likely, but even if the worst happens and hubby has long-term ED, it is not the end of life as you know it. Several effective treatments are possible. Although I have long-term and possibly permanent ED, injections allow my wife and me a love life that is every bit as good as before.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/22/2008 7:04 AM (GMT -6)   
Kuddos to AngelBeliever and welcome to the forum community. You will meet lots of folks here that will be more than happy to answer any questions you might have down the road. Glad that hubby got "wise" and listened to your intuition and now you both are on the same page and are happy with the decisions made. Keep us informed with your progress and add a signature when you can.
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 10/23/2008 6:52 AM (GMT -6)   
Dear Surfing and Angel, Each one of you has handled the difficult part so well. Being informed and showing your husbands that you are there for them." In sickness and in health" are not just pretty words that we say when getting married....It is not "IF" is "WHEN".....Getting past the anxiety is HUGE! Once you are armed with some facts and start making plans you will be much calmer.
I read somewhere that the challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise. 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
Waiting for activation October 28 2008

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, April 21, 2018 1:28 PM (GMT -6)
There are a total of 2,953,983 posts in 324,067 threads.
View Active Threads


Who's Online
This forum has 162128 registered members. Please welcome our newest member, buggaluggs.
326 Guest(s), 7 Registered Member(s) are currently online.  Details
mezgom, Michael_T, 10LymeB, kloz31, looking4acure, xlyzd, Mopargirl