Hello...new guy.

Hello Shane, boy, you have been through a lot in the past year. I am glad you found us here, but hoping in the end you don't need us. You certainly don't need Prostate Cancer on top of all your other woes. I wish you only the best, may you continue to heal.

David in SC

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

Welcome Shane. There was some discussion recently about having guilt when some of us recover quicker than others. Your story makes me feel very blessed that I have done so well. Check in with us often.

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Age - 55
2004 PSA 2.7
2008 PSA 5.8
Sept 2008 PSA 5.66
Oct 2008 PSA 6.67
Biopsy on 11/25/2008 cancer found in 10% of one core , gleason 3+3=6
open RRP done on 1/14/2008. Pathology showed 20% of prostate cancerous, gleason 3+3=6, contained in capsule
First post op PSA 2/10/09 - 0.07
As of 2/11/09 down to one or two pads per day

Hi Shane,
Images are not facts in cancer. Those facts lie in the tissue samples. If there are no tissue samples, speculations may lead to unecessary treatment options. I know that a positive biopsy is unwanted, but it may also help you decide what to do. If images say "big" then it also says biopsy is locatable. You need a conventional biopsy before action.

Peace

Tony

Post Edited (TC-LasVegas) : 2/18/2009 1:36:04 AM (GMT-7)

Shane, you have a reason to feel sad, to feel tired, and yes, to feel mad. Sounds like you have a really wonderful family there, that, I am certain, motivates you to keep fighting the fights you have been enduring. Having a wonderful wife on the other end, makes a big, big difference in handling these difficult situations.

Your mental and emotional well being needs to be factored into your general health picture. You say you are a "mule", and that can be a good thing, but even a good Mule can get wore into the ground.

It's one of my pet peeves, that even with good doctors/nurses/other medical staff, they may be very good at the treatments they give you, or the meds may work very well for what they were designed, but little, if any attention is ever given or considered to how you are feeling inside your head as you go through all you go through.

I only wish you the best, the courage to continue the fights you are fighting, I wish the best to your wife and family, its not easy on them either, of course. That bothered me a lot when I have been going through medical crisises. But such it is.

Keep with us here, I hope we can be a true comfort to you.

David in SC

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

Shane,
I am accessible offline. My Email address is available here. I would be able to share my experience with advanced prostate cancer and coping. Even to share how my faith is my unmovable rock. Many blessings lie ahead. You should wait until the diagnosis before worry. And you know whose hands your life is in. So worry does not need to dominate you.

And agin, peace to you as well.

Tony

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Age 46 (44 when Dx)

An update.

Last week I posted the following:

"Hi...my name is Shane.

I'm 43 and last year I was Dx with giant cell tumor of the sacrum. I had to have a 14 hr surgery to remove the tumor and sacrum...24 units of blood and 3 months in the hospital. I was told I was cured. I have to self cath every 6 hours and have a colostomy.

Yesterday on a follow-up MRI (Johns Hopkins) my report read "Enhancing 1.7cm lesion in the left prostate peripheral zone. Please correlate with PSA levels. Prostate cancer cannot be excluded based on the image findings."

I decided to see Dr. Ballentine Carter, Director Division of Adult Urology Brady Urological Institute Johns Hopkins. I'm fortunate that I live within 50 miles of the institution.

Before speaking with him, I spoke with my surgeon who preformed my sacral operation, and he, like Tony, thought it was likely that the lesion was caused by the extensive work that was done in my sacral region. Tony was kind enough to look at my MRI report and answer a plethora of questions and concerns I had. Thank you Tony.

Yesterday I met with Dr. Carter, and after he looked at the MRI he too thought it was unlikely I have PC. Regardless, he ordered a PSA test. My results came back today as 0.9ng/ml. He said the was perfect and thought nothing more needed to done except to be tested again in six months.

For the past week, I've been mentally down and frightened. I hate to complain, but my family and I have been through a lot and I just wanted a break from the C word.

I'm very relieved, but I'm also feeling some guilt. When you've had cancer, you know what others in the same position are going through. When I came to this board, its members reached out. I feel guilty for having the good news, while I know others are having to battle, even though I've been through the battle before myself, albeit for something different. I start asking why was I told I was cured, not only with my sacral cancer when the the odds were around 25 -35% survival post operation, but also in October when they found a mass in my gallbladder and I had to have an open cholecystectomy and hepatectomy only for the mass to be benign...and now this...and again I escape. I should be ecstatic, and I am happy indeed, but I feel that I have the obligation to give back in a major way.

My prayers go out to all of you, and I sincerely appreciate the kindness that was bestowed on me during my very brief visit.

If any of you ever have questions regarding having to self intermittently cath, colostomies or sexual function with nerve loss (I have to intermittently cath every 4 to 6 hours since my nerves from my S2 down were removed due to a sacral giant cell tumor, plus I have a colostomy and I am unable to have an erection, although I can have a mild orgasm) please feel free to contact me. I have a experience in all these areas from a patient perspective and would love to give back to anyone on the board who needs support in these areas. I'm currently a patient advocate for Johns Hopkins in regards to those who are undergoing or have undergone a sacral operation, thus I'm used to listening.

Also, if any of you decide you want to come to Hopkins for treatment but live outside the area, you are more than welcome to stay at my home, and or, I can also provide transportation to and from the airport and to the hospital if need be. I also have a lot of contacts within the hospital and can typically refer people for quick appointments instead of having to deal with the long scheduling waits. I have contacts with Neuro, GI, Pancreatic, Plastic and now Urology. I've been successful getting people in need into the correct surgeon within days, vs. weeks or months that some find happens when they go through the normal scheduling offices. So please fell free to contact me if you need my assistance.

These are tough economic times and I know that any amount saved is important. My wife is a wonderful chef (I say chef and not cook, because she's incredible) and she loves to cook for others and we have a cozy abode in which you're welcome to share with us and our small family. Your wives/partners are also welcome.

You can contact me via shaneknee@gmail.com or sknee@lifeclinic.com hm 301.926.9643 mbl 301.370.8165

On one last note. I'm a believer in sound medical advice and protocol. However, I'm also a big believer in the power of prayer. Me and some others run a prayer list with over 500 prayer partners from all over the world. It's non religious affiliated and non denominational...we have Christians, Jews, Hindus, Muslims and those who are just spiritual. The list goes out several times a month. We've had MANY MIRACLES of people who have had difficult prognosis, only to be told after being put on the list, that they've either been cured or they're in remission. I know it's hard to believe, however, it's the truth. We provide updates on the list. You do not need to give your entire name, rather all we ask is that you tell us what you want to be prayed for. To be on the list you do NOT need to pray for others. As-a-matter-of-fact, many of those in need of prayer ask that they not get the list, rather just knowing they're being prayed for be so many is enough. I also make a pilgrimage when I can to Lady or Lourdes in Emmitsburg MD, and take the list of those in need to Father Jack. http://www.msmary.edu/grotto/

Like I mentioned previously, I'm a believer in science, sound medical protocols and modern medicine, however, Father Jack has reaffirmed my belief that science is simply God's language of revealing to us his power of creation and laws of the universe outside the written Word...and when it comes to medical treatment and cures, they don't always come by way of a pharmaceutical company or skill of a surgeon, alone. Who gives the gift of steady hands to the surgeon, or the ingredients in the life saving medicine? And is medicine and medical intervention the only treatment protocol? I say not, and I say this because I have personally witnessed miracles that I know were because of direct intervention by Father Jack and others like him and through the power of prayer.

Please note that Father Jack does not boast about such an ability, and we must remember that a miracle is not always by way of a cure. We must be steadfast in accepting God's will, respecting that what we don't understand does not mean that God is not working in our best interest. However, I humbly submit that I've witnessed Father Jack's gift of God healing, through him, first hand, I've met many others who proclaim the same thing.

If you'd like to know more about the miracles I've witnessed please feel free to contact me shaneknee@gmail.com.

You won't meet a nicer kinder soul, than Father Jack Lombardi. I encourage you to visit the Shrine and Grotto if you're ever in the Emmitsburg Maryland area. Also, be sure to visit this Web site http://www.emmitsburg.net/grotto/father_jack/list_of_homilys.htm
where you can read many of his inspirational and theological writings, which I like to call "From the Desk of Father Jack."

Peace and God's Blessings to all of you and yours...
Shane

I am thankful you don't have PC, nothing to feel guilty about, just something you don't have to worry about right now, especially with all you have endured already. We are glad when someone comes to us, awaiting a possible PCa dx. ,and then they walk away free of it. Perhaps if you are fortunate, you will never have to deal with it, I am hoping that for you. We all learn from each other here, and we learned from you too, and all your other medical troubles. Wishing only the best for you in the future.

David in SC

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3

I shall turn a blind eye to this one although it is very difficult with 50% of the post devoted to proselytizing.
Shane you will find nothing but joy here that you were cleared and caught a good break for a change.
Bill

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1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01

Post Edited (BillyMac) : 2/27/2009 2:31:12 PM (GMT-7)

Shane,

Please feel no guilt. First you have been through enough. Secondly, this is not something we wish to share. The fact that your dx is good with PC makes us rejoice with and for you.

Have a blessed day,
Tim

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Age at Dx:48, currently 49