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shane7
New Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 5
Posted 2/17/2009 6:05 PM (GMT -7)
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."

If I may politely ask a couple of questions:

  1. I talked to the radiologist, and he said there are benign lesions, however, he's not a urologist and after searching the Net I couldn't find any.
  2. He said there was no evidence that it has spread to any of the organs.
  3. Is this a large lesion/tumor?
  4. I know I need a PSA test, however, from I've been reading, a low PSA and this lesion means nothing...I assume I'll need a biopsy.

Any support would be greatly appreciated. I'm really down right now after everything I've already been through.

Peace and God's Blessings...

Shane

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Tony Crispino
Veteran Member
Joined : Missing Key Value : en-US, 587 2006
Posts : 8151
Posted 2/17/2009 6:20 PM (GMT -7)
Hi Shane,
You have had quite a year. I am sorry to hear that though I am happy to hear that your doctor feel they got it all. Pertaining to prostate cancer, your urologist was correct to point out that not all lesions are cancerous lesions. You are at a great facility and you are correct ~ you need a biopsy. But you won't find a better place to have the biopsy reviewed. If it is cancer they will likley have a good handle on it. If it isn't you will be monitoring this for years to come. Is 1.7cm large? A bit. But don't worry about the size. Get in there and follow through. You are already a champion ~ no reason to believe you won't be it again...

May peace be with you, too!

Tony
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Tony Crispino
Veteran Member
Joined : Missing Key Value : en-US, 587 2006
Posts : 8151
Posted 2/17/2009 6:22 PM (GMT -7)
BTW,
Welcome to HealingWell. If it is eventually determined to be cancer, you have found the best site on the web for caring and compassionate support. This is a great group...

Tony
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shane7
New Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 5
Posted 2/17/2009 6:42 PM (GMT -7)

Tony:

Thank you so very much for taking the time to respond back.

Well it's a new journey.

Peace and God's Blessings...

Shane

TC-LasVegas said...
Hi Shane,
You have had quite a year. I am sorry to hear that though I am happy to hear that your doctor feel they got it all. Pertaining to prostate cancer, your urologist was correct to point out that not all lesions are cancerous lesions. You are at a great facility and you are correct ~ you need a biopsy. But you won't find a better place to have the biopsy reviewed. If it is cancer they will likley have a good handle on it. If it isn't you will be monitoring this for years to come. Is 1.7cm large? A bit. But don't worry about the size. Get in there and follow through. You are already a champion ~ no reason to believe you won't be it again...

May peace be with you, too!

Tony

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Bluenose
Regular Member
Joined : Missing Key Value : en-US, 580 2008
Posts : 260
Posted 2/17/2009 7:04 PM (GMT -7)

 Welcome Shane...Tony's the man....peace to you my friend, let the light shine on you..

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gpg
Regular Member
Joined : Jan 2009
Posts : 180
Posted 2/17/2009 7:30 PM (GMT -7)
Shane,

I have no advice. I do want to welcome you and wish you well.

Scott
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25445
Posted 2/17/2009 7:34 PM (GMT -7)
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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James C.
Veteran Member
Joined : Missing Key Value : en-US, 583 2007
Posts : 4464
Posted 2/17/2009 8:27 PM (GMT -7)
Hello, new friend, glad to meet you, really hate the manner in which I am. Make sure you keep in touch as you get new info.
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klondiker
Regular Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 43
Posted 2/17/2009 10:59 PM (GMT -7)
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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shane7
New Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 5
Posted 2/17/2009 11:06 PM (GMT -7)
I was wondering when Tony said not to worry about size of lesion. Does this mean a lesion could be on the large end, yet still be in the "capsule"? What size in MM/CM or inches is a normal prostate? And I wonder when they said my lesion was 1.7cm, was that length. Tony thought I talked to the urologist, however, I talked to the radiologist.

Peace and God's Blessings...
Shane
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Tony Crispino
Veteran Member
Joined : Missing Key Value : en-US, 587 2006
Posts : 8151
Posted 2/18/2009 12:57 AM (GMT -7)
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)

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shane7
New Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 5
Posted 2/18/2009 4:17 AM (GMT -7)
Dear Tony:

Thank you again for responding.

I agree, as one of the things I left out, was last year, after my sacral amputation, was that a mass was found in my gallbladder. They thought it also might be cancer. The odds for surviving GB cancer are not good. After a radical hependectomy it was found that the mass was benign. So I agree, that until they actually have a sample(s) of the tissue all is speculation. I was just trying to find if there are documented cases of benign proststate lesions or cysts and except for BPH (Which I don't think shows as a lesion), I haven't found any. PIN are very small, it seems.

I just wanted to get your thoughts about if these lesions can be on the inside of the prostate, or are they on the surface, or is there no way of knowing, or would the radiologist be able to tell me?

An interesting note is that there is no mention of any lesion on my last CT or MRI 7 months ago, which tells me this is new, and possibly aggressive.


Wow, as I'm writing this it's sometimes tough to get up off the mat. I will take the time sometime shortly, once I get my bearings together, to list all the various things I've been through in the last 18 months...Chemo, heart ablation (due to the Chemo damaging the heart), peritonitis after the sacral surgery (coma for a week), having to learn to walk again since all my nerves from the S2 down have been removed...GB mass turning out to be okay..and now this...wow. I'm very spiritual, and I'm so very grateful to be here and to have my angel of a wife, my three beautiful children 18 months, 8 years old and my hero of a son, Johann who is 19 and a collegiate baseball player (I only bring up the baseball because I see you're into it, although I didn't read enough to know to what extent). Anyway, I need a break. I know this sounds selfish, but my family has been through so much. I'm a mule and can take it all...but not my family. I'm tired...and I'm sad.

Thank you for listening...Peace and God's Blessings to you and yours...
Shane
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25445
Posted 2/18/2009 6:37 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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divo
Veteran Member
Joined : Missing Key Value : en-US, 582 2008
Posts : 637
Posted 2/18/2009 7:37 AM (GMT -7)
Dear Shane,
Please stay here and read through the posts. It is heartwarming and funny sometimes, and sad sometimes, but reading all of the different stories will help you realize that there are so many scenarios to this illness....Your journey can help someone else who may read it and see that things can be overcome.

There are many who lurk here and read the posts, and I believe that they are helped just by realizing how many of us are in the same boat. I am a wife, and we have been in this battle for several years.
You are young and have gone through a horrific amount just in the last year and a half. You need to see that you are doing really well in spite of all. There are so many knowledgeable people here.that can help you try to understand your unique situation.. I really think it is a very special site on the internet.. Diane

"You were born for this wilderness, and you have the instruments to negotiate it safely."
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Tony Crispino
Veteran Member
Joined : Missing Key Value : en-US, 587 2006
Posts : 8151
Posted 2/18/2009 8:44 AM (GMT -7)
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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sandstorm
Regular Member
Joined : Missing Key Value : en-US, 587 2008
Posts : 194
Posted 2/18/2009 9:57 AM (GMT -7)
Welcome Shane,

Sorry about the tuff year you've had. All the best to you in your continuing journey.
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shane7
New Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 5
Posted 2/26/2009 1:21 PM (GMT -7)
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
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mirv
Regular Member
Joined : Missing Key Value : en-US, 586 2008
Posts : 30
Posted 2/26/2009 1:35 PM (GMT -7)
Hi Shane,
It made me feel real good to hear that you don't have PCa and I'm really happy that you won't have to deal with one more illness after all you've been through. It's great to hear good news like that! Best of luck with all the other stuff going on,
Take care!
Mark
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25445
Posted 2/26/2009 1:44 PM (GMT -7)
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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divo
Veteran Member
Joined : Missing Key Value : en-US, 582 2008
Posts : 637
Posted 2/26/2009 6:19 PM (GMT -7)
Your prayers were answered! Diane
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BillyMac
Veteran Member
Joined : Missing Key Value : en-US, 577 2008
Posts : 1858
Posted 2/26/2009 9:27 PM (GMT -7)
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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andy09
New Member
Joined : Mar 2009
Posts : 6
Posted 3/8/2009 4:08 AM (GMT -7)
Hi Shane and welcome!

My name is Andrea, I wanted to ask what kind of treatment did you receive for your giant cell tumor? I have one in my foot and I've had it since 2003. Back then the docs thought it was a cyst, but they finally got it right in 2005 when they did my fist surgery. I was sent to another doctor to obtain clean margins in 2006, but she couldn't, my foot was full of abnormal cells. She said that it might come back and I hoped it wouldn't but it did. Now I'm looking at a 3rd surgery and they have sent me to a cancer doctor out of Little Rock. I'm just about at my wits end with all the pain, meds, and on top another, surgery. I have opted to take another MRI in June to see if the tumor has grown, if it does my doctor says he is going to take a more aggressive approach along with surgery. The last MRI stated that not only is it back but it has gone into the joint space and wrapped around another tendon. In 2006 I had one tendon removed along with the tumor. The thought of chemo or radiation is very scary to me just as much as another surgery. I just had a golfball size of lipomas taken out in Feb. They came back benign. Now I getting set up for back surgery and possible knee surgery, for other reasons. The doctors have told me the the giant cell tumors are benign, but this one is really aggressive and it spreads. I really appreciate your input and I hope everything turns out okay and hang in there. (Thats what I keep telling myself)
I'm sure we will both get though this as scary as it all is
Andrea
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vs1vs2
Regular Member
Joined : Missing Key Value : en-US, 587 2008
Posts : 60
Posted 3/8/2009 6:05 AM (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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