"???" - Scan Results Confirmed? *** UPDATE ***

Sundanceh
Sundanceh Member Posts: 4,392 Member
edited March 2013 in Colorectal Cancer #1

Well…..

 

This was a frustrating day…took over 4-hours for a blood draw and an onco consult:(

 

As soon as we hit their driveway we knew it was going to be a long day…so busy they had traffic controllers directing cars into waiting areas to queue just to get in line, LOL!

 

Front desk jammed…waiting room packed like sardines…SRO…then appt mishaps and reschedules followed by one couple who never checked in correctly and had the appt prior to ours…so we waited some more…

 

And then inside…waited…and waited…and waited some more…

 

And then came the apologies when he did show up at our door…1/2 a day gone from work on what should have been a routine visit. 

 

That hospital is more packed now than I’ve ever seen it…the Cancer Business is obviously alive and well...

 

Anyway, he comes in and blah blah blah…I said let’s talk about these 8-words…

 

”New-Ill-Defined-Low-Density-Mass-1.5cm x 4.4cm”

 

The other day I alluded to the fact that it might be post-surgical & post-treatment scarring or some kind of ‘settling out’ from all of the work I had done in the liver…including a badly botched needle biopsy of the liver.

 

I asked my onc what he thought it was…

 

They were crammed for time and already late for their on-call assignment over at the hospital, so this consult was more like a Wham-Bam encounter at the No-Tell Motel on your lunch hour:)

 

Bottom line?

 

He doesn’t really know…nothing conclusive…said he is not too concerned…

 

But then, he is not exactly an excitable fellow…and this isn’t exactly his cancer either…

 

I mean that’s a pretty big spot of ‘haziness.’  4cm is noticeable….my liver tumor was 8cm….and my last lung tumor was 6cm….

 

Really, doc?

 

That’s the best you can come up with for all of this damn money and time I’ve wasted this cycle?  Hell, I had this much diagnosed yesterday (for free). 

 

He hem-hawed and mumble-fkd his way through the shortened version…but didn’t say anything that was concrete or even speculative in nature. 

 

They just “Don’t Really Know…”

 

He could sense the concern that I was expressing and said he would see me again in 3-months and he ordered an MRI that I could do if I can afford it then.  He said if I could not do it, then to just cancel it.  He is aware of my financial situation.

 

And that’s going to be an important decision…

 

See, as a nearly 9-year veteran of cancer, I’ve often talked about treating your cancer ‘like a business.’  

 

Knee-jerk reactions cost us in so many ways…this happened to me right after SteveD in England did his hemi-pelvicectomy….my arm was numb from the shoulder down and my hands and fingers were trembling something fierce.

 

Because of the timing of Steve’s surgery, I got scared that they would have to amputate me up to my shoulder….so we did a PET….that knee jerk reaction cost me $1800 of real out of my own pocket money…I have it set up on an 18-month plan of $100 a month.

 

So, my panic set me back to 2015…and there have already been more scans that have been done….and many more to come…I’ll just never get out. 

 

Years ago when I came here, I opened a post about the cost of financial ruin the longer you find yourself in a cancer fight.  I’ve probably got 20-medical bills I’m paying on….1/2 of those went to collections that I’ve been trying to settle.

 

But, just those destroyed my credit…we found that our recently when we went for a loan we needed and they pulled up past cancer bills that had torpedoed a good credit record.

 

So, I have to be careful….I’ve got a few “Green” bullets, but not enough of them…I have to be careful when I decide to pull the trigger.

 

This got me into trouble before and actually ended me up in my last fight…cost me 3-years and nearly my life...

 

There are many components to fighting a cancer battle, but for the vast majority of us, we operate under the financial constraints of the insurance that we can barely afford – and even more to the truth – that we can barely afford TO USE.

 

So, the plan is to watch and wait…he’ll see me in 3-months and we’ll see if I do the MRI…if I don’t….then it would be CT in six-months at the next scheduled date.

 

I don’t know how I feel about all of this…

 

I’d be lying if I said it was not on my mind….quite a bit today obviously.  I’m not scared…my thoughts are just how hard I would have to work – just to get back where I am right now….and that’s a burdensome thought right now. 

 

But, I’ve got to have Faith and Trust here…

 

My onc doesn’t seem too worried…so I’ll try and follow his lead…

 

You know we all want to hear – what we want to hear…

 

And this visit just wasn’t conclusive – not thumbs up nor thumbs down…I guess we could sum it up by the Baseball Rule – “Tie Goes to the Runner…”  :)

 

So, here’s what we’re gonna’ do now…:)

 

No worries from any of you….all will be well with me…it’s a funny feeling…I don’t know how to feel…other than confused that we couldn’t identify or nail this thing down further.

 

But, I can’t worry on this incessantly…and I don’t want you to either…your hands are already so full…he didn’t say cancer…so I’m going to go with ‘still clear’….at the 21 month mark….

 

A little bit of air out of my tires today, but tomorrow I’ll have moved through this and moving forward with what I have to do. 

 

To be a long-term fighter….is to understand enough about cancer not to panic and come unglued when things don’t always appear to be what we hoped they would be. 

 

I think the next 3-months might tell us more…

 

And so, I’m tabling the discussion I wanted to have with this post (sorry Pete) until I can see how this plays itself out.  It can wait…

 

This is not the post that I had envisioned a couple of days ago…but, I wanted to let everyone know I was okay as I can be, so you wouldn’t worry incessantly.  Thank you all for your prayers and concern!  I sure appreciate you!

 

-Craig

«1

Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    Thanks for the info. I'm
    Thanks for the info. I'm sure many, like myself, have been waiting for your post. Pleased that the onc isn't worried. However, as you pointed out, it is not his cancer. I don't think it's cancer. It could be so many other things. If it is cancer, it should be an easy fix. At least all other areas are clear. Results could have been so much worse. I know you will process this and move forward without missing a beat. Congratulations on a good scan!

    Chels

    What about your CEA? Or is it a poor indicator for you?
  • janie1
    janie1 Member Posts: 753 Member
    Chelsea71 said:

    Thanks for the info. I'm
    Thanks for the info. I'm sure many, like myself, have been waiting for your post. Pleased that the onc isn't worried. However, as you pointed out, it is not his cancer. I don't think it's cancer. It could be so many other things. If it is cancer, it should be an easy fix. At least all other areas are clear. Results could have been so much worse. I know you will process this and move forward without missing a beat. Congratulations on a good scan!

    Chels

    What about your CEA? Or is it a poor indicator for you?

    Craig.....was your CEA low?
    Craig.....was your CEA low? An area that large would surely elevate that pretty good, unless it never was accurate for you.

    Thanks for the update. You'll be ok.....what a crazy day. Yes, the cancer business is in full-swing. I've noticed that too. Sometimes when I feel alone in this, I think it's almost the other way around. Seems like there's fewer who don't have the da*n disease.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Chelsea71 said:

    Thanks for the info. I'm
    Thanks for the info. I'm sure many, like myself, have been waiting for your post. Pleased that the onc isn't worried. However, as you pointed out, it is not his cancer. I don't think it's cancer. It could be so many other things. If it is cancer, it should be an easy fix. At least all other areas are clear. Results could have been so much worse. I know you will process this and move forward without missing a beat. Congratulations on a good scan!

    Chels

    What about your CEA? Or is it a poor indicator for you?

    Just Leavin' for Home, Chels:)

    Glad to let you off the hook:)

    Just got some of my blood work back....my CA19-9 has to be sent out to another lab...but CEA came in at 4.0....it has been trending upward in small increments the last 12 months or so....not panicked here....still under the norm.  CEA was valid with my liver....and totally invalid with my lungs...the marker meant nothing....I was down to 0.8 then and had a 6cm tumor squeezing the breath out of me in my chest cavity right by my spine...go figure, right?

    Most of the report was good....there was some good stuff in there...I was excited about one particular component...but just deflated a little bit to talk about it tonight....just got back in from doc you know....perhaps later in the post tomorrow or something. 

    But you know, Chels....that's a big area...why couldn't he tell me with certainty that it was just 'Residual Fallout?' That would have taken the anxiety out...but the answer is he just can't say that conclusively. 

    I'll just keep going forward and look at it again in 3 more months....

    Thank you for responding!  Keeping you and Steve close...Sundance can't be beat...next scan will be more defined I hope:)

    -Craig

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Hey, Sorry that was

    Hey, Sorry that was inconclusive, but it could be worse!  Quick question for you while I'm sitting here in traffic.  Why doesn't your insurance company pick up the cost of the MRI?

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Craig if you remember last

    Craig if you remember last April I pmed you freaking about something my scan showed on the top of my lung nut my onc wasn't concerned with it and said the next scan will tell us more about it. I calmed and let it play itself out. No changes in the last 2 scans. In fact it was recently explained to me it is on the outside of my lung and at the top which is not a place that colon cancer travels to. I had my surgeon look at the last scan to confirm.

    My point is you helped me out calmed me down.

    I have to believe that you are right for following your doctors lack of concern as was the case with me last year.

    I know it is not what you wanted to hear from the doctor nor was it what I wanted to hear from you. Just  another crappy part about this disease and the things we encounter as long term survivors.

    Keep the faith. I am always 100% behind.

    Jeff

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Oh boy, I hate this kind of stuff.

    Because I only do PET/CT scans, I have had so many false alarms over the last few years.  Most resolved on their own, a few turned out to be cancer and needed my surgeon to come in do the "resolving".  I hope this will turn out to be the kind that heads for the hills without having to send the sheriff out, but if not, I know you can face up to whatever lies in the future.  You're one tough dude, dude.  Hugs from AA

  • dmj101
    dmj101 Member Posts: 527 Member
    Positive energy and light coming to you>>>>

    Craig - I hate this business but it keeps me employed...

    I will be praying for you.. I have a scan this saturday and I just hate this stuff.. I am tired of it.. so tired..

    Love to you .. and hope you can find peace.

    Donna

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Positive thoughts, prayers

    Positive thoughts, prayers and hugs...hope the doctor is right in not being concerned!

  • maglets
    maglets Member Posts: 2,576 Member
    craig

    gosh I feel like such a goofball.....never any wise words....words of wisdom....hold on dear friend....so so sorry you are having to do the dance....I send you prayers and love and calm.....breathe breathe dearest Craig.....

    love you......mags

  • Varmint5
    Varmint5 Member Posts: 384 Member
    That's rotten

    Just rotten that you have to be kept in limbo like this. Apparently it didn't look enough like cancer for them to jump on it and declare it cancer, so hopefully that will be the case. Could you have another radiologist look at the scan? Would that do any good? Sure wish you'd gotten a more definitive answer, like "definitely NOT cancer." Hang in there, Craig. You are on top of this. We'll hang in there with you.

    Sandy

  • wolfen
    wolfen Member Posts: 1,324 Member
    Varmint5 said:

    That's rotten

    Just rotten that you have to be kept in limbo like this. Apparently it didn't look enough like cancer for them to jump on it and declare it cancer, so hopefully that will be the case. Could you have another radiologist look at the scan? Would that do any good? Sure wish you'd gotten a more definitive answer, like "definitely NOT cancer." Hang in there, Craig. You are on top of this. We'll hang in there with you.

    Sandy

    Well, Drat!

    I suppose this means I can't exhale that sigh of relief that I'm holding for another three months. What a croc and I don't mean the ones in Florida!

    I'll stow this info, as you will, in the far corners of my mind and bring it up later.

    I definitely don't think you got your money's worth out of this movie and should ask for a refund.

    Luv Ya,

    "Mama" Wolfen

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    come what may, your my inspiration

    prayers and smiles from germany.

    hugs,

    pete

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member

    come what may, your my inspiration

    prayers and smiles from germany.

    hugs,

    pete

    good luck

    Good luck, Craig. Love your graphics (ID Photo)Kiss

    Karin

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member

    come what may, your my inspiration

    prayers and smiles from germany.

    hugs,

    pete

    good luck

    Good luck, Craig. Love your graphics (ID Photo)Kiss

    Karin

  • PatchAdams
    PatchAdams Member Posts: 271
    I don't like this at all........

    I wouldn't want to wait another 3 months since this grew to this size quite quickly.  Dime sized by 3 dimes.  The smaller the better when it comes to curative intent.  

    Believe me, I understand the money concerns.  I still owe $6,000 from co pays and get collection calls daily and we have good insurance.  Now I have another PET in April. That'll add another $1,500 out of pocket....   

    I would insist on a PET.  

    Wishing you well, sir. 

  • johnnybegood
    johnnybegood Member Posts: 1,117 Member

    I don't like this at all........

    I wouldn't want to wait another 3 months since this grew to this size quite quickly.  Dime sized by 3 dimes.  The smaller the better when it comes to curative intent.  

    Believe me, I understand the money concerns.  I still owe $6,000 from co pays and get collection calls daily and we have good insurance.  Now I have another PET in April. That'll add another $1,500 out of pocket....   

    I would insist on a PET.  

    Wishing you well, sir. 

    sorry

    it turned out to be "one of those visits" i have had some of those.glad your trying to put it in the back of your mind but we all know how it always tries to creep back in.i guess thats how we have to learn how to live in these types of situations.for me i have learned just to lay it all at HIS feet,sometimes its hard but i am getting there...(((HUGS))) to you my friend and thanks for letting us know....Godbless....johnnybegood

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    "Slept It Off" - Update: Thur Mar7th

    The radiology doctor sent this reply through my doctor...and I picked it up:

    "I do not believe this is typical for a metastasis and favor this is post radiation change."

    This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

    1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

    2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

    3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

    I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

    I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

    What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

    I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

    The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

    I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

    I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

    Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

    CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

    I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

    If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

    June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

    At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

    I wanted to thank everyone who has commented. 

    RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

    I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

    They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

    I'm going to be OK...

    Say it with me..."He's going to be ok..."

    With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

    I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

    After nearly 9-years of this stuff....I'm tired, folks...

    And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

    Residual fallout really does sound like the answer here...

    Craig:  9-years in June and 21 months clear? with an asterick *.

    I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

    I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

    If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

    My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

    Thanks everyone!

    -Craig

     

     

     

  • Varmint5
    Varmint5 Member Posts: 384 Member
    Sundanceh said:

    "Slept It Off" - Update: Thur Mar7th

    The radiology doctor sent this reply through my doctor...and I picked it up:

    "I do not believe this is typical for a metastasis and favor this is post radiation change."

    This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

    1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

    2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

    3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

    I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

    I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

    What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

    I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

    The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

    I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

    I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

    Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

    CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

    I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

    If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

    June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

    At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

    I wanted to thank everyone who has commented. 

    RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

    I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

    They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

    I'm going to be OK...

    Say it with me..."He's going to be ok..."

    With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

    I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

    After nearly 9-years of this stuff....I'm tired, folks...

    And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

    Residual fallout really does sound like the answer here...

    Craig:  9-years in June and 21 months clear? with an asterick *.

    I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

    I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

    If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

    My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

    Thanks everyone!

    -Craig

     

     

     

    Whew!

    That's all I can say. Whew. So glad to hear this added piece of info. What a roller coaster! Hang in there, Craig.

    Sandy

  • lesvanb
    lesvanb Member Posts: 905
    Sundanceh said:

    "Slept It Off" - Update: Thur Mar7th

    The radiology doctor sent this reply through my doctor...and I picked it up:

    "I do not believe this is typical for a metastasis and favor this is post radiation change."

    This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

    1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

    2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

    3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

    I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

    I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

    What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

    I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

    The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

    I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

    I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

    Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

    CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

    I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

    If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

    June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

    At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

    I wanted to thank everyone who has commented. 

    RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

    I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

    They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

    I'm going to be OK...

    Say it with me..."He's going to be ok..."

    With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

    I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

    After nearly 9-years of this stuff....I'm tired, folks...

    And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

    Residual fallout really does sound like the answer here...

    Craig:  9-years in June and 21 months clear? with an asterick *.

    I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

    I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

    If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

    My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

    Thanks everyone!

    -Craig

     

     

     

    Hi Craig

    Ugh, what a lousy checkup. Hugs for you, my intrepid friend.

    I think your assessment here is good after hearing the radiologist's report. I've found those reports to be quite accurate. I also don't worry as much about my liver.

    Is your stage 1 fibrosis in your liver from radiation tx? I worry about that in my lungs, though worry never did help any situation.

    Here's to a good spring Craig!

    "Work when there is work to do. Rest when you are tired. One thing done in peace will most likely be better than ten things done in panic.. I am not a hero if I deny rest; I am only tired."  –Susan McHenry

    Ride on,

    Leslie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Sundanceh said:

    "Slept It Off" - Update: Thur Mar7th

    The radiology doctor sent this reply through my doctor...and I picked it up:

    "I do not believe this is typical for a metastasis and favor this is post radiation change."

    This helps lend some credence to the theory I was discussing yesterday...about the 'settling out' or the 'fallout' from all of the procedures I had done to my liver.

    1.  Badly botched liver biopsy resulting in a large bone bulging out of my ribs for over 5-years (recently it has recessed and is nearly flush)

    2.  RFA on the liver...burned out an 8cm tumor...size of a small orange.

    3. Cyberknife radiosurgery to treat the areas of the tumor that RFA could not reach. 

    I also had a fully opened abdoment when we did the RFA...we went in with liver resection as the goal and had to change plans.  Lots of scar tissue and residuals there...that was too much tumor to burn out, but we had no other options as the doctor concluded that the liver resect would have killed me in the O/R. 

    I also have fatty liver disease and stage I fibrosis in the liver...so I was fighting that and cancer in the liver at the same time.

    What was reported back was what I had originally thought...and my onc also said it could be residual...and that's why he said not to worry...but as with some things, they are not always definitive.

    I've also lost a little bit of weight...he thinks it's conceivable that the area was "hidden" from view and could have been there all along...and then the rad tech now sees it as "new" and reports it as such. 

    The thing about our bodies is that the trauma continues to evolve inside us long after the treatment has ended.  One of the first things I ever heard when I started from the beginning is the fallout and reprucussions from surgeries and treatments.....10 years after the fact....and even if you never did another thing past the original. 

    I haven't had cancer in the liver in 5-years now...it moved to lungs...and we stamped that out with two tries...I fear more lung recurrence...or the brain...that's where my real fear is...in the brain...it's the next stop in the colon train for me.

    I just can't see how it could appear that quickly...after 5-years removed from that area...and to be that big so quickly. 

    Maybe I lost enough fat that was helping to disguise a hazy area that's been there all along....and is a part of the past...and not a part of the present?

    CEA has trended upwards in very small increments....like .1 up every three month blood draw...it's now at 4.0...still in the norm range...I'm waiting on my CA19-9 results...that number had trended to the lowest ever just 3-months ago. 

    I'm not sick....I know it...this is a smoke screen...I feel too good to be sick right now.  I've watched my cancer double and double again when it went to my lungs. 

    If it is something, perhaps more definition will be revealed on the next scan...I'm sure I will have to revisit this in June and do at least an MRI...I really don't want to push out past that.

    June 2013 will be good timing...it will mark the 9-year mark since diagnosis. I hope to have good news to share.

    At least the radioligist let my onc and me know what their 'opinion' was...they don't feel it is a metastasis situation...I'm going to lean that way as well.

    I wanted to thank everyone who has commented. 

    RE: Patch, I'll be okay...it takes alot to rattle my cage:)  I didn't make it this far by accident:)

    I let a few words on the report dent my enthusiasm...it's a reminder of how strong that words can be...and how much of a hold they can have on us.  We're always held under such a tight grip...and I've got to use all of my experience and discernment to trust in my medical team that has played such a HUGE role in my longevity since I turned to them for my care almost 4-years ago in June. 

    They ARE the reason that I'm here today...my onc held my feet to the fire when I was last in treatment...he wouldn't budge...he wouldn't give...he pushed...I responded...and we won!

    I'm going to be OK...

    Say it with me..."He's going to be ok..."

    With all I've waded through, especially this last year in non-cancer related challenges, I just can't be dealt a setback...not now.

    I've decided to have my Spring...and nothing is going to stop me from having it...cancer or no cancer, I'm having Spring 2013...we're moving outside...firing up my bldg...and working on our property...the neglect is obvious and there is much hard work to do. 

    After nearly 9-years of this stuff....I'm tired, folks...

    And that was the same line that I used to the folks then when I first joined here back in 09...I'm even more tired now...and tired of all of it.

    Residual fallout really does sound like the answer here...

    Craig:  9-years in June and 21 months clear? with an asterick *.

    I slept it off last night...and feel okay about things today...I wanted assurance from that consult...and when I didn't get the exact word, it messed with me for the evening.  Best thing is to lay down and sleep it off...and then wake up the next day with the peace and comfort to be calm in my decision and move forward with my life.

    I'm wishing everyone well in your own personal situations and as you can see...it doesn't matter how many times you have to fight...or how many years either...the core roots of Fear and Trepidation will never leave you...the further along that you evolve as a long-term fighter, you simply learn when to shoulder that weapon - or when to pull that gun out of your holster and use it. 

    If my team were really concerned...I feel from the care that they have provided me, that they would say something if they really felt it was warranted. 

    My expectations were high of course...and they still are.  The next update post will be the bomb I'm sure of it. I'll be vindicated off the next one.  Just wait and see:)

    Thanks everyone!

    -Craig

     

     

     

    I am going to take that as a

    I am going to take that as a victory. A victory for yoh is a victory for ALL of us.