Here’s The Deal….Test Results Now In…

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

Before we begin, I just wanted to once again thank all of my friends here for their caring and compassion.  The outpouring of emotional support was incredible and I felt kind of guilty rattling everybody’s cage, before I had the answers in, but don’t think I could have bit my tongue for that long anyway with those type of thoughts swirling around in my head to keep me company. 

 

Thank you all very much for being there with me…

 

So, the onc walks in and asks me for my assessment of the situation…I told him it looked like new trouble, but the report wasn’t exactly definitive. 

 

But, from what I had gathered, I said we’re looking at a cluster of new activity in the liver in the hepatic dome - that measures 3.2 cm x 1.7cm….that wasn’t there on the last set of scans. 

 

I wanted to look at the scans this time….he asked me what happened with the MRI and I told him what had happened and that I tried to rescue the day by having the protocol changed to all CT – as it was better than nothing.

 

He concurred…

 

We looked at the new cluster of spots and sure enough, they are visible and you can see the change between the two scans as we had them up side-by-side.  The rising CEA was his trigger for concern here.

 

CEA for me seems to be valid for liver – and worthless when it comes to lungs…so the rise (while not sky high) was disconcerting for both of us.

 

But, he told me that still it was not definitive at what we were seeing…although he highly suspects – as do I – as many of you might as well…

 

So, I said, well then the next step must be more testing, right? 

 

Perhaps a PET, I suggested? 

 

And short of an MRI, he agreed with this approach….so, now we’re scheduled for a PET scan next Wednesday first thing in the morning.  I asked him if the difference between any SUV values would be indicative of anything? 

 

Like, if it was 2.8 or 7.2 as examples…..would this determine anything? He told me it would be either – Or……either a high value or no value…not much in between. 

 

Next, I asked him the next most logical question…is the area treatable without chemo?

 

I asked him about TACE as an option?  He said, yes they do chemoembolization there at my facility (good news)…..but felt, that the response was low there and not appropriate for my situation. 

 

We talked about Sir Spheres and Thereapheres…I can get those at my place too…

 

I asked about RFA again….and he said we’ve got to be very careful with my liver…I’ve got stage I fibrosis and have had all along….it’s the reason that liver resection got ruled out after they originally opened me up…..and had to switch over to RFA on the fly.

 

But, while RFA remains a possibility, we’d have to revisit it to see if I would qualify….he told me the quality of my liver might be further impaired by a procedure like this – this time. 

 

I believe he said my right lobe looked pretty good, but the left one….he’s not sure how I would deal with that potentially. 

 

So, I moved next to Cyberknife – what about that I said?  I had that done on the liver too and locally, it was a temporary success….would later recur….

 

And he said, Yes, this would probably be one of the proposed methods to deal with it.  And it would be SBRT radiation…..stereotactic. 

 

I took a minute to talk with him about presacral regions and T11 and T12 calcifications.  And I said this is where the radiation was done on me right?  (9-years ago).

 

Yep…

 

And that it’s part of the price we pay for trying to live…what I’ve said all along…the ramifications and fallouts from our treatments continue to dog and haunt us every year we make it. 

 

I told him I had been having increasing pain in the lower back and could no longer sleep in on weekends….the pain literally drives me out of bed, it hurts so badly. 

 

And I told him about my hips and the associated pain there….I’ve got Avascular Necrosis, which is joint death of the hips due to an inadequate amount of blood supply to those joints.  The primary reason being radiation – followed by chemo. 

 

I knew about the AVN, but got a confirm about how our bodies continue to change from the treatments we endure – and why we suffer so, if we are the fortunate ones to keep going. 

 

Radiation – the gift that keeps on giving – all of your dying days….

 

He said we’d deal with this new activity first – and then look at the back plan….somewhere I’m going to have to get that addressed…it is getting rather cumbersome and there are days I can barely climb into my clothes to get ready for work. 

 

Well, that’s about it, Gang…

 

PET next week…..he’ll call if he sees something….otherwise, the plan is to watch and wait a couple more months….and then we look at it then. 

 

I’m okay with that…..I know that if that kind of time made a real difference for my situation, I’d already be dead…that’s the confidence that I've had to develop.  We can't always be rushing headlong into things nilly and willy...with so many years in the fight, comes some degree of sage that we develop...and of course, we hope that we were right in our judgment. 

 

So, for now, I’ll just suck it up and wait to do the next test…..we might end up doing an MRI, but I stated it would have to be open if it were going to be that long. 

 

Wish I had more news to tell you….

 

We seem to live our lives in a constant state of Flux – and that’s what makes it so hard to live in the moment – and to try and plan for a future that you can’t see – but genuinely hope for. 

 

I’ve tried to break free from the gravity of cancer that keeps me so weighted down….and yet, I find that it keeps a perpetual stranglehold on me, as it keeps me tethered tightly on a string for its own personal amusement. 

 

Actually, I’m giving cancer too much credit…..the truth is that cancer couldn’t care one iota…now if only I could get to that state of mind myself. 

 

We’ll see what happens next…and thank you all ever so much – for everything!

 

-Craig

 

 

 

 

 

 

 

 

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Comments

  • karguy
    karguy Member Posts: 1,020
    Good luck

    Good luck with your treatments,you just have to keep on fighting like we all do just don't give up.I am haveing surgery tomorrow for a spinal tumor.I will keep you in my prayers.Good luck.

  • janderson1964
    janderson1964 Member Posts: 2,215
    I am truly sorry Craig to

    I am truly sorry Craig to hear this. I am there for you anyway I can be. t least you have options and thry are not rushing you into chemo. You are so incredibly important to so many of the folks here including me. I have to believe you still have a lot of years left in you. We need you here. I guess it is time to dust off your climbing gear. You are constantly in my thoughts and prayers and will continue to be.

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

    We are sending our thoughts

    We are sending our thoughts and prayers for a good treatment for you.  Keep up Living Life and positive thoughts.

     

    Best Always,   mike

    Well, My Friend!

    Not the best news nor the worst news. Just one more worry to tuck away for another week. It sounds like there are treatment options, though.  Stereotactic is supposed to be very good & precise.

    Now, about going to work naked................You finally figured out how to get back at them, didn't you?

    Luv Ya,

    "Mama"

  • barbebarb
    barbebarb Member Posts: 464

    I am truly sorry Craig to

    I am truly sorry Craig to hear this. I am there for you anyway I can be. t least you have options and thry are not rushing you into chemo. You are so incredibly important to so many of the folks here including me. I have to believe you still have a lot of years left in you. We need you here. I guess it is time to dust off your climbing gear. You are constantly in my thoughts and prayers and will continue to be.

    In your corner

    Hi Craig-I am so sorry to hear about this liver lesion, yet you have options! and many - so that is good......

    I will scan (combined PET and CAT) in August and learned that my tumor load is on the right side but they are still treating the left side because of the way the livers are against the right lobe or near it? and vena cava. I really feel I am at the right place for this treatment and my Int. Radiologist explains everything and takes his time. Didn't have that at N. Western....doesn't make my situation better but having some peace of mind with treatment plan from doctors does help me sleep better at night.

    We seem to live our lives in a constant state of Flux – and that’s what makes it so hard to live in the moment – and to try and plan for a future that you can’t see – but genuinely hope for. 

    I can totally relate to this statement. I know I am riding the tide with being "stable" but that isn't NED, yet is NED like being stable?, who knows, only the insidious cancer. Being sarcastic here.

    Once again, I hate to hear this has happened to you. I agree with Janderson, we need you here and you have certainly helped me with your insight/advice and so so many others. You have a vey special gift. You are in my prayers as all on this site and my other support group I attend monthly.

    My oncologist told me he wants me on Xeloda and Avastin, as maintainence, after scans. I just hate the thought of chemo again but know it is inevitable, as long, as I agree. Anyways, this is about special you and not me, but had to share.

    Sounds like you have many options and not so harsh as chemo can be for some.

    Barb

  • LivinginNH
    LivinginNH Member Posts: 1,456
     
    Well now, ain't that news a

     

    Well now, ain't that news a kicker.  :(   I guess it's time to bring out Big Billy my friend.  At least the doctor has a few options available, that's good news.  You can do it dear, the Lion will roar once again!

    Love ya,

    Cyn

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Crud....sorry for your
    Crud....sorry for your news...but it sounds like you have a plan and you will get through this once again.
  • maglets
    maglets Member Posts: 2,576
    jen2012 said:

    Crud....sorry for your
    Crud....sorry for your news...but it sounds like you have a plan and you will get through this once again.

    maybe

    maybe sometimes we just know too much....having been round too many times.  so so sorry Craig....having to start over is a great big drag.....hoping with all my heart you can just turn it down for a few whiles until you really know something more specific.....

    sending love......mags

  • annalexandria
    annalexandria Member Posts: 2,571
    This is hard news,

    but I'm glad to hear that there may still be some hope, whether in the form of "not cancer" or in the form of "cancer that can be treated".  I know (or at least I think I know) how hard this must be to accept, after being in remission for such a long stretch.  I have scans in August, and I'm all too aware that my own period of being NEDesque could be coming to an end.   These multiple recurrences are so disheatening.  But although three always seems to be the magic number, at least in all the best tales...who says number four won't be the one to do the trick in the tale of Sundanceh?  I firmly believe that you still have the chance to get to NED for good.  And we'll be right here, going along for the ride with you.  Sending a little Seattle strength your way~AA

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Craig

    I sure hate that you are having to get back on this rollercoaster.

    The answer that you got on the SUV of the PET scan sounds like all or nothing.  If wishing could make it so, it would be that the CT scan just got a pic that it didn't before and that SUV is nil then check again later.

    Sounds like you went into this appointment with all your options in mind. 

    No matter what, remember that we are all here for you and cheering you on.

    Hugs nd love,

    Marie who loves kitties

  • johnnybegood
    johnnybegood Member Posts: 1,117

    Dear Craig

    I sure hate that you are having to get back on this rollercoaster.

    The answer that you got on the SUV of the PET scan sounds like all or nothing.  If wishing could make it so, it would be that the CT scan just got a pic that it didn't before and that SUV is nil then check again later.

    Sounds like you went into this appointment with all your options in mind. 

    No matter what, remember that we are all here for you and cheering you on.

    Hugs nd love,

    Marie who loves kitties

    just dont

    know what to say as tears are streaming down my face....(((((HUGS))))) my dearest friend...Godbless...johnnybegood

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Well, I am relieved. It
    Well, I am relieved. It could have been worse. You know, to some extent, what you're dealing with. It appears to be in your liver only which means that they should be able to target it directly vs systemically. You're just going to have to dig down deep within yourself and muster whatever it takes to put this next chapter behind you. You set an example for people within this group and we rely on you. You will share your experience with people here (in your usual eloquent style) and we will support you every step of the way. I just wish you didn't have to go through it again....You don't deserve this. None of us do.

    Chels
  • jjaj133
    jjaj133 Member Posts: 867
    My dear friend,
    I am sending

    My dear friend,

    I am sending love, prayers and hugs your way.

    I am also thoroughly pissed off, so I am sending  strength and determination.

    Love you,

    Judy

  • LindaK.
    LindaK. Member Posts: 506 Member
    Chelsea71 said:

    Well, I am relieved. It
    Well, I am relieved. It could have been worse. You know, to some extent, what you're dealing with. It appears to be in your liver only which means that they should be able to target it directly vs systemically. You're just going to have to dig down deep within yourself and muster whatever it takes to put this next chapter behind you. You set an example for people within this group and we rely on you. You will share your experience with people here (in your usual eloquent style) and we will support you every step of the way. I just wish you didn't have to go through it again....You don't deserve this. None of us do.

    Chels

    Ditto

    What Chelsea said.  I was so anxious to hear about your appointment.  Sounds like you have a great onc and together you will develop a plan to deal with whatever is going on.  Thanks for the detailed update, I learn more from you each day  :-) 

    Linda

  • rogina2336
    rogina2336 Member Posts: 188
    Have you in my prayers. 

    Have you in my prayers.  Wolfen had a good idea there for the back pain.  Hugs and Prayers.  Kim

     

  • KathiM
    KathiM Member Posts: 8,028
    Sending BIG hugs!!!

    ...you are so eloquent!  And so much in control of your treatment plan...I am, as always, so impressed!!!

     

    As a fellow hip joint pain suffered...I want to share something that has worked for me.  It may not be for you, but, as you, I started feeling like I wanted to got to work naked....could not even raise my right leg without pain...and panty hose?  FORGET it!!!

    From my breast cancer, I won the osteoporosis 'prize'.  I am completely non-compliant with my Actonel (biphosphonate), and so my treatment plan was not followed...scared me with all of my peer group (year 5-10 warriors) starting to see reoccurs....so, my oncologist suggested ReClast.  This is also used to ride herd on bone mets, come to find out. 

    After a freak out walking into my treatment center after being gone awhile, I settled in to the infusion, with the only thing on board (the nurse had said the sides would, normally, at worst be like Neulasta...aches for 2 days...so she suggested Tylenol before we started) was Ibuprofen (my 'snake oil drug....use it for EVERYTHING!).  After 2 days, all symptoms gone.  And I thought "OK, I have my doubts, missy as far as treatment...but we shall see".  I am pleasantly surprised at one of the sides.....my HIP has gotten better!!!  I have not had a siatica 'session' (normally an every other day occur) for 2 WEEKS!!!

    Just a thought, dearest....don't know if it applies...

    Knuffels, my gentleman cowboy......Kathi

  • steved
    steved Member Posts: 834
    How quickly the tide turns

    You have been at this battle so long your responses now are so acadewise and wise  that I wonder where youremotions are at?  It fclose very close to home what you are describing and similarly foundnix want to knthat've facts and make the decIsions and just get on With it.  I do hear hope in your plans which is great and knowledge will take you a long way.

     My thoughts are wIth you, Just don'tforget this is a huge emotional challenge, not just a physical and academic one. 

    Steve

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Thank You, Everyone!

    I could have been a doctor, LOL!

    My onc humors me like he did the other day when he asked for my assessment...LOL!  I've always joked that it feels like two 'colleagues' discussing a patient case - only it's mine:)

    He doesn't patronize me though and seems interested in the theories that I bring him....and the stuff I've been able to tell him about on the board.  I think he enjoys hearing it.  Many of his patients probably don't provide much input

    (BTW, he did tell me that I was one 'on a very short list' of his patients who had survived 9-years or more. He said that was more important than the 2-year remissive streak....)

    The good news is that my facility looks like it handles many of the options out there...that's great news for cancer patients as I've said, we're an NCI facility now...and should be considered the MD Anderson of North Texas...I already know that we are:)

    Even with all of these options, there may be several unavailable to me due to the state of my liver...I've got NASH with stage I fibrosis, so the situation is somewhat tenuous on what approach we would take. He said we'd have to be very careful as we move forward here.

    What's interesting is that even when you have done something before....and then you can do it again....your body may not be able to deliver....as I've said, you can only beat this thing for so long - something has got to give.

    Liver resection (at this time) is absolutely not on the table...it wasn't good five years ago...and I can't imagine it improving....as everything does degenerate. 

    If I can clean up my liver....surgical resection might be a future option....

    RFA is possible, but that can be a pop to the liver...and the concern is would I be able to do one of those.....if I could qualify, that would probably be my first choice....my second choice would be SBRT as the targeted approach...doc seems to think we could get clear margins.

    I absolutely stressed to him that I do not want to fight a chemical battle...not even mop-up....what is that anyway?

    If you do recur 4x, what exactly are we mopping up? 

    I've learned as you get older in the battle, that you have to fight smarter - not harder.....

    Of course, he said we'll pull your spleen out and then you can do chemo...:) 

    For now, business as usual...

    I'll be interested to see what the PET results tell us...

    Have I ever told you that "Story Matters Here?"

    LOL!

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    karguy said:

    Good luck

    Good luck with your treatments,you just have to keep on fighting like we all do just don't give up.I am haveing surgery tomorrow for a spinal tumor.I will keep you in my prayers.Good luck.

    You can have my good luck, Karguy:)

    Best wishes with your surgery....let us know all about it when you can.  Will be understandably concerned for you.

    Hugs big guy!

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    KathiM said:

    Sending BIG hugs!!!

    ...you are so eloquent!  And so much in control of your treatment plan...I am, as always, so impressed!!!

     

    As a fellow hip joint pain suffered...I want to share something that has worked for me.  It may not be for you, but, as you, I started feeling like I wanted to got to work naked....could not even raise my right leg without pain...and panty hose?  FORGET it!!!

    From my breast cancer, I won the osteoporosis 'prize'.  I am completely non-compliant with my Actonel (biphosphonate), and so my treatment plan was not followed...scared me with all of my peer group (year 5-10 warriors) starting to see reoccurs....so, my oncologist suggested ReClast.  This is also used to ride herd on bone mets, come to find out. 

    After a freak out walking into my treatment center after being gone awhile, I settled in to the infusion, with the only thing on board (the nurse had said the sides would, normally, at worst be like Neulasta...aches for 2 days...so she suggested Tylenol before we started) was Ibuprofen (my 'snake oil drug....use it for EVERYTHING!).  After 2 days, all symptoms gone.  And I thought "OK, I have my doubts, missy as far as treatment...but we shall see".  I am pleasantly surprised at one of the sides.....my HIP has gotten better!!!  I have not had a siatica 'session' (normally an every other day occur) for 2 WEEKS!!!

    Just a thought, dearest....don't know if it applies...

    Knuffels, my gentleman cowboy......Kathi

    Hey Kat:)

    I will mention the ReClas to the onc and get his spin.....I'll research a little to get up to speed.

    AVN basically occured from a proper lack of blood flow, which resulted in partial joint death...it was stable three months ago, but they seem some subtle changes.  Even with no more treatment of any kind, it looks like deterioration will continue, albeit at a slower pace. 

    From the research I have done, hip replacements looks to be the only medical solution....and the T11 and T12 has eroded to the point that it's beginning to compromise me and make things much harder than they were. 

    I 'practice' yoga by just trying to bend over enough to tie my shoes...I've got to swing each leg up on the footrest of the bed and then bend over to tie them.  And you feel everything pull so tight, it feels like a rubber band about to snap in two. 

    It's to the point where I audibly moan if I have to pick something up off the ground.  Getting in and out of bed is an olympic event anymore. I have to be very careful how I move, some days it feels like the next step will be your last and you'll end up in a wheelchair...had that happen in a Walmart....and was trying to figure how to get out of that big store and back to the car without drawing unwanted attention. 

    I think that this points to the fact that just because we do or did something....and didn't really feel or notice it then....does not mean that we won't pay for it later on down the road.  After all, we can run, but we cannot hide. 

     One of the biggest challenges to the entire cancer experience is living past the prognosis we were given - and then if we do, how do we deal with the inevitable fallout?  As you know, one of the biggest keys is finding out how to manage our lives when all is said and done.....or not....

    Thank you for your suggestion and I will mention this to him to see if it would be an option that might apply for me....thank you for the info:) 

    Give my best to Beau:) 

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    maglets said:

    maybe

    maybe sometimes we just know too much....having been round too many times.  so so sorry Craig....having to start over is a great big drag.....hoping with all my heart you can just turn it down for a few whiles until you really know something more specific.....

    sending love......mags

    Maybe, Maggie...

    "Knowing" carries with it a certain sense of awareness that at times can feel crippling...and even suffocating...

    There are many times when I wish I didn't know anymore...

    The naivete stage of any endeavor are truly precious moments...for they carry with them that sense of newness and unawareness of what lies before them...which gives one the strength and courage to attempt something with no preconceived ideas of the pitfalls or the outcomes...

    I feel there is something there...it looked pretty evident to me...but we will flesh it out...and things will be alright. 

    It's business as usual for me...I'm planning the next steps and working on contingency plans for what may be coming up rather soon. 

    It's only (maybe) cancer.....and I'm still going to make my 10-years....you won't wanna' miss that one, my dear Canuck:)