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Thread: Out damned spot! Out I say!

  1. #1
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    Out damned spot! Out I say!

    [*** I'm using this thread as my story, which is why I continue posting to it ***]

    Back in mid-February (and again in mid-March), I had a CT scan to look at my surgical site. My surgical site looked good and it was eventually determined that the sources of my ongoing groin pain were a bladder infection and osteitis pubis (inflammation of the front joint of the pelvis). The CT scan did see something else -- a 9mm indeterminant lesion on my liver near the gall bladder fossa. The wacky term for this is an incidentaloma. The radiologist suggested a follow up MRI in 3-6 months to see if it could be more fully characterized. About a week and a half ago I had the MRI and here are the results:

    EXAMINATION: Abdominal MRI without and with contrast

    HISTORY: Liver lesion, <1cm, normal liver, no known malignancy

    TECHNIQUE: Multiplanar, multisequence images were obtained through the
    abdomen before and after the uneventful administration of 15 mL of
    ProHance gadolinium contrast according to routine protocol.

    COMPARISON: CT urogram performed 3/19/2019

    FINDINGS: Evaluation is degraded by respiratory motion artifact on the
    dynamic postcontrast images.

    Liver:

    Parenchyma: No evidence of hepatic steatosis. No evidence of
    cirrhosis.

    Focal lesions: An ill-defined T1 hypointense, hypoenhancing area in
    the periphery of segment five abutting the gallbladder fossa measuring
    approximately 11 mm in diameter with overlying capsular retraction and
    mild peripheral biliary ductal dilatation. There is subtle peripheral
    delayed enhancement, overall suspicious for an intrahepatic
    cholangiocarcinoma.

    No other focal lesions are identified..

    Vasculature: There is classic hepatic arterial anatomy. The hepatic
    veins are normal. The portal veins are normal.

    Biliary tree: Otherwise nondilated.

    Gallbladder: Normal.

    Spleen: Normal.

    Pancreas: Normal.

    Adrenal glands: Normal.

    Kidneys: Other than a few tiny cysts, the kidneys are normal.

    Additional findings: None significant.


    IMPRESSION:

    1. An 11 mm lesion in hepatic segment 5 suspicious for intrahepatic
    cholangiocarcinoma.

    Due to the lack of 100% specificity of MRIs, it could still be a benign something -- at least that's what I'm hoping. On July 9th, I will be getting laparoscopic surgery to remove my gall bladder and the small section of my liver that contains the lesion in order to get a pathologist's determination to answer the all important question: What is this thing? I've played through many "What if" scenarios in my mind and am now once againg trying to just relax until the surgery and the resultant pathology report.
    Last edited by farmanerd; 07-28-2019 at 04:00 AM.

  2. #2
    Here's hoping it's a nothingoma, farmanerd, or, at worst, something that was incidentally caught very very early and gone after surgery!

    Djin

  3. #3
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    With a 11 mm lesion and a <.1 PSA, I doubt it is prostate cancer.
    Last edited by Duck2; 06-29-2019 at 01:39 AM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  4. #4
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    Quote Originally Posted by DjinTonic View Post
    Here's hoping it's a nothingoma, farmanerd, or, at worst, something that was incidentally caught very very early and gone after surgery!

    Djin
    I would gladly take either of those results!
    Preferably the first! That's actually why the surgical oncologist recommended resection, since it is small to target for a biopsy and in some cases, the removal would be curative and prevent a second procedure if only biopsy had been done.

  5. #5
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    Quote Originally Posted by Duck2 View Post
    With a 11 mm lesion and a <.1 PSA, I doubt it is prostate cancer.
    I will admit that my biggest fear is PCA without PSA (neuroendocrine) -- not highly probable, but still seriously fear invoking given my Decipher score. I have chosen to undergo at least one session of counseling to address this probably irrational fear and to have the services in place in case of ANY adverse pathology results. Many thanks to FBs who have stated that counseling was good for them in similar situations. Darn ADT making my eyes water up again.
    Last edited by farmanerd; 06-29-2019 at 10:08 AM. Reason: Clarifying the fear

  6. #6
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    Quote Originally Posted by farmanerd View Post
    I will admit that my biggest fear is PCA without PSA (neuroendocrine) -- not highly probable, but still seriously fear invoking given my Decipher score. I have chosen to undergo at least one session of counseling to address this probably irrational fear and to have the services in place in case of ANY adverse pathology results. Many thanks to FBs who have stated that counseling was good for them in similar situations. Darn ADT making my eyes water up again.
    I don’t believe your fear is irrational. If you had said there was no fear, I would have stated you are nuts.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  7. #7
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    As a diversion, fear is, at its essence, a rational response. Thoughts generate fear. The question becomes can you manipulate your thoughts to dismiss the fear. In other words, rationalize your thoughts away. It requires identifing the automatic thoughts that generate the physical symptoms we think identify a fearful state.

    We collapse excitement into fear to avoid this conversation not wanting to accept we surrender our future to unresolved past experiences. The physiological responses are similar. Are we actually experiencing fear or, in a physical ( physics) sense, is it a heightened excitement ( energy) level? More often, it is the latter.

    There are infinite reasons to generate fear making it a very rational experience require rationalization to manage it. It's a mind drain and not a friend when going to battle. Fear fuels the flight instinct. A value in itself, but it doesn't work here.

    Another view of your experience of it is; new information has excited you in preparation for taking action. What you are experiencing is the outcome of your love of life and your integrity in your commitment to it. You are ramping up to go to battle, again. This isn't fear until you say it is. You get to choose. What I hear is a love of life and a commitment to it. Put your fear away for another day. You're not running away from this one. You are a proven and seasoned warrior.
    Last edited by Another; 06-29-2019 at 01:47 PM.

  8. #8
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    Quote Originally Posted by Another View Post
    As a diversion, fear is, at its essence, a rational response. Thoughts generate fear. The question becomes can you manipulate your thoughts to dismiss the fear. In other words, rationalize your thoughts away. It requires identifing the automatic thoughts that generate the physical symptoms we think identify a fearful state.

    We collapse excitement into fear to avoid this conversation not wanting to accept we surrender our future to unresolved past experiences. The physiological responses are similar. Are we actually experiencing fear or, in a physical ( physics) sense, is it a heightened excitement ( energy) level? More often, it is the latter.

    There are infinite reasons to generate fear making it a very rational experience require rationalization to manage it. It's a mind drain and not a friend when going to battle. Fear fuels the flight instinct. A value in itself, but it doesn't work here.

    Another view of your experience of it is; new information has excited you in preparation for taking action. What you are experiencing is the outcome of your love of life and your integrity in your commitment to it. You are ramping up to go to battle, again. This isn't fear until you say it is. You get to choose. What I hear is a love of life and a commitment to it. Put your fear away for another day. You're not running away from this one. You are a proven and seasoned warrior.
    Can’t argue with that line.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  9. #9
    Quote Originally Posted by farmanerd View Post
    ... the surgical oncologist recommended resection, since it is small to target for a biopsy and in some cases, the removal would be curative and prevent a second procedure if only biopsy had been done.
    Quote Originally Posted by farmanerd View Post
    I will admit that my biggest fear is PCA without PSA (neuroendocrine)...
    I had a somewhat similar experience last summer when a mass was incidentally discovered on a CT to investigate the possibility of pancreatitis. My gastroenterologist suggested that the stelate mesenteric mass was typical of a carcinoid or neuroendocrine tumor, as approx 40% of NET's originate in the small bowel mesentery. He referred me to a surgeon for a biopsy, but the surgeon said it would be too dangerous to attempt a biopsy due to entanglement with arteries.

    He recommended surgical excision, for the same reason you stated... that removing the mass would be the best way to determine it's exact nature, and that in most cases removal is also curative. And he stated that in 90% of cases he could do this laparoscopically, but due to the size of the mass, there was a one in three possibility that he may need to open me up.

    What followed was several months of preparing for the very real possibility that I would be unable to take anything by mouth for a full week, which required tapering off most medications and supplements. And I went into surgery just two days before Halloween not knowing if I would wake up with a cancer diagnosis and an ileostomy.

    I did a lot of research, familiarized myself with NET (which had killed both Steve Jobs and Aretha Franklin) and tried to reaearch a very rare condition called "sclerosing mesenteritis". I used the following chart as my "hit list" to try to guess the likelihood of each possible outcome... Solid Peritoneal Masses

    Had I not already faced several other cancers, I probably would have been going crazy. You got counseling? How did you get counselling? I couldn't even get information!

    Anyway, the surgery went well, and actually restored my faith in surgeons after the debacle that had been my AUS implant. The surgeon started a laproscope but did have to open me up due to the size of thr mass, which was a little smaller than a baseball. Left me with a nice 7" scar on my belly that looks like a cross. He said the mass did not look like cancer, and after another week the pathology stated that it was non malignant and "suggestive of sclerosing mesenteritis".

    Sorry to take so long, but be prepared for a roller coaster ride with your incidentaloma. Mine turned out very well (dispite some after effects) but I had been prepared for a far worse outcome. Good luck dealing with your curious condition.
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  10. #10
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    Quote Originally Posted by Another View Post
    As a diversion, fear is, at its essence, a rational response. Thoughts generate fear. The question becomes can you manipulate your thoughts to dismiss the fear. In other words, rationalize your thoughts away. It requires identifing the automatic thoughts that generate the physical symptoms we think identify a fearful state.

    We collapse excitement into fear to avoid this conversation not wanting to accept we surrender our future to unresolved past experiences. The physiological responses are similar. Are we actually experiencing fear or, in a physical ( physics) sense, is it a heightened excitement ( energy) level? More often, it is the latter.

    There are infinite reasons to generate fear making it a very rational experience require rationalization to manage it. It's a mind drain and not a friend when going to battle. Fear fuels the flight instinct. A value in itself, but it doesn't work here.

    Another view of your experience of it is; new information has excited you in preparation for taking action. What you are experiencing is the outcome of your love of life and your integrity in your commitment to it. You are ramping up to go to battle, again. This isn't fear until you say it is. You get to choose. What I hear is a love of life and a commitment to it. Put your fear away for another day. You're not running away from this one. You are a proven and seasoned warrior.
    Another,

    This was an amazing post -- I keep coming back and rereading it -- it has helped and continues to help me more than the counseling session that I had. It truly demonstrates the value of these forums. I'm glad that I learned to type in high school, since it's hard to see the keyboard through the happy, appreciative tears.

    Thank you!
    - Mark

 

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