Confused by diagnosis

jhb50
jhb50 Member Posts: 1
in Colorectal Cancer #1
My 70 year old wife, who is in great physical condition with no apparent health problems, underwent surgery for an apparent umbilical hernia. (a lump near the navel).

The surgery and subsequent biopsy showed it to be a metastatic nodule in.on the omentum diagnosed as "metastatic adenocarcinoma, possibly colorectal primary site" based on CK20+ and CK7- markers.

A subsequent lower CAT scan showed "extensive peritoneal metastatic disease involving the greater omentum" and a 2.3x1.9cm liver lesion, as well as a blocked right ureter, which after hydronephesis determined the kidney is no longer functioning. A second upper Cat Scan showed a 6mm nodule in the lower left lung.

A subsequent colonostopy and endoscpy showed no colon or stomach problems, however subsequent CA125 and CEA showed elevated CA125 (214) and very elevated CEA(???).

Based on this result the oncologist has indicated that the cancer cannot be cured but that with chemo it can be arrested for some period of time, and he would use a colon cancer drug protocol. He stated that due to the progression to the lung and liver that an operation to remove the omentum would not be effective.

Our confusion stems from our inability to find any reference on Colon Cancer that presents without any evidence of a tumor in the colon.

The surgeon who performed the "hernia" repair and the colonostopy has indicated his opinion is "ovarian" despite these test results and the cat scan showing the "right ovary has an unusual appearance as it has a somewhat spiculated contour and is larger than the atrophic left ovary, however not as large as usually seen with a malignancy "

Can colon cancer exist without an apparent tumor on the colon? Any comments on this diagnosis and treatment plan would be appreciated.

Comments

  • Marianne313
    Marianne313 Member Posts: 124
    #2
    2nd opinion
    I would strongly recommend a second opinion, especially since it seems as though your oncologist is a bit confused (going on what you described).

    If your wife feels up to it please get a 2nd opinion...(I think I'd push for a 2nd opinion even if she resists a bit).

    good luck.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #3
    Marianne313 said:

    2nd opinion
    I would strongly recommend a second opinion, especially since it seems as though your oncologist is a bit confused (going on what you described).

    If your wife feels up to it please get a 2nd opinion...(I think I'd push for a 2nd opinion even if she resists a bit).

    good luck.

    I agree with Marianne !
    Everything looks confusing, Look for a second opinion in a major cancer center! SK, MD Andersons ,or so!
    Hugs!
  • John23
    John23 Member Posts: 2,122 Member
    #4
    Ditto the "second opinion"
    Let's go a step further, and get a few other opinions from
    qualified colorectal surgeons that are not of the same group
    or organization. I would put the oncologist's opinion aside
    until a few other colorectal surgeons weigh in.

    Misdiagnosing and applying the wrong chemicals, can be
    more harmful than doing absolutely nothing.

    Most cancers evolve and grow fairly slow, so unless there's
    an emergency situation (tumor about to obstruct a critical
    organ, etc), there is time to gather other opinions and hear
    other's diagnosis.

    The world is full of options, and it would be worthwhile to
    explore -all- options, including the alternatives to mainstream
    medicine.

    However........ you have to have an accurate diagnosis, and an
    accurate prognosis before exploring the alternatives. Alternatives
    work slowly, and you need to know just how far things have
    progressed; how much time you have to work with. If a tumor is
    about to kill you, you would want it removed, not treated with
    something that will take longer than you have; That's a "no-brainer".

    Chemo can work slow also, so get those other opinions without
    too much delay. And be cynical. Question all physician's opinions,
    and try not to put too much weight in any one physician.

    When you have more than one giving you the same general
    opinion, you can make plans.

    There's plenty of reason to worry, but don't allow that fear
    to drive you into an ally; you -always- have options!

    Best hopes and wishes,

    John
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #5
    Thought
    A friend of ours presented with extensive lymph node involvement and no colon tumors were found in two colonoscopies. Doctors were ready to dispense breast cancer chemo drugs despite high CEA values. A doctor at MSK (second opinion) requested third colonoscopy by MSK doctor who discovered originating tumor in the cecum (end of colon) which two previous doctors had skipped.

    I was under the impression that CEA could be linked to ovarian cancer as well as colon so perhaps diagnosis is correct. Second opinion at different office (preferably NCI center) would be in order.

    All the best to you and your wife,
    Amy
  • daBeachBum
    daBeachBum Member Posts: 164
    #6
    Hey JHB
    I'm sorry you find yourself here.

    I would also post this on the Peritoneal board. There are a few women with very similar stories there. I am a guy who has primary CRC with my secondary being in the Omentum.

    From what I can gather, Peritoneal cancer typically presents itself in women as a result of Ovarian cancer although it can be CRC related in some cases. My understanding is that the makeup of the omentum and ovary tissue is very similar. For men, peritoneal cancers are typically secondary to CRC (like mine). I did present with a sizable tumor outside my colon though.

    I can tell you that I have responded very well to the FOLFOX (CRC) regimen they put me on and also after they swapped Avastin for the Oxaliplatin. It shrank things in all areas and got rid of my ascites. This is a pretty strong indicator that all the cells are CRC related in my case. I saw immediate effects after starting the chemo and felt much! better and the ascites was gone by my second treatment. Perhaps it might be good to start with a CRC regimen and take careful note of how she looks and feels before and after the first few treatments. From what I can gather most CRC regimens are more benign than PPC regimens (she will likely keep her hair etc).

    It took my doctors a while to come to a conclusion on my cancer's origin. I was originally diagnosed with the classic Adenocarcinoma of Unknown Origin. My onc at Penn has as much as told me that the treatment plan they settled on for me was one of a few they were discussing many of which would have had no effect. In my case it was the right move.

    I hope this is helpful and I send loving and healing thoughts to your wife and you!

    Ray

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