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Thursday, May 30, 2013

one opinion, two opinion, three opinion?

I had a follow up apt with my surgeon today.  I asked her some questions and wasn't happy with the answers.  She shot down my theory of the cancer being in the ovary and being too big for the chemo to take care of it all.  She said that when I had my colon resection that the surgeon would have noticed if there was anything abnormal in the ovaries and that if there was anything microscopic the chemo should have taken care of it.  So this puts us back to believing that for whatever reason the cells in the ovary were resistent to the chemo.   We are still hoping that the chemo worked elsewhere but who knows.

I asked her if she has seen any cases where the colon cancer metastisized to the ovaries and then never showed up anywhere else again and she said no.  All the cases she has seen, the cancer showed up elsewhere.

I then met with my nurse navigator at my oncologists office.  She confirmed my suspicion that my oncologist has never seen a colon cancer ovarian metastisis; therefore, we are now looking for a 3rd opinion. 

Really wish someone could give us something concrete that would make us feel like there is something we can do that can guarantee something positive out of all of this.  No one can tell us that the other chemo would work or that the HIPEC will work.  It is not good news when your nurse cries with you at an appointment! 

My dad got me in touch with Cancer Treatment centers of America, the ones you hear advertised all the time.  I was skeptical of them but it turns out the hospital they have that takes our insurance doesn't even have a colorectal oncologist.  I have made 2 calls to Dr. Saltz at Sloan to see if there are any other oncologists out this way he can recommend, haven't heard back.  I also have a call into a colorectal oncologist in boston at women and brighams recommended by a family member to see if he has dealt with ovarian metastisis (waiting to hear back).

As much as I hate statistics its hard not to get depressed reading them when I'm doing my research.  People with colo-rectal cancer metastisis to ovaries or to (insert other long list of organs) are 55% more likely to get peritoneal carcinomatosis.  The survival for this is 5 to 13 months and thats after IV chemo.  Using HIPEC for early pertioneal carcinomatosis results in 48-63 month survival.  Of course this is one study but hard to not cringe at the numbers which is why I would want to do HIPEC but no one is talking about cures here, just prolonging life.  Hopefully doing HIPEC would prevent that from ever ocurring with me but no one can tell me that it will do that!  So why not be cut open and have poison poured all over your abdominal cavity at 110 degrees F knowing it might not do any good???

15 comments:

  1. Ugh. Wish anyone in the medical field had better news for you. Maybe these are the best options there are for now?? :/

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  2. Hopefully one of those two pending calls will lead you to someone that can give you the answers you are looking for. Keep your head up and keep taking a proactive part in your healthcare. You have the strength to do whatever it takes to beat this!

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  3. I tried to post yesterday but doesn't look like it worked. Hang in there Leah - you are so strong and will fight this, there isn't any other option. Keep making those phone calls until you can talk to a Dr who will talk about a cure! Love and Prayers - Katie Ouellette

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  4. Wish I had an answer for you. Harve

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  5. Love you and I am amazed by your strength. XOXOXO

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  6. That means that 45% of people are not getting peritoneal carcinomatosis, yay! Remember most people with this type of cancer are old. These statistics don't really apply to you, single-study or not, as you are not apart of the representative population just based on your age and health behaviors prior to the cancer.

    Stay strong. We're all cheering for you, those precious babies, and your husband :)

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  7. We continue to be amazed at your strength of spirit and what we use to call "moxie".it's a gift.

    J. Wall

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  8. Leah,
    Continuing to send you positive thoughts and heartfelt prayers from the North Country. Matt send his love and concern from afar. Keep hanging in there and being the amazing you that you are.
    ~Rebecca & Matt

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  9. Leah,
    Praying for peace and freedom from anxiety for you and your family.
    You are always in our thoughts and prayers. All the best to the kiddos and Bryan. You guys are awesome.

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  10. Leah...
    It has to be so consuming/confusing to have all these different opinions and stats. I agree with Anonymous that says "That means that 45% of people are not getting peritoneal carcinomatosis, yay!" You have always been so positive and strong through all this. Sending more/extra/ALL of my positive thoughts and energy to you and your family to get through these very tough decisions!!!
    See you soon!!
    Dawn


    Anonymous

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  11. Keep fighting, Leah! You are a strong and healthy person despite that cancer. You have a wonderful family to live for and your spirit to conquer is an intangible quality that doesn't factor in to statistics. I wish that i had half the strength and positive energy that you have. You have a lot of people rooting for you.

    Lots of Love to you,
    Missy

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  12. You know as well as anyone, how numbers can be "represented". I understand how staggering those figures are, Leah. Keep it in perspective that you are not the typical client, which I believe somebody else eluded to here!

    You are a YOU. Keep fighting and staying strong and positive!

    Sending love and strength and courage from CC.

    Much...Much....Love

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  13. My heart feels for you with all this info and decisions...
    keep pushing forward as you are with your questions and experience of the various doc's...
    I pray for some peace of mind of you soon, hugs & love, Coll

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