Prayer Request

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  • mountainhiker
    mountainhiker Member Posts: 54
    #22
    Twinzma said:

    I agree

    I don't think it's her ego as much as her inexperience and she is willing to refer us elsewhere. Upon leaving I told her he is going to be that miracle patient! I would love for him to goto MSK, but he is stubborn about his stupid job. A job that would replace him in 2 seconds flat! We used to have a branch MD anderson here in Orlando, but they broke ties with the hospital. I am hoping to find an agressive sugeon. nearby as that is all he is willing to go to. What really worries me is the stupid Colorectal Surgeon. SHE is the one who is playing God. To speak from a heptic point view is highly negligible. Once the MRI is done and the Genetic testing we are most certainlly going elsewhere. 

    Thank you so much for the article, I will send the link to my husband now.

    Men are like that

    I had similar feelings at the beginning about missing time from work, but it finally hit me that the job doesn't matter if I'm not around.  Didn't hurt that my pastor beat it into my head that my wife and 3 kids need me way more than they need to collect on a life insurance policy.  If you're close with your pastor, maybe he can help motivate your husband.

    Getting to a cancer center with great doctors who deal with this stuff all the time can make all the difference. 

    I'm typically a very reserved person - stay to myself for the most part.  But since receiving this diagnosis I'm talking to anyone willing to listen about getting checked and if they already have a diagnosis what I've done to get where I am today (and yes, I know it could come back any time but after being told I had 2 years at most I'm thrilled to be 1 1/2 years out, feeling great and cancer free).  I hope I'm not overstepping any boundaries, but if your husband would like to talk to another man in a similar situation I would be happy to do that over e-mail or phone.

    mountainhiker 

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #23
    I agree she should not be talking about surgery

    that’s not her field and honestly every liver surgeon will give different answers depending on experience and skill. Your husband reminds me of mine, work is every deciding factor in the choices he makes. I hope you are able to get a good second opinion. 

  • Twinzma
    Twinzma Member Posts: 236 Member
    #24
    Ruthmomto4 said:

    I agree she should not be talking about surgery

    that’s not her field and honestly every liver surgeon will give different answers depending on experience and skill. Your husband reminds me of mine, work is every deciding factor in the choices he makes. I hope you are able to get a good second opinion. 

    I just read up about her!

    OH HELL NO! She is only 40 years old, just finished another fellowship. I have nothing wrong with young doctors, but this one no way! 40 years old!?!!?! Yeah, not enough experience under her belt to be playing God let alone to even just give us any thoughts outside of her training. Funny thing is this young 'en has a wait list until November to get in! Oh my, I feel horribe for all the patients she see's who has advanced disease like my husband! I wonder how many are really surgical and she turns away. Now I rather not wonder, it will depress me too much!

     

  • betula
    betula Member Posts: 86
    #25
    Advocate

    Twinzma,

    Your husband is in good hands with you as his advocate!  Your husband sounds like mine in that to some degree he just puts his head down and tries to plow through this without looking around, researching or asking questions.  This is where we come in!  This researching, asking, questioning the doctors can be a confusing thing sometimes and I often wonder what happens to the patients who do not have someone in their corner questioning and researching. 

    Keep up the good work!

     

     

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    #26
    I think you're doing best

    I think you're doing best being a caregiver.  I don't have any input on the treatments but I'm continuing to pray and wishing you and your husband well.  (And yeah, find another surgeon--a good liver surgeon).

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #27
    Twinzma said:

    Update

    Thank you all for your prayers and for thinking of us. We got the results and.....I am just as stressed! The large tumor is still very active And as well as his liver. The surgeon however did not say no to surgery though. She asked that our oncologist run an MRI with contrast to see if there is enough shrinkage to safely rescect. What really irks me is this surgeon is not a heptic surgeron just a colorectal surgeon. She will refuse to do surgery if the liver has too much involovment, but how is she to know as the liver is NOT her specialty. In the meantime, they are stopping the infussion of Flofri after only 22 treatments and is putting him on a maintenace pill for now. There is not much tissue left in storage, but they are taking it to run genetic testing to hopefully find a more targeted therapy. 

    When I pressed more about the HAI pump, she said she is very familiar with it and does not recommend it to her patients as she believes the numbers are not accurate. HUH? Well that statement has made my husband lose interest in seeking the oppinion from the Dr I had set up for a second opinnion! I spoke up, I had enough I told her though I love her very much and feel that she is a wonderful doctor that he needs more aggressive treatment and that it is not within our city. She of course in turn said we needed to stay locally, as its best for our family and his work. She would refer us to Moffit if we wanted. I told her to wait. My husband will only go for one more opinion. His job is everything. He is so afraid to lose it. His health insurance is through them as well as his only life insurance for me and the boys. I really want to scream. His job is literally going to be the death of him! 

    So not knowing what to do, I will stand still right now as I have been taught. I can not make any rash decissions. I need to look into Moffiitt, Mayo (jacksonville) and Shands hospitals and see which has the most aggressive heptic surgeon there is.... Until then wait for yet another test. At leaast his disease is stable! So that I shall celebrate! 

    Again, thanks all for your continued support! 

    A Second Opinion

    All I'm thinking is a second opinion.  Just think about it and make him think about it as well.  I'm not sure how far Moffitt is from you but a job is not worth his life.  He needs to like about getting the best possible treatment.

    Kim

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