New and Confused

Discussion Board Forums Introductions! New and Confused

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #57484
    pcl1029
    Member

    Hi,
    I think 2nd opinion from experienced liver surgeon,( eg Dr. Keto (NY) r. Chapman(St. Louise) or Dr.Brems(chicago) should be consulted
    The 2cm tumor is small in size and they can even burn it off;the lymph nodes can be taken out too. the systemic chemo to kill the rest of the cancer;
    Unless the 2cm tumor is attached to the vena cara, the portal vein or the main hepatic artery or firmly growing into the MAIN left or right hepatic vein that supply blood to the left and right side of the liver. Even so, under the doctor who like the challenges,this may be a good opportunity for them to do so since the size of the tumor is small.
    I do not think your brother telling you the whole thing or he is to sick to talk about.
    However,I will go for a 2nd opinion on interventional radiology consult on the possibility of qualified for IMRT(for small size tumor), radioembo(for large one) or chemoembo.if RFA cannot be done due to location.

    TIMING is everything for this disease .If the patient still having a chance for some procedure that is possible to save his life before it is too late to do so; I or we,as patients and caregivers should explore that option to the fullest before it is too late to do so. and I think that is one of the most important thing to get on this board,to tell about your situation and seek help appropriately; for each case is different.
    I hope I am wrong on this because I don’t have the scan result to look at ,:but if I am the patient; Not to seek other radiation and surgical opinions based on what the simple message said here will not be my choice.
    BTW,I am only a pattent who is having this CCA for almost 3 years.

    Talking on the web is good for knowing a lot of people supporting you;but the REALITY for treating this cancer is not by how much a person knows or;how much the emotional support we get ,It is by how much PLANNING and ACTION that we will prepare and follow through each step when situation changes for our love ones and us–the patient ourself.(all in all, it is both an emotional and educational ride;and the worse of it is there is no guaranteed even to prolong the quality of life .)
    God bless.

    #57483
    marions
    Moderator

    Imit…Thanks for clarifying. The physicians at the Norris Cancer Center are very familiar with this disease.
    Hoping for things to improve quickly.
    Please, keep us posted.
    Hugs and love,
    Marion

    #57482
    lmitchellsf
    Spectator

    Thank you all for your responses. I do believe that my brothers primary doctor is is at the Norris Center in Los Angeles, but not sure. I do know that initially he did go for 2nd and 3rd opinions about surgery but was told until the tumor shrunk they wouldn’t attempt it and also from the tumor there were tendrils that wrapped around several lymph nodes as well. I would welcome the names of any doctors in the Los Angeles area who are specialist in this cancer. As for infections, he’s always told that its from the stents and further complications come from the antibiotics killing his immune system. With exterior drain in place now maybe things will improve.

    #57481
    marions
    Moderator

    Imit….welcome. I don’t have much to add to the comments made by either, Percy, Lainy, and Pam, but I would like to emphasize that the problems your brother is experiencing are not uncommon to this disease. I would consider obtaining a second opinion from a center/physician treating a high volume of CC patients. Let us know if you need help with identifying such a place.
    A tidal wave of good wishes is heading your way.
    Hugs and love,
    Marion

    #57480
    lainy
    Spectator

    lmitchellsf, Welcome to our amazing family of couragous and caring people from all over the world. I am so sorry about your Mother and now your brother. Sometimes CC is very hard to diagnose but what bothers me is that with only a 2CM tumor and no METS, that they are taking such a final prognosis! My suggestion would be a second opinion and quickly. A patient should not be getting all these different infections! My husband had a problem producing urine and we called in a Urologist. Turns out the mass had pushed his right ureter closed. He had to have a stent put in the ureter and had no problem after that with the urine. Just a thought since I don’t know the location of the mass. Honestly from what you have posted I would just get him to another doctor and hospital for a second opinion. Sending you the best wishes and prayers and you are not alone in this, we are all here for you.

    #57479
    pamela
    Spectator

    You will not feel alone once you start voicing your feelings on this site. We are all family and are here to help any way we can. I am so sorry you have had to face such hard times with your family. It seems like too much for one person to bear. I will pray for you and your family. I know it is hard to watch someone with this cancer. I have a daughter who is 25 that was unlucky enough to be diagnosed with it. Doctors told us at first that she was having pain from bad posture and needed physical therapy. Many others on this site were not diagnosed for a long time after their symptoms first started. It is just so uncommon that doctors don’t even think of it. I am hoping for a miracle for your brother. Please take care and best of luck to you and your brothers.

    -Pam

    #57478
    pcl1029
    Member

    Hi,
    Since there is no metastasis to other parts of the body based on the PET; and it is only about 3month after the Dx. And based on you said his condition is stable.( is this result of no shrinkage based on CAT scan?) then did he has a surgical consult with the liver specialist and rule out resection?
    Get the scan report if you can .BTW, sepsis and c-diff and fungal infection in the hospital are not good signs . MRSA and pneumonia are the major problems and hopefully he can recover soon using those powerful antibics like Levaquin,Zosyn,Diflucan and Flagyl iv. Then after complete recovery, ask for 2nd opinion for the possibility of surgery to remove the tumor.
    Avoid Chinese herbal medicine since it may interfere with chemo therapy.
    God bless.

    #6332
    lmitchellsf
    Spectator

    In October 2011 my brother, who is 60, was diagnosed with intrahepatic CC, with tumor measuring nearly 2″, a PET scan showed no metastasis. The docs gave him 3 months to live and an option for chemo. It took 9 months to diagnose this condition after an MRI was done. He lost 9 precious months with doctors telling him it was everything from stress to allergies. His only symptom was abdominal pain. He started a chemo, and seeing a Chinese Master who put him on all kinds of Chinese herbal tonics. After the first round of chemo was done results was no shrinkage, but no growth either. That was also when he got his first infection and since has gone from one infection to another either from the stents migrating or producing bacteria, he is in and out of the hospital, and currently is in ICU with a bacterial infection. Just 2 days ago, doctors finally put an external drain in, his kidneys aren’t producing urine, his stomach is distended and he’s gone downhill so fast I don’t know that he’s going to recover. So far he’s had sepsis, a fungal infection, C-diff, thrush in mouth and lungs, numerous stent replacements and so on and so forth. I’m heading to where he lives (8 hr drive) tomorrow. Our mother just passed away two weeks ago and he was too sick to attend the funeral. Our other brother was too sick to come too due to a heart condition. There’s only me and two brothers left and now I’m losing one. I never knew a cancer to be so ravaging and so destructive. I’m so frustrated. This website is great and I know after reading so many posts that I’m not alone, yet I feel like I am.

Viewing 8 posts - 1 through 8 (of 8 total)
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