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  • #82392

    Thanks to all. I will be looking at city of hope. We met with primary dr today and we are going to see if stents for the heart are possible. It seenms since the diagnosis that no one wants to touch her. They are pretty much writing her off and I am not going to let them. I am going to keep pushing back until I cant push any more or there is nothing to push for.

    #82391
    jelizpar
    Member

    We alsolive in the Inland Empire. My husband has Cholangiocarcinoma. We were told there were no specialists in this area to handle this cancer. We were referred to Dr. Rick Selby at USC but there are also others as many people have mentioned. The best to you and your family.

    #82390
    jelizpar
    Member
    sdlinriverside wrote:
    My mom has finally been diagnosed with CC. She presented with sever jaundice about nine months ago. Now from what I have read this disease is very aggressive and the doctors told me that there has been no change in the one spot they found. Size is the same and it has not spread. This does not make any since to me. She has a very good primary dr and he agrees with me. Nothing adds up.
    She had a biopsy done so we are pretty sure this is what she has. I still have to discuss with her primary doctor as to what the next step is. We know that surgery is not an option for her due to her medical history(3 strokes & needs triple bypass surgery) Is there anything I should be asking the doctor ? Any help would be greatly appreciated
    #82389
    yellow77rose
    Member

    My mom’s CC was slow growing. She is 3.5 years since diagnosis and up until the last few months has had a good quality of life.

    Good luck to your mom.

    #82388
    alisha
    Member

    hello all.

    #82387
    malinger2
    Participant

    Hello sdlinriverside. My husband was diagnosed at Riverside Medical Clinic and they immediately said that this was beyond their expertise so wanted to send him to UCI. We opted to go to City of Hope instead. He received the diagnosis on April 19 and he had surgery by the Chief of Surgery on May 2. City of Hope is incredible! Please look into going there if you can. Our doctor, Dr. Singh, is incredible and has the best bedside manner ever. Plus, Dr. Fong, from Sloane Kettering just came on board at COH. Every Thursday, a panel of 40 surgeons meet to discuss their cases. It’s like 40 second opinions. With my husband, his CA19-9 was normal, he had no symptoms and this was caught incidentally. Large tumor and satellite tumor were removed on the 2nd, leaving 45% of his liver. Recuperation has been ok, but he doesn’t drink enough water and had a couple bouts with dehydration, due to his insistence in walking at the Relay for Life, 15 days post surgery. What I’m trying to say is, although he had a quadruple bypass in the past, has two stents, diabetes and a stroke 1.5 years ago, they still decided to perform the resection surgery. They are aggressive in their treatment, and hopeful and positive in their outlook.
    I wish you the best in this new life journey. Please don’t settle for doctors who do not have the expertise to treat this very rare and complicated disease.
    Melinda

    #82386
    marions
    Moderator

    Please, keep us posted, dear sdlinriverside. We are in this together.
    Hugs,
    Marion

    #82385

    Hi Marion Yes the biopsy came back “malignant cells present Adenocarcinoma”. I am trying to get all the info I can before her next appt. so I can be very well informed. Thanks to all for the well wishes

    #82384
    iowagirl
    Member

    I have nothing to add to what the others have posted, other than you deserve a huge, huge hug for pressing doctors and advocating for your mom’s health. Blessings on you both.

    Julie t.

    #82383
    marions
    Moderator

    sdlinriverside….Like Lainy, I too would like to welcome you to our site. Your dear Mom is dealing with so many health issues that it will take some time to sort it all out. Has the biopsy confirmed it to be Cholangiocarcinoma?
    Some tumors are slow growing and in addition to the fact that small changes are not visible due to scan thickness etc. hence the it is considered “stable.” If indeed the tumor is cancerous, a consult with a radiology oncologist would be a good idea as well. It is of most importance for doctors involved in the care of your Mom to communicate amongst each other. This would include the cardiologist, radiation oncologist, surgeon, oncologist and her GP. Please keep us posted on the developments.
    Hugs,
    Marion

    #82382
    lainy
    Member

    Great, Joanna and please let us know the outcome.

    #82381

    yes I know. Taking care of her for over a year now has lead me to one conclusion, not all, but most doctors are idiots ! If it was not for me researching and making suggestions for her care I am positive she would not be with us right now. She is 71 soon to be 72. The good thing is that in that 9 months there has been no change and no spread to surrounding lymph nodes or tissue, she only has the one spot or stricture. After reading the news on aspirin I may have the drs put her back on it. they took her off of it for another actual blood thinner (she is on Plavix and xeralto). Maybe this is why there has been no change. I am also going to start giving her serrapeptase (natural product) for her blocked arteries but it has shown some good in cancer treatment it is also a good anti inflammatory.
    We will certainly be discussing, demanding :-) to see an ONC.

    Thanks again Joanna

    #82380
    lainy
    Member

    Wow! I am totally shocked that no DOCS have sent her to an ONC. Honestly there are still ONCs who have not dealt with CC. A Primary Doctor does not have the knowledge to treat CC. It is very rare and now I see why 9 months were wasted. How old is your Mom? Personally I cannot see them treating her CC if the Triple Bypass has be done first. I am really appalled that she was not sent to an ONC for the CC. In this 9 months she could have had some treatment. Again, wow, I really don’t know what to say as we have never had a situation like this one. I do wish her the best but I would run not walk to the nearest ONC even if she is not to be treated yet for the CC, she needs to be seen.

    #82379

    Thanks Lainey. She is not seeing an ONC yet. I just got the results a few days ago. We have an appt with her primary dr to discuss all of this and where to go next. Yes I know 9 months is a very long time. We are in Riverside, CA and I am going to get atleast a second opinion for her. She has had a very ruff time, that is why it has taken 9 months. She had what the drs call a moderate stroke in march 2013 and was recovering. After a while she had another minor stroke and then was hit with the jaundice, that is when they put in an external drain. From that point she was hospitalized several times for sever dehydration and another minor stroke. I finally got a dr to listen to me that the drain was causing the dehydration so he brought another GI dr on board and they placed a temp stent. From then on she was doing well and I was able to get her to uc Irvine for the biopsy. When they did the biopsy she wound up back in the hospital with an infection due to the procedure. It has been just one thing after another with her health. Since the diagnosis we are trying to make a decision on whether or not to put her through triple bypass surgery. As always any help is greatly appreciated

    #82378
    lainy
    Member

    Dear sdlinriveside, welcome to the best place to be for CC support. You mention a Primary Doctor but not an Oncologist. Is your Mother seeing an ONC? I am also wondering why it took 9 months for diagnosis. The first rules so to speak are to be with an ONC and Hospital that has treated quite a few CC patients and that we strongly suggest 2nd and 3rd opinions. May I ask where she is being treated? It does seem strange to me as well that after Jaundice it took 9 months. While it is sometimes very hard to diagnose that seems like a long time. I know it is late now but I know you will get some advise in the morning. I just wanted to welcome you to our remarkable family.

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