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Thank you, I will look him up.
peony wrote:Janine, since you are in Ma, ct area you may want to consider taking a trip to NYC. My husband is going to be seeing Myron Schwartz and others have seen him as well. He has expericence with this type of cancer and very highly thought of. Good luck
PeonyHi Kelly, we had a second opinion with Dr Cha. He is in with Dr. Salem at Smilow. He was the one that told us it looks like CC. My mom started her chemo in december and is almost done with her first round. We go to Hartford Hospital Cancer Center. Dr Seigle is the oncologist. I would love to keep in touch with this to bounce things off each other. Thanks.
Kelly wrote:Janine, I am also in Connecticut. My mother was told this past Friday that it is likely cholangiocarcinoma. We have not yet had a biopsy done and will know more tomorrow about the next step we need to take. My general practicioner suggested Cancer Center of America in Philedelphia, however there seems to be a lot of people on this board with first had experience and knowledge so I will continue to “shop around” but we should keep each other informed as we are both in the same general area. I am looking in Smilow Cancer Center in New Haven now.We went to New Haven and the doctor there told us that depending if chemo helps then it may be possibly resected. We will know after her next scan. My mom is 65. I don’t know of a stage yet. Her currant oncologist said he does treat patients currently with cc. Thank you so much for your input.
Lainy wrote:Hello, Janine and welcome to our wonderful family, although I am so sorry you had to find us. We do have a Hospital site on our Discussion page which lists various tried and true hospital from our Members. Have the doctors ruled out Surgery? May I ask Mom’s age? Did the docotors give you a Stage? Please make sure they have treated CC before as many have not. You want to find someone familiar with CC. You may want to do a bit of reading up on CC as to be forarmed is to be ready. If you can give us a little more info that would be great and please keep us posted on Mom.Janine, since you are in Ma, ct area you may want to consider taking a trip to NYC. My husband is going to be seeing Myron Schwartz and others have seen him as well. He has expericence with this type of cancer and very highly thought of. Good luck
PeonyHi Janine,
Welcome to the site. Sorry to hear about your mum and I am sorry also that you had to find us all. But I am glad that you have joined us here as you will get a ton of support from everyone here. Here is a link that may be of use to you –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
It is the thread that Lainy talks of that was started by the members here who have shared their personal experiences of doctors and treatment centres that they were seen/treated at. And this may help as well, it is a list of major cancer centres in the USA.
http://www.cholangiocarcinoma.org/majorcancercenters.htm
My dad never had chemo, he had PDT as his treatment and he also had a metal stent inserted and this helped so much with his jaundice.
Please keep coming back here and let us know how your mum is doing. And feel free to ask a load of questions and we will help if we can.
My best wishes to you and your mum,
Gavin
Kelly & Janine – We looked into the Cancer Center of America when my son was diagnosed. Several of his doctors thought hospitals with funds from the State were better options. Just thought I’d mentioned this…..good luck to you both. – Nancy
Janine, I am also in Connecticut. My mother was told this past Friday that it is likely cholangiocarcinoma. We have not yet had a biopsy done and will know more tomorrow about the next step we need to take. My general practicioner suggested Cancer Center of America in Philedelphia, however there seems to be a lot of people on this board with first had experience and knowledge so I will continue to “shop around” but we should keep each other informed as we are both in the same general area. I am looking in Smilow Cancer Center in New Haven now.
Janine: Welcome to the best site for support, ideas, recommendations and FRIENDS!
You may want to avoid a ‘needle biopsy’ if at all possible, I have read on this site that if a needle biopsy is done, it may spead the cancer and also disqualify the patient IF a liver transplant could be an option. I would suggest a ‘brushing’ of the site instead….
My husband Tom just turned 64 and was diagnosed at age 61. His CC was found because of elevated liver enzymes and during his first ever ERCP the used the brush technique to get cells for biopsy, placed a stent and Cholangiocarcinoma was the diagnosis. Three months later he had a successful left liver lobe resection. He developed a bile leak and had drain tubes for 7 1/2 months. He was their star Cholangiocarcinoma patient. His ‘then’ doc’s did not feel chemo / radiation was necessary (Mistake) and 18 months late he started turning yellow. New inoperable tumor in the remaining right liver lobe. He was given 6 months, and 15 months later he is still here with me! He now has an external drain to drain the bile off so he is not quite so yellow. That dratted new tumor is blocking the flow of the bile and they are unable to place an internal stent. Doc’s also feel that between the tumor and the radiation the bile duct is destroyed.
My advice, in addition to the brushing for diagnosis, would be to do your homework, write down all your questions! Find a doctor who has dealt with CC before. When doc’s say ‘we can’t’ or ‘no’ ask what they ‘can do’ and ‘why not?’ (Never take no for an answer!) Mayo clinic, Rochester is an excellent choice for Cholangiocarcinoma patients.
You mom will need an advocate to be with her for all of the tests, etc. If possible bring a small digital tape recorder so you can tape all the meetings with the doctors. It is INVALUABLE! You can then listen to it ‘after the fact’ and it will help to hear it a 2nd or 3rd time. Ask questions because that doctor is working for your mom and you have the right to be fully informed.
Remember above all else, No one has an expiration date stamped on their butt!
Please come back to this site often and keep us informed on your mom!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hello, Janine and welcome to our wonderful family, although I am so sorry you had to find us. We do have a Hospital site on our Discussion page which lists various tried and true hospital from our Members. Have the doctors ruled out Surgery? May I ask Mom’s age? Did the docotors give you a Stage? Please make sure they have treated CC before as many have not. You want to find someone familiar with CC. You may want to do a bit of reading up on CC as to be forarmed is to be ready. If you can give us a little more info that would be great and please keep us posted on Mom.
Janine – I would think the doctors would want to perform a liver biopsy which will determine whether it is definitely cholangiocarcinoma. Check in the search box for Dana Farber or Mass General….perhaps that will lead you to comments about those hospitals.
Hello, this is my first time on a group discussion site. My mother was diagnosed in november with a liver tumor of an unknown GI origin. As she progressed with chemo she has had to have an ERCP with stent placement. The doctors are now saying that it looks like cholangiocarcinoma. Can anyone recommend what to do now. We are in the CT/MA area. Has anyone had good results with Dana Farber or Mass Gen? Any advice about the diagnosis or places for treatment are welcomed please.
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