Newly diagnosed – Please HELP
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Hi Tansey,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us here as you will get a load of support and help from everyone. I can’t help you regarding doctors in the US as I am from the UK, but I wanted to stop by here and join the others in welcoming you here.
Please feel free to come here as much as you want and should you have any questions then ask away and we will all do what we can to help in answering any questions that you might have. Please keep us updated on how you are doing.
My best wishes to you,
Gavin
Hi Tansey…..Dana Farber is a major affiliate of Harvard Medical School and one of the top institutions in this country. Their medical opinion will be of high value. Additionally as you already are in Boston you might want to also contact Dr. Roger Jenkins Burlington, Mass. I believe it is less than 1 hour drive from Boston. Dr. Jenkins has extensive experience with this cancer and I strongly believe it to be worthwhile to obtain his opinion.
Dr. Roger Jenkins
Lahey Clinic
Burlington, Mass
(781) 744-2500
Julie Doyle
Administrator
All my best wishes,
MarionDear Tansey, welcome to our wonderful family but so sorry you had to join us. The Doctors are vague because this is a rare Cancer and unless they have treated CC before they just don’t know. First question to ask a Doctor should be, “have you treated CC before?” If not move on. On our Home page we have a Category called Hospitals and you may find some help there. I would also suggest that you re introduce yourself on the Introductions category as I am afraid you will get lost on this long mixed thread. I know more members will be chiming in on that site. You have come to the right place as we have the most caring people in the world right here. Please keep us posted.
Tansey, sorry you had to find us.
Tansey, what diagnostic procedures have you had to date (i.e. PET or CT scans, echos, ERCP, blood tests, etc.) While CC is rare, it isn’t that hard to nail for experienced people. Experience, however, is the key. I can’t speak for Dana Farber, but in NYC there are several good places (NY Presbyterian, Memorial Sloan Kettering, and Mt. Sinai.) I was a patient at NY Presbyterian several years ago and had a good outcome.
I hope you get a plan in place soon and hope for a good outcome for you.
Hi
I am also newly dx & have spent the last 5 weeks while they search for primary site.have a 4,6 cm mass in liver & 96% possibility of cc.have no swyptoms but have seen 2 medical oncologist who are now sending me to surgeons…everyone seems too vague for me..Return again to Dana farber tomorrow for surgical oncology apt we live in Fl & are now in Boston seeking 2nd opinion but seems there is no expert..help!Hi,djl888 and Jrr1610
please take a look at” cholangiocarcinoma -controversies and challenges” on the websites board here provided by Gavin if you have time.
I think it will provide you a better picture and understanding when you talk with the doctors
God bless.Dick, I can’t help with your medical questions, since my knowledge is limited to my own experiences. I never experienced any significant pain in my CC adventure, but Dr. Kato may have some thoughts. You are doing the right thing, as Dr. Kato will give you an honest opinion regarding possible options.
My thoughts are with you during this difficult time.
Welcome JRR to our wonderful family. I am so sorry your son is in so much pain and I am sure as a parent that pain is mirrored in your eyes. I have heard wonderful things about Dr. Kato. My husband never had pain in the beginning, he only jaundiced. I would think that a lot of it depends on what the CC may be sitting near. I hope you hear from Dr. Kato soon. Honestly, once a game plan is put in to place the fright will stop and the fight will begin. It’s all the uncertainty that puts us in a spin. Attitude is so important, try to be very strong and I am wishing for a successful talk with Dr. Kato. I know you will keep us informed.
jrr1610 – I think Dr. Kato is a wonderful choice from what I have read about him. The pain can definitely be caused by blockage of the bile duct. A stent to free the bile should probably be considered, but I am sure Dr. Kato will discuss all that with you. Unfortunately, some pain seems to be associated with this disease even with a stent in place. I am uncertain about your question regarding chemo but, again, I am sure Dr. Kato will have the correct answers for your questions. There are a lot of threads on this website that may be helpful if you try searching on them. You probably can find a lot of answers that way. Hope this helps and good wishes to you and your family – Nancy
I am father to new member djl888 so also father to her brother who was just diagnosed with CC stage IV. Thanks to her and this forum, the pathology report and back-up date are on their way to Dr. Kato for his review, 2nd opinion, and hopefully a conference with him. Neither Donna or I am willing to accept the initial conclusion that his tumor is inoperable.
Also, we are not going to start any chemo treatment until we are satisfied that the place of treatment is the best. Right now, he is recovering from laproscoptic surgery and also a tooth problem and all infection must first be ruled out.
My son has had pain for about 1 1/2 years, ranging from back (kidney area) to stomach to upper chest. It took that long to rule out all other organs, and tests to find the bile duct blockage. By then it had spread to the liver and peritoneum. Despite the blockage, he shows no sign of jaundice.
All drs so far have no explanation for the cause of pain. Does anyone have a clue? Would a stent or bypass to allow bile to flow normally have any beneficial effects? or relieve the pain? The pain killers he has been living on can be damaging.
If a liver resection or transplant IS an option via doctors like Kato, does chemo and/or radiation have to precede it to arrest growth?
Donna and family are flying blind here, and so we are grateful for your comments. Dick
Sitaram, please read the posts above. I also had a 10 x 10 cm inoperable tumor. However, I found a dr who is like none other, Tomoaki Kato. My tumor & 3/4 of my liver were removed. My left portal vein and vena cava were replaced by synthetic parts & my jugular vein. Lots of reconstruction, but it was successful. First of all, if you question statistics, you are placing yourself in a position to believe what you hear and then live, or allow your father to live for that suggested period of time. Don’t let others set the rules, make your own. No one really knows how long because the reality is cancer has a mind of its own. Rather than question, tell your father to continue fighting with all of his might. I never asked the drs what my time frame was. I knew the prognosis was grim, but rather I said “I will tell them how long I have”. And that’s just what I did. I am alive & well today. Regarding therasphere, when it comes to CC, everything is worth a chance, however, in order to truly set out for a cure, removing the tumor is the only true chance. Dr. Tomoaki Kato at Presbyterian Med Ctr in NY gives people with inoperable tumors an opportunity to become operable. He is unable to attempt surrgery for every patient, but I would certainly contact him to find out if your dad may be a surgical candidate. If he isn’t, then by all means try chemo or therasphere, whatever it takes to beat this. I am a firm believer in never giving up, so please don’t stop fighting for your dad. Without treatment, the cancer will do its best to take over. With treatment, you make it a little tougher for the cancer to win. Anything that can attempt to slow the progession of these cells is worth a try. Every day that your dad is on this earth brings the hope for a new treatment and a cure. Dont ever give up on hope. I am living proof of miracles. My true hope is to have many, many more people join that group. I will pray for you & your family. If I can help in any way, please do not hesitate to call upon me. My email is kcirucci@msn.com. Best to you.
Kim
My Father has been diag with intrahepatic Colangiocarcinoma of size 6cm by 6cm , poorly differentiated in seg iv B extending into the porta . there is mild dilation of intrahepatic bilary radicles. The dr has suggested therasphere. kindly guide. what is the life span without treatment ? & with treatment ?
Side effects my email naman_nirmal@rediffmail.comAnd Kim. Thanks also for sharing your story with us again. It and you truly are inspirational!
Best wishes,
Gavin
Donna,
I can’t add anything to what has been said to you already by the others, but I just wanted to welcome you here. I am glad that you have joined us as you have been given some excellent advice and it is great that you have been able to connect with Jim and Kim, and I so hope that your brother will be given some hope by what they and the others have said. Please let us know how he gets on with seeking other opinions and remember that we are all here for you. We know how you are feeling and what you are going through right now.
My best wishes to you and your brother,
Gavin
Donna..so sorry u are here with us..I’am a CC survivor and only because my angel Marc answered me on this website Dec 24th 2009..I was deemed inoperable by a very reputable cancer center in NYC..was having chemo with them..but did not feel like it was the end for me…I put myself out on this website..and was answered..my answer was a 2nd opinion with Dr Myron Schwartz at Mt. Sinai Hospital NYC .. 212-241-9049..you sound like a wonderful sister…please be a vigilant advocate for your brother…always have hope and never give up…ever forward…Nancy
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