Recovery
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I am interested in what you both have been posting. I had surgery Sept. 29th at Johns Hopkins and was told that there were clear margins and no lymph node involvement. All other pathology reports came back negative as far as spread to other organs. I, too, was told that no further treatment was necessary, but not because of the clear margins, but because my surgeon felt that chemo was not particularly effective. He did have me go to the oncologist who is working with a fairly new study of combining Gemzar and Zoloda and daily radiation for the final 5 1/2 weeks. I elected not to do it as there is not enough information out there to support going through that. My surgeon also said that in my situation with clear margins, etc. it still comes back in 50 % of the cases…not particularly encouraging. I go for my first CT Scan on January 24th and am keeping my fingers crossed. I’m trying to build up my immune system, reduce stress levels, am starting acupuncture, etc. It is definitely not an easy fight. I appreciate hearing what others have found helpful.
KathyHi Carollynn,
Early detection and surgery seem to be the only way to beat this evil cancer so your mother was very fortunate. And Mayo appears to be the expert with bile duct cancer – again very fortunate. May God continue to be present in your mother’s care and may He grant her peace in the middle of the storm.God Bless!
bobThank you Lainy and Gavin for your kind, welcoming posts.
Margaret–
Chemotherapy was originally discussed, but because the surgery went so well her oncologist says that chemo is not necessary. My parents have been returning the Mayo Clinic weekly, so I will share your story with my father. It sounds like you and your husband are strong, incredible people.Carollynn: Welcome to the site that no one really wants to join. Did your mom’s doctors suggest chemo? If not, ask why. My husband had a successful resection where they removed over 3/4’s of his liver and he had clear margins. That was in June 2008. We did question about Chemo, but the doc’s figured that since he had clear margins he did not need chemo. In hindsight and after many hours of research (on this site and on others) even with clear margins one should have a few rounds of chemo (to slow down any progression of the cancer and to kill off any stray cancer cells floating around).
My husband Tom’s new oncologist are saying that if he would have had chemo after his resection he may not be in the position he is in today. He presented with a new inoperable tumor in Nov. ’09, and his oncologist gave him 6 months. We did not accept that and sought 2nd, 3rd and 4th opinoins. Although they all agreed that the new tumor was inoperable, the disagreed with the no radiation, no chemo opinoin of the first oncologist.
He underwent 28 rounds of radiation and oral chemo. When his tumor markers started to climb, they started him on IV chemo (Gemzar and Cisplatin) and here we are today, just ready to start the 13th month of life since the oncologist told him he had 6 months.
I do not know what the future will bring, I don’t know how long Tom will be with me, but I do know that he does not have an expiration date stamped on his butt! Has it been a tough road? YES. Has it been worth it? YES. If we had to do it again, would we do it differently? YES, we would insist on some type of chemo, EVEN if they told us they had clear margins. Chemo will attack and kill off any stray cancer cells.
So my advice would be to ask all the question you can. Write them down because you will forget them otherwise. If your mom’s doctors don’t give you answers, ask them to research it and get back to you. Never take ‘no’ for an answer, instead ask what else can be tried or what else can you do.
Tom and I will be celebrating our tenth wedding anniversary on Feb. 11th 2011 and I just know that he will be here with me for that. And I’m hoping that your Mom will be with you for a long time to come!
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretHello Carollynn,
Welcome to the site. I am sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us here as you will get a load of support from us all. And thank you also for sharing your mums story with everyone, I know that this will be of help to many others.
I know what you mean about the emotional up’s and down’s of waiting for news froms scans, tests and stuff. This is tough to go through but unfortunately we all here have been there with that as well. You are also doing the right thing for your mum in seeking out information by coming here and I hope that you will keep coming back here and let us know how your mum is doing.
My best wishes to you and your mum,
Gavin
Dear Carollynn, Welcome to our wonderful family! That is a great story with Miracle results. Yes, it is a slow recovery but your Mother sounds like she is going to be fine and I would not be surprised if her Oncologist sets up a game plan for her to continue under his watchful eye. Early detection is the key here to good results. Please keep us posted on how she is doing and we are ready and set to help in any way we can.
My mother was diagnosed with Choloangiocarcinoma in late October when a 5 cm tumor began blocking her bile duct. She was told that this cancer is lethal as it is not usually detected until an advanced stage of growth at which point it has usually metastasized.
The finding of the first biopsy was that the tumor was benign, but one week later another tumor was discovered. My mother was treated at four hospitals and ultimately had surgery at the Mayo Clinic in Rochester, Minnesota, on November 29. During the surgery her liver was reduced, her bile duct was reconstructed, and her gall bladder and lymph nodes were removed.
The emotional ups and downs of waiting for test and treatment results (biopsies, CT scans, MRIs, surgery, etc) were difficult, and emotionally my mother is still grappling with the trauma of originally being told she was terminal, but she is expected to make a full, albeit slow, recovery.
I’m posting so others looking for online information related bile duct cancer, like my family and I did during the last weeks, may find hope. I wish everyone reading this strength and wellness.
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