Extrahepatic CC cured???
- This topic has 9 replies, 8 voices, and was last updated 9 years, 8 months ago by
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Dear Pat, it is so good to see you again and YIPPEE on your 8 years, you are truly a HERO! You had great Doctors and a fabulous attitude! Please check in now and then and let us hear your good news as you give so much HOPE here and you are so right LIFE IS FOR THE LIVING so live it up!
Sharon, my name is Pat and I had a resection (60% removal) partial bile duct and gall bladder in January of 06′ at that time I was told chemo is ineffective against this cancer (intrahepatic) my tumor was small and fortunately I am eight and a half years past diagnosis. I was told by my oncologist this past spring that in the eyes of medicine I am cured, and at this point I am in the care of my gastroenterologist, who I see annually and who now will order follow up blood scans. For the record, my oncologist told me I am cured. It can happen, I have had the best years of my life since that surgery, and I am grateful and humbled with each new day. You will never feel “out of the woods” just live each day, each week, each month, and maybe each year as it is your last. It is the ultimate reason to do “what you always wanted to do” , and I mean as soon as you feel well enough, do what you always did and more, eat healthy and hopefully you will get the results you are praying for. I wish you great results, Pat
Hello, Sharon,
I had surgery 4 years ago at Johns Hopkins for a Klatskin tumor and was given the choice of chemo or no chemo. At the time my doctor said there was not enough evidence that it was effective. I decided against it. It was nerve -wracking to face that decision. Four years later I am so far clear. People who have had the chemo-radiation have had recurrences. People who did not have been cancer free and vice versa. It is a puzzle. I think every person’s situation is different and their doctors suggest different things. It makes the decision that much harder. It is a situation where you really don’t ever know and that’s what makes it hard to live with. In the end you have to do what feels right for you based on your research and doctor’s opinions. Good luck and keep us posted.
PS several years ago a man posted that he was 16 years from
His cancer surgery and his doctor still didn’t consider him out of the woods! It’s learning to live with that knowledge that is hard!Sharon…..Based on the thousands of postings on this site, patients staged I or stage II faired very well post resection. Good reason to stay positive. Although the majority of physicians recommend some type of adjuvant therapy, at this point we don’t have any clinical data supporting the benefit of such. We are awaiting the results of the BILCAP trial (UK) xeloda vs. no Xeloda post resection, which should be released within the next few weeks.
Good luck with your decision.
Hugs,
MarionSharon,
I love to read the words successful resection, this is wonderful news. I had chemo after both of my resections but my tumors responded better to radiation than chemo. Everyone is different and only you know what is best for your body. I would recommend a second opinion and also that your medical team is running blood work every 8 weeks and scans every 12 weeks.
LisaDearest Sharon –
Glad that you found us here and that you come bearing good news….successful resection is the best you can here. And to answer your question you can be cancer free. My husband was diagnosed in May 2013 with extrahepatic cc (Klatskin’s tumor) and had a resection in June 2013, second set of margins were clear but he had a positive lymph node so he was stage IIIb and a year later he is cancer-free. He had 6 months of adjuvant chemo Gemcitiabine/Oxaliplatin and a two month break then 6 weeks of chemo and radiation (5-FU and IMRT) His last scan in June were clear and the doc expects them to stay that way.That being said it was not without it ups and downs. 14 hours of surgery, 4 hospitalizations total, weight loss of over 80# all together, having to do IV fluids at home. Was it worth it? Yes I believe it was for him.
Everyone has the chemo to not chemo question. I am sure other will answer but it is a frequent question on here. If you go to the heading you will find a search tab and in that you can search specific topics such as this.
Good luck and keep us posted.
KrisV
My husband’s tumor was in the bile duct between the pancreas and the liver The pancreas was not involved. Originally they thought he had clear margins to the liver, but the pathology report showed cancer cells near the liver. This is where the radiation was targeted. Now that the radiation is over, our oncologist offered the option of chemo. Her statement was that research hasn’t really shown that chemo would be effective to keep cancer from returning. She felt if the cancer returned, it would most likely be in the liver, and they would be able to surgically treat the cancer. We want to make the best decision regarding this cancer. Our original thought was to say no the chemo (we could always change that later if circumstances change)–but now we are rethinking that.
I appreciate any feedback and thoughts. I realize that this is a very personal decision, and ultimately we will have to make the final decision, and it helps to hear the experiences of others and choices that have been made. I definitely agree that a second opinion is needed.
We are in the Madison area and going to UW Hospital for treatment.
Hello Sharon and welcome to the best place to be for CC. Congratulations on your husbands successful surgery, as you know surgery is one of our favorite words. My husband had a Whipple like Randi however, 4 ONCs/Radmen, said no to chemo as they felt it would not help him. What kind of surgery did your husband have. I hope the ONC is following up with him every 3 months as that is almost always the protocol after surgery. With that said, I would gather all his reports and LABS and Scans (copies) and get a second opinion. That way you will never have to second guess and will have no regrets. BTW I am from Milwaukee and my Teddy was treated at Columbia Hospital by a Dr. Lyle Henry who was only 1 of 2 doing Whipples 8 years ago. I live in Phoenix but we were visiting our kids then and Teddy became Jaundice and our 2 week trip turned in to almost 3 months. So I would say get another opinion as with a rarity like CC most ONCS would encourage it. Please keep us updated on your husband as we truly care.
Hello Sharon and congratulations on your husband’s successful resection! Some doctors will say when they have completed surgery and had clean margins that the cancer is “gone.” No one can truly say that cancer is cured because it can be microscopic, but at different points you can be cancer free and that may hopefully be forever.
I chose to have chemo after successful Whipple surgery for extrahepatic cc. I did not do radiation. This is all such a personal decision for each one of us to make. I wanted to do the chemo even tho they couldn’t tell me it did anything because they told me it was very “tolerable chemo: and I wanted to do the things I could. I didn’t do radiation for personal reasons that I won’t go into here.
My best advice is to get all the information you can, read what you can, and make your decision. Once your decision is made, don’t second guess yourself because it will do no good and will only cause you distress.
Best wishes for you and your husband and whatever decisions you make are the right ones for you.
-Randi-
First of all, I have been reading the discussion boards for several months, and have found the information extremely useful! Thanks to all who are participating and sharing their CC stories.
My husband was diagnosed with extrahepatic CC in February of this year. He had several bile ducts stent failures, but had a successful resection in late March. The pathology reports showed cancer cells near his liver, lymph nodes, and was categorized with N2 cancer. He was scheduled for 5 weeks of radiation and low dose chemo. He completed this treatment three weeks ago. We met with his oncologist today. She claimed that he is currently cancer free. Is this possible?? As much as I hope it is, I find it difficult to believe that he can go from stage N2 cancer, to cancer free simply by having surgery and radiation. I want to believe this is true, but am afraid to get my hopes up–these last several months have been a real roller coaster with many trips to the ER, and too many hospital stays due to complications. He is also being given the option of chemo, but his doctor stated that she wasn’t sure if it would be beneficial. We are now faced with making decisions, and I am afraid of taking the wrong path. Any insight would be appreciated.
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