Chemo, No Chemo…that is the question
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Hi Kirsten,
Im new to this site as well, but not as new as you to the cancer. My father was diagnosed July 07, like your father, he was able to have the tumor taken out, he had the whipple. He had no spreadage to any other organs, 5 out of 9 lymphnodes, which were clear, no metastasis, clear marginss, so we were pleased. Oncologist remcomended Gemzar for 6 months as a precaution, b/c this particular Oncologist gave us some statistic that CC returns usually within 1 to 4 years. In March of of 08 after my dad finished the Gemzar “suspicious” spots were found on my fathers lungs(2 in left lung, 1 in right). They grew a bit by June, and then a bit more by August.(still under 1 cm) The Radiologist, and Pulminologist seem to think the spots are cancer, and the Oncologist is fairly sure. Pulminologist and Oncologist have determined if it is cancer, they don’t have any treatment for the mets. This particular cancer team does not believe chemo or radiation will eliminate the tumors or slow the growth, and told me he had a survival stat of 4-6 months. We are allready going to another hospital that treats lung mets from CC. WE have had one appointment last Thursday, and go Tuesday for a Cat and Pet test, I will keep you posted. (Lainy is being super positive that the growth are not cancer- I like the way she thinks)
However, on the topic of your dad, all I can say, at the risk of sounding negative, there is no rhyme or reason to this cancer, or to the effect any treatment has on any one person. Why ones persons cancer doesn’t ever return, or returns in 6 months is anyones guess- one Oncologist(liver specialist) once told me, a lot of it is luck. So I will keep you posted, if my fathers cancer returned, it will have returned after gemzar chemo, and in less than 9 months, after a successful whipple.
If you decide against any treatment, I personally would have your father engage in a aggressive health program – from suplements, organic diet, excercise.
I hope I am not sounding negative, it is just that we have has such a rollercoaster ride with this cancer….
I send a note after Tuesday.
BarbaraKristen… Just my personal opinion. 70 years old, Surgeon’s very confident of clear margins, Chemo known absolutely to be toxic and could have adverse reaction including death. Its not any safer than any other chemo but we take it because we are in a life threatoning condition and have no choice. Is he a real healthy 70 year old or is there other questionable issues? As we all get older ( the normal aging process our bodies find it more difficult to fight off illnesses and infections. Right now looking at it at face value; he is now healthy why compromise it. I’ve been through enough chemo regimens that I lost count. I would say think on the positive side in (my opinion) and monitor. If chemo will work, it will work then( if it returns) as much as now if it were present. I chose to wait almost 6 years post resection and glad I did, as Gemzar did not work for me. I had a wonderful unresstricted life for 6 years. It started going down hill when I started Chemo. Why compromise his immune system now. Let him recover and let his own immune system prepare in case of a return. If you do chemo now then his immune system is weakened automatically, maybe giving recurrence an opportunity to return or return sooner. Tough Family and Individual decsion! You’ll have to go on your gut feelings as there is no sure thing either way. Weigh the pros and cons. will it work for me or not. Read the fine print of your chemo patients advisory. God’s strenght for you all.
God Bless,
JeffKristin, I don’t want to be the bearer of bad news but I believe in shooting straight from the hip, so that we know what we are working with. We have dealt with the following doctors: 2 Oncology Surgeons, Director of Liver Transplants at St. Joseph Hospital in Phoenix, An Oncology Radiologist, 3 other Oncologists and all of them have said: Bile Duct Cancer or Cholangio Carcinoma will return at some point, that is the nature of the beast. Teddy was totally clear of cancer after the Whipple and it returned 3 years later. All of these doctors have also said that chemo at this point in time will not do the job. We have a new aggressive ONC and met with him Friday and he said there is a newer chemo but it only helps 1 out of 5 for a time. They all feel that radiation or cyber knife (if it can be done) do much better for this type of cancer. So, with Teddy being 76 (73 when we started) and being able to get on the way these doctors all prefer, we have opted not to have chemo, ever. Teddy has been through so much I would never subject him to something that will make him very sick and probably will not work. When we went to the Director of Liver Transplants in June (he saw us as a courtesy as Teddy does not have it in the liver but this doc has done Whipples) he said if Teddy was his father he would never give him chemo for this. Again, everyone is different but you asked why we would not do chemo. All of our doctors and most everyone I have talked with feel there is no cure for this cancer. If you are lucky like Teddy has been you still must be watched every 2 – 3months along with LAB work and a CT Scan every 6 months. This way we were able to catch the return very quickly. It is a nightmare, a monster and you learn to live with by it’s rules!!! But no one has said ever to stop fighting! I don’t mean to be negative I am trying to be realistically optimistic!
Kirsten
Yes, there are people cured of this with just surgery…it is the ONLY cure for CC. There was a recent discussion of this if you go into the search mode on the site. I don’t have any statistics in front of me right now but I was given a cure rate of 70% given my specific circumstances, and that was by the oncologist who is not known for being overly optimistic! That being said, every one’s situation is so different that it makes it difficult to generalize e.g. presence of perineural or vascular invasion and grade (poorly vs moderately differentiated). What looks the same on the surface may be not the same at all!
Thanks for the advice from all of you. I hate being part of this club, as Lainy said, but I am thankful to have such great voices of experience to lean on as my dad goes through this. This sucks….let there be no doubt. Even when the news is good, it is hard to feel “lucky”, as we all know how unpredictable this cancer can be.
Lainy, if I may ask, what made the two of you decide on NO CHEMO?
Our family is kind of torn. My gut instinct is the same as Walk wrote…to try it and if he doesn’t tolerate it well, then stop. His oncologist told us that this is generally a well tolerated chemo and the regimen would likely be once weekly IV treatments, three weeks on, followed by a week off, for 6 months. He said that dad would need to be monitored so that he doesn’t become suseptable to other sicknesses through this process. On the other hand, one of the beliefs I have is that as people age, their immune system cannot regulate invaders as well….hence, things like cancer cells get through all of the protective machinery which is supposed to be in place. If this is the case, I sure wouldn’t want to see his immune system be compromised any more than necessary. My brother feels that this would be the case and is voting against chemotherapy. Gosh….I just have such fear that we might be sorry later. Aughhh.
Have any of you ever heard of ANYONE who has successful surgery and NEVER had any follow up therapies and NEVER had a recurrence? Is that even possible, or are we being too optimistic?
Welcome Kirsten!
I’m very glad to hear that your father has recovered so well from the surgery and has been given such a favorable prognosis…that is wonderful news!
I think it is just a very difficult decision because there are so few good studies regarding CC and every one’s circumstances are so different. My situation was very similar to your fathers. The tumor was found incidental to a workup for gallbladder problems. I had surgery in May of this year and about half of my liver was resected. The tumor was 3x3x2 cm with negative margins of 3cm and all negative lymph nodes. So, very similar to your fathers situation. It was recommended that I not have chemo by the surgeon and medical oncologist. The chemo does have risks, immune suppression, bone marrow suppression, infections, sepsis and side effects specific to the drugs being given. In any case, it’s a balance of risk versus benefit. And, again, the lack of adequate studies specific to CC makes the decision very difficult.
I just think that there’s not a clear answer on this and that makes it so very difficult. Maybe a second opinion is in order?
I am wishing the very best for your dad and your family and am hoping that, with enough information, that the decision becomes clear. There are some others on the forum that also have similar circumstances, Kris and Sue come to mind, and they may be able to give their take on this.
Again, welcome and please ask any questions as they come up…I have found this to be a wonderful group of people who are so willing to share and give support.
Jean
My father had colon cancer and his surgery was as successful as your father’s. He did follow up with chemo for a year and had no side effects. He has been cancer free for 13 years until his CC diagnosis two weeks ago, which is NOT a return of the colon cancer.
My thought would be to try it. If he doesn’t tolerate it well, then stop. If he does, is there any harm? (I know weakened immune system, but I am not sure if there are others?)Hi Kirsten and welcome to the best little club in the world that no one wishes to join! My husband, Teddy had a Whipple 3 years ago and it was totally contained in the bile duct valve. (See my other posts). He too had clean margins etc. The surgeon, and 4 other Oncologists all advised no chemo. This CC is a monster and all we know for sure is it will return somewhere. Sure enough after 3 years Teddy’s returned is where the duodenum used to be. He had radiation (chemo generally does not always work ) and is now going for cyber knife mid December to get the rest of the little devil out! Again he is lucky to have nothing anywhere else. The only thing we all know is that one must be watched very carefully the rest of their lives. Teddy is 76. The prognosis is again a good one as he just had a PET Scan. After the Cyber Knife he will go to the ONC every 2 months and have LAB work every month. After weighing all the pros and cons we have opted for NO Chemo! Everyone is different and unique and I am sure you will get some more valuable advise here as we have many wonderful and knowledgeable people on this board! Good luck and it sounds like you are in a very good position!
Hi Kirsten,
Welcome to our world. You have come to the right place. Everyone here is so supportive & knowledgeable. It sounds as if your Dad’s situation is very positive. As you probably know if you have been reading some of the postings, this cancer treats everyone differently. It is hard to predict or know what direction it will follow. From everything you have said, my own opinion would be not to do follow up chemo, but that is just my opinion. I am not a doctor nor do I have personal experience on this subject as chemo was not an option in our case. There are many others on this site who can probably be of more help to you & your Dad in making this decision as they have been through it. I am sure you will be hearing from some of them soon. Everything about your Dad’s situation does seem to be in his favor. Wish I could be of more help, but I wanted to atleast welcome you to the site & let you know that we are all here to help as best we can. Come back often & ask what ever is on your mind. There will always be someone that can help answer you questions & give you strength & support when it is needed. Wishing you & your Dad the best.
Darla
My dad was diagnosed with CC in the early part of September and underwent resection surgery at the Mayo Clinic in Rochester on October 2, 2008. Surgery went extremely well. The tumor was caught in the very early stages, smack dab in the middle of the common bile duct. His surgeon, Dr. Farnell, said that he didn’t remember the last time he had seen a tumor in such a good location for resection and was confident that he had removed all of the cancer. He said that if anyone had a good chance of surviving this cancer, dad did!
Dad’s tumor was very small, 2.7 cm, and had come through the wall of the bile duct and spilled out into the surrounding adipose (fat) tissue. However, they removed 10 lymph nodes which were all cancer free, and there seems to be no spread to any of the surrounding organs. They intended to perform a Whipple, but did not need to because of the size and location of the tumor. Instead, they removed his common bile duct and gall bladder only. With clear margins, no positive lymph nodes, and no metastasis, radiation oncologists at Mayo recommended no radiation at this time. This past week, 6 weeks after surgery, he went back for a checkup and all news was still good. He met with a medical oncologist who said that the choice to have, or not to have, follow-up chemotherapy was going to be left up to dad. They had no data to support whether or not it would help lessen the chances of a recurrance.
Aughhh…. we need advice from those who have traveled this road. My dad has had such good news so far…. Should he go down the road of chemo as a follow up? He just turned 70 years old, but is strong. I’d appreciate any advice given.
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