Hello
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Rob,
Welcome and congratulations on your recovery from resection and your “clean bill of health”! Keep us posted on the fun ways you’re enjoying life and always feel free to come to this site… it has helped me and my family immensely.
WillowHello Rob,
Welcome and as others have said, sorry you had a reason to find us.
I had Whipple surgery where they removed the head of pancreas, gall bladder, duodenum, and re-plumbed all of my ducts. I was told that my pathology showed no distal disease, no lymph node involvement, and clear margins. I was also presented the choice of chemo and/or radiation. I chose to do chemo mostly so I would have no regrets if the disease returned. I declined radiation because it didn’t seem to be indicated, no one could tell me that it did anything to increase my chances of survival, and it can be damaging (I’ve had it before for breast cancer).
It’s a very personal choice for sure and I say go with your gut (no pun intended) and never ever regret your decision.
Wishing you great good health!
-Randi-Rob, I was in sort of the same position as you. My tumor (also 4.3 cm) in the left liver lobe was found incidentally and all blood tests and marker tests were also negative. My surgery had similar results to yours..no mets to anywhere they could see and l. nodes were clean., extra wide clean surgical margin, no neural or venous invasion. The only thing I don’t know for sure is if the tumor was was you called, “encapsulated”. I’m not sure exactly what that entails. The tumor was totally within the liver though. By the time it was resected, it was 5 c.m. x 4 x 4. The main difference between the two of us, is that one pea sized tumor was also found…which they called a “sister” tumor….and made a big deal that it was not a satellite tumor.
My Mayo oncologist wasn’t pushy about chemo….but said if it were one of his own family, he’d be pushing for them to have it after a situation like mind. My Mayo surgeon said very strongly, ‘You ARE doing chemo…..we don’t do this operation without chemo.” My husband wanted me to NOT do chemo based on what he’d read…but after he heard the actual stats on this cancer returning, he changed his mind. I had already made up my mind before even talking to the oncologist.
While I would have LOVED to have forgone the chemo, I just could not leave that stone unturned. I realize that there are potential life long side effects that could happen, but right then, I had an overwhelming fear of the cancer returning…..and though there are no promises that the chemo works either, I wanted to give it my best shot while the cancer (if any remains) is possibly microscopic and perhaps easier to kill off.
So, I opted for chemo….Gem/Cis on three week rounds….4-6 rounds being the standard treatment. I’m half way through chemo now…..and I won’t tell you it has been a bed of roses, because it hasn’t. The actual side effects have been tolerable, but there were other issues that came along with chemo that have been not so much fun at all. I am looking forward to the end of the chemo and just pray that we’ve taken care of things and the cancer won’t come back. Oh, for a crystal ball.
Julie T
Rob,
The book that Marion mentioned is a best seller. It was translated to over 36 languages.
The Author,David Servan Schreiber, had many years of research on cancer diets. You can watch some of his videos on Youtube. Check the one he did at UCSF.Emad.
Rob….not sure they left any place untouched. What a workup you have had! Early detection is the key – you are a very fortunate person.
Regarding future diet, you may want to take a look at the below:
http://www.anticancerbook.com/
So thrilled for things to have worked out so well for you. Keep it up.
Hugs,
MarionThanks Everyone,
I’m thinking observation is for me, no chemo. I had a full workup before the liver resection, cameras have been everywhere looking for cancer, I even had a camera where I didn’t know they could send a camera, poor little guy!!! I had a cystoscopy, endoscopy, colonoscopy, CT scan, MRI and full body PET scan. I think most major organs have been biopsied and all my blood work was and continues to be normal, no cancer markers or elevated anything blood related.My Surgical Oncologist said, “go enjoy your life, no restrictions” and he wants a scan and follow up in 6 months, not sure what the Medical Oncologist is going to want for follow up and monitoring, he is waiting on my chemo decision.
I’m an odd case as far as I can tell compared to most of our friends here. Remember mine was an incidental find, no symptoms, no elevated blood work or positive markers. After the liver resection I have clear margins, clean lymph nodes & gallbladder and the tumor was described as encapsulated. The Surgical Oncologist said I am currently cancer free and I forgot to ask that same question to the Medical Oncologist yesterday, shit..
Still, if anyone thinks no-chemo in my case is a big mistake I would like to hear from you?
Diet…..
I want to make huge changes in my diet like everyone is suggesting. Can anyone recommend a good book? I will check out the diet post here also.Thanks, Rob
Hi Rob,
There is not much that I can add to the excellent advice that the others have already given you, and seeing as my dad could not do chemo there is no personal experiences that I can share with you either on this subject. To chemo or not is a very personal decision and one that only you can make for yourself. And I know that whatever decision you make that it will be the right one for you. Have you had a look at the chemo board that we have here on the site? It is full of posts by the members about their or their loved ones experiences with chemo. It is well worth reading if you haven’t checked it out, as is the nutrition board as well. They can be found here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
Please let us know what you decide to do with all of this, we are here for you.
My best wishes to you,
Gavin
Rob,
Chemo or no chemo is such a hard decision and only you can make that choice. Either way, I totally agree with Kris about a healthy lifestyle. I love to juice and eat mostly organic produce and food items, very little processed food and when I eat meat, I eat organic. I try to limit sugar but since chemo I crave it..so hard!!!! If you make a decision of no chemo I would have blood work and tumor markers done every 8 weeks.
Hugs
LisaRob,
Kris told you what I hesitated to tell you in my previous answer.
If I might add to Kris, following a healthy lifestyle is very important either you decide to do chemo or not.
Eating healthy and exercising are very important to keep your immune system active. Raw vegetables, fresh juices and fruits to replace sugars, stay away from fried foods, reduce red meat( you can substitute with beans and nuts).Try to go 100% organic and grass fed if you can, Food And Thoughts on the corner of US 41 and Golden Gate has only certified organic products and I will trust them in that with my life( I used to supply them with all their organic poultry few years ago)
I am not saying by any means that this replace the conventional treatments but for sure it will help you even to go thru Chemo.Emad
Rob, what a great way to join this site. Although none of us wants to be a member, you are one of the lucky ones.
To chemo or not is a very personal decision. I’m not sure which I would pick, given the option. Of course, this is with my personal experience with chemo.
I will make one suggestion if you choose not to chemo. Please start a very healthy diet, if you didn’t already have one. Limit processed foods of all types, especially sugar and fake sugars. Remove fake sugars completely if possible. Fried foods are a nono, and meat should be limited, too. This was recommended to me by my surgeon after I was deemed inoperable.
I tried juicing, but hated it. I do, however, make smoothies. Spinach is almost as healthy as kale, and tastes so much better! Although it makes for an ugly green smoothie.
Good luck and please keep us updated on your success!Dear Rob,
As we all mentioned before, there is not enough data on what is the best way to go forward with this disease.
I am not a patient, so I cannot put myself in your shoes. However my Dear Rob, this is a cancer and not a flu and no doctor knows what might happen.
My family went thru a lot in the last couple of years and I still can’t sleep most nights asking myself : WHAT IF?
Again, This is a very personal. Family support is very important in any decision you are going to make, they too have the same concerns that you have.Please don’t hesitate in discussing your feelings with them over and over again.Best of luck
EmadHi Rob, this is our biggest debate on here and it is only your decision. By a “watch” program I take it you will see your ONC about every 3 months? You are young and healthy and even though we try to be realistically optimistic, IF the monster rears it’s ugly head you can also start another treatment at that time. The most important thing is attitude and perhaps after some months of getting back to normal you may even change your mind on treatment plans. Sorry but it’s a tough one that only you can decide. Best of everything and keep up your good work.
Thanks for all the love everyone.
Went to the medical oncologist today, first appointment after the successful resection. Looks like he is following the National Comprehensive Cancer Network (NCCN) guidelines.
For post resection status of (no residual local disease) = (R0 resection)
Adjuvant Treatment: Observe or Clinical Trial or Chemotherapy? My Choice!
I’m leaning towards Observe, anyone think I’m making a HUGE mistake? By the way, I’m 55 yr old and very healthy, (except).
Thanks, Rob
Rob
Welcome and congrats on your resection and early detection. Please keep us posted on what your oncologist has to say about treatment.
LisaHi Rob,
Welcome to the board. Glad you are here, but sorry for your reason to find us. You were fortunate in that your CC was found early and surgery was done quickly. It sounds like you are doing well. I’m sure once you consult with your oncologist you will have a better idea of what direction to go from here. Thanks for sharing your good news with us, enjoy it. Hoping to be hearing more good reports from you in the future. Take care and let us know how things are going.
Darla
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