New member seeking your collective advice
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Hi Jayne,
Have you looked at the nutrition board that we have here on the site? Worth a read if you have not.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
Here’s another link about nutrition that might also interest you as well –
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Eatingwell/Eatingwell.aspx
And we love talking about food around here as well!
Best wishes,
Gavin
Dear Jayne, my own personal belief after going through this for almost 6 years with my Teddy is the most important thing is to keep eating. I am recouping first hand from a horrendous bout of Ulcerative Colitis and I almost starved to death. This has been even worse than my own rare Cancer. They were ready to put in a TPN, not a good idea and no one wants it, and I turned the corner. Without “food” we cannot fight what we need to fight, we have NO strength, one bad thing can lead to another, and it takes forever to build back up. So, between Teddy and I my vote is eat! What I would not have given for him to even eat the scrambled egg he wanted. Sometimes I think we get too caught up in distractions and it has never been proven that these so called health diets have made a difference. You know, it’s like when they say that sweeteners are bad for you. Ask any researcher and they will tell you that you would have to sit and eat a truck load! Yuck. I say, “let them eat cake, in moderation”.
I love this conversation about diet. When my husband was first diagnosed we decided NO MORE SUGAR or DAIRY. He has a co-worker who is Chinese and gave him teas to drink (especially Green Tea) and told him to eliminate all diary. THEN, as I was reading through all the “millions” of pages of information from the doctor, the chemo clinic, and whatever else I could find, I kept reading that dairy helps with protein intake especially when meat starts tasting bad, soothes any sores in the mouth and throat and I guess generally is a good thing. My husband LOVES milk (as I’ve shared before) so he started drinking it again. Then I read that basically keeping the patient’s weight up is most important so let them eat anything they want.
I would sure like any/all of you to weigh in as far as diet, food restrictions, etc. I support anything that helps the liver do its job and certainly want to eliminate any foods that might prevent or hamper the liver for working the way its intended. And certainly I don’t want to feed my husband anything that would/might fuel cancer cells to grow faster.
Thoughts, websites, greatly appreciated!
Jayne
Percy, just for you! Roasted Yams. Peel and slice in to rounds. Toss with olive oil, salt and pepper. Roast on cookie sheet at 400o until starts to brown. Truth be told I also sprinkle them with Cinnamon and a pinch of brown sugar. YUMMO!
Hi PCL,
I am not a dietitian, but like many others on this board, I have been cramming medical and nutritional knowledge like I was back in school studying for a seriously difficult exam. On the nutrition, I have been reading both Chinese and western nutrition books, cross referencing research and articles. There’s a lot of info out there but I also find that some are unreliable, while others have good intent but are not necessarily true. For example, there are a lot of articles on foods that are good for the liver, but there is a subset that’s better when a person has liver cancer. Anyhow, there isn’t a doctor in our family so I’ve been doing a lot of cross referencing to make sure we’re not eating things that are harmful, but there’s still trial and errors, usually through how my Dad’s skin responds.
On the yam – we find the easiest way to eat it to be steaming. I know it might not be palatable to those used to a western diet, but steaming is fast and preserves the nutritional content best. It’s hard to cook the yams directly into foods, as it usually takes too long to cook and disintegrates by the time it’s cooked. We’ve found the yams that’s orange on the inside to be the least starchy and Dad mostly eats that kind. Hope this is helpful! Just a caveat tho – this is purely based on our experience and research, I’m not a nutritionist.
Julie
Mark – thanks for the advice. I have been trying to get in touch with the USC physicians you referred to, but having some insurance authorization delays which is ever so frustrating. Getting authorizations is such an unrelenting process, I wish the doctors could review the case while we’re getting the authorization so there isn’t so much delay. Sigh. Sorry for the vent.
PCL – on the food, we have been doing a lot of cooking and nutrition adjustments at home. We never ate much meat (grew up by the ocean so fish is our staple) so Dad has been eating even less because he feels better without much meat. Instead we keep up his protein with fish and different types of beans. We are on the same page as you on not spending time or money on the herbal medicines. There is too much uncertainty there for us to feel comfortable putting that into our bodies. We are mostly focused on finding a balanced diet that gives him the strength to fight this disease and helps to cleanse out any toxins that have been accumulating in his liver which are hard to flush out on its own. So we generally stick to a very vegetable (both cooked and uncooked) and fruit diet, supplemented heavily with protein from fish and beans, and carbs from sources such as taro, yam and oatmeal. My parents also like soybean milk so we make it fresh everyday. It’s a great substitute for milk and very easy to make. It also doesn’t have any refined sugar or other processed items, which based on my limited nutrition understanding, helps with nutrient absorption as well.
Hi,
all I can say about Dr. Finn is that he is either very experienced or otherwise.
the best person that can tell whether RFA is possible and safe is the interventional radiologist. every medical professional have special expertise in the field they practice;otherwise we can just go to our GP and get everything done.
BTW, Ask your Dad or mom to cook some “eight precious soup” and put a piece chicken without skin and fat in it. take it a couple time a week and all of you can drink it too.
Eat less red meat; consume more vegetable and fruit and keep hydrated all the time.(6-8glass of 8oz of liquid). and remember, do not spend money on the quick fix like purchase herbs or medication from mainland china with unproved claims.. spend more time on the research of western medicine instead.
God bless.Julie,
I completely understand your feelings. In my case, I feel more confident in going forward with RFA because the recommendation comes from my surgeon and there seems to be a consistent rationale for the decision. My tumors are on the back of the liver and the caudate lobe. That means a more invasive open surgery, rather than laproscopic. Given that, and the relatively small size of each tumor, he wanted to try RFA first. If at any point that doesn’t work, he stands ready to do surgery.
I hope you can get the information you need, from Busittil or someone else, so you feel good about the decision. That’s what’s important.
Mark
Thank you all again for the wonderful advice and support, this forum is such a silver lining in this process.
Bruce – incredibly helpful info on the staging, I believe this is the first time I have a clear understanding of how the staging of this cancer works! I had read the NCCN guidelines and thought the oncologist’s staging response was indicating more advanced disease than my Dad’s case, and your explanation gives me a better understanding. I will have this in my back pocket next time I talk to Dr. Finn, though I doubt this will change his recommendation for treatment – he seems to take the approach that once there is evidence of recurrence, it’s not relevant what the staging is or what symptoms are present, it’s more important to just talk treatment. While I understand his perspective, I still feel that patients have the right to know. So thank you for this!
PCL – thanks for the articles, I will read them to get a better understanding for RFA vs. surgery. I am miffed that Dr. Finn (oncologist) didn’t send us for an appointment with Dr. Busuttil (surgeon) because my first inclination was to ask Dr. Busuttil what his thoughts are on surgery. Dr. Finn thought surgery could be challenging given the tumors are in two different locations and that with recurrence, it’s going to need systemic treatment like chemo. But then he recommended RFA w/o follow up chemo. Ugghh, now I think about his logic, it’s making less sense… I am working on getting a second opinion from USC based on Mark’s suggestions, in addition to talking to other hospitals in the country.
To your point, we feel fortunate this was caught early and want to continue learning and working on treating this disease. Since the diagnosis, we as a family have been doing a lot of learning, about this disease, about the liver in general, nutrition, exercise, attitude etc. As you know, there’s a lot of medical knowledge that we are constantly learning and digesting and applying to my Dad’s treatment. My Dad used to drink and smoke in his younger days but has stopped both for years now, and he has not had Hepatitis B. Now we have adopted a much healthier lifestyle, both on foods and exercise, but also as it pertains to work and stress etc. Nothing more important than staying healthy and time together as a family!
All the best,
JulieJulie – In response to your staging statement:
“We weren’t given the staging, although when I asked the oncologist last Wednesday what my Dad’s staging is now given his recurrence, he said Stage III or IV which seems quite an aggressive staging to me after looking at the NCCN guidelines.”
The accepted reference for cancer staging in the United States and elsewhere is the American Joint Cancer Committee Cancer Staging Manual, 7th edition which replaced the 6th edition and became effective 1/1/2010. I believe some doctors still use a previous version of the manual for staging, which may be the situation in your father’s case. For example, many people report that they have IHCC (intrahepatic cholangiocarcinoma), Stage IV, but there is no Stage IV for IHCC in the 7th edition, only a Stage IVA and a Stage IVB, and there is a big difference between the two of them.
From your discripitons of your father’s situation, he was initally T1N0M0 and Stage I. T1 is a solitary tumor without vascular invasion, N0 is no regional lymph node metastases, and M0 is no distant metastases. Usually, a patient is not restaged when his cancer recurs, but if they did restage your father, he would br T2bN0M0 and Stage II. T2b is multiple tumors, with or without vascular invasion.
In order to be stage III, the tumors would have to perforate the visceral peritoneum OR involve local hepatic structures by direct invasion.
To reach stage IVA, a tumor would have periductal invasion OR regional lymph node metastases would be present. My wife had a positive regional lymph node and was stage IVA, but she was resectable. Stage IVB results when distant metastases is present and usually that results in no resection.
Also, the above is just the case for IHCC. Different stagings are used for Perihilar CC (aka Hilar CC or Klatskin) and Extrahepatic CC (aka Distal or Distal Extrahepatic). Whereas the stages for IHCC are 0, I, II, III, IVA, and IVB, the stages for perihilar are 0, I, II, IIIA, IIIB, IVA, and IVB; and the stages for Extrahepatic are 0, 1A, 1B, IIA, IIB, III, and IV.
An example of how staging depends on the type of cc a patient has is illustrated by the impact of a single positive regional lymph node on staging. A positive node can cause a patient with IHCC to be stage IVA, a patient with perihilar cc to be stage IIIB, and a patient with extrahepatic cc to be stage IIB.
Bruce
Julie,
I don’t have much to add to this discussion but wanted to say welcome and sorry you have reason to find us. Sounds like you are a wonderful advocate for your father.
Take care,
-Randi-Hi Percy,
Welcome home my friend!! I hope that you and the family had a great time in Hong Kong! Glad to have you back and sorry to hear about the flight issues, grrrrr! That would have been stressful to say the least! Hope that you are able to catch up on your sleep and get your strength back again, lots of resting for you me thinks!
Welcome home and stay strong,
Gavin
Hi, Julie,
Please excuse for my late reply, I have just back from Hongkong, And I have to sleep in between during the day today to regain my energy. It was exhaust and stressful traveling with family members who had to traveled for 22 hours on the return trip(usually takes 13 hours) because “Cathy Pacific Airline” let a passenger on board without the correct passport and after four hours of flight the plane have to return to Hongkong for re inspection.(a waste of almost 10 hours of my time ;if I did not get DVT this time I will be lucky).Back to the questions; I am sorry,I should use the term “nonsurgical therapies” to describe the use of RFA instead of “palliative procedure”. For tumor<3cm, there may not be any difference between percutaneously RFA and surgery. (the 2 following articles may give you more info about RFA vs surgery.)
1.Chen MS,Li JQ,et al. A prospective randomized trial comparing percutaneous local ablative therapy and partial hepatectomy for small hepatocellular carcinoma. Ann Surg 2006; 243: 321.
2. Huang J, Yan L, Cheng Z, et al. A randomized trial copmaring radiofrequency ablation and surgical resection for HCC conforming to the Milan criteria. Ann surg 2010;252:903
Despite the encouraging RFA data, most clinicians consider that surgery is preferable, if it is feasible,even for small tumors. Long term survival rates of 40 % or higher can be achieved with limited hepatic resections. In carefully selected patients having no vascular invasion by tumor,solitary lesions without intrahepatic metastasis, tumor diameter1cm,up to78% 5 year survival rates following resection have been reported—from uptodate.com literature review version 19.2: May 2011 on” nonsurgical therapies for localized hepatocellular carcinoma: radiofrequency ablation,percutaneous ethanol injection,thermal ablation,and cryoablation.”
Usually it is the liver surgeon who will recommend reresection or RFA procedure to treat the recurrence and not the oncologist since the surgeon is more specialized on that field and not the oncologist. medical Oncologist specialized in using chemotherapy and targeted agents to treat the cancer.I think DR. Finn would send you to the liver surgeon for consultationfirst But if Dr. Finn felt confident enough, he can do that too;I won’t be surprise he will recommended RFA after he saw your father’s CT scan report.I have no ideas how good he is in treating CCA, I just thought that he should let you talk to the liver specialist first.DiD he? You can google him on the internet to find out his credentials and specialties . But if I were you, I will definitely try to get a 2nd opinion from the surgeon that first operated on you father to get his opinion on RFA. The 2 articles I mentioned above may help you to make a decision on the new development offered by Dr. Choti from JH.I do also agree with the last paragraph about what the UCLA oncologist (Dr. Finn or others)had said to you. and may be to your surprise, if this is exactly what will happen to me, I will choose ,if location allows, RFA over wedge resections of the tumor unless surgery can be done through laparoscopic means..Julie, in treating CCA, a patient has to learn a lot about himself/herself as well as all the info. that are related to CCA and make the most logical choice for him or her. Your father is from Mainland China and i am from Hongkong;your father is 63 and I am too. It took me about 10 months to have the recurrence and so did your father. In short, your father may be in the same course of treatment like me in the future to come.But your father may not realize how lucky he is . The best gift that God give to your father is the early diagnosis that allows your father to have the best chance for long term survival and that is exactly like the situation I am in . I am a ICCA patient for 45 months now and this is the Grace of God that given to me as well as to your father.
BTY, does your father has Hepatitis B(active or Chronic)? If he like alcohol, he should be advised to stop by now.
In your father’s case CCA is more or less like a chronic disease like high blood pressure or diabetes; it is a long and winding road; it needs keeping up the new development and knowledge in order to have the chance for a better and well tolerated treatment plan or the finding of the miracle– the cure.
keep in touch,
God bless.Thank you everyone for your warm welcome and good wishes, it’s quite the blessing to have found this forum and such a wonderful supportive group of people. In the short span of time since I have been exploring this site, I have learned so much from all of your posts, and although each person’s experience is different, the information we have garnered has been remarkably useful for me and my family, in considering next steps and being prepared for upcoming meetings with doctors. A very sincere and heartfelt thank you, and our best wishes for everyone who’s fighting this!
PCL – thanks for the very helpful info you have shared. Below is more info on my Dad’s case. I was also struck by two of your comments which I thought I’d throw out before I forget. First is your comment on my Dad’s oncologist not being specialized in treating cholangiocarcinoma. I wonder how you think I can find out more about what his experience is – we were “assigned” to him after my Dad had his resection with Dr. Busuttil and was told by him that Dr. Finn sees many cases of cholangio. Second is a comment you made in response to another of my posts – you had referred to ablation as a palliative, not curative, procedure. I wonder if you could refer me to any publications you have come across that I can read to understand ablation and its impact on tumors, because as I was thinking about it, it seemed to me that if RFA could lead to necrosis, then how is it markedly different from resection? On this last point, I just got word from Dr. Choti’s office at the JHokpins (I had sent my Dad’s medical files to him for a review) which says he believes my Dad can undergo resection as the next step. This is a totally new development so we are just absorbing it…
In response to your questions on my Dad’s background – we are immigrants from China but we kids mostly grew up in California. My Dad is 63 this year, and quite healthy and active otherwise. Even now, he insists on tending to his garden, planting new trees now the weather is warmer, and doing a lot of other activities, though since his surgery he has started doing more reading as well so he can rest in between more physically demanding activities.
The mass was discovered in autumn 2011, but initially the radiologists diagnosed it as a cyst, then UCLA thought it was heptocellular carcinoma. Dr. Busuttil recommended resection even though biopsy wasn’t done because he felt the size of the tumor and its location was reasonable for resection regardless of what type of tumor. It was only from the pathology report after the surgery that we learned the disease to be cholangiocarcinoma and not heptocellular carcinoma. The surgery was done in March 2012 and straightforward from our understanding – the tumor was in Segment 6 so it was taken out along with the gallbladder (gallbladder was normal). There was a 1cm negative margin and no lymph node. We weren’t given the staging, although when I asked the oncologist last Wednesday what my Dad’s staging is now given his recurrence, he said Stage III or IV which seems quite an aggressive staging to me after looking at the NCCN guidelines. The two new lesions were discovered in his CT in January 2013 and they are 1.1cm and 1.2 cm, one located in Segment 7 and the other located in Segment 4/8. My limited understanding is that the Segment 4/8 one is the harder one for resection, though I’m eager to hear what Dr. Choti has to say given he seems to believe resection is possible.
That is the short summary of my Dad’s case – as of now, the UCLA oncologist has recommended ablation because the tumors are small and in locations that he believes are reasonable for ablation. I first asked him about resection and he seemed to think surgery is too invasive when ablation could achieve the same result without as much damage to the body. Then I asked him about follow up chemo after ablation and he said that it wouldn’t make sense because once the tumors are gone then there is no marker for tracking the efficacy of the chemo drugs. I get what he’s saying, but given that it’s fairly certain that there will be cancerous cells lurking after ablation, I am going to push him more to consider whether adjuvant/maintenance therapy is appropriate.
I understand that each person’s case is different, but as always, your input and guidance will be much appreciated. Thanks!!
Julie
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