Looking for Direction
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My father will be a four year survivor this october.He was diagnosed with extrahepatic cholangiocarcinoma klatskin tumor.No Surgery no chemo and no radiation.
I am so sorry to hear your news. My grilfriends brother is in Toronto this week to see if he can have a new team resect the tumour. One thing they said was if he were 20 years older (he is 41 right now) they would not even consider doing anything. This just sounds like an awful condition.
I too live in Ottawa ON (Canada) and my mother just passed away last week from Cholangiocarcinoma. At first she was told her was resectable and then they changed their minds. She died within 4 months of prognosis. She was someone who was healthy and happy. She only saw an oncologist 2x’s since diagnosis and when she finally got some attention it was too late. In March, her tumor was 10 % of her liver and by mid May, when they did the second scan it was 60 %, so they moved her to pallative care and we watched as she cried and eventually died. There didn’t really seem like any Doctor wanted to touch her case. Stay away from Dr. Asmis at the Ottawa General .
sshamilton wrote:Oh yeah – Thank Raye! I sent your info on to my friend Tanya so she can reach out with you directly given the is leading the charge!.I’m travelling through the U.S. for another 4 days before I arrive back home in Ontario. My phone is on 24/7. 1-269-598-1861.
Turkey sounds like a great idea Kris, but my Dad just decided he didn’t want to go to Hungary before starting Chemo. So my guess is he wont want to go to Turkey either.
There are a number of medical treatments in Canada that are used for one thing and not covered for another. However, they are often brought to the attention of the public, with great embarrassment to the Government through the media, so much so that they have to make it available for other uses. This happens all the time.
I think by going to another country will not help anyone here in Canada. I still have to find out about the Cyberknife in Hamilton to see what they say, because it was the radiologist at Princes Margaret in Toronto that gave me some info on Cyberknife when I asked him about it. I’m waiting for a Dr. to call me back from Hamilton.
I am not afraid to go to the media for my Dad and others to follow.
Dianne
Dianne,
There is no cyberknife machine in Sweden. When I was researching, a came across an article that talked about medical tourism to Turkey for cyberknife. It was much cheaper than in the us and since the machine is practically always in use, the doctors there have a lot of experience with the procedure. You might want to check that out. You could get a really nice vacation out of it too!Kris
I am sorry to hear about your friend, but as you can see above you’ve come to the right place for help. Your friend, has a good friend in you.
I’m also in Canada, but in Ajax, Ontario just east of Toronto. The CCF has something in the works for international folks and is working at putting together a Canadian page… in the mean time I have posted a number of things in the “Alternative Treatments” section that pertain to Canadian resources and links to them, including Cyberknife, Homeopathics, Naturopathics.
There is little to no information on CC at the Canadian Cancer web site, which has brought all of us Canucks here.
Compared to the US, Canada is behind as far as “other treatments”, such as the Cyberknife. There are only a hand full in Canada, but it’s currently only being used for brain tumours and one or two other types of tumours, so unfortunately it likely wont be covered by OHIP if used on CC.
I am still researching Cyberknife for my Dad, and will update as we go.
Let me know if you have any questions and come back often, we are all here for you and your friend.
Dianne
Additionally, we have to remember that only a fraction of CC patients are members on our site. There are survivors on this board and also there are those patients who have not chosen to communicate with us and who have kept this cancer stable for many years.
Best,
MarionOh yeah – Thank Raye! I sent your info on to my friend Tanya so she can reach out with you directly given the is leading the charge!.
I appreciate all of this. Part of the process, outside of learning the medical side of it, it to gain a realistic understanding of what we are dealing with and part of the strategy is to see if we can find a survivor. Part of that is to also define the word survivor (ie does that mean someone lived to a ripe old age, or someone who managed to survive for 10 years, 5 years, 3 years etc).
I appreciate the feedback and although it saddens me as it looks like my 41 year old friend won’t be around to cause mayem in the “old age” home. Although disappointing it is “information” and might have an impact on what direction the family will take as right now they are running themselves ragged looking for an out and out cure (I cannot blame them). In all of this though they are seeking as many medical opinions as possible – although you would be amazed as to how difficult doctors can sometimes be about granting the referrals that are needed to get other opinions. That being said it is easy to fix by a slight increase in “intensity” – theyeventually acquiesce although it is disappointing that they make us expend this escess energy.
The problem with your idea of finding “a survivor” is that this cancer develops so differently in different people. Also, the size, location and number of the tumors determine what kind of treatment can be used.
That said, I think our patients who have lived a long time with good quality of life:
1) get second opinions (and third, fourth, fifth…) about treatment plans
2) change their health habits overall as needed, paying much more attention to nutrition, exercise, etc.
3) Have some kind of spiritual belief to sustain and guide them
4) keep an open mind towards alternative treatments
This is just what I’ve noticed from reading posts here. Something to think about.
All my best to you,
Kristin
I will be blunt, it is hard to find someone who has been cured who has not had a surgery to remove the tumor, but this board is FULL of survivors. Our Jeff survived 10 years with the disease before passing recently. I am at a year and a half since my reoccurance and trust me when I say I am not going anywhere anytime soon.
Try to get more opinions about having surgery.
We have had several people here had chemo which shrunk the tumor enough to have surgery later.
Kris
sshamilton wrote:Thank you – I will look everywhere I can.One strategy I had was to find a “survivor” and work backwards. Unfortunately there do not seem to be any. This is very discouraging but it is also important that we gain an understanding of “reality”. I am so sorry for your loss, I lost my mom to breast cancer, so I know the pain it causes – it wouldbe nice if mygirlfriend could be spared this feeling.
I’m here. I’m your survivor. Phone me or e-mail me.
269-598-1861
Raye
Thank you – I will look everywhere I can.
One strategy I had was to find a “survivor” and work backwards. Unfortunately there do not seem to be any. This is very discouraging but it is also important that we gain an understanding of “reality”. I am so sorry for your loss, I lost my mom to breast cancer, so I know the pain it causes – it wouldbe nice if mygirlfriend could be spared this feeling.
Hi there,
I know what you mean about being inundated with options and information just after diagnosis and it is a lot of important information to have to take in and understand, especially during what is an emotional and stressful time. One thing I would suggest strongly is to make a list of any questions at all that you will have prepared ready to ask the oncologist and also to write down what he says. It is so easy to get flustered in these meeting and forget to ask something and also forget what has been said to you. I took my dad to all his meetings with his specialist and forgot things to ask and what was said to us sometimes. So a list will help you all.
As to my dads case, he was 64 when diagnosed and surgery of any type was not an option. We never asked how long dad had and he didn’t really want to know either. What was important to my dad was having a good quality of life for the time that he had left and this was something that we discussed with his specialist quite a bit. He felt that considering this and the only 2 treatment options available to my dad that PDT would be best for him at first with the possibility of doing chemo at a later point.
He had the PDT in September of 2008 and it managed to stop the tumour from growing any further, but it didn’t shrink it. Obviously we hoped for shrinkage but the next best thing was at least stopping it or slowing it down. After this his jaundice cleared up and he seemed fine until April of 09 when the jaundice came back and he started to go downhill again and another ct scan showed the tumour was growing again. Then suddenly he just seemed better again, jaundice disappeared and he looked and felt fine again. Then later in the year, around September I think he started to go downhill again and his local GP said to me that he didn’t think dad would have made it this far and that he thought he would have passed away around April when he went downhill again.
Dad passed away in December of last year and to be honest, I think he lasted longer than what his doctors thought he would. He never got to try chemo as when they assessed him as a candidate for it, his jaundice came back in a big way so they couldn’t do it. Dad only had PDT once, but I have heard of patients getting it every 3 months. I forgot to say that he also had a metal stent inserted as well.
I hope some of that helps and if I can help in any other way regarding my dads experiences with PDT then feel free to ask. Have you looked into other treatments like chemo, radiation or Cyberknife? The more information you have regarding everything to do with CC and possible treatment options the better. At the top of the page there the search forum function and this will throw up a lot of posts from members regarding a lot of other treatment options and their experiences of them. Keep coming back here and keep asking questions.
My best wishes to you and your family,
Gavin
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