Intro- Hoping for a long road ahead
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Catherine,
Welcome to this wonderful group of supportive and loving friends. I agree with earlier posts that a second or third opinion is in order. I was overwhelmed with all the statistics when I was diagnosed and came to realize that we are each unique and some of the data is old! I have read many stories on this site where someone was inoperable and became operable so please don’t give up Hope.
Sending thoughts and prayers of healing
LisaJason,
I finally read the link while eating lunch. We’re hoping only left lope is involved, but even if mapping shows the right lobe is as well, they will wait a month in between and then decide if they do the SIRT on the right or an internal chemo. They mentioned wanting to limit radiation in case she may be a CK candidate down the road.
However, since we went through 3 cycles of the Gem/Cis, I will question the risks. I wonder if the treamtment plan involving SIRT was a reason they only wanted the 3 cycles of chemo rather than the highter number others here have done.
Thank you!
I’m all for blasting that blasted bell curve off the chart. Welcome and, yes, hope you and your mom are here for the long haul, along with a lot of the rest of us.
Duke-
I agree. Thank you for the good thoughts and I wish you the best.
And I hope that you, my mother, and all others associated with this site help not only increase the right end, but drastically shift the whole Bell Curve on survivability far to the right.
Catherine –
I was diagnosed in July, 2013. Initially, tumor in liver was 17 cm. It’s now down to 13 cm. No surgery for me.
As for the numbers game, I am an engineer – numbers are my life. I told people at work that I was lucky enough to “win” the low-odds CC lottery, so I expect to also win the low-odds survival lottery. Someone is keeping the right end of the curve past five years above zero so I figure it might as well be me.
I’d say make your plans for graduation. It might provide incentive for your mom. Medicine is not the only curative power in the universe.
Catherine,
Here is a thread on some SIRT research that I found interesting. You might also be interested.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10537
When I was looking into this for my wife, the main thing I was concerned with was whether the SIRT treatment was “whole” liver of “partial” liver. To treat the whole liver, some institutions will do it all in one procedure, and others will do it over two procedures.
I personally think the research indicates that using two procedures is safer, but I am not a doctor, and I know that opinions amongst interventional radiologists vary.
Hopefully this is helpful to you.
Best wishes for your mom,
Jason
Dear Lainy,
Thank you for the encouraging news. The chemo did shrink the tumor down to under 5 cm and hopefully the spheres will further attack it. It’s not the size, but the location that is her challenge. I don’t envision Mom wanting to put the radiation treatment on hold for a second opinion; it was already delayed 2 weeks on getting FDA to approve its use for her CC (I guess it’s an automatic approval for colon cancer but not for CC). Mapping is Thursday and 7-10 days later the seeds will be implanted.
From what I’ve read, I don’t think any harm could come out of proceeding with the SIRT. But, I will suggest that we may want to get a second opinion from Hopkins once it is completed. If there is a surgeon out there who can remove it rather than CK, she would be willing to try again. This board mentions the ups and downs, having Mom wake from surgery and having to tell her they left it in, was one of the lows. I
Thank you all.
Thank you, Catherine. I agree that tears are not a bad thing. They always make me feel better.
Welcome to this site, Sally. You are doing great for being new to the computer. I am also happy you are doing well and live closer to your family. Everything is better when you are near family that loves you.
-Pam
Dear Sally, welcome to our wonderful family but sorry you had to find us. You mentioned that your GP is giving you Palliative care and I am curious are you not under the care of an Oncologist? Wow what a change from Florida to NY. Brrrr. I think thought that it is good you moved near your son. Wishing you a ton of luck and please do keep us posted.
Pam,
I’m sorry if I wasn’t clear- please do not apologize. I was just so touched by your journey and willingness to help others- tears are not always a bad thing.
You have already positively touched me; I’m sure there are many, many more who you have helped.
Dear Catherine,
I am very sorry to have upset you. My intention is to help others. This is why I tread lightly on this site. I know our story is very sad and I have to deal with it every day, but I hope I can help in some small way by writing about our experiences. My daughter and our family were blessed as well and always had family around. Continue to have hope. That is what helped us.
Love and hugs,
-PamDear Catherine, welcome to our remarkable family but sorry you had to join us. As far as getting a 2nd opinion please remember that his CC is VERY rare and sometimes a 2nd set of eyes see things that the 1st set didn’t. I think 2nd opinions are good if for no other reason you will never look back and think, oh we should have done that for peace of mind. You mentioned Cyber Knife and my Teddy had C.K. It is a real Miracle and bought him 2 extra years. He was 73 and lived to 78.C.K. is pain free and I do know the tumor must be under 7cm. You are a great advocate and know that any decisions you make are almost always the right ones! I always say I graduated FROM gut 101! Wishing you and your Mom the very best and please do keep us posted as we truly care.
Catherine….I can only agree with the others – search out an additional opinion from a surgeon operating a high volume of Cholangiocarcinoma patients. You might also want to peruse our Medical Advisory Committee for additional information:
http://www.cholangiocarcinoma.org/medicaladvisorycouncil.htm
I am not trying to imply that your current surgeon is not experienced however; you would want to confirm his/her approach with that of other specialists.
Please keep us posted.
Hugs,
MarionCatherine –
I would still think a second opinion would be warranted and it does not mean you are unhappy with your current team, just exploring all the options. I know that some doctors are more willing to take risks that others. Or have different techniques to do surgery than others. And the nice things about where you live is that you have many, many choice of where to go.We were very, very lucky that when we were referred to Seattle for my husband’s surgery, we got the top liver surgeon in our area. He trained at Memorial Sloan Kettering and there was no doubt that he was going to do the surgery. We were told the same thing though that he could die on the table and that they could open him up and find it spread too bad. 14 hours later he was out of surgery tumor removed.
But, no matter how well I liked our entire team and trusted them implicitly I would have sough 2nd and 3rd opinions if necessary.
Of course, it is always your choice and your mother’s choice.
KrisV
Pam,
The hope of someday becoming operable someday is not something I’m ready to give up hope on; we’ll see how she does after the radiation.
One thing from this board, and also from our time spent during chemo, was seeing those who are so much younger and have to go through this. Also, Mom’s heart went out to those who were getting the chemo by themselves. We’re fortunate to have the family support, so even chemo treatments were an opportunity to visit, bring hot chocolate, and have some tears, but also laughs as we take turns sitting with Mom since there was only room for two others to be with her at a time.
I am very sorry for your loss. I have a daughter, and can not imagine how I would be able to stay positive and have the grace to support others. After reading your response, I had to take a computer break due to tears and again think about how blessed we still are.
Note to Sally- although cold in NY, glad to hear you’re closer to family now. We’ll be taking a vacation with Mom to Ft Myers at the end of April and will think of you as we enjoy the warmth.
Catherine
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