jean
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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!
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
Gavin
It is so good to hear from you letting us know how your dad is doing. I hope his trip tomorrow goes well! There is something about getting back to life as usual that gives one hope, maybe a sense of control over a situation where one feels very little. It is so good that you are there for them both…they are very lucky to have you and I’m sure you are grateful for every day that you have both of them with you.
All the best to you!
Jean
Thanks Stacie for all that ALL of you do. The energy and dedication with which you fight this fight for all of us, means so much. Just know how very much you are all appreciated! So glad to hear that Marion is on the board…you couldn’t have picked a better representative for us!
Jean
Lisa & Jim
It was so nice to meet you both last night and share our common experiences and have a good meal! Too bad the camera battery ran out …only one picture and that was of Jim and I and none of Lisa!!
Jean
Lainy
Such WONDERFUL news!!!!!!! I think you made every one’s day, including mine! Be sure to do something to celebrate…it truly is a special day.
Jean
(Loved your picture!)
Hi All
I’ll make the reservations…so four of us; me, Lisa, Jim and Diane. I’ll just put the reservations in my name (Jean). I’m so much looking forward to meeting all of you! See you at 6:00!!
Jean
Good thinking Jeff…I have seen Lisa’s picture on the site but otherwise we won’t know each other! I’d be glad to make reservations and 6:00 is great for me.
Jean
Such very good news Lisa…I’m so happy for you! You must have been SO relieved.
I’m really looking forward to meeting you on Saturday!
Jean
Marions
That’s wonderful to hear…my hope is to be one of them! I found this person’s story so compelling because the tumor has never been resected. And it is so puzzling how this disease does have such discrepancies in survival…really how little is known about it. You’re right, it is about raising awareness so that hopefully more research can take place…so that lives can be saved…prevented and cured.
Jean
Cherbourg
Sorry to hear what a hard time you’re all having…such difficult times. Then your daughter’s wedding…as you said happy event/unhappy event. There definitely needs to be two of you!
In my experience, many older people just do not tolerate some of the narcotics and anti-nausea medications. Hallucinations and psychotic behavior are not uncommon and perhaps made worse by a combination of drugs. Then the anesthetic/sedation for the surgical procedure…a lot of drugs! It’s good they’re trying the Fentanyl, hopefully she’ll tolerate that better.
Just want you to know that you and your family are in my thoughts and prayers and hoping your mom will be doing much better tomorrow.
Jean
This is exactly what happened to me…even down to the diagnosed in April with a successful resection, negative margins, negative lymph nodes, and always normal blood work. My surgery was in May and I had my first follow up CT scan in September. They initially said it was great “absolutely no areas of concern” until a second radiologist read it and was concerned about two areas in the liver.
I was so afraid…I can relate with everything you said! I think a great deal of it was that I went back to the exact same feelings as when the tumor was first found…panic and utter terror. But, I think that’s all perfectly understandable…I simply could not separate the feelings/the situation from that initial one.
I had another PET/CT about 2 weeks later and it was negative!!! The surgeon said that after looking at it, the two areas were just post surgical changes and were not tumor. So, I think I’ve learned that on future CT scans things maybe found but that doesn’t mean that it’s the cc.
I know you will worry…that’s just normal. But, I have learned that it’s best not to jump ahead…as I frequently tell myself “don’t go there till you’re there”!
It’s all just so difficult I know and I think CT scans and all scans do indeed have “glitches”. But, from mine and Kris’s experiences, it may just be nothing.
Please let us know how it goes and I am sending all of my most positive thoughts your way!
Jean
