Returning to the forum with good news and bad news

[lainy]

Jean, welcome back, it’s been way too long but no one will blame you for ever taking a break from this site. Whereas it is a salvation for some (me) it is just that hard for others. Sorry to hear of the return of the C but you are at a good treatable place still with the Cc and you have a great Doctor. I am just wondering if the tumor is 1 cm if they mentioned Cyber Knife instead of surgery? At any rate I will be saying prayers and sending best wishes your way for Wednesday. Please try to stay strong as attitude is so helpful in recovery. And please let us know how you are doing.

[jim-wilde]

Jean, I can fully relate. I had a resection 5/09 at NY Presbyterian done by Dr Tomoaki Kato. Final path report was clear margins. I’d been getting quarterly liver function and CA 19-9 tests. Results were all in the normal range until early August this year. I’ve had one CT and two CT/PET scans since then, all normal and we’ve gone to monthly blood tests. Liver function tests have slightly elevated and dropping bili numbers and the CA 19-9 has bounced around 100, with no clear pattern. No clear answer has emerged yet, so the doctors are going to continue reduced time between scans and monthly blood tests. After several years of all normal, now this, has caused me to be pretty sure something is going on, just not sure what. The ‘good news’ in your case is they have actually identified something and are taking action, as disconcerting as that may be. In my case, knowing the high probability of cc returning, has caused me to never really think of me being ‘cured’.

I wish you well in round two!

[jean]

The new format evidently didn’t cope well with my long post! So, I’ll continue with a second post.

I live in Seattle and am being treated at Swedish Medical Center. My surgeon is Dr. Michael Hart who has extensive experince as a hepatobiliary/pancreatic surgeon. I trust him very much and he is also an exceedingly kind person.

I’ve come seeking the combined knowledge of the wonderful people here. So, any advice is very welcome with regard to the surgery, chemotherapy, best place for second opinions, and just advice in general. I apologize for my very long absence, but I simply came to the point that I could not be here. It was just to hard, to difficult for me. I know many of you will understand.

Thanks in advance for your advice and words of wisdom, as I know there is much of each to be found here!

Jean

[jean]

I have not posted on the forum in a very long time and have such mixed feelings about posting now my most recent news. I very much don’t want this to be discouraging for those who have surgery and are so hopeful for a cure. But I do want to make a definite point of the importance of follow up and of taking small changes as significant and therefore acting upon them.

I had a successful resection in May 2008 of an approximately 3 cm intrahepatic tumor and have been followed with repeat CT scans and lab work. My scan this past May was negative and liver enzymes, though a little elevated, were well within the normal range. They were rechecked in September and were further elevated. The decision was made to just recheck them in a month and do a CT if they remained elevated. I felt perfect and it was almost 3 1/2 years since my surgery. I really believed that I was cured so I was definitely not very concerned. They were checked again and were still more elevated. I then had a CT scan that showed a recurrence at the margin of the previous tumor, a little less than 1 cm in size. The scan showed no other areas of concern and no lymph node involvement. When my doctor walked in the room, he said I have bad news and I have good news, a recurrence but still with much hope.

This was on 11/3 and I’m scheduled for surgery this Wednesday, 11/30. My surgeon believes that it is a potentially curable recurrence and I hold on to that hope, not knowing what they’ll actually find during the surgery. I didn’t have chemo following my surgery in 2008, after geting a number of opinions. I really believe, in the setting of a recurrence, that it is indicated this time. So, I will be seeking a number of opinions regarding this.

I do feel so grateful that I was able to have a potentially curable resection 3 1/2 years ago and that this recurrence was found so early. It truly amazes me, and even more so when I know how rare it is to have such good fortune with this disease. On the other hand, it also is so devastating. I believed, truly believed that I was cured. I feel so fortunate on the one hand and so sad on the other.

[Author]

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