My surgery
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Willow and everyone again, thank you! You have all been here since day 1 and it means so much to me to have this support system and I try to give it back as well. You are all so wonderful
I do believe they sent it for testing. I remember signing a release for it. I should follow up with that at my next appt! Hi Kathy, sorry you were not able to access the caring bridge site. As far as reoccurrence, I have no idea what the factors could be, only that I have heard that with this cancer, unfortunately it is common for it to return. It sounds like so far you are beating those odds and that is awesome. Congrats! I also don’t know if a particular type of CC makes a difference on that reoccurrence (anyone feel free to join in
) You mentioned Klatsin, I have intrahepatic. Unfortunately they had found my tumor back in 2009 and had been keeping an eye on in until 2013 under the impression that it was a liver hemangioma and that was not the case. It grew from 6cm to 17cm! I have also read somewhere that size of tumors during resection could indicate more probability of reoccurrence or not. If that is the case mine was still in double digits when resected and I don’t know if that puts me in a higher risk or not for reoccurrence. As far as tumor markers mine was never that high. At the time of surgery mine was 21 I believe. I still don’t know what these numbers mean alone. I do know that during chemo treatment my onc told me that these numbers were a good indicator whether or not treatment was working, aside from that…I do not know. The results of my surgery so far (I have not had a scan yet, will soon I believe) but the pathology report came back with clear margins and no lymph node involvement. My surgeon was wanting to achieve a certain dimension for a clean margin and got even more of a clean margin than she was hoping for, she and the team were very happy about the results. Honestly, I still don’t completely understand the whole margin thing and still learning about all of this really. My surgeon was leaning towards not continuing chemo but bringing it to the board to get a unanimous decision. Ultimately I know the decision Is mine. It seems like it might be good to do for a bit based on the responses I have read. Thanks everyone for all the love and support. Right back at ya!Porter,
Congratulations on such a remarkable recovery…I can’t believe you’re back to running kids around and holding down the fort after only a month! Then again, you came through chemo with stride and there’s not much time for chilling with little ones! Marion gave a really good picture of the adjuvant chemo situation from past and present. It is interesting that more docs are rec it than in the past though there are still big studies needed to show efficacy. Did they take so e of your tumor for genetic testing? So happy to see you doing great and with the resection behind you.
WillowKathy….you are right with your statement re: adjuvant therapy. It is estimated that 7 of 10 oncologists recommend it however; at this point, we don’t have large scale studies providing data in re: to the efficacy of the drugs.
Several adjuvant studies will complete by mid to end of this year and those results will shed more light on the situation.
Porter, sorry for not reading your question correctly. When Kathy underwent the resection 3 1/2 years ago, there was less inclination of administering adjuvant therapy because; there was no evidence that it might work – which drug – which combination of drugs? Many felt that rather than have the patient undergo difficult treatment with unknown results, the conservative approach appeared to be that of no chemo. We also have to remember that we are witnessing a higher increase of resections than that of several years ago in addition to a few targeted drugs available and the increase in radiation treatments for adjuvant therapy. Rarely do we see “debulking” of tumors rather, the approach of shrinking the tumor, resect, and then treat, appears to be in the forefront.
Porter, from what we have seen on this site, adjuvant therapy will begin 6 weeks post surgery if you so choose to do it. You might want to reach out to others and address the question as to why they choose adjuvant therapy.
Kathy, you have done extremely well – no recurrence 3 1/2 years out; that is fantastic.
Hugs to both of you,
MarionKathy,
Interesting that you mentioned that the meds for the high cholesterol may have been the reason your tumor was not found sooner. My husband never took any drugs, but had been put on a low dose of statins for high cholesterol against his better judgment and I often wonder if that is why his was not found sooner or if that is what triggered it. There are just too many unknowns about this rare disease and I am hoping that is changing and will keep changing in the future and eventually we can beat this.
Good luck to you and you also Porter.
Love & Hugs,
DarlaPorter..Thanks for your post on my site. I tried to access your caring bridge and my poor computer skills didn’t get me there. Somewhere I have missed what the results of your surgery were. You mentioned clear margins. Was that your situation? That was for me, too, and I know there is a debate about this and the last I heard, (correct me Marion if I’m wrong here), they are leaning toward doing chemo. I did not have any chemo after my surgery 3 1/2 years ago as my doctor said at that time that the jury was out on the effectiveness. I was not keen on it either (but who is??)So far so good.
I am wondering myself what the studies are for why it comes back for some and not for others? Are there different characteristics? Is it different whether it is extra hepatic or intraheptic or hilar? (sorry if I’m using wrong terms). I had a klatskin tumor which had been growing for quite awhile (Should have been picked up 1 1/2 years before, but masked by the statin I was taking for high cholesterol). My CA-19-9 was 88 at the time of surgery..I have read here of extremely high counts. Is that any indicator of how virulent the tumor is?
I am so happy to hear that you are back in the swing of things with your family. You are remarkable. Let us hear what the future plan is for you.
Hugs
KathyPlease be patient for just a bit longer – we expect to launch the new website within the next few days. It will be much more user friendly and the search function will allow for easier access to previously posted threads whereas the advanced function will retrieve older postings.
Hugs to you,
MarionI do have a question, I also HAVE NOT used the search tool. Are there recommendations as far as post op in regards to continuing chemo or radiation if they have achieved clear margins? As far as this being a benefit or not?
Thanks all.That is really great news, Porter! Here’s hoping for more good news at your appt next week!
Cheering,
CarolineHi Porter, glad to hear your normal life is resuming, that is a great sign and you are a very strong woman. Keep the good news coming, we love it!
HI all. I have been real busy and almost into a month post op. I am doing really well and almost back into a normal routine with my family, kids, driving, etc. I have a post op appt next week with my amazing surgeon and believe I will find out what my next steps are as far as if they want to continue with any kind of chemo or radiation. I haven’t been on here too much lately, but always thinking about this group of people. Hugs and blessings to you all.
PorterPorter is doing well. You can find her posts here by searching pfox2100 to read all her posts or on Caring Bridge search for Porter Fox.
Darla
I have been away from the board and just catching with people. Is there any word on how Porter is doing? Would like to hear the latest leg if her journey as I don’t have the Caring Bridge info. Thanks!
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