Topic: Information re CT scans please

Hi everyone

Following my resection, in Edinburgh, in August 2006, I had my first appointment with my surgeon in November.  He has told me that he is very pleased with the surgery and that chemotherapy is not appropriate.  Having read many of your postings I see that their seems to be a different attitde to this between the UK and the US.  Which is correct remains to be seen, but there is probably little that I can do to influence the UK view.

The main reason for this posting is to find out the accepted protocol for follow-up CT scans.  My first scan is to be on 1 February.  Should I expect future scans to be every 3 or 6 months?

A very Happy New Year to everyone.

Ron

Re: Information re CT scans please

Hi Ron,
Following my husband's resection, he was scanned every 3 months until a recurrance and now he is being scanned every 6-8 weeks.  Best of luck.
Joyce

Re: Information re CT scans please

My experience with scan frequency was the same as Joyce's husband.  Following my liver resection in 2001 when margins were clear and no evidence of spots, I got CT scans every three months, but the following year (2002), when it metatisized to the remaining half of the liver (and apparently was considered at Stage IV), I've received CT scans every two months during which I've been on several clinical chemo studies and had a couple surgical procedures.

Re: Information re CT scans please

Well, I had my CT scans last week and received the results this week.  Not good news.  The scans show a few spots on my right lobe, the side where the original tumour was located.  At present, there is some doubt as to whether  they are restricted to the liver or have metastasised from or to the liver.  Apparently, the histology following the resection, was not 100% clear as to whether it was a primary or secondary cancer and if, in fact, it is cholangiocarcinoma.  The smart money seems to be that it is cc.

So, what happens now?  Well, I did suggest that a PET scan might be appropriate to determine the confines of the tumour.  The surgeon thought this was a good idea.  The problem is there is only one PET scanner in Scotland.  He is going to try to arrange it.  But this should not delay surgery, should they decide to go ahead with that.  The likely procedure will be to remove the whole of the right lobe.  Would that not have been a better option in August when they were so pleased that they had been able to remove just a small section?  It's a rhetorical question.  Even if it were the case; we all know that hindsight is always 20:20.  There is always the possibility that they will open me up, see what's there and close me back up again.  That is a scary thought!

Chemo is now being mentioned.  When I had my original surgery I fully expected to go straight on to chemo, but that is not part of the protocol.  So why is it offered if surgery is not an option?  Would it not have got to any small cells that were left behind following surgery?  I have to say that I am not a great fan of chemo but I guess, even if I have surgery this time, it is something I am just going to have to accept.

I am sorry if I am sounding angry and a bit depressed but this is the first opportunity I have had to let my thoughts escape.  My family does not need the added pressure of me going off on one.  But you dear people may well understand my feelings just now and you can always close the page if you don't want to read it.  Thanks for giving me the chance to vent my feelings a bit.

Ron

Re: Information re CT scans please

Hi Ron -- It is quite normal for you to want to vent your feelings and also a healthy thing for you to do. How thoughtful of you for not wanting to put stress on your family by letting off steam to them. They also have these same feelings that you have -- the care of concern of family members is deep seated also. A positive attitude is so important and prayer has been proven to help in so many cases. I will pray for you and put you on a prayer chain through our church and many friends.
God Bless you!!!!    ~~  Jean

Re: Information re CT scans please

Hi Ron,
Practically the same situation I went through and still at it.  Only when my CC returned it mets to both lungs and my right lobe of liver.  Originally they removed the left lobe and gall bladder.  In hind sight I asked myself as well, why they didn't follow up with chemo?  I may have had a different out come.  However, I'm going to press on with trying chemo and radiation until the magic bullet arrives.  I've had days that I just wanted to say ......................!  But I have to much love in my heart to leave my family and two little grandchildren.  I want to be here as long as I can to help them in any way possible.  I'm prepared if the time is not given to me , but I'm going to give a good ole fight and squeeze a day at a time and be happy doing it.  I've learned beyond doubt, life will go on whether I'm here or not.  I understand the reality of departing this world sooner or later.  My family and I have talked extensively about the reality of all these what ifs and are prepared as much as one can be when and if I really get in a bad way.  Emotionally, we have joined forces and feel free to talk about all I'm going through as well as what they are thinking and feeling.  I've always been there and provided the shoulder now we just take turns.  It's truely a loving experience.  I don't feel like I have to hide my emotions by being stern and snappy at anyone as it is no ones fault.  I kinda say to myself  that I could have not been born period and would not have experienced any of the many beautiful moments I've had in life and continue to have.  Ron, I guess I'm saying it is rough, frustrating, and depressing, but if you take a minute and reflect; as unperfect this world is, There has and will continue to be enjoyment, smiles, and laughter in all our life's.  I really wish you the best mate!  Keep your chin up and give it your best.  Asking for a little help from God helps me.
Jeff G.

Take it to the Limit,One More Time! (Eagles)