Confusion re tumour markers?
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Forgot to say as well, Marion’s suggestion to you of taking a notepad to meetings with docs is spot on! It is so easy to forget everything that is told to you in these app’s and I say that from having done that as well from meetings Dad and I had with docs etc! And also, make a list of questions that you want to ask in advance if you can, that helps as well.
Gavin
Hi Jules,
I just wanted to chip in here and say that I so agree with what the others have said to you about focusing on the present and not thinking about the what if’s and could have’s. Not thinking about them can be hard to do I know, but to be honest, thinking like that will get you nowhere. I went through that for a bit with my dad after his diagnosis as well and as Lainy says, it is a waste of energy.
My dads CC was deemed inoperable from his diagnosis and I can still remember what it felt on hearing that, like getting hit in the head with a baseball bat. I know you are scared, I was too and that is normal. Your mum will need you to be there by her side throughout and to be strong for her and i know that you be able to do both. And you are not alone in this here, we are all here with you as well. Please keep coming back here and let us know how everything goes on Friday and what the doctors say and recommend.
Hugs,
Gavin
Hi I completely understand how y’all feeling. When I was 30 I after multiple images and scans I was diagnosed with a small liver hemagioma . Until now I have even been getting scans every 6 months which has showed steady growth until the last 6 months where it doubled its size and was just last week diagnosed. My ca19 9 slightly elevated as they said nothing to lose sleep over before I got diagnosed. Liver function tests and bloodwork all within normal limits and generally I feel fine. This has been beyond frustrating and angering as if they got this right the first time I most likely could have been operated on. I am learned to accept this diagnosis not own it but accept it and because of this site I have new found hope strength and desire to fight. Trying to let go of fear and anger and take each day each moment one at a time. Much strength to you and your mom and again much care to everyone here. So grateful I have “found” you all!
You are welcome, dear Jules. I agree with you in that the knowledge on this site is impressive. The reason for the success of this discussion board is directly related to the incredible membership comprised of people touched by this cancer and their willingness to share thoughts, ideas, and experiences with us all. I am in awe of each and everyone.
Hugs,
MarionThank you for your reply Marion. I will indeed stay hopeful and am grateful for the vast amount of knowledge on this site.
Jules…About 10% of the Caucasian population even those with large tumors do not have elevated CA19-9 levels. As Dorien mentioned, this is the case for her husband also and that is the reason for physicians to not rely on this test for diagnoses. Jules, due to the rare occurrence of this cancer, symptoms such as the ones your Mum has experienced (and other symptoms) often are overlooked and/or related to other ailments. I have learned that there are usually no symptoms associated with a slightly enlarged liver and that even a grossly enlarged liver may only present with a feeling of fullness or a slight feeling of discomfort.
There is no early detection method in place for this cancer and it is for this reason alone that so many people are diagnosed with late stage disease. In fact, many physicians are not aware of this cancer, a problem encountered with most “rare” diseases. In fact, my husband’s Primary Care Physicians had never seen patient with Cholangiocarcinoma in his large practice; my husband was the first. Therefore, dear Jules know that what happened with your dear Mum is not unusual. You might want to take along a notebook for the upcoming visit with the physician, as much information will be heading your way. Stay hopeful and know that tons of support is heading your way.
Hugs
MarionYes, I agree Lainy that I must concentrate on the present. My mum has always been the rock of the family and now we will be strong for her! I will keep you all updated on what happens.
Jules, I know it is hard but PLEASE try to concentrate on the present. What haves and could haves are a waste of good energy and will get you nowhere.
DO NOT listen to statistics we are not a statistic. That is why it is important to read up on our posts as you will see all the miracles and hope around here! I am sure it is hard to wait for Friday and that is why you need to pull on your strength. Once you get a confirmed diagnosis honestly, your fright does turn to fight! It is a very strange Cancer and if we knew more (God willing) we wouldn’t have to be here. Good luck on Friday and looking forward to hearing the results. BTW do not be timid on asking the Doctors questions too. Be strong.Hello,
Thank you so much for your replies. Unfortunately there is no treatment plan as yet. My mum has her biopsy to confirm the diagnosis this Friday, though the liver specialist says that he is certain. Then hopefully we will know what can be done. They have already told us that it is unoperable, which has scared us half to death, given the statistics that I have read.
We have so many regrets as my mum has had a “twinge” in her liver area for probably about five years, but ignored it as it was so slight. We wish she had gone to the doctor sooner, and the situation may be very different. The vibe I get from the medical teams is extremely negative but we are a strong family and we will fight this with everything we have.
I feel very confused about how my mum could have had this for so long, when it is supposed to be an aggressive tumour. So much just doesn’t make sense at the moment.
Jules
Dear Jules, there is absolutely nothing normal about CC. Sometimes it takes a little longer for a diagnosis. You want to make sure that where ever your Mum is being treated has a lot of experience with CC. Also try to read up as much as you can as knowledge is really our best tool in fighting this. And far from last, we are huge believers in other opinions. It is also normal to not have any signs until Stage IV. Or someone may have signs but don’t pay attention as it could be a little itching or a little zap of pain somewhere, not enough to pay attention too. Have they given Mum a treatment plan yet? Hang in and be strong!
i think that some people DO have “normal” tumor markers and some don’t.
The ONE THING i’ve found with this cancer is that it sure doesn’t seem
to be a very predictable one. So many people have SO many different
things going on, and reactions and responses etc etc.I know I’ve asked about the Ca 19-9 before and they (the Drs) only use
it as a “guide”.My husband (who has Stage 4) has only ever had SLIGHTLY high numbers–so I wouldn’t put “all your eggs in one basket” so to speak by basing solely on
those numbers.Hope that helps
DorienHi all,
I am very new to all of this, as my mum has only recently received her diagnosis of ICC. Initially we believed that the mass in her liver was benign as all of her tumour markers were within the normal range. I was wondering whether this is a common occurence? I have read a lot on this site about CA19-9 and CEA being raised in CC. How is it that someone could be at an advanced stage of this cancer and have normal tumour markers?
Many thanks to you all. This site is so helpful and reassuring.
Jules.
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