I'm new and worried

inkblot said:

Hi gentleraven:

I've had several conversations with my onc. re the tumor marker testting. According to her, it's just a tool and the docs are trying to learn how valuable it is...or not.

A lot of women have had a jump in their numbers for no apparent reason. Still other's have had a recurrence or metastasis and the numbers didn't go up at all. Go figure! This indicates how unreliable the CA 27-29 can be as an indicator of any cancer activity.

Also, according to my doc, smoking, certain supplements, gaining/losing weight etc. can also change one's numbers. She says that "symptoms" are the only real indicator of what's going on in someone's body. Otherwise, the docs don't really know where to look/search. Symptoms, such as new, unexplained fatigue, changes in weight without known cause, pain, any new lumps, unexplained fevers, swelling/edema, rashes...the list is long actually. At any rate, my onc's philosophy is that if someone's marker's rise notably and continue to rise, then she begins looking for a reason with additional blood tests, CT scans, bone scans, etc.. She said that often, nothing is found to account for the high marker's and by the time all the testing and searching is done, (sometimes even before it's done) the numbers return to a normal range.

Keep in mind, as other's have advised here, that fluctuations within the normal range are just that, perfectly normal. If you go to www.nci.nih.gov, you will find some info, re the CA 27-29 tumor marker test which may be helpful. Also, if you go to google.com or any decent search engine, and type in: CA 27-29 or Tumor Marker Testing, you should find some good info about it, which may help calm your fears.

Rather than envisioning your young daughter without you, try envisioning her WITH you, as she grows up. A far more positive, pleasant and heart warming experience! I envision my son's future life experiences with me right there, enjoying every minute of it. I only got off track and into the darker thoughts, shortly after my dx but I put that kind of thinking away, very quickly. It serves no positive purpose. It makes us sad and depressed which can actually compromise our immune systems. It's just a part of our greatest fears but we can't afford to get stuck in that kind of thinking. While we're healthy and well and living our lives to the fullest, we have to make an extra effort, to rid ourselves of those scary, dark thoughts. All of us Mom's have had them at one time or another and your's is likely brought about by the fears of those marker numbers. But, chin up, because this too will pass.

I think, post cancer, we all become what I call
"fear wrangler's". LOL Developing effective ways to cope with what can become a paralyzing fear if not checked. Otherwise it will come to rule our lives, day in and day out. Pretty soon, we're no longer just afraid, we're terrified. That's not a good way to live our lives. We all deserve far better than that! I made up my mind, some time ago, that my cancer experience can take nothing from my life, that I'm not willing to give over to it. And I'm not willing to give much at all. Why? Because I've stared each scare, each "what if" in the face and have come to realize, through a lot of research, talking with experts and other survivor's, that little about cancer is "definitive". Statistics about whose most likely to have a recurrence or met is nothing more than that, because within the group composing those stats, there were exceptions. Stats about whose most likely to die from mets are the same. There are remarkable stories out there, everywhere, of survirorship beyond some
almost zero medical predictions/guesstimates. I know more than a few people who have had wonderful lives, and lived 20 and 30 years beyond their cancer experiences and died of something completely unrelated. Mostly they didn't live under the "fear umbrella". They picked up the pieces, put their lives together to suit themselves and got on with living.

I've resolved to do the same. I don't want to live in fear and miss all the good stuff. It's a process and doesn't happen overnight but with time and effort, we get there and you cedrtainly will too!

Please keep us posted on your next visit results and how things are going in general. Remember, we're all in this together here and few of us have things going on which someone else hasn't already experienced or is experiencing at the same time, so there's always understanding and support in the wings.

Love, light and laughter,
Ink