I'm new and worried
I am 38, single mom of 3 girls, 20, 16 and 3. I was diagnoised with ductial carcinoma (can't spell) in August of 2002, had a masectomy and then 4 rounds of chemo with the red stuff, and 4 rounds of taxol and then 26 sessions of radiation, had 2 tumors one was 2.5 cm, and the other was 1 cm and 11 out of 21 lymph nodes positive, was estrogen and progestrone negative and Her2u positive, so far have been in remission but am getting worried again. In December 03 I took a CA 27.29 and the level then was 15 and then took another one in the last week and it was up to 22.6, doctor's office says it's still in the normal range and that we start worring when it hits 32 but I'm worried because it has gone up. Does anyone know about this test. I know if the doc isn't worried then I shouldn't be but it's very difficult. I have been under some stress lately so wonder if this could be why the levels rose. I know it's still in normal range but I'm still scared. Any support would be great. I go to the doc on the 14th and will consult with him more then.
Thanks
Comments
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Hi gentleraven,
I had breast cancer 9/3/02 and I've had several problems, & I stay scare all time. I think that goes with it. I'm 59 now & I know your age & having 3 girls has much to do with it. Try to stay calm & think good thoughts. I know thats hard to do & every time you think of it you panic. so think positive and may God bless you & your girls.0 -
hi gentleraven, your last message sounded much more up beat. There are so many c-survirors out here and there is so much support here that it really helps to talk to everyone that's been where you have. Stay up-beat and think good thoughts and think of all of us who care. Keep us updated.God Bless Pads0
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Hi gentleraven. You really have to look at what is normal for you (I had a 8 cm tumor and was still in the normal range). Has your CA 27.29 been around 15 every other time (you should ask for copies of the results)? Also, have you changed anything in your diet or supplements lately? Other things can cause those numbers to rise. If you have consistantly been around 15 in the past, then maybe I'd have them repeat the test. It's excellent that you are staying on top of your care. Hang in there and let us know what happens.
Take care,
Susan0 -
Susan,SusanAnne said:Hi gentleraven. You really have to look at what is normal for you (I had a 8 cm tumor and was still in the normal range). Has your CA 27.29 been around 15 every other time (you should ask for copies of the results)? Also, have you changed anything in your diet or supplements lately? Other things can cause those numbers to rise. If you have consistantly been around 15 in the past, then maybe I'd have them repeat the test. It's excellent that you are staying on top of your care. Hang in there and let us know what happens.
Take care,
Susan
This is only the second time I've had this test so not sure what to expect just yet. Just worries me. As far as diet well I know it could be better and need to start a good exercise program and I have been under a little bit of stress lately. I have been feeling just fine just tired but that is about normal for me. I work a full time job and then come home and take care of a very energetic 3 year old which I wouldn't trade for the world. Otherwise I feel fine, got a great garden going out front which keeps me feeling happy and centered for the most part. I'll keep you posted on what the doc thinks. I haven't felt any lumps or anything either..0 -
Pads,ivy said:Hi gentleraven,
I had breast cancer 9/3/02 and I've had several problems, & I stay scare all time. I think that goes with it. I'm 59 now & I know your age & having 3 girls has much to do with it. Try to stay calm & think good thoughts. I know thats hard to do & every time you think of it you panic. so think positive and may God bless you & your girls.
Thank you so much for your reply. I pray each day for God to just let me live long enough to see my girls grow up and be able to take care of themselves especially my little one, she's the whole world to me, she keeps me strong but sometimes when I look at her and I realize that I might not be able to see her grow up my heart just breaks. I wonder what will happen to her, her only family are her two sisters and neither one of them is capable to taking care of her if something happens to me. Her whole world will crumble. Now I'm crying again. How do I stay focused and keep thinking positive???? I do not want to die, I want to see her grow up, to see her run across the beach, to see her first day at school. Okay I'm not gonna do that, I have to stay positive I'm going to be okay because I have to be. Sorry I got lost there for a second Pads. I'm just happy that at least now I have a place where I can express myself without worring about someone getting upset with me for having a weak moment. Thanks..
Felisha0 -
Hello gentleraven. You're under a "little strss"? LOL. It sounds like you have been through the torture of hell!!! You can really allow yourself to feel scared or worried.Whatever you feel is really ok. You are going through so much. Your best source for information about the tumor markers is your doctor. There are other criteria they use to determine if an elevation is a problem or not. Keep an open dialouge with him/her. If you are really worried call him before the 14th. Don't torture yourself. ANY stress you can possibly eliminate will help. The two of you are in this together or at least you should be. If you don't have an amazing relationship wiht your oncologist....find another one. Also..any chance of getting a mother's helper. You will not have to leave your child butat least you will have someone who can help. The local church or high school might be a good place to find helper. It does not cost as much as a baby sitter, you will still be with your child and you won't have to run around so much. Also your older children need a role. I know my kids love to feel that they have helped me through a rough day. The very best to you and I will keep you in my prayers. This is a wonderful site to come and vent or get some informatin. Keep in touch.0
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Hi, I also had that blood test once - but they don't do it anymore because in many cases, it is not really specific enough. For example, the count might go up if you have endometriosis. Mine was at 49 something then came down to 22 - and I was stage 1 no nodes. So there you go.0
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Hi Gentle,
I think that you should not worry too much about this test. I know how easy it is to say that but truly if your Dr. is not worried - then you should not stress yourself out. Our situations sound so similar. I am 37 and was diagnosed last year at 36. I too had the same chemo's and radiation with being HER2pos. I have 3 children, 9 & 7 year old boys and a daughter who is 21 months. I can't imagine leaving them either.
I am not too familiar with the test but I know from having tests done that they flucuate in the "normal" range - as do regular blood counts. There is a lady that posts here often that knows a lot about the CA 27.29 test and when she reads yours I am sure she will post. Her CA 27.29 had gone up but when they did scans and such they didn't see anything. My Onc. is a true believer that our own bodies give us the best indication of how we are doing. He doesn't weigh too heavily on that particular test. He wouldn't ignore it but he would take that along with any symptoms.
I'd love to talk to you anytime. I feel at times that incredible fear but then it subsides. You are truly normal in all of your feelings.
It is great to be able to come here and let it out. It's hard to stay positive for the children all the time...I know. This is like a big wonderful family that just helps you in any way possible.
Take care and let us know how it turns out.0 -
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,
Ink0 -
Dear Ink, I love your philosophy on putting your life back together and getting on with it! It's what I'm striving for to try to overcome the constant nagging fear--my onc also doesn't believe in tests unless there are symptoms, and totally discounts the value of tumor markers as they are so unreliable as indicators of recurrence. (I've finished chemo and am in the middle of radiation with Arimidex to follow.) Hope I can be as successful with this approach as you seem to be! Thanks for the encouragement. Diinkblot 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,
Ink0 -
I just wanted to say thank you to everyone that has responded. I do feel much better today. When I first found that lump over 2 years ago I know instantly that something was wrong, my gut told me this is not good, something's wrong. I am listening to my gut on this one too, I feel fine, a little tired but what do you expect from working a full time job and coming home and taking care of a 3 year old, but I'm not overly tired, I am starting to get energy back and am feeling pretty good overall.ivy said:hi gentleraven, your last message sounded much more up beat. There are so many c-survirors out here and there is so much support here that it really helps to talk to everyone that's been where you have. Stay up-beat and think good thoughts and think of all of us who care. Keep us updated.God Bless Pads
Thanks again for all the love and support you've shown me.
Felisha0
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