My Profile/ Its Scary

dawn · 07-03-2006, 05:00 PM

Hi, I've just been diagnosed in March 2006 with infiltrating ductal carcinoma, 5.5cm stage 3 with 8/18 positive nodes. Im er+ and PR+ also her2nu+++. It gets a little confusing trying to figure out what the doctors are telling you. Im on my5/6 chemo treatments, ac and taxotere. I'll be getting 25 rads and will alsp be getting herceptin and hormone therapy. So far there is no NED but Im scared like you wouldn't believe. I have and 5 year old son and and daughter who just turned 2. I plan and pray that I can watch them grown into healthy happy adults but sometimes its hard. They say the younger you are the more agressive the cancer. I had my left breast removed on my41st birthday. But Im also getting conflicting stories on the er+, pr+ and her2 nu. It means a more agressive cancer but a more treatable one. Am I getting this right or am I totally off base. Any support and help would be appreciated. Thanks Dawn

janet/FL · 07-03-2006, 07:01 PM

Dawn
So sorry about the cancer but you will get good help and support here. With the ER/PR + you will be able to take the follow up drug for that, and with the Her2+ you will get Herceptin. You say you aren't NED, but is there any evidence of cancer? Are they taking any markers for the cancer and the her2?
Others can tell you more about these or just search this site for more information.
Hugs and prayers,
Janet

Bev · 07-03-2006, 09:35 PM

No real science here. Stage 0's can have problems. You are in the middle, so god only knows. I'm stuck in the middle too. We have no guarantees. We can only read the studies, and push for treatments we think worthwhile. So read on. Best of luck. BB

dawn · 07-07-2006, 04:27 AM

Hi Janet,
Im a little confused, doesnt NED mean no evidence of disease, what is the difference between that and evidence of cancer. Im still learning all this lingo.

janet/FL · 07-07-2006, 06:15 AM

Dawn, I am no expert, but I would think that if you were given all sorts of tests, now, they would find no cancer. That is, no evidence of cancer. You had it surgically removed. It does not mean you have no cancer. Cancer is sneaky and hides away in the blood and lypmpnodes, breast tissue, etc. That is why you will continue with treatment to make sure there remains no evidence of cancer. Evidence of cancer would be just that. The doctors would be able to find it in your body as they did when you needed the operation. The drugs you will take for being ER/PR+ and Her2 + are to try to kill off any of the cancer cells lingering in your body. THey will help your body fight them and discourage their growth.
Does this help? If not, please ask again. Cancer can be very confusing. I would say you are Ned and that all the treaments you are having are to make sure you remain Ned. Also, eating well, and exercising are other ways to help your body remain healthy.
Hugs,
Janet

tousled1 · 07-07-2006, 08:03 AM

Dawn,

I too am Stage III and right now NED and I plan on staying that way for a long time to come. You will get to see your children grow up. Try and think positive thoughts and just take it one day at a time.

dawn · 07-07-2006, 05:09 PM

Kate,

Thanks for the support. For the most part I stay positive, upbeat, happy and try to have the attitude that Im going to kick this think and beat the statistics but once in a while that creepy little thing sneaks in there while Im looking at my children and kind of takes over for a day or two. It really helps to know there are other people out there going through the same thing and Im not the only one with these feelings. I do plan on seeing my children grow up and being part of their life, after all no one can take care of them like mommy right? Thanks so much, I can feel the fog lifting just being on this site. It's amazing .

dawn · 07-07-2006, 05:14 PM

Janet,

Thanks for the info, Im starting to understand the difference I may be NED but I may still have cancer cells hiding somewhere in my body. So when someone says they are cancer free, how can they be sure? Or is there a specific amount of time? Is this the same as remission and what signifies it? Maybe Im asking too many questions or maybe there is no real answer here, Im probably just grasping at straws for something positive. This site so far has been giving me some confidence and answers for my questions. It is also giving me some questions to ask my onc next month when I visit, that I didn't think of asking before. Thanks for your help with the questions.
Dawn

janet/FL · 07-07-2006, 05:46 PM

Hi Dawn
I think you are starting to understand the difference as the terms are usually used. If someone says they are cancer free--well, I would understand it as NED. But if they want to state it as "cancer free" then that is up to them, I wouldn't argue. In remission would usually mean NED. Just new terminology. Since this cancer is sneaky, there doesn't seem to be a time limit for its return, but we know that after two years then five years, the chances of its return greatly deminishes. With the treatment you are getting as stage 3 A? is it? (With 3 b it could be a little more complicated) You can look forward to NED--whenever anyone wants to call it--ask your doc--and remain NED. He may prefer to look at it from a different perspective. I have never asked my doctor if I was NED. He just says it isn't going to come back. That is how he wants to see it--and so do I!
You are almost through the hard part of treatment. :-)

fitztwins · 07-18-2006, 06:00 AM

Dawn,
When I found out that I had frickin 17 lymph nodes, I thought I would goner for sure. I have twin boys. They just turned 4 at the time.

I truly believe that with all of the advances that we will be the new generation of Stage III long term survivors.

Your fears will be pushed back with time the farther you are from treatment.

deb-steph · 09-07-2006, 01:08 PM

just read your note. if you are estrogen or progesteron positive then the cancer is far more treatable. the wild card is the her2 which makes the cancer more agressive. now having said that i know a lady in my town who is her2 positive on the same regimen that i am now currently on and she is a 9 year survivor. i have 3 children ages, 17, 12 and 10. i too hope to watch them all grow and become who they are meant to be but the truth is i have to travel to ft. worth, texas for treatments and being on the road so much may be more of a factor in my death than the cancer. hang in there, you have so much strength right there in your own home.

dawn · 09-07-2006, 05:42 PM

Thanks DS.

You know today of all days I just needed that little boost that you just gave me. My 5 year old son started Kindergarden today and of course when I was at home waiting for he to get out all I could think about was how far will I see him go? Then spending so much extra alone time with my 2 year old daughter Im thinking, will I get to see her go to Kindergarden. I think your note came at just the right time. Even though all my results are clear, Im finished my chemo and due to start my rads in two weeks. Everything is looking good but you can't help but think about it sometimes.
Anyway, Im going to sign off and watch a movie with my wonderful hubby.
Thanks once again for the uplift
Dawn

deb-steph · 09-08-2006, 01:12 PM

glad to hear that i was helpful. all of us are in the same fight. there is a song out by lonestar (country) that is called mountains. the chorus goes " i've been around and i've noticed that walking is easing when the road is flat. God gave us mountains so we can climb." we are all climbing the same mountain just at different speeds and on different paths. keep doing what you're doing and change what you can and let God take care of the rest. hope the movie was good. i use movies as therapy for me and my kids. it's a way for all of us to connect that i find comforting.