My Profile/ Its Scary

[janet/FL]

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]

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]

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 .

[Chelee]

Dawn, Your DX is very close to what mine was/is. I am stage IIIA, Her2/neu, Er & Pr positive, 5 of 16 positive nodes.

Its very overwhelming and darned right scary when you get that first DX. Your head is spinning. Your life is turned upside down over night. So go easy on yourself. I think we all know what you mean about trying to figure out everything the doctors are telling you. Its alot of information to take in.

I am so glad to see you found this board. Thats a major plus in your favor! There are some really knowledgable people on this board. And don't worry about asking too many questions. As far as I am concerned...you can't ask too many. Everyone is here to help and learn...and support each other.

One of your posts said for the most part you stay positive & upbeat but occcasionally that creepy little thing sneaks in. Believe me...I know I can relate to that...and I don't want to speak for the others...but I am sure it happens to them at times too. You have come a long way already...I see you have already had 5 of your 6 chemos. YEAH. One more to go.

In the last six months that all this has happened to me...I can't tell you how many times I have been up, and then down a couple days like you said. It happens. Some days I will actually feel like I don't have bc and all is right with the world. You are going to have lots of good days...and some not so good. I think its important to let your feelings out. Try NOT to hide them from everyone like I have tried to do many times. I have learned if I feel like a good cry...darn it...I cry! And I always feel better.
Holding in all your feelings doesn't do you any good. I realize you don't want to break down in front of your kids....that i understand. But believe me...you will go through many different stages through this journey.

So when you say its nice to know your not alone in these feelings...no your aren't. Not even close. We all understand all to well.

If you hang around here long enough...you will see many encouraging posts from other her2 gals. You will get lots of support here.

Sending your warm & healing thoughts.

Chelee

[snoopy]

Hi Dawn

I'm another one with a very similar profile to you -Stage 3. 4.5cm & 2.3cm Ductal - 9/15 nodes HER2+++/ER+/PR+..... - diagnosed in November 2004 when I was 41. I didn't think I'd be still around to see christmas 04 let alone be here today feeling (most of the time) semi human again, NED - and long may this continue. I've had chemo/rads/a years herceptin and an oophorectomy (thats the short version - I never do things by half and have had many problems en route).

My children were a little older than yours at diagnosis (8&10) - its really hard having to put them through all of this - but in a weird way having them has really helped me get through bad times - what ever happens I (and you) are laways Mum - smiles and cuddles are priceless.

Often liken life with BC to living on a rollercoaster - the highs and lows can be extreme and the speed with which I find I can lurch from one to the other is truely frightening and yes the smallest thing can set this off - I really relate to what you say, I'm sure all BC patients - what ever the diagnosis do to some extent. It does get easier as time goes on - I remember be told this when I was newly diagnosed - yeah right I remember thinking, but it really does.

Forums such as this are my lifeline, I'm so glad you found this one - the amount I have learnt from others is amazing (I don't post huge amounts - I tend to just "read") - allows me to ask questions of my Onc/Surgeon and feel that I have some (OK a very small amount) control/involvement in the management of my BC. Only other cancer patients actually know how a cancer patient feels.

If it doesn't sound too odd it almost feels "fortunate" to have HER2+++ disease as this is an area of intensive research - and positive results - the herceptin in early disease studies etc. etc.

It is hard to come to terms with a "poor" prognosis. I keep trying to remind my self that the figures we get quoted are just statistics - population studies - no one knows which side of a survival line they will fall. Just try to live my life as well as I can, and live it now. I (and you) will do it better on some days than others.

Good health to us all.

[lkc Gumby]

Hi Dawn,

I am another stage IIIer.
Dxed June 05 with Stage IIIC , 12/14 pos nodes, er/pr neg, and Her +++.
They iniitially tied a partial mast. , but sinec surgical margins were not clear had a MRM right breast June 30, 2005. started DD A/C x 4, then Taxotere evry 3 weeks, with Herceptin, then 6 wks rads-4 fields, then 1 wk rad boost to scar.
Still on Herceptin, but will finish soon.
Had a prophylactive left mast 3 weeks ago, which turned out to be atypical and hyperplasia, so thankful I pursued getting this one removed.
Had bilateral recon. at same time, and am happy with results.
Just placed on Tamoxifen for left breast abnormality.
Happy to say I am NED.I feel that Herceptin is a God send to us, and Lapinitib is right behind. So although our cancers are aggressive these targeted txs are quite effective for us HER girls.
I KNow when I was originally dxed I felt sooo alone, but actually there are alot of us out there doing really well.
God Bless and Good Luck.

Linda

[dawn]

Thank you Linda,

I have been doing so much better since finding this site. It makes you feel not so alone and answers a lot of my questions. Everyday, it seems like theres someone out there like me and doing so well. I have also been finding there are people out there with a lot more problems than I have. One thing Im really having a hard time with is health coverage in the world. When you are faced with a terminal illness and the emotional, physical and mental stress of cancer you should not have to worry about whether you can afford or get the treatment you need. It just makes me so mad. Im one of the lucky ones to live in Canada where we have provincial health coverage. The only thing I have to worry about is getting my anti sickness pills, which I have insurance for, but if I didnt our social assistance program would kick in so that you do not have to do without while you are sick. So Im learning that even though I have cancer, Im still a very lucky person to live in the country I live in and to have so many options available to me.
Linda, thanks for the email, Its great to know theres so many out there for support and help.

[dawn]

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]

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. :-)