StageIIIb IDC Her2neu+++ and scared

lexigirl · 11-19-2005, 09:38 AM

Hi to all,

I am so happy to have been given this website address!
I am truly finding comfort in all the posts I read.
I am so frightened of the diagnosis I have recently been given. I guess I am searching for some reassurance of someone in my similar situation that has done well.
Thanks so much for any responce

Lexigirl

jojo · 11-19-2005, 10:16 AM

First of all, take a deep & slow breath... We all have been there, the beginning can be so overwhelming and you must be feeling so frightened right now.

You will be taking one step at a time... not necessarily in order & not all of them, depending on your treatment plan: chemo, surgery, rads, reconstruction. Given your diagnosis, your medical team will be taking good care of you. If you focus on one thing at time, you will not feel overloaded.

There is plenty of stage 3b ladies here that have been able to be in remission, since their original diagnoses.

Please feel free to come to us with any questions / comments. Keep us posted, as we do not want you to feel alone in your cancer battle.

tammymarie1971 · 11-19-2005, 11:52 AM

Lexi..You must be so scared and overwhelmed at this point..I can say don't be scared but that won't help you....time will...once you get adjusted to what your life will be now and the shock settles down..things will get better...I can promise you that!!! THIS IS NOT A DEATH SENTENCE!!!! Do your research if you can...I remember being too scared to look up too much stuff because I didn't want to hear horror stories!! Well that is in the dark ages now..There is so much new hope with herceptin and the new treatments coming that breast cancer will be soon treated as a chronic disease...NOT A FATAL ONE!!! So take care Lexigirl and post often when you need pick-me-ups..when you feel like things are too much..I'm sure someone will say just the right thing to help you out!!
Tammy

lexigirl · 11-19-2005, 12:05 PM

Thank you for your kind response. I am overwhelmed and scared. I am trying to hold on for myself, my husband and kids. I look forward to new info and all the wonderful postings to give me encouragement.
Thanks again,
Lexi

11-19-2005, 01:32 PM

Hi Lexgirl... I was dx'd with StageIIIb IBC and IDC back in Dec of '99. HER2+++ ER+ PR-. I was 50 at the time.

Didn't get Herceptin from the get go...as is so readily available now... But, when I had recurrance to mediastinal node/s, spot on lung and spot on pelvis (July 2002) the combination of Herceptin/Navelbine did a great job in just two months.

Tho' I have had brain mets for the past 3+ yrs, I remain without progression in the rest of my body.

Today I am doing well and feeling well, although I have been to the edge emotionally many times these past six years. Great support and up to date information / treatment has seen me through... and I hope that will be your experience as well.

hugs,
pattyz

11-19-2005, 03:02 PM

Hi, Lexi--my mom was diagnosed with Stage IIIB with chest wall involvement, HER+++ in 2002. We were terrified at the time. She's been on and off of chemo and Herceptin for 3 years, had a recurrence to the lungs and spine, and a pleural effusion that was out of control for awhile. She has failed a couple of chemos and hormone therapies. All that being said, her last scans were NED after nine months of Taxotere/Herceptin. So hang in there--it's aweful now, but it will get better as you go along and it's not such a new shock. And there is hope--after reading the prognosis for IIIB, there was no way I thought she'd be NED at this point, but she is.

Good luck to you!! This site is a great source of information and support.

Best regards,

Stephanie
daughter of Marie

Sheila · 11-19-2005, 03:36 PM

Lexigirl
You have come to the right place..there are alot of Stage IV survivors on this board....you are so lucky to be diagnosed now and not a couple of years ago when Herceptin was not an option unless you were Stage IV....take a deep breath and think positive...you are treatable...feel free to ask anything here...someone has been there before, that is what makes this such a wonderful place to go when you are scared, sad, overwhelmed....others can help with your fears, your treatments, your new life with breast cancer....it is the best place to ask questions.

11-19-2005, 05:10 PM

Lexi,
This is wonderful site. You will get all the encouragement and support that you will need.
I feel like such a wimp-- I was dx'd 3/04 with stage 2B, her2 postive, er/pr neg - 4 of 18 lymph nodes invloved, had 2 surgeries, chemo and rad.-- currently on herceptin and will be for a year--( started in June of '05)
I'm 65 years old- though I don't look it !!!! and certainly don't act it !!!! I too am fearful of my future. I have 3 gorgeous grandchildren who are the light of my life and I fear that I won't get to see them grow up. So many of you gals are so young and have young children.
I feel fortunate to be on herceptin and know that it may be the insurance policy that I need and hopefully it will work to kill any residual rogue cells that may be " lurking" around. I'm a very postive person, very active at my local "Y" with aerobics, swimming, etc.- -- just bought a " hot"new car. etc. but still fearful at times. I don't know if that fear ever really goes away. Every time I feel a twinge in my head I think it's probably brain mets or an ache in my bones, I think it's bone mets..
But I will tell you that I am living my life to it's fullest right now and whatever comes along I will deal with. Whatever I need to do I will do it.
Keep the faith and you will do fine. Everyone here has such a courageous story-- these women are truly amazing and you will beat this. You are in my prayers, Lexigirl -- God Bless,
Carol

lexigirl · 11-19-2005, 05:40 PM

You all don't know the strength you are breathing into me. Your words of encouragement are such blessings. While I am so frightened of what my future holds, I see some light. What a terific group you are. I am typing this through tears and I just want to say that I am thanking Jesus for all of you and I am asking for Grace to be upon you all.

lexigirl

11-19-2005, 07:57 PM

Welcome to this site! I tried to login but it wouldn't let me so I am going to post anyway. I was diagnosed in March 2001 with IBC (inflammatory) stage 111b. I have been in and out of chemo for these past 4 1/2 years. As far as we know I only have skin mets. No organ or bone involvement so doctors tell me I am still a stage 111b. Its not an easy road but I am doing well. Let me know if you need to talk to me or e-mail off the board. hugs, Sandy

Val Pfeiffer · 11-19-2005, 09:21 PM

hi Lexi--
If you have time, you can read the story I wrote -- it's at the top of the topics on this board--it's full of hope and info about great things happening in the field of breast cancer treatment. The story can also be found at my website, which is where I kept a journal that my friends and family members could read to keep up with my progress. Something in there may help you, who knows? :-) The site is:

http://journals.aol.com/valleygirlvn...CancerUpdates/

Look for October 10 entries for the story. Good luck and keep your spirits up!

Val

lexigirl · 11-19-2005, 10:48 PM

Sandy,
I would definetly like to talk some more about your diagnosis and tx. sounds really similar to mine.
Thanks,
lexigirl

lexigirl · 11-19-2005, 10:53 PM

Val,
Thanks for the post. I hope you are doing well. This is an amazing group.

lexigirl

Alice · 11-20-2005, 09:52 AM

Hi Lexi,

I love this site for many reasons. If you need encouragement you will find it here.If you have questions if there is an answer you will find it here.The people here are much more positive than on other sites I have been to (I don't go there anymore).If there is a contraversial thread where people just get bitchy it doesn't seem to last very long ( I also don't go there).So welcome!

lexigirl · 11-20-2005, 10:17 AM

Alice,

Thank you for the positive response. This has been such an outlet for some of my fears. I feel some real hope and encouragement. I showed my husband all the wonderful messages and he thought it was really neat.
lexi

lexigirl · 11-20-2005, 12:09 PM

Dear Sandy,
Would definetly like to talk.
Thanks,
Lexi

michele u · 11-21-2005, 06:55 PM

Lexi,

I was dx in August 2003 with stage 3b and 34 pos nodes. I went through the Herceptin trial and NO recurrence yet!! Please feel free to email me mulmer@mainstaycomm.net I was 39 at dx.

Audrey · 11-22-2005, 03:43 PM

Hi Lexi! I was diagnosed in 2001 Stage III, 11+ nodes/Her2+...36 yrs old at the time with 2 little kids...Was soooo scared, but received good treatment--A/C, Taxol, radiation and Herceptin for 1 year and have had no recurrence! Had a fabulous time celebrating my 40th birthday in June and still thank God I'm doing so well....I sure didn't have much hope in the beginning...Keep the faith, stay strong and positive! We're here for you!