New to the Group
 

Hello everyone. I'm so happy to have found this support group. I have come across a couple of other groups since my diagnosis, but it seems to me that the HER 2+ status makes a lot of difference in so many things. I was diagnosed with high grade ductal carcinoma of the right breast back in April, 2010. I had bilateral mastectomies on 5/7. I had three separate masses in the right breast, the largest measuring 3.5cm. I had a right axillary node dissection at that time which showed 14 of 23 lymph nodes involved. My tumor is grade 3, ER+/PR+ and HER 2 Neu +++. I will be getting a port placed on 6/10 and my chemo will begin shortly thereafter. My oncologist has recommended a course of Adriamycin/Cytoxan followed by Taxol and followed by a year of Herceptin, but he states he will continue the Herceptin until I show signs of decreased cardiac function. I believe I will also receive Tamoxifen. Radiation will follow my chemo and my breast reconstruction is delayed until I finish radiation. All of this is more than overwhelming as I'm sure you all well know. I am a 52 year old registered nurse, who has truly never been sick much in my whole life. I am a runner, a healthy eater and never could have believed all of this could happen to me. To add insult to injury, my mammograms have been read as normal, even when I felt a large lump in my breast. Any success stories with statistics somewhere near as grim as mine along with coping strategies would be greatly appreciated. I really feel like my life as I know it has been snatched from me. This sucks, huh?

Re: New to the Group
 

Hi Tracie -
I'm sorry you are part of this 'club' but am glad you have found this site. There are many wonderful people here with lots of knowledge, experience, compassion and support. You've come to a good place.

You are so right... the dx really sucks and you have much to deal with emotionally and physically in the coming months. But you have also much to look forward to as a survivor. There are many success stories here and all kinds of reasons for hope.

It will be 9 yrs this June since I was dx. The road has been very bumpy and scary at times, but I've found strength and learning and many life blessings along the path. You will too.

It sounds like you are already leading a healthy lifestyle so you are going into this treatment mode healthy and strong. Keep it up, take time to rest, be good to yourself, come here for questions and support and to draw strength from the many wise women (& men) here.

I'm sure others will be chiming in soon.
Pam

Re: New to the Group
 

Yes, Pam really expressed it all so well, so I won't repeat, but you have come to the right place to draw comfort, ideas, and solutions. Godspeed on this journey. Ceesun

Re: New to the Group
 

Welcome Tricia. I'm sorry you need us, but you'll find lots of support here, so you've come to the right place. I know women (and a man) who had similar diagnoses to yours and are doing fine. You can do this. It's not going to be easy, but it's doable. Listen to all the good advice you are getting, because it will make your journey easier. When you are through with therapy, you'll find a "new normal" and with each year that passes, you will find the fear gets less and less "in your face". We will be with you every step of the way. It sounds like you have a good treatment plan.

Love

Jacqueline

Re: New to the Group
 

Sorry, I meant to write Tracie, but got it mixed up! Anyway: Welcome Tracie!!!

Jacqueline

Re: New to the Group
 

So sorry you have to join this club. I was diagnosed in 2004 with a worse diagnosis (7cm 11 positive nodes) but similar protocol to what they are suggesting for you. My breast cancer was also not detected on mammography and neither was my sisters who also had a large tumor (7cm). These early detection tests work for some but give a false sense of security for those of us where they don't work at all.

My sister and I were both educated, health and fitness nuts, had all our regular exams,etc. but this disease still hit us. So don't beat yourself up. You did everything you could and the sad fact is that it still happens to many women.

I also elected to say on Herceptin long past when they recommend but it made me feel secure----at least I was doing something. But I am now going to a breast cancer guru, Dr. Slamon (watch the movie Living Proof if you don't know who he is). He told me Herceptin probably didn't provide much protection for me after two years.

You will get through the Chemo/Rads fine. It is not as difficult as you probably imagine. I only lost 10 lbs during the whole ordeal and gained it back after treatment. My most favorite meal after chemo was won ton soup, miso soup or homemade chicken noodle soup.

Stay strong---you can do this!!!!!!!!!!!!

Re: New to the Group
 

Hi and welcome to our group
I was diagnosed four years ago and had about
the same treatment. It really is a slap in the face
when we are doing all the healthy things and this
happens. You will do fine, keep the faith and keep
us posted.
patb

Re: New to the Group
 

I am sorry that you have joined us. Everything is overwhelming right now. It does get better with time. I had a 2.5 cm tumor but 18 involved nodes. I couldn't understand why I had an average size tumor but so many nodes. It really brought me down and although I was too young to have a mamo, I still blamed myself for not finding it sooner. Unfortunately, cancer doesn't play by any rules.

I had the same treatment that you are having. I wish you the best during your treatment and I second Nancy, soup is the best thing after chemo.

Tonya

Re: New to the Group
 

Tracie,
you've definitly found the right website!! I'm almost 7 years out from Her2 pos ER/Pr neg 35pos nodes! yes, you will be there too! If you want to talk more my email is mulmer@mainstaycomm.net i would love to "talk"

Re: New to the Group
 

Hello Tracie~ I had the exact same treatment plan. I'm just about done with Herceptin. The whole process wasn't as bad as I had imagined. It isn't fun but it is very doable, you can and will do this. Email anytime if you have any questions...I have some tips that helped me through some of the "yucky" things. Good Luck~

Re: New to the Group
 

Hello Tracie,
Welcome and like everyone prior said - sorry that you have to be here...but as you said you have been healthy all your life and have taken good care of yourself.
That will only help to serve you well during treatment.

Nancy shared her wonderful story which should make you feel more positive about your future treatment.
Get on your gloves because you are going into the ring and kicking cancer to the mat.

Best Wishes,
jean

Re: New to the Group
 

Hi Tracie,

I'm so glad you found us but sorry for your diagnosis. There are many sucess stories here since herceptin and you can read many of them on my thread entitled "five years out??"...I hope you find it encouraging.

I had the same treatment as you although had a lumpectomy rather than a mast. The a/c was the toughest for me but is very do-able and really was'nt as bad as I ahd feared. It may seem like you'll never get through it, but of course you do. I'm five years out now, and wonder where the time went to:)
Just remember no matter how bad you feel, there is an end and life after bc!!!

Re: New to the Group
 

Hi Tracie ~
I'm so sorry for the reasons you came to this place however we are happy you are here and we will give you lots of encouragement and hope! Plus we have some super researchers here that always seem to find answers when someone really needs one.
I am similar except I was ER/PR negative. But lots of lymph nodes involved and 3 cm tumor. I had dose dense A/C (every two weeks) then 12 weeks with concurrent Herceptin. Then Herceptin for 40 more weeks after that. Also radiation and reconstruction. I will be hitting 7 years next week and have had no sign of a recurrence so far. There are success stories out there. I send you a gentle hug and please feel free to PM me anytime you have any questions or concerns. I'm not on here every day reading but I do check my email all the time.
Hugs ~ Ruth

Re: New to the Group
 

Tracie,
I had multiple masses in my left breast and 12 of 24 nodes involved. Do you believe that was 26 years ago? I also had aggressive chemo and was in a remission for 19 years. 7years ago I had a recurrance, but continue with a high quality of life with all the HER-2 txs. I am now stable with TDM-1 Best of luck to you!
Kathy T

Re: New to the Group
 

Dear Tracie,

I echo all that my 'sisters' have just mentionned here. I understand that all this is overwhelming, but I am sure you will make it as all of us have, there are sometimes ups and downs and panic gets us, but it is part of the road, do not worry things will surely flow. Be strong and we are all here to hold your hand, come to the board any time, we will be here to hear you and support you, this is a wonderful site.

Paty

Re: New to the Group
 

Hi Tracie, I am so sorry you had to join our group...but there is no better place for information and support when your dealing with Her2 bc then this board. I know how overwhelmed you must be feeling...we have all felt like that. It's so much to take in when first dx...your world as you know it has been turned upside down. But it sounds like you have a good team of doctors and a good plan of action. Stick around here and you will see how many success stories there are. Ignore any stats your onc has told you...or any you read online...they do not include so many of the newer drugs which includes Herceptin. Herceptin alone has changed that stats in such a big way for us Her2 woman. So hang in there, you can and will get through this. We are all here for you.

Chelee

Re: New to the Group
 

There's another member (joined us a little more than a year ago?) who also had 14 nodes affected. I believe she went on a (Seattle?) vaccine trial and got NED in less than a year.

Check out the long-time (and/or 'long-term') survivors threads using the 'Search' button on top. You will find many inspiring stories.

Getting a cancer diagnosis 'sucks'. But binding with fellow warriors equipped with state-of-the-art treatment method, we'll get through this ordeal together side by side.

Let us know how you feel and what you need. Someone on the Board will be able to get you the perfect answer. Hang in there. Help is on the way!

Re: New to the Group
 

I will add my two cents on the combination effort of therapy I have done (and many others that I have found have had success with).... as I wish I would have found this site earlier in my journey and read more when I was in your shoes (before I started my chemo/Herceptin and radiation) .... First book I would HIGHLY suggest you read --- is Beating Cancer with Nutrition --- it is a must! He explains how to keep your strength up during treatment with eating and taking the right supplements ---- I found it too late as I am reading it now (and I am finished my year of treatment!) soooooo wish I would have known it at your stage.

I was lucky I found mine much earlier - (see signature) but Her2+++ is still plenty heavy for a dx! It scared the daylights out of me --- this site really helps me deal with this and get all kinds of great information - as our Her2 is not like the regular type and it got really hard for me to hear my friends say - hey, you'll be fine, lots of people survive breast cancer - (duhhhh.... like I don't know that!?) but I was feeling that they didn't understand the aggressive nature of Her2 and I wasn't freaked out for no reason.

I also started reading and digesting all I could on dealing with cancer in a natural way --- as after taking the chemo, doing radiation and Herceptin for a year ---- I NEVER EVER EVER want to take it again. I am NED and I intend to stay this way - but not by doing what I did before - I have drastically changed my life, my diet and my attitude...

Bummer is I am still not back running - I sooooooo miss it - but I'm still too sore (they say its probably from the radiation and its normal --- not sure I would have signed up for it if I would have known how long I would be sore!?) - so not sure when I will feel up to putting on my runners again. :-( But am power walking, doing some yoga and just started swimming in the sea again as the water is warm enough now --- LOVE THAT! So, being super healthly (in my mind as I was before) to BHAM - Breast Cancer.... ! It is a shock, so I can relate to you there!

If you are on Facebook - I'm there - feel free to ping me (see signature) I have lots of photos posted of my life here in Italy - if you want to escape a bit! :-) Also, I have lots of info on diet, nutrition and pH - I can send it to you.

Hang in there ---- it does get easier but the road doesn't change - this is the landscape for us now and it will forever change you, but I hope you also find, like me ... that this road less traveled --- it will make you deeper, stronger, and even sexier in the long run!

Few of my favorite sites with loads of information:

http://www.i-amperfectlyhealthy.com/index.html
http://www.cancerfightingstrategies.com/index.html
http://www.carcinomacancer.org/cance...ph-factor.html
www.drday.com
http://www.cancerrd.com/
www.livingfoodsinstitute.com
http://cancermonitor.blogspot.com/20...reatments.html
http://www.creativehealthinstitute.com/wheat_grass.htm
http://www.healthquarters.org/
www.gerson.org

Favorite Books:

o The Cancer Battle Plan Sourcebook (this is the updated version) - by David Frahm
o Crazy Sexy Cancer Survivor – by Kris Carr
o Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS
o Eat to Live – by Joel Fuhrman, MD
o The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM
o A Cancer Therapy – Results of Fifty Cases – by Max Gerson, MD
o 50 Essential Things to Do - Greg Anderson
o (on my wish list to read: Suzanne Somers - Knock Out for Cancer)

Re: New to the Group
 

Hi Tracie. and welcome to our group. You and I have many similarities: I had 12 out of 14 pos nodes, had a normal mammo a few months before, dxed at 49, ate healthy, exercised, am a nurse (did onc nsg straight out of nsg school ) and got dxed w Stage IIIC dx.
HER pos tumors come up at of nowwhere....
My tx plan was AC X4 then Taxotere X4 ( I am er/pr neg which is often time preferred in Hormone neg tumors and HER2 pos. I had herceptin and did 5 fields of rads /d x 35.
Now the GOOD part is I just celebrated my Five yrs " out" and I am pretty much back to me.
I know it's a shocker, but you'll get through it. This is a great forum. PM me if you have any ?.
Take Care and one day at a time.

Re: New to the Group
 

Tracie,

Welcome to our group. Hope you are feeling better today.

Amelia