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[Jean]

Stephine,

Welcome to this wonderful site. So glad you have joined the site and it is wonderful to hear that you are 8 yrs. out! Your history and updated information will be appreciated by all on the site. This is a fantastic group and we truly learn so much from each other. Welcome Sister!

Hugs,
jean

[Vanessa]

Hi Stephanie,

I would also like to welcome you to this site and wish you all the best!!!!!!

[stephanie59]

Thank you to all who have so kindly responded to my request for feedback. Finding this website and listening to all of you prompted me to call my oncologist today and have a chat about being more proactive regarding recurrance. I only see him once a year now and like Bev's onc, he feels scans are not as reliable as symptoms. Although he did not have data regarding future survival rate at 8 years out, he did tell me that there is only a 2% recur rate for HER2+ at 10 years. So my husband did the math and it looks like I have over a 93% chance of making old bones. I did ask him about late use Herceptin and he did not think it was necessary. Even though I believe Herceptin is a magic bullet and I advocated for it for years without success, he made a comment that made me feel less anxious: "You know, Stephanie, many HER2 women have survived without Herceptin".

I am really glad I made this call because it got him thinking about other issues I have. My mom had cancer at age 62 (and died at 78 from CHF) which did not put me at higher risk, but I had a cousin on my mom's side who was first diagnosed at 40 and died in her early 50's. So he is going to have me tested for heredity genes just in case. He told me he is more worried about me getting cancer in the other breast than he is about a recurrance.
Not sure if that made me feel better or not

Anyway, it got me thinking about how important it is to be able to talk to your oncologist and to feel ok about calling to ask questions even 8 years later. He always returns my calls and never makes me feel like he is rushing to get off the phone. If any of you out there do not feel ok with your onc, I urge you to find a new one. They and the nurses become a serious lifeline to survival. When I went from seeing Dr. Shiftan 4x a year to 2x and then once, I was really scared. It's like when chemo ends and even though you are so glad, it's still scary because you no longer have the feeling that the bad cells are getting zapped and what if they aren't all dead???!!!

Anyway, sorry for being so chatty. All these years I haven't really had anyone to talk to about all this so I guess I'm venting 8 years of concerns. Bless you all, Stephanie

[Cathya]

Stephanie;

Welcome and thank you for posting. Most importantly, congratulations on 8 years NED. I am finding your posts and the replies so comforting and encouraging. I have taken herceptin but am one of those who suffers with heart issues and it looks like I will be taken off it again. Now I realize that even the amount I received is a wonderful help and perhaps all I need. It is amazing to me that when I was diagnosed in 2004 with a 3 cm tumor I wasn't even going to get chemo as I was node negative. It was only after a second tumor was found in my clavicular node that things changed for me and I was given AC and Taxol. I have often wondered how many are like me.....her2+ with spread in a different direction than expected. I was only tested for her2 at that time because I requested it after reading so much about herceptin. You were so ahead of the game back then!!! Congratulations.

Best regards,

Cathy

[RobinP]

''Unlike ER-positive breast cancer, in which events are strung out over the course of 10 to 15 years, in HER2-positive breast cancer most of the events occur in the first five years and a lot of them occur in the first couple of years. That is part of the reason why, in each of these studies, we saw a dramatic benefit early on, even in the first year (Perez 2005b; Piccart-Gebhart 2005; Romond 2005)"

Survival after five years for her2+, er-, pr- is a milestone, not a guaranteed cure, but a certainly a positive milestone.

[Carolyns]

Stephanie,

I was diagnosed in 89 and received CAF. Then in 98 in the other breast 6 months after the birth of my son and had a mastectomy with no further treatment due to the early stage of the disease. Now again in 2006 with mets. treatment- Gemzar, Herceptin, Zometa.

The second and third occurences were not identified through follow-up from my cancer doctors rather through the insistence of my OB GYN. In fact, althought I was told (and knew) that it is not good to have BC twice before forty, I was never told what to do about it. Last year when I presented with two lumps above the right implant (8 years out) both my surgeon and onc. said it was nothing. I was so happy. Then my OB GYN insisted on an ultrasound. She said, "you know your body and you're getting a test to prove whether or not it is nothing". That is how I was diagnosed and why I am in treatment today.

Through all of this I have looked and felt great. I tried to push my doctors to follow me annually after 5 years. My doctors have always commented on how fit I am and how great I look. I don't think that they beleived that I would ever get sick and neither did I. I pride myself in taking good care and although I was not worried I felt that if the general population finds it normal to go for an annual check-up then I should see my BC doctors once per year too -even beyond 5 years out.

I wish than no one ever got cancer a second or third time. I also wish that I knew the appropriate follow-up after 5 years to make sure that if / when it did happen to someone else that they would have the chance to catch it sooner than later. I don't think my BC doctors knew (other than the tumor markers..read down for that info.). I was told later by someone that my OB GYN's mom had a recurrence of BC localized to the chest wall many years out from her original diagnosis. Thankfully hers was caught early and I believe that she has done quite well many years out. I beleive that my OB GYN's personal experience and knowledge saved my life twice.

Regarding blood work. My GP began doing my blood work and markers began to rise but he missed them. I guess no one looked at the blood work once it was sent back from the lab and then over to the Onc. Water under the bridge now but at some point (unsure when) the markers began to rise.

I hope that you never have to deal with BC again but I know that it is wise to stay alert about your health and enjoy life to the fullest along the way.

Carolyn

[Kathy T]

Steph,

I did not recur for 19 years--then to bones and lung--It was the original breast cancer as they did a bone bx. at the recurrance. I am amazed too, but it happens.

Kathy T

[Susan Rankin]

Hi,

Thank you Stephanie, Joe, and Becky for your reply. I feel so much better after reading your message.

I had a lumpectomy in August 2004, 1 cm., sentinel node was positive, Her2+++, Er+, Pr+. I had Adriamycin x 4, Taxol X 4, and Cytoxan x 4. 33 Rads, and one year of weekly infusions of Herceptin which my last one was June 20, 2006. I am now taking Femara. I fell into the window to get Herceptin as I had just finished chemo in March.

I am happy to hear there are survivors five years out.

Susan