HER2 positive and 10 years out?

DianneS · 09-12-2009, 04:26 PM

Hi ladies,

I am just wondering why my onc gave me an '80% no recurrence in 10 years' prognosis.

I would like to talk to anyone who is 10 years out with her2 pos and no recurrence.

I guess I am really scared and also wondering why I did surgery, chemo and herceptin? What chance do I have to seeing my 65th birthday? Based on stats?

Another question: I started chemo (taxotere, carbo and herceptin) in Nov. 2008. I had surgery in Sept. 08 - dbl mast. I could only do 5.5 tx of the TC regimen out of the 6 usually done. Did that put me at risk, waiting?

Plus AI's/Tamoxifen won't benefit me much -4-6% as I am weakly ER positive. So I'm in THAT club as well.

My anxiety is maxed out and I wonder why bother doing anything at all if they can't even give me one patient who is around at the 10 year and plus mark. They say 'they are out there' Where or where are you?!!

Is there anyone who is approaching the 10 year mark w/o recurrence?

I need a shred of hope. Keep wondering if I've had one more year or one less year.

Dianne

Ruth · 09-12-2009, 05:11 PM

Diane - I have a good friend that is 14 years out with no recurrence. She was diagnosed at age 29. She never had Herceptin...did a clinical trial with stem cell transplants/high dose chemo at Duke. Her tumor tissue was retested a few years ago for research reasons and she was Her2 pos. She was stage 3. They are out there but they usually don't post much on websites. I also know of another lady living in Atlanta that is 10 or more (was stage 3 also) and doing great. She doesn't post on internet but does go to local support groups to tell her story.
I'm working on year 7....
Hugs ~ Ruth

Becky · 09-12-2009, 05:19 PM

Well darling girl, I am stage 2 and I just hit 5 yrs so I'll get back to you in another 5. I had nodes involved and extensive invasive.....

Stay tuned

Mary Jo · 09-12-2009, 07:35 PM

I'm 4 years NED, node involvement and doing super duper....In 6 more years I'll post again. Stay strong...

Congrats to you Becky on your 5 year cancerversary...as I always tell you .... I'm right behind you....keep movin' forward sister.

Mary Jo

Cannon · 09-13-2009, 06:07 AM

I'd also like to point out that "recurrence" does not equal death. And imagine what kind of treatments they will have in 10 years!

Rebecca

DanaRT · 09-13-2009, 06:42 AM

I have wondered this myself many times. A new co-worker, Susan, noticed my pink ribbon pin. She told me she had breast cancer 16 years ago. She was 30 years old. Susan was stage ll. She has no idea what Her2 means, they didn't test for that back in 1992. She is well, healthy,beautiful.

I am approaching my 2 year anniversary. Anxiety is running high. I keep reminding myself that Susan is doing great!

Love,
Dana

karen raines hunt · 09-13-2009, 09:21 AM

HI,

I scan through the site a lot, but don't post very often. I am 4 years and 5 months from my diagnosis date and am NED! As you can see from my signature, I had a huge tumor.......measured 12 cm x 8 cm, I had extensive vascular and lymphatic invasion and 2 positive axillary nodes. I had a bilateral mastectomy, adriamcyin, cytoxan, taxol and 1 year of Herceptin. I also had 35 does of radiation, 1.5 years of Tamoxifen and am still on aromasin. I say hooray for Herceptin!

chicagoetc · 09-13-2009, 04:27 PM

Dianne,

I'm confused. Isn't "80% no recurrence in 10 years" relatively good given how poor the prognosis was before for HER2+ cancer? I would think the odds get even better after ten years.

Maybe I'm missing something here.

Melanie

Laurel · 09-13-2009, 05:09 PM

Dianne,

I really think you must just say, "ah, to hell with the stats! I'm stickin' around, thank you very much!", and move on. You are a 20% er, girl.

jml · 09-13-2009, 05:36 PM

DianneS, please don't put yourself through another moment of anxiety, playing the numbers game & second guessing the choices you made with the best information you had at the time, not to mention under MAJOR STRESS.
And Rebecca is absolutely right - "recurrence" does NOT mean "death"!

I may not be 10 years out, only 71/2.
And I've experienced not 1, 2 or 3 recurrences, but 8...
enduring my 8th as we speak.
So, I've essentially been living with active disease for all but 1 year since my diagnosis.

Like many of our sisters on this site, I'm surviving and thriving, in spite of this disease.
And in the past 7+years that I've been maneuvering through life with this disease, treatment options have evolved, been developed & made it to market, and changed the picture of Surviving with Stage IV disease.
I know that they will continue to develop more & more sophisticated drugs & treatments to make this disease liveable, so that those of us that must live with this disease can do so gracefully, actively & happily.

Also, I wanted to share this video interview that I did with Emory Magazine. I pasted the link to the video article below. I was really honored be able to share my story...it's OUR story, and I hope I've honored all of the Stage IV'ers Surviving & Thriving & represented us well.

Personally, I think I look chubby & puffy-eyed, but I'm putting my narcissitic, self-consciousness aside, because our story is one that needs to be told!
http://www.emory.edu/EMORY_MAGAZINE/...cas-video.html

http://www.youtube.com/watch?v=qERqUy40d78

Keep the Faith~

Jessica

mamacze · 09-13-2009, 06:13 PM

Hi Diane,
You sound discouraged, depressed and scared - all feelings that are no stranger to the girls on this board. We can all relate - sometimes these feelings can just be overwhelming. Thank God you have a great sounding board here!
It won't take long for the survivors to start lining up; there are plenty of them. I for one have to throw my hat in the ring; as you can see by my signature I have stage 4 cancer; Her 2 +++; I have metastasis to my lungs and liver. I am 5 and 1/2 years post metastatic diagnosis - I have been NED for 5 1/2 years with no reoccurrence after my initial treatment with Herceptin and Navelbine. I am surviving and thriving.
The girls here will help you reach out of your dark spot and find a bucket of light and hope that is well within your reach.
Love and Hugs,
Kim from CT

Greg · 09-13-2009, 08:10 PM

Hi Dianne,

Someone on this board told me once that many of the folks that come to this board never or seldom return after their treatment. I don't know how many of the fine people on this board have been here for 10 years. When my wife was first diagnosed we read many, many posts on the internet and did literally weeks of research. Mostly what we read were horror stories about how badly people fared during chemo, side affects, etc. Our Oncologist reminded us that most of the time it is the patients that are having problems that are posting on the internet, seeking some sort of information that will help them through the ordeal. He also said the people that don't have much trouble are less likely to show up on internet sites. This made sense but our surfing definitely caused us much apprehension. This particular board has and still serves as a great source of information and support. We really don't visit many other boards besides this one. Anyway, luckily for us my wife did very well during chemo and so far so good.

As for missing your last chemo, our Oncologist (well respected from Seattle Cancer Care Alliance/University of Washington) also feels that as long as she recieved any chemotherapy then the herceptin will do it's thing and that the amount and type of chemotherapy wasn't that vital. He did feel there is a synergy between taxol and herceptin so that is what my wife did, 12 weeks of low dose paclitaxol with herceptin and she will be on herceptin until April 2010. He thinks herceptin is the key. I hope (pray) that he is right.

It is difficult not to get too tied up in the numbers game. My wifes cancer is similar to yours although her tumor was 1.5 cm and she was stage 1, grade 3. She chose lumpectomy instead of mastectomy. Anyway, our Oncologist puts her chance of recurrance at 10 years at less than 10%, in other words more than 90% that she won't have a recurrance in the next 10 years. She now eats much healthier (mostly organic), exercises regularly and has just overall improved her lifestyle. I used to have to preach to her to use sunscreen, not anymore!

I don't know if this helps you with your apprehension or not, I hope so.

Take care,

Greg and Vickie

Gerri · 09-13-2009, 08:42 PM

Dianne,

We all have those moments when fear overwhelms us, as time goes on it gets easier. Hang in there, you will be breathing easier as each year ticks by.

To jml: Amazing video Jessica! Your tenacity and drive are awe inspiring....and without a doubt you are beautiful!

Thanks for putting this crazy world of cancer into perspective. Like so many other courageous warriors on this board you are living life to the fullest. You rock!

AlaskaAngel · 09-13-2009, 09:46 PM

In my point of view, it is very much a shot in the dark as to whether whatever chemo is chosen happens to be effective for a particular person's cancer. If it was that easy, we wouldn't all be wondering whether ours worked or not, and there wouldn't be differences of opinion about what regimen to use among oncs. I have never had trastuzumab.

Right or wrong, I "rely" more on the other things I do. Consistent exercise is known to improve the odds. None of my health care providers was at all interested in monitoring the vitamin D level back in 2002 when I was treated, but I was, and have I consistently worked on getting as much natural vitamin D (both through the eyes and through the skin) as possible. I stick to eating organic food to avoid all the hormones, antibiotics, pesticides, and herbicides that are in the food chain. I try to eat a diet that is balanced for omega-3's and omega-6's. I avoid simple sugars to keep a low glycemic level and eat more whole grains, vegetables, and fruits.

The protective effect of chemotherapy falls off after the first 4 or 5 years, but positive behaviors can continue long over the years. I've never understood why we are given estimates for 10 years out in deciding about doing chemotherapy because the effect of chemo falls off so much after the fifth year anyway (although that is a generalization that applies to all bc, and they don't seem too interested in figuring out how it applies or not for HER2 positives). In our society people often would rather choose a short-term effort like a pill or chemotherapy than change behaviors.

Best wishes,

AlaskaAngel

sarah · 09-13-2009, 10:52 PM

Hello,
I second Rebecca's comment. recurrence doesn't mean death. I had a recurrence 5 years out but I wasn't given Herceptin at that time and now it's 10 years since my first diagnosis. I think some of this stats are old. Also why can't you be in the 20%? exercise and keep positive and above all, enjoy life. Don't worry about the future, it's here soon enough! So many new and better drugs are coming out that soon cancer may be totally curable.
hugs and love
sarah

TSund · 09-16-2009, 03:03 AM

Dianne, I think you should dwell on the positives of being one of the lucky women that received the opportunity to take Herceptin with early stage breast cancer. A few years ago that was not even an option. It is a major game changer, and no doubt will continue to be long term. You are doing well...celebrate this and make the most of it.

WolverineFan · 09-16-2009, 07:09 AM

I just wanted to chime in and give a big THANK YOU to all of you who wrote in on this post and had such a positive attitude, particularly the surviving and thriving stage 3 and 4 patients. You all are simply amazing and provide more support than you may know. I at times have anxiety about the recurrence side as well, which I think is only natural, but I am so grateful mine was caught early and that I have the benefit of taking Herceptin. God bless you all!!!

Gabrielle · 09-16-2009, 04:24 PM

Hi Dianne,

I was diagnosed Dec 22 1999 -- so in just a few months, I will be 10 years out.

Stage III; infiltrating ductal; HER2/NEU, estrogen negative; 5.2 cm tumor; 9 out of 21 nodes positive for cancer. I was 44 and my kids were 12 and 9.

Treatment was 4 rounds of adriamycin/cytoxan; 4 rounds of taxotere; 25 hits of radiation; 52 weeks of Herceptin. I had a mastectomy; prophylactic mastectomy on the good breast; and a prophylactic hysterectomy.

I work full time (CPA); teach 2 college classes and am going to school for my doctorate. My kids are now 22 and 19.

Keep the faith,
-Gabrielle

DianneS · 09-16-2009, 06:01 PM

I will write more later - just wanted to say thank you for your posts thus far. I am wondering if the AC regimen provides add'l protection? I didn't get it. I will look again to see how many of you had taxotere, carboplatin and are still NED. My onc told me that carboplatin/herceptin had a synergestic activity.

Talk soon,
dianne

Sherryg683 · 09-17-2009, 04:44 PM

In December it will be 4 years out for me and I was diagnosed stage IV. I have been NED since my first round of treatment and feel great. I met a lady recently who came up to me and told me that 10 years ago, she was diagnosed stage III, did not even have the benefit of doing Herceptin at all. She has been in remission since her initial treatment. You have a very good outlook. Of course you are scared but your fears will lessen as the years pass..sherry