Survival rates for HER2+ patients

[MCS]

Hi everyone!

Does anyone have the link for the survival rates for us HER2+ ?

I was able to find stats for all breast cancers but not specific for us. I have searched in several sites and just cannot find

Thank you.


MCS (maria)

[chrisy]

good question...maybe somebody can track this down.

I have not seen these statistics, only references to "poor prognosis" but I think the real challenge is that the game has really changed with Herceptin and now, hopefully, Tykerb. Any statistics you see that are older than a few years ago for metastatic disease do not reflect the improvement in survival due to Herceptin.

Statistics for early stage Her2 are now absolutely invalid as adjuvant Herceptin has only been approved in the past year.

So I guess I'm saying, use caution with any survival stats you may find - if they are for the general Her2 population, they probably look far worse than the true picture is today. Stats for Herceptin or Tykerb trials may give a more accurate picture, but these would also be skewed.

Here's to blowing away ALL the "bad stats" and creating new positive ones!

[MCS]

Hi Crisy,


I hear you about the positive vibes.

From looking atyour response, did you have any symptoms between 02 and 05? How were the liver mets found three years later? a regular check up? I'm not sure if i see the whole picture.

What usually is amazing is how quickly this spreads or just says surprise to us and with a vengeance too. Like, guess who's back!

This is such a continuous battle for all of us

I did find information on http://professional.cancerconsultants.com which gave the results the infamous ASCO 2005. It is the results of the clinical trials for adjuvant. Maybe that will have to suffice for now?

You're right. We do have to look ahead.

MCS ( maria)

[R.B.]

And statistics are just that.

Diet lifestyle etc are accepted factors in risk reduction, so on an individual basis statistics are by no means the whole story.


RB

[tousled1]

I don't think we'll have any stats on survival rates with the use of Herceptin for some time. Herceptin is a new drug and they are still doing clinical trials on it. They are not sure if more is better or less is better -- meaning 1 year, more than 1 year, or 9 weeks. It will be interesting when stats do become available. In the meantime, all we can do is remain positive.

[chrisy]

I had no symptoms, my liver mets were discovered "by accident", or divine intervention - I had some stomach upset (which went away on it's own!) which got my doctor sending me for ultrasounds and eventually CT scans. This is how the liver mets were detected in August 2004 - actually, 2 years ago today!

We do need to stay vigilant, but remember, I did not have adjuvant Herceptin or for that matter, any chemo. I went from stage 0 to stage IV, so my case is very unusual. I've always been an overachiever!
Take care
Chris

[Joe]

Genentech has sponsored a trial called RegistHer which is a long term study of bc patients who are HER2+ . Unfortunately the results won't be published until 2009.

The concensus of opinion is that overall, women who are HER2 + have longer survival rates.

Regards
Joe

[Ceesun]

Joe, Longer survival rates with Her2?? Please clarify Ceesun

[Sherryg683]

I was wondering the same thing..do you mean longer survival rates than before...or longer survival rates than those that are not HER2+..sherryg683

[julierene]

I think what Joe was saying is that Her2+ have better prognosis than what we would have had in the past before Herceptin. I think we might have a better prognosis than the typical Stage 4. 60% of the Stage 4 women are HER2-. So for those women, if they have hormone treatments they can add to their chemos, they are probably in better shape than they were as Stage 4 before Tamoxifen. It's probably the same for us. Adding Herceptin to our treatment plan, makes us better off than we were before Herceptin.

Many of the Stage 4 data are probably before Tamoxifen and Herceptin are fully able to tip the statistics higher.

The triple negative women, are probably the ones who still maintain the 15% 5-year statistic. There isn't any receptor we know of to treat - however I am hearing some interesting stuff right now about other treatments for other less-known receptors. So if they don't respond to chemo, they are in dire straits.

I have seen first hand that a "triple negative" (er-,pr-,her2-) is super scary. There is a woman who I met when I was first dx. We were dx pretty much the same time and thought our stories were SO similar. Well, just last month when I was getting my Herceptin, she walked in and sat in the empty chair beside me. I recognized her!! She was a TON thinner, and she went from Stage 2a to Stage 4 almost 2 years later just like me. The ONLY difference was she was HER2-. She had brain and a lymph node mets. The thing I remember about her most was how she was obsessed about her diet. She has been a strict vegan since she was around 16. She is now in her early 50s. But for breast cancer, we are young - I'm 31. But it made me mad that my mother died from breast cancer at age 33, and she believed in the whole "diet" thing. And she lived 2 months SHORTER than what they thought she had. Doctors don't like to guess too short. In my mind, I blamed in on that STUPID diet she was doing. All vegetables and fruit and only certain meat. What a CROCK!!! I am definetly on the other side of the whole "diet" debate. People always make the comment:

"How come that 90 year old man can smoke a pack of cigarettes since he was 12, and drink a 6 pack of beer every day, and not get cancer?" My Answer: Good Genetics!

Why are people so willing to think that diet caused their cancer, or will make it disappear? Why would children be getting cancer then? I have rambled enough about that.... the whole diet debate, just burns me because it failed me, my mother, my brother, my grandfather, and my daughter. It's GENETICS!!! Genetics/DNA can fail later in life just as they can be inherited. A simple HPV virus can CAUSE cervical cancer. How do we survive viruses? Our bodies LEARN how to overcome them, which normally means that a genetic change occurs. It's part of the wonderful adaptability of the human race, but to some of us - our demise. It's survival of the fittest "Genetics".

I have liver and bone mets. You would think that would be worse to have 2 areas right? Nope, the brain mets are not shrinking, and the one under her arm is growing - even on huge chemo treatments. I was talking to another friend who said they saw an ambulance go to her house this weekend. One month ago, they thought they were going to be able to shrink everything.

[deb-steph]

i have also been wondering about the survival rates of her2. i also want to know if being her2 is considered metastatic. everything i read is about herceptin treating metastatic breast cancer. i am a stage IIb her2 positive. i'm considered a primary cancer with no other health problems (diabetes, heart disease, etc) so i'm unclear how i stack up in all these numbers. i see my oncologist on the 21st and i have numerous questions, this being one of them. he told me at the time i started to see him that with surgery alone i had a 25 - 40% chance of the cancer returning but with surgery (lumpectomy), chemo, radiation and herception my chances went back down to 14 - 18% chance of recurrence.

[pattyz]

Julierene,
Bless your heart! I agree: 'it's in our genes'. Some outside factors may change our genetics without any fault of our own, yet......I believe there is really nothing we can do/EAT/NOT do/NOT eat, to change whether we get cancer or not.

About your friend who is triple neg... I know this offers fewer treatment options, with perhaps lower response rates overall... But, on the bcmets.org site there are triple negs with some good longevity. Just as an fyi...

I'm ER+ PR- Her2+++ with mediastinal nodal mets (now NED) and brain mets, (currently for third time with multiple) This was what I wanted to tell you really.

If you have not seen my posts: I HAVE responded to Xeloda/Temodar for these 8 current brain mets. Twice (after 2 rounds ea.) they shrunk nearly 50%. Three more MRis showed stable, no new lesions. I started this tx a year ago. I do have some small progression to two of the 8 lesions, and am back on my chemo. Perhaps you could share my story with your friend, too.

There have also been at least two small studies using this combo for breast cancer mets to brain with similar success. One was just posted by Lani in the Trials area here. The other was reported at San Antonio in '04.

Best to you, girlfriend,
Gonna go have something yummy now...
pattyz

[tousled1]

I was told that with only surgery and chemo my chance of recurrence was 45-50%. Adding Herceptin to the mix brings it down, but then throw in the radiation on top of it all and my chance of recurrence drops to between 10-15%. It's sort of like rolling the dice or spinning the wheel - no one knows for sure if you will have a recurrence, but you do everything you possibly can to prevent a recurrence.

[dawn]

Reading your posts always brings me up a little. Im hoping with the surgery, chemo, rads, tamoxifen, Herceptin. Everything that I've done and am doing I will kick this thing out of the ball park. I haven't had the courage to ask my oncs what they think of my prognosis, but I think Im at that point where I need to know what lies ahead and what they think. At first when I was diagnosed they weren't very optomistic and my last couple of appointments since all my results came back they are very optomistic , smiling and happy when I walk into the office. So there must be something good happening. I know we shouldnt lean on stats but someitimes you need something positive to help you out.

[MJo]

Deb-Steph. The definition of metastasis is "the spread of cancer from one part of the body to another." Not all Her2+ people have cancer that has spread beyond their primary tumor. I had a small (1/2 centimeter) breast tumor with no cancer in my lymph nodes. However Her2 is known to be an aggressive cancer and even a tiny tumor has millions of cells. One of those cells could have escaped. Even if it did, my immune system could have destroyed it, but I decided not to take a chance and had chemo. Again, the answer is no. Just because you have a HER2 tumor doesn't mean you automatically have cancer in another part of your body.

In ten years I am convinced there will be tests sensitive enough to design treatment for each patient's Her2 cancer. I think a number of us will be able to avoid chemo. I was just born too soon!!

[tousled1]

MJo,

Am I correct in reading your response that if your cancer has spread to your lymp nodes then it is considered that you have metastic breast cancer??

I had 14 of 26 lymph nodes positive for cancer, but my oncologist just calls it locally advanced cancer.

[Sherryg683]

No, cancer that has spread to your lymph nodes is not considered metistatic. It's when it spreads to other organs, such as lungs liver bones that it is stage IV. Your number of lymph node involvement puts you in the stage IIIC category...sherryg683