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-   -   what is the average time to recurrance (https://her2support.org/vbulletin/showthread.php?t=31253)

penelope 11-23-2007 10:46 AM

what is the average time to recurrance
 
for her2+ er/pr- cancers? Anyone know. I am 29 months out and just want to know when I can breathe again.

I have seen the answer on this board somewhere but can not find it now.

Grace 11-23-2007 10:56 AM

Dear Penelope,

Please breath. I believe with HER2, one can start feeling safe (everything is relative, of course) after two years. Sounds like you are now in the safe zone, so congratulations. If anyone knows differently, please don't rush to tell me. It's head in the sand time of year for me.

Sheila 11-23-2007 10:59 AM

Penelope
It seems to me when you are past 2 years the risk goes down...you still need to be vigilent but the risk is lower...I recurred 1 year 7 mos after diagnosis...

PinkGirl 11-23-2007 12:28 PM

my onc
 
My onc told me 18 months to 2 years.

hutchibk 11-23-2007 12:49 PM

I recurred 15 months after initial treatment. I would say breathe. It's hard to enjoy life trying to predict what date is stamped on the bottom of your foot... to keep it in perspective, I always told myself that I could step out my front door tomorrow and a meteor could fall on my head. Some things you just can't predict... some people with Her2 never recur, and many who do are surviving and thriving for indefinite numbers of years. Her2 is quickly becoming the most manageable DX in breast cancer even with recurrence. The trends are toward chronic and not deadly disease, and there is sooooooo much in the pipeline that looks promising. Does this help at all?

tousled1 11-23-2007 01:58 PM

Within the first 2 years is when HER2 breast cancer is most likely to occur. After the 2 year mark HER2 recurrence is on the same playing field as regular breast cancer. If I were you, I think I'd just relax but stay mindful of any symptoms. Best of luck to you. You're in my prayers.

CLTann 11-23-2007 07:21 PM

sometimes ago, I found an article with recurrence rate vs. time for bc patients. For most of them, the curve peaks around 18 months after initial diagnosis and treatment (removal of primary site by surgery). The reason was that microinvasions of stray cancer cells need that much time to become noticeable (with symptoms). Recently, I discussed this with my onc again on this very subject, he agreed with the info since the data appeared to match with his patients. However, for HER2 patients, the peak is 12 to 16 months since the cancer cells are more aggressive and faster acting. Therefore, the 2 year mark is a very significant roadmarker for people in this forum, since they have already passed the peak rate. Too bad that I couldn't locate the article but the info above are generally correct. Hope this helps.

juanita 11-23-2007 07:31 PM

My brain is elsewhere tonight cuz I was at a football game, but is this from the date of surgery or date of treatment or what? It's probably printed right there and I'm just missing it.

tricia keegan 11-23-2007 07:33 PM

Is that two years from actual diagnosis time??? I'm 28 months since diagnosis and worry about this too..

Becky 11-23-2007 07:47 PM

It is from the surgery date, even if you had chemo first.

juanita 11-23-2007 10:57 PM

Wow, I've made it! September 5 was 3 years from my surgery!

tricia keegan 11-24-2007 03:22 AM

Thanks Becky, and congrats juanita! My surgery was two years last July, so far so good!

KellyA 11-24-2007 05:10 AM

Congratulations to all of you for making this important milestone! I am only about 18 months out, and trying not to agonize over the time- just keeping very busy with work and the kids and trying to keep my mind off of it all. I am happy to say that the "fog" from treatment has finally lifted, and for the first time since dx, feeling like my old self (as much as that's possible!) again. Markers and scans in Dec., so I'm praying for the best!

Love, Kelly

pattyz 11-24-2007 07:08 AM

I was dx'd at 29 mos.

Mets to mediastinal nodes/spot on lung+pelvis, then brain two mos. later.

Her2+++ er+ pr-

However, was not tested for Her2 status at orig. dx, and DID NOT receive Herceptin until mets dx.

Since tx w/ Navelbine/Herceptin late in '02, my body has remained NED, though brain mets recurred twice to present.

Point: that's five yrs NED in body (as far as we can tell).

Around the one yr mark, I decided to 'breathe', refusing to continue to live in fear. What if I lived to be 90 with no recurrance, yet had messed up by living in fear the whole time????? That question to self got me out of the box.

pattyz

"There are lies, damned lies, and statistics." MT/SC

CLTann 11-24-2007 07:36 AM

The counting starts at the surgery of breast cancer removal. The DX date has no significance in this case since one can discover early or late, depending on the judgement of the person who makes judgement on any palpable lesion. Some BC was not found by conventional methods. On the other hand, surgery date is a definite mark where a known source of BC was removed. If there were stray cancer cells lodging somewhere, it will take time for the cancer cells to multiply and show symptoms. This process will take time: thus the time factor comes into play. For people doing various defense steps, such as hormone therapy (arimidex, for instance), fatty acids balance, curcumine, etc. the body keeps on killing new cancer cells (which occur to all people) as a normal defense mechanism. Of course, recent info on certain cancer cells which become invisible to body self mechanism is quite disturbing.

mke 11-24-2007 09:10 AM

Like Kelly, I guess I'm at the peak recurrence time, about 18 months post surgery. But I'm feeling fine, so what the heck. Next couple of months will bring lots of celebrations and those tests and scans. I'm going to enjoy the former and try not to think too much about the latter.

nitewind 11-24-2007 09:11 AM

Congratulations Juanita! So far, I'm 16 monthes out from my surgery, I'm looking forward to the day that I can breathe just a little easier.
hugs

michka 11-24-2007 09:35 AM

I am disappointed because I thought it was 2 years from chemo or surgery whatever was done first. This is 6 months difference in my case.
Since after chemo I still had a residual tumor and some positive nodes, I wonder why they did not operate right away. I lived 6 more dangerous months with these cancer cells. But they had told me it made no difference for survival whether they did one or the other first. It could just give me a chance to save my breast. And in fact, it didn't.
A neoadjuvant chemo is often recommended by the doctors and it is not only because they cannot operate because of the size of the tumor.
What advice should we give to our unfortunate newcomers?
Michka

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Alice 11-24-2007 10:35 AM

Hi Michka,
I also had neoadjuvant chemo and this delayed my surgery for about 8 months. I think that the time frame of waiting , at least in my case, was well worth the potential risks. Because of having chemo while there was still measurable tumor present, I was able to see just how effective my chemo regimen was. If the tumor is removed first, there is no way to assess the effectiveness of the chemo and you just have to have faith that it was the right one. I hope this makes you feel at least a little better. I too questioned for a long time if I had made the right decision, but now I am very glad I did.
Alice

Becky 11-24-2007 11:04 AM

One should not worry about these things. Patty said it best - why worry about survival if you do not live (as in live your life to the fullest).

Those of us who are beyond the 2 years were once at 6 months, 12 months.

To be a 25 year survivor, you must first survive the 1st year, 2nd year. We all have to put in our time, day by day. No shortcuts in a 24 hr day unfortunately. Do not think of it as time, think of it as a new day - everyday!


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