So when do we get to breathe?

Paris · 10-26-2008, 08:19 PM

I am coming up on the second anniversary of my bc diagnosis. While I did not worry much the first year about recurrence I find myself thinking about it more. I'm doing my best to take care of myself and stay healthy but at what point do I not have to worry about cancer coming back? I was er/pr negative w/Her2 pos. From what I've read if this aggressive subtype is going to come back it comes back early then the risk drops off. But how many years is this- two, three? I start counting from when I finished herceptin which was January of this year. Is that correct or is it from diagnosis date?

Does anyone know what the latest research is on this?

harrie · 10-26-2008, 11:15 PM

Paris....I am right there with you....coming up on my 2 yr anniversary. My dates are very close to yours....
We are both enjoying days right now of being healthy and have rebounded well from our txs. These days are too precious to go without gratitude.
Sometimes I worry too. Any ache or pain out of the ordinary raises some "orange-alerts"....
I really can't answer your question. I jsut wanted to let you know that I was on the same time frame you were.
....high-five sister!...

Jean · 10-26-2008, 11:45 PM

Happy cancerversary to you dear Harrie! I wish you
2 x 2 x 2 x 2 x2 well you get my point!

Paris, as far as any study recently there was a discussion on this...but I just do not remember
the post. I will do some searching and try to find it.
But remember any information is prior to the new data that just is not out yet....since early stagers are being treated with herceptin...we will be the ones in the next few years to offer that data. I am of the thinking that
those treated early with herceptin will (God willing)
offer some exciting new results.

Enjoy your 2nd year and look forward to many many more!

Blessing to both of you!
Jean

Jean · 10-27-2008, 12:06 AM

http://www.reuters.com/article/healt...me=ushealth200

Joan posted this link in August.
But remember this was collected data prior to early stagers receiving herceptin.
So, therefore we are expected even better stats.

Paris · 10-27-2008, 06:29 AM

Thanks, Harrie and Jean. I guess I'm looking for that finish line where I can say I beat this thing and not have to worry about it anymore. I am doing my best to stay hopeful. I would assume that with herceptin and the a/i's that the study results would be more favorable if they had been able to be included in the study. It would appear that the more aggressive subtypes would come back earlier and I'm trying to remember if there were any threads on this. I'll have to try to look it up.

Mary Anne in TX · 10-27-2008, 07:08 AM

For me, I've decided that Her2 BC is a lot like being a parent (well, a grandparent parent, that is)...you have to be on your toes every single day, but you can still eat chocolate and enjoy life. I worry about "parenting" a lot more than I worry about bc anymore. I know I have to stay diligent with both. But so many on this board have taught me to have some fun along the way! It's taken me a while, but I'm getting so much better. I have come to realize that I can't determine the outcome on either. My
granddaughter will turn out as she will...I'll just give it my very best! And I'm trying to do the same with my health. I have 2 more herceptin treatments scheduled along with bone, chest and abdomen scans. When Christmas rolls around, I'll be starting a new "life". No every 3 weeks treatment! Yes, I'm scared, really scared, but, I think I'm more scared of the change than of stopping treatments. I've always done change so well, and now I want my life to be really boringly the same!!! Sounds terrific to me. So many times I've heard others say that it just takes time and determination to get back to life. It will be 3 years since diagnosis on Dec. 27 and I guess I'm getting tired of letting bc steal from me.
Anyway, no more rambling....
Best wishes to you and keep on believin..... ma

flynny · 10-27-2008, 07:10 AM

Hi Paris,

I finished taxol/herceptin (9/8) and then met with my onc on 9/29 to discuss tamoxifen and I asked her the same question. She said that if I were to have a reoccurrence it would be between 3-5 yrs given my situation (see below). Jean is correct saying that there isn't enough "data" out there yet. We all just need to pray that the chemo did its job and that it's not coming back!! No matter what though it will always be in the back of our minds, I don't think that can change given what we have been through.

nitewind · 10-27-2008, 07:43 AM

Hi Paris, You're asking the same question that I've been asking. I sure wish I had an answer. I celebrated two years last July (that's when I had my tumor removed). I finished my year of herceptin last December. Yes, I do worry, I keep waiting for the other shoe to drop. I received my herceptin even though I was early stage and had no nodes involved. I guess, like someone else said, we will be the ones to watch and see what happens. Hopefully, all good!
I try not to worry so much, I hear people say "you're finished with the treatment, what are you worried about?" They just don't understand the her2+ and truthfully, I'm tired of trying to explain. I'm just praying for a great outcome for all of us.
Hugs

LAURIE · 10-27-2008, 08:39 AM

well I have had more than one blessing with this pregnancy. It has kept my mind off a recurrence. somewhat, of course my biggest fear is a recurrence while I am preggers. I go for my 3 month onc check up today, so of course I am a little anxious, but excited to show off my baby bump there to everyone.

caya · 10-27-2008, 09:53 AM

I'm also in the 2nd year club - I was diagnosed in Oct. 06, had my MRM Dec. 06 - happy about reaching the so called critical "2 year out" mark - but being ER+ and PR+ as well, I agree with Mary Anne in Tx- I figure I will always be on my toes!!
Hopefully with Herceptin we early stagers had, the long term survival rates will be off the charts. Good luck to us all - from Stage 1 to IV.

all the best
caya

cath52 · 10-27-2008, 11:54 AM

I get to join this club also. Found my lump in Jan.06. Surgery, 4 treatments of a\c and then a year of hereceptin. Finished everything in July 07. Have had alot of wierd aches and pains and so far nothing to them. I've never found anything on survival rates because Hereceptin wasn't there for those like us before 06 so we are starting a new era. Like Caya said "good luck to us all"
Cath52

10-27-2008, 10:07 PM

Paris,
Usually you start from date of diagnosis. I'm about 4 and 1/2 years out. I think the longer out the less you think of recurrrance thought it's always tucked away in your memory.
I was diagnosed in March of "04... had a partial mastectomy and axillary node dissection. March and April... prim tumor 2.2 cm, 3 DCIS, 4/18 nodes pos. had A/C and Taxol., dose dense and 37 rads.\Treatment finished Nov. of '04. The following May of "05,was the wonderful news of the effectiveness of herceptin. And the question of whether it would be given to those of us " earler stagers" ( 1 and 2 ) . There was a discussion with me, my onc. and an expert at Dana Farber in Boston as to whether I would benefit from 1 year of Herceptin. The decision was left to me. At the time the thought was if you were beyond 6 moths out of treatment , then there was a big question as to it's effectiveness. I choose to go for it and I finished up in May of '06. I'm very happy with my decision.
My feeling is once you've beeen diagnosed, there is always that lingering question as to if and when it will ever come back. Of course they say the longer out, the better your chances to beat this beast.... but only time will tell. I try not to dwell on it too much because I feel fine and look good at the grand age of 68.... just turned.
I've decided that when I hit the 5 year mark, I'm going to have a grand bash with music and all. I hope you do too.
Love and luck,
Carol

SoCalGal · 10-27-2008, 10:23 PM

It's funny - I never worried following the end of my treatment. I just assumed I was cured and it was good that I lived that way for 6 1/2 years...I think you should breathe every day. Act as if. Keep your mind from messing with you! There is nothing to do about statistics because you have done all you could. If it was 99% that you were cured you would still worry about the 1% so try not to let your mind worry. Maybe look into some supplements for restoring your heart function? CoQ10? Balancing the Omega's - etc. Try not to worry and just live your life. Every day that you wake up you've crossed that finish line and won! Blessings...
Flori

Jean · 10-28-2008, 12:04 AM

My dear sisters,
I look at it this way....our cancer was surgical removed, then we were treated with chemo/herceptin...

Next we do everything we can to eat the best foods
(yes some days we slip up) gosh, we are only human, we
take our supplements........

I find a strange situation that I will share...in the first year...we are still reeling from the entire event.
The second year we are looking over our shoulder and counting, not every second but here and there, as nitewind stated, "waiting for the other shoe to drop"...
then as you move further along this strange new journey the 3rd year...you may think or say "Well I have passed another mile stone - I am more than half way to the 5 yr. mark...still the thought will come to the front of your mind and you wonder....

My little bit of advise is when your mind brings up the worry just remind yourself you are in the "new data pool" and that data has more going for it than not.
Think of it this way...if the herceptin trials were proving get results with Stage 4...well consider what the new data should bring forth.

Then we have Laurie...who gives us all a huge smile
with the fantastic news of her new life coming our way!
It just doesn't get any better girls.

We are all blessed and doing fine....do a dance, jump for joy and I say to myself each day...get up, move be busy, "It is hard to catch a moving target"....ha ha
but besides the humor (and that is vital) each day we become stronger ...having been dx. with bc teaches us a beautiful lesson....embrace and enjoy everything, every moment.

Take those breaths my sisters!
Hugs,
jean