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 HER2-neu positive, young and terrified
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Ajayvh7

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HER2-neu positive, young and terrified - Wednesday, May 31, 2006 5:33 AM
I just received more of my pathology reports yesterday and am now terrified because of what I have researched.
I am 33 years old with stage II grade II invasive DCIS. I am ER-, PR+ and HER2-n + which means the cancer is aggressive. I had a exision biopsy on the 22nd and am scheduled for a lumpectomy and axillary lymph node disection on June 8th. The MRI showed no enlargement in the nodes, however my surgeon said she would be surprised if they are not involved. I am terrified of the road ahead. My surgeon said I will be in chemo for several months, then 6 weeks of radiation. I am reading all of these survival percentages and am terrified because of what they say the outlook for a 33 year old is.
Is there anyone out there with a similar pathology report who can shed some perspective?

Thank you
Ajayhuz
Tricia Keegan

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Re: HER2-neu positive, young and terrified - Wednesday, May 31, 2006 5:46 AM
Alicia my path report is somewhat worse than your's as I have idc and am triple positive but I saw your post and felt I had to reassure you a little.Her2 plus is an aggressive cancer but Herceptin has changed the whole future for women with this.The studies you're reading are out dated and pre herceptin.Everyone is different too so statistics are just that,nothing more so try not to take it to heart.I felt the same as you when I began to research but have calmed a lot about the whole thing now as you will in time.Knowledge is power as they say but I don't think you will do yourself any favours researching old info on her2 neu pos.There are a lot of ladies here in the same situation and you will learn more from them than anywhere else,as I did.It seems a long road for you now but this is do-able treatable,and curable so just remember that above all.If you have any queries or concerns on the chemo or herceptin feel free to e mail me any time and I'll be happy to help if I can.Afew of the her2 pos ladies e mail each other and have a little support group going and although we are almost through treatments we may be able to help with any concerns you may have.Sorry this is long winded but don't worry you can do this and you're stronger than you think you are.Hoping for good news on the rest of you're report.
Tricia


> >I just received more of my pathology reports yesterday and
> am now terrified because of what I have researched.
> I am 33 years old with stage II grade II invasive DCIS. I am
> ER-, PR+ and HER2-n + which means the cancer is aggressive.
> I had a exision biopsy on the 22nd and am scheduled for a
> lumpectomy and axillary lymph node disection on June 8th.
> The MRI showed no enlargement in the nodes, however my
> surgeon said she would be surprised if they are not
> involved. I am terrified of the road ahead. My surgeon said
> I will be in chemo for several months, then 6 weeks of
> radiation. I am reading all of these survival percentages
> and am terrified because of what they say the outlook for a
> 33 year old is.
> Is there anyone out there with a similar pathology report
> who can shed some perspective?
>
> Thank you
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
Maryann Lawlor

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Re: HER2-neu positive, young and terrified - Wednesday, May 31, 2006 5:53 AM
Dear Alicia,

First, take a deep breath. Second, read enough to stay informed but not so much that it makes you crazy. I did the same thing but only once because I was positive up until then and then started to sob because I was SURE I was going to be the worse case scenario! Every story is different and yours hasn't been written yet.

I am ER/PR+ but a very low percentage (which concerns my onco) and, although my first path report from the biopsy came back borderline for the HER2, the second from after the lumpectomy came back negative. The onco said that HER2+ just means that they know they need to treat you differently than HER2-. Ask all the "triple negs" on this site. You'll be amazed at how positive and uplifting they can be.

Ask your onco about the OncoType test. It hasn't been perfected yet, but it's one more piece of info you can use in making future decisions. Low numbers mean low chance of recurrence and may mean no chemo; high numbers mean higher chances of recurrence and probably chemo; mid numbers they're really not sure yet whether you'd need chemo. My luck? The number came straight down the middle!

I opted for chemo (still can't believe I did that!) because I don't want any regrets later. And to be honest, I just finished 3 out of 6 chemos and I'm feeling terrific! I shaved my head before my hair even started falling out because that would have been depressing! Takes me 10 minutes to get ready for work in the morning -- don't have to shave my legs either! Have to admit that the hair loss thing was the worse thought -- now I have a short wig and a long wig and I just decided to have fun with it! It won't be forever (as my ma says!).

Good luck in all your decisions. Make the right ones for you. Don't panic. Visit this site often -- these ladies are getting me through and keeping me very upbeat and positive -- something everyone says is very important to recovery and surviving (even when surviving means making it from one day to another, one decision to another).


> >I just received more of my pathology reports yesterday and
> am now terrified because of what I have researched.
> I am 33 years old with stage II grade II invasive DCIS. I am
> ER-, PR+ and HER2-n + which means the cancer is aggressive.
> I had a exision biopsy on the 22nd and am scheduled for a
> lumpectomy and axillary lymph node disection on June 8th.
> The MRI showed no enlargement in the nodes, however my
> surgeon said she would be surprised if they are not
> involved. I am terrified of the road ahead. My surgeon said
> I will be in chemo for several months, then 6 weeks of
> radiation. I am reading all of these survival percentages
> and am terrified because of what they say the outlook for a
> 33 year old is.
> Is there anyone out there with a similar pathology report
> who can shed some perspective?
>
> Thank you
ml
Age at diagnosis: 48
DX: 2/13/06; Lumpectomy: 2/22/06
Lobular; .7 cm; neg lymph; ER 1%+/PR 0%+/HER2 neu -
Chemo: FAC 6x; Rads 30x
Arimidex 1st; tried Femara; now on Tamoxifen
Rena

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Re: HER2-neu positive, young and terrified - Wednesday, May 31, 2006 7:26 AM
Dear Alicia,

My pathology was different from yours, and since it was such a long time ago, they didn't even have the HER test. But I was negative for hormones and even though my tumor wasn't especially large (between 1 and 2 cm), I had 22 positive lymph nodes. My doctor told me that my cancer was aggressive and I was treated with chemo and radiation. That was 20 years ago. I'm grateful that I didn't have the internet in 1986 or else I'd have done what you've been doing--scare myself by reading a lot of things that don't necessarily apply to me. The one thing we all have to remember is that statistics are only averages and we are individuals. And, as Tricia said, Herceptin has changed things a lot. Sending you a hug.

Rena


> >I just received more of my pathology reports yesterday and
> am now terrified because of what I have researched.
> I am 33 years old with stage II grade II invasive DCIS. I am
> ER-, PR+ and HER2-n + which means the cancer is aggressive.
> I had a exision biopsy on the 22nd and am scheduled for a
> lumpectomy and axillary lymph node disection on June 8th.
> The MRI showed no enlargement in the nodes, however my
> surgeon said she would be surprised if they are not
> involved. I am terrified of the road ahead. My surgeon said
> I will be in chemo for several months, then 6 weeks of
> radiation. I am reading all of these survival percentages
> and am terrified because of what they say the outlook for a
> 33 year old is.
> Is there anyone out there with a similar pathology report
> who can shed some perspective?
>
> Thank you
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!
Trish Turner

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Mirror Reports - Wednesday, May 31, 2006 8:54 AM
I think our path reports mirror each other! I have the same issues, I had a lumpectomy and node dissection in March. I have since been through three rounds of chemo and working on my fourth round tomorrow. I know this is very emotional for you, but remember that you can get through this. We are here for you!! I had the same fears, but as I started getting things behind me (lumpectomy node disection) and looking toward the future, I became more and more determined to beat this disease. Good Luck!


> >I just received more of my pathology reports yesterday and
> am now terrified because of what I have researched.
> I am 33 years old with stage II grade II invasive DCIS. I am
> ER-, PR+ and HER2-n + which means the cancer is aggressive.
> I had a exision biopsy on the 22nd and am scheduled for a
> lumpectomy and axillary lymph node disection on June 8th.
> The MRI showed no enlargement in the nodes, however my
> surgeon said she would be surprised if they are not
> involved. I am terrified of the road ahead. My surgeon said
> I will be in chemo for several months, then 6 weeks of
> radiation. I am reading all of these survival percentages
> and am terrified because of what they say the outlook for a
> 33 year old is.
> Is there anyone out there with a similar pathology report
> who can shed some perspective?
>
> Thank you
Trish Turner
Age - 28
Diagnosed - 02/24/2006 (27 Years Old)
Lumpectomy 03/15/2006
Sentinel Node Biopsy 03/15/2006
1/3 Nodes Positive
Axillary Dissection 03/28/2006 1/12 Nodes Positive
4 - A/C Treatments (begin 04/20/2006 - ended 06/08/2006)Complet
Karla W

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Re: HER2-neu positive, young and terrified - Wednesday, May 31, 2006 11:20 AM
I was 33 years old when I was dx in Feb--I just turned 34--I do not have the same statistics that you have er+/pr+ her2-, but please know that I will be keeping you in my thoughts and prayers--and sending ((((HUGS))) to you.
Take care
Karla W


> >I just received more of my pathology reports yesterday and
> am now terrified because of what I have researched.
> I am 33 years old with stage II grade II invasive DCIS. I am
> ER-, PR+ and HER2-n + which means the cancer is aggressive.
> I had a exision biopsy on the 22nd and am scheduled for a
> lumpectomy and axillary lymph node disection on June 8th.
> The MRI showed no enlargement in the nodes, however my
> surgeon said she would be surprised if they are not
> involved. I am terrified of the road ahead. My surgeon said
> I will be in chemo for several months, then 6 weeks of
> radiation. I am reading all of these survival percentages
> and am terrified because of what they say the outlook for a
> 33 year old is.
> Is there anyone out there with a similar pathology report
> who can shed some perspective?
>
> Thank you
KarlaW
California_Danielle

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Similar pathology - Wednesday, May 31, 2006 11:55 AM
Hey...

I was diagnosed at 31 a year and a half ago. My signature line will tell you the diagnosis. A mastectomy was STRONGLY recommended and alot of this was due to age. The survival rate with the initial surgery is the same regardless of whether you do a lumpectomy or a mastectomy, but the rate of reoccurance differs considerably. Have you had this discussion with your oncologist? The fact that we "hopefully" have some many years ahead of us forces the oncologists to be extremely aggressive. Don't worry so much about the Her2+ factor of your cancer. Herceptin exists for us and it has proven to be a miraculous breakthrough. Clinical trials were cancelled because it was so successful. I have one more treatment left of it and then I'll be completely done with all treatments (including the years worth of Herceptin)!

You're not a statistic so don't read too much into that. My oncologist has given me a 1-3% reoccurance rate so I just try to focus on that.
39 years old
SIMI VALLEY, CA (Los Angeles area)
DCIS diag. 10/04, left breast mastectomy 12/04
ER/PR –, Her 2+, clear sentinel node, except one or two BAD micromets.
Did 6 rounds FEC chemo to insure those were gone, then 12 mos. of Herceptin.
8-year SURVIVOR...approaching 9 years since diagnosis!
California_Danielle

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Similar pathology - Wednesday, May 31, 2006 11:55 AM
Hey...

I was diagnosed at 31 a year and a half ago. My signature line will tell you the diagnosis. A mastectomy was STRONGLY recommended and alot of this was due to age. The survival rate with the initial surgery is the same regardless of whether you do a lumpectomy or a mastectomy, but the rate of reoccurance differs considerably. Have you had this discussion with your oncologist? The fact that we "hopefully" have some many years ahead of us forces the oncologists to be extremely aggressive. Don't worry so much about the Her2+ factor of your cancer. Herceptin exists for us and it has proven to be a miraculous breakthrough. Clinical trials were cancelled because it was so successful. I have one more treatment left of it and then I'll be completely done with all treatments (including the years worth of Herceptin)!

You're not a statistic so don't read too much into that. My oncologist has given me a 1-3% reoccurance rate so I just try to focus on that.
39 years old
SIMI VALLEY, CA (Los Angeles area)
DCIS diag. 10/04, left breast mastectomy 12/04
ER/PR –, Her 2+, clear sentinel node, except one or two BAD micromets.
Did 6 rounds FEC chemo to insure those were gone, then 12 mos. of Herceptin.
8-year SURVIVOR...approaching 9 years since diagnosis!
Maria A

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Re: Mirror Reports - Wednesday, May 31, 2006 11:08 AM
You know, considering, you are pretty lucky. You are triple pos. I am only her pos. You have many treatment options. I only have the herceptin. Just think of those gals that are triple neg. It could always be worse!! Like the girls before me said. Take a deep breath, relax and look at your options. You will be ok. Praying for you!!
Maria


> >I think our path reports mirror each other! I have the same
> issues, I had a lumpectomy and node dissection in March. I
> have since been through three rounds of chemo and working on
> my fourth round tomorrow. I know this is very emotional for
> you, but remember that you can get through this. We are here
> for you!! I had the same fears, but as I started getting
> things behind me (lumpectomy node disection) and looking
> toward the future, I became more and more determined to beat
> this disease. Good Luck!
>
>
> > >I just received more of my pathology reports yesterday
> and
> > am now terrified because of what I have researched.
> > I am 33 years old with stage II grade II invasive DCIS. I
> am
> > ER-, PR+ and HER2-n + which means the cancer is
> aggressive.
> > I had a exision biopsy on the 22nd and am scheduled for a
> > lumpectomy and axillary lymph node disection on June 8th.
> > The MRI showed no enlargement in the nodes, however my
> > surgeon said she would be surprised if they are not
> > involved. I am terrified of the road ahead. My surgeon
> said
> > I will be in chemo for several months, then 6 weeks of
> > radiation. I am reading all of these survival percentages
> > and am terrified because of what they say the outlook for
> a
> > 33 year old is.
> > Is there anyone out there with a similar pathology report
> > who can shed some perspective?
> >
> > Thank you
Maria A.
Ajayvh7

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Re: Similar pathology - Wednesday, May 31, 2006 12:44 PM
Thank you everyone for responding. Your comments are a tremendous help.
Danielle, I actually haven't met with an oncologist yet, just my surgeon and she said based on all of the information and the size of my breast, I could elect to do either a lumpectomy or mastectomy. I have struggled with the decision because I know the rate of reoccurance. I am told that my treatments will be more aggressive and will include radiation. Perhaps I need to revisit and gain another opinion before next Thursday.
Thank you for your insight.

> >Hey...
>
> I was diagnosed at 31 a year and a half ago. My signature
> line will tell you the diagnosis. A mastectomy was STRONGLY
> recommended and alot of this was due to age. The survival
> rate with the initial surgery is the same regardless of
> whether you do a lumpectomy or a mastectomy, but the rate of
> reoccurance differs considerably. Have you had this
> discussion with your oncologist? The fact that we
> "hopefully" have some many years ahead of us forces the
> oncologists to be extremely aggressive. Don't worry so much
> about the Her2+ factor of your cancer. Herceptin exists for
> us and it has proven to be a miraculous breakthrough.
> Clinical trials were cancelled because it was so successful.
> I have one more treatment left of it and then I'll be
> completely done with all treatments (including the years
> worth of Herceptin)!
>
> You're not a statistic so don't read too much into that. My
> oncologist has given me a 1-3% reoccurance rate so I just
> try to focus on that.
Ajayhuz
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