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Topic: HER2 Positive-anyone 10 years out?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Sep 12, 2009 05:32PM, edited Sep 12, 2009 05:34PM by tuckertwo

tuckertwo wrote:

Hi ladies,

I was wondering if there are any women out there who are 10 years or longer with her2 positive breast cancer?  When I was diagnosed in 2008, my prognosis said '80% chance of no recurrence in 10 years'.  Wondered what they based this on, as I have yet to talk to anyone past 6-8 years and they seem to have had recurrences because they weren't on Herceptin.

 I would like SOME hope that this thing can be beat.....and would love to hear from anyone who has been dealing with this thing for 10 years and are still alive and kicking.


I have not put my dx in profile yet so will type it in here:

Dx: Aug 2008 50% IDC, 50% DCIS right breast only, 2.1 cm, grade 3, HER2 positive+++, ER weakly positive, PR negative, double mastectomy Sept. 2008, began TCH November 08, finish Herceptin Oct. 2009. One year NED!  

"I tell you the truth, if you have faith as small as a mustard seed...nothing will be impossible for you'. Matthew 17:20 Dx 8/27/2008, IDC, 2cm, Stage II, Grade 3, 0/8 nodes, ER-/PR-, HER2+
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Jun 6, 2010 08:38PM josefina wrote:

Hi Ladies

I have not been in any of the breast cancer boards for several years but just wanted to say that I was Her2 positive and they only tested me because they were going to include me in a trial (which I did not accept in the end as I didn't want to be going back and forward to hospital and then the chance of getting a placebo..) my cancer was diagnosed at age 43 seven years ago. It was 1.9cm and grade three. No nodes affected. I had two failed lumpectomies, two mastectomies with reconstruction (one of my own choice!) and chemo to which I reacted really badly so I only did four sessions. Then Tamoxifen for 4.5 years. I kept off all dairy and had a really good diet with lots of juices and changed my cosmetics etc to non chemical versions. I never even lost my hair during chemo as I was doing the Jane Plant juices.

I would like to say the following:

Until recently I lived in total agonising fear the cancer would come back. Now I am starting to relax..but the thought of it coming back was crippling me. Also being in the cancer boards constantly did help me to start with but then it was really making me worse because I would take others recurrances etc as they would have been my own.

I am now totally healthy, cancer free. No recurrances. Running 10K regularly since two months ago. YES, IT CAN BE DONE! CANCER DOES NOT ALWAYS COME BACK. BUT THE FEAR THAT IT MIGHT WILL STOP YOU FROM LIVING TO THE FULL...IF YOU LET IT.

Of several women I was in hospital with NONE of them have had recurrances! Not even two of them with affected nodes. They are all still alive and well. My aunty who had BC 23 years ago is also alive and well. Of course HER2 was not tested then but she might have been postive for all we know. I was told the chances of my being HER2 positve were very minimal because I was strongly (10-10+) for both progesterone and Oestrogen. So I was suprised and so upset to find out I was strongly HER2 positive.

I would say live your lives to the full. Have a good diet (yes I fell off the wagon several times with the dairy and things but slowly coming back to being vigilant)...exercise but not to excess, do not use too many chemical things in your house and your personal cosmetic and health care products.

 And don't worry about there not being many long term survivors here of HER2 or whatever because they are too busy getting on with their lives. Trust me ..they are there..like me!

I hope this gives you hope. Good luck!

All my love


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Jun 7, 2010 02:07AM 73gr wrote:

My mother was diagnosed back on 1991, when the cancer came back in 2005, we have done the test on biopsy tissues of 14 years ago and the results were HER2+.

My mother passed away on June 2011 from complications from brain and lung mets. Good bye and thank you for the fish! Dx 12/1/1991, Stage IV, 1/20 nodes, mets, ER-/PR-, HER2+
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Jun 7, 2010 08:20AM Beach wrote:


Thanks for coming back to tell your story!!!  It really hit home for me, as my chemo was stopped abruptly last June due to a bad reaction to Taxoterrible.  My last Herceptin tx was in early May of this year.  Over the last year, I have been struggling with this same recurrance fear; and since January of this year, fell into a major depression and anxiety, which became all-consuming, paralyzing and extremely frightening.  Just in the last week or so, I started to feel this sense of calm come over me and began listening to my inner voice, (of course with the help of professionals), gently pushing me forward.  I'm starting to see the light, albeit a little dim, BUT it's finally there....Thank you for sharing and helping me to believe that this too shall pass!! 

Gentle hugs to you and all who have been unwillingly chosen to make this journey.

((( ))) Sandy 

Beach Dx 2/5/2009, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jun 7, 2010 06:53PM josefina wrote:

Hi Sandy

thanks ever so much for your lovely reply. Yes I can recognise so much the fear you are talking about....sounds just like I was. I still have days when I catch myself thinking 'what if...' but they are getting less and less. I think now to the last seven years of fear and think 'what a waste!' Just concentrate on making your diet and life as healthy as you can....looks like the sunshine is finally coming out for you also! All the best..lots of love

Josie xx

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Jun 7, 2010 06:56PM josefina wrote:

Very sorry about your mum's recurrrance. Of course there are always going to be some people who will get a recurrance ..but I was just responding to the lady who wanted to see if anyone had survived past the few years with HER2 positive cancers. I don't think rates of breast cancer survival are really improving. Either that or I have been very lucky as have others that I met in hospital and none have had recurrances.

Wishing your mum and you all the best


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Jun 7, 2010 06:57PM josefina wrote:


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Jun 7, 2010 07:04PM josefina wrote:

I am seven years + from diagnosed of grade 3, 1.9cm tumor plus DCIS+++ all over right breast. No nodes affected. Progesterone and Estrogen +++ positive. I did not have Herceptin. Didn't want to have to keep coming back and forward to hospital after all the trauma of chemo and lumpectomies. I had bilateral mastectomies with reconstruction. One prophilactic.

I am absolutely fine despite having no Herceptin. My fear of recurrance is going. I have mostly followed a dairy free diet ...as little chemicals as possible in my cosmetics etc...

So yes...No Hercepting for me..only Tamoxifen after four sessions of chemo ..could not have any more due to huge side effects.

 All the best


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Jun 8, 2010 06:17PM chicagomom wrote:

Josefina - why no dairy?


Dx 9/10/2009, IDC, <1cm, Stage IIA, Grade 3, 2/15 nodes, ER-/PR-, HER2+
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Jun 9, 2010 08:02PM mmm5 wrote:

Josefina, Thanks so much, we have the same stats same size etc. I was dxed at 42!  My question is did do any other treatment for hormones after the 4 years Tamox.

Do you continue to have tumor markers checked, did you have any scares of recurrance with pains or blood work etc?

I am happy for you, that you seem to be moving forward. Congrats!

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jun 16, 2010 07:07PM Denny123 wrote:

Just got the results of my latest PET/CT scan and Herceptin every 3 weeks has kept me in remission now for 6 years!!


Dx 12/14/2002, IDC, 5cm, Stage IV, Grade 3, 4/40 nodes, mets, ER+/PR-, HER2+ Surgery 2/20/2003 Mastectomy: Left, Right; Lymph node removal: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 4/1/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/23/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant)
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Jun 16, 2010 09:26PM stlcardsfan wrote:

Denise -

That is great news!

thanks so much for posting. Here is hoping that Herceptin continues to do it's thing for you! 

TCH, Herceptin, BMX, Exchange all Done! Dx 12/16/2009, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jul 1, 2010 07:13AM deemarie wrote:

i am her 2 postive and now dr see 4 small nodes on my lung but she does not seem to  concern about it will do another pet  july  30th but i am so afriad she mention something to me about a pill about a chemo pill but only after she see the results of the scan,this has all happen within the last year i was cancer frree.I am on this journey alone no relative or friend, just want a little input from others

Dx 9/15/2008, Stage IV, mets, HER2+
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Jul 2, 2010 12:10PM Bold wrote:

Oh deemarie! I am so sorry that you have to face this alone. Life seems sometimes to be so unfair and hard. I have read so many good things about dealing with lung nodes. You have a long life ahead of you please do not focus only on the fear as it will rob you of the joy that is your life. I am sending you healing light and love.

started TCH x 6 Dec 29, 2008 Dx 11/6/2008, IDC, 3cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Jul 6, 2010 02:23PM BonoboGirrl wrote:

Thank you, Josie, and all the other survivors who have posted their stories--I'm needing them today. In fact, I have tears in my eyes as I type this. I just wrapped up my 6th round of TCH, am continuing every three weeks with Herceptin, but am suddenly stricken by extreme anxiety that comes with the fear of recurrence. I can't seem to shake it some days. I notice, Beach, that you've gone through a similar phase. Is there anything in particular that has helped you find calm amidst the storm? Though I know it's natural, I hate feeling like this, especially when I rationally know that recurrence and the number of years left ahead of me are not something within my direct control. Ugh. Sigh. The anxiety is infiltrating my dreams, too.

Well, all that to say, once again, thank you ladies for taking the time to stop by and encourage those of us who are just beginning our dance. Your stories help and give me hope.

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Jul 6, 2010 02:53PM Jaimieh wrote:

AnneMarie ((hugs))~ I think the fear was really bad after my last chemo and then around my 1st anniversary.  It will get better and I still have days of the anxiety feeling like it is taking over then I start rationalizing with myself.  I have to look at it as I have done everything that I can and now comes the crappy part because I have no control.  So now start your healing my dear from TC......we are all here for you.  ((hugs))

Dx 12/24/2008, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Dx 3/25/2014, IDC, Stage I, Grade 3, ER-/PR-, HER2+
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Jul 6, 2010 10:17PM CMT wrote:

deemaria My prayers and thoughts are with you. God bless

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Jul 10, 2010 09:49AM Beach wrote:


It has been extremely difficult for me because of the feeling of having no control over anything....I have always been a bit of a control freak and a perfectionist Embarassed, so things never just rolled off my back....I obsess about everything and these traits make the recovery process even that much more difficult.  When I fell into the black hole back in Feb, my oncology team, GP and family saw the look of hopelessness in my eyes, and quickly reacted by getting me in to see a psychiatrist who works specifically with cancer patients.  He "gets it" and has been a huge help getting me through the depression and anxiety.  I had to be put on an anti-depressant which is something I never would have agreed to pre-cancer, but realized that I couldn't will myself to feel better....I needed help.  I had gone back to work part-time back in Oct but was pulled back off by my GP in mid Feb in order to combat the fatigue and just focus on me.  This has helped too and I am currently still off work indefinitely. 

I am slowly getting past all this and the best advice I can offer you is to ask for help.  Your cancer centre should have these services available to you.  This does NOT make you weak by any means.  You are strong and have used all of your strength to fight through the dx and tx and it's probably been one big blur.  Now that this part is finished is when you step back and realize what actually has happened.  It takes time to process, accept, regain your strength and figure out your new normal in order to move forward.  Some people who have not been down this road will not understand what you're currently going through because in their mind tx is done so you should feel better.  This is why talking to a professional might help.  It's important to remember that the recovery process is different for everybody, so try not to allow the "I shoulds" to take over your mind and consume you with guilt.  You will get through this and you will start to feel better, but it's a process much like the grieving process and requires time.  There is no protocol for how long this takes; it will take as long as it needs to for you.  Be good to yourself and everyday try to do small little things that will put a smile on your face....remember, one step at a time.  These boards have helped me to realize that I'm not alone in this and neither are you; we're all here for you!!  Feel free to PM me if you want.  Sending gentle hugs your way!!!

((( ))) Sandy 

Beach Dx 2/5/2009, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jul 11, 2010 10:32PM BonoboGirrl wrote:

Thank you everyone for your hugs and encouragement.

Sandy, your post resonated strongly with me. In fact, so much so that I'm tearing up again. The anxiety has been unbearable, and I've never been one to be anxious; although, like you, I've always been in control and a perfectionist, so maybe there's a connection there. Being a single mother doesn't help the anxiety either. Funny how it hit hardest after my last intensive round, but I think this makes sense, since, as you mentioned, it's at the conclusion of treatment when we finally can step back and process what's happened. While I still have 3/4 of a year of Herceptin treatments to go, I had been bracing myself through the TCH treatments, and now that those are over, all I feel is loss, confusion, uncertainty and fear. Well, you obviously all understand. I'm getting my first Herceptin only treatment this Friday and will most certainly be discussing my anxiety with my oncologist, will ask him about counseling services and meds.  I've also never taken an anti-depressant, but at this point all I want is to feel better--strong enough to meet and engage each day fully, like I used to. 

Did the anti-depressant help?

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Jul 12, 2010 09:11AM Beach wrote:


Finding the right anti-depressant and dosage that works best for an individual can be challenging at first, but once you do, yes it will help with both the anxiety and depression.  Believe me I was apprehensive about going this route, but it has made a world of difference coupled with bi-weekly appts with my psych.  He told me that people with these personality traits - perfectionism, obsessiveness, need for control, etc. - generally have a tougher time with the recovery process because we always need a "plan" and we need to have control of this plan.  Cancer takes so much of the control away from us and puts us into this new type of tail spin of which we have no frame of reference to get out of....result is anxiety, sadness, fear, confusion, frustration and/or hopelessness.  This is probably why we feel so lost after active chemo tx because while it is not something WE would ever choose to do, it's a plan just the same.  Once tx is finished, it now becomes a "wait and see (and hope)"....this type of thinking does not fit into who we were and how we used to navigate through life.  Now we need to figure out how to adapt to this way of thinking in order to be able to move forward and this can be a difficult process!! 

I can only imagine how difficult it must be for you being a single mother on top of this.  All the more reason to see what services are available to you at your cancer centre.  BTW I felt exactly the same feelings you felt once chemo was done....it's difficult for our family and friends to understand this, but these feelings are common and we can help you through this here.  I will keep you in my thoughts and prayers, and please feel free to PM if you need.

((( ))) Sandy

Beach Dx 2/5/2009, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jul 14, 2010 06:59PM BonoboGirrl wrote:

Hey there, Sandy, once again your post resonates--completely. I'm glad to hear the anti-depressant is helping you and hope that I find the same kind of relief, for I certainly need something to help me make the transition. I'll let you know how my discussion regarding this topic goes with my onc this Friday and what he suggests. Also, you're totally right about being able to stay centered through tx because, though we may not ever choose it, it's a plan. Thanks again for sharing your experience and extending your support! Much appreciated and very helpful. 

 Hugs back to you...

(((    )))) Anne Marie 

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Jul 15, 2010 08:44AM Beach wrote:

AnneMarie, I'll be thinking of you on Friday and would love to hear the outcome if you choose to share.  Best to you!

((( ))) Sandy

Beach Dx 2/5/2009, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jul 15, 2010 02:29PM mmm5 wrote:

Hi Ladies

We have so much wonderful info on this thread and have had to move it once before, do you all mind if we start a new thread for us her2 gals dealing with the stress and anxiety of this type of disease I think we would all take so much from hearing all of your stories. I would like to return this thread to the original topic 10 YEARS OUT as I go hunting for it whenever I need reassurance.

I am happy to make a new thread for all of us if needed.

Thanks so much 

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jul 15, 2010 03:26PM cat60 wrote:

mmm5...that would be great to start a new thread for us Her2 gals ...

Cathy Dx 10/16/2009, IDC, 1cm, Stage II, Grade 2, 1/26 nodes, ER-/PR-, HER2+
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Jul 15, 2010 05:43PM mmm5 wrote:

Ok will do tonight = How about Her2 Ladies, stress, anxiety and questions??

Anyother suggestions 

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jul 16, 2010 08:25AM Beach wrote:

I must apologize....I hijacked this thread without even realizing it Embarassed.  Just trying to help out a sister, but a specific Her2 thread for this stuff would be a good and necessary idea so others don't feel as if they're on their own with this dark stuff.  I know there is a forum for this, but I feel more comfortable staying here because we've all been down the similar Her2 road. 

Thanks mmm5!!


Beach Dx 2/5/2009, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jul 16, 2010 09:46AM BonoboGirrl wrote:

I likewise didn't mean to steer the topic in a different direction. Looking for those 10 years out, for me, coincides with a desire for some reassurance that stems from my anxiety regarding recurrence, and in this way the topics are interrelated.  But I definitely support the creation of a separate topic! Makes sense. :)

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Jul 16, 2010 07:37PM TriciaK wrote:


Love your suggestion and wondered if you started this thread as I could'nt fine it??

 I also would love some reassurance on this, despite being fortunate to reach 5 years I want to reach ten lol!!!

Tricia xx

Tricia Dx 7/4/2005, IDC: Cribriform, Right, 2cm, Stage IIA, Grade 2, 3/9 nodes, ER+/PR+, HER2+ (FISH)
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Jul 18, 2010 01:46AM mmm5 wrote:

will start it tonight!

Topic will be

Her2 Anxiety,Questions, and Need support 

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jul 23, 2010 03:51PM Penny0607 wrote:

I was diagnosed with Stage IV BC/Her 2+ with bone mets in June 2005, right after Herceptin was approved for all to use. I was 43. My kids were 7 and 10 years old. I thought I wouldn't see them get to high school. I have been on Herceptin ever since, with pretty good results.

I won't lie -- I was diagnosed with a new met tumor in my hip in 2007, and the cancer has been progressing slowly in that area, even after radiation treatments. Most recently, I've been on Gemzar for half a year to control the disease in my hips. But I have no other tumors, and we are able to control the disease in my hips pretty well. Since I didn't react well to the Gemzar, and since Herceptin alone isn't working its orginal magic, I'm switching to Tykerb. I'd love to hear any experiences with that drug.

My onc says I can go back to Herceptin down the road, if we aren't satisifed with the results from Tykerb. Bottom line: Herceptin is wonderful. I feel great, have very little pain and am leading a very normal life 5 years after a devastating diagnosis. My family and I treat this as a chronic disease, not a death sentence.

We stage IV HER2+ folks are part of a new generation. Many of us will live 10+ years. My daughter will graduate high school in 2012. I plan to be there, and also when my son graduates in 2015. Keep the faith.

Dx 6/2005, DCIS, 3cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 23, 2010 11:47PM weety wrote:

Penny, Thanks for sharing your story with all of us.  I hope Tykerb works well for you!

Dx 7/17/2009, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2+ Surgery 4/19/2010 Prophylactic ovary removal Surgery 4/10/2013 Prophylactic mastectomy: Right Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)

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