HER2 Positive-anyone 10 years out?

Was having one of those mornings --

Anyway, made a last minute decision to get a pedicure at my local beauty school.  Had my LE sleeve on and a student (prob about age 42-45) stopped and asked if I was a BC survivor. 

She then told me she just had her 10 year cancerversary, Stage 3 Her 2 Positive.  She was on the clinical trial for Herceptin. 

She said she kept waiting to go back to school because she thought she might die.  But once 10 years hit, she decided it was time to go back!   SHE SURE MADE MY DAY!!!!   Now I hope I am making yours! 

Denise-g,

That's great to hear because I was in a clinical trial as well..Thanks for posting

Awesome

Oh my!!! How nice to hear it.  If you see her again, please send her our thanks for participating in the trial.  Her assistance is making a world of difference for us Stage III Her2 positive folks. 

LisaH,

What a wounderful thing to hear thank you so much for posting...

LisaH (and all)

I didn't have trastuzumab either, and here I am too, diagnosed the previous year. (My chemo was CAF x 6 and I refused blood boosters.) I did 1 3/4 years of tamoxifen.

AlaskaAngel

siisis,

Looking at your 2008 diagnosis certainly doesn't reveal any high risk likelihood. And you completed one therapy commonly used for it, as well as prophylaxtic surgery and are almost done with the recommended 5 years of an AI.

You have done more than most early stage patients do, especially considering that the tumor analysis was grade 2 and nodes were negative. But your fear is understandable. HER2 (for any of us) can involve brain metastasis.

My knowledge is limited, and in particular I am not knowledgeable about double vision or the various causes for it.

I have shared some knowledge here about research done that indicates that the degree of breast density that a patient has could be meainingful for those who are taking tamoxifen, in terms of measuring the effect of tamoxifen that could then allow patients to stop taking that drug at the point where the density diminishes significantly. At this point that research does not discuss any application to the use of any aromatase inhibitor.

I wish I could be more helpful, especially in your situation where you are dealing with an unexpected, sudden, and very frightening new physical change like double vision. At one point I had an MRI because I of significant vertigo and because of the risk of brain mets for any of us, and I haven't forgotten what it was like to wait for the news. Although as HER2's we ARE at risk for brain mets, we also need to remember as humans that whatever is causing the problem could also be due to something entirely unrelated to our breast cancer for which other treatments may be available. In any case, I too hope your exam will provide answers that will help you to deal with such difficult circumstances.

AlaskaAngel

siisis,

We are kindred spirits, I think.

Of course, there is no one "right"way to respond to sudden indefinite and threatening information and we each choose our own way to deal with it. In this instance, your reaction is very much like my own. When I was initially diagnosed I received the news over the phone just as my husband and I were leaving for a long-anticipated trip to the Grand Canyon. I felt at the time that I needed to learn more to understand and make choices for myself, and I didn't want to spoil a trip for him that both of us had been looking forward to for so long. So I didn't mention anything to him about it for a number of days, until it felt "right" to tell him. Along the way we stopped in bookstores and I bought what little was available then, primarily Dr. Susan Love's Breast Book. I hadn't even told my sister. There is a sense of dignity and personal control in that decision, even if we don't have full knowledge yet about the situation.

With you in spirit,

AlaskaAngel

Congrats to everyone on their recent cancerversaries! I will be 10 years out from DX on 10/20/13. It's humbling to even think of this and I don't think I've fully grasped it yet. I tend to be relatively private about my cancer history so it means so much to be able to share this here with all my sisters. I'm happy to see quite a few familiar names here, such as lago and Aussie Sharon.

I remember how I struggled through chemo and all the other personal challenges I had to face during cancer treatment and recovery. It's so true that what doesn't kill you makes you stronger...eventually.

If you are just beginning the journey, take care of yourself, ask questions and seek answers. I think I'm alive today because of research I did based on some leads from other ladies in my support group (who also asked tons of questions and advocated for themselves)...which led me to obtain Herceptin treatment prior to FDA approval, 10 months before the trials were completed. Don't listen to the naysayers who may want you to tend to their needs rather than your own need to survive. Get second and third opinions if you feel you need to, if you can. I was fortunate to have excellent insurance when I went through this but with my current insurance I'm not sure I would have been able to access the care I needed.

The boards have been an invaluable source of information and support. No one else knows what we go through unless they have experienced it themselves. So thank you to everyone and wishing strength and courage to all of us!

+++. 12 years out. Enjoying life.

Thanks everyone for your inspirational stories...you give us all hope!

9 years on Dec 2 2013!!

Hope springs eternal

Yea Soccermom! Congrats......love hearing it!

You can definitely do it! All the best to you- stay strong!

AlaskaAngel and all!  What wonderful stories! AA your stats are very similar to mine.  

Keep the faith ladies!