Diagnosed 12/21/12 Bad Days, just got worse yesterday...

Lsl327

Hi, first of all thanks to anyone that responds. I read your post and feel inspired. So far, no surgery yet, I have 1cm IDC Grade 2 e+ p+ no difinitave lymph or vascualr invasion, and the kickers I got today HER2+ ! Freaks me out! I am 42 years old and feel fine. No symptoms. Oncologist says I am going to be fine, but this aggressive type of tumor is making me nervous. I was doing pretty well but I feel like they have told me all over again I have cancer. Any word of wisdom? How soon should I be having surgery? Thanks again!

Loral

I was diagnoised on 9/11/12, had a lumpectomy and sentinel node biopsy on 10/9. I'am currently taking Tamoxifen. It took me over 2 months to decide what treatment I wanted to have , as doctors suggested Chemo, and radiation. I do not have BRCA1 or BRCA2 gene mutations (good thing), but my Oncotype DX score was 34, which suggests Chemo. I'm praying that my Cancer doesn't return and because it is only ER+ I hope the Tamoxifen works. I wish you well in your decision making process, and we are all here for you. Continue reading on this site, it can be overwhelming, but there is alot of good information here.

Lsl327

Thanks Lorall for sharing. Such a weird time in ones life. Good luck with your treatment. Be a survivor and not a victim! That is the stance I am taking! XO!

PatinMN

Lsl327, there is a very active thread for triple positive women like you - you'll usually find it on the first page of "active topics". I'm her2 positive as well, and had some of those "why me" moments. But Herceptin makes a huge difference for us. Most oncologists will not give Herceptin alone, only with chemo. My oncologist recommended 12 weekly taxol treatments with the Herceptin, and I made it through with very few side effects and kept my hair using cold caps. Weekly taxol is a lot less harsh than some other chemo regimens, and if you're stage I it might be a possibility for you. You will find lots of help and good advice on these boards, whatever is next for you.

Lsl327

Patinmn, See that is why these boards are so helpful! Do you ever think your bc is a higher calling...well if you didn't before now you should think so now! If you can only help one person with your positive results then it may make it all worth it. You just did that for me! So encouraging to see a women who faced this head on and is winning! I am going to try these cold caps...they sound awesome. Good luck to you and my best thoughts are with you alway now! Thanks for the great info!

lago

I was officially diagnosed in July 2010 at age 49. My tumor total was 6.5cm (5.5cm IDC + 1cm DCIS). Also had a small amount of LCIS in the "good" breast. I too was diagnosed at triple positive. When I would do google searches I kept reading "worse prognosis" associated with HER2+ but that was old information They have specialized treatment now for HER2+ so we went from one of the worst diagnosis to one of the best.

I had to wait 6 week after my biopsy before I could get into surgery… and I did fine. I have had no nodes which is quite unusual for such a large aggressive HER2+ tumor. These things don't grow quite as fast as we think.

Some people actually have chemo first. I  had surgery first. Everybody's diagnosis is a little different so you really need to talk to your doctors about what you will be doing. Given the 1cm size you will be doing chemo & herceptin. It's not fun but not nearly as bad as I thought. Same with surgery. This is the scariest part… all the waiting and not knowing. Many of us have gone through this before and we are doing just fine. This July will be 3 years since my diagnosis. This coming August 3 years NED.

Come join the group over at the triple positive thread. The women over there are increadable and very knowledgeable: linky

Loubarratt

I'm 30 years old and was diagnosed with IDC,5mm & no lymph node involvement. I'm am struggling at the minute and can not stop googleing looking for survivor stories as these seem the only things that can bring me out of my dark mood. I got misdiagnosed by the radiologist who told me it was a benign lump and to keep it in for 6 months ! So so glad I listened to my gut and demanded it be taken out. My nurse told me that the chances of it coming back are 'highly unlikely' and this is what I'm holding on too xx

Alicethecat

Hello LS

About a year ago, I was in the same position as you - just diagnosed - and was terrified.

What got me through was reading posts from women who were a few months ahead.

I kept reading comments such as 'doable' and 'The best thing about the side-effects from the chemo is being alive'.

These helped enormously and got things in perspective.

You're in the worst phase at the moment. Once there is a treatment plan in place, you will feel better. Promise.

By the way, a mastectomy got all my cancer, which had not spread to the lymph nodes or blood - same as you.

I was cancer-free after the mastectomy and I'm cancer-free now. Who knows what worked - the mastectomy, chemo or rads?

But for today, I'm grateful to be alive and would have the treatment again in a heartbeat.

Best wishes and good luck to you!

Alice

Lsl327

Lago..thanks for your post! Awesome information. I really appreciate you sharing with me. Again I will say your BC serves as a inspiration to me. I hope it helps you to know that! Loubarratt hang in there...remember nothing in you has changed you are still the same person try to maintain your enthusiasm for life. We are all dealing with the most treatable cancer in world. Keep your chin up! Thanks again more welcome!

Racy

Lsl, just want to add: good luck with the cold caps. I wish I had used them as losing my hair and waiting for it to grow back was the worst part of this ordeal.



There is a cold caps thread here, if you haven't already found it.



Stay in touch as this site is an awesome source of information, support, understanding and friendship.

Moonknighte

I can understand your fear! On the day I found out I had cancer my father was dying in the ICU from stage four stomach cancer! My mother had her breast cancer come back on her and passed away in 2001 my aunt in 2009 my cousin who used to visit this board often died six months after my father from breast cancer. It is like living in a dream world when you find out but then you wake up and fight!!!