Looking for Her2 Positive survivor stories

I'm back!

I recall a post around the time I was diagnosed wherein a person asked why there were no long term survivors in this forum and a wise person answered that it was because they were off living their lives. A few did respond and seeing those survivors gave me great hope for my own survival. I decided then to come back every year that I can and let y'all know that I'm still alive and kicking! It's now been *10* years, here's to (hopefully) many more!

Hang in there, everyone.

Oh yes, thank you for the encouraging post.

6 yrs out from all treatment except tamoxifin.

Thankyou for all the posts

I am embarrassed to report, because mine was just barely clinical. But 2 1/2 years post surgery. Rarely think about it anymore. I thought consciousness of the numbness in my breast would last forever. Even the numbness of my feet doesn't bother me any more.

16 yrs out from a stage IIIc her2 pos bc alive , well and grateful everyday !

IKC and all of you ladies who are coming back to give hope.

IKC. I think you are the front runner on this site that made so long cancer free and going strong. I hope you and all of us live many many years healthy. Because of you I believe that I have a chance t see my kid graduate, get married and my grand kids.

Hello Melbo. I was hormone negative and strongly HER2 positive too . I also had a couple of scares during in the years following treatment and I still think of cancer when my bones or joints ache but I think of it less than I used to and luckily, most side effects of the treatment resolved in a couple of years. You have all the reasons to be optimistic. If you don't see many posts from HER2 hormone negatives it's just because they represent only 5% of breast cancers. All the best in your recovery.

10 years post diagnosis, but 6 months short of ten years for what I consider the official date when they finally found the tumor on my third biopsy and temoved it with clean, but close margins. Had a bilateral mastectomy the month after that and there was no change.

So while one shoe dropped, I am holding on to the other one for dear life! I still think about it every time the least little pain crops up, but I am out there living life and making as many memories with everyone as I can.

It was just 13 years for me last month!

• Racheldog, I did not have chemo or herceptin. When they did my lumpectomy they did not find anymore cancer, only some slerosing adenosis which is benign. They sent it out for a second opinion to be sure. Since my cancer was so small and basically removed in the biopsy, chemo and herceptin was not recommended at that time. Maybe nowadays it would. I had radiation and was on letrozole for 5 years. The letrozole was not bad for me. I had a mammogram scare last year but it turned out to be nothing. I still worry that it will come back one day. As I get older, (I'm now 65) every ache or pain I think is cancer. I think it always stay with you, but I do feel blessed to have remained NED for 13 years.

So many others here with great long term stories. It does make one wonder though that in the past there were much "lesser" treatments and the outcomes were still very good. Another breast cancer HER2+ friend and I had this very conversation tonight. Seems now that everything is thrown at very small or early stage tumors. Of course, that is putting women through a lot of drugs, side effects, discomfort and uprooting of one's life. Does make you wonder if more or less is better.

But I am glad to hear on this forum so many very positive long term no recurrences. Gives us gals starting out a lot of hope. How great that you all came back to post. Now dealing with the "looking over one's shoulder" is going to be a challenge !

Racheldog — it’s an interesting question about less treatment, and there are already studies looking into it. The RESPECT trial found that there wasn’t a ton of difference in overall survival for women 70-80 if treated with just herceptin and not chemo + herceptin. I expect more older women with other health issues might go that route more often in the future. But there will also be a small cadre of women who wonder if they are being discriminated against and not being offered the “best” treatment because of their age. *shrug*

https://www.breastcancer.org/research-news/can-older-women-w-early-her2-pos-bc-skip-chemo

I expect that as more studies are done more women in younger age groups might choose the herceptin only choice if it is given to them. However, it will end up being a tough decision and I’m sure many doctors will push the chemo option because they know it works very well and the stakes are life and death. Plus, while chemo certainly does suck, it’s not nearly as bad as most people imagine it will be. (At least not most of the breast cancer chemo.)

Even with all of the statistics in my favor based on the type of cancer I had and my PCR to chemo, I will likely visit these boards regularly for years just to keep an eye on new studies andbreakthroughs just in case I find myself back in cancer land.

Twelve years out in June as I count my surgery date and not my diagnosis date. You know, all that is behind me now and I just don't think about a recurrence but then I'm 75 now and think that helps. Threw everything at it, although behing HER2 positive that's just what you do. Even before I know I had to do everything, I thought that I would because if I had a recurrence I wouldn't have been able to forget and blame myself for not doing it all. I'm glad I did.

That has to be tough. MC your treatment profile says the tumour was over 6 cm, so maybe you made the right decision. Of course, no one ever knows for sure, but with a hormone negative, I accepted chemo as my only chance for systemic treatment. I hope that the side effects you are suffering will improve with time. Thank you for coming back to post.