Looking for Her2 Positive survivor stories

You were truly blessed.

I had a zoom visit with my oncologist yesterday. He has put me on a schedule of yearly visits already. We discussed my frustration with nerve damage in my feet, and should'a would'a could'a. He said that hormone negative breast cancer is very responsive to Taxol. But I had an episode of immune compromise, and one infusion was delayed by almost a week. At that point the Taxol could have been reduced and I wouldn't be dealing with as much nerve damage. He is comfortable with saying that because he is not the oncologist who brought me through the roughest part.

Rachael - worry, I'm ER/PR negative. But I did confirm with my new oncologist last month that it's likely after FIVE years and all the treatment that I went through, that I won't have a recurrence of the 'same' cancer. Not to say that I can't have a new breast - but that sure made me feel good. Maybe not really justified, but...

The way my oncologist was talking, they have access to tables giving all that data. I have the same chances of getting breast cancer as any woman who has not had breast cancer. The only thing at that point that would reduce my chances of again being diagnosed with breast cancer would be to have lefty amputated. And my plastic surgeon probably has a story for the ages about a woman who asked, hypothetically speaking, if she were to have a grandchild who was in desperate need of her breast milk, would it be possible to re-lactate on that breast. (Answer, hypothetically, was yes.)

1982M—that sounds a bit of overkill to me too plus I am in no hurry to take any more chemo or monoclonal antibodies. This whole year has been tough. I have another complication in that I need to have a knee replacement and I am hoping that can happen by February or March I do not want to be on either AI drugs or Tamoxifen and run the added risk of DVT. Or feel awful on these drugs while going through rehab. Or have more joint pain or ?

I will be 6 months out from last treatment by then and will need to be cleared to proceed with surgery. I am taking the risk of not starting these endocrine drugs but want to end this knee pain issue which at this point is keeping me from moving forward with exercise or anything else. What a dilemma. Deep down I still think these endocrine drugs do such horrible things to the body. I wish there was a true risk recurrence calculator for HER2

Thank you, that is an encouraging article from 2019. I am hoping the experts start to look at this kind of data instead of giving these endocrine drugs out as protocol to everyone that has node negative, early stage disease. I see my NP today and will ask again about any recent calculators as well. As I predict, they will not really have any answers besides telling women to go on AI drugs or Tamoxifen.

raleighgirl, congrats on your 7 years and your new baby! Thanks for sharing with us

Raleighgirl, you give me hope. And others hope. Thank you for coming back on line to post. I had early stage but also the Grade 3, Her2+. It is hard to not think about this every day. I did everything in my plan this past year but not the AI drugs, yet.

You give hope that 7-10 years is possible for Her2+ women.

Yup - it's possible. Like Raleigh, I'm 7 years out from a recurrence that was HER2+. My blood work in August was good & I just had my every-other-year ultrasound. No evidence of disease.

MinusTwo congrats for 7 years and I wish many more healthy years to come.

Good health to all of us ladies

Margun,

I do think it's possible to now die of old age instead of the disease. I had a PCR after chemotherapy and had over ten tumors spanning 10cm. It was massive! Also had lymph node involvement. When I was diagnosed my oncologist told me that despite my staging and tumor size she thought I would be cured. I have chosen to believe her. Thinking otherwise takes away from my everyday joy. Sending positive thoughts and healing!!

I love hearing these 7+ year numbers! I was diagnosed triple positive in 2019. I believe have made great strides in bc treatment and that we will see bc patients dying of old age. I hope we make more majorly breakthroughs in treating our stage 4 brothers and sisters soon. My cousins just marked 10 years with stage 4 bc and is living life. I think it is so important that we hear of people doing well years and years after diagnosis

Margun - I'd go ahead & call your doc.

Raleighgirl- my red but also white cell count are slightly bellow normal. The white once were bothering me more because after the surgery they were in the normal range. However, I am also taking Letrozole which generated osteoporosis. It is possible that the Letrozole is doing this because apparently it is one of rare side effects of this drug.

Hopefully, first, we stay cancer free and, second our body resist to all drugs necessary to fight the damn disease. Wishing beautiful and healthy days to all.

Same for mine. I am actually on a six-month schedule for seeing MO. I can talk statistics, so chances of re-occurrence are way off into the good tail of the distribution.

You didn't get Herceptin?

"At this time, there's been no specific research on survival rates for HER2-positive breast cancer alone. Current studies on breast cancer survival rates apply to all types." https://www.healthline.com/health/breast-cancer/he... So the tables were not specific to HER2+.

"According to the National Cancer InstituteTrusted Source, these are the 5-year relative survival rates for women who received a breast cancer diagnosis between 2010 and 2016:

• Localized: 98.9 percent
• Regional: 85.7 percent
• Distant (or metastatic): 28.1 percent
• All stages combined: 90 percent

It's important to remember that these are overall statistics. They can't determine your personal outcome."