24 years later

Posted by gloriaannjames @gloriaannjames, Dec 31, 2023

In January of 2000, I was diagnosed with inflammatory breast cancer. I've had five recurrences, the most recent, a recurrence in my liver this past September. Treatment is tolerable and seems to be working. Twenty-four years ago, I was not expected to live past five years. I am grateful.

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@lisakinpa

That’s amazing and so good to hear that you’re a 20 year Her2+ survivor.

Did you receive any immunotherapy at the time? I’m five years out and doing well. ♥️

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20 years ago, not even herceptin was approved for frontline therapy. I did get it with the first return and they were watching for it of course. It was only a year or so later I think it was approved for frontline, the heart damage risk held it up. I think eventually the risk of her2 was greater than than the heart damage risk. I read all the time about a new tool in the box to treat her2, and I think “well they are really getting a handle on this one”.
There have certainly been some drawbacks to getting cancer young, but I am so grateful for all the time I have been given with my family. I still mostly do the things I love, and now I am the primary caregiver for my husband. I am happy to hear you are 5 years and doing well❣️. There was a time when that would have been the exception with this cancer.
I guess this is why I still always have hope in my heart for other aggressive types of BC. I also believe resilience is one of things we can do to improve our quality of life no matter what the prognosis.

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@sirene

What was your original stage and diagnosis? Invasive Ductal Carcinoma?

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Stage 1a. Both IDC and DCIS. Margins were clear yet close. 20 rounds of Radiation.
Nerve damage, lymphedema, chronic pain and thick scar tissue and fibrosis that extends quite far into my lat and toward the back area. It's been 3 years. Very very tender still.

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@tracyanne

I have an enormous amount of thick internal scar tissue from my lumpectomy. I worry about cancer in that tissue. I have only heard "post surgical changes" on scans. Can you please tell me which test confirmed the cancer in the scar tissue? Thank-you.

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I found the lump, had ultrasound of scar line. Took three attempts to remove "all the lump". Mind you, my scar line was from the right side mastectomy back in 2021.
Back in '98, had lumpectomy of the right breast, always had a definite scar lump that always got them excited when doing FU mammos.

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