Best treatment for small HER-2–positive, node-negative-unknown
Comments
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I don't have the same diagnosis but HER2 kind of 'wigs' me out. That said, I had to do chemo because of other factors too. I would want to be safe - there's not a lot of long term data so I would rather be on the safe side.
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You know, I fall into the gray area where I didn't get herceptin. "Findings" such as they scare the life out of me sometimes. They really don't know what to do with those of us that were "too early". Is there really such a thing as being too early? What do you do................what until it's too big????
Good grief!
At the time of my diagnosis, herceptin was given to stages II-IV. I promise you, three months later, it was dropped to stage I, but had to be at least 1 cm. Since I had a mastectomy, clear nodes, clear margins, tiny tiny TUMORS, no chemo....no rads...no herceptin.
Does anyone know of anyone like myself that was her2+++, and did not receive herceptin and is still doing well? I am, but am still on Femara. I have just turned the corner, and am now four years out. -
Jennifer,
I do not know if this will help you but I have a story to tell. I was diagnosed with DCIS w/microinvasion HER2+ and ER+ in August 2009. I had a lumectomy, nodes were clear, tumor was under 1centimeter invasion was microscopic and had not gone out of duct. I began chemo treatment w/herceptin and neulasta end of November 2009. After 1st chemo I got a rash on my arms and face. It was shrugged off by the nurse practioner. After 2nd of same treatment my whole body was a mess with huge wheals (hives). During treatment my breathing became very labored and a doctor was called in to check me. He said to continue so they did. I suffered with hives and was forced into an emotional state I never knew existed. Nurse practioner again ignored my worries. I started seeing a psychologist and changed oncologist. Third treatment was given by new doc and believe me the roof came off. My body went into shock, hives in my throat, mouth, tongue and went to ER where they had to infuse me with prednisone. If you do not need herceptin do not take it. After a skin biopsy showed positive to drug reaction it was narrowed down to herceptin. I never had another treatment but went into radiation for 33 days straight and my skin remained sensitive and I got radiation burn. Never had hives before in my life. My radiologist oncologist said I went through chemo when I did not need to. Radiation only had to follow due to chemo treatment but he told me when I had the lumpectomy the surgeon had removed all of my cancer. Follow your heart and you will do well.
Jude
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Cowgirl, I think since you're tumor was larger, that was why you had herceptin without question. It's us smaller people that go wanting sometimes.
Jude, I'm so sorry you had such an awful experience. I have heard stories from my onc., and she was the one that said that the first onc (changed due to change in insurance) did give me sound advice. I'm now 4 years out, and going strong. Although the added knowledge of being Her2+ is scarey, knowledge is power. I had to have an MRI in June due to a shadow on my mammo, but all is good, so apparantly something is working in my favor.
Are either one of you ladies taking an AI?
Here's to your continued good health.
Jennifer -
I am taking Arimedex for the next five years. I was under the impression it was a hormone receptive blocker but I just came home from a visit with my PCP and he told me it is a chemotherapy drug. I still get hives each day, not anything like before and I can still smell the chemo at certain times coming from my body. Has anyone else smelled the odor of chemicals emitting from their body? I want my hair to grow back it is taking forever. I do not think I will ever be the same person I was before being diagnosed.
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Arimedex IS an AI. Some refer to it as a chemotherapy. How long have you been on it, and how long have you had hives? You really need to talk to you onc. about this.
Rj, none of us are really the same after diagnosis....we are better!! Give yourself time to heal, and don't fret. Your hair will grow again.
Jennifer
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