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Old 08-18-2011, 07:44 AM   #1
sweetsunflwr
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Location: Wichita, KS
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Wink Re: HER2 learning more is it a bad thing?

I believe your right - But I do trust my oncologist and I know even if I have my doubts about what he says he will do what I feel is best for me. It is my body and my decision. We will see what happens. Cancer sure is a scary thing and I pray that one day we find a cure for it there are so many that have it and it is so sad to me. Keep your chin up and think positive as I have tried to stay positive but it is always there and never goes away no matter how hard we try... xoxo hugs to you and your baby girl... and thank you for all the information this morning....
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March 3 2010- Routine Mammogram
March 3 2010- stereotactic biopsy
March 4, 2010- Diagnoised with Breast Cancer DCIS
BRCA1 and BRCA2 - NEGATIVE
March 29, 2010- bilateral mastectomy with the left one being prophalactic--showing a 1.5-mm, invasive, component, grade 3
April 2010-Feb 2011- Reconstruction of both breasts, expanders to implants, with aerola tattooing and nipple reconstruction.
After Surgery pathology report-Pathology shows a 1.5-mm, invasive carcinoma in the setting of DCIS, grade 3
Maximum tumors the size of the DCIS being 7 mm, ER+, PR+ at 90 and 80% respectively. HER-2/neu is 3+
Taking Tamoxifen 20 mg daily for 5 years
www.byebyehooters.blogspot.com - my journey...

what lies before us are tiny matters of what lies within us, which makes us stronger
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Old 08-18-2011, 08:28 AM   #2
AlaskaAngel
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Re: HER2 learning more is it a bad thing?

Sweetsnflwr,

A bit of historical information might help you, because it may help to understand the actual lack of logic behind standard recommended treatment and why doctors "don't know" all the answers.

At the time Herceptin (trastuzumab) was being offered through clinical trials WITH chemotherapy to see whether the Herceptin would be helpful or not, for the most part "early stage" patients who were HER2 positive were not allowed to participate in the trials. Even after the trials for mostly later-stage HER2 positive bc patients showed Herceptin helped, for a while there was no recommendation for early stage bc patients who had "missed out" on Herceptin, to then be given Herceptin.

Over the years since then, the trials have not been done to show whether chemotherapy is necessary WITH Herceptin for early stage bc, or whether Herceptin ALONE is sufficient. It sounds pretty dumb to anyone with a brain and especially dumb to the people who have to go through the trauma, emotional and economic, of adding chemotherapy to treatment (along with all the support drugs for chemotherapy, such as steroids, blood boosters, etc.) But that is the status quo that all of us have had to base our choices for treatment upon.

Some of those who originally "missed out" on Herceptin found oncs who were willing to give them Herceptin "late". I am one who did not, and have never had Herceptin although I did have CAFx6 chemotherapy followed initially by some tamoxifen. I lost my hair and it regrew. I also had DCIS and a 1.6 cm IDC. I have not had recurrence. Some patients go all out and have the strongest therapies possible; some recur anyway and some don't, and most deal with the side effects of treatment regardless.

Age makes a difference. Younger patients have more recurrence. I was 51 at diagnosis.

It is hard to make the choices, based on the lack of adequate information.

AlaskaAngel

P.S. In the countries with more health care money and facilities, t is now standard to give chemotherapy plus Herceptin to patients with HER2 positive IDC. Some give 9 weeks of Herceptin and some give a year of it.

The first 2 years are the highest risk for recurrence, and from my vague impression of those on this board, those with early stage HER2 positive bc who have gotten past that point have generally not recurred whether or not they had chemotherapy and/or Herceptin -- but again, age also may make a difference.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED

Last edited by AlaskaAngel; 08-18-2011 at 08:33 AM..
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