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Old 08-20-2011, 12:59 PM   #1
chekmark
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Re: HER2 learning more is it a bad thing?

I just want to make sure that I understand this correctly. You were diagnosed a year and a half ago and are thinking about doing herceptin now? I also had a 1.5 cm her2+ tumor with neg nodes and was told I needed both chemo and herceptin from the get go and started on femara. (Like tamoxifin but for post menapausal). Can they even do herceptin this late in the game? You got my head spinning. Like the others have said I think you should maybe consider a second opinion or have a heart to heart with your current oncologist. Yes this cancer thing is a very scary thing and unfortunately we have to deal with it forever. l hope that you qet the answers that you are looking for so that you can have some piece of mind. Good luck to you.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 08-20-2011, 01:36 PM   #2
KirisMum
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Re: HER2 learning more is it a bad thing?

Chekmark, you've misunderstood. Her tumor was 1.5mm, not 1.5 cm - one-tenth the size of yours. Personally,I think your oncologist is giving you wise advice, sweetsunflwr. Treatment is not without its own side effects, even Herceptin. AND he encouraged a second opinion with Kansas, which I would certainly follow up on, just for my own peace of mind.
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Old 08-21-2011, 07:51 AM   #3
chekmark
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Re: HER2 learning more is it a bad thing?

My mistake, so sorry. Well then that changes everything. I was told that if mine was as small as yours that I would not of needed anymore treatment. You are so fortunate to have caught it so early. We all just have to pray and hope that the monster stays away forever but we have no control over it. Kirismum, I have been following your story and so glad that your daughter is doing so well. She has been so strong, god bless you both.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 08-21-2011, 05:22 PM   #4
MJo
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Re: HER2 learning Tmore is it a bad thing?

I was T1b -- 55mm or 1/2 centimeter. That was six years ago when Herceptin was just coming out of clinical trials. I had an aggressive oncologist, plus I wanted to hit the cancer hard. Now, six years later, it sounds like the medical community is moderating a bit. I know that adriamycin -- the Red Devil -- isn't routinely used any more. Maybe with your tiny tumor you can avoid chemo, but I agree with the other women here that you need to get a second opinion about Herceptin. I think er I remember a quote from Dr. Slamon, who discovered Herceptin, that every women with Her2 cancer should get Herceptin. One of the members here- Jean - got Herceptin one year after diagnosis, I think.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 08-22-2011, 08:24 AM   #5
AlaskaAngel
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Re: HER2 learning more is it a bad thing?

Herceptin works about half the time. But I agree with MJo and StephN, and would give it and/or ovarian ablation strong consideration, especially if you are not yet in menopause -- even if just the briefer course of Herceptin. I don't know how old you are but your photo is beautiful and looks like you are young.

AlaskaAngel
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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
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Old 08-22-2011, 08:42 AM   #6
Hopeful
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Re: HER2 learning more is it a bad thing?

Ok, I'll make it even more user-friendly - here are salient quotes from the article I linked above, posted in the Articles of Interest Forum:

With the absolute benefits of treatment yet to be determined, investigators also are looking closely at the risks associated with skipping adjuvant treatment.

The findings of an observational cohort study presented at the annual meeting of the American Society of Clinical Oncology (ASCO) suggest that women with early HER2 positive T1aN0M0 breast cancers can safely do so because of the low distant recurrence rate observed in this patient subgroup. A higher rate was observed in those with T1bN0M0, indicating that adjuvant systemic therapy may be more relevant in this patient population.

The study assessed outcomes among 237 women with HER2-positive T1a (116 patients) or T1b (121 patients) tumors diagnosed between 2000 and 2006, all of whom had negative nodes and no metastases. Most did not receive adjuvant chemotherapy or trastuzumab.

With a median duration of follow-up of 5.8 years, the rate of distant recurrence was 0.9% among patients with T1a tumors versus 5.8% among those with T1b, lead investigator Dr. Louis Fehrenbacher, an oncologist with Kaiser Permanente in Vallejo, Calif., reported in a poster presentation, analyzing data from the tumor registry of the Kaiser Permanente Clinical Care Program of Northern California.

Results for the actuarial distant recurrence-free interval showed a 5-year rate of 96.5% for the patients as a whole, with 99.1% and 94.0% in the T1a and T1b groups, respectively.

"The take-home message is, I think, the T1a's have too low of a risk of distant invasive recurrence to justify chemotherapy or trastuzumab," Dr. Fehrenbacher said in an interview. "We need to specifically individualize the risk of the patient based on the size of their primary [tumor], because the T1a's and T1b's are quite different in our findings."

In a recent review article looking into whether the existing data supports a definitive treatment threshold for patients with T1aN0M0 or T1bN0M0 HER2-positive breast cancer, Dr. Pusztai, along with lead author Dr. Catherine M. Kelly of Waterford Regional Hospital in Waterford, Ireland and colleagues, wrote that "a blanket recommendation to treat all small HER2 positive breast cancer with trastuzumab-based therapy will almost certainly lead to clinically significant cardiotoxicity in some without any benefit in breast cancer recurrence."

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Old 08-22-2011, 10:51 AM   #7
alicem
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Re: HER2 learning more is it a bad thing?

Have you considered having an Oncotype DX test?

http://www.breastcancer.org/symptoms...ncotype_dx.jsp

Just one more tool that might help you make a decision.

I agree with Steph, a second opinion would be valuable!
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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