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Old 10-04-2016, 02:35 PM   #1
tricia keegan
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DCIS & her2+?

Does anyone know how this is treated now? Just asking for a friend as its been eleven years since my own dx and not sure what has changed.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-05-2016, 07:19 AM   #2
snolan
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Re: DCIS & her2+?

I had both. HER2 was treated with chemo TCH and DCIS radiation due to mine being at the skin level down to my chest wall.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 10-05-2016, 03:00 PM   #3
tricia keegan
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Re: DCIS & her2+?

Thanks Snolan, the lady I know is early stage and Onc suggesting no herceptin so was concerned this was right?
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-05-2016, 03:45 PM   #4
snolan
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Re: DCIS & her2+?

I was stage 1 and still did herceptin. Early on when herceptin was just strating it wasn't used for early stages but is now. You may want to recommend a second opinion. It is the main treatment specific to HER2, mire of an immunotherapy.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 10-10-2016, 03:15 PM   #5
tricia keegan
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Re: DCIS & her2+?

Thanks and have done that!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-14-2016, 10:12 PM   #6
VDC
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Re: DCIS & her2+?

DCIS is usually NOT treated with chemo or herceptin. It is usually treated with surgery followed by radiation. Mine was ER-, PR- and HER2 + at 3+. I begged for herceptin to try to reduce the chances of recurrence but was denied. Unless the DCIS is found to be in the chest wall or skin (which by definition DCIS is only in the ducts and lobules) it is treated by surgery to remove the lesions followed by radiation.
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Old 11-15-2016, 08:26 AM   #7
tricia keegan
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Re: DCIS & her2+?

Thanks for the info VDC, I'm surprised at that and had thought all her2+ would have herceptin regardless.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-15-2016, 11:48 AM   #8
VDC
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Re: DCIS & her2+?

The thing is, DCIS is NOT considered invasive. That means it lacks the ability to spread beyond the ducts or lobules. However, 25% of DCIS (and particularly high grade including HER2+) is found to be invasive at the time of surgery. IF the DCIS is found to have invasion or micro invasion then herceptin is used as treatment and chemo as well. But as long as the DCIS is found to ONLY be DCIS, then neither chemo or hercpetin is allowed.

The interesting thing is that sentinel lymph nodes are NOT usually removed with DCIS for the same reason. If it isn't invasive then there should be no way for the cancer to spread....in theory at least. There was a research study that DID take a sentinel lymph node with DCIS and it found that 2% of DCIS cases DID have micromets in the sentinel lymph node. ALL of the 2% with micromets had biopsies prior to the dissection. It was unknown if the biopsies had allowed the pure DCIS to spread beyond the ducts or what other reason there might be for the few cancer cells in the lymph nodes.
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Old 11-16-2016, 05:31 PM   #9
Whonoze
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Re: DCIS & her2+?

I was already on Herception for Stage IV when I got DCIS. I had a lumpectomy and then a double mastectomy, which my surgeon did not want to perform and tried to talk me out of.

Almost 10 years later, and I'm still here.
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Old 11-24-2016, 01:04 AM   #10
sarah
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Re: DCIS & her2+?

too risky not to get Herceptin. DCIS can become invasive and metastatic, don't risk it.
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Old 11-25-2016, 11:42 AM   #11
VDC
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Re: DCIS & her2+?

Herceptin isn't an option for DCIS. I tried, I begged, I sought a second opinion. Because DCIS is not considered invasive it is NOT given for DCIS.....even when desired by the patient. Believe me, I tried!

So, even if WE think it is required for DCIS, the medical community does not think Herceptin is allowed for DCIS...unfortunately.
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Old 11-29-2016, 03:42 PM   #12
tricia keegan
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Re: DCIS & her2+?

Thank you Sarah and VDC, hopefully in time this will change.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 12-04-2016, 01:12 PM   #13
sarah
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Re: DCIS & her2+?

I thought now it was given to all HER2 patients. Should be.
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Old 12-05-2016, 03:04 PM   #14
tricia keegan
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Re: DCIS & her2+?

I agree Sarah!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
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