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Old 06-27-2012, 05:22 PM   #1
dawny
Senior Member
 
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
Now DCIS - may have had it for 12 years!

Hi all
I found a new lymph node lump a few months ago, watched and waited for a while, decided to get it out, so I had a Node dissection with only 1/11 nodes affected, which is great (!) and only a couple of days before surgery the BS found another lump in the same breast, so she took that too, as well as the area my primary lump was. This came back as DCIS. So now I have to decide what to do about that. My BS is on holidays , so yesterday i went to another BS just to check everything was healing ok. He came into the room and said "I haven't seen you for 12 years" I was wracking my brain, thinking "have I met you before?" and then I remembered that when I was pregnant with my first child, I had some bleeding from the nipple. I was sent this BS, he had a look and did some reading, and said that it was a rare thing, but sometimes just happens during pregnancy. He didnt do a mammo or anything else. That was the end of that, no more symptoms, new baby, life was good. Now he thinks maybe I had DCIS back 12 years ago, and it developed into stage 1V invasive cancer last year. He can't be sure of that, of course, but talked about writing a paper, so other BS can keep an eye out for it. Now I am beating myself up over it, why didn't I go back after having my son to get it checked out again?. Obviously I wasn't thinking about cancer back then. Anyway, now I have to decide what to do next, if it has been there that long and already turned invasive, shall i just have a mastectomy? I now wish I had that last week, I am still recovering from that surgers, I don't like the thought of going straight back in! I am such a wimp, I hated all the drainage tubes, and blood! My other option is to wait and have a mastectomy if it goes astray again.

Any suggestions?

Thank you for listening to me go on and on!

Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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