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Re: Asked why I am stage IV again - clearing up??
Greetings Linn,
I thought I would try to aid in your quest for answers. Granted I am no medical doctor but I work with doctors all day long. And I am a Stage IV breast cancer patient. I live in the world of medicine in my professional and personal life. My understanding that when cancer is Stage IV that means it has metastazied outside of the breast area into areas such as: liver, lung, brain, spine, and bone. Dr. Miller is known as one of the best in Indiana for sure. I am interpreting your information as the cancer was now found on the supraclavicle area. That confuses me a bit, too. If your cancer has not spread to tissue or bone then indeed you might be stage IIIC. It might help to get a second opinion in the Indpls area.
What I hear you asking is the treatment question. If you are truly Stage IV then you remain in treatment indefinitely even if you hit NED, The reasoning behind indefinitely is that women who have reached NED, and get off treatment end up having the cancer return. Steph and AndiBB have been fortunate to remain NED without current treatment. If you are Stage IIIC then there is an end in sight. Indeed, this question must be clarified for you.
Whereas we do not know what tomorrow brings I can tell you that the past three years as a Stage IV patient I have continued to live my life: married to a great man, working fulltime, family, friends, travel, etc... I have been NED since August 2012 but get my Herceptin and Perjeta every three weeks. It is not fun being tethered to the infusion pole but I will take it over the alternative. Hope this helps.
Take care,
Jackie
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10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
Last edited by jacqueline1102; 12-18-2014 at 08:06 PM..
Reason: needed to change some things
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