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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2020 at 9:07am
Last fall my friends mother in her very late 70's was dx with pancreatic cancer. I was surprised they suggested genetic testing because of her age. She doesn't know many of her relatives so didn't know of any real family history with cancers. Turns out she is BRCA +. The mom is being treated at Stanford. My friend in her mid-late 50's is +. She had a hysterectomy this summer and now is in process of meeting with a pancreatic specialist. She lives in Oregon. One of her younger  sisters had had a phyllodes tumor maybe 15 years ago. She is also +. The youngest sister doesn't want to be tested. Interesting that this is coming up at their later ages. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Daisy4762 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy4762 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2020 at 7:40am
Hello all, I hope everyone is doing fine. I have not posted for a while, and in the meantime have been for various tests. It seems I am throwing up all sorts of oddities to my team. I could not find any mention of these things on the forum when I searched, so am writing to ask if anyone has any experience of:

- internal mammary chain node mets. I have a 6mm IMC node which my onc will presume metastatic and treat as such with extra rads and chemo. Apparently it cannot be removed because of the location (nor can it be biopsied hence the assumption). Apparently the size makes it indeterminate. I am worried about the lack of surgical option here, and have spoken with another UK patient who *did* have hers removed (and another who didn't and now has secondaries in the lung...)

- 8mm spleen abnormality. My CT showed up clear of lung, liver, bone mets so my onc is optimistic this is nothing sinister because it is usually a late stage site of mets in her view. However, we will PET scan to check.

- enlarged thymus. Again, we will PET to check, but my onc is confused by this one. She said by my age (38) it should be smaller than it shows, but she genuinely does not know how worried to be because it is a rare finding.

Truly I feel blessed to be so special with all these rarities(!) Any thoughts v welcome.
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clifford1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2020 at 10:52pm
My mom also died from pancreatic cancer and I was diagnosed with TNBC in 2012. The breast surgeon said there might be a link between pancreatic and breast cancer. I am neither for brca and the other 50 or so breast cancer genes. I wonder if researchers are missing something. 
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 2:59am
Dear Clifford,

Have you had more extensive genetic testing than breast cancer genes? 

Do molecular tests like Foundation Medicine, Tempus, Caris ring a bell?

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 3:00am
Dear Daisy,

Please let us know your PET results and wishing you best of luck with the scans.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Daisy4762 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy4762 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 5:22am
also on the genetics side of things in case it is useful, I am being tested for brca1, brca2 and palb2. My brother, with a colon cancer history, is also being checked for lynch syndrome.
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