I was diagnosed with IDC in April 2009. Tested positive for BRCA2 (tested becuase had 3 independant tumours in left breast). Had double skin sparing mastectomy with immediate DIEP flap reconstruction on 16 June 2009. AFTER operation at combined clinic surgeon said "poor prognosis" due to 1) right sentinel nodes were clear but right both sentinel nodes in right breast were infected. A radical lymph node dissection was done. First found 19 lymph glands - 14 were positive. During further testing @ lab another 4 deeper lymph glands were found - 3 positive. There is extra-nodal spread. 2) the cancer was not ductal carcinoma but infiltrating lobular carcinoma. I have done extensive reading and do not find any info relating to a site where you can explain your specific case to ascertain the risk/prognosis/lifespan expected etc. I have to have a hystorectomy as soon as my 8th chemo session is complete, go onto hormone removal therapy, then 8 weeks of radiation. Can anyone give me any more information - I feel totally unenlightened. How and when do they check to see if there is any further spread - they say we need to assume it has spread. What tests can detect/check for lobular carcinoma? I need more information relating to the symptoms I have - if anyone canhelp!
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Q: Infiltrating lobular carcinoma, BRCA2 positive, extra-nodal spread 19 out of 23 nodes positive.
Hi - I'm sorry you didn't get better news. I think the reason you don't find a site where you can give your symptoms/diagnosis and get more information is that every woman's cancer is specific to her - there are averages, but they really don't do you much good, as there are so many different variables. This is clearly something you need to discuss thoroughly with your oncologist, rather than try to find specific help online.
Going forward, you'll no doubt be seeing your oncologist frequently - probably every 3 months to start. You'll get both manual exams, and frequent bloodwork which will tell you whether the cancer has spread to your liver. The doctor will ask you questions about possible bone cancer symptoms. The place your cancer would spread would be chiefly liver or bones; secondarily, lungs or brain. You might also be blood-tested for tumor markers, which is a general (though not always accurate) sign that the cancer is growing.
Please make a list of specific questions, and tell your oncologist you'd like a long-enough appointment to have them answered. You'll probably need to advocate for yourself here. If your oncologist is too impatient to spend enough time to answer all your questions thoroughly, and to have a discussion, then I suggest you get a new oncologist - this person will be directing your treatment for years, and you need to have a good relationship with him/her.
Good luck, and please stay in touch here; we can help. PJH
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