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Old 02-17-2016, 02:17 PM   #15
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Re: 10 years later non BRCA ovarian cancer

Debbie;

Thank you so much. I had a small droplet of blood and immediately went to my doctor. I am fortunate about a number of things. Firstly my regular doctor sees me within days of any calls and immediately set up scans, etc., secondly that I had a thickened uterus likely due to taking arimidex for so many years which lead to the overall scans and thirdly that I received care at the cancer centre quickly. This is why I wanted to post here. Even after the internal ultrasound which indicated a problem it still didn't register that it could be ovarian cancer. It is very different from breast cancer both in symptoms and in treatment. It is a very sneaky disease. I think that once you are post menapausal you should begin having the CA125 each year (or more often) and watch its trends. I was also shocked to realize that the oncologist who is handling my ovarian treatments told me that he doesn't handle breast cancer and if I was found to be BRCA+ I would have to be referred to a breast specialist again (my wonderful oncologist retired). I wonder if the reverse is true. Are oncologists so specialized? If I hadn't asked I wouldn't have realized. You might ask your daughter about that as it is very scary I think.

Take care and all best wishes,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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