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Old 06-16-2015, 01:06 PM   #1
v-ness
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Join Date: Nov 2009
Location: western ma
Posts: 280
Re: 10 years later non BRCA ovarian cancer

cathy - i am sorry to read that you have to deal with cancer yet again but so happy to read that you caught the ovarian at stage 1. that is amazing, because usually it's caught so much later because of the lack of symptoms. my mom had a couple vague symptoms even when hers was late stage. i was worried about the ovarian cancer so i had my last remaining removed as soon as i could. unfortunately, mom's was a rare one - primary peritoneal - and you don't even need to *have* ovaries to get it. i would be really interested to hear if you find anything out about an association with her2. in fact, i might ask my oncologist, who was also mom's. there is one benefit to remaining on tamoxifen for the foreseeable future, and that is that my onco stays on top of me even beyond 5 yrs out. good luck to you, i hope the chemo goes well and you kick it! valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 06-18-2015, 12:56 PM   #2
Cathya
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Location: Ontario, Canada
Posts: 752
Re: 10 years later non BRCA ovarian cancer

Hi Valerie;

I am definitely lucky as I had no symptoms at all. According to the pathology report it is a high grade serous carcinoma arising in a background of borderline tumour. I have an appointment with the oncologist next Friday and am wondering how to approach this. I am asking about Her2 and am also wondering about ER/PR. I'm wondering about genetic testing. They are sending me on but am thinking that I should have both my breast cancer and ovarian tumours tested and compared. I would be very interested in what your oncologist says and any ideas. You were so right to worry about this and take action. Honestly it never crossed my mind. How foolish in hindsight. I will post any info I get for sure.

Take care,

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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