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Old 01-13-2018, 02:29 PM   #1
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 665
New Genetic Testing

Hi all;

I finally saw an oncologist for my ovarian cancer who actually knows about breast cancer. My ca125 numbers have been going up. I had an abdominal CT and it was clear expect I have a gall stone which may be causing it to raise....I pray so. In any case he told me he wants me to get genetically tested again. He said that he is 100% convinced that I am BRCA positive and when I was tested I had only a VUS. He said that testing is much more extensive and better now than even 2 or 3 years ago so referred me back. He said there is a new (or several can't remember) treatment for BRCA+'s now. I have had chemo twice and having additional treatments of it apparently would cause me to be ineligible for clinical trials of these exciting new drugs. I don't know if that applies in the states or just Canada but I thought this might be of interest to some here. Then this past weekend, right after I got home I found a lump on my inner shoulder. I saw my MD who thinks this is either a lymph node or a fat lump but is sending me for an ultrasound this Wednesday. I guess it never really ends.....the fear of recurrence. Take care all. 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
Nice! My hair came back really curly. Hope it lasts lol.
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
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Old 01-13-2018, 06:00 PM   #2
Becky
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Location: Stockton, NJ
Posts: 4,092
Re: New Genetic Testing

I just got retested too because testing is different and better. I had 21 genes tested. I was fine but there ate other genes to test like the Rad51c and d. I had 28 genes tested. I had a variant of unknown significance on rad51d. They told me 99.9% of these continue to be nothing. Who knows?

I will cross all my fingers and toes for you.

Hugs
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-13-2018, 06:12 PM   #3
Cathya
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Location: Ontario, Canada
Posts: 665
Re: New Genetic Testing

Hi Becky;

I was totally shocked when I was diagnosed with ovarian cancer. i am so glad you're continuing to take arimidex. I often wonder if I would have had ovarian cancer at all if I had continued with it. I would take the ca125 at least yearly if I were you. It's not the number but the trend that should be watched. I just don't think enough is known about our genetic mutations.

My best, Cathy
__________________
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
Nice! My hair came back really curly. Hope it lasts lol.
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
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Old 01-14-2018, 06:30 AM   #4
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,092
Re: New Genetic Testing

I had my ovaries and tubes removed 12 years ago so that I could confidently take Arimidex. I was in chemopause after chemo but not in full menopause.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-14-2018, 09:14 AM   #5
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 665
Re: New Genetic Testing

They do not recommend I take arimidex or consider these kinds of treatments necessary with ovarian cancer.....at least where I go. Given that I have had my ovaries, tubes, etc. removed do I still produce hormones that could be affected by arimidex. I still would like to take it.

Thanks Becky,

Cathy
__________________
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
Nice! My hair came back really curly. Hope it lasts lol.
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
Cathya is offline   Reply With Quote
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