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koala55 View Drop Down
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    Posted: May 25 2017 at 5:06pm
Hi
It's just over a year since I completed all treatment for TNBC. I was stage 2-3, grade 3, 3-4cm lump and a couple of lymph nodes involved. I had 12 weeks of taxol/carboplatin, followed by lumpectomy and removal of 25+ lymph nodes, a(complete pathological response), then 8 weeks of dose dense AC, followed by radiation. All good so far. My question is should I have my ovaries and ? Removed to lesson chance of recurrence. I am 62 and did not test positive for the BRCA gene. Just wondering if others took this option. I have spoken to my oncologist who said it could be a consideration. I try not to think about cancer too much but don't want to take chances. Thanks.
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Joanna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2017 at 5:35pm
Hi koala55:
I just completed all my treatments for TNBC, with BRCA gene negative as well, on April 26 of this year. My oncologist just spoke with me yesterday concerning the removal of my ovaries. I am also very concerned about this because TNBC is not hormone driven so I question how effective is it. A referral has been sent for me to meet with a gynecologist who specializes in this area. I am waiting to have my appointment scheduled so I can discuss further. I will let you know what she says once I have the meeting. Hopefully others will be able to post some incite into this procedure. I plan on doing research on the internet for pros and cons. I am 50 years old. I received 6 treatments of TAC followed by 33 treatments of radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2017 at 2:28am
What was the rationale your doctors gave that ovary removal could reduce chance of recurrence? If it's to reduce hormones, why wouldn't you take hormone blocking mediation like women with hormone-sensitive breast cancer? This is the first I've heard of ovaries being removed to reduce risk of recurrence of breast cancer. I've had my ovaries removed at age 45 (I am BRCA positive it was a no brainer). There were big down sides for me.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2017 at 1:51pm
He simply said that current research showed a reduction in ovarian cancer and recurring breast cancer among those who have had their ovaries removed.  That's when the referral was set up for the gynecologist.  I just have too many questions at this point. My chemo put me through menopause.  I know everything in the body serves a purpose and the idea of removing my ovaries when there is nothing wrong with them doesn't sit quite right with me. I am interested to know what percentage of reduction and what are the side effects of ovary removal.  Will it require me to be on pills to regulate my system?????  Just not sure what to do right now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2017 at 10:29pm
Usually it is only recommended for ovary removal if you test positive for the BRCA gene or another gene associated with increased risk for ovarian cancer.  Otherwise, I have not seen recommendations for ovary removal.  Is there a history of breast cancer or ovarian cancer in your family?  If there is a strong history, this could be a recommendation, but it's best to speak with a genetic counselor or a gynecologic oncologist for more information. 

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Joanna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 1:19pm
Hi Donna: I am the first in my family to be diagnosed with breast cancer. I have four sisters. I am still waiting for the call to make the appointment with the gynecologist. The gynecologist is one recommended by my oncologist. I definitely need more information. Thank you for the post and advice. My TNBC was stage 1, Grade 3 with lymph node negative.
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 2:12pm
I have the same dx, and my onc did not recommend ovary removal.  My aunt had breast cancer and still no recommendation for that removal.  I am stage 1, grade 2 no lymph involvement.  Finished chemo 60 days ago and this is my last week of RADS!!! So excited.  And, I see little tiny hairs coming back.  My next step with my med onc is a follow up in July and a mammogram on the affected breast.  So, I would really consider the "why" on the ovary removal.  I am not a doctor but I have family who is and they agree with my onc.  I had a CT scan in April, all clear.  That was about it!  Hope this helps

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 9:13pm
I have no idea about having your ovaries removed.  But this I know.  I had a total hysterectomy at 28 years old. Ovaries and uterus etc.   Endometreosis.  No cancer.  I was diagnosed with tnbc at 58 so it didn't stop the cancer.  No you wont get cervical cancer if you have a hysterectomy if they take your cervix.  But according to all Ive heard and read it doesn't usually come back there.  Your lungs, liver, brain, bones etc.  Unless of course you are Brca positive. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2017 at 1:09pm
Penny: I too was so excited when I finished everything at the end of April. I rang my bell loud and proud. My hair is growing and I was back to shaving my legs within a few weeks of my last chemo treatment on February 7th. To me it is slow growing but everyone else comments how fast it is growing. I am in the process of scheduling my follow up tests. I also developed a hardening of the outer region of my heart. I have a stress test along with another echo-cardiogram scheduled in August. The cardiologist says the hardening is most probably 99.9% from my chemo but recommended the stress test to rule out any blockage. I will have my mammogram along with a bone density in the next few weeks. I follow up with my radiation oncologist next week. My oncologist said I can get my port removed right now if I want. I am back to exercising at least 3 times a week. Energy level not at the same before I started treatment but I am getting there and only have about 5 more pounds to lose before I am at my pretreatment weight. I gained about 20 pounds with the steroids and I also received two hour fluid infusions 3 times a week starting at week four of my treatment. I had severe vomiting even with all the anti-nausea meds. Wishing you all the best and thanks for the information. I am making a list for the gynecologist.       
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koala55 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote koala55 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2017 at 5:50am
Hi Joanna,
Thanks for your reply and I look forward to your update once you have had your follow up appointment.
Best wishes for your return to good health.
Koala 55
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Joanna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2017 at 12:46pm
Hi Koala 55: My appointment has been scheduled for June 20th. I am eager to meet with the doctor. Take care. Joanna
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Joanna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2017 at 3:31pm
I had my visit with the gynecologic oncologist yesterday. After having a lengthy discussion it has been decided I will first have an ultrasound of my ovaries to make sure there are no abnormalities. If not, that will create a baseline and I will have ultrasounds every 6 months of the ovaries to compare that way if an abnormality does form it will be caught early. For me this is the best option since it is non-invasive and will give me some peace of mind. I had my follow up mammogram and everything is clear right now. I also decided to have my port removed. I had that yesterday morning in my surgeon's office prior to my meeting the specialist. Hope everyone is doing well!!! Lot's of rain here in Louisiana right now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2017 at 2:14pm
I was diagnosed at 28 years old last year with stage 3 TNBC...before treatment we did a 7 panel genetic test to see where I stood with the BRCA stuff, but that panel also included indicators in my genes for other cancers, including ovaries, to which I was came out all normal. Because of this my gynecologist and oncologist didn't recommend ovary removal or hysterectomy since I wasn't predisposed to my cancer or that area's specific cancers to occur. Since I am hoping to retain fertility this was another reason we decided to go with a less invasive approach. My doctor said if I am to have a distanc recurrence it will likely go somewhere else, but you can't guarantee it won't go to a specific spot...even with a mastectomy you can have a recurrence in the trace amount of breast tissue left.

I say at the end of the day look at your situation and try to get as much information to make a decision you are comfortable with. Second opinions can't hurt but not getting one might. Even if it's just for peace of mind because we all know a huge part of this is a mental battle as well.

I truly wish you the best and hope it all works out well. No matter what comes your way keep your head up. Everyone has hard stuff they go thru in life and for us this TN is one of them. When I get in my head to much I just think I can only deal with what I know as a fact and is in front of me right now. There are people out there in worse situations and places so if this is my battle that's ok. Anyways sorry for the long post...I hope this helps.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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