New Posts New Posts RSS Feed - Remove Ovaries??
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Remove Ovaries??

 Post Reply Post Reply
Author
jelby View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 27 2011
Location: Rhode Island
Status: Offline
Points: 4
Post Options Post Options   Thanks (0) Thanks(0)   Quote jelby Quote  Post ReplyReply Direct Link To This Post Topic: Remove Ovaries??
    Posted: Jun 02 2012 at 12:56pm
I was diagnosed with TNBC, Stage 1, Grade 3, No lymph node involvement in March, 2011. Had routine treatment...Lumpectomy, chemo & rads. Finished treatment in Nov. 2011. Just saw my Oncologist this week with a good report however he is recommending that I have my ovaries removed. I am 57 so have no need for them just very concerned about the hormone issue....already having a tough time with hot flashes/night sweats. Can any of you weigh in on this issue? Is there a greater chance of ovarian cancer with triple negative diagnosis? I am just now starting to feel like my old self again....Would really appreciate some feedback..especially from those who have had this procedure.
Back to Top
Charlene View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 14 2010
Location: Atlanta, GA
Status: Offline
Points: 613
Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 3:59pm
Have you had the genetic test for BRCA 1 and 2?  I'm certainly no expert, but I don't think I have heard of the recommendation to remove ovaries unless you test positive for BRCA.   I could be wrong, so I will be watching for others to respond.  Wish you the best in your decision making and your continued good health.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
Back to Top
outnumbered View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 02 2009
Location: New Jersey
Status: Offline
Points: 525
Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 6:13pm
Unless you are BRCA+ there is no reason to remove your ovaries.  As a triple negative, your hormones do not affect your risk of breast cancer recurrence.  And, unless you have a vast family history of ovarian cancer, you are at no additional risk for ovarian cancer than anyone else.  I am not a doctor, though.  I would revisit this, and perhaps get another opinion.  

Edited by outnumbered - Jun 02 2012 at 6:14pm
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
Back to Top
jelby View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 27 2011
Location: Rhode Island
Status: Offline
Points: 4
Post Options Post Options   Thanks (0) Thanks(0)   Quote jelby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 6:20pm
Hi Charlene, Thanks for responding. I have not had BRACA testing. At the time that I was first diagnosed, I went back and forth on the decision but ultimately decided not to. I don't have daughters...being the first reason. The second reason is that if positive I would almost certainly have had a double M. Although it would not necessarily prevent coming back elsewhere. There is a bit more to the story... Almost three years ago I was diagnosed with an autoimmune disease, Dermatomyositis...(a close cousin to Lupus)...in the rhematoid family...effecting the skin, muscles and joints. Apparently there is a higher risk of developing cancer within the first 2 years of diagnosis.....I was just about at the 2 year mark when I got the TNBC diagnosis. The great news is that the chemo has put this disease into remission......that is until a month ago when symptoms started creeping back. So its quite possible that my Oncologist is taking this recent setback as well as his conservative approach in his recommendation. I don't feel that there is any immediate action that I need to take. ..but I will need to make a decision one way or an another....I'm now at the research stage, hence my post. I also want to mention that although I haven't posted on this site often, this has been my life line for the past year. I found tips on dealing with reactions to chemo and radiation, found out what to expect during every step of this horrible disease..and was able to get the latest information on studies and research data..I feel as if I know all of the senior members personally...from reading their very informed, thoughtful and compassionate responses. I cried and laughed with all of you...my TNBC family! This is much more than I planned on writing but somehow it just felt right. Thanks again Charlene.
Back to Top
MsBliss View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 25 2009
Location: Lost Angeles
Status: Offline
Points: 722
Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 7:16pm
Jelby, I am just a layman, but there is no corollary vis a vis the ovaries, tnbc, and or autoimmune issues.  You def need a second opinion. 

What data do you have on your tumor?  Stage 1, grade 3, but any other info?  Perhaps there is other pathology that your onc has with regard to your particular situation?
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
Back to Top
Katdoll View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 13 2012
Location: WA
Status: Offline
Points: 214
Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 7:33pm
Jelby, I think it's true that TNBC alone is not a reason to have ovaries removed, but given the added complication of your auto-immune issues, maybe you should get a second opinion from a gynecologic oncologist--someone who specializes in cancers of the female reproductive organs.  I am BRCA1+ and had my ovaries and fallopian tubes removed two and a half years ago.  I wasn't even pre-menopausal so the instant menopause was tough, but not as tough as I feared.  The surgery was a breeze. There's another webite--www.facingourrisk.org--devoted to hereditary cancer issues (mostly BRCA mutation).  There would probably be many women tuning in there who had ovaries removed when they were in your age bracket and could share their experiences.  Good luck with your decision, and take care.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Online
Points: 4656
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 8:09pm
Dear Jelby,

I almost didn't post on your thread because you have already received some excellent responses...but I wanted to focus on BRCA testing. I would encourage you to test because, reading between the lines, I assume (always dangerous to do) that you have at least one son. If you do test BRCA+ your son/s have a 50-50 chance to inherit the mutation. If they are positive they are increased risks for various cancers-prostate, breast, melanoma and pancreatic come to mind. Also, there are certain treatments, available in clinical trials that seem to be promising if you are BRCA+. I would suggest you speak to a Certified Genetic Counselor and get that professionals take on testing.

And if you do test BRCA+ that would be a reason to have your ovaries removed. Sadly, being BRCA1+ confers an approximately 45% risk of getting ovarian cancer and if you are BRCA2+ you are at an approximate 25% of getting ovarian cancer. And these risks are in addition to a BRCA+ woman's risk for getting breast cancer (which is about 70-85%) in her lifetime. 80% of ovarian cancer in this country is detected as Stage III/IV because the tests for early detection are not accurate.

Good luck to you, whatever you decide.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2012 at 10:37pm
This whole TN journey reminds me of what it must feel like to be bitten by a junk yard dog that just won't let go!
 
I can't add to the good thoughts of those above with any credibility. If this were me, I'd seriously look into the 2nd opinion and get down to brass tacks as to why you would need the surgery... BRCA+ is really the best argument. Has your doctor done tumor marker testing on the ovaries for you? If he/she has done them on a regular basis so that you have a baseline and now they are rising, that might be another consideration for taking the next step.
 
The 2nd opinion will give you information, and if you're lucky, enough clarity to make the type of informed decision you're probably more comfortable with. My poor doc is accustomed to me saying, "Prove it!" and is very forthcoming with stats as well as gentle prodding.
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2012 at 7:34pm
Just to add to the chorus, I wouldn't yank my ovaries out without either a BRCA+ test or a lot of family members who have developed ovarian cancer.   Even after menopause ovaries make some estrogen, and this low level of hormone helps to keep our bones and brains healthy.   As for the BRCA testing, why not test?  That way, if you are positive you can reduce your risk and if you are negative you can feel ok about leaving your breasts and ovaries alone.

Good luck!
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.