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LeahM · 01-12-2015, 06:27 AM

Hi Kathy
A week ago today I had my uterus, fallopian tubes and cevix removed. Ovaries remained even tho my ER+ was 5%. It was a hard decision to make and very personal but I will share.

I was told back in the beginning that my ER+ status was so low that (maybe) 10 years ago it would have been considered negative, that I wouldn't even be on tamoxifen. Times have changed so now I am considered positive.

After a years worth of conversations between me and my onc, me and my gyn and my gyn and onc it was decided to keep my ovaries but get rid of the rest. And here is why:

Recent stud.ies show that removing your ovaries at a young age (I amm now 42) could increase your risk of heart disease, and death from heart disease by 40%. Heart disease is the #1 killer of women. Removing my ovaries would not stop my body from producing estrogen and I would remain on Tamox or switch to an AI.

Further studies are showing that ovarian cancer actually begins in your fallopian tubes. My gyn now recommends to women who want their tubes tied to have them removed instead.

My uterus had to go (in my mind) as I have a family history of uterine cancer and while slim there is a chance that tamox can increase your risk of uterine cancer.

And yes, all these studies were shared with me by my gyn.

So I keep my ovaries and will someday naturally enter menopause. Meanwhile I will no longer get my period which is a huge relief as they have been crazy and horrible since they came back after chemo. Which was another reason why I wanted to have this surgery, to stop my periods.

All that being said let me say this too. I know in my heart if my ER% had been higher I would have had my ovaries removed too. I hope I don't ever regret my choice to keep them.

Plus, fear. Fear had a lot to do with this decision. My fear of uterine cancer far outweighed my fear that my ER status would cause a cancer metastasis. The women in my family that had breast cancer were all "cured" for the remainder of their lives but then had a separate cancer in their uterus.

I wonder if there is some genetic BRCA that causes this that we haven't found yet?

Best
Leah

01-12-2015, 06:27 AM	#5
LeahM Senior Member Join Date: May 2012 Location: Bethlehem PA Posts: 395	Re: Hysterectomy for triple positive bc Hi Kathy A week ago today I had my uterus, fallopian tubes and cevix removed. Ovaries remained even tho my ER+ was 5%. It was a hard decision to make and very personal but I will share. I was told back in the beginning that my ER+ status was so low that (maybe) 10 years ago it would have been considered negative, that I wouldn't even be on tamoxifen. Times have changed so now I am considered positive. After a years worth of conversations between me and my onc, me and my gyn and my gyn and onc it was decided to keep my ovaries but get rid of the rest. And here is why: Recent stud.ies show that removing your ovaries at a young age (I amm now 42) could increase your risk of heart disease, and death from heart disease by 40%. Heart disease is the #1 killer of women. Removing my ovaries would not stop my body from producing estrogen and I would remain on Tamox or switch to an AI. Further studies are showing that ovarian cancer actually begins in your fallopian tubes. My gyn now recommends to women who want their tubes tied to have them removed instead. My uterus had to go (in my mind) as I have a family history of uterine cancer and while slim there is a chance that tamox can increase your risk of uterine cancer. And yes, all these studies were shared with me by my gyn. So I keep my ovaries and will someday naturally enter menopause. Meanwhile I will no longer get my period which is a huge relief as they have been crazy and horrible since they came back after chemo. Which was another reason why I wanted to have this surgery, to stop my periods. All that being said let me say this too. I know in my heart if my ER% had been higher I would have had my ovaries removed too. I hope I don't ever regret my choice to keep them. Plus, fear. Fear had a lot to do with this decision. My fear of uterine cancer far outweighed my fear that my ER status would cause a cancer metastasis. The women in my family that had breast cancer were all "cured" for the remainder of their lives but then had a separate cancer in their uterus. I wonder if there is some genetic BRCA that causes this that we haven't found yet? Best Leah __________________ 39 year old wife, mother of one and nurse. April 20, 2012: Dx Invasive Ductal Carcinoma April 25, 2012: ER+(5%), PR-, HER2+++ May 10, 2012: BRCA 1,2 Negative May 23, 2012: MUGA Scan EF 70% May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed June 5, 2012: Drains OUT! Ahhhh.. June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early" July 10, 2012: Started 6 rounds of TCH with weekly H Sept 5, 2012: MUGA 65% Sept 20, 2012: CAT scan of brain clear! Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013. Nov 19, 2012: Port out! Dec 5, 2012: Started radiation Dec. 10, 2012: MUGA 65% Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER! Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013. Jan 29, 2013: Begin 5 years of Tamoxifen. Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months. Mar 6, 2013: EF 60% May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good! June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms... June 11, 2013: EF 60% June 25, 2013: Last Herceptin. wow... Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures. Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on. Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this. Feb 2014: Tumor markers within normal limits. May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts. Oct 2014: Tumor markers within normal limits. May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt? Nov 2015: Tumor markers WNL. Follow up bone scan clear. Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know. June 2016: Tumor markers WNL. Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia. Nov 2016 Brain MRI clear. Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know. www.onmywaytosurvivorhood.blogspot.com www.thechemobag.com www.facebook.com/thechemobag