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Old 05-18-2015, 02:05 PM   #1
mscaruso
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Prophylactic Ovary/Tube removal for ER/PR - ??

There is much research out there for prophylactic oopherectomy/salpingectomy if you are BRCA +, but not BRCA -

I know there are some gals here who have had this done - and would love to know why. I have discussed this briefly with my onc early on, but as my treatment draws to an end, it is something that has been weighing on my mind. I'm prepared to do anything to reduce my risk of recurrence, but only if the studies back it up.

To date, most studies I have seen support the surgery for BRCA +, not - . There is a clear benefit there.
There are only 1 or 2 studies which seem to suggest some benefit. What have you guys heard?

Tinkerbells
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BMX, ACTHP, no rads
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Old 05-18-2015, 04:01 PM   #2
sassy
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Re: Prophylactic Ovary/Tube removal for ER/PR - ??

Tinker bells,

I believe most of us who have had our ovaries removed have done so based on a positive hormonal status as opposed to BRCA status. I do not have any information concerning BRCA.

ER/PR positive Breast Cancer is fed by those hormones and chemical suppression of or removal of ovaries for premenopausal women is desired for the reduction of hormone presence.

Hope this helps.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!
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Old 05-19-2015, 11:06 AM   #3
Becky
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Re: Prophylactic Ovary/Tube removal for ER/PR - ??

I am 50% er positive but pr neg. I had my ovaries and tubes removed for several reasons. I am NOT Brca positive.

1. I wanted to be postmenopausal so I could take an aromatase inhibitor versus tamoxifen because they had better survival statistics.

2. My paternal grandmother died fom ovarian cancer

3. There are statistics that women who start getting their period later or go thru menopause earlier have a decreased risk of bc.

4. Women who exercise hard enough to have decreased body fat and hence stop getting their menses have a big decrease of getting bc. No periods so don't have big rush of estrogen every month to cause ovulation and decreased body fat too as body fat also produces estrogen.

5. As you have said, oophorectomy greatly decreases the risk of bc in Brca+ women however, these women tend to get triple negative cancer and not hormone positive cancer - especially brca 1 women. Yet oophorectomy helps them. One of the reasons researchers think why is because all bc starts by a hyper estrogen state. Too much estrogen or exposure over a longer period of time etc. So, I figured if it helped a brca woman, it might help me too. Shut it off and shut it down.

6. There is evidence that shutting down the ovaries by any means improves survival however, this is mostly done on women with hormone positive cancer.

It is certainly a hard decision bit if it gives you any pause, it is an easy opertion and a quick recovery. We are all here for you.
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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
Prolia every 6 months for osteopenia

NED 14 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"

Last edited by Becky; 05-19-2015 at 11:08 AM..
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Old 05-19-2015, 05:48 PM   #4
Heathcliff4
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Re: Prophylactic Ovary/Tube removal for ER/PR - ??

Hi Tinerkerbells,

An option would be to have monthly Zolodex shots to shut down your ovarian function, if you are considering the surgery but are unsure. I have been doing this for almost a year (and just switched to every 3 months). I am ER/PR positive, not BRCA positive.

Good luck with your decision.

Kathryn
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8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
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Old 05-20-2015, 08:34 AM   #5
mscaruso
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Re: Prophylactic Ovary/Tube removal for ER/PR - ??

Thanks for all the responses. Becky, yes, the idea that triple negatives who are BRCA + get oopherectomies is what has my wheels spinning. The ovaries continue to dribble out various hormones and androgens even post-menopause. There is one study out there that seems to suggest it is the androgens that fuel some of the breast cancers. My onc is very conservative, so I will revisit the issue with her. I am finishing up H soon, so I have some time. My GYN used to be gynecological oncologist - now in private practice for high risk patients. I am going to bring it up with her as well.

Thanks guys! Bright wishes for good health for all my sisters.

Tink
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Old 05-20-2015, 08:45 AM   #6
europa
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Re: Prophylactic Ovary/Tube removal for ER/PR - ??

I did the zoladex shots for 2 months and stopped. I had every side effect appear and in the most magnified way. I gained 17 pounds in 2 months , had a face full of menopausal acne, major hot flashes and severe joint pain. So because I was already peri-menopausal (they ran tests) and my original tumor was not super dependent on estrogen, they gave me the thumbs up to stop the shots. I will however be getting an oopherectomy when I'm 46 as it's closer to a natural menopausal age.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy

www.mychemobag.org
www.facebook.com/mychemobag

7 YEARS NED
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