Topic: Anyone happy they had their ovaries removed (RRSO)?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Mar 21, 2021 10:27AM

Posted on: Mar 21, 2021 10:27AM

Dottybird wrote:

I am BRCA 2+, had the double mastectomy, chemo, am on tamox, and have been doing the CA-125 and ultrasounds to monitor my ovaries. The tamox is causing a thickened lining and doctor wants me to change to AIs and REALLY REALLY wants me to get my ovaries removed.

I have not heard any good things about it, especially under 45, so I thought I would ask.

Thanks and good luck on your journey!

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Mar 21, 2021 01:19PM kathabus wrote:

Hi-- I am probably a minority, but I got my ovaries removed and I would do it again. I sit here 8 months later and I feel great.

This is definitely not everyone's experience. I had a hard time finding positive outcomes. I was terrified. I cried a lot. I thought my life was going to fall apart. Are things a little drier? Uh, yeah. But that's been it. In fact, I feel more even keeled. I sleep well. Are things going to be awful in 5 years? Maybe. I have no idea. But no one escapes menopause and I try to take it day by day.

I have exercised 30 min everyday since September and that has been a great thing for me....and I wonder if that helps with everything.

With an estrogen fed cancer, I think I mentally just wanted my estrogen making machines out. Especially being premenopausal. That's the way I looked at it. I also had a hysterectomy with it. It's been a new chapter, and I had good results with it!

My MO wanted me to start with the shots before the oopherectomy. I didn't go that route, but that may be a good way to test the waters before you do the surgery....

Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Surgery 3/24/2020 Lumpectomy (Right); Lymph node removal (Right): Sentinel Surgery 5/1/2020 Radiation Therapy 5/14/2020 Whole breast: Breast, Lymph nodes, Chest wall Radiation Therapy 5/15/2020 Whole breast, Radiation boost: Right breast, Chest wall, Lymph nodes Hormonal Therapy 7/1/2020 Femara (letrozole) Surgery 7/20/2020 Hormonal Therapy 8/20/2020 Femara (letrozole)
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Mar 23, 2021 08:47AM Dottybird wrote:

Thank you for your response Kathabus and glad to hear things are going well for you! I think we tend to post about the bad stuff so I was hoping someone, somewhere in the galaxy 🙂, had a positive experience.

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Mar 23, 2021 11:52AM simonerc wrote:

Hi Dottybird!

I have a pathogenic mutation of my ATM gene. I was diagnosed with breast cancer at age 51. Before that, I had been on birth control, and then hormone replacement until my diagnosis. So, I never “experienced” menopause. After diagnosis, I stopped hormone replacement and began Aromatase Inhibitors, Arimidex.

After just over a year on AI’s, I had total hysterectomy and BSO (uterus, cervix, ovaries, tubes). I am older than you, but I did not experience menopause, due to HRT, until my diagnosis at age 51. With the AI’s I had joint pain which is much relieved by taking Teva generic, or better yet Brand name Arimidex. I get some warm flashes. I initially had a harder time sleeping but that has gone away. I never gained weight. I exercise frequently and eat a healthy diet. I am in good shape and fit. I do have a bit of brain fog. Used to be superwoman and a fabulous multitasker. Now I have to be super organized and methodical. Since my hysterectomy and BSO, things have not changed much from being on AI’s. I often wonder if any aches, pains, fatigue are age related, just my body (had some arthritis and injuries prior), post Covid, AI’s, loss of ovaries... That said, I do everything I want to do. A personal lubricant will be your friend. But intimacy with my husband is still great.

I agree with Kathabus. I feel pretty darn good and am happy to be rid of ovaries lingering estrogen and also happy to have less body parts cancer can target. My sister’s “prophylactic” surgery found uterinecancer. We share the same mutation. I feel the surgery was a good trade!

I hope you come to a decision for yourself that you feel good about! Keep us posted.

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy
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Mar 23, 2021 01:20PM 2019whatayear wrote:

Im on the same page as Kathabus. I'm glad I had my ovaries and tubes out (BRCA2) I have been lucky in that b/4 when I had working ovaries I had lots of bloating and headaches and mood swings. I didn't realize they were so hormone related until I lost the estrogen. So everyone is different. I was 49. has BSO surgery right after radiation. was in chemoapause after 2nd A/C treatment. I exercise daily to help avoid any AI stiffness and do not miss estrogen at all (except for sex, def. need lots more lube)

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Mar 23, 2021 02:49PM Peppin wrote:

I had breast cancer in my early 40s and removed my ovaries a few years after, some 5 years ago or so. I feel fine. Dry down there - yes. But other than that I feel absolutely fine. I don't miss my periods either. :) Well actually the chemo had already effected those. I had been terrified that I would suffer mental fog, but I am as sharp as ever and physically fit till now. I had a relative who had survived breast and died of ovarian. Was not going to sit and wait and let it happen to me. Off they went! Haven't looked back.

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Apr 24, 2021 05:44PM LaurainNY wrote:

I am 55, had ovaries removed at around 42 years, shortly after testing showed BRCA2 gene. I was not planning any more child bearing but was very nervous about it all, felt like it was the beginning of "old age." I expected it would reduce the risk of breast cancer, but I was diagnosed with BC three years later, but at least have peace of mind of a low risk of ovarian cancer.

The downsides are the loss of libido and serious dryness that greatly interferes with intimacy. That has been the most major change. But other than that, there have been no side effects in the past 13 or so years. I feel as energetic as I did 13 years ago, exercise regularly. It's hard to know if life changes are attributed to lack of estrogen or just to age - like a little loss of skin elasticity, being forgetful sometimes, a little weight gain.

Dx 12/20/2010, IDC, Left, Stage IIB, 7/11 nodes, ER+, HER2- Surgery 1/9/2011 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/28/2011 Radiation Therapy
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Apr 26, 2021 08:01PM - edited Apr 26, 2021 08:03PM by farmerlucy

I did it around 54. I immediately had tsunami hot flashes. That was seven years ago. Still have them. I had a scary family history, ALH/ADH. Invasive was found in the preventive mx despite blue ribbon screening. I would not do the ooph again. My gynonc said the chances of ovarian cancer if one is Brca neg islike 2%. I was just so afraid back then. This mama needs her estrogen.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/11/2012 Lymph node removal Surgery 7/22/2012 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015
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Apr 26, 2021 10:07PM harley07 wrote:

When I was diagnosed with IDC last November, Genetic testing indicated a RAD51D mutation which increases my risk of ovarian cancer by 10-12% and is believed to be associated with increased breast cancer risk. I was kind of surprised, but given that my mom, her sister and their aunt all had BC, maybe I shouldn't have been. It seems much less is known about the RAD51D mutation than BRCA 1/2. The genetic counselor urged me to consider a prophylactic BSO. The NCCN guidelines suggest considering this at ~45-50 yrs of age. As I'm 63, I'm wondering if it's too late to consider - perhaps at my age, the actual risk reduction is low. Or perhaps a 10-12% risk isn't serious enough to warrant a major surgery.

My DH Is opposed to a BSO because he knows I don't like doctors and am dissatisfied with how some aspects of my BC were handled. He believes additional surgery will lead to additional problems as I developed lymphedema after my lumpectomy and radiation and still have an unresolved seroma in my armpit on the cancer side. I hadn't given my ovaries much thought until recently when I completed surgery and radiation and started on anastrozole. Now I'm trying to decide if this warrants a consultation with a gynecologic oncologist or if at my age it really is not necessary. I'm a bit more freaked out by the ovarian cancer right now as a dear friend passed away from OC yesterday and we are heartbroken.

Any thoughts, insights, links to info is appreciated.

RAD51D mutation Surgery 11/5/2020 Lumpectomy; Lumpectomy (Right) Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Apr 27, 2021 08:30AM farmerlucy wrote:

Harley - I would think at 63 the ooph would not be that impacting. Also there is some research out there regarding removing just the Fallopian tubes since it is thought most OC starts there. I think that is generally a recommendation for premenopausal woman as a stop gap before ooph. Surgery wise the ooph was nothing. I did it outpatient and I was back to my normal life the next day. Easy peasey. Might be worth it for peace of mind.

A few years after the ooph I had post meno bleeding from tamoxifen use so I had a complete hyster. Now I don’t even see a gyn anymore. I also have my PCP follow me for the BC stuff, so now I only see one doctor once a year.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/11/2012 Lymph node removal Surgery 7/22/2012 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015
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Apr 27, 2021 11:57AM harley07 wrote:

@farmerlucy - thanks for the info on the ooph. It’s good to know it was an’ easy’ surgery. The purpose ofthe ooph is to reduce my risk of ovarian cancer for which I am high risk, more so than a BC recurrence

RAD51D mutation Surgery 11/5/2020 Lumpectomy; Lumpectomy (Right) Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)

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