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Topic: Preventative Ovary Removal - Pre-menopause

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Apr 25, 2020 08:50PM

inezzy22 wrote:

I am almost at my 5 year mark of surging TNBC, praise god! I am now 39 years old and oncologist recommends I remove my 1 remaining ovary. Due to being BRCA 1 he has stated hormone replacement is NOT an option for me. This has me afraid and concerned of so many things personally. I am married, I am invested in work and the side effects I feel will truly interfere with day to day life with premenopause. Has anyone else gone through with removing both ovaries under the age 40?

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May 1, 2020 06:03PM BCat40 wrote:

Hi, I am sorry you are going through this difficult decision. I don't have any personal input, but thought you might get more responses if you post in the positive genetic results forum. https://community.breastcancer.org/forum/112

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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May 1, 2020 10:16PM SoulShine1969 wrote:

I had prophylactic salpingo oophorectomy at 41 due to BRCA1. Early menopause was annoying. I ended up going on hormone replacement with the blessing of my MO. I know that their is conflicting thoughts on is it safe or not, but all my doctors agreed that because my cancer was TN hormones is alright. Hope this helps.

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/30/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/4/2015 Breast, Lymph nodes, Chest wall
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May 1, 2020 10:34PM inezzy22 wrote:

Thank you so much! I just posted Heart

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May 1, 2020 10:38PM inezzy22 wrote:

@SoulShine1969 - My Gyno and I both feel I should have the replacement because I had TN and he will not prescribe based on my Oncologist giving the big NO! I’m very close to canceling surgery because I just don’t think I can handle it.

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May 2, 2020 08:48AM SoulShine1969 wrote:

inezzy22-

Please don’t cancel your surgery. Salpingo Oophorectomy is the best preventive measure for OC. Also, you didn’t mention fallopian tube removal(Salpingo part of SO) it is important to have your Fallopian tubes removed as well.

As to your MO not wanting you to take HR; if you want it you should insist that you get it. Hands down you have to stand up for yourself and be heard. And if your MO won’t listen and dismisses you, that is concerning. I’ve been blessed with wonderful doctors, but I actually changed Plastic Surgeons because my former PS dismissed my concerns regarding Nipple Sparing MX. He was a great surgeon but he didn’t listen to me and consistently dismissed me. Some doctors just won’t listen.

I wish you all the best with this. If you have any questions or just want to vent, I’m here for you.

Rebecca

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/30/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/4/2015 Breast, Lymph nodes, Chest wall
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May 2, 2020 09:08AM - edited May 2, 2020 09:08AM by MelissaDallas

Perimenopause was annoying, but I had ovarian cancer and I promise you it was nothing compared to having five liters of ascites drawn out of my belly every couple of days because I was nine-months-pregnant size in my belly, being unable to eat (my records indicated I had malnutrition), sleep or breathe, getting a PE and having to do Lovenox shots for six months in my belly and having to have a partial omentectomy along with my hysterectomy and oophorectomy. I was LUCKY because I had a low malignant potentialcancer, but I almost died anyway

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 2, 2020 09:18AM SoulShine1969 wrote:

MelissaDallas-

Your experience sounds horrible! You’re right, peri menopause/menopause don’t come close to what you went through with Ovarian Cancer. I hope all your treatments are behind you and you are doing well now.

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/30/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/4/2015 Breast, Lymph nodes, Chest wall
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May 2, 2020 09:36AM MelissaDallas wrote:

Soulshine, aside from surgery I didn’t have to have any treatments, so I was very, very lucky. It could be infinitely worse. No symptoms at all from the time I was showing my flat stomach to a friend at work in September when I had been on a diet until deathly ill in December and looking like I was nine months pregnant

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 2, 2020 02:10PM inezzy22 wrote:

SoulShine1969 -

I actually had my Fallopian tubes removed 3 years ago with 1 ovary. While removing the tubes they found that one of my ovaries was covered in cyst. Pathology thankfully came back negative. So I have been operating with 1 ovary. The oncologist claims I am much higher risk of recurrence if I do take the hormones which is why he saying no. I understand why he saying no especially if it's preventative. I just can't imagine going through menopause so young. Gyno says menopause will hit immediately after surgery without hormones. I live a very active life. Maybe I want the hormones for selfish reasons for someone my age including for intimacy. I travel for work, public speaking, etc. Can you imagine a hot flash? How embarrassing. I did go through Pre-menopause with Chemo and that alone was terrible. Thank you so much for replying to my post. How has your health been?

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May 2, 2020 02:13PM inezzy22 wrote:

MelissaDallas -

I am truly sorry you went through all of that. Sounds awful :( How are you doing now? Did you remove both ovaries? Did you go through Pre-Menoupaise or were you in full blown menopause? Am I asking that right? Sorry for all the questions.

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May 2, 2020 02:25PM SoulShine1969 wrote:

My health is pretty good. It feels good to have passed the 5 year mark post TNBC. No recurrences, thank God!

I'm still trying to wrap my head around the fact that your Oncologist doesn't want you to take HR, even though the cancer you had wasn't hormone receptive. I must not be getting it. I just hate the idea of you suffering so many side effects beyond hot flashes such as increased risk of osteoporosis and heart disease. Like I said, their must be something I don't understand.

I feel for you with this dilemma.

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/30/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/4/2015 Breast, Lymph nodes, Chest wall
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May 2, 2020 03:44PM MelissaDallas wrote:

Everything out. Uterus, tubes, both ovaries, appendectomy and partial omentectomy all at once. I had been in perimenopause for a while, but was almost donebefore the surgery.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.

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