How many BRCA 2 ladies had ooph after BC?
Hey ladies,
Just found out that I am BRCA 2 (two years after diagnosis.) I've had chemo, BMX, radiation, Herceptin, and am currently on Tamox. I am 39, single, no kids. I REALLY wanted to have kids, but that isn't looking very likely now. Should I have an ooph? I'm highly hormone positive.
Comments
-
i am brca1 positive and due to 2 other of my sisters also with bc snd extremely high family history of brca1 i had an ooph when i was found to have it my first bc was hormone positive but my new and now bc is triple neg and very common to people with brca positive bug especialy common to brca1
-
Hi sweetbean, I'm BRCA2+ and had an ooph at the same time as my mastectomy. My doctors recommended it, plus I wanted to do absolutely everything in my power to prevent recurrence. I'm happy with my decision. It meant surgical menopause at 37 and no chance of getting pregnant (which I had been putting off for years), but my survival is the most important thing to me.
I always had mixed feelings about having kids so at this point, I'm just relieved I never passed down the mutation to a child. But you really wanted kids, and I'm sorry you have to experience this loss. Whichever decision you make, just follow your gut. I wish you the best.
-
I am positive as well. I had my right breast removed 11/12 before finding out. They want to proceed with chemo and then remove the left. I regret not doing the BMX now. Now I have to talk about the ooph - I am thinking I will do that the sametime as lefty is removed.
-
I am BRCA 2 and we just found out my mom is also, I am 28, mom is 60. I have had stage 3 BC and mom has had none. We both have different plans. I had a UMX so I could start chemo faster and will get the other side MXed at recon. The genetic counsellors have recommended waiting til 35 for me to get the OOPH because "usually" ovarian cancer affects BRCA 2 at a later age. Now mom, who has never had BC is getting an OOPH in January because ovarian cancer with screenings is SOO much harder to catch. She is going into high risk management for her boobs. There are a lot of different paths to take and a lot of recs are based on age. One thing you could do is find do low hormone harvesting for egg freezing. Earlier this year it was made officially "non experiental". Also, IVF would give you the ability to test the eggs for BRCA and avoid passing the gene onto the kidlets if thats the path you choose. I say low hormone because via a study earlier this year high hormone is linked to BC. Also the LIVESTRONG organization helps with fertility treatments for cancer patients. if you go to a participating center there is a 25% discount on treatment and Livestrong provies one round of drugs for free
Big hugs. Its not fun being BRCA pos, but its comforting to know I will always be under high risk monitoring, they never really let you go
-
Thanks, everyone. I did the egg harvesting (had to pay out of pocket as it was two years ago..ugh! glad insurance covers it now!) I'm seeing a genetic counselor and a medical oncologist at Dana Farber at the end of December and my oncologist in the middle of December. We'll see what they say. I may ask to have them give me a shot of Lupron to give me time to think. This blows. I wanted to be a mom so badly.
-
fyi...my Surgeon that did my ooph, who is also an Oncologist and Cancer Researcher (she studies pathways involved with BRCA) told me that ovarian cancer typically occurs 9 years after BC, if BC occurs first, for BRCA2+. At first she said "average of 9 years" and later I said "average" would not make sense as 9 could be the average of zero and 18...I think she meant to say "mode"....most commonly occurs 9 years later. I'm way past my child-bearing years, but was concerned about waiting for my ooph after going through all of the BC treatments.
-
Sweetbean, I'm not sure, but think most ovarian cancers occur after age 50s and into 60s. I would research that before rushing to do this at age 39. If you're still fertile after the chemo, then you should have several years to wait before having to think about removing ovaries. Being highly hormone positive shouldn't affect the development of ovarian cancer. You should discuss all this with a genetic counselor.
-
I was recently diagnosed with IDC and am brca2 positive. I met with an oncologist who studies and treats brca positive women. She said that I could potentially do my mx, reconstruction and oopherectomy all at the same time. I am done having kids and honestly have no attachment to my ovaries. I am going to go into early menopause no matter how I cut it so from my perspective I think lets just get on with it. After speaking with my surgeon's nurse she said that my dr would not perform the ooph at the same time. I haven't spoken with her yet to find out what her concerns are but I am just wondering if anyone else has had it all done at the same time and if not what and when did you do it?
I am ready to move on with this journey!
Thanks! -
jsrose - I've only seen one poster on BCO (to my memory) that had BMX, reconstruction and ooph at same surgery. I know I asked for that from my BS and she sort of umm'ed and said she thought the ooph surgeon would need the DaVinci and a different operating room than her, so not possible, but my PS said "no." The best I could get out of them was that it was too much surgery at once. My eventual ooph was not done with the DaVinci as I needed reconstruction at the same time. As it was, the BMX and recon took 5 hours. (I had my ooph with my chemo port removal and TE exchange.) While the ooph part seemed minimal (including how I felt afterward) and I think only took 45 minutes (done first), that surgery ended up being 5 hours total and set me back a month from chemo recovery, fatigue wise.
I've written this on other posts, but I was concerned about having to wait for the ooph until after bmx surgery and chemo, considering my brca2+ status. My ooph surgeon is a brca/ovarian cancer researcher and she told me that with brca2+, ovarian cancer generally would happen usually 9 years later, after BC, if it happenned.
-
Kam170.
Thanks for both of you posts. My surgery is scheduled for March 6. I will have bilateral mx with te. I have basically been told exactly why you said. In terms of it being too much surgery but I think the difficulty is really about timing bt the surgeons. One ps explained to me that would be too difficult to predict when the gym/onc would need to come to do the ooph since its only a 45 min procedure.
I am using dr Susan Domcheck as my oncologist at the basser research center which is a research diagnosis and treatment center for brca+ women. I know she works closely with Dana farber so I will definitely bring up he chemo conversation once I get thru surgery. I am hoping to do my ooph at my exchange surgery but am not sure if the gyn onc operates at the same hospital as my ps.
Thanks again. -
jsrose - sounds like you have the cream of the crop for brca doctors. Please keep in touch. I'm very interested in what treatments they propose for you as we have a similar dx.
-
Kam170-
I saw a gyn onc today and he doesn't see why we can't do them all together!?! I am so confused by all of this. He said he will talk to my BS about it but as of now my surgery is scheduled for only mx and immediate recon with TE. I am so exhausted by all of this that I honestly don't care anymore. The only down side is that the gyn onc here at penn is leaving in June so I will have to start over with someone else. It seems there are always bumps in the road!
Thanks!
-
jsrose - I seem to remember getting hazy answers from different doctors, at first, about doing ooph with BMX...like, "I don't know, depends on the DaVinci." As I said, that was the BS...the PS just emphatically said "no." Like don't even bother asking that question. You'd think they'd have enough of us brca BC patients to know the drill. I do know that I relied heavily on my stomach muscles to get up and out of my hospital bed after the BMX (do situps now! so you don't get too sore), so not sure if the ooph surgery would have affected that (since they don't cut the muscle). Part of it is just being under anesthesia an extra 45 minutes, to be sure, and I wouldn't take that too lightly. The BMX and Reconstruction to TE's, as is, took 5 hours.
-
kam 170-
thanks for the good info. i have a hard time keeping up with all of these posts too! today was my last day of work so now i have time to prepare. i've pretty much given up on figuring out how to make this ooph happen at the same time. if by some miracle the drs can figure it out than great! if not, i dont have the energy to worry about something else!
at what point did you do your ooph? i cant figure out when to do it but partly bc i don't know if i need chemo or not so it's all too hard to plan. the gyn onc i met with yesterday is leaving by june so i would have to start over with someone new. not the end of the world for sure and i'm sure i can find another good dr at upenn.
thanks,
jsrose -
I did my ooph after chemo. I had to wait 3 weeks after chemo, no earlier. My BMX/immediate recon with TEs (5 hours) was 1/20, chemo from 2/28 to 8/1 (I had the DD AC 4x, DD T 4x, then 6 weeks of Carboplatin for the brca, explaining the lengthy period). My TE Exchange, chemo port removal and ooph done on 8/30 (5 hours). I was menopausal though. I'm not sure if they do things differently for women with ER+ pre-menopausal. Perhaps they take drugs to supress the ovaries in the interim? If you are having chemo, ergo a port removal and/or reconstruction surgery, the ooph is just added on. I suppose if you managed to avoid both, then you might want it all done at once, with your BMX? I won't lie, I was anxious about waiting that full 9 months for the ooph from finding out I was brca, but they did do a thorough job of checking for ovarian cancer as soon as they knew my brca status (pet/ct scan, transvaginal US regular US, CA-125, etc.).
-
Kam170-
Thanks so much. By some miracle I got a call today from my oncologists office and then right after my bs called and they scheduled me all for one day! So I will be having everything all together! Yay!! Somehow in my warped world of cancer this has been the best news I have received since my diagnoses! Now I can just focus in getting ready and preparing my family. I feel that I am in good hands and I'm trusting that all will work out in the end!!
Jsrose -
jsrose - you have great doctors, so I wouldn't worry a bit (doesn't sound like you are). Honestly, I would have preferred to get those cancermakers out of me sooner rather than later and I can tell you are much happier about this too. Congratulations...sometimes we get what we want.
What is your surgery date?
-
Hi ladies! I had first MX in 2002 followed by chemo and hormonals. Just found out in 2012 that I am BRCA2+!!! I am 56 and grandmother of 7 so it was an easy decision for me to get BSO and Hysterectomy in Oct 2012. Had it done by DaVinci and it took 4 hours but the recovery was absolutely great! Very little discomfort - no pain - and very little vaginal bleeding. I took it easy for 6 weeks and by then felt as good as before. The GYN surgeon said he would gladly coordinate with the Breast surgeon in the DaVinci operating suite. This was at U of Kentucky. I opted to wait for the MX just to see how the recovery would be with the BSO. If I had it to do again I think I could have done them both at the same time as it would just be one recovery period not two. I would just be a little concerned about the extra time under anesthesia. As it stands I get my last MX on March 6th - same day as jrose surgery. Next WEEK!!! Wishing you both the best jsrose and Kam170!
-
Forgot to say the reason they finally gave me genetic testing was because a new nurse practitioner asked me about my family cancer history. My Mom is an ovarian cancer survivor now for over 11 years. She is now 90! I was so glad to find out about the BRCA2. Also found out my daughter is negative. Waiting on my son to be tested. Mom just got tested and we are waiting for her results so we can let cousins know if they need to get tested. Information is power!
-
Hi-
It's getting close to my surgery and I am now having my ooph as well on the same day! I was just wondering if there is anyone else out there who is ER/PR+ and her 2 neg and also BRCA 2 with ooph after mastectomy. i am aware that i will be going into surgical menopause but also since I am er/pr+ i know that i can't get hormone replacement therapy. what else can they give me to help with menopause? anyone else been down this road?
thanks,
jsrose -
Kam170-
sorry i never responded to your last post. my surgery date is set for March 6th. 8 days!!!! I am so nervous but ready to get on with this journey. As I mentioned previously, I will be having bilat mastectomy with immediate recon and bso. I am hoping that all will go well and now just preparing my family and house for the big day!
thanks for keeping interested in my status! i have lost track of the days!
jsrose -
Hi jsrose14, I had bilateral mastectomy/ooph a year ago (BRCA2+) at the same time, and I still have hot flashes. I take Arimidex to prevent my testosterone from being converted to estrogen (didn't even know the body did that until BC), so I expected to have them for a long time. There are a couple of antidepressants that happen to have the side effect of helping with hot flashes. I can't remember the names of them off the top of my head, but you could ask your doctor if one of these is an option for you if you find the hot flashes unbearable. Although surgery technically kicked me into menopause, I did chemo first, and had already been dealing with menopause symtomps from that. For me, there was no real difference between chemo and surgically induced. But the Arimidex increased the frequency of hot flashes for me, at least at first. Now I feel like I'm in a good place and have opted to hold off on the antidepressants because I don't think I want to deal with the side effects from one more medication. Hope this helps!
-
Hi jsrose,
I just heard from a different forum that you had your BMX/ooph surgery recently. Apparently, we have the same Doc..? I am scheduled for my PBMX with TE recon on May 15th with Drs Sataloff and Bucky. From what I have heard they are a great team.
Hoping all has gone well. My best friend of 40 years is a 7-year survivor. I believe she was a stage I grade 3 ER/PR+ with 0 nodes. She went with the lumpectomy (they had to go back a second time to get clear margins) and had an ooph at the same time. She did chemo, rads and tamoxifen. Today she is totally CA free and plans to be there for my trip down this road.
Best wishes for a great recovery!
-
Auntiems3
Yes we do have the same docs. Not sure if you are having an ooph too but dr Randall did that for me and he is amazing! He works with both quite frequently and quite frankly I think they are the trifecta of docs! Sadly dr Randall is leaving this summer. Are you brca +? I have also met with dr Domchek who is a brca expert oncologist. I meet with her on Wednesday and hope to move forward with my tx plan although I am pretty scared too!
Thanks so much for your note. Surgery went well but recovery is not easy. Every day is good and bad with its ups and downs mostly pain management. I am totally please with how I look already in terms of the surgery so you are in good hands! Good luck and keep in touch if you like!
Jrose -
jsrose - are they doing an oncotype test on you? I assume you are close to getting results, if so. Glad your surgeries worked out and you were able to get the ooph at the same time.
zenpatrol - in our family, no ovarian, but BC arrives in our 50's peri to post-menopause. Looks like your family has later in life occurances too. Who would have thought brca with your mother getting ovarian at such an advanced age?!!
-
Kam170-
Yes my onco test should be back by wed when I go to dr Domchek.
I have no idea what numbers are relevant for cut offs and chemo decisions but based on my initial path after surgery my tumor was upgraded to a grade 3. Also feel grateful that I made the choice for bmx bc they found lcis cells in my right breast.
Thanks for asking!
Jsrose -
I am also grade 3 0/0 nodes 1.4 cm (I don't know the size of your lesion though). I didn't have any dcis or lcis though. It think with brca+, a BMX is a wise choice, though I understand some women choose to monitor.
I've read articles by Dr. Domchek, I believe. Have you seen my comments about Platins and brca cancers? I will be very curious to hear what this doctor Rx's, if you should have chemo.
-
Kam170
I think our situations are very similar. I didn't see a diagnoses for you but my tumor was 1.5 cm 0 nodes and grade 3 too. I don't think the lcis will factor in in any way but it just makes me feel that I for sure made the right choice. I have my appt tomorrow with dr Domchek so I will for sure let you know. She seems very in line with current studies even if they aren't "standard of care" yet and I have heard very willing to try it all. Thanks again for your note! Have you started tx? If so what do they have you doing? Also since I got my ovaries out I am not going to do tamoxifen since I am post menopausal now.
Jsrose -
Jsrose - I finished chemo on August 1, so over 6 months out. You might ask your oncologist if your luminal A or luminal B subtype. I am luminal B. Luminal A are more indolent tumors. btw, I did A/C dose dense, Taxol dose dense, then 6 weeks of Carboplatin, once a week. My best advice to you is to exercise through chemo. It will really help you fight the fatigue. Fatigue was the least of my complaints!
-
I am a little over 2 weeks post surgery for double masectomy with tissue expanders as well as bilateral tube and ovary removal, hysterectomy with the robotic Davinci. This was actually recommended by my surgeons. This was due to being BRCA2+. It was a 5 hour surgery.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team