How many BRCA 2 ladies had ooph after BC?

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 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  

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.

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!

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.

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!

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

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

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!

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

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!

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

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

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

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.