BRCA2 positive

radiation_cinderella

Hi everyone,

I'm currently in remission, stage IV bone mets, BRCA2 positive patient. I should be doing bilateral salpingo-oophorectomy in the next few months and I want to check if there's anyone here who did it? If yes, how did it go? How did you feel afterwards?

Thanks!

myyoga

I accidentally stumbled on your post and wonder how you are doing now? I had BSO in 2023 and found it an easy surgery. It was quick and the recovery was within 2 weeks. I didn’t experience any side effects from it, probably because I was already 60 at that time. Hope you do well.

radiation_cinderella

Thanks @myyoga for responding 🙏🏽 I had my surgery May 6th so I’m on my second week now and feel better than last week. The doctor said internal healing and back to normal should take 3-4 weeks. I mostly have abdominal discomfort and difficulty breathing deep breaths (which causes pain under my left-side rib cage), but nothing too bad.

myyoga

@radiation_cinderella

So glad your surgery went well. I think 3-4 weeks is a good estimate for recovery though because you’re young, it’ll heal faster. I hope the pain is gone by now. My sister has BSO last year and she also complained about the pain near the rib cage. But she’s good now.

This website is not set up that all the new posts are easily seen by the members. That’s why your post was not answered. I was searching for people with brca2 mutation so I came across your post. I’m a brca2 myself. I was dx with IDC 3 years ago. I had lumpectomy and radiation originally but decided to do bilateral mastectomy recently. Too stressful to go through MRI every year! My recovery from mastectomy was a little tough even though I went flat. Did you have BMX?
Would you mind telling me how your bone met was detected?

radiation_cinderella

@myyoga

Thank you, I'm glad your sister felt the same and got better…I'm looking forward to feeling better soon <3

I was first diagnosed with stage 2 july 2020, did a lumpectomy + chemo + radio + hormonal. I had severe back pain December 2023, which led me to investigate and find the bone metastasis, and my new oncologist asked me if I want to do the BRCA test and I said yes of course and found out I was BRCA2 +ve. We spoke about BMX but I'm not excited about it to be honest. I heard it's not live removing your ovaries and you can't have ovarian cancer, some people get it back in their breasts despite BMX because there's always breast tissue left…I am also tired of surgeries and recovering from them, I had 4 the past 5 years (one unrelated to my diagnosis)! If I had to remove one though for any reason, I would remove both and go flat too, but I know the recovery is also pretty tough, how long did it take you to recover if I may ask?

myyoga

@radiation_cinderella

Thank you for answering my question. I’m taking letrozole and have bone pain occasionally. I can’t tell if it’s bone met or just a side effect of medication.

You’re right about local recurrence despite BMX. It does not remove all breast tissues. BSO, especially at young age like you is more effective in preventing breast cancer and ovarian cancer. Both my mom and my aunt had BSO and hysterectomy in late 30s for some other issues. My mom died at 71 no breast cancer. My aunt was dx at 74. She’s 10 years out and counting.

My BMX recovery is little tough probably because my surgeon was not so great! My sister had better surgeon and she didn’t feel pain. She only took one pill of the prescribed pain med then decided to skip the rest because she didn’t feel the pain. She was up the next day, moving around, even trying to clean the house. We had to stop her from doing house work!

My surgeon wasn’t so great! She didn’t know how to do nerve blocking so I woke up in pain. The nurse gave me high dose of pain med through IV and the pain quickly subsided. I was discharged on the same day. I only took pain med at night for a few days. But I had very thick hematoma which took a month to get better. Now after 3 months, it’s gone. Other people on Mayo Clinic connect don’t seem to have hard time recovering from it, but lots of people describe feeling like wearing Iron bras. You might want to check out that website. There are mentors and moderators who are cancer survivors themselves. Post your question there and you will get some responses the next day.

There is no urgency to have BMX especially when you already completed all treatment. It’s just a preventative measure and there’s no guarantee it won’t come back. Too many surgeries are not good for the body. You do when you’re ready or for some other reasons. I’m just don’t like MRI. I’m claustrophobic that’s why. I assume your are on surveillance. So if it recurs or happens to the other breast, it will be detected early.

Let me know if you have more questions. I pray for your peace of mind and a speedy recovery. Hugs.

radiation_cinderella

I'm so sorry you didn't have a good surgeon :-/ So glad the hematoma got better now <3

About bone pain, it can also occur because of lack of vitamin D and calcuim, and as a side effect for hormonal treatment causing eventually osteoporosis - which happened to me 1 year after starting my MBC treatment. It might be in your case any of those factors. Do you do any regular lab work or PET/scan? I think your oncologist can best advise on the bone pain.

Mine was so painful that I fainted, because the largest spot was around my lumbar spine. The rest were minor, scattered in different bone locations…but unfortunately, many discover bone mets when they break a bone :(

I'll be on treatment for ever, I guess. I do PET/CT every 6 months, and in the middle, I do one mamogram and another MRI with contrast. So every 3 months I have a scan basically to catch any progression.

Thank you for your prayers and hugs <3 <3 <3 <3 I hope your bone pain gets better and it turns out to be just minerals/vitamins deficiency <3

myyoga

@radiation_cinderella

How is your pain now? Is it gone yet? I talked to my sister yesterday and she described the pain as “painful to get up and breath” . She said the surgeon performed robotic laparoscopy. He wasn’t very skillful. She said it took a good 4 weeks to feel normal again. I hope you feel better now. 🤗

That must have been a terrible pain that made you faint! <3🤗 . I’m so glad you’re in remission and have a schedule of tests to monitor the conditions <3

My onco doesn’t order any other test but normal blood works to monitor kidney, liver and all that junk. She seems to think my bone pain is a side effect of Letrozole. I just try to manage by walking and it seems to go away after 15 mins of walking. People talk about ki-67 test. I don’t have that. They don’t test for circulating tumor. But as brca2 carrier, I had MRI and mammogram yearly. Now after mastectomy, there will be more MRI or mammogram. Anyhow we got to put it on the back burner and go live our lives.

I think you’re right about vit D and calcium. Aromatase inhibitors cause osteoporosis. I’m taking vit D and a little it of vit K. I’m now deep in osteopenia. Can’t fight the drug side effects, but as long as I can tolerate them, I take them.

Please keep in touch to let me know how you’re doing. <3🤗

radiation_cinderella

@myyoga thank you for asking your sister <3 I'm feeling better now and the pain is less. My surgeon also told me it takes 4 weeks to fully recover, and that's when I'm allowed to go back to working out or lifting things at home etc. So glad that this surgery is behind my back now.

My joint pain also reduces with sports, walking or aerobics or just stretching at home. Movement does really help and I'm happy you're noticing a difference after just 15minutes of walking <3 <3

I wish you a beautiful weekend, thank you for checking in on me <3