Brca-2 positive :(

July152020

Hello ladies,

I had a lumpectomy 7 days ago as I didn't want to wait for my dna result back (I was also hoping since my mom is the only person who had BC, I might not carry the gene). Although I did learn know today that the result was out 6 days before my surgery. I am brca-2 positive.But I am also glad that at least I don't have a grade3 cancer in my body.

Anyways, now I am thinking of getting dmx and ovary removal. But should I just wait until all my treatments are done? I was told chemo soon after surgery is most effective so I don't really want to add another major surgery before chemo starts.

Of course I will also discuss with my surgeon but I'd like to see if anyone out there had similar experience and the pros and cons you had.

Thanks

Update:
I am 43 yr old. My sons are 4.5 and 6. My husband supports me in anyway although he'd prefer less invasive approach, so am I but I don't want to risk recurrence because of the brca-2 gene. My report said the 2nd breast cancer is 50% and ovarian cancer is 16%. I didn't know each person's stats might be different.
The mri I had did find something suspicious on my other breast but u/s didn't see anything, they wanted me to go back in 6mo for follow up.

Other updates:

1. my MO agreed to order an oncotype test for me.

2. I still need radiation even if I do mastectomy Because of positive nodes which I am fine with.

3. My 2nd opinion is scheduled on 9/11. My appointment with my MO is on 9/3 but I met him before and he gave me a plan which I don't think will change much. The plan was 4 times of something every two weeks then 12 week of something else every week after. Then 20 rads after. My RO said he will do breadth holding technique and avoid the damage to heart. And it’s going to to whole breast. All these plan was before my surgery so I will have follow up appointment again to finalize.

4. I do want reconstruction, I was thinking of getting DIEP, but now that I am having so many surgeries I might just get an implant. Any recommendations on saline or silicone?

5. Timing of surgery schedule will up to Kaiser if delaying chemo would reduce the effectiveness of the surgery, then I'd wait on the mastectomies. I am waiting for my MO to reply to my questions on timing.

I really was interested to know if anyone was in the similar boat as me. I know some people had lumpectomy the no clear margin then go in again for another lumpectomy or maybe a 3rd time for mastectomy. I am just wondering how they did it with the chemo and rads.

MelissaDallas

July, it would be helpful for folks to respond to you in a thoughtful and meaningful fashion if you would pick a thread and stick to it instead of continuing to start multiple new threads where nobody knows the entire picture

July152020

hi,

I am posting questions as I got new info and I believe each one can be answered separately.

I don’t see how getting 2nd opinion or my shoulder pain would affect the answer to this question.

Thanks

Beesie

July15, to MelissaDallas's point, you have raised questions about the recommended chemo regimen and how/where to get a second opinion on chemo. Based on your diagnosis you are eligible for Oncotype testing, which could also change the chemo recommendation; you said you were going to talk to your MO about Oncotype and/or Mammaprint testing - is there an update on that?

With those questions outstanding, or at least with the answers unclear to those of us who've been reading / responding to your posts, it is difficult to answer your question about what to do about the BRCA2+ result. If you want additional surgery, how long would it take to get it scheduled? Could it be done during the time that you are awaiting second opinions on chemo and the Oncotype/Mammaprint result? Or are you no longer waiting for second opinions? Are you certain about the BMX and ooph surgery and would you want to rush it or do you need more time to make a decision? Each BRCA2 variant is different; do you know the risk that you face for breast cancer and ovarian cancer from your specific mutation?

Another consideration. With positive nodes, would you require rads even if you have a BMX? Or could you avoid rads if you have the BMX? And with a BMX, would you want reconstruction? This impacts both timing of surgery and the potential impact of radiation.

Lots of questions back at you...

MinusTwo

July - most people on this site like to follow what's happening and not just answer separate questions. Like Melissa - I don't want to have to back track and find all your other threads. And yes, every piece of your health is part of the entire puzzle. So it would really help if you stick with one.

As for your question, only your docs can answer if the cancer is aggressive enough that you should have chemo before other surgeries - or after to mop up.

July152020

ok, I guess question styleis different. I updated my original post. I have so many questions everyday and I am trying to post them in right forum instead of lump them together

Beesie

July15, what do you mean by "your type is different?"

If you have a completely separate issue where the answers don't require previous knowledge about your diagnosis or where you are with decision-making or treatment, then starting a new thread is fine. For example, once you start chemo, if you have questions about a particular side effect, the Chemo forum is the best place for that because the only thing relevant to that question would be that you are having chemo (although the type of chemo and specific protocol might matter).

But at this point in the process, most of your questions seem to relate to "where do I go from here?" and all of that is highly interconnected. People who have been replying to your earlier questions know that there is more to what's going on, so to provide a meaningful answer, we have to do the work of combing through your previous posts to get more information. And people seeing just your new post and responding to it in isolation are likely to provide a reply that isn't feasible or relevant because they don't know the rest of what's going on. So for your benefit and to help those responding, starting off with all your questions in one thread is best. Then you end up with one thread that is all about you and that addresses each issue as it comes up.

July152020

I meant my question style or my thought process is different. Maybe I don’t see my questions being interrelated with each other.

Anyways, thanks for the clarification.

Beesie

The shoulder issue (I just saw that thread) probably not.

Everything else so far, yup, very interconnected.

2019whatayear

July- all of this, It's a lot to process.

I'll tell you my treatment plan so you see what happened to one BRCA 2 person.

My biopsy in May 2019 1.7 cm IDC - >95 ER + >90+ Pr HER- Ki-67 60 % mi2 I was 48 and the cancer was on the left side

I had genetic testing and found out I have one of the more common BRCA2 pathogenic mutations. Whoo Hooo.

So I had a BMX w/o reconstruction when I got my post surgery pathology I had only the one tumor which was 2.2x2.0x1.9 and I had microcmets in 1 SN and the other 8 nodes were clear. My onctotype came back as 31.

I had 4 rounds of A/C and 12 rounds of Taxol. I was able to work during all the chemo - just had to work 3 days a wk vrs 5. Then I had a month off and then I had 25 rounds of radiation (because of that doggone node with a wee bit of cancer)

Then 10 days after finishing radiation I had a bilateral salpingo-oophorectomy and they biopsied my uterine wall since they were in there.

That all came back clear and then I started on Letrozole 3/1 and will be on that for 10 years. My Medical Oncologist says I am high risk and so I also have lots of follow up. (that's like a good/bad do I want scans or not...yes and no)

Anyway that's what my plan was - Here is an article and I know I have seen other articles that say it is appropriate for you to have a lumpectomy and not a Masc. or a BMX. You don't need to go have another surgery ASAP. Assuming it's needed, you can go straight to the chemo and radiation and then can make a final decision on a BMX or not later on. Better to do the BSO vrs a BMX as far as another surgery goes for the very near future.

https://www.cancernetwork.com/view/lumpectomy-not-contraindicated-brca-linked-cancer

July152020

hi 2019,

my initial thought was get dmx now so I can get everything done sooner. Also there’s something suspicious on my “good” side and some other women said their good side had something undetectable growing which led me to make the decision to get dmx sooner than later.

But a thought just hit me now that since radiation will hurt my skin, maybe I should keep the breast for now and let it get damaged then later with dmx they will just get removed?

Maybe I will ask this question in the radiation group.

2019whatayear

Ask your BS to give you a referral to a Radiation Oncologist and go for a consult they can give you the best information. Also I think it is likely that the Medical Oncologist will say do chemo then any other surgeries.

So what happened for me and what happens for most BC people is before chemo you get a CT scan- chest/pelvis and abdomen and a full body bone scan- have these tests been scheduled for you. This is an important part of the puzzle.

July152020

yes, I had a full body pet scan and it’s clear. But mri showed something bluish on my right side, that’s why they did u/s on me, but couldn’t find anything, and said to follow up in 6 mo. The cancer on left side is bright red.

I emailed my doctors and Hopefully I will hear back from them soon.

I already met all my MO, RO, PS for potential treatment and will meet them again.

Dubhain

Because of my BRCA2 gene rest result, my BS highly recommend BMX as well as oophorectomy. I'm currently in chemotherapy through about mid-December and will have the BMX in January. Has anyone ever had both surgeries at the same time? I'm wondering about the recovery and healing time versus doing them separately.

July152020

My doctors recommended to get both done at the same time. I think they said 4 weeks total should be enough.

MinusTwo

Even if you are in great shape and nothing new found in your breasts during surgery, recovery from a BMX alone will likely take 3-4 weeks.

Some years ago I had a hysterectomy - uterus only. That was also 3-4 weeks recovery. If your oophorectomy will be laproscopic only, the recovery would be less.

But Oh My - I wouldn't want to tackle the top & the bottom halves of my body at the same time.

SimoneRC

Hi Dubhain,

I have a different mutation. I had my mastectomy and the next year I had a total hysterectomy, BSO and breast reconstruction in the same surgery. It was very doable for me to have the hysterectomy, BSO and reconstruction at the same time. The first 4 weeks or so, I did take it slowly.

If, you are just having the BSO and not a hysterectomy as well, I would think it would be a no brainer to do them together. Laparoscopic BSO is outpatient with very little pain on recovery, and almost no downtime.

My GYN Onc who is head of GYN Cancer center at major NCI Hospital asked me to chat with one of her patients who is BRCA+ and a physician. She was considering bilateral mastectomy (without reconstruction) and hysterectomy with BSO. She too was nervous about doing it all in one surgery as well. She wound up going for it and did just fine!

Personally, I would rather have less anesthesia by having fewer surgeries. Also one recovery vs 2. And again, if you are doing just BSO without hysterectomy, to me, I would not see any reason at all two do them separately.

Good luck and keep up posted!

CBK

I am Brca+ and and had an ooph separate from my BMX with reconstruction. The ooph surgery for me was nothing in terms of pain and recovery time. But be prepared if you aren’t in menopause for some real side effects from the loss of estrogen.

I had mine done laparoscopic and didn’t need any pain meds and was shopping the next day.

Wishing you the best in your decisions and much strength and healing !

ILOVERMONT

I am 6 days out from both at same time w/o reconstruction and doing just fine. Very little pain. Like some of you, I wanted to minimize anesthesia and down time. My ob/gyn recommended a total hysterectomy which I did so I don't have to worry about uterine cancer or a prolapse. No reconstruction to avoid further surgeries and/or complications. I am 60 and BRCA2+. 22 month thriver of IDC stage 1 Grade 3. My pathology just came back negative so I am completely in the clear now!! Best to all of you!

Dubhain

I just met with the gynecologist oncologist. He recommended the tubes ovaries and uterus be taken out vaginally. it would be easier and also reduce risk of additional cancers. Although my BCRA2 didn't list uterine or other cancer risks besides breast, ovarian and melanoma. I would do it at the same time as the BMX. He was concerned about the combined hours of the surgery and being under anesthesia for that long. He also said that I would have eight weeks downtime as far as lifting limitations regardless if I do the hysterectomy or just the oophorectomy. I haven't decided which way I'll go. I don't have enough paid time off to do them separately as far as down time .Anyone have thoughts or opinions?

He thinks I may have already gone through menopause based on what I told him about my history of hot flashes, etc.