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Topic: Brca-2 positive :(

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Aug 19, 2020 01:13PM - edited Aug 19, 2020 02:26PM by July152020

July152020 wrote:

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.


Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020
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Aug 19, 2020 01:20PM MelissaDallas wrote:

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

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 19, 2020 01:27PM July152020 wrote:

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

Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020
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Aug 19, 2020 02:00PM Beesie wrote:

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...





“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 19, 2020 02:01PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 19, 2020 02:23PM - edited Aug 19, 2020 03:20PM by 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

Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020
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Aug 19, 2020 03:16PM Beesie wrote:

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.




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 19, 2020 03:23PM July152020 wrote:

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.

Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020
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Aug 19, 2020 03:49PM Beesie wrote:

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

Everything else so far, yup, very interconnected. Smile

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 20, 2020 08:36PM 2019whatayear wrote:

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

IDC 2 cm micromets 1 node 8 more removed. BMX 6/24, A/C then Taxol 7/25, 25 rads 1/6/2020 No reconstruction BRCA2 - BSO 2/19 all clear/ starting AI on 3/1/2020
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Aug 20, 2020 09:04PM July152020 wrote:

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.


Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020
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Aug 20, 2020 09:21PM 2019whatayear wrote:

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.

IDC 2 cm micromets 1 node 8 more removed. BMX 6/24, A/C then Taxol 7/25, 25 rads 1/6/2020 No reconstruction BRCA2 - BSO 2/19 all clear/ starting AI on 3/1/2020
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Aug 20, 2020 10:03PM July152020 wrote:

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.

Brca-2+; Dx 7/15/2020 at age 43. er+80% pr+40% Her2-, IDC 1.7cm grade 3, DCIS 0.6cm grade3 , 2/15 nodes (0.6cm) started ac+t on 9/17/2020

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