BRAC1 +, LN +---What to do??

theredheadamy

Hi All,

1/14/09 I had a lumpectomy/SNB. In the OR they called the LN clean, so did not remove any more lymph nodes (they wanted to remove a second one, but it was wrapped in nerves and vessels and they declared it too dangerous to try to remove that one). Pathology report came back 48 hrs later as 7.5mm metastasis in a 1.3cm lymph node--over half filled with cancer.  Recommended full axillary node dissection and "while we are in there, clean up the lumpectomy site.  Margins are clear, but not comfortable (one side with only 1mm margin--rest are good.)"

In the meantime, my BRCA results returned (after 6 weeks and insurance issues  ) as positive for the BRCA1 mutation.  I'm adopted, so have NO family history.  I have been told we:

Can proceed as planned with ALND and reexcision, followed by chemo, radiation, and close monitoring  OR

Mastectomy on right side, chemo, +/- radiation depending on LN status OR

Bilateral mastectomy, though MRI showed one area of suspicion on opposite breast that was biopsied and was negative (fibroadenoma--I have many of them), chemo, +/- radiation depending on LN status

IF I choose mastectomy, they are pushing for immediate reconstruction, which seems like too much at this point.  I have more of a hate relationship than a love relationship with my breasts, but I feel like they think a woman of my age (39) would ONLY choose immediate reconstruction, so i am second guessing myself a bit.  

I am choosing to remove my ovaries, without one bit of doubt, remorse, fear, etc.  That is an absolute no-brainer for me.  I just am wondering if I am being too extreme if I remove everything and don't reconstruct right away.  

Thanks for listening (well, actually reading)  

Amy 

Mariebw

Hi Amy,  I'm Marie, aged 38 and was in the same position as you this time last year. BRAC 1 +, lymph node positive.I've done chemo and radiation too and had ovaries removed.It's hard to be so young dealing with this.

I had a bilateral mastectomy and to be honest the best decision I made was to go for immediate reconstruction. It may all seem too much at this point to bother  seeing plastic surgeons when facing cancer, but belive me it is worthwhile. I wasn't too in love with my boobs either, but the results are so much better if they do immediate reconstruction, so much skin is saved and it made the mastectomy a little easier to deal with. Let's focus on the positives (yes they are out there), you get to choose your boob size (I went smaller). If I were you I'd go and discuss the options, it is less surgeries if they do recon immediatly.

 You seem to have the right attitude to this,  remember you are stronger than the cancer and will get through.

Love and hugs

Marie

tos

Hi Amy,

My daughter was diagnosed exactly 2 yrs ago at 39 with bc and also is brca 1+.

She had the breast removed where there were two tumors.

Then she had her chemotherapy and radiation.  After that she had the other breast removed and completed her reconstruction.

She felt better about doing it this way, any way you look at it it is alot for a woman to go thru.

When you are diagnosed you are being scanned, tested, having surgeries and sometimes the last thing you want to do is think about another surgery.

I speak from experience also having been there and went with a bilat mastectomy before chemo and didn;t want to think about recon, another surgery, no thank you so my surgeon as he told me he would do left very little skin.  Now after looking back I regret I didn't opt for recon but they put or this disease puts a woman in a spot where she is just whirling with major decisions and usually they have to be made upfront and it just seems all backwards but that's the way it happens. Also this was my second go around and am brca 1+.

Best wishes Amy and maybe you could discuss w/your Onc doing the recon after treatment

to lighten your load.

tibet

Hi Galnok

Did you and your daugther have any node involvment? What kind of treatment you two had?

Thanks

stuartrose

Hi Amy.I'm 43 and started this journey in 2001, I had a lumpectomy then w a node dissection-all margins clear and 3 nodes affected. After chemo/red/chemo I had an opohrectomy-my Mom had bc and then ovarian cancer 20 years later. Fast forward 5 years I get a new primary in the opposite breast. I had a complete mastectomy and 9 nodes were involved. After I went through the chemo rad again AND finally found out I am BRCA1 pos. I decide to go in for a complete hysterectomy and once out of of surgery (approx 1 week) notice a swelling in my right supaclav area. They biopsied and it is my breast cancer mets. 

I never had reconstruction for two reasons. By now I am so sick of boobs and second I can't because of medical situation. There are fleeting moments where I wonder if I should have but as you know just as well as I do that isn't what is most important. I do wish I had gotten the mast, years before though...it might have saved a lot of grief.

Take good care.

Kris 

theredheadamy

Thank you all so much for your input!!!  I SO appreciate your replies.

I have appointments with two doctors tomorrow, so hopefully I will be moving along in the process very shortly.  I just don't think I'm ready to do reconstruction right now, but might consider it in the future----might.  I really am tired of my boobs hurting (yes, they hurt, especially my right side---I know bc is not supposed to hurt, but mine did---everyone told me that was a good sign when I went through diagnostics )  I really want to move forward and not put myself in s situation that may complicate or compromise my treatment in any way.  I really feel that if I can't live without them, I can fake 'em til I decide to go bionic. 

I wish the best for all of you!!

Thanks again for your opinions and time,

Amy 

living4today

Amy, I was faced with the same decision and am only a bit older than you (40)...never really thought about my boobs before hand.  IDC 2 cm L breast.  I am not braca + but didn't know that at time of my decision, my BS told me that if I was braca+ I would have an 85% chance of BC in the Rt.  I decided there was no way in H _ _ _ that I want to go through this twice.  On xmas eve I had a bilat mast/expanders.  While the surgery was met w/post op pain and have had discomfort w/expanders, I am so thankful for the guidance in making this decision.  First of all after surgery my clothing didn't fit right without and breasts (and I was only a , I tried using a falsie, but just felt really weird.  The expanders are not what I would call fun or even comfortable, but I do know that after chemo, etc...and have the exchange...I will have a nice set of "girls"...I was teasing my husband that I will still be perky at 80!  Incidentally after mastectomy, path came back that I had 5 cm DCIS in rt (mammo 1 1/2 mo earlier did not pick up.)  Good luck with your decision and know that regardless of what decision you make..the one you make will be the best one for you!!

PineHouse

Amy,

I would strongly agree that your best bet is mastectomy.  However, I do not think you need to do immediate reconstruction right away.  You can always go back to recon later on.  There's a website/forum dedicated for hereditary BC (BRCA1 & 2) www.facingourrisk.org.  Lots of the ladies there actually are considering prophylactic mastectomy before being diagnosed, but maybe there are some stuff about reconstruction etc.

Wish you the best.

theredheadamy

Thanks for your support and opinions.  It's easier (for me at least) to hear opinions from those who have been there, done that, and can understand exactly what it's like.  No one else knows.

Anyway, an update:  had bilat mast and total hysterectomy on Wednesday, and the surgeries went well.  The nursing care in the hospital, not so much.  Fortunately I was able to get home within 24 hours after surgery and let my husband be the nurse .  More pain from the hyst than the masts, but having 3 drains is a fun chore.  Was off narcotics by Friday morning, used Alleve a few times yesterday, nothing yet today, so it's been tolerable.  Sad thing is that my belly is still pooched out from the gas, and though I'm trying, it's hard to stand up straight with the bandages how they are, so I'm quite a sight, I'm sure.  I so want a long hot shower!!!

Anyway, I digress.  My point was going to be that I finally got some good news--the rest of my lymph nodes were clear.  The rest of the breast tissue was clear as well, which, unfortunately had me second guessing myself until this morning, when the first thread that caught my eye was about BRCA+/bilateral mastectomy recurrance.  So, I think I made the best, educated decision that I could with what we know.  My husband is much more adamant that there was no question about what to do   

So sorry about my rambling post this morning.  Think I just needed to connect with someone.

Everyone take care,

Amy 

g94u67

I unfortunately found out I'm BRAC1+ after my lumpectomy.  Spoke w/a genetic counselor and my chances are 64% for recurrence...oh lovely after BS said I wouldn't be positive.  I've responded well to chemo but w/these odds I'm very depressed. I'm definitley having my ovaries & f-tubes removed after TX.

 You did the right thing Amy and glad to hear you're recovering well & you've got clear margins. I am seriously considering a new set of girls myself now but worried about ins. coverage.

Jeannine

theredheadamy

I'm so sorry Jeannine.  I am so glad in hindsight that my surgeon suggested the test at the very first appointment---they were so surprised I was positive--and so glad I waited the extra weeks to make my final decision on surgery,  

Just take each step at a time.

Take care,

Amy 

tibet

Jennine

the 64% is not recurrence but a BC new primariy risk, right? Recurrence rate does not consider the BRCA genes in calculation. I don't know but maybe other girls can help.

g94u67

Thanks Amy. It is rare to test positive and I'm not mad @ my surgeon. My onc. was surprised too and is getting info for me. I know I still have time and my method of action is now waiting on being NED for the next 2 yrs.  (Why remove my boobies if I get mets? Negative thinking but true)  I am still getting the oophrectomy though.

Newalex:  Genetic counselor told me that the 64% is for recurrence of my same cancer regenerating in the same breast. Shocking huh? A secondary cancer (in either same breast or other) has a risk of 27%.  With the oophrectomy (provided I'm still premenopausal) the stats are cut to more than half. However reading Kris's thread I wonder. 

Ugh this darn disease...

Thx girls.

Jeannine