BRAC2+/DCIS not convinced to do BL Mastectomy

Jojogal123

Hi Ladies - I have read a few posts before posting this and I need your help. I was diagnosed BRAC2+ in 2007 - surveillance screening and just diagnosed with DCIS Stage 0 (no information on receptor status). Doctors strongly recommend BMX. I have it scheduled (as well as DIEP) for 3/13. I know I am doing the "right thing," but part of me feels like I am making a mistake. Here is my question, and please excuse me if it's indelicate. Have any of you NOT done a MX and wish you had? Or, on the other hand, have there been people in this situation that have done it and wish they hadn't? Part of me feels like I should spare my breasts, treat this with lumpectomy and radiation and continue my surveillance. Yes, the BC may come back, but I can deal with it then and keep my breasts. Please help me come to peace with the decision to do this. (BTW, have made peace with oopherectomy as I have 2 children and strongly see - and feel- the benefits of that surgery).

rozem

jo,

i did a bmsx but i had stage 2 Her2 positive cancer -

here is the thing, with certain cancers even if you catch it early with close surveillance you would need treatment.  For example her2 positive and triple negative get chemo on tumors as small as under 5mm because they are very very aggressive.  Because you have the brac mutation you are more likely to get breast cancer, the actual percentage can be given to you by a genetics counsellor (which you probably have since you have been tested).  I believe that percentage is quite high.  Also you are more likely to get a more aggressive BC like triple negative. 

I wish I had some clue that I was at risk for developing BC,  if you can prevent it, I would (in my opinion).  I have treated my cancer as aggressively as possible, however, I , like many women after a diagnosis, will always live with the fear that it may return (metasisize).  The fear does fade but never completely goes away. I would give anything not to live under that "dark cloud" and if I could have prevented it in the first place you bet I would have.   

farmerlucy

I have lived under the spector of this my whole life. First with my mother, now me. I tried to escape the beast, but I was not completely successful. I have never, ever, ever, ever regretted the PMX. Never. BC stole my mother and to some degree my childhood. I swore I would do everything in my power to keep it from harming my children. And I did.

BTW my DIL's family is BRCA positive. My DDIL is afraid to get tested. Her mother had invasive breast cancer at 35. I asked her pre-mx if she'd do it all over again (re MX) she never hestitated in saying "In a heart beat!" (She is 15 years out, yay!!)

Timbek2

I will give my two cents worth.  I have not been tested but assume I have a genetic trait as I'm third generation BC.  I am 40.  I did BMX and while I wish I hadn't (since I miss the old me) know in my heart that this is what I had to do.  My 40 year old mammo found it and it had already spread to my lymph nodes.  If yours is not in your nodes, you will not have to expose yourself to radiation if you do BMX.  Also, you won't have to worry about it growing in the other breast and spreading to the nodes down the road.  So to me that alone is a good reason!  But it is a very huge and personal decision.  My youngest is 7 and i wanted to be as aggressive as I could do eliminate the risk of future reoccurance.  Best of luck in whatever decision you make!

Becki

Jojogal123

Thank you all for your stories. I am definitely leaning towards having it. I need to hear these stories and scary statistics to know I am doing the right thing. I was not aware that <<Also you are more likely to get a more aggressive BC like triple negative. >> - this is the type of thing that is helpful to hear. Thanks for your input. Happy Valentine's Day!

runner1987

I'm in my mid-20s and opted for a skin-sparing, nipple-sparing bilateral mastectomy with immediate reconstruction, despite being a good candidate for a lumpectomy. I did not wrestle with the decision at all. Although I was (and am) sad that I'll never experience breastfeeding, in the end, it came down to not wanting to look over my shoulder for the rest of my life. Why would I want to keep these breasts that were a danger to my health and my life? The way I see it, they were weighing me down, making me sick and stopping me from being happy and carefree. I am far better off without them. Now my chances of local recurrance are less than 1%, instead of close to 15%.

It has been 5 weeks from my surgery and I'm happy to report that everything is pretty much back to normal! I have regained full mobility and I have absolutely no pain and only minimal discomfort. I can sleep comfortably, wear all of my favorite outfits (although I needed new, bigger bras - yay!) and even go jogging. I am beyond thrilled with my cosmetic result and, even though I still have tissue expanders, can honestly say that my fake set of 32C boobies makes me feel sexier and more womanly than my old, cancerous 32As ever did. 

If you are afraid of the surgery, let me put your fears to rest. It was no picnic, but I got through it just fine, and you will too. Honestly, I kind of had fun taking it easy and letting everyone wait on me.

I am completely happy and at peace with my decision to remove my breasts. However, I know that many women in my situation would have chosen a lumpectomy. In the end, the decision is yours and yours alone, and it is highly personal. But if you're worried you might miss your breasts, let me just offer my personal experience: I don't miss mine a bit! Good riddance!

Jojogal123

I don't know if anyone is paying attention, but I decided not to have the surgery and am very happy. Turns out the DCIS actually was triple negative stage one and I am having chemo. Doing the MX would not have saved me from that. I would just be going through menopause (did proph. ooph) AND chemo. Maybe I will have it in the future...but not to treat this cancer.

mdg

I am not BRCA + but I did have a BMX with no regret.  My original tumor was not found by mammogram - I found it.  I just didn't feel comfortable keeping my breasts after that experience.  I am very happy with my reconstruction results.  I know I made the right choice for me. 

Aditi321

I have a similar problem.  Because of strong family history I wanted B/L mastectomy.  My surgeon said they would have to remove all lymph nodes on affected side if I did that.  She said we could do a central node biopsy first.  I agreed and then she said "I want to do a lumpectomy and get that cancer out now" and we will see if it has gone to the lymph nodes (results were negative).  I told her I still wanted the mastectomies and she said we can take care of that after, so I agreed..  After surgery I was told I would probably have to wait till chemo and possibly radiation because of time frame and I could make my choice then.  I am beginning to feel I won't get the treatment I chose even though she was okay with my choice before. I don't really want to wait this long.  Has anyone had this experience?  I am ER/PR - and Her2 +

MelissaDallas

Aditi, have you had genetic counseling and testing? Often times what we think is a strong family history is not.

worryocd

Hi!  I know this response is late but I also tested positive for braca1 mutation about a year and a half ago.  I since had a hysterectomy as I am 38 and finished having children.  My mom was diagnosed with late stage ovarian cancer at age 46.  My aunts died from bc in their fifties.  I watched my mom have chemo and battle the disease. She died seven years later.  When learning about the mutation I decided without a doubt to do the surgeries.  I passed my mammo and MRI(Thank God).  My PBM is next month.  So far I am not worried about missing my breasts. I am scared about going under.  I hope and pray that my pathology is clean.   I don't want my kids to see what I saw as a  child...not if I could help it.  These decisions are so difficult.  I just pray that I could give my kids a disease free mommy for as long as possible. 

MelissaDallas

Brca 2 and Brca 1!have significantly different risks.

Aditi321

 

  Now oncologist wants me on new treatment only tested for 3 1/2 years.  This is Taxol plus Herceptin.  Anyone else on it?

BRCA1 & 2 were negative.  My mother had breast cancer twice and died at age 52, her sister died from breast cancer, 3 paternal aunts died from breast cancer, my 2 brothers, my grandfather, my father and most of my 6 paternal uncles had prostate cancer (there is a link to breast cancer),  My oncologist said there are undiscovered genetic markers for cancer so not to rely totally on BRCA.