remind me why I'm having a double mastectomy again....?

laurakay

Scheduled Thursday.  I have family history, DCIS, grade 3 with necrosis, comedo, diffuse, all that.  I guess that's why, right?  Now, I'm starting to worry that I should have had a lumpectomy a month ago when all this started, instead of a needle biopsy--would that have made for a less radical decision?  I just read about someone having that wire-excision biopsy, and finding out right away that there was no invasive--so, why do I have to wait until after my SNB?

I suppose everyone starts to second guess two days before surgery?

I don't want to die of breast cancer, my #1 goal in this life now!  But I also wish I might have spared myself and my family what's coming with this surgery. 

Beesie

Laura, as I understand it, your area of DCIS is fairly large and you are small breasted.  Usually that means that a mastectomy is necessary, although sometimes surgeons are willing to try a lumpectomy first to see if clear margins can be achieved.  But with diffuse DCIS, a mastectomy certainly will be your best bet at reducing your risk of recurrence.  So having the mastectomy on your breast cancer side seems to be consistent with treatment guidelines for your type of diagnosis.

As for the second (prophylactic) mastectomy, only you can answer why you have chosen to have a bilateral.  We all think of these things differently and only you know what's right for you.  What's most important is that you have thought this thoroughly, that you understand the pros and cons of having a bilateral and the short term & long term implications of the decision and that you are confident in your reasons for doing this.  It is natural to get nervous before surgery but if this is more than nerves - if you are truly wondering if you should be doing this, that's another story.  You need to know in your heart and in your gut that you are making the right decision and you shouldn't be second guessing it.  If you are unsure, remember that you can always go back and have the second mastectomy later, but you can't change your mind once the surgery is done.  Sorry if this throws a fly in the ointment - I'm not just saying "yes it's normal to second guess your decision, don't worry about it" because this is too much of a life-changing decision to be unsure about it before hand.  But if it's truly just nerves, yes that is perfectly normal! 

Cowgirl13

Laura, Beesie said it so well and is what I would have said if I could be as clear as Beesie.

Here's the part that I would have said:  You need to know in your heart and in your gut that you are making the right decision and you shouldn't be second guessing it.  If you are unsure, remember that you can always go back and have the second mastectomy later, but you can't change your mind once the surgery is done.  Sorry if this throws a fly in the ointment - I'm not just saying "yes it's normal to second guess your decision, don't worry about it" because this is too much of a life-changing decision to be unsure about it before hand.  But if it's truly just nerves, yes that is perfectly normal! 

I hope you can come to some peace about this sooner rather than later.

Good luck, sweetie.

lizzie 

mom3band1g

laurakay,

I am so sorry you are feeling what you are.  I can totally understand though.  I can tell you that I did have  a lumpectomy first.  The lumpectomy just showed us that there is a tleast 4 times the amount of DCIS we originally thought.  I will say that I am glad I had the lumpectomy first....if that makes sense. I think going conservative the first time around is helping me accept the need for the mastectomy.   If you already know you have large amounts of DCIS you can maybe find comfort in knowing a lumpectomy wouldn't get it all for you.  I do have small breasts (not even an A!) and just taking my 1cm lump and the bs going for 1 cm margins all around did leave me looking a little odd.  If she had had to take anymore I would really be looking funny.

You have to wait until after your SNB because you can't get a final path report until they get it all out.  That's my understanding....someone correct me if I am wrong.

I hope you can get some peace with the path you are on.  I am scheduled for next week so I'm sure I'll be freaking then and you can tell me how great you are doing.  I do it so well (the freaking out)....as you can read in my other posts.

I'll be thinking of you.

kathy

Deirdre1

I had your dx with a very strong family history as well as a weird one (my father died from bc) and so I was encouraged to have a bi-lateral even though my DCIS was small... I fully agree with Beesie and even if I had to choose a mastectomy for the troubled breast, given a second shot at this I would not have had a prophylactic mastectomy on the second breast - it is a great loss and until and unless you are fully sure I would suggest you pull back and as Beesie states you can do it later.. It seems reasonable to say "I'll take care of this now" but this is a time when it truly does not make sense to "take care of it now" because honestly right now that breast does not have a problem!  I'm sorry - the last thing I ever want to do is create confussion but it seems as though you are already confussed and from my own experience that is no time to make a decision.. 

I've said this so many times I'm sure some of you  are sick of hearing it, but when we are under this much stress we tend to give more weight to other people's voices..  It is a time you really need to hear YOUR voice.. go to a therapist if you have to, get a second and third opinion and then, only when you are sure this is what you want and you understand what you will loose go forward.

I'll keep you in my thoughts this is a very difficult time and I only want you to come out the other end with a feeling of wholeness and wellness..    Take care!

IronJawedBCAngel

laurakay,

I truly am sorry you are having to go through this, but I agree with Beesie.  If you are not 1000% sure about removing the healthy breast, do not do it at this time.  Do the unilateral, and see how you feel as time goes on.  Once it is gone, there is no going back.  If you have not seen it, there is a thread on the reconstruction forum titled Regrets and Depressed Over Removing Healthy Breast.  There are opinions on both sides, but gives a real insight into some of the feelings some women do experience.  I have several friends who have gone through the same thing and have said they wished their doctors had not glossed over the realities of it before they had the surgery.  You want to know in your heart that this is right for you and you deserve to take the time to make that choice.  God bless you and bring you peace and comfort.

Lovegolf

Do what you think is right...I was told 30% of IT coming back or less than 1% ...so that made it easier to decide....it is normal to question. As I recall you are doing all of this so you are around to make your son's bed etc. for a long time to come.  This is your fight do what feels right.

dash

You have to follow your own heart in this matter. The chances of it coming back depend on so many things and even then, it may or may not return.

I had a bilateral and wouldn't change that decision at all. I am 3.5 years out and still very happy that I made the right choice. Of course, my pathology did come back with 3 stage 1 tumors in addition to more dcis than we thought on the cancer side and the 'proph' side had precancer. I'll never know if I would have regretted doing both if the proph side had been clean. But knowing who I am, I really don't think so.

Try to figure out if this is normal presurgery nerves or if your heart and gut isn't in agreement with your decision. I knew what my gut was saying to me loud and clear but I also wanted such a major decision backed up by logic. I kept a notebook with detailed pros and cons. The pro bilateral was weighted heavily with my own personal reasons. Anytime, someone questioned my choice, I took out my notebook. If I questioned my choice, I looked at it but I really didn't have a lot of doubts about it, mostly I felt "at peace" when I thought about the end result, I was however very nervous about the idea of surgery itself.

Ask yourself if you really know what to expect. I interviewed a lot of women by phone and in person. Some were from here, some were friends' friends, some were referred from ACS. Some had had no recon, some had delayed, one had a TRAM, one had a DIEP, most had implants. We talked about sex, sensation,  spouse reactions, regrets, clothing.... No stone was left uncovered as far as I was concerned and they were wonderfully open with me.

If you are still unsure, then don't do it. These are not easy decisions to make for any of us but since each of us has to live with our choices, we need to feel 'at peace' with them.

ruthbru

Don't do it if you are not sure!!!!!

Cowgirl13

LauraKay - i'm just thinking about you.  Keep us posted.  You are in my prayers.

Anonymous

I would have to argee with the others--don't have it done unless you are absolutely sure about  it.

anne

cookiegal

I think everyone has a moment of "get them off" when they first get diagnosed. The question is that perhaps your feelings are changing and you want to be more conservative.

Nothing wrong with that.

It makes sense that you might want to see the pathology before you decide about the healthy breast.

Lovegolf

Let us know how you are doing