Need Mastectomy - Should I do Bilateral?

krisvell · 10-04-2009, 02:41 PM

I am finishing chemo this week and having surgery on 10/27. I need a Mastectomy followed by RADs. Was told chance of re-currence to other breast is low 1% per year with max of 10%.

I am leaning to do just one but would welcome any thoughts.

Debbie L. · 10-04-2009, 04:04 PM

This is a personal decision, not really a medical one (most of the time). And many of us have asked it. How about starting a pro/con list and everyone add their thoughts, to help krisvell sort out HER thoughts.

Reasons women don't do bilaterals:

1. Desire to keep a breast that has normal sensation (which reconstructed breasts usually do not) and appearance.
2. Desire to avoid elective, extra surgery.
3. Unable or unwilling to hassle with insurance companies long enough to get approval.

Reasons women do elective bilaterals:

1. Desire for symmetry (whether staying flat or reconstructing).
2. Lack of trust in, or dislike of, surveillance for a new cancer in the other breast.
3. High risk for a second cancer d/t family history or genetic testing results.
4. Major concerns with lymphedema and not wanting to risk having to have node dissection on both sides, if a second cancer happened later on in the other breast.

Your turn!

krisvell · 10-04-2009, 05:07 PM

Debbie L,
Thanks for the info. You listed several things I didn't consider.

Cannon · 10-04-2009, 06:15 PM

My experience (personally, on this board, and in other cyberforums) is that the people who are inclined to go for the double mast, are very happy with their decision -- and vice versa. Meaning, people who only want to have one removed, even if they have recurrence later, feel they did the right thing at the right time. And really, that's all we can really do - make the best decision for ourselves with what we know at the time.

I have not yet had reconstruction - but I saw a funny tshirt I might wear when/if I do. It says, "Yes, they're fake. The real ones tried to kill me!"

Rebecca

Ruth · 10-04-2009, 08:08 PM

Hi:
I opted for keeping my lefty. I was about the same as you as far as risk goes and I wanted to keep the sensation of one breast. It is an enjoyable part of me. My reconstructed side has no feeling whatsoever. I don't like getting my lefty squeezed every year but I certainly don't regret the decision. I pray I made the right decision and so far it seems ok.
Hugs ~ Ruth

ElaineM · 10-04-2009, 08:43 PM

I have a feeling you know what you want based upon your personal situation and views on the subject. I know whichever decision you make it will be the right one for you.

LoriE · 10-05-2009, 06:00 AM

I opted for just the one with no reconstruction. Then my remaining breast developed benign cysts and tried to scare me to pieces. My onc said I had become an "imaging nightmare" and said he was afraid they might miss something. That was enough for me so I had a second mast 6 months after the first. Turns out there were only cysts, but I don't worry about it anymore. I said no recon, but opted for that, too after a very hot summer with prosthetics. Looking back, I wish I had a bilat mast with immediate recon. All done in one fell swoop! But I had to convince myself every step of the way that it was the right thing to do.
I will say that I hated having just one breast. I just couldn't come to terms with that. It was easier with both gone.
So - I've tried it every way you can have it.
I wish you peace with your decision. It's a tough one.

schoolteacher · 10-05-2009, 11:07 AM

I only had one breast done too. I also had neo-adjuvant therapy. I did Taxol and Herceptin.

Wishing you the best.

Amelia

vlcarr · 10-05-2009, 07:57 PM

I just had the right one done only. When I got a mammogram at the end of my clinical trial they saw something in the left and had to do an ultrasound and said it was only a cyst. My surgeon said there was no need to do the left since my cancer was not genetic but I have to say when they found something in the left I got that panic feeling all over again.

But, not going to sit around and worry about it now. One is gone and one is not. I can't have reconstruction until a year after I finish radiation so I'm not looking forward to wearing the falsie at all but this too shall pass.

I can't say I would make a different decision but my surgeon felt is wasn't necessary so I just left it alone. But, I know that isn't for everyone and you have to do what you feel is best.

Good luck!

10-05-2009, 08:41 PM

Not sure where you are being treated, but there are studies that show you can have reconstruction before and during radiation (I suppose it might depend on whether you are having an implant or a flap procedure - implants might be easier). Do a little web research, you will find some answers that might surprise you -

Karen Wheel · 10-06-2009, 05:11 AM

Only had partial mastectomy - so not actually walking in your shoes --- however, I think that reconstruction is out for me as they are very different in size (I see it) but not wanting to do more surgery. I would opt to make the good one smaller to match, before adding to the one we cut.

So, I have to agree with the others above - that you have to do what "feels" right for you at this time. My belief is "that everything up to this given moment is perfect" --- so .... it all brought me to this place and this time ... in health and in struggle to try to find center...

Hope that helps.... Karen

DianneS · 10-06-2009, 04:59 PM

I had bilateral mastectomies Sept. 2008. I didn't trust my boobs anymore and didn't want to hassle with mammo's every year and worry about a second cancer on the left. While there are no guarantees with anything in this life I feel I made the best decision for me. My husband thinks so, too. I really tried to do the best thing to save my life, and vanity be hanged. As my husband says....'they're only boobs'.

That's my 2 cents worth. As you know this is your decision and yours only. Go with your gut feelings.

All the best to you,

Dianne

krisvell · 10-06-2009, 06:04 PM

I just want to thank everyone who shared their thoughts. I GREATLY appreciate all the information. I now have many perspectives thanks to all you wonderful people on this group who are willing to share. I am a new member and am so glad to have found this site. What generous you all have been to me. I only hope I can pay it forward as you all have done.
THANK YOU...

Catherine · 10-06-2009, 10:19 PM

This is a tough decision. Those that have already posted have given good advice and input. For sure, just try to be comfortable and confident with whichever decision you make. I only needed to have a single mast, but chose a bilateral. It has been 3 years and I am happy with my decision. I was scared about reconstruction, so I passed on that. If I had to make the decision again, I would choose the same one. This was the right decision for me. You need to make the right decision for you. Do get the facts from your doctor and from your research. My doctor said there was no scientific evidence to support that removing the unaffected breast would keep me "safer." However, I asked him what his wife would do if she were in my shoes. He said she would opt to have both removed. My husband and I had already talked and we were both comfortable with the bilateral. Yes, I miss my boobs a little. However, I am healthy and happy to be here. Most of my friends can't even tell that my prosthesis....is not the real me. I am the real me. You will be the real you. Hugs and love as you get through this.

Catherine

Jackie07 · 10-06-2009, 11:11 PM

Well, Halloween is near, so I'm going to tell a scary story.

I did some research when I was first diagnosed in 2003. I told my surgeon I wanted bilateral mastectomy because of the Her-2, Stage I, Grade 3 status. She talked me out of it - telling me a 'lumpectomy' plus radition will do the job. I had 6 rounds of chemo and 33 rounds of radiation following the surgery.

4 years later, after repeated 'clean' mammagrams, I became very ill (took 3 consecutive days off work) and requested a mammagram 1 month ahead of the annual schedule. The pictures looked the same, but I finally got my surgeon's attention and she finally realized all the x-rays had been showing cancer growth but were misidentified as 'scar tissue'. Why didn't anybody tell me? I would have requested for an ultrasound to double check had anyone ever used the term 'scar tissue' instead of 'it looked fine' when notifing me the results.

So I opted for a 'bilateral mastectomy' 'again'. The surgeon carefully validated my request again just before the surgery. I really don't get it. Why would anyone want to take the risk when the simplest thing is to remove it.