Single or double mastectomy?

freyja · 01-14-2009, 01:23 PM

O.k. New concern. My single radical mastectomy is scheduled for next wed. the 21st, but I'm really wondering if I should get my surgeon to do a double. If we're removing one, I think I'd rather be even on both sides and do both, then if I decide to reconstruct later they'll both be the same still, instead of one real one implant. I am a dancer, I always wanted to be flat like the other ballerinas!
Also, I'm assuming this would reduce my risk of recurrence. I think they'll still recommend radiation to be sure the remaining lymph nodes and scar tissue are cleared, and my onc said in women under 40, radiation to one side of the chest wall can double the risk of recurrence in the other remaining breast.
My surgeon said before that he recommends just doing one for now because it's a lot to do and we can consider the other one later on, but I'm feeling like, why not do both now and not have to do it later on. I know people have doubles all the time.
Anyway, I left messages for my doctors to call me back on the matter, but I wanted to see what you've got to say, too.
Celeste

01-14-2009, 04:53 PM

In my own case I did not need double but did anyway; in part to lower risk of recurrence, but also just to get it all over with - it seemed easier to me to go through all the surgery and reconstruction just once, and not do it twice, but I know women who have done it the other way.

Audrey · 01-14-2009, 05:25 PM

Hi Celeste, I'm familiar with your struggle regarding the single or double mastectomy question. I decided to have a single mastectomy with a reduction on the remaining breast to help with balance & symmetry. A few years later I ended up having a mastectomy on the remaining breast anyway (due to a diagnosis of lobular carcinoma in situ--I could have watched & waited but said forget it, take it off, too). Now I wish I had the double mastectomy to begin with. Others may have different viewpoints, but I was relieved not to have to continually worry about the remaining breast. Good luck making your decision.

Debbie L. · 01-14-2009, 06:02 PM

It's an individual decision with no single right answer.

It sounds, Celeste, like you're making this decision in a reasoned and deliberate manner. You're not being rushed, and you know that it won't make a difference to your survival, either way. So I'd say - go with what you think is right for you, and if your surgeon balks, push harder or get another surgeon. If insurance balks, same advice. Appeal and do so assertively.

A mastectomy is not very major surgery, from a medical/healing standpoint. Emotionally it's big but that's another subject. The part of a mastectomy that typically causes the most problems (pain, restriction of movement, etc) is the axillary part of the surgery - the SLNB or axillary dissection. At least that was the case for me - I did have bilateral mastectomy with axillary dissection on one side and the simple mastectomy side was a breeze. The other side wasn't nearly as bad as I thought it would be, either. (I'm assuming that your mention of radical mastectomy was a typo and that you really meant modified radical. The true radical is rarely done anymore. It would qualify as major surgery.)

I chose bilateral mastectomies, for some of the same reasons as you and also because they couldn't find the tumor in the cancerous breast even when they knew it was there so I was not very enthusiastic about the worry of trying to watch the other one.

Now a few devil's-advocate thoughts, just to make sure you've thought of everything. If you're thinking of reconstruction, it is probably true that a better match would be possible after bilateral mastectomies. Although it might be worth talking about this with a plastic surgeon now, to get that input. If you do have radiation, that could affect the symmetry of the results somewhat. In addition, bilateral reconstructive surgery would be, well, twice as involved - and reconstruction is closer to major surgery than mastectomy is (depending upon what type is done) so one side vs. two is more of a factor. In addition, after bilateral surgery, some women wish that they still had a breast with normal sensation, even if it didn't match the other one perfectly.

Are you married or in a relationship? What does your partner think? I know that it's a personal decision but if everyone is in agreement it does help.

Let us know what you decide, okay?

Love,
Debbie Laxague

AbbyDawg · 01-14-2009, 06:03 PM

Hello!

In May 2006, I had the option of left lumpectomy or left mastectomy or double. I always tend to do as much as possible to be as safe as possible ... and to avoid additional things in the future, like another surgery. So I decided to do a double and with no reconstruction.

I ended up having IDC and DCIS, both aggressive grade 3, in left so if I had chosen lumpectomy, I'd have woken up to a mastectomy. And hearing that, I was even more relieved that I chose to have a double and avoid some additional stressing out and worry. I do still worry about recurrance though.

But I am single, was 52, and not concerned about appearance. And for some reason that I haven't figured out yet, I prefer to go "flat" and am not self-conscious about it. If I was wearing prosthetics I'd feel like I was walking around with a spotlight on my chest. But I'll figure that out some other time.

The only thing I do know for certain is that we are all individuals and all our choices are individual too. And that we have to make the choices in a hurry and under duress. But I do feel we are guided in our choices even when we don't feel it. And I know for certain this board is one place for love, understanding, reassurance, and knowledge from those who have gone before us leading the way!

You're in my prayers!

AbbyDawg

suzan w · 01-14-2009, 06:35 PM

I opted for double...invasive lobular has higher chance of recurrence in other breast. No regrets. I love being flat! No reconstruction for me. I agree that the most uncomfortable part of the post-surgery came from the Sentinel node biopsies...leaving numbness underarms...now I am used to it.

Melissa · 01-14-2009, 07:58 PM

Hello,
I opted for the double. I don't believe it reduces your chance of a recurrence (same cancer), however it does reduce your chance of a new cancer in the other breast by about 98%. I was at a higher risk of cancer in the other breast since I was diagnosed young. While I know I may have to fight the battle again some day I did not want it to be from a new cancer in the other breast. If the other breast was to get cancer it would probably mean chemo again. Chemo ups my risk for other health issues. Removing both breast seemed less risky. The axillary dissection was also the hardest for me. Best wishes,

ElaineM · 01-14-2009, 08:44 PM

I know nothing about mastectomy, but if it were me I would speak in depth with my doc about the pros and consand the reasons for our choices before the surgery to make sure we are both are on the same page and we both feel comfortable with the decision we make.

freyja · 01-15-2009, 12:03 PM

Thank you soo much for your help everyone. Currently, I've spoken to my radiation oncologist and surgeon. My surgeon is typically conservative in this matter and thinks I should leave the healthy breast alone, for now. He also said that if I make the decision for a double we'll have to postpone the surgery a week or two, and he thinks I should take that time to think about it. He said my right breast is very healthy and the odds of cancer appearing in that breast are very low.

My radiaition oncologist (a woman) said that it is certainly a consideration and despite whatever the odds are, my peace of mind is important. She's getting in touch with my medical oncologist to get his opinion included, and find out if we can do the gene test quickly, although that may not completely sway my decision. The fact that I am so young may merit the choice for double.

My feelings: Mentally I think I would have more peace of mind.
Physically I would feel much better being symmetrical and not have to wear a bra or prosthetic. Also, I'm ok with not having any more children. I'd also prefer to have only one surgery if possible and not have to go through this again next year. I'm pretty certain I'd prefer not to reconstruct.

Financially, I have good insurance coverage now since I kept my policy going on Cobra when I resigned from my job, but when that time is up, I'm not sure what kind of coverage I'll have.

The only pros I can really think of are having a breast with sensation, but the assymetry kind of overpowers that one for me. I'm a c cup so it's a pretty big difference.

I really like my surgeon, and I think he'll do the double if I demand it, he just wants to discourage it, since it's a big decision. He may not understand that I'm a very non-traditional girl, not so concerned about looking like a traditional girl. I like to keep my life as simple as possible.

freyja · 01-16-2009, 09:47 AM

Just wanted to update and say that my new surgery date is 1/28 since I will most likely have the bilateral mastectomy (one modified radical and one simple). My med. oncologist, radiation oncologist, naturopath and nurses are all supportive of the choice. So is my husband. Even my son seemed to understand the reasoning. I have an appt. with my surgeon next Friday to convince him I know what I'm doing.

Your advice was so helpful. Thank you.
Celeste

schoolteacher · 01-16-2009, 09:53 AM

Celeste,

Let us know what happens at the surgeons. I have been thinking about you often. You are about my daughters age.

Amelia

Terri B · 01-16-2009, 01:26 PM

Freyja,

Best of luck to you, girl. I think you are making the right decision for future peace of mind. I did the same thing. I don't miss my DD's at all. I do have some nice "foobs" but they are very small and perky (on me, anyway).

Keep in mind, your chest will almost be "concave" if there is nothing there. Just a heads up. That's fine with some ladies and certainly might be with you!

ninicruce · 01-16-2009, 01:48 PM

Freja,
I think you are making a good decision. I had a masectomy in 92 on left breast, one positive node, estrogen -positive- chemo and rad.
In '06 I had another masectomy on right breast, node negative but HR2 positive. Chemo and am continuing on herceptin.
If I had done a double in the first place, I feel that I wouldn't be dealing with this now. My dr. once said" to hit the cancer while it is weak and you are strong.-good words.
God bless,
jeani

Melissa · 01-16-2009, 06:06 PM

Celeste,
You know you might change your mind about reconstruction ( it can always be done at a later date). At first I didn't want reconstruction but I take my daughters to the pool a lot during the summer so I decided to go ahead with the surgery. I did everything - the implants, the tattoo and even the nipples. I'm happy and thankful to be a survivor.

Laurieanne · 01-17-2009, 07:27 AM

Hi Celeste,

I did a double even though my oncologist wasn't in agreement. They don't like to take a healthy breast. I didn't want to worry about it and stress over tests all the time. I did implant reconstruction. They started it when they did the mastectomy. Still in the skin stretching
stage. It was a hard choice and I was terrified, but I'm so glad I did both.
When my path report came back from surgery. I actually had three different cancers in my left breast. Even my oncologist said I made the right decision.
Follow your heart, it will tell you.
Love and Prayers,
Laurie

Mary Jo · 01-17-2009, 11:23 AM

Hi Celeste...

Sounds like you just want all of our opinions but you have made up your mind and have decided what's right for you. It is good to hear how others feel about it, what they've actually decided and how they feel about their decision.

I, like you, would rather have been "even" (flat) instead of having one side flat and a breast on the other side. From the beginning I, too, wanted a bilateral but my surgeon talked me out of it. I had my right breast removed.....proceeded with chemo, radiation and herceptin and when all treatment was over and it was time for my left breast mammogram.......they discovered I had a suspicious looking area of calcification that had changed in appearance since my last mammogram. They truly believed it was malignant but I was told "not to worry" (ya right) because if it was cancer they had caught in early. WELL........................you all know how you'd feel about that.

After having a sterotactic biopsy and waiting FOR WHAT SEEMED LIKE FOREVER.......I found out the calcification was benign......THANK GOD! IMMEDIATELY after hearing the "benign" verdict from my surgeon I told her I wanted the breast removed........NO QUESTIONS ASKED! She didn't argue with me and said, if she were me she would do the same thing.

I had the breast removed and after it was removed I felt so relieved...in more ways than one. Being "even" felt great to me.....having the worry of that area of "suspicion" turn into cancer being gone.........and then hearing the breast had NO cancer it ....all was a relief to me. I never once regretted my decision. AND, I was sure I never wanted reconstruction as I felt totally at peace with who I was.

I did decide after 3 years to go ahead with bilateral DIEP reconstruction and although certainly not perfect....they are pretty darn cool. I always say this..."it's nice having my own "bumps" again to fill out my shirt. I am by no means large chested (never was and never wanted to me) a little smaller than a B cup but it feels good to be somewhat "normal" again.

So, all that being said, I'm happy you have reached a decision and feel good about that decision. I think most of us who made that decision feel good about it too. Hey, we're all different.......we all can handle different things at different levels......for me ..... a TOTAL type A personality.......it put me in charge....and I like that!!!

Praying all goes well for you......

Mary Jo

ElaineM · 01-17-2009, 09:05 PM

Good luck with the chat with the surgeon on Friday. You have thought about everything and even consulted your other docs. That is good.
Who knows, maybe your body or your intuition telling you something through your thought process. I am a firm believer in listening to our bodies and our intuition.
You might want to make sure your surgeon tells you all the reasons he or she prefers a single mastectomy. You also need to make your views and the reasons for your decision clear to the surgeon.
Good luck on Friday and afterwards. Take care.

freyja · 01-17-2009, 09:55 PM

Thank you, thank you, thank you, everyone! Your supportive comments have been boosting my confidence so much.

My instincts are telling me to do this. It's been rattling around in the back of my mind for a few months, now, and when a very intuitive nurse at my pre-op anesthesia visit casually got me talking about it, I just got an overwhelming feeling I needed to push for it.

Making the decision also makes me feel empowered. I feel like I'm connecting the dots myself and taking charge of my own treatment. It's sort of a life lesson in assertiveness. I really like those words, "hit the cancer while it is weak and you are strong." Now I'm just so anxious for the surgery date to get here! We've postponed it enough already! At least I'm still on Herceptin. That makes me feel a little better.

I appreciate your generosity sharing these intimate details. I'm sure others reading it may benefit, too. We are powerful weapons in this battle, not victims.

Lani · 01-17-2009, 10:15 PM

It might show whether you have DCIS in the other breast or an occult breast cancer that doesn't show up on mammography or ultrasound and make the unilateral vs bilateral mastectomy decision easier.

Just a thought...

Debra · 01-17-2009, 10:34 PM

Hi had them both removed and do not regret it one bit. I was 40. Some would say that is young to lose both if you can save one. I did not want to live the rest of my life "feeling" and "wondering" every single day in the shower or at night if what I thought I was feeling was a lump. I was told that I would greatly reduce my chances of getting it in the other breast. That is all I needed to hear.
Do I miss my breasts? Absolutely I do but I had no choice with the one and weighing the stress everyday with the other waiting to find something wasn't worth it to me.
I have done the reconstruction. My husband bought me a t-shirt that says "Yes they are fake---my real ones tried to kill me".
Now I know not everyone would see the humor in that but one certainly can't argue with that statement either!
Good luck with your decision. For some it is a very tough decision. I have not heard of anyone that has regretted getting them both removed but often hear many regret not getting the other removed.