Mastectomy Question

gumoore · 11-02-2006, 02:33 PM

I have IBC in the left breast, so it goes without saying that when I get to surgery time, the left breast and nodes are gone.

My question involves whether to get a bilateral mastectomy, that is get a simple (prophylactic) mastectomy of the right breast at the same time. Any thoughts you could share would be appreciated.

What I know is that if there is reoccurence, it is most likely either in the same location or mets; so I know that I'm not removing my right for medical reasons, though it doesn't preclude an occurence there.

I am, however, considering the esthetics. You see, I'm a D-cup and the thought of trying to manage a prosthetic for one side only, particularly when I have to beware for lymphedema. I'm considering the pros of not requiring a bra at all, not worrying about appearance by being lop-sided (not that I think it would matter to me, but still, you never know) and having the option of being a smaller size without breast reduction surgery.

I'm not ruling out reconstructive surgery either, I'm just trying to decide on the here and now part.

Thanks,

Sandy H · 11-02-2006, 03:37 PM

Gayle, sorry you had to come to this board but we are happy you found it. I did the bil for a few reasons. 1. I was a DD cup-didn't want to match it. 2. I felt, I was a high risk of it reocurring in the other breast-if it wasn't already there. 3. IBC is a very aggressive disease. 4. Knowing I would loose nodes on the right side I wanted to prevent that on the left-however I would not know if that would happen until surgery was completed. Needless, to say I have had a few friends who opt for the bil only to find out it was already there, in that case it would not have been found until late. 5. This disease does not always show on mammos-my breast were very dense from cystic disease- had repeated mammos each time. I had already had a hysterectomy and this was the last of my female accessories and so I was ready to give them up. After all I have said it has to be your decision. I thought, with a bil I would not need a bra! Well, because of the concave on one side from the MRM I have never gone out of my house without a bra!! Most of my friends do not realize or even remember I have no breasts. Reconstruction was not an option for me. I was told if there is a reoccurence after reconstruction it would be near the chest wall and not show up until it was in the lungs or bone. That may have changed as I know there have been some with IBC that have had reconstruction and you may hear from those. Good luck in what ever you choose to do. It was not a big decision for me being a DD. hugs, Sandy

tousled1 · 11-03-2006, 07:05 AM

Gayle,

I do not have IBC but did have a bilateral mastectomy and also was a D cup. I am very happy with my decision. I had a modified radical on the right side and a simple on the left. I originally thought I'd like reconstructive surgery but now I'm not so sure I will. I couldn't have it with the mastectomy since we already knew my lymph nodes were involved and that I would need radiation. My recovery was very quick -- I was driving one week after surgery! I do have my prothesis(S)?? but have only worn them about 2-3 times. I am quite content being flat chested and of course not having to wear a bra is a blessing! Opting to have a bilateral mastectomy is a big decision and one which only you can make.

pattyz · 11-04-2006, 08:47 AM

Dear Gayle,

At the time of my mastectomy, I was a 'C' cup. I did not have recon, nor anything done to 'good' breast. I thought I would be ok with some prosthesis. Spent several years trying out different kinds with varied results. None were totally, or even largely, satisfactory.

I eventually went braless, wearing loose tops. Bra for 'occasions' only. Yet it was a few more years to get ok with even that.

Now that I've lost so much weight and coupled with age, my remaining breast is so flat and small it is 'barely' there at all! Yet....... Now I do wear a bra with a trimmed up foam prosthesis when I go 'visiting' or want to look nice in something other than a loose old shirt.

ok, that's my story, nearly 7 years out.

If I were in your place, knowing now how things would be, I think I would opt for a good breast reduction in remaining breast. I know it is impossible to see in advance how you will feel about this, but 'try on' different scenarios. as if you haven't already, 'eh?? I can say that being lopsided, even at a 'C' has not been any kind of fun or ok for me. But, I am so vain at heart.

I was staged IIIb with Inflammatory and two Invasive ductal tumors with 6+ nodes of 26.

Very best wishes for you and peace with your own decision,
hugs
pattyz

Lolly · 11-04-2006, 12:51 PM

Hi Gayle,

When I was diagnosed in '99 in the left breast, I had modified radical mast. and opted to delay a decision on reconstruction until after treatment. Wore prosthesis but wasn't comfortable and as I did develop lymphedema in the left arm, the weight and pulling on that left shoulder plus constriction on the underarm axilla area was a concern, so I wore it only when going out.

Six months after finishing rads I recurred to left regional nodes, and by 2002 was NED and on Herceptin maintenance. At that time I had a right simple mast., as I didn't want the constant worry etc. Still delayed a decision on reconstruction, still just wore bra/prothesis when going out or expecting company, but felt so much better not being lopsided anymore.

I just finished rads to the right axilla for recurrence, same profile as original. Now I don't wear the prothesis even when going out, as I couldn't during rads and finally got comfortable being in public without "boobs"

I don't think I'll ever have reconstruction now, but that's my personal take. It is possibly still an option, but the longer I delay, the less important it seems to me and so for that reason am glad I didn't rush into it, lol!

Good luck with your decision, it's such a personal one and only you know how you feel about it in your heart of hearts.

<3 Lolly

P.S. I don't have IBC, just "plain vanilla" Her2.

Sandy H · 11-05-2006, 02:47 PM

I am not sure how many know this as I just found out last month. There is a new prosthesis out! I can honestly, say they are wonderful!! They are lighter and yet are weighed. There is an insert in the inside of the prosthesis that is velcro it can be pulled off and put in frig. for 30 mins. It works with the heat from the chest wall to keep you cool. Its not like it sounds!! It is great for women having hot flashes. They are called climate control. I have recently, purchased(my insurance paid) one for each side as my right side was a MRM and left a simple. I was fitted with a larger size on the right to fill in the space left from surgery. I don't even need any extra fill!! There is a bra called made by amoena, called elegant contours #2149. Its on the internet (Amoena) if anyone is interested in seeing these. The bra is extra soft, a mircro fiber that breaths and feels so nice with wide padded straps. My skin is super sensitive and could never wear bras always wore cami's when going out (very hot in the summer) or nothing in the house. I was fitted by a professional and can honestly, say I feel like a new person and now, wear them every day all day. No riding up and moving around they actually, stay put. I learned about these at a support presentation. Just thought I would share this. hugs, Sandy

skibunny · 11-15-2006, 08:54 PM

Dear Gayle,

I had a bilateral mastectomy with DIEP reconstruction two weeks ago. I had had a recurrance on the left side, but decided to do both sides because they can only use your tummy fat once for the reconstruction. I also did not want to be constantly worrying about my right side.

I am sore on the underside of my left arm, under my arm and where they removed lymph nodes. It feels like a bad sun burn and like novacaine wearing off. I was off morphine in 2 days and Percoset in 5 days. I have been on Motrin since day 6. Every day I feel better. I did a lot of research and am happy with my decision.

Good luck, I wish you well.

Skibunny

ElaineM · 01-06-2007, 09:09 PM

Hi,
I have her 2 inflamatory breast cancer. I did not have my breasts removed. I had lumpectomies when small reoccurances appeared. I have been using Herceptin, Navelbine and Armimidex as well as complementary medicine. It has been 8 years and there have been no distant mets so far. Each person has to weigh the pros and cons and make a decision that it best for that person after discussions with doctors and research. Of course that person has to take responsibility for his or her decisions.
Hang in there.
Elaine M
http://langetc.tripod.com/health11.html

sherri · 01-09-2007, 05:35 PM

2 months after my left mastectomy, I went with a group of people for a retreat, all except the care givers were BC survivors. Among us it was a very beautiful woman about 40 years old flat chest and wasn’t wearing any prosthesis. One day we went to a public beach, she wore a transparent t-shirt and shorts. She had her hands in front of her when she entered the water so people didn’t know she is flat chested, she went under water and came back screaming, oh my GOD what happened to my boobs; everybody at the beach except us who knew what is happening panicked and we were laughing. It was quite a scene.

I’m scheduled for reconstruction on Thursday, this is my vanity and telling you the truth I envy that woman and Lolly so much. I hated wearing the prosthesis and I had too because I had mastectomy on the left side, I had to make a decision to either get rid of the other one or have reconstruction. I wish I had the guts to accept what happened to me and didn’t care what other people think.

Sandy H · 01-09-2007, 07:26 PM

I am vain because I have never left my house without my prost. or wig or will I answer the door!! My husband is always saying, when the door bell rings, "hurry up and get the door" I run for the bedroom!! He then, says, "what is the matter with you why didn't you get the door?" Now, really with no boobs, no hair, it would give the person at the door a heart attack. So I just tell my husband, "do you want them having a heart attack?" I ask him why he didn't get the door and he says, "because I don't have any pants on!" He is so liberated where it is just him and I he simply runs around in his undershorts. Now, he opens the window and over the door, we live in a raised ranch, to see who it is and says, "just a minute I need to get my pants on". In the mean time I am in the bedroom putting on my boobs and wig. What a crazy house hold!! I have literally jumped over furniture, escaping, being seen without boobs or wig. I have a nephew who use to walk in without ringing the doorbell. He thought it was funny so I hung a door bell on the inside door so when he opened the outside door the bell would ring. He finally admitted that I win and he will ring the door bell before entering my house. I could write a book. hugs, Sandy

tousled1 · 01-09-2007, 09:28 PM

Sherri,

I loved your story about your friend. I had a bilateral mastectomy in June 06 and I did get my prothesis(s). I must admit though, I'm like your friend -- I don't wear them. I'm much more comfortable without and really don't mind being flat chested. It's quite a change from going from a D cup to nothing but I'm loving it. When I got my "fake boobs" I didn't want to be a D cup anymore so I got a C cup and when I put them on they just look so big - guess since I've been flat chested for so long I don't know what big is anymore.