prophylactic mastectomy

dageddes

I am BRCA 1, 34 yrs. I am having a double mast with immediate reconstruction (implant expanders) with nipple sparing. Has anyone had this fairly new procedure? Are the results good? Thanks for your input.

Beesie

There's been a thread going on in the Reconstruction Forum recently about nipple sparing mastectomies:

http://community.breastcancer.org/ubbthr...ge=0#Post479233

veggievet

Dear Dageddes,
You might also want to check out FORCE: Facing Our Risk of Cancer Empowered at:

http://www.facingourrisk.org

the organization is devoted to BRCA women and hereditary breast and ovarian cancer and many of the women there have gone with nipple-sparing procedures. The message boards are located at:

http://www.facingourrisk.org/FORCE_community/message_board.html

Hope this helps.
Warm regards,
Sue

beth1225

I am 47 and brca2+. I have already had a bilat oophorectomy and am starting tamoxifen therapy in January. It is also suggested having the bilat mast. I am still on the fence. Like, can they and how do they monitor for bc after surgery. I still am investigating recon after. if you ever wnat ot talk via email it is laryandbeth1@verizon.net. I live outside of Philadelphia and will probably go to Fox Chase to get some answers. This has been suggested in many a chat room here, since it is part of NCI. Hope we can help each through this. After all, that is why we are all here.

Hugs,
Beth

JaxsonHarley

I am 45 yrs old. I had DCIS 4 yrs ago,had 2 lumpectomies & rads, Now have found Atypical Lobular Hyperplasia bordering on LCIS, I am going to have a Bi-lateral mastectomy, and genetic testing for BRCA genes. If they are present, having the ovaries out too.Mother had breast cancer in her early 40's, mets to lung and passed away. With all these rik factors, I see no other safe option.Am seeing a breast specialist for testing and decision making, but I have already made up my mind I guess, will be looking over at the reconstruction board , because of previous radiation, to see what options and/or complications might be facing. Jaxson

melaniej

Hi Dageddes, I was diagnosed with BC, and BRCA1 when I was 31 and had a bilateral mast. with immediate reconstruction with saline implants, no expanders. They did a skin sparing procedure, but did not save the nipple. This was done 2 1/2 years ago. The only problem I had is that one was higher then the other, so that had to be fixed. My scares have really fade and I had the nipples remade and tattooed. My husband can't get over how real they look now. At times I still get sore, but in all, I am happy with them and my decision.

milklet

Just want to add that there are some very good plastic surgeons out there who do immediate saline or silicon implants at the time of double mast. You wouldn't have to go through the whole 'expander' thing at all.
best
rachel

berm

I had great results with the nipple sparing this past sept. It was something I really wanted. My p.s. felt comfortable with the procedure. It really helped me mentally to keep my nipples. I think in 10 years everyone will have the nipple sparing. Berm

lilly8

I had a prophlactic mastectomy and it was the best thing I did for myself. I just had my nipples constructed and I look great. The down side is some numbness otherwise I feel great sexy and beautiful once it is all over its about 9 months now and its in the past. I would highly reccomend this procedure. If you have any question please feel free to ask
Barbara
LCIS and strong family history

Anonymous

I had to think for a minute. Cause this is a big decision. This forum is for those who are high risk for "reoccurance or second breast cancer." Im in this category. Once I was diagnosed with bc, I had genetic testing and it came back positive for brca2. Lost one sister 46 y/o to ca ovary. So my choice was easy. I had bil. mast, removal of ovaries and reconstruction on 6-2-05. I dont regret it one bit.

I dont know what I would do if I wasnt diagnosed with bc but high risk. Ill never know the answer to that question cause it just didnt happen that way for me.

Nicki

nosurrender

I am in this category too. But I was in high risk for reoccurance even before they knew what my BRCA status was.

If my bc comes back to my breast then I would probably have both removed. But right now, they are checking to be sure it hasn't come back to another place like the brain or uterine lining... so I got all I can deal with now!

I am sorry you lost your sister Nicki.

love,g

beth1225

Nicki, i'm sorry if I posted in the wrong forum. I saw the thread and posted because it said "prophylactic mastectomy" and thougth I could get some insight.

I have lost a father, grandmother to bc and 2 cousins to ovarian. I am scared sh**less that I will get it too since I have gotten to the same age category as they did.

I guess I need to find a thread and check to make sure I should be there.

Anonymous

Beth: What in the world are you talking about. There are 2 forums with the same topic and I was just commenting this is where I should post.

We each have to make our own decisions based on our situation. I dont know what I would do if I were you. Like I said, I wasnt dealt that card.

Nicki

beth1225

sorry i misunderstood your post.

Anonymous

HeyBeth, thats ok! I truelly dont know what I would do if I were you. I think I might go down the same path your choosing who knows.

There are so many of you who are brca+ and are faced with decisions. I wonder what my grand daughters will do. These are stressful times. We need more women like you supporting each other and helping each other through some big life decisions.

And just remember, no post is ever in the wrong place.

Nicki

beth1225

thanks, Nicki. I just got off the phone with an old-timer here at BCO. We talked for over 2 hours! Anyway, she said the same thing about getting a bilat mast. I have great support here and at home. Even fro aas far away as Georgia with my godmother. She keeps sending me things to ask the ps that she expereinced after her lumpectomy and mast.

It won't be easy, so don't give up on me!

Raye99

First of all, I want to express how impressed I am with you ladies having the proph surgeries done - so courageous!! As all are all of you women on these boards!

I visited with the genetic counselor back in August just prior to my scheduled L mastectomy. He took my data and put it into the computer and said I had a 2-7% chance of having the BRCA gene mutation (which he said is high?). The test results would take 21 days, so I told him I would consider the testing after my mast and chemo.

Now that I have finished chemo, I am scared to death the cancer will come back in my other breast. I had a 5cm tumor come out of nowhere last June and spread to 3 lymph nodes. I found it myself, as I had not yet had a mammogram.

My father had non-Hodgkins Lymphoma at 59, my Aunt on my mother's side had BC at age 58; my grandmother BC at age 74 and greatgrandmother in her 80's. Another Aunt on my mother's side had myeloma in her early 50's.The genetic counselor felt my risk was lower, as I was dx'd in my late 30's, but still...scared.

I just made another frantic phone call to the genetic counselor's office to see what the status is with my insurance, they are checking to see if the test is covered (which it is, our insurance rep at work checked - two or more close relatives who've had cancer in the family qualified me).

If I do have it, I will have the proph mast on the other breast. I am nervous about the ooph, however.

With the proph mast, does the arm hurt as much as with the node dissection?

Raye

beth1225

Raye, I tested and found out I am brca2+ with a strong family history. I already had the ooph. If you already had a mast, the ooph will be a walk in the park. See if they can do it as a laproscopy (sp?). That is the way mine was done. I was in pre-op and recovery longer than the surgery! Recup time was minimal. Of course I was in immediate menopause. I am going to go get the proph bilat mast and the appt with the ps is on the 31st. I see the onc on the 22nd to get started on Tamoxifen therapy. Keep us posted about your appointments.

Raye99

Thanks Beth. I just heard back from the Genetics Center and they faxed me a form to sign, so I guess the ball is rolling. They will then contact me to come in for the test and I will anxiously await the results!

Glad to hear that the ooph was not a bad surgery. The Genetics Counselor did mention the laproscopy, as a matter of fact. I am already in "chemopause" and haven't had a period since September and am having hot flashes- this may or may not be permanent.

When are you having your proph bilateral mast? I wish you the very best with that.

Raye

beth1225

Raye, I see the ps on the 31st and we will probably pick a date then and start getting things coordinated between docs. Will keep you posted.

dageddes

Hello All...
Thank you very much for all of your input for my question.
I didn't provide my entire story initially; I had idc dx in 2003, 31 years old. Grade 2, 1 node pos, 1.6cm. I gave birth the day I found out, which they then immediately figured it was hormone related, turns out I was triple neg. Had 11 cycles of CEF, lumpectomy, no rads as I was expecting to do the full mast at some point.

So the mast/recon is for double reasons, high rec. rate and BRCA1.

I have the surgery next week. I have one more question that I forgot to get clarity on with the Doc.

Is all the skin removed (except nipple) leaving the chest very tight looking, or is it just hollowed out leaving saggy skin until the expanders fill in?
Probably a strange question, but really, I have no idea.
Thanks ladies!

dageddes

Hi Rachel

You wrote that they can do the reconstruction without expanders. I have been looking into this as it would seem a better approach. What I learned so far is the expanders are put under the muscle for 8 weeks, and the implant is under the muscle rather than just under the skin.
do you know of the benefits of this, or the limitations for getting the quick implants right from the get go?
I wasn't even offered the instant implants, it was expanders from day one.
my gp also didn't know why, and she hadn't seen anyone of her patients with this technique.
Now i'm really confused...

milklet

Hi.
My 'immediate' silicon implants are also under the muscle. I did not have 'nipple sparing' however. My ps is excellent, one of the top docs at UCLA, but I don't know where you are or if there's a ps in your area that is experienced in this procedure. Let me say that I didn't need to really 'stretch' my skin as I was a small B cup before the bilat mast. and wanted to remain a small
B afterwards. My implants look and feel pretty darn good, very even although not large, and I'm looking forward to "doing nipples" in the spring.
I do know that many doctors -even the best - do not do this procedure. My sister (46) is seriously considering bi-lat prophylactic mast. (no bc -- but brca2+) and will probably come out here to my doc in california to do it. Even though she is currently treated at Sloan-Kettering by the head of plastic surgery in NY! He only does expanders!
Anyway, I'll pm you with my email, if you'd like more info.
best
rachel

nosurrender

Rachel,
Can you tell me a little more about your immediate implants?
Did you already have rads to the site?
Or did you do this before your treatments began?
I live in NY, from what I just read about your sister, this isn't something readily available in NY I take it?
Any info would be greatly appreciated, I am facing a possible recurrance and may need to weigh my options here and if I was to do it, I would want skin sparing with immediate implants.
Thanks in advance,
g

milklet

I really don't know if there are other docs in NY who do it. I would imagine there are, I only know that the head PS at Sloan doesn't.
I had my rads AFTER bi-lat mast. with implants. I had all treatment (chemo, rads, hysterectomy, and AIs) after my implants, so I can't speak to whether or not a surgeon would perform the surgery on already radiated skin.
My left breast(implant) (bc side) was radiated and is definitely firmer than the right, but nothing crazy.
Let me know if you have any other questions.
best
rachel

nosurrender

Thank you for the info. My rads were five years ago so maybe that is a long enough time period.

I have a lot happening now, but I am glad to know there is this option.

I really appreciate it!

trumpkin46

to Raye99 - I had a rt mastectomy for LCIS and ILC with one node positive. A year later I had the left breast removed and bilateral TRAM/DIEP free flap reconstruction. My left arm gave very little trouble, although I had to keep both arms below the shoulder for 3 weeks to allow the arterial/venous graft sites to heal (and safeguard the blood flow in the new breast mounds). There was no node dissection on the prophylactic lt mastectomy side, which made everything easier. I have full range of motion on both sides now and the only down side is that I have some areas of numbness, but I reckon that's a small price to pay for the peace of mind that removing the other breast has given me. And NOW - nipples!!

My ps commented that he usually recommends TRAM rather than implants for people who've had radiation .... not sure why....

Best of luck.
Alice