Newly diagnosed and thinking about Bilateral Mastectomy

ninel

I have just been diagnosed with triple negative idc. My tumor is about 1.8cm on the mammogram. I am scheduled for an MRI this coming thursday. I am young (34) and have too much to live for. I want to increase my chances of survival as much as I can. I know this type of cancer is aggressive and I want to be aggressive in treating it so I am leaning towards having a bilateral mastectomy with reconstructive surgery. What I am afraid of is if I won't have any breast tissue left and have a recurrance that means it's metasticized, correct?

I would like to know how many women out there have had a bilateral mastectomy?

How many of you were diagnosed with a reocurrance? And how long were you in remission before it reocurred? Where did it reocur?   Or on the flip side.... How long has it been since you've been diagnosed and it hasn't reocurred?  

I need to know what I'm up against.

Ninel 

LisaSDCA

Hi Ninel - If you have a bilateral mastectomy and have a recurrence will be no different than having lumpectomies and having a recurrence - it will either be local or distant (the latter being metastatic). Neither one is good news, but a local recurrence to the axillary lymph, for example, would put you back in chemo for a time, while a distant means chemo until stable or NED (No Evidence of Disease). Removing all possible breast tissue simply means that your chances of local recurrence are greatly diminished - however, this is a goodthing. BC doesn't choose to try local first, and if there is no breast tissue then it metastasizes to distant sites. It can travel through your blood and/or lymph to your liver, bone, etc. without ever showing up again in your breasts if you opt to conserve them.

I was diagnosed very close to 1 1/2 years ago. After my chemo I had bilateral mastectomies with immediate reconstruction. I am BRCA-1 positive and had an even greater chance than the average trip. neg. that mine would recur in the same or other breast. Due to your age and triple neg. status, I hope you have been offered genetic counseling to see if BRCA testing is appropriate for you. Triple neg. and early onset are red flags for BRCA, even if you are unaware of any other risk factors. If you were to get positive results for this gene mutation, it can have an impact on your treatment decisions, so I encourage you to consider it. And it would certainly remove any doubt about choosing a bilateral.

BUT - as a triple neg., don't be resigning yourself to a recurrence already! Our tumors are known to respond very well to chemo. Many of us survive for years and years - my friend Bobbie is a 25+ year receptor neg. survivor - and going strong! You'll hear from others, I'm sure. Meanwhile, be gentle with yourself - these early days are the toughest - so much to try and grasp emotionally and then pressure to make medical decisions in circumstances you may be unfamiliar with. It gets easier to handle as things move forward. Not easy, but easier.

Lisa

Msklapkin

Hi Ninel,

I agree with everything Lisa has said.  In fact my situation is almost  the same, except I had my bilateral mastectomy before my chemo.  alos, my decion maker is being BRCA2+ and am a strong advocate for testing early so all surgeries can be dealt with up front.

I am 3 years since diagnosis in August and healthy(except for the cold I have right now!)

Take care and gather your information before making any decsions.  YOU have to be comfortable with what you chose for your body and piece of mind.

Susan

dhettish

Hi Ninel,

 I was diagnosed about 11 years ago w/ fibrocystic disease. About 7 years ago, an egg sized lump came up when I got a period. Had it checked and it was fibrocystic. I chose not to have it removed because it was so large and the docs did not seem to think it necessary. So we f/u w/ annual mammo's and u/s every 2 years. I had lumps all over my breasts.

Last April,  (age 49) I had a period after not having any for 18 months. Like usual, that lump swelled up and hurt. But this time it seemed to be a different kind of pain. I had had a mammo in Jan and nothing had changed. I decided to have it removed because it was getting bothersome. Turns out cancer had grown in the center. Not unheard of but not common either. Because I had fibrocysts in both breasts, I just thought I would not take any chances. I knew nothing about TN until I started doing research. (incidently, my mom had cyst removed at 49 and it was benign-no hx of BC in our family)

I made the decision based on what I knew and I don't look back. Because of the agressiveness of the cancer, my onc would not let me have immediate recon because she thought I would have more lymph involvement. Only had 1/23. I had my mast on 9/6/07 began chemo on 10/4/07 and finished on 3/11/08. I had my tissue expanders put in on 6/10/08 and just had my first fill today. So far so good!

Listen to your heart. You will make the right decsion. Then don't second guess yourself. Accept your decision. I cried and screamed before my mast but I went through with it. I was laughing and joking when I came out of surgery. My girlfriend (BC survivor and dbl mast) came over to help me take off the bandages. It was not that bad.

Right before chemo, we went camping. We were hiking and I jogged to an area. How wonderful to run w/o breasts! I ran all the way to the camper. But I knew I would not be comfortable w/o breasts so I opted for recon.

I have seen many women who are TN and have many, many years. Acutally for us, our chances of recurrence decreases with time. Not so with other BC.

Take care.  It's a hard road, but with the help of the women on these boards, we can get through it.

Debbie 

ninel

I am not concerned about the mastectomy. I am prepared to be as aggressive as I need to be to beat this. My concern is if there is no more breast tissue how likely is it that there will be a recurrance? And if there is wouldn't that mean it metastised to somewhere else?

Ninel

Msklapkin

ninel,

i think the answers you are looking for are best answered by your oncologist.  I had aggressive DD chemo to help kill off any chance of lone cells being out there to start growing again.  if it has not spread to your nodes, than a distant mets is less likely- regardless of mast or not.  the key is to get all the cells dead- by radiation, chemo, surgical removal, etc.

since you were HER2-- that means you had a less aggressive cancer.  that is a good sign Triple neg does not mean it will come back- it just means we do not have drugs to keep taking after inital TX (no hormonal therapy or Herceptin).

as many have said, there of lots of TN women out there with no recurrance. i am 3 years out and each month means my chance of reoccurance is less and less.

Again- have a good talk with your BS and Onc.  they can give you a good idea based upon your individual case.

good luck- since you are prepared to be aggressive, make sure your docs know this- now is the time- I wanted to be as aggressive as possible the first time around to avoid any chance of a 2nd!

Susan