Prophylactic Bilateral Mastectomy w/Reconstruction

RonyaDenean

I have been scheduled for a Prophylactic Bilateral Radical Mastectomy with Reconstruction on January 14th, 2015. My family has a strong occurrence of breast cancer, my mother passed from Breast Cancer in January of 2012 and my sister had the same surgery I am undergoing when she was my age. She is now 55 and living cancer free, I am 43. Both Grandmothers also had cancer. My sister had to have her nipples removed due to the milk ducts "bad" cells. My doctor has left this up to me at this point, I have no noticeable issues regarding my nipples. I would be so grateful for input on whether I should preserve my nipples or have them removed and reconstructed also.  Has anyone that preserved them had a reoccurrence of cancer in the preserved nipples? I am trying to research this, and truly feel lost and unsure of what is going to be best for my body. I have a very loving & understanding husband and 16 year old son, I want to make the best decision for them and myself. Thank you in advance for any/all experiences, views, facts or feelings you may be able to share with me. Take care, love & light to all. 

DiveCat

It really is a pretty personal decision. The risk of a cancer starting in the nipples is low, but not entirely absent. That being said, even many women who do have a cancer diagnosis choose to keep their nipples and many, many women I know who have had PBMX, including BRCA women now choose to keep their nipples with breast surgeons who support that.

I had a PBMX in April and kept mine. I had not planned to, until further discussions with my BS and PS, and am actually very glad I did keep them. My nipples before surgery were not perfect, but they were mine, and they still do look like mine. I really believe keeping them helped me accept my new breasts pretty much immediately. I had a biopsy of the nipple tissue done during surgery to make sure there was nothing concerning, and because of the implants it is really easy to feel the tissues in self exams.

RonyaDenean

Thank you so much, this helps tremendously! I am inclined to preserve them too. Right now, I'm just a little overwhelmed with questions, emotions and just plain stupefied!! I truly appreciate your kindness! Take care, love, light & positive thoughts your way!

 

Blessings2011

Hi, RonyaDenean, and welcome to the forum!

I have absolutely no experience with Nipple Sparing Mastectomy (NSM). My Original Girls were SO big and heavy, it was explained to me that my nipples would have pointed south from the get-go.

But I did want to make a point: DiveCat gave a very good explanation why keeping her nipples was beneficial to her.

Since you are having a prophy, you do have a choice. NSM is a tricky surgery sometimes, but when done right, the results are beautiful. However, should you not get the outcome you were hoping for, there is always the possibility of going in later and having your original nipples removed, and new ones reconstructed for you. Many women have had revisions like this. Sometimes there are "tweaks" down the road, as I'm sure your PS will point out.

This give you time to see how you like the results, and - like DC mentioned - make sure all the tissue is clear at the time of your MX. Hopefully, this might make you less anxious about the decision you make before January.

Wishing you the best!!!

RonyaDenean

Thank you so much, your words definitely help! Take care & Happy Thanksgiving!

 

RonyaDenean

Has anyone been met with hateful/hurtful words from family/friends when telling them about your planned surgery? A female cousin, who has survived breast cancer, asked me if I was "doing this because I want to or because I have to?"  She apparently doesn't believe that this will help stop breast cancer. I was taken aback by the intensity of her anger towards the surgery/option. I'm scared & this just freaked me out more. I don't understand why another woman would want to hurt a woman going through this time. Help...

 

farmerlucy

My DH thought a PBM was too extreme, and we "discussed" it for most of the three month wait for surgery. My kids were totally supportive. My dad cornered me and harshly questioned my decision. It wasn't easy, but I knew in my heart I had to do it. I never looked back. Don't you worry about those folks for a second. I truly believe we have a sixth sense. Listen to it . My surgery was unusual and didn't turn out as I had hoped. I have to say I get a little jealous when I hear of successful PBM with clear final pathology. I KNOW your cousin would give anything to turn back the clock and be in your shoes, we all would. You'll be just fine. The thought of my surgery was much worse than the actuality of it.

MorningGlory27

I am scheduled to have nipple sparing double mastectomy with reconstruction the first week of January 2015. I am also 43 years old and was recently diagnosed with ductal carcinoma in the right breast. It is a very personal decision, for me it was important to look and feel as "normal" as possible. According to my surgeon there is a very low risk to develop cancer in the nipple. It will be dead skin and purely there for cosmetic reasons. I fear of my nipple dying more than developing cancer in it. I have seen many pictures on the internet and none of the other methods looked natural to me. The fact that I will not have any scars other than the inframammary incision that is not visible, makes me feel very good. Where you tested for BRCA1 or BRCA2 mutation?

Blessings2011

RonyaDenean - unless someone has actually been diagnosed with breast cancer, and has gone through whatever treatment is appropriate, there is NO WAY they can understand how it is affecting you.

In fact, even if they HAVE gone through this, there is no way they can know exactly what you are feeling. We are all just so different.

If you haven't seen this before, here is a cute film that explains very simply what most of us need when we are caught up in the fear and uncertainty of our choices and decisions. It explains sympathy vs empathy very well.

There will be times when you just have to draw on your inner strength ( and you DO have more than you ever imagined) to deal with those who would question you or challenge you. Stand firm, hold your ground. Take the time to explain if you believe it would help. Otherwise, you can just say you are acting on the advice of your doctors after many tests and discussions.

https://www.youtube.com/watch?v=jz1g1SpD9Zo

farmerlucy

Welcome MorningGlory- Sorry about your diagnosis. It is terrifying. It sound like you have a great team of doctors lined up. I joined the monthly surgery sisters forum when I was diagnosed and that was so helpful. I know you were probably addressing the original poster but just as an fyi I was tested for the brca mutations (neg) and am trying to get my insurance to approve the expanded testing, though I'm not sure it will be that helpful.

Blessings - How have I not seen that youtube clip???? It is positively wonderful. Consider posting the link in a thread all its own. I was in that black hole once!!!! Thank you.

Moderators

Dear MorningGlory, Welcome to the BCO community. We hope that you find support and information here that can ease your way. This is a wonderful community of others with shared experiences who can offer understanding and encouragement. We hope that you will keep on posting and keep us updated on your surgery. Here is a link to information on our site about nipple sparing mastectomy. Best wishes to you.The Mods

cinvee

Add me to the list of 43 year olds having a PBMX on January 15th. I am fortunate not to have a family history, nor am I BRCA positive, but have other high risk factors. I have ALH, ADH and bilateral and FEA. I also have extremely dense breasts that make imaging very challenging for me. After a little over 2 years of biopsies, lumpectomies and a full hysterectomy I have made the decision to have the PBMX. I did not make the decision lightly, but now I am at peace with it.

I am having the same questions about keeping my nipples. Right now I am leaning more toward getting rid of them. I figure I am going through all of this to reduce my risk, and keeping even a small amount of risk seems not worth it to me. (I understand that the surgery does not eliminate my risk completely)

I can't believe how many decisions need to be made once I made the decision to move forward with the PBMX! I am hoping for direct to implants, but my PS said that it was 50/50 on that or expanders. My pre-op is Jan 2nd so we will finalize then I hope.

I wish you peace in all of your decisions and your journey.

Brip1geneticmutation

I am so sorry you are dealing with this. Thank you for sharing. How are you now?

I tested positive for a new gene mutation called BRIP1 in November. As you may know, it carries a elevated risk for ovarian and breast cancer. It is a fairly new gene mutation and there are not clear cut guidelines on how patients should proceed.

So, here's what has happened so far:

My mom told me she had the BRIP1 gene mutation and when I went to my OBGYN in Nov. he recommended that I see a genetic counselor. So, we mapped my family cancer history (high in ovarian and breast, especially on my maternal side) and she ran the genetic panel. So, like I said, I have this BRIP1 mutation.

Next- the genetic counselors recommended I see a gynecological oncologist. I did that, and she was very informative and we discussed options.

She said she could do a laproscopic surgery and remove the ovaries, but also mentioned the possibility of taking out my uterus as well. She said that way, I may be able to take some low dosages of hormones to help with the instant menopause onset (hormones are still very controversial too). She said this can be a lifestyle change and can cause problems for some people. A friend told me her surgical menopause was horrific and that she still deals with the side effects on a daily basis. There is no screening for ovarian cancer and it is a silent killer and often when found it is too late. I don't want that, but also have a history of depression and those side effects scare me.

In the meantime, Dr.set me up with a transvaginal ultrasound to check on things until I make any decisions about my ovaries and any possible surgery.

The genetic con. also recommended that I see a breast oncologist, so I did that too. I met Dr. Oncologist for breasts and she set me up with a breast MRI on this Friday, and I had a 3d Mammogram last week, she wants to do the MRI this week bc I have dense tissue.

Dr. Breast Oncologist mapped out some plans of action that I can take- ranging from least aggressive to most aggressive. Of course, she said I can get 3d mammos twice a year, or I can see a medical oncologist and take a preventative med... I think tomoxifin or something like that??? My friend at work took tomoxifin and it caused severe blood clotting issues, so I am just trying to learn as much as I can.

The breast oncologist also looked at my breasts and gave me a few options if I wanted to do a double mastectomy. She referred me to plastic surgeon to discuss those options for different types of mastectomies.

So, I am definitely in the information gathering stage and am seeking as much info as I can find.

Any insights would be helpful and appreciated. Thank you. I'm 36

RAK1

I'm sorry you had that experience! Several of my siblings all women were cruel! my brother was not. My children all grown up very supportive!

My mother cruel also! Not my problem.

I am keeping all negative people away from me, I have to keep myself calm and anxiety free as much as possible!

God Bless you! I care and we will go through this together! 

sas-schatzi

Rony, I went into the PMX pipeline in June 2009. Family history 21 woman paternal side 9 have had BC. Mammo  Aug 2008 clear NED. A total body fall in Sept. 2008, not sure if something in that fall contributed. Dec. 2008 MRI.  Delay between mammo and MRI was b/c there was NED on mammo i.e no imperative to get going.  MRI,  there was all the signals of a BC.  Jan. 23rd 2009, bx . Pathology showed a very aggressive BC. Ploidy 1.79(2), grade 2 (6).  Not good.  Feb.18th 2009, BMX and TE's no nipple sparing. Pathology: I moved from a grade 2(6) to a grade 3(8) in less than a month  AND the cancer cells extended up to the nipple. No clue how common or rare. Just happy all was gone. How often is a BC as aggressive as mine, no idea.

I was aggressive about getting all done. Three days from now I have my 6th cancerversary from BC