Single VS Double Masectomy

I didn't choose to have a double mastectomy, but I am going to have the remaining breast removed and both reconstructed this coming summer.  I started out with the lumpectomy/rads approach, got so much rads damage that the breast started rotting off and hurting all the time, so I had a mast to stop the pain.  Since I can't deal with the idea of an implant (I just had something foreign removed, why would I put something foreign back in?) and belly fat can only be used once.  So, if I get righty lopped off and remade along with lefty, I won't have to worry about developing the beast in righty and not having any recon options that appeal to me.  I don't want to give up muscles for boobs, so DIEP is my choice.  Unexpected benefit--no more annual mammogram and then stick needles  in the "suspicious" or "concerning" spots horror sessions and a less than 5% chance of having to go through this again. 

My biggest regret is not having had a mastectomy from the get-go.

As you can see, I am really new to all this so I don't know how much help I will be.  But,,, I had two lobular tumors in my right breast and nothing in my left that showed up on mammogram, at least.  I am a big weenie with pain so after my sugeon told me that my type cancer is the kind that spreads to the other breast, I opted for the bilateral radical mastectomy.  I won't kid you.  The pain was worse than I had expected, the scars are horrendous, but I am doing better every day.  Just had my surgery 12/22/09 so I feel like I am making excellent progress.  I am very glad that I made the decision for a double mastectomy.  Now I don't feel like I have to "keep looking over my shoulder".  I am looking forward to reconstructive surgery later on.  I am supposed to find out pathology results, etc. when I go to the Dr. in the morning.  Wish me luck.  :O) Good luck to you!

I had a mastectomy Dec 11 for invasive BC. The surgeon suggested having both removed because the biopsy also showed a possibility of LCIS/atypical hyperplasia and he explained the higher risk of geting BC in my good boob. Anyway, at the time I was pretty overwhelmed and didn't like dealing with the 'possibilities' based on the biopsy results and chose to wait until my surgery pathology results to know for sure what I'm dealing with. The surgeon reassured me that he could always remove the other breast if I change my mind, so I'm happy with my decision so far.

I know it's a hard decision, and wish you didn't have to make it. Whatever you decide will be the right choice for you.

Hi there, only you can decide what is best for, but like you....I asked a lot of "boobie buddies" why they decided to have or not have mastectomies.  My findings indicated that there were no women that regretted having them, but many wish they would have.  I opted to do both since I also had lobular.  My surgeon was wonderful and agreed to my request to remove both.  After the surgery he told me that the path report showed LCIS in the "good breast".  I have not opted for reconstruction because it does not make sense to me.  I look at my "cutlets" (this is the term my daughters and I use for my prosthestics) as another article of clothing.

Hi

I have also decided on bilateral even though my PILC is only on the one breast, for now.  Like so many others, I agonized over this, before coming to my decision.  My reason being that my journey started last March, and I have been on a continual roller coaster ride of biopsy, MRI, ultrasound, mammogram etc since then. In 9 months I have had 5 mammograms,2 ultrasounds, 4 MRIS, 1 stereotactic biopsy, 1 incisional surgery and 1 excisional surgery, almost all of them 900 miles from home. 

During that time, I have climbed the "lobular ladder".  I was diagnosed with ALH-March,        LCIS-June, PLCIS-October, PILC-November. On a MRI that was done in September, there is already something that has shown up, BIRAD 3 requiring follow up in 6 months.  That would have brought me to March and would likely being starting this all over again.  No Thank You! Lobular cancers tend to go to both breasts, and I don't want to be doing this all over again.

It is a very difficult decision, and everyone has to do what is right for them and only them.  You will make the right decision.

Cathy

I can only say what was right for me- don't feel pressured by the number of responses to one way or the other- just listen to what is right for you. 

For me I chose a bi-lateral (surgery was Nov 20th) Had inputs from others - no one with bi=lateral was sorry.  3 people with singles wish they had done bilateral- each for a different reason.  Reason1 - the worry about BC showing up in the other side, Reason 2 - She felt like her natural side and her reconstructed side carried differently - although it looked fine, she could always tell they laid differently on her body (example when exercising, etc. . Reason 3 - the lady was not having reconstruction and the prosthesis didn't match weight of natural breast and it was always hot, etc.

For me - I had ILC (Lobular) and it took them 5 years or more to find it...so I didn't trust that they would find it in my other breast.  They said I had a 30% chance or so.  I am satisfied with my choice and reconstruction shoud be able to give me a matched set - when I get through with chemo!

 Good luck in your choice.

Mickey,

I also just wanted to add to the "other side". Im younger than you, 32, but I have had a single mastectomy.

Believe me , I went back and forth..back and forth. Bottom line, I asked my oncologist what MY chances of developing another breast cancer in the opposite breast were....and he said 20-30% lifetime risk. So, 70-80% I will never have to deal with this again.

Ive also decided to do other things to help reduce my chances of cancer again. So regular exercise, finally get off the extra weight, no alcohol, mostly a plant based diet. Will it make a difference? I hope so. There seems to be a lot of info pointing to living a healthy lifestyle and developing cancer.

I must add though, if I was diagnosed with TN (triple negative BC) previous ILC BC or tested positive for either BRCA gene... I would opt for a double mastectomy.

Mickey,

 Funny , for me, it was a very easy decision. I absolutely, positively did not want to go through this again. I know there are no guarantees, but I feel that by choosing to have both off, I won't have to worry about "iffy" mammograms and my "dense" breasts.  I am a worrier and feel that I've eliminated a big risk. It's only been 4 months, but have never thought twice about it.

I think that Beesie said it correctly.  The double Mastectomy does not have any impact on the "CANCER YOU HAVE".  It is a personal decision.  I am Triple Negative and had chosen to have a lumpectomy, however, I then found out I was BRCA1+.  That really changed everything as my chance of a new primary was extremely high.  I was prepared to fight this once but knew I would regret not having a bi-lat mx if I got bc again.  I am 4 weeks out of surgery and don't regret it at all given my personal diagnosis and history.  It was not an easy decision but one I am content with.

I chose to have a double mastectomy after my 2nd Dx of IDC (both in the right breast). First time (2006) was RADS + lumpectomy. In '08 I was diagnosed with sclerosing papilloma on the left side (benign but worrisome, so it was removed). In Jan '09 MRI found a 4mm recurrance. By this time, both nipples were rendered numb by the excisions. I also had extremely dense breasts, with fibercystic condition that made things very hard to read. I wanted to throw up when my radiologist called me with the news, but after everything sunk in I determined that I really wanted to put an end to all the angst of annual mammograms, ultrasounds and MRIs. I asked my docs, got several opinions and was told by all docs that my request (BMx) was a very justifiable option.

I also requested immediate reconstruction and ended up having SGAP since there was not enough tummy fat for DIEP. Previous RADS made implants a less attractive option and I wouldn't have gone that route anyway after seeing what my mom went through with hers. I just finished my 2nd stage of surgery in November (where they created NIPS and did contouring).

I have no regrets. I went in knowing that this was what my body needed. Final pathology showed LCIS in the right breast, which as ya'll know is a warning flag indicating increased risk for bilateral cancer. No more mammograms for me (yay!) but the MRIs will continue (sigh) due to that darn LCIS.

On the plus side I have marvelous new perky ta-ta's, a butt lift and I am looking forward to 2010 and beyond - cancer free!

What are bra stops?

A friend of mine also requested BMx with no reconstruction. So they did not do the skin-sparing kind and now, two years out, she really wants reconstruction and will now require additional skin grafting if she does pursue this route. 

For me, even though one of my breasts was radiated with the initial Dx and I opted for bilateral mastectomy this time, my breasts don't match 100%, but they actually match better than they did before I ever had cancer and certainly a better match since I had radiation. And that is pretty cool!

My plastic surgeon said that recon following a BMx gives better cosmetic results that doing recon at different times (if that were to be necessary for the future).

See if this helps: write down all your options - single mast, bilateral mast, with and without reconstruction, write down all the plus and minuses. How do you feel after you read each of these? Ask your body what it wants - I know this sounds cheesy! But when I personally did this I felt a sense of confidence and hope when I thought about the option I ultimately chose. What was interesting was, on my first follow-up with my onc, he told me that he recommended this same process to his patients, because a lot of success in fighting a disease depends on your mind in addition to treating the body.

Good luck with your decision!

You've heard from plenty but thought I'd chime in.  I opted for double even though mine was only in one breast, I had no lymph involvement, it was not considered aggressive because I'm 34 I have two small children to raise and I don't want to have any doubt.  I've been happy with my decision and don't see myself ever looking back and questioning it.  I don't like it, but I don't question it, it was right for me.

Julie