To Double Mastectomy or Not

TexasPeaches · January 2010

Aloha All,

I was diagnosed with breast cancer on December 22nd, knew it was Grade 3, but learned today it is "Triple Negative." I'm scheduled for a mastectomy of my right breast on the 21st of January. After spending the day with oncology, I am wondering if it is wise to have a double mastectomy. The oncologist gave lots of statistics (reducing risk by 90% if hereditary, 60% in some other circumstance--me and the note taker missed this, but only doubling risk in 'lefty' from 10% to 20% with breast cancer in the 'righty') The oncologist would not weigh in one way or the other. The general surgeon says he sees no specific reason to do both now, but believes I am well within normal to consider the option--and has seen others do so with similar circumstances. Plastic surgeon says the same as the general surgeon. Genetic testing will not be back until after the surgery--I'm adopted. I want to minimize the number of surgeries. The primary goal is to "kill the beast." Then it is to have restorative work.

Can anyone weigh in on how they decided one versus two?

badger · January 2010

Edited to redact a post with personal information.

pdaw · January 2010

Hi Texas Peaches

As you already know it's a very personal decision. I had DCIS(right) in 2006 with a lumpectomy and 36 radiation treatments. Everything I was told made it sound like an isolated thing - stage 0. And, then in May 09, I was diagnosed with IDC in left breast. Another lumpectomy, followed by 6 months of chemo and then was to have rounds of radiation. I was told in both instances by 2 different surgeons that my survival odds would not increase whether it was lumpectomy or mast. I started thinking about my options after a couple of chemo treatments and decided that even if this would not increase my survival odds - that I'd rather take that chance. It makes sense to me to get rid of the cancer causing area. And, yes I'm triple negative also, stage IIA, grade 3. My genetic testing came back "unknown significance", which means they know nothing - except that I've had BC two times within 3 years. So, after talking with my oncologist and my breast surgeon and then them talking to each other, I'm planning a double mast. in February with immediate reconstruction. I have also seen a plastic surgeon and he thinks this is a wise choice for me. Sometimes the radiation damages the skin so reconstruction is more difficult. By having the mast. done, I will not have to go through radiation again. With already having BC two times, I just have this fear that if the cancer returns it will return to my breasts again. Best wishes and hugs to you as you make your decision. I understand the dr. - mine also did not say a whole lot initially - but I kept asking. I think the deciding factor for me and my dr. was the results - or lack of results - from the genetic testing.

Pam

puddingirl84 · January 2010

Hi TexasPeaches,

Even before my first bout with BC in 2005, the biopsies began in 2000. First one side then the other. My beautiful C+cups were being slowly whittled away. At this very moment I am barely an A+cup. Biopsies, radiation, and lumpectomies have taken their toll on me. After this most recent DX (read my bio), I made the decision to remove them BOTH. I am tired of it. I was still having mammography every 6 months and still there were questionable findings even between the cancer Dx's. My quality of life just began to suck. And the anxiety I would experience every 6 months would sometimes land me in the emergency room with elevated blood pressure. That's no way to live. I have opted to delay reconstruction, because that too was causing anxiety. Because of all the healing issues and I still have a lot of questions about the different procedures. I prefer just taking one step at a time. And I want to make sure I am cancer-free for a year before tackling recon.

So I will be removing what used to be "normal" breasts, having my chemo, then reconstruction.

This is my personal decision. I'll be honest with you, I don't know how I will feel when I see the two scars for the first time, or what I will see in my lovers eyes, but I am doing this for my own well-being, no one elses.

Sending you a great big cyber hug!

christina58 · January 2010

Hi TexasPeaches, I remember being up at night trying to figure that one out. The right breast was going no matter what, but at first removing the left breast was up to me. The p/s told me that because I had large breasts reconstruction might have a better looking result if I removed the left, but will be giving up sensation in both. And yes, the other doctors wouldn't advise one way or another. I told my docs I only wanted to deal with this one time so they could take them both, then I had a breast MRI and it showed abnormal areas on the left side. Turned out to be cancer as well. I have not had recon yet because it went into my chest wall, they did advise me against that, but plan on it as soon as I get the okay from the docs. I hope this website helps you as much as it has me over the past 11 months, you're never alone.-C

swest · January 2010

Texaspeaches - I am so sorry you are having to make this decision. When my "note taker" asked my BS "what would you advise your mother, wife or daughter to do" he said that he'd would advise them to have a mastectomy. Unfortunately, I did not think about my healthy breast at the time. It was when I was driving to my PS for my initial consultation that I thought about the healthy breast. I called my BS and asked him what the chances of getting BC in the healthy breast. He told me 35%. I gamble in Vegas on worse odds so I chose double. I also did not want to have to go through mammograms, waiting, anxiety. Blah, blah, blah..... Ultimately, it has to feel right for you. Once I made my decision I was at peace. I wish you peace in making your decision! Sonia

Edited to add: After the pathology came back from my healthy breast it was found that I had DCIS that did not show on the Mammogram or MRI. I was glad I choose double MX. Again, it was right for me. If you are religious you might want to pray on it.

Luah · January 2010

You really have to go with what feels right to you. From all the research I did, I opted for a lump (not a mast) and wouldn't have considered a double mast unless the MRI had shown up something suspicious in the other breast which it didn't. I didn't know pre-surgery that I was trip neg, and am not sure if that would have changed my mind or not.

Frankly, my biggest worry with trip neg is distant recurrence, and I was eager to recover from surgery and move on to chemo. If my genetic testing comes back +, I would go back and consider double mast.

Hoolianama0508 · January 2010

I chose to have both done to ensure that there would be no chance of reoccurence later on. Firstly, I did not want to live in fear of the other breast to develop cancer. Secondly, if it did come back, what if I wasn't healthy enough to have more treatment?

Luah · January 2010

Not to alarm anyone (hopefully doctors are providing full disclosure), but unfortunately no treatment of invasive BC can ensure no chance of recurrence. Even mastectomy carries some risk, albeit slightly less than lumpectomy.

HairSprayMom · January 2010

I chose to have a bilateral based on the type of cancer I had. My BS said it was a totally personal decision, but I did not want to run the risk of another recurrance so I opted to remove both. I also did not want to have radiation, and the mastectomy eliminated the need for it. I delayed recon for 1 year and I am finally to the point of getting the TE's out (tissue expanders) and silicone implants in. The only decision I would change if I could is that I would have had immediate recon and not delayed. I was so overwhelmed with my diagnosis that I just could not think straight. But I think it is better to get on with it and not spend the next 2 years messing around with BC and recon like I did. Also whatever you decide PM me your address and I will send you an apron to hold your drain bulbs after surgery. I make them for free for folks in need. If you have any specific questions PM me, I will be happy to answer anything for you!

Sending Love~~~

Regina

pdaw · January 2010

Regina - Like you I'm opting for double mast. because I'm also triple negative and my genetic testing came back inconclusive. Also, I had DCIS in 2006 in left breast and was diagnosed with IDC in right breast in 09. I had lumpectomies both times, but am now opting for the double M since the genetic testing came back as such and with my history.

I'm curious about the apron. How do you make it? I will find out very soon when my double mast. is scheduled. My PS is performing the latissimus dorsi procedure so I'll have 2 drains in the front and 2 in my back. Curious about anything that will make this more comfortable.

Pam

HairSprayMom · January 2010

Hi Pam,

Just PM me your address and I will make you one and ship it to you. I make these and send them all over. It is my way of giving back now that I feel better!

XO,

Regina

jenn3 · January 2010

I decided on a double masectomy because I had heard too many stories of women having a lumpectomy or one breast removed, then having it come back. And...... there are a lot of women who do just fine - I just didn't want to take that chance. When I told my onc surgeon he made sigh of relief and said that he and "the board" had discussed my case and thought that was the best decision. I knew my cancer was agressive, but was even more comfortable with my choice after surgery (because we found it in my nodes). Again, it is a very personal decision and I'm guessing the onc's don't want to tell us what they think for insurance purposes.

Good luck with your decision.

kittygriffin · January 2010

Hi. I was diagnosed December 21 2009 with triple negative B/C. I had node biopsey last week and showed 3 tumors largest being 1.8 cm. Im scheduled to have a lumpectomy and auxillery lymp node disection on tuesday. I have found a lump in my right breast and will see the doctor today. Last visit was stage 2 grade 3. Wondering if i would be better off to have double masectomy. Its kinda been a gut feeling from get go.Please give me some opinions and advice.

HairSprayMom · January 2010

Hi Kitty griffin,

I opted for a bilateral based on the agressive nature of my cancer (metaplastic carcinoma Trip Neg) and the fact that it was in the chest wall. I had to have a radical mastectomy on the cancer side and opted to remove the other for prevenative measures. Plus by having the bilateral I got to skip radiation, and only had Dense Dose Chemo. It is a very personal decision, but for me it was the right choice. I say go with your guts! My BS was so so supportive of whatever decision I made, I feel really lucky. Don't let them bully you into a lumpectomy if you feel a bilateral is the right choice for you!

Sending STRENGTH!!!

Regina

debbie6122 · January 2010

Hi Kitty, I know this is a hard time for you and i hope that what every descion you make you will be happy with it, for me, if i knew what i know now i would of had a bilateral, mx, and had recon at the time, i decided to wait because i just wanted to get it over with and not worry about any thing else at the trime, now at this point i dont think i will have recon because i dont want to deal with any more surgerys, having only 1 breast dosnt make any thing any easier, i think i would of been better off to have them both removed, a lot of woman are happy that way and dont plan on having recon, you dont have to wear foobies or bras either, but but then again the results of recon look great on the woman i have seen- So as every one says its a personal opionion on how you will feel with your descion, and i hear that lumpectomies leave a lot of scaring its all so confusing i know , wish i could of been more help,but good luck with your decision

debbie

carolinachick · January 2010

I was fortunate to only have one tumor that was 1.5 cm, so I chose a lumpectomy. I am thrilled with the results. Because of the location of the tumor (high up on the outside of my breast, I can even wear a swimsuit without anyone noticing that I'm a little "off balance." I do still worry about developing a recurrence, but for now am happy with my decision. If I end up having to fight the bc beast again, the girls will both be coming off.

kittygriffin · January 2010

Thanks to all you ladies for the info. I will go with the original surgery on Tuesday. My surgeon says this will help them know more about my cancer and get the nodes out. Then we will go from there. I hate having so much to think about and so many decisions to make in such a short amount of time. I do want what cancer we know about out. I also know if its worse than we think the girls are going !!! Wishing all of you well .

debbie6122 · January 2010

Kittygriffin- Wishing you well today thru your surgery you are in my thoughts and prayers, please let us know how you are((((((((((hugs))))))))))

debbie

carolinachick · January 2010

Kittygriffin - I hope you are resting comfortable and healing well. I'm thinking of you, especially since I had my lumpectomy one year ago today. I officially count today as my cancer-free anniversary. Take care of yourself and don't overdo it!

kittygriffin · January 2010

Well ive made it back home.2 days in the hospital and some serious wounds from this fight but alive and well. Thanks for all the prayers and well wishes.Go back on the 4th for the big picture!!! Hoping and praying all test results are good.Praying and wishing you all well. Have a great day .

thenewme · January 2010

TexasPeaches,

How are you doing - have you made any decisions yet? Ugh - it's so hard! Whatever your choice, I wish you all the best!

Kittygriffin, so glad you're doing well! Hang in there! Sending lots of healing vibes your way!

JenLovesHerMom · January 2010

Hi Regina,

I'm curious about the apron as well. My mom is having a dbl mastectomy on Feb 15, and am looking to find out anything I can do to help her be more comfortable afterwards.

Thanks so much,

Jen

mbk · January 2010

I had double mas nov 5 2009, my sister had double mas Oct 22 2009 we are both very happy we did. she was stage 0-1 and they found additional cancer in the other breast and I am stage 4 and they found additional cancer in my other breast, reason we decided to do both ..we did not want to go through this again, were able to have reconstructive surgery for both breast at same time by same dr... saved us addtional pain and worry no regrets .. PS our favorite tex is: (. Y .)

Ezscriiibe · February 2010

Kittygriffin: just wanted to say I'm glad to hear all went well with your procedure. I had my lumpectomy/sentinel node biopsy on 1/21 and am doing well. Did not need a drain, thankfully. I head to my med oncologist On the 4th too! One more step down the path, eh?

kittygriffin · February 2010

EZSCRIIIBE; Hope your feeling okay from your surgery. Im getting better each day. Waiting for all my results on the 4th. Yeah ..Just getting headed down this path is both good to be getting something done and scary too. Sending hugs and prayers your way . Have a blessed day !!!

To Double Mastectomy or Not

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