Bilateral Mx or Lumpectomy?

Rubang82

My doctor tells me I'm a good candidate for a lumpectomy followed by radiation then tamoxifen.  My pre-surgery diagnosis is  infiltrating mammary carcinoma with both ductal and lobular features, stage 1, 1.3 cm, ER+, PR+ and Her2-.  I decided to do the genetic testing because I have 4 relatives who've had breast cancer including my mother who died of it at 45.  I just found out my BRCA results were negative.  Still, my gut is to do a bilateral Mx to do everything possible to avoid going through this twice.  I am 45, I have two boys, ages 6 and 2 and want to minimize impact and future risk.  I understand that it is the follow on treatments that address this current cancer and that the other mastectomy is a prophylactic for reducing the chance of a new cancer.  Is it crazy to do be seriously considering a bilateral with reconstrution when the doctor thinks lumpectomy with radiation and tamoxifen would be a reasonable course of action?

greenfrog

My lump was 1.3 cm too - I am 45 and have a 3 year old.  This tumour appeared under the scar of a lumpectomy for  a "benign" tumour that I'd had removed 10 years earlier. So when the cancer diagnosis came through I didn't hesitate - it had to be a mastectomy for me. I have hated being lopsided and am now having the other breast removed. I  didn't feel that reconstruction was for me. I don't want to undergo the misery of mammograms in years to come and I can't stand the stress of every twinge - all the worry of is it or isn't it. I know that my greatest risk is from developing secondaries elsewhere - but I will be happy to be completely boobless.

It is a very hard decision to make and a very personal one. Both my surgeon and specialist doctor said that in my shoes they would have bilateral mx without hesitation. That was enough to sway me. So, no, I don't think you are crazy! Good luck with it all, whatever you decide.

Rubang82

Thank you for your reply.  It helps give me confidence about doing the bilateral.  I didn't realize that I'd have to continue to have mammograms if I had a bilateral with reconstruction.  I had heard that I'd have to have an MRI every few years to check for 'silent ruptures' of an implant, but nothing about mammograms.  I'd think a mammogram would cause a rupture...I guess I have to do more research about the recontruction implications.  Thanks again. 

Everett78

I am 49 and have children that are between 3 and 13.  I found the lump on my own and my OB couldn't find it when she tried, I have no family history.    I knew immediately that I wanted a BMX.  I didn't want to spend my life worrying.

 My lump was 1.4 (er+/pr+ her2 - 0/2 nodes)and I also did 4 rounds of chemo.  I wasn't happy about the chemo, but I wanted to be aggressive.

My breast surgeon suggested the lumpectomy, but when I requested the BMX he understood and said if it were his wife he'd do the same thing.

I did have reconstruction with TE.  I'm all expanded and waiting till I can have them replaced with the final implants.

I had 2 friends who disagreed and thought I should just have the lumpectomy.  They thought I was being to drastic.  They did come around and supported me.  I'm happy with my decision.

I hope you can come to a decision that feels right. Deb

Susie123

I'm 49 and have 2 teenage children. My cancer was in the right breast only but I too chose the bilateral mx with tissue expander reconstruction. I've never regretted it. I have 2 friends with BC that chose to only have the one breast removed. One 2 years ago, one 4 years ago. They both now wish they would have taken both. It's constant worry with repeated testing and biopsies. I'm not the type who can handle the constant worry and I wanted the treatment that would give me the best chance of beating this. I know everybody's different, but for me this was the right decision. Hope that helps.

Susie

Charley

Rubang - I too have a strong family history ...  All my female relatives on my mother's side of the family, (over the age of 25)  except one, have had breast cancer. (7 total)  My mother also passed away from bc at the age of 43. Three relatives have been identified with the BRCA2 gene. I was tested for the gene twice, first in 1999 after my youngest cousin was diagnosed with bc and then just recently after my own diagnosis.  Both times I was negative.  Because of the strong family and my age, both my breast surgeon and oncologist  recommended BMX despite my gene status. Gene testing is still a developing field.  Who knows what developments and discoveries will occur in the next 10 years?  I want to be around for my kids (youngest 11). BMX was the right decision for me.

Hugs, Charley

CTMOM1234

I'm the same age as you, also the mom of 2 young children and also stage 1, and initially was deciding only between having 1 breast or 2 breasts removed. Definitely wanted to be aggressive and didn't want to live with worry. Before making my decision, I met with a plastic surgeon who approved my having immediate diep reconstruction and I was willing to go through the long surgery and recovery (I knew I wanted to wake up with the same number of breasts I'd gone to sleep with and implants were not my preference). We even changed insurance companies to make sure that diep was covered.

Also had genetic testing, which came back BRCA1 and 2 negative, and at that point, breast surgeon added a third option: trying to get clean margins with a large lumpectomy and then having follow-up rads. He said he'd support whatever I chose, but did explain the loss of sensation even with diep reconstruction, and asked me to think long and hard about such a permanent decision. He's a very conservative breast surgeon., explained survival rates are the same whether I chose lumpect+rads or mast. (although recurrence is obviously slightly higher for the first) so was really surprised that he didn't seem to advocate full breast(s) removal.

The decision is so personal and emotional, and I was determined to never have regrets -- no matter what the future brings. Fast forward several months. My gut went with saving the breast and sensation. Lumpectomy margins turned out OK and now I'm nearly done with rads (have had 24 treatments so far). My breast looks surprisingly the same size and shape as the other one (C cup) and I love my scarred breast more now than ever. I sleep really well at night with my decision, and that is really the goal. We can't let BC take our loves away, both literally and figuratively.

Good luck with whatever decision allows you to sleep well at night, and keep asking questions on these boards.

nancyluvspink

Hi girlfriend!  All I can tell you is that I am 45 also, I have two teenage sons.  In 2000 (age 35) I was first diagnosed with IDC, the dr told me it was small and that we caught it early.  I had a lumpectomy and 13 lymph nodes removed, everything was good.  Went through surgery, chemo, and rads and moved on.  In 2006, I was diagnosed with IDC on the opposite side, this lump was bigger and I had one lymph node involved this time.  I was terrified but at that time never considered mastectomy or dbl mastectomy.  I just had the lumpectomy, chemo, rads.  In 2007, I had the genetic testing done. I have BRCA 1 gene.  I then panicked and asked my oncologist what can I do?  So...in 2007 I elected to have a total hysterectomy, after recovering (it took me a while), in 2008 I opted to have a double mastectomy with immediate TRAM reconstruction.  So, that is what I did at the time.  When I think about it now, I wonder why I didn't just have the mx in the first place, but we tend to trust our doctors and go with what they say is necessary.  I never imagined that I would get bc a second time, so it seemed like the right choice at the time in 2000Anyway, I have ZERO regrets for having the dbl mx and TRAM recon.  I now know that I have done everything I can to hopefully never hear those horrible words again...honey you have breast cancer.   Take care and best of luck.  whatever decision you make will be right.  Nancy 

1WonderWoman

Nancy-

I really appreciate your post.  I have stage 1, low grade, non-aggressive, albeit invasive, bc less than 1 cm (or mm..whatever...it is small!) but conventional wisdom tells me this just did not "show up" here because it missed a bus!  This is in my system and I feel, right now, as I consider over the next few weeks what I am doing, I am thinking I better just bilat mx now to be done with it.  I cannot, for even 2 seconds, imagine I will do the lump and rads and be done with it....I don't think so.  Personally, every 6 month mammos and being aggravated by that is too much to deal with at 40 years old.  I think I am tempting fate to not take very serious action and to just blow up the hotels these roaches want to live in!  I want to process a permanent eviction on this crap!  My BS also told me no rads and if the nodes are clean, they are not sure chemo would be required either as it is being caught early.  Ideally, I want to opt for the "foobs," no more bras, no more mammos and a cautious optimism about not having to hear those words again.  It is all too much anyway, all of those appts and biopsies etc... too much.  I can't deal with all that.   One year of extenders and fills and the like I can deal with but not every few months, for the rest of whatever my life will be, playing the "is it back" drama. 

I appreciate your being candid and suggesting you probably should have just done the double  to begin with.  This is the scariest thing I have ever been through.  I just can't imagine, in 3 years, with my large breasts heading for my waistline, lamenting getting a double now while the cleaning-out-of-this-junk from my life is good and where, God willing, I will live as long a life as I was supposed to and carry on, bc free. Some think my response is overkill for my diagnosis but I feel you can't overkill enough with this stuff.

waldo

Hi, I am 53 and had been seeing a breast surgeon for regular check ups for the past 7 years b/c of fibrocystic breasts and finding a lump was like finding a needle in a haystack.  I had the experience and non-pleasure of mamos, MRI and U/S. I know the anxiety of having to be called in for a second mamo and additonal views.  In December the BS found a lump which was cancerous and I made the decision to have a BMX after a MRI showed other "suspicious" findings as well.  I just could not go thru the rest of my life living the way i had been living.  . I switched doctors b/c I wanted someone affiliated with a cancer institute.  My new BS tried to have me do a lumpectomy and rads.  I insisted on BMX. He made me see a psychologist (part of his team and no charged)  before agreeing to remove the healthy breast. I met with her and was cleared and I forged ahead to have a BMX with Lat flap reconstruction 3/29.  The pathology of the healthy breast came back with diffuse LCIS. I made the best choice of my life- no regrets EVER!!!  I was aggressive but so is cancer.  Do I consider it overkill? Not at all. I consider it a gift I gave myself in terms of future quality of life.  I had the experience of being followed closely before ever having cancer and it was a pain.  I couldn't even begin to imagine how often and how closely they would monitor me with my lumpy breasts after cancer.  For me it was a no brainer and I am having a boob job as well. It takes a great deal of soul searching and a BMX as prophylaxis is not for everyone.

Kleenex

Rubang 82 - I was 45 at diagnosis with two preteen girls. This is one of those bizarre things about breast cancer treatment: you can "pick your own surgery." For a small tumor, anything from a lumpectomy to having both breasts removed is "appropriate."

The long-term chance of spread of the cancer (mets) and long-term survival rates appear to be the same for either lumpectomy with radiation OR mastectomy. Obviously with less breast tissue, you'll drastically reduce the chances that you'll have a new lump in a breast or a recurrence, but it's the spread that gets you, not lumps in breasts.

It comes down to being a personal decision, really. I am not a big worrier, and prior to my diagnosis I did not ever have a call-back or a biopsy or anything during my annual mammograms, which I had since about age 38 (I was moving and wanted a baseline). My post-diagnosis MRI indicated that there was nothing in either breast other than the lump I found. I had never had any surgery or anesthesia before, so the idea of dealing with a long surgery worried me. I also wasn't ready to have no breasts, so I knew if I opted to do the BX, I'd need reconstruction. I allegedly didn't have enough tummy fat to create a new pair of breasts,  so it was recommended that I do implants if I had the BX. I wasn't excited about the rates of complications and issues with implants.

For me, the decision to have just the lumpectomy and radiation was the right one, even though I briefly did have a BX scheduled early on. I'm okay with follow-up every six months. My body is pretty much the same as it was prior to the surgery, and it was nice to recover quickly from a smaller surgery and get on to radiation and then Tamoxifen. I think also that having a slow-growing, hormone receptor positive cancer made it easier to choose the lumpectomy. I stopped BCP's and am actively depriving any escaped cells of estrogen.

For some women, the BC diagnosis follows years of breast torture. Or they become very stressed out worrying that a new cancer will be found. If it's going to make you crazy, it may be worth it to have the bilateral. 

As a less-is-more person, since it didn't seem to make any difference as far as long-term survival was concerned, I am very happy that I just did lumpectomy. I knew I could always do more if I needed to - you can't put things back on once they're removed. Make sure you do lots of reading before you pick a procedure - there is a lot to learn about breast conservation surgery vs single or double mastectomy, and about reconstruction as well. There are interesting things to note, such as regional differences in surgical treatments: in the middle of the country and in the South, more single and double mastectomies are performed. On the coasts, where the educational and research centers are located and newer procedures tend to emerge, they push more for breast conservation surgery. Dr. Susan Love's Breast Book is excellent for this, although it's very detailed.

Good luck to you! You will choose the procedure that suits your situation, and you'll be able to tell because you'll feel at peace with your decision. Once you do that, don't look back!!!

Coleen

MRDRN

Thanks to all for your very clear and sensitive posts.  All of this information is so helpful to read.  I am BRCA 1 and will be meeting different docs this week for my final decision making.   The sensitivity issue is big for me too.  I hate the thougths of just cutting off the nerves, yet I don't want to be bothered by Rads, yet who wants to deal with this every six months and all the worry?  Breast Cancer should not be given anymore more "floor time" than it needs!!!! Then I know of the many complications with recon, ....but waking up knowing I did everything to see my grandbaby someday? I am going to continue to read and reflect.....thanks again.  All I know is that unlike my mother or grandmother or aunt who died, I have more options today thanks to the medical community and their years of dedication to allow so many to get an earlier diagnosis!.  

***Long term survival is the same but if  you have BRCA gene, it is a different story.  I guess BreastCancer.org site could add the gene question to the other profile questions that go under Diagnosis with our posts so we keep it in mind, but it only affects a few of us compared to the whole BC.org community   Just llike the Triple Neg status...If I did not have the gene, I would def go with lumpectomy....for sure, and move on until the next dx which could be a long time....but I am still asking these questions to a dedicated BS.

Kleenex

MRDRN - I totally agree with you - I'd have likely gone with the BX if I were genetically predisposed. Although there's nothing that would've saved me from radiation due to the location of my tumor. I did come close to having a bilateral - ILC freaks everyone out with its sneakiness.

The genetic counselor I spoke with after my lumpectomy said that the thing with the BRCA analysis would not be to question my breast surgery, as I would be monitored, but to deal with the ovaries, as there's an increased risk of ovarian cancer with BRCA defects and there are no good screening tests for that. Did you have your ovaries out with your hysterectomy? You've had a stressful 2010! Sorry to hear that. I hope you find a PS practice you feel comfortable with. I think that the fact that they also do so much elective augmentation, etc., makes the staff a pain in the butt as far as scheduling and payment. They need to be more sensitive when it's a breast cancer situation!

Coleen

GryffinSong

I was given the same choices and I chose the bilat with no reconstruction. I figured it was the most aggressive, which would give me peace of mind. I chose not to reconstruct because I didn't want the extra surgeries, risk of failure, and I worried that it might make it a little more difficult to detect a recurrance. I'm 52 and "unattached", so have not faced yet what my decision might mean in a relationship.

Whatever you decide, hugs and best of luck to you!!!

MRDRN

Hi Coleen,

Yes I had my ovaries removed shortly after confirming I was BRCA positive.

Kleenex

MRDRN - Bummer to have to do that, but SO much safer...

MRDRN

yes, I feel like the Hot Flashes (surgical men) now is a natural treatment for my newly dx Breast Cancer until I get my surgery which is scheduled in June