Lumpectomy vs. Masectomy

three17

I need advice. I know the decision has to be mine, but I would love some advice on what I should look for in the pathology reports to help me decide as well as femine advice.

shadow2356

This is a very tough, personal decision. In my case I decided on a bilateral mastectomy. I think I would have considered a lumpectomy but my doctor said it would be very disfiguring. I had my original tumor which was 1.7 cm, two satelites, one 5 mm and one 6mm and a 5 cm area of DCIS. Once I was taking one off I decided to do both.

I did that because I have a strong family history of breast cancer and I had a 1 year old at the time. I also had a Her2+ very aggressive breat cancer.

They say the survival rate for lumpectomy and mastectomy is the same. The recurrence rate is higher for lumpectomy though.

With a mastectomy you have no feeling in the breast. Not just no sexual sensation, but really none at all. If you want to do reconstruction it can be a lot more surgeries.

Ask a lot of questions. What do they think your possibility for recurrence is? What do you think your future fear level will be?

You will come to this decision. You need to make it and you need to be at peace with it.

Good luck deciding.

momand2kids

Hi

you should look at the size vs the size of your breast--- also, is it in one place or in several places?  Does your surgeon think he/she could get clear margins?  How do you feel about radiation?  

I had a lumpectomy with a 2.5 cm lump that was all in one place.  You cannot even tell the difference between my 2 breasts--- surgeon was great--good margins, no lymph node involvement--- I had chemo and radiation.... 

A mastectomy was never even suggested by anyone on my medical team-- they were clear that they could get it and get good  margins.  It worked for me-- it is a very personal decision--- you may want to look at the research on mastecomy vs lumpectomy and radiation-- they say the outcomes are the same.... 

While I never thought about it at the time, I am glad now that I had the lumpectomy--- I honestly don't have any reminders of the breast cancer physically..... but again, everyone has to make the decision that works for them...

CarylC

What is your doctor suggesting?  Mine said mx period.  Multi-focal disease meant the whole thing was coming off.  Multi focal DCIS on the other side, to  me, meant take that one too - I didn't want to deal with waiting and watching and preferred to be even if it meant flat.  

You can get a 2nd opinion if you are not sure if you agree with the first doctor.  The bottom line will be to do what feels right to you based on the advice you get from the professionals.

three17

Thanks it helps to hear from real people who have been through it. I am learning so much. I am going to a support group in two weeks to meet women who have had both and to meet with the plastic surgeon. thank you so much.

puce

I have the same decision to make.  I decided on the BMX with reconstruction.  I'm having it in Nov. My onc recommended this my surgeon said she could do a lumpectomy.  I want to lower my reccurence chance, one round of chemo is bad enough.  What they told me is reccurence rate with lumpectomy and radiation is 7-10%, mastectomy 1%.  Chance of survival the same.  My onc says for me she thinks, according to her experience, a 50% chance of reccurence.  She says she can't prove it but she is convinced my cancer is genetic even if I'm BRAC-.  I think it will help my piece of mind.

Shadow2356:  I'm having a a BMX with DIEP in Nov.  Any advice on how to prepare and what to expect? I have 3 kids, 5 months, 5 years and 9.  How did your daughter react?

pejkug3

I asked several different doctors along the way whether a MX would be preferred over a lumpectomy.  I was told NO over and over.  My surgeon said that I would be "buyng a lot of pain and suffering" and another doctor said that it would be like "killing a fly with a hammer".  I readdressed the issue before I had rads and I was told NO once again.

It's such an individual decision.  I had a small tumor in a large breast.  After surgery, I couldn't see a difference between the two breasts.  After rads, I am at least a cup or cup and a half smaller on the rads side.  But no one can tell in clothes.

Good luck as you navigate though the many decisions that need to be made.  I'm sure you'll make the best decision for you based upon your individual situation.

DocBabs

I went from LCIS to IDC in 3 years, all in 1 breast.When I rec eived the cancer diagnosis I knew that both breasts had to go .At surgery, the pathologhy on the "good" breast came back ALH and LCIS, none of which ever showed up on either mammo ,MRI or US.I'm just sorry that no one suggested BMX as an option when I had just plain old LCIS.Many women with this diagnosis are doing this. My first reaction was that they were way overreacting but in hindsight I wish I had done the same.My oncologist said that she would prefer me not to have radiation( as in lumpectomy) even though recurrence rates were about the same as with mastectomy. I've had multiple joint replacements done and compared to them the mastectomy was a walk in the park, almost.I personally looked at the word invasive and that made my decision for me.

dense

My cancer was palpable, but could not be seen on a mammogram.  Even on the MRI report, the radiologist wrote that nodular tissue made reading more difficult.  The surgeon and the oncologist said I did not have to have mastectomy, the radiologist thought it was a good option for someone like me.  She said if there was a recurrence, there would be a good chance it would act like this one -- be mammographically opaque.  So I decided to go for a BMX.  I had large breasts, so just doing one side did not seem like a good idea.  Pathology of the "good" breast showed some precancerous conditions, as did the pathology of the rest of the "bad" breast.  Maybe tamoxifen would have taken care of that, and it would have never developed into cancer -- but at least for now I have no regrets over my decision.  For me the opinion of the radiologist was the deciding one.  I had no confidence that if there was another tumor it would be found reasonably early.

mdg

This is such a personal decision and it's a hard one!  I can only tell you what things helped me decide what the right thing was for me.  I was 45 when diagnosed and my son is only 4.   You can see my stats below and my oncotype score was 17.  The things that made me determine lump vs MX were:

age of my son - I wanted to be as aggressive as I could

pathology report indicated I had angiolymphatic invasion

survival rates between lump+rad vs. MX were the same but recurrence rates were NOT the same

I had a higher chance of getting BC in my other breast now that I had it in one breast

I knew I would want reconstruction and I always wanted larger breasts (I was an A+ before surgery)

I opted for BMX and I had TE's placed and got my implant exchange in June.  There are various reconstruction options - so meet with a PS before you make a decision to discuss all of this and just know your options even if you choose lumpectomy.  I also found after meeting with two PS's that I was not a candidate for many procedures - I was only offered reconstruction with TE's and implants as I did not have enough body fat for DIEP and because I am so active (I teach aerobics) my surgeons would not remove any muscle from my body for reconstruction as it would diminish my ability to do what I love.  I would still meet with a PS even if you are not sure just to know all of your options. 

ppplocke

I was 39 at diagnosis (one year ago). No family history. BRCA negative. Had yearly mammograms for three years just because (all clean). Felt the 1cm mass myself. Was only in one breast. Did not show up on mammogram taken next day. There truly was NO "discussion" about it...both had to go in my opinion with implant reconstruction. I was urged by docs to do lumpectomy with rads but I wanted to live with NO REGRETS. So the decision to do bilateral mx was easy. And, one year later, I still feel the same way. Just my two cents. We all make the best decisions for us and for our families...there are likely no "rights" or "wrongs".

suzieq60

I had bc in both breasts a year apart. I've had lumpectomies and rads. My surgeon wanted to do a BMX after the 2nd one was diagnosed, but I refused. A friend of mine had a mastectomy for DCIS (multiple) and I said to her "Maybe I should have had a BMX" - she said "no way", it's been really tough on her and she wishes she hadn't had to have one. After TE and implant, she's had to have surgery on the other breast to match the size. I will have to have a BMX if I ever get another bc, but I'm glad I didn't so far. Both cancers were really small and I have big boobs, so there is no difference from how they were before except for a small dent in one.

three17

Ladies thank you so much for your thoughts, advice, and well wishes. I am looking ar reccurrance rate to. My sister had bc 11 years ago. She came back with a gene mutation but not BRCA, another sister genetically tested BRCA indeteminent (but she had a carcinoma near her pancreas), no known family history of bc until now.

I visit the ps next week and a support group as well. Puce good luck with your surgery!!! ((((hugs)))

annettek

three- let me chime in...as everyone has said- very personal choice but it is YOUR choice. Years before my diagnosis almost exactlyone year ago I had always said...If I ever get BC, I am getting a mastectomy". And that is what I said when I got the crappy news. I met resistance due to the patholy of my BC (early and small) but I insisted and persisted. And I have had not one regret. Zip. Oddly enough after I had it those professionals that had pushed for a lumpectomy agreed with my choice. I am not sure why since technically I was a perfect candidate for a lumpectomy and there were no surprises found during the surgery and resultant path tests and scans.

I do know the reconstruction process gave my mind something else to focus on instead of the damn cancer. Sure it was uncomfortable at times but so is radiation and chemo. In fact, whenever i have complained of any pain I felt like an idiot when considering what so many have no choice but to go through.

Recurrence rates, survival rates...hmmm....I have found in all my research that while those are guidelines in the end, it is all a bit of a crapshoot. There are no real definitive answers as we are all individuals with our own dna, etc.

I just had my new nipples tattooed (which created areolas) and I gotta tell you this...I am loving my chest. Which is amazing when you think of it. My old breasts did their job and nursed two babies. I don't mourn the loss of them. I know my weaknesses and I would have been playing the recurrance nightmare even worse than I already do (for there is always that chance no matter what anyone says). If the BC somehow manages to come back in the breast skin area or somewhere else in my body- I will fight it. Today, I feel great and am enjoying my reconstructed breasts (this from a woman who had said no to any kind of plastic surgery in the past) I love em:) Good luck and follow your gut...it is still the best indicator for this kind of thing:).

Erica3681

Hi three17,

I want to share my experience but also to mention that since you've posted your question on a forum that's normally read by women who are anticipating having mastectomy surgery or have already had that surgery, it's not too surprising that you've gotten more responses from women who chose to have mastectomies. You might try also posting your question on the "Surgery - Before, During, and After" forum, where you'll get responses from women who have made (or, like you, are in the process of making) the decision to have either a lumpectomy or a mastectomy.

For myself, when I was initially diagnosed with cancer in my right breast, I was happy that (after two wide excisions) the margins were wide enough that I didn't need a mastectomy. My lumpectomy was followed by radiation. The surgeries were minimally invasive and the radiation was not onerous at all. I had a very bad sunburn-like effect by the end, but no fatigue or other symptoms. Yes, I still had to undergo mammograms and still experienced the anxiety that goes along with that, but I enjoyed having my breasts and in fact appreciated them more than ever.

Unfortunately, three years later, I was diagnosed with extensive DCIS in the other breast, requiring a mastectomy. At that point, I decided (with my doctors' approval) to have a prophylactic mastectomy of the already-treated right breast. Even though I don't carry the BRCA gene mutations, I have a family history, and after two primary cancers I wanted to do everything possible to prevent a recurrence. 

Like annettek, I have not grieved the loss of my breasts, even though I chose not to have reconstruction. I wear breast forms (prostheses) which look totally natural in clothes. In your case, though, I would think long and hard before going the mastectomy route, assuming your doctors think you're a good candidate for lumpectomy plus radiation. Many women do grieve the loss of their breasts. If you choose reconstruction, even with implants, multiple surgeries are usually involved, most requiring general anesthesia.  And you would no longer have the sensations and erotic feelings that come with having breasts.

While my unusual situation (a second primary cancer in the other breast three years after the first) caused me to ultimately opt for a bilateral mastectomy, I don't regret at all the three extra years during which I had my breasts. In the end, you have to figure out what choice you're most comfortable with. Best of luck, whatever you decide.

Barbara

BreastFree.org

annettek

Barbara brought up a good point in that some choose no reconstruction and the firends of mine that have gone that route are happy with their decision. As for the feelings...we are all different as already stated but for some reason I have had a lot return in both breasts along with errr, erotic response (of course my new nips don't react but I do:)

nwest125

I started out with a lumpectomy but couldn't get clear margins so went back in a found a second cancer and I ended up with a BMX, I would have never did BMX if my lumpectomy had , had better results. It is all a personal choice and you never know what can happen when they get into surgery, I was suppose to be simple lumpectomy with a 5 day SAVI radiation but turn out totally different.. Good Luck on what ever decision you make.

Nancy

Erica3681

Hi annettek,

Yes, I too have feeling back across most of my chest -- I was really referring to the absence of nipple sensation (now that I have no nipples). Like you, though, it's weird what our brains will do. When I wear breast forms, most of which have nipples on them, I feel erotic sensations when I touch them, or even if I know my DH is touching them. Weird, but true, and not a bad thing...

three17

Thanks ladies, You help me clear up some questions that i have. Annettak I was reading about your tats and am happy for you. I am goinfg to talk extensively and see samples at the plastic surgeon. Also going to a support gorup where women like you will talk with me and actually show the results of the various choices. Thank you and Bless you all!!!

annettek

Always glad to help in any way as I have gotten so much help from here. I don't know if I mentioned the picture board that is associated with yet not a part of this board-it shows every variation and stage of every type of reconstruction including those who chose no reconstruction. It was and is so helpful to me and made it all a lot less scary. If you go on the reconstruction threads they will let you know how to get on the picture board. If you can't find it, send me private message and I will help.

yogabeth

Hi Annette,

What is this picture board about? Can you send me the link? I'm considering both a mastectomy without reconstruction, unilateral and the lump/rad/tam route. Thank you! Beth

HardTimeNY

Hi everyone, I am in process to schedule surgery but having second thoughts. Please help me think straight! I have a 3cm node on my right stage IIb w/ lymph involvement. An MRI showed that I have like 0 stage on my left. Initially I agreed with a BMX but now thinking about it I don't fit in the high risk category, should I leave it alone and do only the right side? I still having hard time with the idea of losing my breasts but i think about probability and sparing myself and family to go thru this again. I have only seen a BS and PS. I asked to talk to an Oncologist and do BRCA test Oncotest the BS said is not necessary, if I dont have anyone in the family. After insisting he said that Oncotest is done after surgery. I had to postponed surgery due to another very ill family member, but now I am having anxiety thinking that I haven't done more research or seen more doctors. Please help! Thank you 

annettek

HI Yoga- there is no link to it....send a private message to the user Lilah asking for access. We can't have a link as understandably there are very private pictures posted there.

Good luck!

Lunakin

Mastectomy for multifocal cancer --

Dr. Bernard Fisher is the physician who questioned the radical Halsted mastectomy, and who did the research showing survival rates are the same for lumpectomy as for mastectomy.

Dr. Fisher had an article published in Dec. 2011 questioning if mastectomy is truly necessary for multicentric, or multifocal, breast cancer. Basically his premise is that if the primary tumor is removed, and radiation, or chemo, or endocrine therapy is used, that takes care of it.  Only the primary tumor is agressive enough to send out offshoots. They don't have to get all the cancer cells, and probably can't, since most have been growing for about 6 yrs before being found (per Dr. Susan Love).

His theory fits in with the recent findings that complete ALND due to micrometasteses in lymph nodes did not improve survival rates compared with SNB. 

I suspect that 10-20 years from now mastectomies will hardly ever be done, but too late for me....

Of course, having a mx because one doesn't want to go through yet more biopsies, surgery or scans makes total sense to me now!  

Fisher, B. (2001). The role of science in the treatment of breast cancer when tumor multicentricity is present. Journal of the National Cancer Institute, 103(17): 1292-1298

three17

I have had my bilateral masectomy and I feel great, considering what I went through. I got 800 cc and they are a  lot smaller than my original but perky and look so natural. The nerve damage is driving me crazy and I had an infection develop near the stitch line of my left breast. Now it is on to chemo and I am fighting like hell. 

Momine

Docbabs, you said "At surgery, the pathologhy on the "good" breast came back ALH and LCIS, none of which ever showed up on either mammo ,MRI or US."

I had exactly the same thing. In every scan and test, the "good" breast showed no signs of cancer, but the path report had LCIS and ALH. The first surgeon refused to take it off, but I was determined to be rid of both. Odd how my intuition turned out to be right.

annettek

three17- good luck on your upcoming chemo...as far as nerve damage...give it time....mine is virtually gone now....it was amazing to me when it dawned on me-that's how it worked- I became used to the prickly weird feelings and then slowly it stopped and then it was gone...again, to me, proof how the body heals:)

jg10

Just to complicate matters, you need to think about long term screenings. You will need to be very vigilant if you keep one or both breasts, but might not need such screenings with a double mastectomy. The peace of mind that my double mastectomy afforded me for almost three years of no screenings has been priceless. I also got to skip hormone suppression! Although that depends on other factors as well. Goof luck!!

annettek

Jg- Just an FYI -My BS does an ultrasound (breasts and under arms-lymph nodes) every six-9 months as well as a physical exam of my breasts (reconstructed)-as crappy as it sounds, there is a very small chance, but a chance nonetheless that a recurrence or left-over could pop up- she has shown me how to feel them as well and watch out for any odd lumps