lumpectomy or mastectomy

Ineke254

Just got diagnosed today with IDC tumor 1.1cm.to left breast. I cried once and now, I just want to move on and get this thing out of my body asap.. I have not seen any pathology reports after the biopsy was done. Surgeon recommends lumpectomy but lets me decide if I want to have mastectomy. How can I decide on something like that? Do I want to lose my breast if it can be controlled  with a lumpectomy? He says the rate of survival is the same with or without the mastectomy. Is it possible he takes the whole breast during lumpectomy if it turns out to be more cancerous with nodes involved? Question I should have asked him but didn't think of at the time. I was wondering if anyone went through this. I still have to get an appointment with the oncologist and discuss this further after MRI, scheduled for Friday. I will know more. I am a widow 55 years old and working full time...Thanks for your support

Blacksheep27

I was in the same boat a year and a half ago. I was originally going to go with the lumpectomy, because really why would anyone want to have their whole breast cut off???? But my very kind and compassionate surgeon (female) gave me all the details of both options: lumpectomy wouldn't necessarily leave me with an unblemished breast (because my tumor was at 6-8 o'clock, which meant a displaced nipple at the very least) and I would have to have 6-8 weeks of daily radiation on top of the surgery. I'm retired, but daily trips to get my chest fried was not appealing at all. A mastectomy wouldn't require radiation, and I personally felt that having a flat chest would be preferable to a lumpy breast.The deciding factor for me was talking to three friends who'd had lumpectomies (along with radiation) and within a year they all had to go back and have the full mastectomy anyway, since the lumpectomy didn't catch it all. Like you, I wanted that thing OUT of there, ALL of it, at one go. The odds just seemed better with the mastectomy, and they told me the recovery time (at least a month before you really feel like getting back on the horse again) was pretty much the same for both surgeries.

So, I chose to give up the whole ta-ta and I haven't regretted it for a minute. There was nothing pleasant about any of it (except how supportive everyone was), but I was just so grateful that I was able to skip the radiation (and possible further surgery). I was also lucky enough that I didn't have to have any chemotherapy, and had no lymph node involvement. I hope you are also that lucky. I also chose not to have reconstruction and am basically content living with a breast and a chest.

See what the MRI says. Your tumor isn't huge (try to get past the word "invasive") so maybe your doctor will be able to do a lumpectomy that doesn't disfigure your breast much. Talk to every woman you know who's had BC. There are some web sites (this one, I think, and Susan Komen) that have a list of things you should ask your doctor. Make a list of all your questions before your next visit. Make them tell you every possible scenario, for now and for follow-up. Ultimately, you are the only one who can make the choice, based on what you think is right for you. I wish you all the best. You'll get through it, just stay strong.

lemon68

Ineke254,  I am sorry you have to be here but glad you came here, lots of love and support on this site. I had a lumpectomy and radiation, I had no intention on losing my breast. Fast forward 16 months, I decided I didn't want to go though life with worry, I wanted to lower my chances as much as possible, I did so much research I cant even tell you, hours and hours. I also looked at all options, implants, flaps all kinds of flaps. Seven weeks ago I had a total BMX both sides, my side I thought was good wasn't so good with pathology. I have no regrets and have 2 breasts of my own tissue, I am healing but know I may have prolonged my life and feel empowered, no tears or sadness.

What I am saying is do what you need to do now, get it out. There is time if you choose to go further. You wont miss much work with the lumpectomy, recovery is usually fairly easy. For me doing BMX and immediate reconstruction, I was off work for about 4 weeks, weeks 5 and 6 I worked PT and this week I am planning on FT again. Its a hard decision but its your decision. Read, ask lots of questions until your satisfied with the answers.

All the best to you and a big ((HUG))

sheila888

Ineke.....When i was DX my tumor was 1.2cm and I was 10 months post menapose

My surgeon said definitely a lumpectomy

So 9 years ago i had one... followed by chemo...radiation and 1 year of Herceptin for being HER+

FEMARA for 5 years

Good Luck whatever decision you make

Sheila

Sunshineinky

Ineke, I chose a lumpectomy.  My bc was 1.2cm at 3:00.  I'm currently undergoing rads with a few manageable side effects.  

I took 1 pain pill the night of my surgery and that was it.  I had zero issues with recovering.  

I chose this because my bs felt that this was a good option for me but ultimately left it all up to me.  She said that a lumpectomy and rads are equally as effective as a masectomy and even if I had a masectomy, I could still get a reoccurance.  That pretty much made my decision.  Why would I do something so invasive if I had equal results.  It's truly a hard decision and I'm sorry you're even having to make it. 

Hugs to you! Ps... I cried until I finally asked for pharmaceutical help from my pcp (xanax) I took them till I had my surgery.  

KDLodge

Your Dr. is right about the survival rate being the same. Don't let anyone tell you that a lumpectomy surgery recovery is similar to a mastectomy recovery. It just isn't true.I had a 2cm tumor removed on May 21 and was released the same day and back to all normal activities the next day. With a lumpectomy, you will need radiation therapy for six or seven weeks which you may or may not need with a full mastectomy. You might also need chemo depending on what type of tumor or how you score on a special Oncotype test if your tumor is homone positive. It is your choice but you seem to have a small enough tumor for a lumpectomy without any problems. I'm not a Dr. but it sounds like a viable choice for you. Best of luck and hang in there!

Ineke254

First of all, thank you all for your replies and the support you are giving me. I hope all of you are doing well and living life the fullest:) Here is an update as some changes happened to me after initially was diagnosed with IDC. My MRI came back and the report from the pathologist came back  also. Now, I was told by my oncologist that it is Invasive Lobular Cancer stage 1A and ER+,PR+ and HER-, apparently there was also ductal carcinom in situ  (not IDC) noted on MRI although tiny in the same breast and a small cyst . There was also a finding on my liver during MRI which appeared to be a cyst but needed to be followed up and I went to get chest x-ray and abdominal ultrasound. I am waiting for the results at this time. I am late with responding to all of you, because of my appointments with tests and doctors in the morning and going to work in the afternoon and I am tired, stressed and exhausted. I  feel like I am alone trying to do this by myself, although I get support from my boyfriend but I have the feeling that he does not realize the extend of what is going on. I am still trying to get some clear answers from my oncologist about all the findings. At this time she thinks that a lumpectomy would be fine with hormone therapy. I am scared that the hormone therapy will kill my sex life since I am in a relationship at the moment.  She was talking about Arimidex..Anyone out there who had any problems with that and would share? Another question to ask my oncologist..Chemo therapy is also noted to have a lot of long term side affects, not the short term affects like loosing your hair. Things are moving forward very slowly, partly because of my doctors are going on vacation during this month and getting appointments is like pulling teeth. It worries me literally to death..Also an Onco test was ordered  and sample used would be from my biopsy. I always thought that it would be done during surgery.Thanks again to all of you for your support . It has made a difference to me. At this time I am considering lumpectomy but still waiting for test results...

Denise-G

I had a Mastectomy, Stage 3 - huge tumor.  No choice. 

My 80 year old mom was just diagnosed with Stage 1  -  1.7 cm tumor.  She had a Lumpectomy.  It was out patient and she was feeling good within one day at her age.   Her incision looks great, her breast looks great.   Absolutely no comparison to the healing time the MX took.

I write a popular breast cancer blog and hear from literally thousands of breast cancer patients - the good, the bad, and the ugly.    From my experience, if I had a choice and could have saved my breast, I definitely would have. 

One thing I do notice -- many women regret having a MX when they could have tried a Lumpectomy.  Not all, but many.  My mom's friend had a Stage 0 Mastectomy 10 years ago.

She said not a day goes by that she doesn't regret her decision and wishes she would have gone Lumpectomy route.

 

 

Ridley

A couple of thoughts:

-- you can always start with a lumpectomy and then if you feel mastectomy would be a better choice for you, go back and have a mastectomy.  You might be able to avoid radiation if you have a mastectomy, but that is not always the case (can depend on lymph node status, proximity to chest wall, etc.).  As far as I know, the chemo recommendation is independent of surgery choice, and will depend on oncotype, node status, etc., etc.

-- I would ask your medical team to give you a clinical recommendation.  I had to push my team for that.  I figured that between them, they had over 50 years of experience with breast cancer, and I had a couple of months.  I knew that I had to add on the psychological/emotional aspect of the decision that only I could, but wanted a clinical recommendation from them as a starting point.

I think its good news that you biopsy sample was sent for oncotyping, as that means that you will get the results more quickly and will know what your final treatment plan is. 

I ended up having a lumpectomy first and then a bilateral mastectomy (one side based on the team's recommendation and the other side based on my own decision.)  No regrets, although admittedly, its early days.  Like Lemon above I had flap reconstruction.

Best of luck with your decision.

Ridley

PS -- I have never heard of anyone consent to a lumpectomy (which is sometimes described as a partial mastectomy) and come out of surgery with a full mastectomy.  Generally, they take out the lump and some surrounding tissue, and then test the edges for cancer cells to determine if the margins are clean.  If not, often they can do a re-excision and still not have to progress to a mastectomy.

Anonymous

Ineke254: The important thing is to take your time, do research, and don't ever regret your decision.  This sucks and no answers will be "perfect" (we can't turn back time, for example). Everyone who is lucky enough to get the option of mastectomy versus lumpectomy, chemo or not, etc. - makes that decision based on a TON of information.  It's science, yes - but it's not exact.  And our own individual needs factor in heavily.

MY decision (I had a similar diagnosis) was to have a full mastectomy.  I did not want to go through it twice.  And there is good and bad to any decision.  I was able to avoid radiation (can have long term effects, just like chemo does), but I also did not want reconstruction (I didn't want to have to worry that pain was the implant), so now the worst part is that I'm "lopsided."  I decided, if I was going to have a big dent in my breast, I might as well take it all off.  With a T-shirt collar or higher, and a prosthesis, you cannot tell I've had surgery. But I didn't know how hard it would be to wear most "normal" clothes. I've considered taking the other breast off too, but I haven't done that yet.

Also, the day before surgery, I got an MRI for exact measurement even though I'd already said I wanted a mastectomy.  It turns out I had another, smaller, tumor near the chest wall that hadn't shown on mammo or ultrasound. So, without that MRI, and with a lumpectomy, it might have been missed. 

I was not given a choice about chemo (I don't think...I was very confused even though the onc recorded the session).  I did not have any oncotyping. But I did end up quitting after one chemo treatment (long story).  When I got a new onc, she said the hormone therapy with my dx was more important than the chemo anyway (and, yes, that hormone treatment can have long term effects too).  I wish there was a way to just erase all this, but there isn't. You'll have so much thinking and deciding and reading and research to do. This site is GREAT (as long as you take every post with a grain of salt).  I wish I knew about this site before making my decisions (though I'd probably do it all the same anyway). For example, when I quit chemo, I didn't know that some with my dx didn't have chemo at all.  I got a LOT of flack from family and friends-"But...don't you HAVE to do EVERYTHING possible"?  they would say.

Best to you in your decision.  It will not be easy.  You will think of little else for awhile.  Once you've decided - try to be at peace with it. 

Brenda

Ridley: I asked my surgeon about whether or not I could say "do a lumpectomy unless you think I need a mastectomy while I'm under," and she said she would NEVER make the lumpectomy versus mastectomy decision based on what I said before I was anesthetized.  Patients MUST tell what they want done.  When I went in for my surgery, they told me to mark the appropriate breast with a marker with an "X".  I made a smiley face instead and they were NOT amused.  They made my put an X instead.

Ineke254

Anyone out there waiting as long as I am for surgery? It is driving me insane..I have had tests done from the beginning of May 2014. Doctors are on vacation and I feel I am going to loose my mind. What do they know what is growing inside my breast and the option of lumpectomy versus mastectomy ? I have an appointment with the surgeon next week..I expect him to tell me that surgery is to be done maybe in the middle of August...! (months later from the time something was found) Last appointment I had with him was middle of June....I might need a mastectomy after all with all this waiting.My surgeon is on vacation and my oncologist is hard to get on the phone as she has other offices to attend to. Changing doctors is no option at this point as they let you wait at least a month before they can see you as a "new" patient.. I am getting worried..not to mention the sleepless nights I have and the countless hot flashes..still waiting for the onco type test...well, I guess I am going insane...

incognitomom

Ineke254,

Thank you for starting this post. I'm somewhat in the same boat with lumpectomy vs. mastectomy and I am changing my surgeon and am worried about how far that will push my surgery out. The wait is horrible and I worry about it spreading to my lymph nodes while I wait.

I'm sorry I don't have any advice, but I can join you in the crazy place

HM

VioletKali

I am choosing a bilateral mastectomy even though I qualify for a lumpectomy. I have breast implants and I am 32, both of which affect my decision. Please allow me to explain a bit.

A lumpectomy for my situation would require RADS therapy. A lumpectomy would create significant imbalance with my breasts, and I would eventually desire to have them re augmented for symmetry. Augmentation or re augmentation on skin and muscle treated with RADS is very complicated due to the changes which occur with the therapy. Skin and muscle changes make it more difficult for the plastic surgeon, and affect final esthetic outcome. This is one aspect I considered, which is not an issue for all women.

My lump is on my L side, which also happens to be where my heart is located. As a Nurse I know that try as they might, my heart or lungs may be affected. They can aim as best as they can, but I have to take into consideration that RADS will definitely affect me in ways I am not comfortable with. I am 32, so that is an extra long time for cellular changes to pop up. I have asthma too, so I need all of the lung function I can have.

It is all very personal, but these are my reasons. I am choosing to not do RADS even if they recommended it, so a mastectomy makes sense in that respect too.

anastasia31

Ineke254: I am so sorry you are having to go through this.  These decisions are never easy.  Two years ago I was diagnosed with DCIS and microinvasive ductal carcinoma.  Had a lumpectomy and rads.  Two years later its back and it's IDC.  So now I am faced with a mastectomy (no choice).  In retrospect, knowing what I know now, I wish I had a mastectomy in the beginning.  I would have avoided having literally 10 mammogram pictures for the wire placement prior to surgery plus 6 1/2 weeks of radiation.  Plus 5 months of arimidex that increased my estrogen levels instead of lowering it.  Now I am trying to decide if I should go ahead and have a bi-lateral or not.  (No more mammograms ever!)  You know what they say about hindsight.  One of my doctors was surprised that it was back and that the radiation didn't take care of it.  But based on some of these discussion threads, sounds like it is not uncommon.  Best of luck to you.  

Ineke254

First of all, I wish to thank all of you who took the time out to reply to my "insanity"..Thank you, to Harrysmom for joining me in the nut house..I hope you are making the right decision and I know it is the hardest thing ever. I don't know anymore if the doctor wants me to do the lumpectomy because he has a "let us see" approach and in case something else is found well; he can still proceed with the mastectomy sometime later. Be it months or years. Do I want that to happen? I have good insurance at the moment and might not have it in the long run. I don't know what the thing is with Obama healthcare.Well, I have not entirely made up my mind on getting the lumpectomy versus mastectomy. I am leaning towards the mastectomy because of my diagnoses of the lobular invasive type which is more difficult to detect. Also the MRI showed a "beningn appearance lesion" What ever that means. At the end of the report it states that a normal MRI does NOT include the presence of DCIS, invasive lobular cancer or cancers less than 3mm...Well, that pretty much tells me that I am in for the ride of my life the next few years if I decide a lumpectomy...I am worried how this is going to affect my work as a nurse regarding the heavy work load....By the way, several of fellow nurses that I worked with have been diagnosed within the last 2 years with breast cancer. I also know that all of them ended up with mastectomies. I have a doctors appointment next Monday with the surgeon. I will have to decide and I am not going to wait any longer. I am worried about the side effects of the hormone treatments and radiation.

Hang in there, all of you! By the way, as a nurse the only advise I got from my fellow nurses was: "if I were you I would get the mastectomy bilateral and I make sure I get some nice boops...haha..maybe I should look at it in a more positive way although I am aware of the complications that can arise with implants...and the long road with lumpectomy..

VioletKali

What a small world, I am a Nurse too!

Rosiesride

ineke254....one of the hardest decisions to make!  I had ILC, 3/11 positive nodes...had lumpectomy with clear margins...surgeon gave me all options before surgery...talked about bilateral and getting nice boob job...that was so not me...a flat chested hippie girl my whole life!  I knew I would need chemo and rads no matter which surgery I had...I researched a lot the 6 months of chemo and knew I needed to make a decision to keep my lumpectomy or not before rads began...got 3 opinions from different surgeons...

I finally came to the decision to keep my lumpectomy...get all the treatment ...for me, I wanted to get my life back and couldn't think about more surgery when all the opinions stated the same as your doc said about lumpectomy vs mx...it comes down to what you can live with and peace of mind.  Will I be able to live worry free? Probably not, but if it gets to be  where I am worried too much, I will revisit dbl mx without reconstruction...best of luck on a hard decision which only you can decide what is best for you!! Rosie

MomtoIrishQuads

Hi - I'm so sorry that you are facing this.

If it were me (but I'm not) - get the lumpectomy and then decide what to do.

I've had two lumpectomies - and they honestly are a walk in the park.  Out patient surgery - I didn't have a lot of pain.  I went on to have a partial mastectomy and that was a bit more recovery time - but not more than a week or two.

After the lumpectomy they can analyze the tumor (with oncatype where they analyze the genetic structure of the tumor - amazing stuff!, etc) and then you will have more information to decide.  Just view it as a biopsy.  But yes, I'd push those docs along and get it done pronto!  There is no earthly reason why they aren't doing it next week!  Where do you live?  Does it really take that long?

I had a second occurence 3 years later (in May) - and my first reaction was "off with them!" - I even had the mastectomy scheduled - but then I took a breath and realized that it was in the other breast and I decided to give each breast one chance before I took them off.  But word to the wise, if you go the lumpectomy route - insist on frequent and regular MRI's (not just mammograms) to spot anything else that might be growing - I'm so glad that I did that.

Good luck with whatever you decide - oh - and you might also think about doing a partial mastectomy / and a free boob job as part of it.  For me - it was a big esteem booster!  So - they got really good margins by taking more than a lump (if you have enough - after breast feeding 4 kids in 20 months I looked like a Zulu tribeslady!

Deb

Ineke254

What is coming...I decided on lumpectomy with radiation on August 5...surgeon told me that if more is to be found, be it during surgery or at a later time, a mastectomy can be arranged to be done but in the meantime not to go the "draconian" way as my cancer "appears"  to be in early stages...

Work is keeping me busy and exhausted...taking off from work for several weeks with family leave act..

Thank you to all of you for your input and support... and take care and stay positive....I will update from time to time..

Anonymous

Feels better getting past that decision-doesn't it. Now you have a plan of action and a goal.  That's a lot off your mind already. 

ncollett

I had a lumpectomy July 30 lymph node clean but margins not. So I have to go back for more surgery. Not what you want to hear a week after you just had surgery. I am trying to decide what I want to do this time around as well. Do I go ahead with a second excision or do I have him take the entire breast and avoid the rad side effects that come with left sided breast radiation? Not sure what I want to do yet.

SandyLovesLucy

ncollett, I'm sorry you are faced with this decision.  I had a lumpectomy with no node involvement and didn't get clean margins. Definitely NOT part of my plan about how things would go!  My surgeon and I decided it was worth one try with re-excision and it worked out.  If I had chosen to have a mastectomy I would probably still have needed rads because of the location of the tumor. I hope you have good communication with your doctor and feel comfortable asking lots of questions so you can come to a decision that feels right for you.  You'll be in my thoughts.  Good luck!

Hugs,

Sandy