Topic: Lumpectomy vs Mastectomy..can't decide

Somanywomen:  I can relate to the agony!  My breast surgeon presented me with both options at my diagnosis. After, I did a lot of reading from reputable sources, gathered statistics... talked with people.  I ended up with a lot more questions pertaining to the choice for my specific situation. I scheduled another meeting with the surgeon to ask all my questions.  Took detailed notes.

Since then I have also had an MRI.  My BS told me that the results from that will determine whether or not I truly have a choice or, whether there is more cancer and I need a mastectomy. I will meet with her again on Tuesday.  Surgery on Thursday.  I am 3 weeks out from Dx now, and I can tell you I went back and forth a lot in the early days. Then after a week or so, I became more resolved in one direction.

It is a very personal decision. I happen to be a research-oriented, analytical type of person, so I really needed to understand all the angles.  Some people go more by instinct.  But as I have always told my kids, "if you can't decide, it's probably becasue you don't have all the information."  Take as much time as you can to get that information and absorb it. And all the best to you -- we will be undergoing surgery within days of each other. We'll have to keep in touch!

PM if you wish - I've collected scads of links etc.

Thanks LISAMG and Luah, I think that I lucked out as far as surgeons go, I can't tell you how much of a relief to have faith in him is....I have never had surgery before....I have been scared to death before from MRI showing a possible brain aneryrism, following MRI a year later, it could not be found...Same time a CT scan showed spots on my lungs another year of scare with followup showing the spots got smaller....Thought I was good to go until this DG...my doctor said it was invasive and he will know the stage after pathology during surgery...He let my husband and I stay in his office as long as we wanted and told my husband that he was going to get me well....When I asked him what he would do for his wife, he said with my circumstances he would tell her the same as me...It is my choice....He did explain thoroughly each procedure and after the procedures of each.....Lis, I do have an aunt that had a double mastectomy about 20 years ago with no following problems, she is in her 80s now.....But besides her and I of all my female aunts, cousins and 2 sisters, I am the only other one that I know of....Luah, can MRI's really show more as to staging?..I guess we all turn into not so happy experts at this topic we now find our days being so involved with....I wish you the best of luck on thursday with what you have decided and please keep me posted on how it went.....thanks very much for taking time to post back to me......

Somanywomen: Sorry if I misled: no, an MRI generally won't help stage (although it may accurately detect tumour size and that certainly may affect staging).  In my case, the BS wants to see if there is anything else going on in my breast that hasn't been picked up by U/s or mammo. For example, if it detected other tumours (I have 2 already), that would rule out lumpectomy. That's all I meant.  

Hi Somanywomen,  I am so sorry about your diagnosis. You have a huge decision to make. I can share my reasons, hope this helps!

I did not arrive at my decision until I had spoken to three different doctors. I did not get positive feedback from the first two.  I am a worrier so I opted to have both breasts removed with immediate reconstruction.I was also afraid that I would have a mental breakdown if I was disfigured from the lumpectomy. That along with the fact that I was afraid to have radiation made the decision easier. I did not achieve peace until the surgery was done. My pathology report came back promising, I had no Chemo, or Radiation,I was perscribed Tamoxifen but my oncologist said I had a great prognosis without the medicine. I am happy now with my decision. I hope someone gives you the words you need to make the right decision for you! I pray for a good pathology report for you as well. Hugs!!

Maybe you need to know the size of the tumor, and sentinode procedure to identify if spread to any nodes to identify staging?  Read the forums for the procedures mastectomy versus Lumpectomy and radiation.  It might help you get a perspective on the procedures, outcome and living with the decision.  There are newer radiation procedures now offered for shorter treatment time. You need to explore how you might feel following a particular treatment path.  Sorry you had to join us - but we will try to help as best we can. 

When I was first diagnosed, I was only looking at having to have a lumpectomy.  It was recommended that I have an MRI to make sure there were no other abnormalities in either breast. The mammogram only detected the first lump.  It was the MRI that determined the need for a mastectomy for me.  As a result of the MRI, a second growth was detected in the same breast. 

Somanywomen - like you, I flip-flopped.  I actually called my surgeon's office and gave him my definite decision THREE times.  Ended up doing lumpectomy, then had a re-excision to get clean margins, then mastectomy because he STILL couldn't get clean margins ... and found more lobular cancer in the removed breast tissue. 

 Looking back, I'm glad that I started with the lumpectomy so that I don't have any "maybe I could have saved the breast" regrets -- but I'm also glad that I eventually got the mastectomy so I don't have any "maybe I should have had it all off" regrets. 

Best wishes to you in making a decision.  Once you get started on a treatment process, things will be less confusing.

somany

I had a lumpectomy-- with radiation and chemo--my surgeon never suggested a mastectomy--then afterwards told me I really wasn't a candidate for it.... she got clear margins 1st time out and we knew from the mri that there was nothing else in the breast and it had not gone to my nodes.....

 It really is a personal decision, but base it on your own data as you collect it.  I have friends who had mastectomies and still had to do chemo and rads--others who didn't--some who had lumpectomies, followed up by mastectomies, some with lumpectomies who are just fine...

My tumor was isolated, free floating--- the surgeon was very clear that a lumpectomy was the way to go, and from what I had read-I agreed.... bottom line for me--my oncotype was in the gray area, so I would have chosen chemo either way.... I am almost a year out-- you cannot even tell I had surgery (I am a d-cup and my breasts still appear equal in size)--- I am happy with the decision that we made---but again, it was based on all of the data we had at the time about my situation --- as you gather more information, the decision will become clearer.

carole 

So sorry you are having to go through this.

 One point is - if you have fairly small  breasts, that MIGHT make a difference to the business of getting clean margins (i.e. an area around where the tumour was that is clear of any disease). A big lump in a very small breast might make things more difficult.

I am extremely happy with my lumpectomy and confident for the future.

As I am Grade 3 (and some other factors) I am doing chemo and will do rads.

In the UK where I live, only 20% of operations are now mastectomy.  Our survival rates etc are equal to the USA . 

It will not matter if you need to wait a little longer while you gather all the info together to make your choice.  Things are not time critical if you wait a couple  of weeks.  Whatever you decide is the right thing for you.  It takes a consderable period of time to interpret the statistics available, and be aware that some of them are now out of date.All theof luck on this journey, and warmest hugs

xxxxxxxxx

 wow...London-Virginia...your 20% mastectomy in Uk is very surprising to say the least!!!...My doctor told me the survivor rates are same for both proceedures....It's my mental state that has me so confused as to which I could deal with, I wish I had a crystal ball.....I guess the thought of the margins coming back with not so good results and having to go back and possibly having more surgery is not something I would not want to deal with, then again they might be clean and I would still have my breast.....I just don't know....thank you, it really makes me wonder why the US statistics are so much higher in favor of mastectomy....

Luah, 

 Like Somanywomen I am  facing the same decision.   I am one of those people who need to see the data and look at my options from every angle.  Would you please send me the links that you have collected as well.  Thank you. 

Hi Somanywoman,

So sorry you have had to face these decisions! My best offerings to you follow from my own exprience I guess:

First, I think it is so awesome you have found a surgeon you are extremely comfortable with! This is huge in my book. I didn't have that. If you feel it, found it, know it, I say power to you-own that for sure...

Second (I initially was in the same circumstance), I will spell out my experience, because I found for me it helped better to start working up my own studies from others experiences. No matter how many books I read, or statistics I perused, I still wanted to believe sometimes that certain things wouldn't happen in my case, so for me - it was the best case scenario that got me to make the decisions that only I could make...

 I was diagnosed with breast cancer after a diagnostic mammo and stereotactic biospy at Stage 1 ( approx @ 1cm) with both DCIS (Ductal Carcinoma Insitu) and IDC (Invasive Ductal Carcinoma) in the left breast. Immediately following I was sent for a chest x-ray, MRI, ultrasound, and blood work. An extra MRI was needed because they saw another suspect area in the same breast, which turned out to (hopefully) be ruled out as hormonal. I learned that if another area materialized as more cancer, I most likely would have solely been given the option for mastectomy. However, I was left at that time to decide between the lumpectomy and mastectomy based on those test results, and what docs believed to be the initial projected size of the tumor. I was so worn out trying to learn everything fast, and I just couldn't fathom losing my breast.  I also tested positive for the BRCA2 gene mutation which added a whole other layer of sickness in my heart. Most doctors were now truly only advising me to have the mastectomy.

Even gene positive I couldn't make that decision (I suck) , and since I needed to at least try to get the cancer out, and was already behind, I went with the lumpectomy in June. The lumpectomy left me with more knowledge about my cancer... Not exactly the knowledge I was hoping for, or preferred, but heck! Suppose that was the way it was gonna go for me :) They were unable to get clean margins, it had spread to a lymphs node, was bigger than initially thought, and was now actually classified as a Stage 2B cancer (based on size, spread. etc). Because they couldn't get clean margins, we know that the size is definitely over 2cm and expected to be under 5cm (what was removed so far falls in at around 3cm). My surgeon also noted that the biggest area she removed was not even what really showed in the images, which is kinda the scariest to me.

From there I went into chemotherapy (due to the spread, and age), which I just completed, and my mastectomy was now finally just scheduled for next month. The reason they did not and are not going back in for clean margins with me falls into a few categories: First, as I already stated, I am gene positive, so it is well thought that I am already high risk keeping the breast tissue in both breast. Second, I am pretty small chested as is, and once they remove tissue from the breast - you can start to become more deformed cosmetically, so you get viewed as someone that should probably choose the mastectomy anyway. I can't remember what the exact percentage tissue removal is, but my surgeon felt I was already at it, and pretty unwilling to try to get clean margins after the first lumpectomy.

 There are all sorts of reasons people base this decision on also in regards to possible treatment from chemo to radiation, and reconstruction options etc... But I just thought to share a little bit of my actual experience so far. Hopefully it helps.

Wishing much luv to you and in your life along this journey -

~b

Thanks to all of you, we have so many stories don't we?.....I think..I think...I think I am coming to a decision....My husband says he will love me the same and I know my dog will....I think I will probably love them more....My eighteen year old son wants to know if I will still cook dinner, he's a funny kid and will hide most of his feelings...My married daughter, whom I have not told  (it was my granddaughter's birthday week and just not the right time) will freak out...My mother will also freak out and tell every relative, friend and neighbor  of my condition and make it ever so much worse for all....My friends want to come over with a big bottle of wine....My sister has known from day one, has been calling me constantly, she could not give me a clear answer of what she would do and she is a nurse.....I have bought 2 "zip up front"  bras (I can not imagine trying to pull on over my head bra after surgery, that's gotta hurt!), the nicest most comfortable that I could find was at JC Penny (called "Underscore" athletic type, in bra dept. gray and a white one about $20. if you are in need check them out)....I will be calling in my decision in the morning along with a list of questions from many of the information that all of you have been so kind enough to share ...I will also be trying to see an oncologist this week..My surgery is scheduled for the 19th.....I am sorry all of you are also on this cite, but feel lucky that it is a cite where we can learn and just feel so comfortable being able to have a sounding board....I plan on staying with you guys to give and accept any support we all can give or receive...thank you sooooo much and stay well...............

CAROLMARIE427..At this hour, I am leaning towards single mastectomy for mental and physical reasons and do you know, I haven't even thought about my other breast, my surgeon didn't even bring it up....That is something to consider and maybe my meeting with an oncologist this week will have some advice for me....You are right about what decision we think we can handle out of the very different mentally and physically terrible choices...But we have no choice but to choose...thank you for being here to share as the others, it does help.....

Hi. I had the choice of lump. but chose mastectomy with immedicate reconstruction. Boy am I glad I chose the mast, rather than the lump.  After pathology, we would have found out that the lumpectomy was not enough - that there were cells not picked up on MRI or Mammo that are only found through the physical path.  What initially was supposed to be DCIS turned out to be much more than that, including my nodes - get the node biopsy!!  Really, this is your life!  

In the meantime, I am struggling with my "good" breast - considering that too - in my heart, I dont trust my other breast, so now I am going down that path....what to do? I didnt approach that at the time, but I wish I had. Seriously, this is so uncertain. While everyone wants to be optimistic, I believe you have to protect yourself from all angles.