How to decide...lumpectomy or masectomy?

momacita55

What a way to start of the new year:(  I was given the news on 1-11-11, that I have breast cancer.  It is IDC and is 1.1cm Grade 2, located at 6 o'clock on my left breast. My ER was +98%, my PR was +58%, my Her-2/Neu was 1+, and my Ki-67 was 18%. I'm 58 and post menaposal. I have met with the BC and the oncologist but not a PS.  My initial thoughts were to go with the lumpectomy and the radiation.  But then I started hearing and reading about all of the 1st surgery lumpectomies that turned into 2nd's and then masectomy's!  I just don't know how a women is supposed to make this decision!!!!  I don't want to do any unneccessary surgeries, but I sure don't want the cancer to return either!  What if I do a bilateral masectomy and the reconstrution implants at the same time, am I reading that there are follow-up surgeries to this process too?  I know I will have to have chemo, but does one procedure have better results than the other? I know that no two women are alike in recovery or how they handle the pain and therapy, but is there any ONE thing you could tell me that would tilt the scale as to which type of surgery has the best chance of defeating the cancer.

My prayers go out to all of you!

jeanette41

!.1 cm is still pretty small....if it were me I'd try the lumpectomy. I had a a 2.5 cm mass that was removed by a mastectomy in October, and I am still struggling. Was doing pretty good, but chemo seems to have aggravated things a bit...

There are many risks associated with the mastectomy too, like Post Mastectomy Pain Syndrome....my doc never brought that up.

nikola

As soon as I heard I had BC I knew I would go for double mastectomy with DIEP. My reasons: being premenopousal and highly ER/PR +, 6-year old son, mammo did not discover it but me.

Even BS was surprised because my lump was not palpable in all positions. After mastectomy was done pathology came back with not one but three cancers in my right breast and my left breast was mess. I do not have any regrets.

I would go in couple of months to remove some dog ears on my hips and to reduce a bit left one but none of that have to be done.

I was recovering 12 weeks, stayed in hospital 6 days.

Beesie

"My initial thoughts were to go with the lumpectomy and the radiation. But then I started hearing and reading about all of the 1st surgery lumpectomies that turned into 2nd's and then masectomy's! "

Yes, that can happen.  And if you read this board, it might appear that it happens a lot.  But really, in most cases where women have lumpectomies, it turns out that the lumpectomy is all they need. And most women don't have a recurrence.  The women who have lumpectomies and who don't have recurrences don't usually hang around this board for much time after their treatment is over.  So you may see fewer of these women here.  But they are actually the majority. 

As jeanette said, a 1.1 cm mass is quite small, and hopefully if you have a lumpectomy, you will have large clear margins.  Margin size is one of the most important factors in recurrence risk - the larger the margin, the lower the risk.  So if local (in the breast) recurrence risk is your concern, talk to your doctors about the difference in risk between a mastectomy vs. a lumpectomy with good margins + radiation.  You may be surprised to find how little difference there is in the recurrence risk.  Additionally, keep in mind that the choice of surgery has no impact on distant recurrence risk (i.e. outside of the breast, mets).  This is the more concerning risk and having a mastectomy won't affect this risk at all.  This is why the survival rate is the same for lumpectomy and mastectomy.   

Keep in mind too that a mastectomy with reconstruction is major surgery, usually more than one surgery is needed, there is a risk of complications (which could result in additional surgeries) and the changes to your body will affect you for the rest of your life.  Reconstructed breasts are nothing like real breasts.  The don't feel the same and they don't have the same feelings.   

All this is not to say that for some women, a mastectomy is a better choice.  For some of us, we don't even have a choice - we have to have a mastectomy.  That was my situation - too much cancer in a small breast.  For some women, a bilateral mastectomy is the right choice.   

It's smart to consider all your options.  But if your instinct tells you that a lumpectomy is the right approach for you, and if your doctors agree that it is a viable and reasonable option for you, don't question yourself because of what happened to other women or because of what someone else did.  Make the decision that is right for you, whatever that might be.  

hopefulhealing

If you have dense breasts I would request a MRI before I make a decision to know if there is other cancer there. I had a small less than 1cm tumor found on digital mammo and ultra sound. I decided on a bilateral. One being prophylactic. But after the final pathology they found LCIS in both breasts and the tumor which was IDC on the left and also DCIS on the left. My oncologist said you made a bold move to do both but now seeing the path report it was a good move.

 Look at the issues related to radiation as well. Then as others have said in your heart having all the information you will be able to be at peace with your decision. You may want to look at some resources from a book store or library to help you make your decision. If you go on line make sure you go to reputable sites. Your doctor may have a breast cancer book as well, mine did and I read it cover to cover before my final decision.

Lowrider54

Hi momocita

It is a personal decision - just make it as informed as possible.  In 1999, I made the decision to have a modified masectomy - now they call it skin sparing and had an expander placed by the PS at the same time.  I had 25 nodes removed and was fully positive in 4 and just spreading into the 5th.  It was the good choice for me as the tumor was 3.3 cm (felt bigger than that!) and was in my nodes. 

Just do your research - and having a breast MRI would not be a bad idea either if you have dense or lumpy breasts - do what you need to in order to make the decision feel right for you.  It is small and if they get clear margins, that would be an optimal choice.  Sadly, there is no way to tell prior to be sure they will get clear margins which is one of the reasons I opted for the masectomy. 

I wish you the very best and sending helping karma your way - ask the Lord to show you - there is amazing power there...LowRider

cheshirecatsgrin

um for me i was take them, just get this mess out of me. and now i wish that i had been more forseful and made them take the other one too.

why ? because i never ever want to have to deal with this crap again , yes i know i can get it coming back in other areas as my cancer was just about to spread.

also looking at pics, speeking to people who have had lumpectomys , it just sounds like more of a hassle ,(yes i know every one is different) as most of them get infections and then they have to go back in some times.

i was at a work shop talking to a lady and she had her op the day after mine , and 2 months later she was still in pain and had infections and i was all healed.

yes it hurts bad at first but at least i know that the cancer is gone and they can get a expander in there and make the new ones look good rather than putting a patch over the "hole" .

hope that makes some sence , just had some pills and the make me a little funny

ruthbru

A very personal decisions but if you have a choice, and aren't sure; then I'd go for a lumpectomy. You can always change your mind with it later, but once your breasts are gone, they are gone forever. I had a lumpectomy and am very glad that I went that route. I have friends who did the other and are still dealing with masectomy/reconstruction issues years later. Best of luck! Ruth

Bren-2007

Wow .. this is a tough decision. Although, I made my decision in two days.  I went with a lumpectomy and radiation.  My tumor was small and I had wide margins on excision. 

I am so happy I went with this choice.  I did not want to lose my breasts or go through reconstruction. 

I was 51 at the time of my diagnosis .. and 3 1/2 years later, I have no regrets.  I only had one surgery and healed pretty quickly.  Radiation is tiring, but doable.

Best wishes to you in your decision.

Bren

jillyG

I am happy I got my mastectomy (well, maybe happy is completely the WRONG word, but you know what I mean!) because I had a lot of areas of DCIS in there as well as the IDC tumour and none of it showed up on scans.  I was 33 and found my IDC lump myself but they didn't know about all the DCIS in there until the pathology from the mastectomy came back.  I feel like I made the right decision for me.  I'm not a fan of lumpectomies but that is completely based on my own personal experience and I am sure there are thousands of women who get a lumpectomy who never deal with cancer again.  Good luck with your decision. 

rakulynda

This is such a difficult decision!  My husband helped me to decide which way to go when he asked the

BS, "if she (meaning me) was your wife, what would you tell her to do"  Very simplistic but it helped me make a decision.  Best wishes to you.

mdg

First of all I am so sorry you are faced with this choice as I know all too well how bad it stinks.  Hugs!

This is such a personal choice.  I don't want to in any way influence your decision, but for me I decided on BLMX with immediate reconstruction with TE's.  You can see my stats below.   The main deciding factors for me were:

age - I am only 45 and have a young son age 4

I don't ever want to hear "you have cancer" again so I want to be as aggressive as I can now

Once you have BC in one breast you are twice as likely to get it in the other breast

Survival rates are the same for lump+rads vs mastectomy, but recurrence rates are NOT the same

I chose BLMX because I am smaller chested anyway and I was worried I may not get good symmetry with one real and one foob.  I have always wanted to be a little bit bigger in the chest, but would never have considered augmentation (just not for me though I know lots of people that have done it).  I was not a candidate for any flap procedures as I am too thin so it would be implants for me anyway.  It just seems to make sense.  I found a really good PS that I have faith in. 

You have to decide what is best for you and we all know how hard that decision is.  Just remember there is no "right" decision, there is only "your" decision.  That is all that matters.  Good luck!

tpcjkk

Just wanted to add my story...

I am 43.  A year ago, I had a 2.5cm lump and elected lumpectomy, even though I have small breast (A cup).  Yes, my right side is definitely smaller than my left side, but with a padded bra, it is not noticeable.  I elected to go with lumpectomy upon my BS's recommendation.  I mainly did this to preserve as much as my body as possible including sensation in the breast and surrounding area, decrease the recovery time, and I thought a one-sided reconstruction might not look good and I wasn't ready for bilateral MX.  My reasons for doing so probably don't look that great on paper, but I am happy with my decision.  I told myself that if there was any sign of "trouble" in the future, I would definitely reconsider a bilateral MX at that time, but I just had my yearly mammo and nothing looks suspicious.  

Also, I had two radiation oncology consults to try to figure out whether a MX would allow me to skip radiation.  Due to the location of my tumor being at the base of my breast and close to the chest wall, I wasn't allowed to skip.  I'm not sure I would have gone with the MX to avoid radiation if it was an option; just adding that in, in case that makes a difference to you.   

Anonymous

13 months ago I had a lumpectomy. I'm glad I did. My BS wasn't sure if she would be able to do a lumpectomy or not due to the size of the cancer. I left it in her hands. She was able to save my breast. If the cancer comes back I'll deal with it somehow.

Rennasus

I am going with a BIMX on FEB 3, because I am small-breasted and they have to remove the nipple to get rid of the mass so I would be left rather disfigured. That means a mastectomy on the right side. So I decided that if I am doing one, then I want both done — because they will match, and because I don't want to go through the worry of getting cancer in the other side. I do have family history (my sister had a BIMX 25 years ago and is healthy and alive) so I felt more comfortable making this decision. Also, my husband's first wife died of breast cancer, and she had a lumpectomy first, had a localized recurrence within a year, then had a mastectomy and a few years later it found its way to her spine. I know every case is different but I'm trying to cut my losses. Am also having immediate reconstruction, that part seems to scare me more! I want them to look natural. FEB 3 can't come soon enough!

bdavis

Good question... lumpectomy or mastectomy...

I am driving myself crazy. Twelve years ago I had a lumectomy that came back as ADH. This past year, I was diagnosed with IDC and had another lumpectomy, am undergoing chemo and have rads and tamox planned for the future. BUT my pathology from this lumpectomy shows adenosis, florid hyperplasia and microcalcifications (in benign ducts)... plus a biopsy from my MRI showed pappillomas (fibroids).

Am I just waiting for re-diagnosis?? I am not sure I can live like this, wondering and waiting  for another cancer to crop up... Has anyone been in my situation and had a mastectomy?

Path report from 12 years ago specifically says " atypical ductal epithelial with focal apocrine features. Ductal hyperplasia is favored"... and the path report from the needle biopsy a month prior said "breast tissue with cystic changesm adenosis, florid duct hyperplasia, apocrine metaplasia, mild periductal chronic inflammation, focal fibrosis an focal lactational changes within a lobule."

And that hyperplasia turned into cancer in 2010... and as I said my 2010 path report said there is still florid hyperplasia and microcalcifications in benign ducts... and I have read that hyperplasia is VERY similar to DCIS, and without removing it all, how do they know it isn't DCIS?

I need to decide BEFORE radiation in May... am very worried about reoccurrance.

SassyKat2Him

I was in a fog when I was dx'd. The tumor was small and found during an annual mammogram. My Dr. never asked me what I wanted to do he made the decision to do a lumpectomy and I followed whatever he said. My breasts were very large and my PS did a breast reduction to minimize my risk of recurrence. They did end up having to do two surgeries due to the margins being larger than they first thought. I also had chemo and radiation. That was 3 years ago and I'm taking my Arimidex and seeing my Dr. and so far everything has been fine. Even though I was not asked for a decision I am happy with the result and I do believe I would have made the choice of a lumpectomy.

I've been browsing this site for quite some time and have found it to have very valuable information for anyone who has or is going through BC. One bit of advice is to try not to second guess your decision. There are so many women on here that have been through almost every experience, you must not let it frighten you. The lady that posted way up ahead of me, Beesie, gave excellent advice! Sending prayers that you will know in your heart which choice is best for you. Good luck.

nana3

I too was diagnosed on 1/11/11, I'm 57 and had a mastectomy 5 days ago. so sar I'm ok, healing but it really isn't as bad as I thought it would be. Good luck with your decision and keep us informed..IDC, 2.3cm, stage IIa, ER/PR+

ChrissyMH

(This is apparently the correct board for my question - I deleted it from the original board.)

Hi all,

Can you help me?  Back in October 2010 when I was diagnosed, I knew NOTHING - and did not challenge my surgeon's strong recommendation for lumpectomy.  Now, knowing so much more and about to have my 4th/final TC infusion on February 4th, I want a bilateral mastectomy without any reconstruction.  I cannot bear the thought of a future filled pretty much daily with fear of mammograms, MRIs, biopsies, and all that they imply.  The biopsy that led to my definitive diagnosis was savage.  It was like surgery fully conscious.  Does wanting BMX make sense?  How much pain and recovery should I expect?  Will there have to be drains on both sides?  If so, can I take care of myself?  Will insurance pay for mastectomy in the breast that didn't have cancer and in the breast that they already paid for a lumpectomy on?  Any info greatly appreciated.

ruthbru

Give yourself some time to heal both physically & emotionally before you make any drastic decisions. Unless you have something genetic going on, your risk of recurrence or a cancer in the other breast are really very low. A mastectomy is major surgery with all the risks, pain, potential SEs, recovery time etc. of any surgery, and life long issues, both physical and emotional, of its own (and if you want reconstruction, then you have a whole other set of issues/surgeries to deal with). Read some of the mastectomy and reconstruction threads for more specific information, but don't jump into anything. Best of Luck! Ruth

Pessa

One year ago I was dx'd with a 0.9 cm IDC, one month after a normal, routine mammogram.  I found the lump.  Initially had a lumpectomy but was found to also have 8 cm DCIS.  At that point, I decided to have a bilat mastectomy (had 2 separate surgeries), given that neither the mammogram, nor the ultrasound nor the MRI saw the DCIS, only the .9 cm invasive part and I felt there was no reliable way to find recurrances in the future until they were advanced.  I had an Oncotype score of 24 so decided to get chemo (AC, 4 treatments).  My sentinal node was negative.  Did not need rads.  Did not get reconstruction.  The prostheses look completely normal.  Am on Arimidex with some side effects, but bearable.  I am very happy with my decision.  I felt I needed to be as aggressive as possible as I am a single mother of 2 boys and want to be around.  Recuperation from surgery was not a problem.  Chemo was not bad.  I did not miss a day of work during the chemo and only 2 weeks after each surgery. 

mdg

momacita55

Thank you for your reply and comments!  Thanks for suggesting to look at what Beesie had to say.  I did think she answered some of the questions I was concerned about. I had a lumpectomy on Jan 28, 2011. My sentinal node had no cancer and they got clear margins so additional surgery is not needed.  I seem to be healing well.  I won't know until my appointment on Feb 16th to find out the results of the ONCAtype DX tes, to determine which treatment I will need radiation or chemo. I appreciate everyones comments, but as of today...although it was a difficult decision, I think I made the right decision for me.

bdavis

Chrissy... I have the same feelings... I was just once again discussing this with my onc today... here are my reasons:

1. I don't want a future filled with MRI, biopsys etc

2 I have birad 3 stuff in my good breast and tons of weird things in my bad breast (hyperplasia, adenosis, papallomas)

3. I need to sleep at night

4. Once I have radiation, my skin would be compromised for future recon (which I would do), plus my cancer is left side, so my heart would get radiated... not in favor of that.

I had genetic testing today, so we'll see, but even if its negative I am 75% sure I will go for the PBMX.

momacita55

SassyKat suggested I read what you had shared and I like the details you shared with all of us.  This is truly a very difficult decision, I'm just thankful that I had a choice. I understand when you say that you don't hear much from the women who have a lumpectomey especially if they don't have to return for repeat surgeries or dealt with a future BC diagnosis. I will try o tfill the missing link as I now see how important it is to have another womans thoughts when dealing with the mixed opinions, histories, surgeries and the what if's of what could happen or not happen if you do this or that. It is a very personal decision and it is up to each of us make our decision! I had my lumpectomy on Jan 28, 2011. My sentinal node had no cancer and they got clear margins so additional surgery was not needed.  I seem to be healing well and BS Doc said if I felt like it I could be bowling my 3rd week after surgery, left side lumpectomy and right handed bowler.  The verdict is still out on my treatment. I won't know until my appointment on Feb 16th when I find out the results of the ONCAtype DX test, which determines how agressive my cancer was.  Till then I'll say my prayers that is was not aggressive and that my treatment will be only radiation and not chemo. I appreciate everyones comments, but as of today...although it was a very difficult decision, I think I made the right decision, a least for me.

1WonderWoman

Momacita: this is a difficult decision you are confronted with and all I can do is tell you my story and perhaps it will help you in some way.

The mammo showed 1cm and they gave me a Stage 1 prognosis.  As I am 40 years old, I did not want a future filled with mammos and investigations of every shadow so I decided, even though they said it was small, to go for a bmx.  Well, wasn't I surprised when after surgery I found out there was 2.5cms of ILC and 3.5cms of DCIS.  A lumpectomy would have been a disaster for me as they would have *never* found the DCIS and I would have undoubtedly had dirty margins because they would have been cutting 1cm, not 2.5cms.   I am very happy I went with a bmx.  Also, 18 nodes were removed and 2 were dirty so on to chemo I went.

The part I would encourage you to reconsider is immediate recon.  I did have immediate recon but if I knew there was even a chance I would have to go through chemo and then radiation, I would have never had immediate recon.  I would have done the bmx, waited to see if I needed chemo and /or radiation and then I would have gone for recon.   The reason I tell you this is all we can do is learn from other's mistakes and my decision to have immediate recon was a mistake, as follows.  I had to have 6 cycles of TAC and on cycles 1, 2 and 4 they kept me on Cipro because they said my body was fighting an infection.  On cycle 5 my left TE, or that in the bc infected breast, blew up and looked like a cranberry-colored eggplant coming out of my chest.  It was badly, badly infected. I wound up in the hospital for 8 days and had surgery on NYE to take the TE out because my body was not responding to the antibiotics and it became clear it had to come out.  Now I have a 2.5" open wound where my left breast use to be that leads to a roughly 12.5cm man-made orifice that I have to pack twice daily with gauze and it is still draining.  Because the infection is so bad, I should be getting radiation now but I am no longer a candidate for radiation because of how bad the infection is.  Fake boobs should NOT be coming before radiation but that is my lot and now I have to live with it.

In long, I am totally a proponent of bmx but definitely consider the additionally surgery and doing delayed recon if it seems, after discussing it with your docs, that delayed recon would make sense for you.

Best of luck and welcome to this dubious club of which none of us ever wanted to be members! 

ChrissyMH

Thanks Bdavis - I pulled your post to bring with me for support tomorrow to Dana-Farber.  Honestly, I still cannot fathom the ferocious reaction to mastectomy .. and from women: NP, surgeon, oncologist.  What's the threat?  I'm missing something be.  At this point, I will get what I want or die in the attempt.

bdavis

I am curious to see what they say... Everytime I discuss this with my onc, he is warming up to it... I think he can tell I am obcessing about it, and that isn't healthy either....

I explain to my husband who supports me but doesn't want me making a rash decision, that I am not getting rid of my breasts, just my breast tissue...

Valgirl

momocita55 - I opted for lumpectomy also.   Mine was Stage 1, grade 1, Oncotype 16 - so I only needed radiation and Arimidex as I am in my 50's.   This was the right choice for me.  I had no trouble with the rads ( a little tired near the end and breast got a little tan).  The tan is fading and I started Arimidex Jan. 1 and so far no side effects.      It's a personal decision and if given the option each has to make the decision that is best for them.   For me, I was not ready for a mastectomy and my BS said lumectomy was all I needed.  

nwest125

I started out with a lumpectomy and had to go back and get  clear margins and they found a second type of cancer so I ended up with a double mastectomy. The left breast was my decicision. I wish the first surgery had worked but it wasnt  meant to be but any way  just take one step at a time. The mastectomy was the last thing I would have chosen.

bdavis

Chrissy... have you seen your doctor?