lumpectomy or mastectomy

Blondie17

Hi,

I was diagnosed with IDC on Dec. 10th.   The reality is setting in and my emotions are in high gear.  I have met with a surgeon, an oncologist and my next step is a Plastic Surgeon.  I am trying to decide whether to have just a lumpectomy with radiation or step up for mastectomy with reconstruction.   MRI show no sign of cancer in my lymph nodes but I am 1. Worried about getting it in my left breast as well as how disfigured My right will look after the lumpectomy.    Would like to know how others have made their choices.

I am scared, anxious and hormonal......

Golden01

I think the surgery choices were the hardest ones I had to make when I was diagnosed with BC more than two years ago. Know that as hard as it is, you'll make the right decision for you and your situation.My decision was to have a lumpectomy and planned to have radiation to follow. Plans changed for me and I had to learn to be more flexible in looking ahead towards treatments. 

I had a lumpectomy and then had to proceed to MX due to bad margins. My BS was clear that there was no medical indication for me to have a BMX but it needed to be a personal decision. I had a BMX on 9/8/11. The decisions about surgery were very-very hard for me to make.

What helped me the most on the decision to have a BMX was a fact sheet from the National Cancer Institute (NCI). Here's the link:www.cancer.gov/cancertopics/fa.... The info has been updated since I had to make my decision and may be helpful to you.

We also saw an ACS Cancer Navigator that helped us talk through the options and helped us know we had left no stone unturned in making our decision.

Turns out, they found "flat atypia" in my other breast and both the PS and MO have indicated they felt that I would have been back for treatment for cancer in that breast at some point. Even if they had not found anything, I know I made the right decision for me.

Good wishes to you as you work through these difficult decisions.

Kathie100

First of all really sorry your going through this. I know the decisions you have to make at this time are so hard and so stressful. I can say there are many things to consider when making them. I did a lumpectomy because my cancer was only 1cm, I also don't work so going through 35 radiation treatments wouldn't be a problem. Would I have done things different today I have to say I would. I ended up having to do Chemotherapy which wore me out so by the time radiation came along I really didn't want to do. With a lumpectomy they say you have to have radiation. My oncotype score was 19 so my Onc Dr suggested chemotherapy. The problem was I didn't have my oncotype score until after the lumpectomy.   Everyone tries to make the best decisions possible based on their individual results. I learned so much from the ladies here so read as much as you can from the discussion boards and ask questions. I don't normally respond to anyone on here because I'm a Newby also but reading your post brought back the memories of when I also had to make decisions based on something I knew nothing about. Also many facilities  have a navigator that can help you make the best decisions. Stay strong and positive, keep your faith and family close. Hugs to you 

dense

Hi there,

I went through this two years ago, and decided to have a bilateral mastectomy.  I found the lump myself, and even though it was palpable, it could not be seen on a mammogram.  The radiologist suggested that I should consider a bilateral mastectomy, given how difficult it was for her to read both the mammogram and the MRI.  She said that I was lucky that the lump was in a thin part of the breast where I could feel it, if it were in a different part I might have not felt it until it was much larger.  After the mastectomy they found there were atypical cells in both breasts, but not additional cancer.

I agree with the other ladies, that it is a tough decision.  And even now I wonder if I made the right decision.  Maybe I could have deferred the BMX decision: did the lumpectomy and the sentinel node dissection, got my Oncotype DX score, took tamoxifen for a while -- and then observed whether tamoxifen decreased my breast density and made the mammograms easier to read.

Best wishes to you.

Beesie

Blondie, I'm sorry that you've been diagnosed.  The lumpectomy vs. mastectomy decision is one of the toughest decisions that many of us face through this process.

Some time ago I put together a list of considerations for
someone who was making the surgical choice between a lumpectomy,
mastectomy and bilateral mastectomy. I've posted this many times now
and have continued to refine it and add to it, thanks to great input
from many others. Some women have gone through the list and decided to
have a lumpectomy, others have chosen a single mastectomy and others
have opted for a bilateral mastectomy. So the purpose is simply to help
women figure out what's right for them - both in the short term but more
importantly, over the long term.

Before getting to that list, here is some research that
compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach.  If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research
has consistently shown is that long-term survival is the same regardless
of the type of surgery one has. This is largely because it's not the
breast cancer in the breast that affects survival, but it's the breast
cancer that's left the breast that is the concern. The risk is that some
BC might have moved beyond the breast prior to surgery. So the type of
surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't
affect survival rates. Here are a few studies that compare the
different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year
Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy,
and Lumpectomy plus Irradiation for the Treatment of Invasive Breast
Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your
  cancer isn't near the chest wall and if your nodes are clear, then it
  may be possible to avoid radiation if you have a mastectomy. This is a
  big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy,
  if some cancer cells are found near the chest wall, or if the area of
  invasive cancer is very large and/or if it turns out that you are node
  positive (particularly several nodes).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It
  is very important to understand that if it's believed necessary or
  beneficial for you to have chemo or take hormone therapy, it won't make
  any difference if you have a lumpectomy or a mastectomy or a bilateral
  mastectomy. (Note that the exception is women with DCIS or
  possibly very early Stage I invasive cancer, who may be able to avoid
  Tamoxifen by having a mastectomy or a BMX.)
• Does the length of the surgery and the length of the recovery period matter to you? For
  most women, a lumpectomy is a relatively easy surgery and recovery.
  After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy
  is a longer, more complex surgery and the recovery period is longer.
• How will you deal with the side effects from Rads?
  For most patients the side effects of rads are not as difficult as they
  expected, but most women do experience some side effects. You should be
  prepared for some temporary discomfort, fatigue and skin irritation,
  particularly towards the end of your rads cycle. Most side effects go
  away a few weeks after treatment ends but if you have other health
  problems, particularly heart or lung problems, you may be at risk for
  more serious side effects. This can be an important consideration and
  should be discussed with your doctor.
• Do you plan to have reconstruction if you have a MX or BMX? If
  so, be aware that reconstruction, even "immediate" reconstruction, is
  usually a long process - many months - and most often requires more than
  one surgery. Some women have little discomfort during the
  reconstruction process but other women find the process to be very
  difficult - there is no way to know until you are going through it.
• If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some
  lucky women breeze through reconstruction but unfortunately, many have
  complications. These may be short-term and/or fixable or they may be
  long-term and difficult to fix. Common problems include ripples and
  indentations and unevenness. You may have lingering side effects (muscle
  pain, spasms, itching, etc.) on one side or both (if you have a BMX).
  If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with
  reconstruction done on both sides at the same time), will you regret
  the decision to remove your breasts or your healthy breast? Are you
  prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy or BMX? A
  reconstructed breast is not the same as a real breast. Some women love
  their reconstructed breasts while some women hate them. Most probably
  fall in-between. Reconstructed breasts usually looks fine in clothing
  but may not appear natural when naked. They may not feel natural or move
  naturally, particularly if you have implant reconstruction. If you do
  choose to have a MX or BMX, one option that will help you get a more
  natural appearance is a nipple sparing mastectomy (NSM). Not all breast
  surgeons are trained to do NSMs so your surgeon might not present this
  option to you. Ask your surgeon about it if you are interested and if
  he/she doesn't do nipple sparing mastectomies, it may be worth the
  effort to find a surgeon who does do NSMs in order to see if this option
  is available for you (your area of cancer can't be right up near the
  nipple).
• If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are
  your nipples important to you sexually? A MX or BMX will change your
  body for the rest of your life and you have to be prepared for that.
  Keep in mind as well that even if you have a nipple sparing mastectomy,
  except in rare cases (and except with a new untested reconstruction
  procedure) the most feeling that can be retained in your nipples is
  about 20% - the nerves that affect 80% of nipple sensation are by
  necessity cut during the surgery and cannot be reconnected. Any
  breast/nipple feeling you regain will be surface feeling only (or
  phantom sensations, which are actually quite common and feel very real);
  there will be no feeling inside your breast, instead your breast will
  feel numb. For some, loss of breast/nipple sensation is a small price to
  pay; for others, it has a huge impact on their lives.
• If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some
  women are glad that their breast(s) is gone because it was the source
  of the cancer, but others become angry that cancer forced them to lose
  their breast(s). How do you think you will feel? Don't just consider how
  you feel now, as you are facing the breast cancer diagnosis, but try to
  think about how you will feel in a year and in a few years, once this
  diagnosis, and the fear, is well behind you.
• If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For
  the first year or two after diagnosis, most women get very stressed
  when they have to go for their screenings. The good news is that usually
  this fear fades over time. However some women choose to have a BMX in
  order to avoid the anxiety of these checks.
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will
  you feel that the cancer is gone because your breast(s) is gone? Or
  will the loss of your breast(s) be a constant reminder that you had
  breast cancer?
• Appearance issues aside, before making this decision you
  should find out what your doctors estimate your recurrence risk will be
  if you have a lumpectomy and radiation. Is this risk
  level one that you can live with or one that scares you? Will you live
  in constant fear or will you be comfortable that you've reduced your
  risk sufficiently and not worry except when you have your 6 month or
  annual screenings? If you'll always worry, then having a mastectomy
  might be a better option; many women get peace of mind by having a
  mastectomy. But keep in mind that over time the fear will fade, and
  that a MX or BMX does not mean that you no longer need checks - although
  the risk is low, you can still be diagnosed with BC or a recurrence
  even after a MX or BMX. Be aware too that while a mastectomy may
  significantly reduce your local (in the breast area) recurrence risk, it
  has no impact whatsoever on your risk of distant recurrence (i.e.
  mets).
• Do you know your risk to get BC in your other (the non-cancer) breast? Is
  this a risk level that scares you? Or is this a risk level that you can
  live with? Keep in mind that breast cancer very rarely recurs in the
  contralateral breast so your current diagnosis doesn't impact your other
  breast. However, anyone who's been diagnosed with BC one time is at
  higher risk to be diagnosed again with a new primary breast cancer
  (i.e. a cancer unrelated to the original diagnosis) and this may be
  compounded if you have other risk factors. Find out your risk level
  from your oncologist. When you talk to your oncologist, determine if
  BRCA genetic testing might be appropriate for you based on your family
  history of cancer and/or your age and/or your ethnicity (those of
  Ashkenazi Jewish descent are at higher risk). Those who are BRCA
  positive are very high risk to get BC and for many women, a positive
  BRCA test result is a compelling reason to have a bilateral mastectomy.
  On the other hand, for many women a negative BRCA test result helps with
  the decision to have a lumpectomy or single mastectomy rather than a
  bilateral. Talk to your oncologist. Don't assume that you know what your
  risk is; you may be surprised to find that it's much higher than you
  think, or much lower than you think (my risk was much less than I would
  ever have thought).
• How will you feel if you have a lumpectomy or UMX and at
  some point in the future (maybe in 2 years or maybe in 30 years) you
  get BC again, either a recurrence in the same breast or a new BC in
  either breast? Will you regret your decision and wish that
  you'd had a bilateral mastectomy? Or will you be grateful for the extra
  time that you had with your breasts, knowing that you made the best
  decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will
  you question (either immediately or years in the future) why you made
  the decision to have the bilateral? Or will you be satisfied that you
  made the best decision with the information you had?

.

I hope that this helps. And remember.... this is your decision. How
someone else feels about it and the experience that someone else had
might be very different than how you will feel about it and the
experience that you will have. So try to figure out what's best for
you, or at least, the option that you think you can live with most
easily, given all the risks associated with all of the options. Good
luck with your decision!

marty8859

Blondie17,

I myself chose lumpectomy. I am only 50 and thou the choice is a personal one  having had no family history of bc and only being stage 1A I felt lumpectomy was the better choice for myself also in the fact that both lumpectomy and mastectomy rates were the same. Yes your breast with a lumpectomy will be slightly higher but when wearing a bra no one will notice the difference. As for having breast cancer return in other breast my oncologist said the chance was slim to none. Keep in mind the choice is yours to make and there is no wrong choice. I wish you much blessings.

peacestrength

This is a very personal decision.  I opted for a bilateral mx due to my breast density - I am only 43.  Mammograms missed my bc due to density and I did not want to deal with density ever again.  

You will make the correct decision for you.  

Moderators

Blondie, as well as the great insights and experiences you've had from other members, the main Breastcancer.org site has a section called Mastectomy vs. Lumpectomy that goes through the deciding factors and advantages/disadvantages of each choice. Best wishes, whatever you decide.

• The Mods

Warrior_Woman

hi Blondie - I can only offer my decision.  I was planning for a lumpectomy when I learned I also have LCIS.  I am the type of person who worries a lot.  LCIS isn't cancer but it places me at higher risk for a local recurrence.  Within 2 days I went from lumpectomy to mastectomy.  My oncologist helped when he asked how I expected I would feel after each.  I expected to be sad for the loss of my breast but several weeks out I am surprisingly relieved.  I have expanders and can hope for decent reconstruction.  I am less anxious with this decision.  I believe this was a better decision for my circumstances and I am also glad to avoid the side effects of radiation.  This is my story.  I wish for you to write your own with the outcome that is best for you.

foreverchanged

Lumpectomy was my first choice but had cancer in 2 areas of the left breast that would leave me too disfigured for that option.  I decided on bilateral because I had a lot of abnormalities in the right breast that was told had high likelihood of being cancerous within 5 years.  Also as a large breasted woman I was told if I went with a single I would require a breast reduction on right side anyway because the 800ml max size of silicon implants was going to be much smaller than my original size.  As has been said it is a very personal decision to make based on your condition and preferences, but take the time to explore all your options.  Good luck!

CaliKiwi

I'm so glad you posted this. I'm struggling with the very same decision you are, while I have read some of the other threads and information the more thoughts I can get the better. Good luck making your decision. I think we each have to go with what is best for us.

mareluna

Hi,

    I am sorry you are going through this. I had a lumpectomy first. I had 16 rounds of chemo. I was not going to have a BMX but after genetic testing I was found to have BRCA 1 mutation. I also am triple negative. So after all my chemos I had a BMX with direct to implant using alloderm. Doing that I did not have to have radiation. I also had my ovaries and tubes removed. It was hard to decide what to do but I decided to do the BMX. With the BRCA 1 mutation I was high risk to have more breast cancer and or ovarian cancer.

 Best wishes to you. I am sorry you have to go through this.

edwards750

Blondie - I went with a lumpectomy mainly on the advice of my BS. He is all about saving the breast and since the survival odds were the same and since I would not be having reconstruction a lumpectomy was the right choice for me. Also, Kathie I didn't have my Oncotype score until after my lumpectomy either. The thing is you wouldn't be getting an Oncotype test before the surgery anyway. You have to wait on the Path report following the surgery to wit my Path report revealed a micromet in the SN; something my BS was surprised by and I was stunned to hear. It was at that time that my ONC ordered the Oncotype test. She was ambivalent about my treatment plan. She admitted Oncologists had been overtreating women for years and this test afforded them additional information about your particular tumor. Once my score came back@11 and my tumor was determined to be non-aggressive my ONC decided I would have radiation. I had 33 RADS treatments. No big deal and I was able to dodge chemo. So just saying you couldn't/wouldn't have known before the surgery. We all have to make choices based on what we know; it is our life after all. One thing I will say Blondie is no matter what you decide make sure you don't second guess yourself or look back. It is your decision - no right or wrong answers...good luck. Diane

checkers

Blondie,

I'm sorry you have to go through this. I know it was the most agonizing decision I had ever had to make. I  I went with a lumpectomy based on three factors, I was BRCA negative (even though 3 of my dad's sisters had BC) the tumor was small (1.4cm and HER neg) and having sensation in my breasts is part of my sexuality (very personal choice).  The lumpectomy went well with clear margins and no lymph node involvement but when they did the OncotypeDX (recurrence rate) it came back high. So I had to have chemo, radiation and now I start hormone therapy in a couple of weeks. Who knows, had I known my OncoptypeDX score before the lumpectomy and even though I was afraid of losing my breasts, I may have gone bilateral mastectomy.  Do I regret my decision? ABSOLUTELY NOT! Once I made the decision for lumpectomy I felt relaxed. I knew it was the right choice for me.  I also know that once you make your decision, it will be the right one for you.  Best of luck, hope all goes well.

missingmercury

I have two masses and some bad cells in other ducts between. I did not even hesitate to choose mastectomy.  I feel like there is an open invitation to cancer on my breasts now and I want it revoked.  Also, I am not small cupped.  They would have to do a reduction or something to the non cancer side anyway, so might as well start with a level field with as little breast tissue as possible.  I have had benign lumpectomies in both breasts in the past.  My sister in law died of breast cancer and my friend had a mastectomy on one side and already has had two biopsies on the other side.   I am triple positive.  I have to do IV chemo and Herceptin after. If it is in my lymph nodes, add RAD.

ruthbru

If you find that you really are not sure, then I'd suggest you go with the lumpectomy. With that you can change your mind later; but once your breasts are gone...they are gone forever. I chose a lumpectomy because it is a much less invasive surgery, has a much quicker recovery etc. Also, I like having breasts but knew, after talking to people who had done reconstruction and also by reading some of the reconstruction threads here, that I would most likely not be willing to go through all the time/expense/pain/hassle/uncertain results etc. of reconstruction....so I'm glad having a lumpectomy was an option for me.

mareluna

I had lumpectomy first. Then it was found that I had BRCA1 mutation so I ended up doing a BMX with direct to implant after I finished my chemo. It took me forever to make up my mind to do BMX. I really did not want to do it.

Kalonis52

Hi honey, Sorry for your diagnosis. You can always opt for a Lumpectomy since it is small yet. Then you can decide after to have a Mastectomy of the Right Breast. I had a 2 cm lump in my left breast, and, I first had it removed by Lumpectomy. Then I made a decision afterward to go on for a left breast mastectomy. And, then construction. However, with making that choice, my Surgeon did a right breast lift to match my new left breast. Technology is so good now. I do hope you make a good decision. Everything will work out. Just keep the Faith.

Kaloni 

Barncat

I chose a DMX .  I've known for a long time now that I'm BRCA2 positive.  My oncologist said a lumpectomy wasn't and option for me as the cancer would just come back......just like my Mother's did.  ...and a single MX wasn't an option as the cancer would come back  on the other side.....just like my Mother's did.  So, I had made my peace with a DMX, went direct to implant with 330cc gummy bear implants.  I did have some complications with my right side, but I would still make the same choice all over again.  I love my new boobs!!  Now that they're healing, I think they're beautiful.  Now I'm deciding whether to let my PS create nipples, or go for the 3D tattoos. 

I hope you make the decision that is right for you......

mareluna

I love my 3D tattoos. Made a world of difference. My PS told me that created nipples were a possibility but they don't react like real ones after a year or so anyway. I was tired of surgeries.

Lina999

Hello all, I wanted to say thank you for posting all of your experiences and thoughts.  I am going through the same decision process having just been diagnosed and this is so helpful.  I wish you all the best.  Blondie, thanks for asking the question.  I hope this has helped you make your decision as well.  

elimar86861

I just wanted to add this:  Although the removal of at least a few lymph nodes occurs with either surgery and both surgeries face the risk of lymphedama, the more extensive Mx surgery severs and disrupts more of the lymph channels for drainage.  I don't know actual numbers, but rarely do I read about a woman with "truncal LE" that has had lumpectomy. 

(Node removal and radiation to nodes make LE in an arm a potential risk for both options, so my comment is more about the build up of fluid in the back and chest area of the torso.)

Another thing more featured in Mx is the use of drains (to drain off post surgical edema) so there is some associated risk of infection at these sites.

muska

Lumpectomy or mastectomy, one breast or both are tough decisions to make. They are especially hard because one usually has to make them soon after initial diagnosis when we know little about the disease and what follows. Also, these decisions are often made before the extent of BC is known - they can't tell for sure whether your lymph nodes are involved or not until they look at them during surgery. 

My BS told me at the very first consult that she would not do lumpectomy because my two tiny tumors were in two diff quadrants and she would not be able to guarantee clean margins, plus the breast would be very disfigured anyway. So she made my decision easier. I did struggle with deciding what to do about the other breast that showed no cancer, radiologists said they could monitor it and I did not have to do double mastectomy. Had an MRI that showed nothing new and clean lymph nodes on both sides. No history of breast cancer in the family, Brca negative. But had calcifications in both breasts for years, so I thought if it progressed to cancer in one breast why wouldn't it do the same on the other side? After all it's the same body. So I decided to have double mastectomy. Surgical pathology revealed: IDC (9mm), DCIS (3mm) and LCIS in one breast and very extensive LCIS in the other. Am I glad I had BMX? Of course I am. 

Also, I think age and cosmetic results are two factors that play into the decision making process. If one wants to have reconstruction better cosmetic results are achieved when both breasts are reconstructed at the same time.

Beesie

There are good reasons to have a BMX but personally I would never suggest that anyone have one for cosmetic reasons.  Having both breasts removed at the same time does not mean that the reconstruction will be easier or any more likely to be symmetrical.  Our breasts are not connected so even if done at the same time, each breast is reconstructed individually. There is a 30%+ risk of complications or problems, and if you are reconstructing both breasts, then you face that 30%+ risk for EACH breast.  Our bodies are not naturally symmetrical so bilateral reconstruction often results in uneven breasts, and therefore, the need for revision surgeries.

Reconstructed breasts also lose all natural feeling and sensations.  Personally I would not give up the natural sensation of my healthy breast for the sake of the cosmetic appearance (even if it were true that a BMX ensured better cosmetic results) which only I, my husband and my doctor will ever see. 

The advice that I've given for 8 years on this board is that if your plastic surgeon tells you that you should have a BMX because it will make his or her reconstruction job easier (in terms of achieving symmetry), then find a different plastic surgeon.  The plastic surgeon's job is to get you the best possible symmetry whether you choose to have a UMX or a BMX.

elimar, very interesting point about the higher risk of truncal lymphedema after a MX. 

Rosiesride

I just made my decision...after much research, input from many doctors...2nd and third opinions...tumor board...gut feelings too...I will keep my lumpectomy...I know what is in store for me for screenings... I was given the lumpectomy first...with sentinel node biopsy axilla dissection....what was thought to be a stage 1 , going in thinking lumpectomy radiation..turned out to be high stage 2...3/11 positive nodes.   At follow up visit, surgeon got clear margins and since I wasn't sure what I wanted to do as far as bmx or keeping lumpectomy, she said do chemo first and have time to do my homework...then decide before radiation starts...so these past few weeks were spent trying to decide and , for me and where I am in life, all my "homework" and gut feeling led me to my decision.  I am confident it is a good one for me and I also went with my gut feeling...such a hard time so I wish you luck!! Rosie

ruthbru

I do think you will be happy about your decision, Rosie, and more so as time goes on, because once you are done with rads...then you are DONE. Not having to worry about all the hassles, time, pain, possible problems etc. of reconstruction, or the issues that may go along with being flat. Screenings eventually go back to a yearly mammogram & poke around by the oncologist, so it gets to the point where screenings aren't so bad either.