LUMPECTOMY vs. MASTECTOMY.....HELP!

I was given the same options, but because of a rare bone disorder, the radiation oncologist decided that radiation was not going to be an option for me.  I had a simple mastectomy on right breast with no recon last September. 

I was not given the choice of a mastectomy.  So many things to think about when deciding between lumpectomy and mastectomy.  My lumpectomy scar is about 4 inches, but it is a curved incision around the aereola, so you can barely see it.  I too lost some volume initially, my BS said the amount they removed was about the size of a tangerine.  I had radiation, no chemo, and am now on tammi.  After radiation, I developed some fluid in my breast, so now my breast fills out my bra cup again.  My BS says that in time the fluid will go away, and that I will have a smaller firmer breast with a slight indent from where they removed tissue.

I'm not going to have reconstruction.  When my breast goes back to being smaller, I am just going to get one of those things you stuff in your bra cup to even me out.

Decisions, decisions...................I too had a lumpectomy......got home and THEN was told another necessary lumpectomy was needed because I did NOT have clear margins after the first surgery.....Trust me.....it was all so quick, a re excision was set up right then, over the phone ,no time to think.......I did get "clear" margins after the second surgery( both surgeries done within seven days!).....then on to six weeks of radiation and five boosts........

I too weighed lumpectomy and mastectomy.......If...and I say "IF" I had known I would have needed yet another re excision, I would have definetly opted for a mastectomy......I was still just recovering from the first surgery when the surgeon called with the path report instructing me another surgery was needed......I wasn't thinking straight.......

Now....I am always doubting my decision......always looking over your shoulder......a mastectomy is the way to go......peace of mind......

My six month check up is in three weeks......now I am anxious for the results....I wish I could have a mammogram "weekly!!".....

I am NOT neurotic.....pretty level headed......also, nursed for thirty years.....I have seen it all.....but, how different it is when its "your" body...your decision......Also.....I drove over hour everyday back and forth so for radiation, although we have a new facility five miles from where I live.....I wanted the best......and as a long time nurse,I knew exactly where my best care would be...............

Just thought this might help.

TJP--I had a lumpectomy for ADH which is a precurser to cancer 14 years ago.  The scar was around my nipple and I was dimpled for about a year and then it smoothed out. That breast was slightly larger than the other so it just evened things out.  Fast forward 14 years and it turned to cancer.  Had another lumpectomy and rads because my BS did not inform me that MX and no rads was an option (even knowing my history).  This was a different BS.  Anyway I defficantly had a symetry issue after rads and little by little my breast has gotten firmer and lifted so my nipples no longer match where they sit on my breast.  I cannot go braless it is very obvious.  Then one year after DX I get a lump in my so called go breast and have to have it removed.  It was B9 but it was on my chest wall and they had to remove alot of tissue so now I have very different boobs that do not match.  I am now going back and having a BMX because I cannot deal with the worry.  One scare after DX is enough for me.  I am scheduled for March and I hope I don't have any problems with my insurance as that could be the cause because I have already gone through treatment.  My PS is really good and I do believe that he can word everything so that I don't have a problem.  But there are no guarantees.  Also radiation is no walk in the park.  Whether you do lump and rads or MX and no rads is a very personal decision.  Do what feels right to you and that will be the right one.

Like you, I had a choice.   I had 2 kinds in the same breast - DCIS and IDC.  I originally had lumpectomy/radiation.  It looked great, but I had a small tumor, so not much was taken.  But it became difficult to monitor me due to my dense breasts, so more than a year later, I opted for a bilateral mastectomy w/expanders.

Sorry, no one can tell you what choice to make, but hopefully as we share our experiences, you can hear all sides and make your decision.

What are your recon options?  Can you do fat grafting after the rads to fill in the space?

In my family, my 3 elders all had lumpectomy + rads.  My grandmother is in her 70s and has no partner and she still complains about the divet where she had hers (which I honestly find hilarious, but I'm perhaps not the most sensitive).  My mom's was about your size, as far as the area removed, and she's a B cup, and it was upper chest.  She's pretty happy with it, has to be a little careful in swimsuit selection, but otherwise no one can tell except when undressed.  None of them wear special bras/prosthesis or anything, none of them had additional recon after the lumpectomy.

I had a NS BMX with recon because I had to have an MX on the cancer side, and my risk for cancer on the non-cancer side is sky high due to genetics.  So I guess I was "lucky" b/c my choices were limited : )  My BS and PS said symmetry concerns with unilateral MX shouldn't be an issue, but if you read the forums, obviously it is a concern for a lot of women.  MX is a pretty intense surgery, I wouldn't want to do it again, esp BMX.  Good thing you can't do BMX twice.  Lumpectomy, by comparison, has a shorter recovery and you look and feel much more yourself more quickly.  You keep sensation in your breasts!  That would have been great!

 I would meet with a few plastic surgeons before making a decision and see what they say.  I would also hunt for a BS who performs nipple sparing surgery if you are leaning toward MX.  I don't see any reason to not at least explore that option.

 Standard of care is breast conserving treatment b/c the recurrence risk is the SAME as with MX** edit, as pointed out below, it's survival, but recurrence risk data is based on older radiation tmt options (women treated 1995 and prior), current data is better**, for women who are given the choice -that's why it's a personal choice.  There are a lot of physicians who feel that mastectomy is over-performed, particularly in women over 40.  Your insurance will have to pay for reconstruction, no matter what surgery you choose -including changing the non-cancer side to "match" the cancer side, and will continue to pay, if you are dissatisfied with the results.  There are a lot of recon options to address dissatisfaction other than a mastectomy post-lumpectomy, and that would be on the bottom of the list for a lot of surgeons.  They have a huge bag of tricks that didn't exist 10 years ago.  Radiation makes it harder, but there is still a lot that can be done.   The PS will be able to give more specific advice based on the location, your cup size, your body, etc. 

Amastectomy is sooo much bigger than a lumpectomy. I did not have a choice and had to do a mastectomy. Would have preferred lumpectomy. Not as traumatizing..I don't know...just a thought.

TJP,

I think the ladies who have posted have given great wisdom from their combined experiences.  I had specs (calcification spots) in a 1 cm. area identified by a mammogram, needle biopsy confirmed DCIS in left breast, the PEM Scan identified a 1.7 cm area of possible problem area, with the lumpectomy (which was an easy choice for me - I like my breasts and wanted to keep them) the BS removed 4.5 cm without clear margins.  So imagine a very, very large chicken egg taken out of an A/B cup breast, the volume was reduced appearance-wise maybe by 1/5, not noticible at a glance, but easily seen if you are looking.  (Side note: Due to swelling after the lumpectomy I was able to tell no difference btwn the two breasts, but 1 wk and 2 days later I could tell the difference; and I understand after radiation that can become even more apparent)  But if I had clear margins, I would have been delighted with that.  However, I did not have clear margins and had to decide the next step.  I elected a NS BMX with tissue reconstruction, b/c I did not want to go back in and replace implants potentially every 10-15 years.  I think between your MRI, the above ladies wisdom, what your drs. say, the research stats, and your gut, you will arrive at the best decision for you.

Here's one of the best websites with information about reconstruction:

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/breast-reconstruction/index.html  Use the index on the right hand side to learn about the different types of reconstruction. 

You also might want to read the reconstruction forum on this board so that you have a realistic idea of what to expect.

And here's a copy of Beesie's post (see below) when I was asking some of the same questions;  very good questions to consider as you move forward.  Wishing you all the best and do let us know about your MRI results: 

• Do you want to avoid radiation? If your DCIS isn't near the chest wall, 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 DCIS is found near the chest wall. Radiation might also be recommended if it turns out that you have a large area of invasive cancer in addition to the DCIS and/or if it turns out that you are node positive (which is only possible if you have invasive cancer).

• Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the first risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast. However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So if you have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether you have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.

• 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 do you feel about going through a longer surgery and a longer, more restricted recovery period?

• Do you plan to have reconstruction? 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. Are you prepared for this?

• 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 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? 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 mastectomy, 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 DCIS can't be right up near the nipple).

• How do you feel about losing the natural feeling in your breast and your nipple? Are your nipples important to you sexually? A mastectomy 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.

• 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. Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they feared. For women who are affected by the loss, the real impact usually doesn't hit until many months or even years later. That's why trying to think ahead to a time when this diagnosis is long behind you is important.

• 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 satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 mth or annual screenings? If you will always worry, then having a mastectomy might be a better option for you; many women get peace of mind by having a mastectomy. You just need to know yourself. If you are "the worrying type", think about whether you may worry regardless of the type of surgery you have. Some of the biggest worriers here are women who've had BMX. After a breast cancer diagnosis there is always something to worry about so those who are prone to worry certainly can find something to worry about. Be aware too that while a mastectomy will likely significantly reduce your local (in the breast area) recurrence risk, a recurrence or the development of a new BC is still possible after a mastectomy. Lots to consider.

• 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 DCIS cannot recur 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 and this may be compounded if you have other risk factors. Do yourself a favor and 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 single mastectomy 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?

 

Dear TJP,

The waiting is the hardest part, isn't it?

I had ADH removal in 2008 and 2009.  With my strong family history of breast cancer (mother and sister before 45) I had MRIs, too.  In 2011 my mammo came out clear and my MRI showed a possibility of DCIS and it was - it was 6 cm long, like a string of pearls in my breast duct. Even though the DCIS was going to eventually happen, the oncologist I met said there was a chance that my previous biopsies and surgeries spurred the DCIS at a sooner date.

  

Because of this info, and my family history, I had a BMX with immediate reconstruction with tissue expanders.  I hit a bump in the road with one tissue expander -- had an infection, had it removed, and now it's back in again.   

I did shy away from the tamoxifen, lumpectomy and radiation route, because my sister had some serious side effects with tamoxifen.  She needed an emergency hysterectomy within a year due to excessive, nonstop bleeding and she also developed cataracts in both eyes. Remember, these side effects don't happen to everyone -- because my sister had them I wasn't thrilled for me to be on tamoxifen.  

Although reconstruction is tough at times, I am happy with my decision.  And that's just it, you have to find the decision which fits you best.

Hugs,

T  

Any thoughts to have an oncotype done? 

I could be dbdaze's twin in diagnosis, preferences, and treatment, except my DCIS was larger possibly because it was 6 months from diagnosis to lumpectomy. They told me absolutely no rush, probably nothing will ever happen with it. I wanted a mx off the bat because I did not want to have to monitor, but they were insistent that it would be overreacting. When the margins were poor, I said "now will you listen to me and remove the damned thing?" I had the prosthesis for a year while waiting for the DIEP and remaining mx because I needed to find my way into the care of a super experienced flap surgeon and work my way up the waiting list. Happy at 5 weeks post op. I like the look in clothes more than I liked the original equipment and much more than I liked the prosthesis which was not well fitted. I also quite like the tummy, although I'm not fully recovered there yet. The oncologist will see me periodically for a few years but no more mammograms, no radiation, no chemo, no tamoxifen. She says I am basically out of the BC business now. That's what I wanted. There are medical pros and cons to everything and there are probably several combinations of approaches that all come out a wash in terms of recurrence and survival, especially with stage 0 DCIS, but they can be very different in terms of lifestyle impact, and that gets down to your personal values and temperament.

Back in August 2010 I had needle biopsies in right breast, then a surgical biopsy which showed the DCIS.  Then I had a lumpectomy after that without getting clear margins. Because I had previous surgical biopsies a few years back, all in the right breast, I went for a mastectomy with DIEP in December 2010.  My initial BS said she would recommend I do that because the look of the breast would be compromised.  The DIEP was difficult but worth it for me, being single and hoping to meet someone. It turned out I did meet a man this past September 2010 and have been having a lot of fun with him. He's not hung up on the fact that one breast is reconstructed. I'm grateful I had a great surgeon who matched it up really closely with my left breast. It's a hard decision to make, but you will know what you want when you weigh all the pros and cons. Personally, I would have had a hard time adjusting if the reconstruction had not gone so well. Maybe it is vanity, but I am glad I took that into consideration when making the final decision.