LUMPECTOMY VS. MASTECTOMY HELP!!!!

This is MY story.....I am 41. Found out Dec 23rd of 2011 my mammo didn't look good. Had a stereotactic biopsy done. Waited for the results. They told me I had 2 lesions of DCIS to be removed. After my Lumptectomy I received my pathology report. It said now I have a 6mm tumor and it's invasive breast cancer. Me......my "personal" choice. I'm having a double mastectomy done. I only have it in my right breast. I have a few friends that have BC and went with just having a lumptectomy, radiation, tamoxifan, chemo......and they told me how "they" fear the cancer will come back. Another thing that helped me. I met a girl (i have a few friends that work at a hospital that know so many people that are doctors/surgeons and etc) she is 37. She tested positive for the BRAC test for having the ovarian and breast cancer gene. She chose to have her ovaries, uterous, and breast removed. She was kind enough to meet with my husband and I to show me her outcome of how her breast looked today after the reconstruction. She let me feel her breast too. Yes, she had scars across that were not pleasant looking but she's having tattooed raised nipples put on very soon cuz she's at the end of her healing process. She was so full of life. So gratelful she did it, and was very inspiring for ME!!! For a complete stranger to do this for me and let my husband look at her was just amazing. It made me feel a little better that I would not look like a freak. Me, my situation, I can't do the nipple sparring surgery cuz of my DCIS is invasive now and I would run a huge risk transmitting my breast cancer in my thigh......(long story) but I'm not going to go through that. Me, I don't want to go through this emotional rollercoaster......waiting, wondering everytime I need a mammogram. I don't want to do radiation, or chemo or take that pill for 5 years. Yes, I have a chance that I might have to do that.....we won't know till I have my double mastectomy next Friday when they take out one of my lymph nodes and test it! Cross your fingers they will be clear. I just want this over with!!! I "personally" want out of this nightmare that I've been on this past month. Not sure if I helped you, but this is my personal choice of what is (I feel) is best for me. Good luck with your decision!!! ((((((hugs))))))

p.s.

If I can reccomend something to both of you.

go with an "apple core" surgery for a skin sparing, mtmy.  They do not leave any scars on the breast at all, only a thin white line around the nipple, whether you keep it, in which case, it's just the thin white line that completely fades, or whether you get some new ones, in which case, they tatoo color over it.

Good luck to both of you!!!!

sjensen - I am much older than you but have had a skin sparing/nipple sparing BMX with incisions in the IMF (under the breast) so I wanted to point out a couple of things.  Your tumor is very tiny, unlikely to have gone to the nodes.  You will have to wait for that info - but I would be surprised if you have a local spread.  I did have 2 positive nodes but both my breast surgeon and oncologist felt that my best option was to have the first level of nodes removed (subsequent surgery) and not have any radiation.  If you have to do this the skill of your surgeon is really important.  I had been closely followed for at least 20 years for dense and fibrocystic breasts so although I was a lumpectomy candidate, I chose the BMX because I didn't want the stress of having lumpy breasts that were difficult to image.  If you have a lumpectomy you will be required to have radiation.  If you have another diagnosis in the future, and/or elect MX in the future, you will likely have skin issues that will complicate reconstruction.  Most plastic surgeons will want you to do a flap surgery on previously radiated skin, a much more complicated surgery.  Previously irradiated skin is very problematic, doesn't stretch well, or heal very well.  It is also important to know that there are sometimes symmetry issues with a uni but do take a look at the threads by ladies who have taken that option.

francksgirl - taking Tamoxifen is not dependent on whether or not your nodes are positive, it is dependent on whether or not your invasive component is ER+.  At your age I would be concerned with not taking it if you are ER+.  If your nodes are positive then you would most likely be looking at chemo, the hormonal meds would come after that if they are applicable.

sjensen29 I'm so sorry that you are facing this decision at 26. I can share what I decided if it's helpful at all. I was diagnosed at 41 with Triple positive BC and told it was very aggressive due to the Her2+ component. I had no lymph node involvement.

My decision-making went something like this:

1. I had the BRCA test and if it was positive I was prepared for a BMX. It was negative so I still had the option of lumpectomy vs. BMX

2. I asked a lot of questions about what difference it made in my prognosis both ways and I was told a BMX only gave me a 1% reduction in recurrence.

3. I think it's important to consider how you will feel afterwards regarding followup. Will you be able to handle the anxiety of mammograms every 6 months? Will you worry more about recurrence if you don't have a BMX? Will you have regrets if you choose lumpectomy, have a recurrence and need more surgery? I ultimately decided to have a lumptectomy because I didn't want the additional complications of a much bigger surgery and it was a personal decision to keep my breast for now even though I know a recurrence could mean losing it later. I decided to take the chance because maybe the statistics will be in my favor and I'll never get BC again. I'm realistic, however, and I'll have no regrets about my decision if I do. Perhaps I'll have a lot more years with my natural breast and I'll deal with more surgery when the day comes.

Regarding the anxiety of followup mammograms with lumpectomy: It's huge! I had my first mammogram  this week after spending the past year in chemo, rads and herceptin. It was a nightmare. I was called back into the room 3 times for additional films with a heart-stopping wait in between. Then the tech pulled me aside and asked me to stay for an ultrasound that went on endlessly. Then more waiting and me thinking the worst. I was finally told I could leave and that my BS would receive the report. I admit I'm spooked by it but I can handle it. Not everyone can. A dear friend of mine chose to have a BMX on Tuesday rather than a lumpectomy for this very reason. She said she would never be able to deal with the anxiety of 6 month mammos and just needed to be done with it once and for all. There is no wrong answer and the decision is so complicated. I wish you the best as you go forward. You will find so much support here no matter what you decide. HUGS!!!

sjensen29 - I'm so sorry that you're joining the BC club…you're so young, it just doesn't seem right. I have a 21 yr old daughter, and although I didn't test positive for BCRA, the genetic counsellor said that due to my cancer and family history, she has a greater than 25% chance of getting BC. If she were diagnosed at your age, regardless of the size of the lesion(s), I would advocate for a mastectomy because that would give her the best chance for no recurrence, and if nodes were clean, likely wouldn't require chemo or radiation. I had a mastectomy (lumpectomy wasn't an option) when I was diagnosed at age 43 and 1 year later chose to have a prophy on the other side and get tissue expanders and eventual implants. Knowing that my odds of recurrence are lower than the general population and that I'll never have to go for another mammo is comforting.

That being said, I know others who've had a lumpectomy with radiation and/or chemo and they're doing fine years later. I think your situation is rather unique because of your age and your understandable concern about long term effects from treatment, however as Anniealso said "First, it is small.  Second, it is Grade 2, more than grade 1, but still good.  Third, it is ER+, which is a good thing, as they can treat those more successfully.  Fourth, it is HER2-, hallelieujah.  Good and good".  This is a very personal choice…there's no right answer, and there's pros and cons with each choice (mastectomies aren't a piece of cake, physically or psychologically.)

My heart goes out to you…..it's a tough decision. Let us know what you decide.

Francksgirl - I'm glad you're at peace with your decision and wish you luck with your surgery. How nice of that woman to meet with you and your husband to share her experience and let you look at her results…very cool!

HI - Just information that was shared with me from my BS at a major top 50 cancer center. Lumpectomy + rads has the same outcome as mastectomy. As to disfigurement from lumpectomy, I had a 2+cm tumor. I have no disfigutement.  The cosmetic outcome depends on where your tumor is. Mine was inner lower quadrant.  You don't even see the surgical scar. You can always change your mind later and get a mx, if you cant get past your fear of reoccurrence. but once they do a mastectomy, you cant change your mind.

I was afraid of reconstruction, and Mastectomy comes with it a ton of risk as it is major surgery. When the doctor shared with me that lumpectomy +rads has the same outcome as mastectomy I was sold. Less surgery,less invasive, less chance of complications. I was sold.

I was 45 at diagnosis and just hit my 1 year post tx.

This site and cancer.gov are good places for information. You'll see that today, both surgical options provide the same health outcome.  Its a hard decision and you will ultimately do what is right for you. Good luck with all your decisions.

francksgirl - what part of a nipple sparing procedure involves your thigh?  My nipple sparing procedure meant that my nipples stayed right where they were.  You can also opt for nipple sparing one-step where you go straight to implants, and not use the expanders, although I did go the expander route.

Also the reason I chose a PBMX is because I have dense breasts and the biopsy chewed up my breast anyways so I thought why not get rid of my complicated dense breasts and have silicone implants.

This is a list of considerations that I put together a while ago for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy.  I've posted this quite a few 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. 

• 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 Tamoxifen or an AI? For those who are ER positive who have DCIS or a very small non-aggressive invasive tumor, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen/AIs provides 3 benefits: 1) They reduce the risk of local recurrence; 2) they reduce the risk of the development of a new breast cancer in either breast; and 3) they reduce 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/AIs will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox/AIs will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), is the most crucial and is not affected at all by the type of surgery you have. 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/AIs 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 area of cancer 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. As you read this board, something that's very important to keep in mind is that most women are thrilled 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 those affected by it, the real impact of the loss of your breasts usually doesn't hit until many months or even years later.
• 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.  But keep in mind that the fear that you feel now, and the fear that you are sure to have before your 6 month or annual screenings is almost certain to fade over time.  You just need to know yourself. If you are "the worrying type", you probably will worry regardless of the type of surgery you have. After a breast cancer diagnosis there is always something to worry about so those who are prone to worry will find some reason to worry. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it doesn't totally eliminate this risk and 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 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 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 list is helpful.  The thing to remember is that everyone's experience with surgery is different, everyone's pro vs. con list is different and everyone's emotions are different. Additionally, there is so much in this situation that you can't control..... how your breast looks after a lumpectomy.....  how you feel about your breasts after reconstruction.....  whether you breeze through radiation or have problems with your skin.....  whether you have pain from your mastectomy or reconstruction or not...  whether the fears you have now, just after you've been diagnosed, will still be as strong in 6 months or 2 years..., etc..  So don't make your decision based on what someone else did or the experience that someone else had or how someone else felt.  Make the decision based on knowing yourself.  Do what's best for you.

sjensen - I hope you're recovery goes smoothly. A mastectomy isn't easy, and your new look will take some getting used to. But you'll get through this, and may eventually decide on reconstruction. Fingers crossed that you won't need chemo. Take care.