diagnosed today, lumpectomy or mastectomy

ginafish

I was just diagnosed today and my surgeon says I am a good canidate for either a lumpectomy or mastectomy. I am 38 and it is a grade 2 cancer. Does anyone have any opinions on which option to take?

I forgot to mention it was found in my lymph nodes too, don't know if that makes a difference or not.....

MakeLemonade

I think that is a personal decision.  Somewhere on this site is a post where they go over the pros and cons of each.

I was also a candidate for both and decided on a lumpectomy.  I do have to go back for a re excision next week, but the surgeon is confident that he will get it all.  My tumor was a grade 2 and I am a Stage 2A.

At the time I waffled over my decision.  I would decide one way, then read something and change my mind. Then back again.  Decided on the lumpectomy and am happy with my choice.

As I have lymph node involvement, plus am HER2+, I am on the hook for chemo and radiation, regardless of what I would have had done.  

I am also fairly "well endowed", and the cancer was all in the upper, outer quadrant of one breast, I shouldn't have too much disfigurement.  

But it all comes down to what you can live with ... find that pros/cons post :-)

Good luck with whatever you decide!

Moderators

Hi Ginafish,

In addition to the helpful advice you have received and are sure to receive here, you may be interested in checking out the main Breastcancer.org site's page on Mastectomy vs. Lumpectomy to help you weigh your options.

We hope this helps!

--The Mods

MarieDiana

I just got diagnosed this week with grade 3 cancer.  They say I will no no doubt need chemo.  I will also need radiation if I get a lumpectomy.  The doctor recommends a lumpectomy but I am not certain I want to have radiation.  It feels to me that radiation would add more bad 'stuff' to my body.  So I am torn between what the doctor recommends (which I should probably follow because he knows best) and the fact that I think radiation would simply be more harmful to me.  I guess my question to anyone who has had mastectomy is, how was the operation for you, was it difficult to go through?   Has anyone had both lumpectomy and mastectomy?

msphil

hello sweetie, I was diagnosed while preparing for my wedding, and so I did have option of lumpectomy, but my husband and I thought that L mast, would give me a longer survival, oh also my surgeon, even though i wanted to go into my new marriage with both breast I did choose mast, am now a 20 yr Survivor(Praise GOD) and am here to give back and to encourage others to have HOPE, it is indeed a personal choiice.msphil(idc,stage2,0/3 nodes,L mast, chemo and rads and 5 yrs tamoxifen)

cookiegal

I am biased towards lumpectomy when possible.

I guess a big question is are you planning reconstruction, or are you comfortable with a prosthesis?

Each reconstruction has it's pro's and con's.

Long term mortality is slightly better with lump and rads, but just slightly.

Chance of getting bc in the same breast is higher with the lump, but I think the difference is 5 vs 10 percent.

There are physical consequences to mastectomy, they vary woman to woman.

Also you could have dirty margins on the mast and still need rads.

There are of course women who are very happy with mastectomy and wouldn't have it any other way.

momand2kids

Hi

it really is a personal decision-- I am also on the side of lumpectomy whenever possible.  You can always go back and take more--and if it is not medically necessary, why do it?  My surgeon actually never even offered me a mastectomy.  However,  I had a lump that was easy to reach, no spread, etc. So all the indicators were good... but, again, it is a highly personal decision. I have never regretted it.... 

Holeinone

Gina, my surgeon was very pro-lumpectomy, same with my personal Dr. I had the choice of course. I am happy with the lumpectomy. I had a lot of cancer in the axillary. If it got out of the gate, taking my breast off would not change that. 

I totally understand why some ladies need/want a mastectomy. Reconstruction can be difficult, not always. Give yourself time to read & decide....good luck...

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.

*also, do not have a mastectomy solely to avoid radiation. Depending on your stage and other tumor characteristics, radiation might be recommended even with a mastectomy.

RMlulu

Hi - ugh the choices we must make.

I bumped a great thread...DCIS how do you choose...Bessie's presents great prison and cons

It is very personal...you will make the right choice for you?  Trust you, ask question, than don't look back move forward...the waiting is the hardest...once you have a plan it gets easier...you will be fine and you can do this...breathe, we will be in your pocket!

ruthbru

The Beesie RMlulu is referring to is one of our resident experts. I am copying over Beesie's great post about things to consider when making this difficult decision:

"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. 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:

No Survival Benefit For Mastectomy Over Lumpectomy

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!"

LovieLovie

I started out with a lumpectomy but tumor margins were not clear so I had a mastectomy as a second surgery.  

cookiegal

go Bessie! Break it down girl!

cookiegal

There is one more choice for the large breasted.

Lumpectomy/reduction.

This gives you a very wide margin, and a reduction if you need one.

We have a thread somewhere on this.

jillian2120

Just so you know grade is not the stage....I was diagnosed Jan 30th with idc grade 3 e/p +....nodes negative, braca negative, only in my right breast tumor was 3 cm... Had double March 3rd, my surgeon was very supportive, could have done lumpectomy, I'm so glad of my decision. I start my 12 weeks of chemo Monday and then will do reconstruction when finished with chemo.  The mascestomy was nothing, no pain, just some odd sensation which is normal.  I am sorry your dealing with this but trust me you will learn so much in the next few weeks.  It really is a personal decision. I am 46 yrs old, they will usually stage you after surgery so they look at things under the microscope,  I was stage 2..... Best of luck to you if I can help let me know.... prayers your 

Wren44

I had both. The lumpectomy margins were too close, so BS went back in for wider margins. This turned up a new tumor which was not visible on the mammogram or ultrasound. It was slightly larger and higher grade. I elected mastectomy at that point. I didn't want reconstruction.  By the time a 3rd surgery was done my breast would have been half gone anyway.

Pway84

I was diagnosed in Sept. 2013 with DCIS, they found it in 2 locations 12 and 3 o'clock. After talking with my doctor and much prayer I opted for a lumpectomy. The margins were not clear and invasive cancer was found. I had to do the mastectomy. Not what I wanted and still adjusting to it all. It is a personal decision.  The post by ruthbru is great.

crazyride43

Another option if you know there are positive nodes and will need chemo, is chemo prior to surgery (neoadjuvant) to both shrink the tumor and see the chemo in action.  My tumor was on the larger side which would have made a lumpectomy less cosmetically acceptable.  After chemo the tumor was no longer visible on MRI and the lumpectomy has left barely a scar and no disfigurement at all.  It was also really encouraging to feel the tumor shrinking week after week, knowing the chemo was doing it's job!  Also, radiation was not terrible.  I worked full time throughout. My skin got red and a little sore, but no lingering side effects.  I know I can still have a mastectomy in the future if needed, but for now I still have both my breasts and all the sensation.  I am grateful to my medical team for pushing me in this direction, because my first reaction was to just "get them both off"!!!!  Now I'm so glad I trusted their expertise.

WOT

hi ginafish,

I,ve had lumpectomy & radiation twice (both sides). I've now had a bmx & in the process of reconstruction. I can tell you my experience is that the lump & rad was pretty easy; the bmx & reconstruction is hard (but doable). But that was just my experience & it cannot be predicted what yours will be.

I will mention a couple of other considerations-- radiation may limit later reconstruction choices, mx may result in some permanent issues such as nerve pain.

I wish you well in your decision. 

Alice

lgoldie

Very interesting thread.  I am almost all good, super small tumor .8 cm, no nodal involvement, BRCA negative, BUT Triple Negative Grade 3.  Surgical Oncologist at Mayo's first sentence was lumpectomy with chemo and rads.  Now mind you, I was "ready to whack both off".  He said your chance of survival for 20 years is NO BETTER WITH MX THAN LUMPECTOMY.  Hard, hard decision.  I work for a doctor and we discussed it.   Went with lumpectomy...if needed more would only be out lumpectomy.  Had great margins and am now in the middle of chemo (delightful).   Prayed with my husband and we decided to trust doctor's opionion since we prayed for right doctor.   Everyone's stats are different.  I am trying to go day by day

jessica749

MARIEDIANA!  Please know that the doctor sometimes does NOT know best!!!

When it comes to surgery, to cancer and many other things, of course the doctor knows better than you and of course the doctor has more experience with people who have this situation than you do, but PLEASE PLEASE PLEASE KNOW that YOU KNOW BEST what kind of surgery is most right for you on this highly personal decision. Your doctor is making a medical decision-what is surgically necessary. And many good surgeons believe that to do the least surgery necessary is best.  I think a lot of good breast surgeons are reluctant to take off a breast if medically, it appears unnecessary. And that makes sense.

I was not a candidate for BMX but got one anyway.  My surgeon knew best on so many many things of course but if I listened to my surgeon, I wouldn't have done it. At least not at first.  But I am very glad I did.  Along with (likely) no radiation, the idea of never getting another mammography appealed to me. (Mammography missed my bc).  I have so many doctor appts and screenings and concerns, I cannot tell you how happy I am that annual mammograms and ultrasounds/or MRIs are no longer a part of that !

Do I miss real breasts? OF course. But if faced with the same problem I'd make the same choice again.

jessica749

The truth is there are so many unknowns for the future…I tried to play out all the possibilities of various decisions, good and bad, and decided which ones I could most comfortably live with or let's say regret least. I don't know if that makes sense, or is helpful, but it's part of how I made my decision.

gram25bz

wow, my dilemma too, lumpectomy or mastectomy?I try and imagine the outcome of both surgeries. meeting with my surgeon this coming Wednesday, maybe after that appointment and his recommendation I'll be better informed to make the right decision for me. God Bless everyone. 

hwhranch

A lot of it depends on your treatment and the size of your tumor.  I was opting for a lumpectomy the whole time.  Even though the chemo shrank the tumor in size, it still left 3 tiny spots on the outer perimeter of the tumor and lumpectomy didn't make sense then.

njmae

I was diagnosed at the end of January with high grade DCIS, 3 cm., left breast.  In 2011 I had a low grade tubular Stage 1 in right breast.  I had enough of dealing with BC so I chose a BMX.  Didn't want radiation and it appeared that it wouldn't be necessary, although you don't know until final pathology.  The breast surgeon said she could do a lumpectomy but I would need radiation.  Had both removed on March 19 with immediate reconstruction. I am 64.  Well, what do you know, a DCIS lesion was also in the right breast, undetected.  I am so glad to have made the decision I did.  And, by the way, the recovery has been pretty easy.  Just got back from a 3 mile walk.  I had bad breasts and they had to go.  No grieving here.  I went with my gut feeling, respected the doctor's opinion, but I had a different one.

Victoria55

Hello! 

    I had cancer in one breast! I found for myself I could never go through this whole process again. I would always worry about having cancer in the other breast. I did a double mastectomy only removing the one breast nodes that had cancer. I did reconstruction at the same time. Which they put tissue expanders in and expanded to the size I wanted. Just got my implants last friday. I'm going back to work tomorrow. I'm so pleased with the way my breasts look. You may not here this much! But they are really prettier than what I had naturally. I had a plastic surgeon who was Awesome!! I'll do the nipples in about three months. 

I would get a Oncotype DX Test done.  Being on how they rate your cancer it would mean No Chemo, No Radiation! Without radiation you get the best results in reconstruction! Feel free to ask anything! Anything to help others!

sandra4611

I wish there was more information given to women about the side effects of radiation before they make their decision. In some ways, it's not nearly as scary as you think because strides have been made in recent years. But side effects have not been eliminated and you need to know what they are so you can decide if you are willing to accept them. Those of you who are at that crossroads, read some of the radiation threads. Once I researched radiation and spoke to a radiation oncologist, I was shocked by the cavalier way some doctors toss it out. "Oh, you can have a lumpectomy and rads. Your survival rate will be the same." Yes, maybe so, but you will also have to live with radiation side effects which are not insignificant. Many of us don't have a choice. Our diagnosis demands rads and we will just have to deal with side effects from that and other treatment ahead of us. That's a different story. But if your diagnosis means you have a choice, make sure you are informed before you head down that road.

I spoke to an oncologist and found out about my chances of significant side effects with tamoxifen and AI's. Since my cancer had not become invasive yet, mastectomy meant I would not have to take hormone therapy at all, which was appealing, but not a big enough reason to choose it. Seeing a breast surgeon and researching problems also showed that mastectomy wouldn't be a piece of cake. Potential side effects were scary and I had to decide if I could accept them if they came. Lumpectomy carried a risk of having to go back for more if the margins weren't good enough, the altered anatomy in my particular case would be a challenge to conceal, and there was a chance I would end up with a mastectomy anyway which would mean a third surgery. There were NO GOOD OPTIONS!

I chose mastectomy when I learned that rads could damage my heart and other organs. Those were side effects I could not live with in more ways than one.

Only you can decide what's best. BUT, you should know what you are getting yourself into, no matter which path you choose. You must be willing to accept the consequences of your decision.

MarieDiana

Wow!  All those posts, it made me cry for 2 reasons because I felt a lot of people understood and cared enough to reply, and I was so sad to see how many women are affected by this... It is terrible, my heart goes out to all of you and thank you for your kind words!

I met with the doctor today, he said I would probably need the radiation anyway (about 95% certain).  He really insisted on having a lumpectomy.  The cancer that I have is Lobular Carcinoma and it says that because it is estrogen dependent, it has a slighly higher risk of being in both breasts.  Has anyone had that type?  Anyway, all that to say, I really still don't know what to do, I don't like radiation but I will probably need it anyway so I may as well go with a lumpectomy.  Do you think getting a masectomy will reduce my risk of having cancer again?  I'm so confused!

Renee51

MarieDiana, I would be asking more questions. Since he says that "because it is estrogen dependent, it has a slightly higher risk of being in both breasts" sets off warning bells to me. With a mastectomy, the breast is gone, so the risk is significantly demenished. Shew, these are just my thoughts, I was diagnosed yesterday with DCIS and have decisions of lumpectomy or mastectomy. Since it was steriotactic biopsy I don't know all the in's and outs of what is going on and won't know until I have the area removed. With that said, I really DO NOT want radiation, so I am leaning toward mastectomy. If i decide on mastectomy, I am going to do bilateral. I just do not want to have to worry and be consumed day in and day out about whether cancer is in another part of my breast or even in the opposite breast. 

Just typing all this, I realized I am pretty sure I have my answer already. This is soooo hard.

sandra4611

Marie, I would look for another doctor. No physician should "insist" on a procedure. That is YOUR decision. By the way, he works for you, not the other way around. He doesn't get to experiment on your body and then, if things don't go the way he thought, throw up his hands and walk away. YOU have to live with this decision, not him. Outrageous!!

Please go to some of the threads that deal with ILC (invasive lobular cancer) and LCIS (lobular cancer in situ). That will help you understand what options are open to you and why. If you decide to stay with this doctor, at least you will be educated enough to ask the right questions and understand the answers he gives. There are 15 different active threads on lobular cancer on this website.

As per diagnostic tests on both breasts, I thought I had ductal cancer (DCIS) in one breast but after my bilateral mastectomy, lobular was found in the other side (LCIS). I was angry at first because it had been missed on several mammograms and an MRI. Then I found out LCIS and ILC are sneaky and often missed, especially in women who have dense breasts. (Dense breasts have nothing to do with age, by the way.) As per my bright young female oncologist at a major medical center in the U.S, I absolutely made the right decision to have a double mastectomy. She says the most important thing is that LCIS is more worrisome than DCIS. It is a marker for additional cancer in the other breast and elsewhere. It is slow growing and usually doesn't become invasive. Only 10-15% of breast cancers are ILC (there are quite a few different types.) But ILC is more difficult to treat. Little research money is devoted to it because it is less common.

Because I chose bilateral mastectomy and neither of my cancers were invasive, I do not have to have any further treatment. No radiation, no chemo, and no hormonal therapy. The oncologist explained that LCIS only grows in lobules and DCIS only grows in ducts. Since I don't have either of those anymore, new LCIS or DCIS can't grow so recurrence of either of those two types cannot happen. There are other types of breast cancer that could occur in the very tiny bit of breast tissue that remains after a bilateral mastectomy, so yearly check ups will be necessary. But the chances of me developing another type of cancer is only between 1%-2%.

Taking Tamoxifen for 5-10 years can reduce that by up to 50%...sounds impressive until you realize that we are only talking about reducing it to 1/2% - 1%. The oncologist said there is a greater chance of me developing leukemia from Tamoxifen than it helping me in any way. There will be no chemo because there are no more cancer cells to kill. They never escaped the lobules and ducts and the margins of clean tissue around them were huge with a mastectomy. No radiation is necessary because there is no more tissue to radiate! The side effects from radiation can be significant.

Even though with cancer you can NEVER say you are cured (because to date there IS no cure) the best you can say is that your current status is NED (No Evidence of Disease.) So, for me, the decision was between (1) lumpectomy with radiation & hormone therapy that come with some bad side effects - some of which are permanent, all the while worrying if (or when) the cancer would return to that breast or show up in the other breast  or (2) double mastectomy with a long recovery & a chance of complications but knowing I had done everything possible to keep me NED. One bad choice vs. another bad choice. I chose the one which gave me the most peace of mind. Your choice may be different. There is no right or wrong.  

Infobabe

Marie, I don't understand why you would need rads if you have a mastectomy.  The only reason I can think of would be because you wouldn't be getting all the cancer out of your body.

Your decision will based on your personal situation.  I too, went through all those thought processes two years ago.  Mine was pure DCIS, 9mm.  I was also 76, which plays a huge role on what you decide.  After the lumpectomy, I was put on the fast track for rads, no questions asked.  However, while healing from the lumpectomy, I knew too much.  I refused rads and was going for a mastectomy, no reconstruction.  Finally, I did nothing, no rad no MX, as a result of a second opinion with Dr. Michel Lagious, world famous pathologist expert on DCIS.  I am so glad I did.

I guess my point is, every case is different, but a second opinion might help your decision making.  Us women don't get the MX plus rads.