Stage 1 choices lumpectomy or mastectomy

Mom2fourplusmore

I was diagnosed with stage 1 grade 1 IDC. They told me that I really only needed the lumpectomy and then radiation. I'm 43 so probably hormone treatments after. I'm not freaked out and I'm not worried that this will kill me...not this time anyways....soi wasn't even putting a mastectomy on the board. I was originally told my insurance wouldn't do the mastectomy. Now I found a second spot and had it biopsied yesterday. It may be nothing at all. But I'm thinking I may want to do a double mastectomy just for precaution. Plus I won't need radiation them. So less overall treatments done to my body. I'm not a fan of too many things being done to me. Is the mastectomy an overkill at this point

HuskerFan

Mom2four, I also was diagnosed with IDC. At the time of diagnosis, they told me it was most likely grade 2 and about 8mm. Then after reviewing my images, they wanted to biopsy two more spots on the same breast as the IDC. One if those was ALH and the other a benign fibroadenoma. I have extremely dense breast tissue and decided to do the BMX as I knew that I would worry for the rest of my life about something else lurking in that tissue. I had my BMX on May 26 and am very happy with my choice. I found out today that my final pathology showed stage 1, grade 1 IDC.

buras54

I was diagnosed with IDC in October of 2007. Stage 1, grade 2, tumor was less than 1 inch big and estrogen positive. I was told at first I could do a lumpectomy and then he went on to tell me that I could have the left breast removed but if I do that I should just have the right one moved to especially if I was doing the reconstructive surgery at the same time. He told me I had a 30% chance of getting breast cancer in the other breast and my thought was I only want to do this one time. I had a skin sparing double mastectomy with reconstructive surgery. I didn't need radiation or chemo! My oncotype test came back at a 12 so my return rate was really low. Oh btw, when the pathologist grabbed a random piece of my right breast tissue to look at after my surgery and he found precancerous cells that didn't show up on a pet scan so I would have been doing this all over again. My surgeon told me she would have done an mri on the right breast if I had decided to keep it and hopefully it would have shown up then. So, I thought like you did that I didn't have to worry about this cancer every again. I got it early, I was only stage 1, no lymph node involvement and I had a double mastectomy. I was good until April of 2012 when it spread to 1 bone in my shoulder. We radiated that and it hasn't come back or gone into any other bones. In August of 2012 we found it in my liver by chance. I was being tested for kidney stones and I told them to look very carefully because my cancer had spread and sure enough I had a spot on my liver so I did 8 rounds of chemo went into remission for 1 year and it came back, the same big spot so I had ablation done and it grew back in 6 months and then I had chemo again and it started to shrink but had to stop chemo because my surgeon did a routine ultra sound of my bread and found a spot on my left breast that was very tiny so I had to have that removed and did 35 rounds of radiation then had to go back to chemo for the liver. checked the tumors and they grew so he put me on a chemo pill called ibrance with the femara pill. ibrance targets the tumor directly in the liver and keeps the tumor from growing and the femara pill is to block the estrogen. This pill has only been out for about 16 months but I'm doing well on it and so are a lot of other patients that my oncologist has on it. so what I would like to say is that you should always have a couple of rounds of chemo or radiation just kill the microscopic cells that hang on to that skin for dear life cause they will come back to bite you in the ass. I asked my surgeon if they every did a study on stage 1 breast cancer patients who have had their cancer metastasized. She told me yes that 10% of stage 1 BC patients have metastacies and I happen to be in that 10%.

ChiSandy

Normally, the chance of contralateral IDC (absent a genetic mutation) is MUCH lower than 30%. I was 64 when diagnosed (now 65). My tumor was smaller than half an inch, grade 2, mitotic rate 1, ODX 16. (no chemo, but I am taking letrozole--perhaps, per recent studies, for the rest of my life). I was told by my BS that lx + rads would leave me with a 6% chance of local recurrence, vs. 3% for mx or even bmx. (Recurrences can pop up in the chest wall, clavicular or remaining axillary lymph nodes). My reasoning surgery-wise was “one step at a time" and not to do anything irreversible.

Sorry to hear that you are among that unlucky 10% who got bone & liver mets despite taking every possible precaution against it. I opted for just lx + rads (although in retrospect I should have also had a bilateral reduction to minimize radiation exposure, achieve symmetry and be able to buy bras cheaply in any dept. or discount stores--rather than pay through the nose in fancy boutiques or online, the only places to find very large cup/normal band bras). My breasts are mostly fatty, pretty much “open books." My followup mammo is next week. Am I nervous? Of course. But I've heard enough stories to know that eliminating the need for mammograms for the rest of one's life is no guarantee against recurrence...nor of true peace of mind.

Everyone is different, and has her (or his) own priorities--none of which ought to be belittled or second-guessed. Chips do tend to fall where they may. Hope Ibrance works for you for a long, long, long time. (And since you are too young for Medicare, you can--ironically--afford it better than we oldsters can, since Medicare Part D forbids the use of mfr. coupons or co-pay cards. If and when I need it I’m out $9K per month unless the law is amended).

Mom2fourplusmore

buras, I am so so sorry you have had all this happen to you. What a terrible disease Breast Cancer is. It's unpredictable and in relenting. It doesn't care who you are or what you can handle. It is what it is. I do appreciate you telling me your story. I realize we are all looking for "THE" right answers and we hope that if we just did "this" or just did "that" then it would all be ok. When really whatever we chose we will never really be sure we did the right thing. Why some people are lucky and others seem not to bento one knows. I will pray for you and your family. Thank you for sharing.

Mom2fourplusmore

ChiSandy, I was originally thinking the same as you. Why go all the way and remove it all if it wasn't necessary? I was thinking that this would be unnecessary trama to my body. Plus with a mastectomy you don't have any radiation so what if something was left behind and it wasn't treated. But now I'm thinkin, why am I leaving the breast on. I don't really care if I have them and why leave a possible issue if you could have prevented it. But in all reality there is NO sure answer. We don't know the answers and the doctors don't have the answers. If they did then they would just prescribe what they knew worked and we wouldn't be guessing for ourselves. Let's face it....we are all guessing. God bless you all

Judyhill1

a mastectomy is covered by the woman's healthcare law federal.

Mom2fourplusmore

judyhil, a friend of mine's mother was diagnosed last year and they denied her. She asked for it and they wouldn't give it because she didn't have enough reasons to warrant it. No gene and only stage 1.

Blessings2011

Mom2fourplusmore -

So sorry to hear of your diagnosis, but you are in the right place for information.

One statement in your post concerned me: But I'm thinking I may want to do a double mastectomy just for precaution. Plus I won't need radiation them.

I was diagnosed back in 2011, and after 7 different diagnostic tests and biopsies, they were pretty sure it was Stage 1A Multifocal IDC plus Multifocal DCIS. The Breast Surgeon told me that I wasn't a candidate for a lumpectomy because of the location of my tumors. She said that she would have to take such a large wedge of tissue, my breast would be deformed, and she suggested a Left sided unilateral mastectomy.

Well, with size 42DDD Original Girls, I doubted that they could achieve symmetry on the Right side with just a lift. Plus, the Radiologist said she could not rule out additional tumors on the right, as my breasts were very heavy and dense. Add that to the fact that my mom had BC, well, a bilateral mastectomy made sense to me, and here I am five years later knowing that it was still the right choice.

HOWEVER - as you have read - there are no guarantees going into surgery.

Because we did not know exactly what the BS would find when she got in there, I did not know beforehand if I would need chemo. And if any of the tumors were close to the chest wall, I would definitely need radiation. Everything depended on the Final Pathology Report.

Happy to say, there was no lymph node involvement, she got everything with clean margins, and the tumors were actually so tiny they seem to have been removed during the core needle biopsies. I dodged both chemo and radiation. But that's because of quite a few factors.

Many women think a mastectomy automatically rules out radiation, but it doesn't.

There are many reasons for each type of surgery. I wish you the best, no matter what you choose.

Blueorange

hi,

I hAve the same diagnosis as you and was about to post the same question. I had genetic testing done and am now waiting for results. I had decided in my meeting with my surgeon to have a lumpectomy with radiation, mammograms every 6 months, and reconstruction to match breasts. This would change if I was positive for the gene. Then bilateral mastectomy with reconstruction.

I had a friend in the room with me and she called today with some thoughts. Why not get it all done at once? I may be able to get an earlier surgery date, less scarrng with mastectomy according to plastic surgeon, no mammo every 6 months, less worry of recurrence. I have very dense breasts so it's easy to miss a mass.

Im finding this to be such a difficult decision

ElaineTherese

Just some thoughts.....

1) There is a greater likelihood of complications with mastectomy + reconstruction than lumpectomy + radiation.

2) Mastectomy + reconstruction are easier to do if you don't have to work or chase after young children. Reconstruction often involves at least two surgeries; it will require more if you need adjustments and fixes.

3) Depending on your breast size, lumpectomies don't necessarily leave a woman "deformed." I am a C-cup, and my breasts are still the same size despite the fact that the surgeon took a golf-ball sized amount of tissue out of the right breast. I do have a scar on my right breast, but reconstruction does not mean you won't have scars.

4) I chose to have a lumpectomy even though I was Stage III! I was going to have radiation no matter what. So, the question for me was whether I wanted the more invasive surgery, not whether or not I could avoid some potentially unpleasant treatment.

5) Mastectomies do not guarantee that you won't have a recurrence. But, you only have one set of real breasts to lose. I figure that if the cancer comes back, I'll do a BMX. But, if it doesn't? I got to keep my real breasts that have real sensation and avoided reconstruction.

Best wishes, ladies!

ruthbru

Beesie is one of the resident experts on the boards. I am copying a very well thought out post she did on this topic. Hope it helps:

"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!"

jwilco

Here's my thoughts....it's a personal decision between you and your team. You do what's right for you. All choices have a drawback. All choices suck. But, you choose the choice you can live with, the choice you where you can sleep at night knowing you did the right thing. It's so hard to be faced with all this. For me I went to my first appt not knowing what to expect. The team recommended a uni mastectomy...my husband and I were shocked! But after careful consideration it was decided they were right, it was the best choice for me. Don't be scared by radiation vs surgery. Sometimes you have to have both.

Good luck with your decision and treatment path.

Mom2fourplusmore

Looks like God made my choice for me. They found a second cancer about 2 inches away so I have no choice but to have the mastectomy. And they recommended having a bilateral mastectomy so this is where I'm at now. I'm not happy with the recovery time. This is my very precious summer with my kids and my oldest will be a senior so this is my last real summer with him. I do not want to lose a second of it. But God has his plans. So now we are considering the reconstruction at the same time. Too many decisions all at once. I really just want to go to sleep instead. Lo

dtad

Mom...so sorry. We all know how you feel right now. I too went from lumpectomy with IOR to BMX after a second malignancy was found on the preoperative MRI. This is why I think its so important have one before any treatment decisions are made. You might want to consider direct to implant reconstruction. It eliminates the fills and most likely a second surgery. Hang in there. I promise things will get better with time.

ruthbru

Would a second opinion be in order? Another thought would be to delay reconstruction or skip it all together (there are some good threads with ladies who have made that choice; and I know it's not for everyone, but just throwing it out there as an option).

LemonMom

I had stage 0 DCIS in one breast (right) found during an excisional biopsy (aka small lumpectomy). Was first on the path to radiation of single breast but then they recommended double mastectomy due to my extremely dense breast tissue. I had that done in January and they found more DCIS they couldn't see on the same side and pre-C stuff on left. I don't think it's overkill - it was actually my first gut reaction upon diagnosis - ie. how do they know there's not more? It is not an easy nor risk free road but imho 4 weeks post reconstruction, it's been worth it. I also don't see the rationale behind doing just one side. I would hate to go through this process twice.

LemonMom

I had stage 0 DCIS in one breast (right) found during an excisional biopsy (aka small lumpectomy). Was first on the path to radiation of single breast but then they recommended double mastectomy due to my extremely dense breast tissue. I had that done in January and they found more DCIS they couldn't see on the same side and pre-C stuff on left. I don't think it's overkill - it was actually my first gut reaction upon diagnosis - ie. how do they know there's not more? It is not an easy nor risk free road but imho 4 weeks post reconstruction, it's been worth it. I also don't see the rationale behind doing just one side. I would hate to go through this process twice.

LemonMom

RuthBru - This is an incredibly helpful self-survey. I am just seeing this 4 weeks post exchange. I wish I found this upon diagnosis - as it was I happened upon it 4 weeks or more post BMX. I am a very logical thinker NORMALLY so these structured questions would have been helpful during the incredibly emotional decision period. Thank you!!

ruthbru

It is such an incredibly stressful time that it is hard to think logically......and especially hard to think in the long-term, "How will I feel about the decisions I am making now 2 years, or 9 years, from now?" If you can talk yourself off the ledge & do so, I think you will be more satisfied with whatever you decide.