A lumpectomy and a re excision still no clean margins!

dmho

On Dec. 3 I had a lumpectomy to remove a very small mass of DCIS (8mm). They removed a 5.5 x 4.3 x 2.2 cm area. Five days later I got the call they did not get clean margins. I had re excision on Dec. 17. This time they removed a 1 cm horseshoe around the original area. Yesterday I got the phone call they did not get clean margins again  plus they found another 8 mm area. I get to decide now the next step. Try again or mastectomy. I am weighing the pros and cons of each. My question is I know you can have more than one area but if it has not spend out of the area then how come  they can not get clean margins? Everything I have read says that DCIS is in place and the cancers cells have not spread to surrounding tissue so I do not understand. Am I missing something here? Any help would be appreciated. I am so confused right now.  

redsox

dmho, 

"Everything I have read says that DCIS is in place and the cancers cells have not spread to surrounding tissue so I do not understand."

DCIS (when it is only DCIS) is "in situ" which means it has not become invasive and broken through the walls of the duct.  But it can spread in unpredictable patterns through the ducts and is often not visible to the surgeon's eye or to imaging.  The surgeon makes an educated guess about how much tissue to take to get clear margins while trying to keep the amount small enough to leave a breast worth conserving. 

It is common with DCIS to have more than one excision to get clear margins or margins good enough to proceed to radiation therapy.

Beesie

DCIS is contained within the milk ducts and because of this, DCIS cancer cells cannot move into the open breast tissue and from there, into the nodes or the bloodstream.  This is what is meant when it's said that DCIS cannot spread.  It can't spread into the nodes or the body.  But DCIS cells are cancer cells and like other cancer cells, if they are aggressive and in growth mode, then they multiply.  And when they multiply, they have to go somewhere so what DCIS cells do is spread within the ductal system.  Think of the ductal system as being like a bowl of spaghetti.  The spaghetti is all intertwined and it fills the bowl from edge to edge.  That's like the ducts in your breast.  DCIS can travel anywhere within that ductal system, which means that it can fill the breast.  Mine did.

Because of the way that DCIS spreads out and travels within the ductal system of the breast, women diagnosed with DCIS are more likely to have multifocal (DCIS in more than one location within a quadrant of the breast) and multicentric (DCIS in more than one quadrant of the breast) breast cancer than those who have invasive cancer. 

The other thing about DCIS is that it sometimes "skips".  What this means is that there might be an area of DCIS within a duct, then a few millimeters with nothing, and then the DCIS starts up again.  This is why getting good margins, particularly if you have multifocal or multicentric DCIS, is so important. 

For those who have a small single focus of DCIS - which is the majority of women diagnosed with DCIS - none of this is an issue.  But for those of us with larger amounts of DCIS or DCIS in more than one location, all of these factors about how DCIS grows and spreads become very important.

Edited to correct a typo / misstatement ("DCIS in more than one location").... I should know better than to respond when I'm in a rush!

dmho

Thank you redsox and beesie I was not following what was being said to well. Thanks for putting it in english so I could. I think I am just so overwhelmed that I am beginning to question everything now.

SarahsMom

Hi  - I am so sorry about the margins and new area of concern, I know this is overwhelming. When is your next appointment, is it with a breast surgeon?  Hugs to you!!

3monstmama

I am sorry you are dealing with this. 

Have you spoken to a plastic surgeon yet?  When I was in the deciding stage, one of my potential BSs recommended a partial mastectomy or lumpectomy with reconstruction.  Then I spoke to a PS who said that if I was in his office post lumpectomy, something will have gone VERY wrong as the point of the lumpectomy was to avoid plastic surgery and reconstruction.  Plus if I had to have radiation on the lumpectomy site, it impacted what would work best as far as reconstruction efforts.

I really found that talking to the plastic surgeon helped me a lot.  Breast surgeons know how to remove breast cancer, plastic surgeons know how to get you back to your new normal.

good luck.

SJW1

dmho,

After my lumpectomy for DCIS in 2007, they said I did not get clean margins and I needed a mastectomy.

Since I did not want this for a non-invasive cancer, I was advised to get a RODEO MRI. The idea was that if we could see where the residual DCIS was, the surgeon could do a more tailored re-excision, rather than a horse-shoe, or blind excision.

As it turned out, the MRI found two suspicious areas, both were biopsied and were benign. I then got a 2nd post-surgical pathology opinion from Dr. Michael Lagios, a renowned pathologist and DCIS expert with whom anyone can consult. He disagreed with my local pathologist and said my margins were clean and I did not need a mastectomy.

Additionally he calculated my recurrence risk without radiation at only 4 percent. With a risk that low, I opted to omit radiation as the 50 percent risk reduction it provides was not enough benefit to outweigh the risks for me.

As you can see from the posts you got, there are many different approaches you can take to your DCIS. Only you can say what is right for you.

Please feel free to send me a PM if you have any questions at all that might help you with your decisions.

Hugs,

Sandie

 

dmho

I met with my BS and she agreed to an MRI she does not think it will show anything but she said if it gives me peace of mind then it is worth it. I also have an appt. next week for a second opinion. Before I make my decision. I think my BS really feels that a mastectomy is the way to go but will let me make the decision. Right now I am gather info. and waiting till I get the MRI and second opinion. HUGS to all 

CrunchyPoodleMama

DMHO, I hope the MRI gives you what you need to make a decision. I will say that I was in a similar situation, except that my re-excision did show clear (but close) margins, but the scan a few weeks later showed that a few microcalcifications had been missed.

My BS pushed for a mastectomy (something I absolutely did NOT want to do in spite of earlier recommendations that I do so). Instead, I had them biopsied *just in case* it was just scar tissue or something, but sure enough, it was more DCIS.

Kicking and screaming (or at least dragging my feet), I reluctantly went ahead with a modified nipple-sparing mastectomy.

After getting back the final pathology last week, I am really glad I finally did the mastectomy, because there were not one but two other tiny areas of DCIS -- and one of them was grade 3, the kind most likely to turn invasive. This time, my closest margin was 1.3 cm (woohoo!). If I'd had another re-excision, I wouldn't have gotten anywhere near to that wide of margins, and with the two unexpected foci of DCIS, I might not have gotten clear margins at all.

All that is to say... if there's any question that the remaining DCIS could be more extensive than it previously seemed, do whatever it takes to get it out... you don't want to risk it traveling throughout even more ducts and possibly turning invasive.

dmho

Thank you everyone for your advice. I am waiting on the MRI results and to thrusday for a second opinion before making my decision. Thank you CrunchyPoodle Mama for you advice That is a fear I have is that even if the MRI does not show anything that there will be small amounts lurking around and it will show up again down the road. I not sure I want to live waiting for the shoe to drop as the say. Wondering when it will show its ugly face again. I know that is one thing I will think about when deciding. HUGS to all

SarahsMom

dmho, I think it is great that you're getting a second opinion. Sending you warm thoughts and a hug as you work through this difficult week.

dmho

I had my appt yesterday for the second opinion. Was told basically the same thing, the only different is this doctor would do what she call a central lumpectomy. She would remove the areola and nipple and the area behind it. She could not say she would be able to get clean margins for sure and I could not get her to even give what she felt the chances was of getting them. To me it almost sounds like a partial mastectomy. My MRI did not show any areas of concerns. But my BS was quick to remind me that it only means there is no large areas and no invasive areas. That there still could be small areas. Which we know there is being we can not get clean margins!! So now I must decide which way to go. I think I am starting to lean towards the mastectomy. My reason is because I do not want to live with the fear of when it is going to show its ugly face again. I am actually considering bilateral just so I would not have to face on the right either. If I did it for that reason would I be doing it for the wrong reasons? I guess what I am asking is it wrong to go to the extreme out of fear of what might happen in the future. This is one nightmare I do not want to go though again and I have very low grade. My fear is that if it came make it would be invasive. I know only I can make the right choice for me but any input would be helpful and appreciated. HUGS to all and thank you in advance.

Beesie

dmho,

Many women make the decision to have a bilateral because they do not want to deal with having breast cancer again and they therefore want to minimize the chance that this can happen.  That's a perfectly reasonable course of action. But that is different than reacting out of fear.  Personally I don't think that it's wise to make a decision that is so major, so life-changing, out of fear. Keep in mind that right now, your fear is the highest that it's ever going to be - you were just diagnosed and you haven't finished your surgery yet.  Over time, once you get through this and it's in the past, the fear will fade, but the affects of having a bilateral mastectomy will stay with you for the rest of your life. 

My advice is that before you make this decision, you should investigate what's involved with a mastectomy.  Decide if you want reconstruction, and if so, what type.  Talk to a plastic surgeon. Understand completely what's involved (mastectomy with reconstruction is not a quick or simple process; in most cases more than one surgery is necessary), what the risks are, what the long-term implications are. And talk to an oncologist.  Ask about your risk to get BC again.  Is this is risk level that scares you and that you don't feel you can live with, or is the risk level not as high as you expect?  I thought that my risk to get BC in my remaining breast would be in the range of about 40% and I was so surprised when my oncologist told me that it was more in the range of 20%. I would have found 40% difficult to live with.  At 20%, I have no problem - to me that means that there's an 80% chance that I won't ever have to deal with BC again.  

The decision to have a bilateral mastectomy might be the right decision for you.  Or, upon investigation, you might decide to go with a single mastectomy only, or even attempt the re-excision. What's most important is that you make the decision that you are comfortable with and that you can live with for the long-term. Make an educated decision; don't make a decision out of fear.  

dmho

Beesie

thank you for advice. My one one question is if a person has had a bilateral mastectomy because they do not want to have to deal with the cancer coming back and doing because you fear it coming back the same thing? The reason I fear it coming back is because I do not want to live this nightmare again. I have been researching what is involved and have talk it over with my BS. She will not even schedule the surgery until you met with a PS. I have been told the changes of recurrence and I am not sure I like the odds. Even though they are low. I keep falling in the low percentage now and feel I will again.   

Beesie

The way I see it, there is a difference between a fact-based decision and a decision made out of fear. You can make a fact-based decision because your want to reduce your fear (you want to give yourself peace of mind) but that's different than making a decision out of fear. If you know your risk to have a recurrence and your risk to get BC again and you know that this is a risk level that will make your constantly nervous, then you are making an educated decision based on your personality (i.e. understanding how you deal with risk). That's different than making the decision based on an irrational fear (i.e. not even knowing what your risk is but just being fearful). If you understand everything that is involved with having a bilateral, if you understand the long-term implications of all the options (re-excision, mastectomy, bilateral mastectomy), and if you make your decision based on this knowledge and understanding, then this is not the same as making your decision out of fear. 

I've seen women on this board who've had invasive cancer who've decided to have a bilateral mastectomy so that they could avoid radiation and chemo.  After the surgery, they've discovered that because of their diagnosis, they need to have radiation and chemo anyway. They are upset and disappointed.  That's because they didn't make an educated decision; they likely made their decision out of fear. I've seen women decide to have bilaterals so that they can eliminate their risk of BC. I've seen some of these women come back later with a recurrence (either local or distant) or a new BC, totally shocked that this could happen and saying that they'd thought they'd eliminated their risk by having a bilateral.  Again, that's a decision made out of fear rather than an educated decision. I've seen women decide to have bilaterals for cosmetic reasons, so that they have a better match after reconstruction. Then they have problems with reconstruction (sometimes on the prophylactic side) and end up without a good match at all or require revision surgeries. I've seen the disappointment and frustration and anger when that happens.  On the other hand, if someone decides to have a bilateral for peace of mind, knowing that she may need radiation anyway, or knowing that she'll need chemo, knowing the implications of reconstruction (if she chooses to reconstruct), knowing that there is still a possibility of a local recurrence or new BC and that a bilateral does nothing to reduce the risk of mets, that's an educated decision, not a decision made out of fear. To me it's all a question of whether or not you know the facts and the risks before hand, and make your decision - whatever it might be - with full knowledge. 

In your post you've mentioned that you've been told the chance of recurrence.  Recurrence is one issue after a diagnosis of breast cancer.  A recurrence will affect the breast that had BC.  But a recurrence can't happen in the other breast.  Since you are considering a bilateral, do you know your risk to get a new primary breast cancer in your other breast?  That's some of the info you should have to make the decision on a bilateral vs. a single mastectomy. 

You have to make the decision that's right for you, but you can't know what's right until you understand all your risks and the implications of all the options.  That's just how I see it. 

dmho

Thank you Bessie you have given me lots to think about.

rianne2580

Bessie,

You are so logical. Your statement above makes all the sense in the world, but there are emotions in many of us that cloud logic. Maybe because of the statements you've made, makes me look at my situation from many different angles. My MRI showed a normal healthy left breast and a right with 2 suspicious spots. One spot had the DCIS dx that resulted from the needle biopsy. Second spot is where the original biopsy was in 1994, maybe scar tissue and calcifications, I don't know yet. Radiologist suggested another needle biopsy on that area.

 I understand when there are 2 spots in different quadrants the suggestion is mastectomy. Is that true?

 Rianne

Beesie

Rianne, usually if there is cancer in two different quadrants of the breast, a mastectomy will be recommended.  But if the areas of cancer are small and/or if the breast is large, some surgeons will be willing to attempt a lumpectomy first, to see if clear margins can be achieved.

As for being logical, yes, that's me.  We all get the emotions and we all have the fear.  For me, I know I'm lucky in that I'm able to use logic to overcome the fear and to force down the emotions. That's why gathering the facts is important to me, because I can use the facts to tell myself that my fears are irrational.  Sometimes it turns out that my fears are totally rational and in those cases, I take the appropriate action.

For both you and dmho, here's something that I created some time ago in response to someone's question about whether to have a lumpectomy or mastectomy or bilateral mastectomy.  It's a list of questions to ask yourself to help figure out whether it would be easier for you to live with a lumpectomy or easier for you to live with a mastectomy.  It's probably not an all inclusive list but it does cover a lot of the things that you should consider:

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 it turns out that you have invasive cancer in addition to DCIS, and the area of invasive cancer is very large or you are node positive.  

Do you want to avoid hormone therapy? If you are ER positive, you are almost certain to be prescribed Tamoxifen if you have a lumpectomy. Tamoxifen may be considered if you have a single mastectomy, but it will be optional (the benefit will be protection of your remaining breast). Tamoxifen will not be necessary if you have a bilateral mastectomy, assuming that your final diagnosis remains pure DCIS (i.e. with no invasive cancer). Tamoxifen reduces the risk of distant recurrence (i.e. mets) in addition to lowering the risk of local recurrence which is why it is often still recommended for those who have invasive cancer, even if they have a bilateral mastectomy. But distant recurrence is not a concern for those who have pure DCIS; only local recurrence is a concern.

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? 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 reconstruction on both sides at the same time), will you regret the decision to remove your breasts? 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 and/or bilateral mastectomy? 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.

How do you feel about losing the natural feeling in your breast and your nipple? Are your nipples important to you sexually? Remember that a mastectomy will change your body for the rest of your life. Are you 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). For some, loss of breast/nipple sensation is a small price to pay; for others, it's a huge negative.

How will you deal emotionally with the loss of your breast(s)? Will you be glad that they are gone because they were the source of your cancer, or will you be angry that cancer forced you to lose your breasts? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but also try to think about how you will feel in a year and in a few years, once this diagnosis is well behind you. Almost all 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 as bad as they feared. The real impact of the loss of our breasts doesn't hit most of us until 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 is gone? Or will the loss of your breast be a constant reminder that you had breast cancer?

Appearance issues aside, do you know your recurrence risk 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. Be aware however that a mastectomy doesn't totally eliminate your risk of local recurrence (i.e. in the breast area) and 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 DCIS does not recur in the contralateral breast so your current diagnosis does not affect your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again.

How will you feel if you have a lumpectomy or single mastectomy and 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?

How will you feel if you have a mastectomy or bilateral mastectomy and aren't happy with the reconstruction results? Will you question (either immediately or years in the future) why you made the decision to remove your breasts? Or will you be satisfied that you made the best decision with the information you had?

There's no right or wrong answer to any of these questions; it's all a question of you feel and how you will deal with all these situations.  Hopefully thinking about these questions helps you with your decision and makes you more comfortable with your decision, whatever the decision might be.

Hindsfeet

Beesie, so glad you posted your last thread. I needed to hear that. Emotionally I don't want to lose my breast. I prefer a lumpectomy...especially since my new cancer is in the good breast. Most likely, I will not do conventional therapy and for that reason you would suggest a mx. This is something I've considered if I got cancer again. I have another complex problem that makes a mx difficult. I'm hoping by the time I see the breast surgeon I will have somewhat worked through this question.

snowflower

I have been through a similar situation. Biopsy 8/10, lumpectomy (9/12/10 for a small area of DCIS near the nipple. The margin had a tiny area that was not "clean" so they said I'd need another re-excision with radiation or a mastectomy with no radiation. After the lumpectomy I had a mammogram and that showed the area that looked like it could be DCIS, the pathology report also indicated it. Because in this one breast I'd had 3 biopsies plus the lumpectomy (2 benign biopsies 10 years ago) they thought a mastectomy would give better cosmetic results, so I went in 12/15/10 for the mx and immediate reconstruction with diep flap. What began as a "little DCIS"  became a real fiasco ending with an mx. It's nice to by pass the radiation, I'm glad for that. I wish you luck with what ever route you decide to take. I went for a 2nd opinion and met with 3 breast reconstruction plastic surgeons before I decided on a course of action. More peace of mind that way, although it is more work it's worth it.

dmho

Beesie,

 Thank you so much for your list of questions. It really did help me look at things more logical and less emotional. After considering all the facts I have decided on having a mastectomy with reconstruction. My BS has several PS she likes to work with so she will be setting me up with the one she feels is best for me. I will then go over all options with them to decide just what is done. Thank you everyone for your support.