DCIS

revere, the main Breastcancer.org site has an article that specifically addresses this dilemma faced by so many women, Mastectomy vs. Lumpectomy. It covers the personal and medical factors that influence this decision.

Best wishes for your sister, and for you as you support her.

Judith and the Mods

Just wanted to throw my two cents in.  I had widespread DCIS in my breast.  I opted for the mastectomy and glad I did...they found a very small 4mm area of invasion.  I am glad I knew that because it changed my treatment plan.  I know that it is not always the case to find something hiding, but you need to be sure you are making a decision that you can live with.  Good luck to your family!

Michelle 

Revere,

Your sister-in-law may feel this way because intuitively it doesn't seem to make sense that the treatment for a non-invasive cancer is so drastic. Also, even untreated, sometimes DCIS will never progress into anything worse.

I felt the same way when I was diagnosed with DCIS in 2007 and was able to avoid not only a mastectomy, but also radiation. I am very happy that I didn't listen to the first surgeon, who wanted to do a mastectomy. If your sister-in-law feels strongly about this, it is her decision.

Please have her send me a private message if she wants to talk to someone who has been where she was and found a way to avoid a mastectomy. 

Best,Sandie

Yikes.  Let's all remember that all DCIS is not alike.  

Let's remember too that revere18's sister has had two opinions from two surgeons at two highly respected institutions.  The idea that we here, with virtually no information about the diagnosis, are suggesting that these two surgeons are wrong, is truly scary. 

Yes it's true that some DCIS can be removed with a simple lumpectomy and no addition treatment is required.  

Yes it's true that some DCIS can "treated" with watchful waiting with little risk for many years.  

But let's also remember that some DCIS is very risk high of evolving into invasive cancer within a short period of time. If not fully excised while the cancer is still DCIS, the result will be a much more serious diagnosis of invasive breast cancer - possibly very soon. 

And let's also remember that an initial diagnosis of DCIS from a needle biopsy sometimes turns out to be just the tip of the iceberg.  In 20% of cases, invasive cancer is found in the pathology following surgery, after a needle biopsy that showed only DCIS.  It doesn't take a lot of searching on this board to find women who started with needle biopsies of DCIS who subsequently, after surgery, were found to have highly aggressive invasive cancers and who have had to undergo treatments such as chemo and Herceptin.

Someone who has a tiny single focus of low grade DCIS has little risk in having surgery only and possibly has little risk with a watchful waiting approach.

But what revere18 is talking about with her sister is someone who has 3 separate areas of DCIS in her breast. We don't know any more about the diagnosis than that.  But with what we know about DCIS in general, we can guess that with multi-focal (and possibly multi-centric) DCIS, the odds are probably quite high that this is high grade DCIS that may be spread extensively throughout the breast.  If that's the case, we are talking about an aggressive, concerning diagnosis - something that is at the opposite end of the DCIS scale from the type of DCIS that can be watched or treated with a lumpectomy only.  What we are talking about is a diagnosis that's very similar to my diagnosis - and it turns out that my DCIS has already started to evolve to become invasive cancer.  I already had a microinvasion of IDC.

Like revere18's sister, I really wanted to avoid having a mastectomy. My needle biopsy in fact never even showed DCIS; my initial diagnosis was just ADH.  So I could easily have decided to forgo surgery. If I had gone with the "watchful waiting" approach, my invasive cancer would never have been discovered and I would certainly be sitting here today with a diagnosis of extensive invasive cancer.  

If I had decided to go with just a lumpectomy, as I would have preferred, I would have had positive margins - I know in hindsight (having had the mastectomy) that there was no way to excise all the DCIS in my breast with a lumpectomy.  With positive margins after lumpectomy surgery and with a highly aggressive case of DCIS that was on the verge of evolving to become invasive cancer, if I had left the positive margins I would likely be sitting here today with a diagnosis of extensive invasive cancer.

Revere18, before anyone can offer meaningful advice, we need to know more about your sister's diagnosis.  If she has 3 areas of DCIS that each are very tiny and that are low grade, then lumpectomy surgery might be feasible, if her breast is large enough to handle it.  If she refuses to have the mastectomy, then one of the surgeons might offer to attempt the lumpectomy, to see what happens.  One of the surgeons I consulted offered to do that for me, but he warned me that it was highly likely that we would end up with positive margins and then a mastectomy would still be needed.  In your sister's case, the odds are high that with 3 areas of DCIS it will be difficult if not impossible to remove all the DCIS with acceptable margins, with lumpectomy surgery.  But one of the surgeons might at least be willing to try.   

Looking forward to hearing more about your sister's diagnosis and how she is dealing now with this situation.  

Another thing worth remembering is that there MAY be something like a national fashion in treatment strategies. According to wiki:

"Mastectomy rates vary tremendously worldwide, as was documented by the 2004 'Intergroup Exemestane Study',[1] an analysis of surgical techniques used in an international trial of adjuvant treatment among 4,700 women with early breast cancer in 37 countries. The mastectomy rate was highest in central and eastern Europe at 77%. The USA had the second highest rate of mastectomy with 56%, western and northern Europe averaged 46%, southern Europe 42% and Australia and New Zealand 34%."



http://en.wikipedia.org/wiki/Mastectomy

Not Beesie but my head clearing advice is to to take a big deep breathe and don't rush yourself to a decision.  That is the "bright" side of having DCIS.  As my doctors told me, in the weeks that I spent testing, contemplating and making my decison, my DCIS was NOT going to kill me.  I was diagnoised on November 16, 2009 and didn't have surgery until February 2010.  In between I had all sorts of tests to sort out my situation and interviewed 2 breast surgeons, 2 plastic surgeons, 1 oncologist and a radiation oncologist.  By the time I had met with all those people, I felt I had a much better grasp of my situation and what needed to be done.

Original Poster--perhaps the problem is that your SIL needs time to wrap her brain around the whole thing.  I know after I was diagnosed I spent lots of time in the shower staring down at my chest trying to imagine what I would look like sans my left breast.  As for lumpectomy versus mastectomy. If it were me and I had three spots of DCIS, I would do as the surgeon recommended.  When I had a prospective srugeon saying mastectomy over my one spot, I went for another opinion and was told I was a candidate for a lumpectomy.

That said, one more thing your SIL should keep in mind--a multiple point lumpectomy can be more disfiguring than one expects so that one might need reconstructive surgery anyway just as with a mastectomy.  And because one tends to have radiation with a lumpectomy that further impacts the skin so that reconstruction might not be as successful as it would have been if one had a mastectomy.

An oncologist is a doc who deals with cancer, and oncologists come in various flavors.  Medical oncologist, surgical oncologist, radiological oncologist.  All that said, when an oncologist is referred to, they usually mean a medical oncologist.  Most people start w/ a surgeon (biopsies, excisions, etc.) and then deal with radiology/medical oncologists.  

Eventually, you're likely to see all three types, if only for consultations.  Ask your surgical oncologist when/if you'll be needing/seeing the other types.

HTH,

LisaAlissa 

VeganGal, I was treated at PHM as well.  

With an early stage diagnosis, until your surgery often the only doctor you see is the surgeon. If you are having a mastectomy with immediate reconstruction, you will also need to see a plastic surgeon. After surgery, you will probably be assigned a medical oncologist, who will talk to you about treatments like radiation (if you have a lumpectomy) and Tamoxifen. And if you have a lumpectomy, you will probably also be assigned a radiation oncologist.  The only reason you may want to see an oncologist before surgery is if you are struggling with the lumpectomy vs mastectomy vs bilateral mastectomy decision.  A key factor in this decision is future risk levels (under each scenario) and a medical oncologist is the doctor who can help you with that. So if you do have questions about your future risk level, then ask for an appointment with a medical oncologist now to help with this decision. 

As for advice on how to clear your head, what 3monstmama said is exactly right.  Take a deep breath.  And realize that you have time to make your decisions.  You can take the time you need to investigate and consider all your options, and get comfortable with whatever decision you make.

As for the decision itself and the choice between a lumpectomy and mastectomy,  here is a list of considerations that I put together a while ago for someone else 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 DCIS isn't near the chest wall, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some DCIS is found near the chest wall. Radiation might also be recommended if it turns out that you have a large area of invasive cancer in addition to the DCIS and/or if it turns out that you are node positive (which is only possible if you have invasive cancer).
• Do you want to avoid Tamoxifen? For those who are ER positive who have DCIS, this may be possible if you have a mastectomy and particularly if you have a bilateral mastectomy. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) it reduces the risk of the development of a new breast cancer in either breast; and 3) it reduces the risk of a distant recurrence. For most women, a mastectomy will reduce the first risk to a low enough level that the benefit from Tamox will be minimal. For most women, a bilateral mastectomy will reduce the second risk to a low enough level that the benefit from Tamox will be minimal. The third benefit, protection against a distant recurrence (i.e. mets), isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast. However for those who have invasive cancer, this is a crucial benefit and is not affected at all by the type of surgery. So if you have an invasive tumor that is ER+, usually Tamoxifen (or an AI) will be recommended whether you have a lumpectomy, mastectomy or a BMX. However if you have DCIS (and therefore face virtually no risk of mets) or a very small non-aggressive invasive tumor (and therefore face only a very small risk of mets), it may be possible to pass on Tamox with little change in your long-term prognosis.
• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer. How do you feel about going through a longer surgery and a longer, more restricted recovery period?
• If you have a mastectomy, do you plan to have reconstruction? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it. Are you prepared for this?
• How will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both. If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a mastectomy, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your DCIS can't be right up near the nipple). 
• How do you feel about losing the natural feeling in your breast and your nipple? Are your nipples important to you sexually? A mastectomy will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
• How will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you. Keep in mind as well that most women are pleased with their decision to have a mastectomy or bilateral when it's first done - they are relieved that the cancer is gone and the surgery is over and in most cases it wasn't nearly as bad as they feared. For women who are affected by the loss, the real impact usually doesn't hit until many months or even years later. That's why trying to think ahead to a time when this diagnosis is long behind you is important.
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be satisfied that you've reduced your risk sufficiently and not worry about it except when you have your 6 month 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. Be aware however that while a mastectomy will likely significantly reduce your local (in the breast area) recurrence risk, a recurrence or the development of a new BC is still possible after a mastectomy. Lots to consider. 
• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that DCIS cannot recur in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to him or her, 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?

Hope that helps!  And revere18, if your sister is still struggling with her decision, perhaps this discussion will be helpful to her too. 

Dr Melvin Silverstein is an "oncoplastic surgeon" in Newport Beach who I consulted with regarding lumpectomy with reconstruction as an option. Also Dr. Lagios offers a 2nd opinion on DCIS pathology -- an incredibly valuable service that offers great peace of mind. Please see my website/blog for their links and other insights/resources I have gathered over the last two years with DCIS:

www.dcis411.com   (click on "Resources")

PS: I have had 4 expert opinions and they all told me different things. There is no absolute truth with DCIS. Each case is totally unique and different and must be treated that way. Very important to follow one's intuition and keep investigating when something doesn't sound/feel right. Blessings to all. Donna 

Wow. I had no idea. I hope that you are OK!!!!!! I see that your DCIS diagnosis was in 2009 . . . so I assume that you are totally cancer free???? Oh my goodness . . . if one diagnosis wasn't enough. I can't image how that must have felt. You must have had to be so very brave . . . . . . Hugs Right Back at Ya Girl

3monstmama,

You are so right. My MRI showed "highly probable metastisis on sternum" "suspicious liver nodule" "lung nodules (3 of them)." My surgeon refused to go further with me saying I may be headed to chemo immediately. I had to take a bone scan and an CT scan (had 4 total of those), so I glow in the dark. But guess what, the sternum mets did not exist, liver was normal abnormality...lots of people have that. Lung nodules are stable, oncologist said probably from past bronchitis. What the MRI did pick up was the IDC later proven by a needle biopsy. 

It's all so massive and confusing. I look back on that mess and think "how did I get through that?" I guess step by step, one day at a time and of course this blog. It saved me and Beesie is  and always will be an angel.

Your sister-in-law was just hit with some emotional, devastating, heart wrenching diagnosis of cancer. If you have not had cancer, there is no way you can understand what is going through her mind. For some of us, mastectomy was an easy choice, for others, it just adds another horrifying and terrifying component to having cancer. For some, losing the breast(s) is very very difficult. So on top of just getting a cancer diagnosis, your sil is now hit with you should lose your breast(s). Her head is probably reeling right now. That is A LOT of life changing information to handle in a short period of time. 

If she decides that she only wants a lumpectomy for all three spots, then that is her decision. The thing is, she will need to get clean margins (an area that does not have cancerous cells surrounding the cancerous tissues). 

No one can predict what will happen if she has a lumpectomy vs. mastectomy, not even her doctor. BUT, there are certain things about DCIS such as grade, hormone postivity, size, etc that can guide the doctor. 

I don't know if you have had a cancer diagnosis, but until you do, it is very difficult to understand. We are all so different in how we handle things. You may think it is cut and dried, black and white, get the mastectomy. But obviously your sil is having a difficult time wrapping her head around it. This is an emotional time to have to make decisions like that.

Hopefully she has good doctors that can help her understand what can happen with each type of surgeries and a supportive family. But ultimately it is her decision as to what treatment road to take.

VeganGal, since you are being treated at the same hospital were I was treated, I assume that just like me, you will be having a breast MRI. This means that the only area of your body that will be examined will your breasts. So you don't need to worry about the MRI spotting lesions on your liver or anywhere else.  But it might find something funky in your other breast - that happens quite often and most of the time, it turns out to be benign (some run-of-the-mill fibrocystic condition) and just a false alarm.  MRIs are considered to be the most sensitive of the screening methods; it's because of the high number of false positives that it's not used as an initial screening tool. 

More extensive full body scans are usually only provided to those with more advanced invasive cancer and/or nodal involvement, as a means to check for mets.  With DCIS and very early stage invasive cancer, those types of body scans are not usually considered necessary.