Recently diagnosed with high-grade DCIS -- so many questions

voicewriter, I'm sorry that you've had to join us here.

I was in a similar position to you.  I had two areas of DCIS, both quite large, and after an excisional (surgical) biopsy, I had no clear margins.  My DCIS was high grade and a microinvasion had already been found.  My surgeon recommended a mastectomy, which I really didn't want.  I went for a 2nd opinion and again a mastectomy was recommended, although this surgeon (who did breast cancer surgery only; my first surgeon was a general surgeon) was willing to try a re-excision first, to see if we could get clear margins.  But before all that, he sent me for an MRI.  The MRI showed "stuff" throughout my breast.  My surgeon explained that until the breast tissue was under a microscope, there was no way to know if all this "stuff" was more DCIS, but both he and I guessed that it was.  So that sealed the deal for me.  I realized that a mastectomy was the only realistic choice.  And as it turned out, all that "stuff" was more DCIS.

So, based on my experience, and the experience of others who've been through this board, I'd suggest that if you have not already had an MRI, you should get one now.  I found it to be so helpful in making my decision.  If my MRI had been clear, I would have attempted the re-excision.  But because it wasn't, I knew that the odds of getting clear margins was very slim, so I accepted that I needed to have the mastectomy.  My 'good' breast was clear on the MRI so that helped me decide to have a single mastectomy only.

As for how much time you have, it is true that with DCIS you don't have to rush, especially since you've had the excisional biopsy and in all likelihood most of the DCIS has already been removed. Between getting a 2nd opinion, getting the MRI, having another biopsy (other breast - benign results), and consulting & coordinating with a plastic surgeon, for me it was 2 1/2 months between my excisional biopsy and my mastectomy.  Because I'd had the microinvasion, I had to have a sentinel node biopsy, and my nodes were clear.  Despite having had the microinvasion, no more invasive cancer was found.  So the time I took to make my decision didn't impact my results at all.

Although nobody wants an extra surgery, my suggestion whenever someone is unsure about whether to have lumpectomy or a mastectomy is that they should have the lumpectomy.  If the margins aren't clear (or wide enough to make you comfortable) or if you are really unhappy with the cosmetic result, or if you'd decided that you want to have the mastectomy after all, you can still have the mastectomy.  But if you have the mastectomy and it's discovered that there was virtually no more DCIS in your breast and you realize that a lumpectomy would have been your preferred option, there is no going back.  So if you are unsure, go with the decision that leaves your options open.  Similarly, with the SNB, if you have having a lumpectomy, an SNB can be done later, should any invasive cancer be found.  So not doing the SNB now doesn't shut the door to doing it later.  On the other hand, if you have a mastectomy, it is difficult to do an SNB after a mastectomy has been done, so given that you have a large amoung of high grade DCIS, usually an SNB is recommended for those who have mastectomies with that type of diagnosis.

Hope that helps!  And as for easing your anxiety, remember that DCIS is stage 0 breast cancer.  It is not invasive and it can't move into your nodes or your body.  No diagnosis of breast cancer is good but if it's going to happen, DCIS is what you want to hear.  And even if a microinvasion or a tiny amount of IDC is found, in most cases that won't change things much either.  I know, because I had the microinvasion and my treatment wasn't changed and my prognosis is barely changed.

Good luck!

I just here for support.  My diagnosis was very similar to yours.  I am having a skin sparing mx on my right breast next week with sentinal node biopsy (and please God, no more) and then immediate reconstruction on the right with future plans for implants in both.

I had opinions from several docs who said the MX was the way to go for ME.  Everyone here is correct in saying that its very personal based on your own diagnosis, anatomy and even how you feel about it emotionally. I had the genetics testing based on my family history and because they came back normal, I was comfortable telling my surgeon that she is only taking one breast.  Surgeon is the type that likes to be aggressive with cancer...but in this instance, she backs up my decision.

Do your research, read the boards and be ready to ask a lot of questions.  I grew up on Boston and KNOW youre in good hands up there.  I wish I was still living there, believe me!!!

 Sue

Personally, I would go for the lumpectomy first.  A mastectomy is a huge surgery and the healing process is much more than just physical.  I did have a lumpectomy first and then it was found I needed a mastectomy. I do take some comfort in knowing I did what I could to keep my breast. Even with the mast I still needed radiation because of margins.  So, be aware a mast does not always mean no radiation.  It is a horrible decision to have to make and I hope you are able to make one you are comfortable with.  I would have loved to have been able to keep my breast.  I really wasn't prepared emotionally for how hard it is to lose a part of your body.

You truly are in the worst of it.  It's hard when we are in the beginning of all this and very overwhelming.  This is a great place to come for help.  I would probably be  totally crazy without the women here!

This site is my haven.  I get more info, better info than anywhere else.  Beesie, I don't know if you are in the med field or not, but you are so articulate.  Thank you all for just being here.

That said...

I was also diagnosed at B/W in Boston with DCIS.  Had an MRI (which is SOP in NY, I found out).  The lumpectomy which Dr. Rei said would be a 50/50 shot for clear margins was very disappointing.  Sure enough.  I had dirty margins in 5 areas. 

The radiologist, who as luck would have it, also did the initial mammogram, checked back a few years and found I had a lot of calcs, scattered.  Most developed just within the past year.

SO what to do.  I did a lot of research.  Read everything on the top 3 web sites.  (This, in my opinion, being the best one.)  My breast surgeon thought that a second lumpectomy would only result in a 50/50 chance again.  And although my breast looks great after 8 weeks, a second lumpectomy would still be, I thought , just putting off the inevitable.  So I opted for a unilateral mastectomy.

 Then I need to decide upon recon, if any.  Again, after a lot of research and interviews with 2 plastic surgeons, I am going for a DIEP recon.  B/W does not do as many as BI so I have to wait until 2/11 for all 3 docs to operate as a team.  B/W seems a bit more conservative in their approach than BI.

Now the last decision is whether or not to do the SNB.  My gut tells me not to.  I am right handed and the whole idea behind doing the mastectomy rather than settling for another 1-2 lumpectomies, is to try to move pass this.  How can I do that with the threat of lymphedema hanging over me?

Pre-op is 1/25 and I have made another appt with the BC surgeon to discuss the SNB.  I know this is my only chance.  But lymphedema is hell.  It is a very expensive insurance policy.  I am not sure it is worth it. 

I would love some feedback about this choice.  Please be honest.  I do not want anyone to soften their opinions.  Not now.  Not about this. 

Wishing you all well.  And if anyone in the Boston area wants to meet for coffee or such, I am open.

Wishing you all well.

BJ

voicewriter = just my 2 cents.  I had DCIS - high grade - 2 areas in one breast only.  I decided on a BLMS almost 3 years ago and have never regretted the decision.  I don't think I could stand the added stress of having mammograms and waiting to hear if anything was found in the other breast.

Perhaps a second opinion from a DR. would be helpful.  I saw my "regular" primary care Dr. and told him of my decision.  He said "well you won't have to worry about going through this again"  Those words confirmed my decision and I still remember that day and how I felt when I thought about what the Dr said.

The BS never questioned my decision, I said would I preferred and he said fine.

The choice is very personal, but I am very happy with mine.

BJB1 - I am right handed, had 3 nodes out and no problems at all.  It is the first place the cancer spreads, so it does give you great piece of mind knowing the nodes were free of cancer.  The SNB is easier as far a side affects than removing other lymph nodes.

Good luck to you both

Voicewriter sorry that you are going through this, but to gather all this information is the best tool for your mind.......

My 2 cents worth.....I had a large area of calcification's which were 9cm's and I was already concerned the area was too large, but I did not want a mastectomy.  Did not get clear margins after the 1st surgery and had to go back in and they took out another 9 cm's which has left me completely lopsided and my husband is okay with it, yet there are some days I am not.....my nipple is pulled to the left as that is where all the cancer was.  Yes I have one good thing on my side as I do have my natural cleavage and no-one would know what I have gone through as I wear something to balance me out.  But I had to change the style of bras I wear so you cannot see my enhancement....It seems so little to most people but there are days that I have been so rushed and have forgotten to put it in and was completely embarrassed.  I wanted to do Reconstruction but after 2 surgeries and radiation I was kinda feeling like I was all done......I am now second guessing that decision.....I cannot have a tummy tuck as they feel that with mine being grade 3 I could possibly get more later on and want to save that in case I have to have a mastectomy.  Also cannot do implants as I barely have enough tissue left to cover the implant.  They want to do a Latisimus Dorsi Flap which involves stretching the muscle from your back to rebuild the breast.......I guess what I am trying to say is that no matter how much research one does, there can always be complications or situations that change our minds.......it is the hardest thing to do is to decide what one would do.  I sometimes wish I had the mastectomy even though I know how some people are so unhappy with their results.....I just had one long year like many on this board and I still have not had a clean report since undergoing this whole darn thing.......

I am in Shrewsbury not too far from Boston and would love for you to join our Boston area group as we have a large group of women who have met and had lunch......

voicewriter, count me as another one who had been in a similar situation (large area of DCIS, dirty margins after they took a 9cm-long chunk in a lumpectomy). My surgeon urged me to do a mastectomy, but psychologically I just couldn't do it.

So, I did a reexcision, got clean (but very narrow) margins (less than 1mm at one margins), but decided that was good enough for me. Unfortunately, DCIS can skip in the duct, and I had two more tiny areas of DCIS left that had been missed.

After my reexcision, I really had no choice but to do a mastectomy. I dreaded it... hated that I would have to do it... dragged my feet kicking and screaming.

In the end, I'm SO GLAD I did it. The DCIS that was still in my breast was high-grade, not low- to-medium-grade like all my other DCIS had been, and that's the most likely grade to turn invasive. This time, we got fantastic margins -- the closest margin was 1.3cm. Unlike after my first two surgeries, this time I have confidence that the DCIS is out.

Previously, I would read about women preferring to get a mastectomy, and I would think, "I would never make that drastic of a decision out of fear." Well... there are some cases where it's not a decision out of fear... it's a decision based on carefully-weighed facts, a thoughtful analysis of your own personal risk (e.g. the Van Nuys Prognostic Index that swalters mentioned), and going with what is most logical and prudent based on those factors.

Two big reasons I dragged my feet about mastectomy (in spite of my personal facts screaming loud and clear that I needed it) were 1) I didn't want to lose sensation (the big dirty secret many surgeons don't tell you ahead of time), and 2) I wasn't happy with any of the reconstruction options (and hated the idea of losing my nipple).

New reconstruction options are now available that solve both those problems. For instance, I did a nipple-and-skin-sparing mastectomy. Many women do that and find it's psychologically easier to wake up with their own nipple intact. (Of course, reconstructed nipples look just as good if not better than the real thing, as many women here can attest!)

Also, there are new techniques that don't require an implant or other foreign object and don't require invasive additional surgeries. One of them is called micro-fat grafting with the Brava system. It uses your own body fat to recreate an entire breast, without any foreign objects, any additional incisions (just small injection sites), The drawback is that it's so new, not many plastic surgeons are doing it yet (or even know about it). But, it's something that can be done at a later date, even years afterward -- and I believe that within a couple of years, this will be done by a lot more surgeons. June2268, it sounds like fat grafting might be an option for you, whether now or later (yes, it would be another procedure, but MUCH less invasive and stressful than the one you've already had).

Personally, I would go for the lumpectomy first.  A mastectomy is a huge surgery and the healing process is much more than just physical.  I did have a lumpectomy first and then it was found I needed a mastectomy. I do take some comfort in knowing I did what I could to keep my breast.

This is exactly my feeling too, and that's what I did... and even though it meant yet another surgery since I had to have the mastectomy anyway, I have absolutely no regrets. Yes, I sometimes wish I'd followed my surgeon's strong recommendation to go ahead and do the mastectomy instead of a reexcision, but then I would have always wondered if I had taken too drastic a step. Now, I know for 100% certain I did the right thing with the mastectomy.

I think a second opinion from another Dr. would be most helpful.  As you can see there is disagreement from those on the board.

I had tremendous piece of mind having the BLMX.

My sister had a lumpectomy last month, now she has to start radiation

Lots to ponder for you - Good luck

voicewriter- don't know if this makes you fell any better but I too had high grade with necrosis.  It literally went from nipple to chest wall....no invasive cancer.  I also had a SNB because of the size but  all was clear.  Many many women have high grade DCIS with necrosis and no IDC.  Hope this helps.

I had a small area of Grade 3 DCIS, comedo cells with necrosis, and have done very well with the lumpectomy. My breasts were pretty small when I was diagnosed, very small B cup.  Almost six years later, no regrets, still very happy with the appearance of my breast, and I have a very good quality of life.  I am not a worrier about recurrence,  I have tried to adhere to the followup plan my onc and surgeon mapped out when I was done with treatment.  There are absolutely no guarantees with lumpectomy or mastectomy, and I just try to live the best life I can everyday.  We are all different in regards to our cancers, and it is such an individual, personal decision.  Educate yourself, get second opinions, and make the best choice you can for you.

While I am so very sorry that you are having to deal with this diagnosis, please believe me when I say that you will find that your sisters in the fight are one of the best gifts you will ever receive in this life.  I have several who have become the family I choose for myself, and can't imagine not having them in my life.  Prayers and positive thoughts coming your way.

barry, if you decide to have the lumpectomy, would you have radiation?  I should have been clearer in my previous post that for those with invasive cancer, survival rates are the same between mastectomy and lumpectomy + radiation.  I'd mentioned radiation in conjunction with the choice of a lumpectomy earlier in my post but I should have been more clear about this in the subsequent paragraph.  

Most of the information available on lumpectomies assumes that a lumpectomy goes hand-in-hand with radiation, at least as the starting point.  In other words, for those who have lumpectomies, it's assumed that they will have radiation and therefore the decision is not whether radiation is needed but whether it's possible to adjust the standard protocol and forgo radiation. Of course there are a percentage of cases where it's possible to forgo radiation with little risk but these cases are the exception.   

I don't know any of the details about your diagnosis so I don't know how this might apply to you, but I thought that it was important that I clarify my earlier post.  When you do you see your breast surgeon to discuss this?

BJ, no I'm not in the medical field.  Just a patient, like everyone else. I do have a research background so I'm comfortable digging through the research studies (I actually enjoy it!) and I've had breast problems since I was a teenager (I had my first biopsy at the age of 16) so I've had a lot of experience in this area and a lot of chance to read up and learn.   With regard to your question about an SNB, I certainly understand your concerns.  I knew I had a microinvasion before my mastectomy surgery was done so I had no choice but to have the SNB.  I've had no problems but I am always conscious of how I use my right hand and arm, and frankly, that's a pain in the butt sometimes.  On the other hand, if my microinvasion had not been found earlier, I would not have been happy if I'd had a mastectomy without an SNB and then found out that I needed to have a axillary node dissection done. It's not an easy choice. I think if I was in your shoes, I would make my decision based on the pathological makeup of the DCIS that's been removed to-date.  If it's mostly grade 3 and/or has necrosis, then I think I would go with the SNB. If it's all grade 1 or 2, then I think I would pass on the SNB.  I think.   

voicewriter, have you had any further discussions with your doctors and/or firmed up your decision for the Feb. 25th surgery? 

voicewriter, sorry I meant to write "Jan. 25th".  Good luck with the MRI tomorrow!  I hope that it comes out nice and clear, suggesting the presence of little more DCIS, or better yet, no more DCIS.

barry, I understand your surgeon's recommendation.  You've already had a diagnosis of DCIS in your other breast, and then a recurrence of that cancer, and now have been diagnosed with IDC. You can't take radiation or most BC drugs. Given all that, your surgeon's recommendation of a BLMX seems to be the most prudent, in terms of reducing as much as possible your risk of another recurrence of either cancer, or the development of a new cancer in either breast. I'm certainly not one who jumps to the idea of a mastectomy or a bilateral right away (I explored all the options before I admitted to myself that a mastectomy really was my only reasonable choice) but in the situation in which you find yourself, honestly, I'd go with a bilateral. For me, not being able to have radiation or take Tamoxifen would be the clincher.  With those treatments and a small low grade tumor, I'd probably opt for a lumpectomy.  I appreciate your feeling that this is a drastic measure for a small cancer but remember that your surgeon's recommendation is being made not just on this diagnosis, but on your situation as a whole.  As for the SNB, with any amount of invasive cancer it's possible that the nodes can be affected and therefore they need to be checked.  Even those of us who have just a microinvasion - 1mm of IDC - have about a 10% risk of nodal involvement.  I'm so sorry that you are forced to make this decision.  At least with a small low grade cancer, you have a bit of time to decide what's right for you.  Have you talked to an oncologist?  An oncologist might be able to help you assess your risks under each possible treatment scenario and that could help you with your decision.

erica31/daisy6, do you have links with the research to support your comment?  I'd really be interested to see the study that you are referring to.  The most recent research that I recall seeing (I don't have time to dig it up right now) actually shows a higher long term survival rate for those who have lumpectomies + radiation vs. those who have mastectomies. In any case, a 1 - 2 point difference in survival rate, for either option, is unlikely to be statistically significant, or in other words, a differece that small is almost certain to be random. So I'd love to see the research to get the details.