Share your experience.

Suzannecarol

I have just been diagnosed with DCIS. (Focal ductal carcinoma in-stiu, cribriform configuration, nuclear grade 1.) Have no idea what all that means. I am trying to make the decision of lumpectomy or mastectomy. I did not know many lumpectomies have to be done again later. Can you all share your experience here and your decision between lumpectomy or mastectomy and why? I know it is my own decision but it helps me to hear your journey. When I left the surgeons office he had suggested a lumpectomy but I had no idea of anything else. He explained how it was done but I did not realize some people have to have them redone, sometimes the margins are not clear and I guess you have to go back in and have another surgery. There is so much I do not know.

proudtospin

I am almost 7 years out from my DCIS adventure. Yeap, needed 3 tries to get all the little pesky little buggers and to have clear margins.  Did rads and finished up the 5 years on aromasin last year.

All clear.  Note, a lumpie is a simple surgery, I went to a quilt show the afternoon after my first one although, my pal with me was a docs wife~~

A mastectomy is a much bigger surgery it seems to me.  No one recommended mastectomy to me at all.  It is true if I had a reoccurance, a mastectomy would be the solution but hey, 7 years is good to me!

ballet12

Hi Suzanne, if you have a small amount of focal DCIS, the odds are in your favor that they can get it all in one lumpectomy, but yes; there have been those on these threads who have had to have a re-excision even in that situation.  I needed two re-excisions, but when I had the first lumpectomy, it was really an excisional biopsy, in that the core biopsy had shown atypical ductal hyperplasia (a pre-cancerous condition).  They weren't even really going for clean margins in that situation.  It turned out that I had DCIS, and lots of it, so it required two more surgeries, although I also switched to a second surgeon, which added a bit of complication to the process.  I had a large amount taken out in the first surgery (4 cm) and there were no clean margins at all.  The second time, there was one bad margin, and the third re-excision was the charm.  Given that I had so much taken out in the first procedure, some did advise mastectomy, but my surgeon was game to try for the second and ultimately the third surgery, knowing that I might have what they call a cosmetic defect.  Each person's situation is different.  Even each DCIS diagnosis is different.  It's a very personal decision.  I was glad to be able to do the three lumpectomies rather than a mastectomy.  Even though the breast isn't so pretty anymore, it's still there. I also asked for wide margins on the third attempt, although now I hear that that's not really necessary (narrow but clean is now considered OK).

proudtospin

actually, my BS did all three lumpies  and left only one scar line.  Even the mamo folks are amazed by my scar

get thee to a really good surgeon

Cindielm

Hi SuzanneCarol!! My story is much like yours. I had DCIS, stage 0, grade 2. I'm still learning what it all means, but I do no my cancer was DCIS (the "good" cancer). The grade is what bothers me a little as Grade 1 means it's not aggressive, and Grade 2 means it kind of is. I actually have Grade 2/3. When I started all this I was really terrified, my first thought was a mastectomy. My BS thought that was way to drastic, but he also said that after all the tests & surgery it might end of that way. I had my first surgery and he took two pieces---first one the initial DCIS. and the second because it was to close to the margin. The second piece revealed 2 additional cells. I decided on another lumpectomy, but I did always keep the mastectomy in the mind. Second surgery revealed yet another cell, but he said it was next to the skin so there wasn't anything left for a third surgery. He said if there are any little stinker cells left the radiation would take care it. (The mastectomy was sounding even better for me by this time!!!!) He then went on to say again, that he thought a mastectomy was drastic and that if I were his wife or mom he would want me to do rads & meds. I decided I would do that, but I do have to admit if I ever (hopefully not) have to go down this road again my decision maybe different. It truly is a personal decision and luckily for most with DCIS there are many choices----(sometimes having so many can cause anxiety too as I wanted to make sure it was the right choice for me.)

Sorry this is so long. After both surgeries I guess I was very lucky as I had no pain at all---just a little sore. After my second surgery on June 30th (I live in Wash DC area) my husband and I walked across the bridge to the Lincoln Memorial to watch fireworks on July 4th and then walked all the way back to the Pentagon!!!! I wore a sports bra and made it rather tight, but it was so nice to think about something other than BC.

Even with the two surgeries I have a very small scar that even I can barely see. The only difference is because of the weeks of radiation one breast is now smaller than the other. Don't care. You will be fine, and try to remember that there are a whole bunch of us on this website that don't know who you are or what you look like, but are there with you now in our hearts, thoughts and prayers!!!!! Stay with us together!!!!

Dx DCIS, Stage 0, Grade 2, ER+/PR Surgery 06/02/2014 Lump Surgery 06/30/2014 Lump Radiation Therapy 08/13/14 External Meds Arimidex 10/14 - 5 yrs

Annette47

I had a lumpectomy and didn’t need to go back for wider margins. It was just the single surgery. Because we knew I had a micro-invasion from the biopsy, they also did a sentinel node biopsy at the same time, but if you only have pure DCIS that can be avoided with a lumpectomy. They will do it with a mastectomy though (because unlike with a lumpectomy you can’t go back later if something else turns up on final pathology). Having any nodes removed at all does increase your risk of lymphedema, which although a small risk is a life-long condition so it’s something to think about. In addition to the surgery, I also did radiation which is usually standard practice if you have a lumpectomy. I had minimal side effects and no regrets. In terms of my appearance, I have a faded scar, a small divot which is only visible from certain angles and not at all in clothes, and I personally had no “shrinkage” from the radiation - in fact I had swelling which took almost 2 years to go away. It wasn’t bad, but did make the treated side a little bigger than the other side for a while. Oh, and the pigment on my nipple/areola on that side faded dramatically, but I don’t mind, LOL.

I chose a lumpectomy because I had a very small area of cancer and a mastectomy seemed like overkill to me. Plus, sensation is important to me, and with a reconstructed breast (or a missing one!), you have very little if any sensation. For some women it’s not a problem, but I would have seen it as a major loss. If at any point I have a recurrence or new primary in that breast, I will then have to proceed to a mastectomy, but in the meantime, I am happy with my choice.

tiff2talk

I had a lumpectomy, but the margins were not clear and decided to have a mastectomy. The general rule is with a lumpectomy it is much less invasive than a mastectomy, but you would need to make sure your margins are clear (they got all the cancer surrounded by your good tissues). But with a lumpectomy, you will also need radiation.

Most mastectomy, do not require you to have radiation because there are no more breast tissue left to radiate.

However, a lumpectomy and mastectomy does not guarantee that you will not need additional surgery. Unfortunately, there is no guarantee in breast cancer. Bless you and hope this information helps you.

CaliRN

Suzzanecarol-

I was diagnosed with DCIS in September of 2014 at 43 years old. I had surgery in December and opted for a bilateral nipple sparing mastectomy with immediate reconstruction due to a very strong family history of breast cancer. I also wanted to avoid radiation and tamoxifen if possible. It has been a long process and the tissue expanders have been the worst part. I will have my exchange surgery in early April. It hasn't been easy but I am happy with my decision so far. Good luck!

LAstar

I was diagnosed in 2012 at 42 years old after finally getting around to my first over-40 mammogram. My first lumpectomy had 4 of 6 margins involved. An MRI indicated that the DCIS was more widespread than the mammogram indicated. A second lumpectomy resulted in 3 or 4 involved margins, including one area that had been "clear" in the first lumpectomy. Apparently, DCIS is not always consistently distributed throughout the ducts and there was more DCIS behind a clear margin.

Because the MRI had also indicated some suspicious areas in the other breast, I opted to have a BMX with immediate hip flap reconstruction. The pathology report verified that the suspicious areas were false positives. Extensive necrosis (basically a failed flap according to my BS) on the cancer side required a second reconstruction, this time DIEP. Apparently, hips have smaller vessels than are found in the abdomen, so necrosis and flap failure are more common with hip flap reconstruction than with DIEP. The recent pathology from my cancer side indicated that no DCIS was found -- such a relief!

I am just past the 3-year diagnosis mark and hoping that I can finally move ahead from all of this. It is concerning how there is no monitoring for me now since I have done all I can. My oncologist said to do manual exams and let him know if my bones start hurting. My task now is to live in a way that reduces my recurrence risk, which includes not worrying about breast cancer unnecessarily.

MaggieHenry

Hi all,

I was just diagnosed with DCIS, Stage 0, Grade 3.  I'm meeting with the BS on Monday who has advised a Lumpectomy and Radiation, and the Radiation Oncologist tomorrow.  With everything happening so fast and me still researching exactly what DCIS is and what the grades mean, etc., I'm quite confused... to say the least.  I'm leaning towards not having the surgery since it appears that DCIS never leaves the breast duct, although it can.   Any thoughts on not having surgery.  Am I just nervous or have I not educated myself enough? 

Thanks

LAstar

Maggie, check out this helpful page on this site: http://www.breastcancer.org/symptoms/types/dcis/di... (grade 3 definition below). Having a lumpectomy is very straightforward and a quick recovery. The night of my second lumpectomy, I was cleaning the kitchen one-handed. The published studies on radiation indicate that it will further decrease your recurrence risk by half. There are a lot of confusing articles out on DCIS that talk about overtreatment, but many of these do not consider the grade. Grade 3 is a different issue than Grade 1. If I'd had Grade 1, I might have taken the watch-and-wait approach. For Grade 3, my BS said it's not "if", it's "when" and I didn't want to wait too long and then need chemo as well. It is completely overwhelming at first to be diagnosed with something most of us have never ever heard of and some folks say isn't cancer! Take some time to read and find the treatment that gives you peace of mind to move ahead. This site is a great resource! Best wishes to you!

Grade III (high-grade) DCIS

In the high-grade pattern, DCIS cells tend to grow more quickly and look much different from normal, healthy breast cells. People with high-grade DCIS have a higher risk of invasive cancer, either when the DCIS is diagnosed or at some point in the future. They also have an increased risk of the cancer coming back earlier — within the first 5 years rather than after 5 years.

High-grade DCIS is sometimes described as "comedo" or "comedo necrosis." Comedo refers to areas of dead (necrotic) cancer cells, which build up inside the tumor. When cancer cells grow quickly, some cells don't get enough nourishment. These starved cells can die off, leaving areas of necrosis.

proudtospin

my DCIS was considered hi grad but so far, it is over 6 years, I am doing good

MaggieHenry

Thank you LAstar.  I will definitely check this out.

I'm thinking I may be focusing too much on the stage and not the grade.  That is where I really seem to struggle.

MaggieHenry

Proudtospin -
did you have surgery?

Suzannecarol

Thank you all for your experiences. This has been one of the toughest decisions I have ever made. I think it was because I did not like any of my choices and I guess I was trying to find a way out. It took a few weeks to understand that. I have decided to do the lumpectomy March 18 mostly because I can go do the mastectomy next if the lumpectomy does not turn out well. May I ask some more questions? Those of you that had a lumpectomy do they discover your margins are not clear after they remove the cancer? Do you know if you have pure DCIS from the biopsy or do you have to wait until the lumpectomy to find out? Do they get all the cancer with the majorities of lumpectomies? Did most of you tolerate the radiation and the chemo oral drug well? Sorry so many questions

proudtospin

yes, I had 3 lumpies followed by rads and then the lovely Aromasin

Suzannecarol

one more question, does my diagnosis grade 1 possible change after the lumpectomy? I guess I wonder why they even tell you your stage and grade if it changes after the lumpectomy?

LAstar

Yes, they can't see the DCIS so they have to do their best based on imaging and then rely on the amount of removed tissue that is clear on the edges (the margins) to determine if they got it all. The biopsy gives you an idea, but the pathology from the lumpectomy is more thorough. My diagnosis didn't really change after the Lx. They found high grade in the biopsy but then intermediate- and high-grade DCIS in the Lx. I don't have a sense for how many folks only need one Lx. You can't really tell from reading these boards because the people that need only one Lx often skip into the sunset and the folks that need further treatment stick around. I didn't have radiation because I had mastectomy, and I don't know anything about a chemo oral drug. Are you thinking of a hormone blocker/aromatase inhibitor?

Suzannecarol

Yes, hormone blocker. I don't know where I heard chemo but yes that is what I am talking about.

CaliRN

My core biopsy showed intermediate grade (grade 2) with some possible invasive cancer cells. After the mastectomy they found grade 3 DCIS and no invasive cells. Your diagnosis can definately change after the lumpectomy or mastectomy.

Annette47

My cancer (Grade 2 DCIS but with comedo necrosis and a micro-invasion) was entirely removed by the stereotactic biopsy. The lumpectomy found nothing additional, so everyone is different.

I did have radiation and chose to take Tamoxifen. The radiation was strongly recommended, but the Tamoxifen was left up to me, but I felt the biggest benefit would be the prevention of a new primary, so I chose to try it. So far the side effects haven’t been bad enough for me to want to quit.

momzr

My DCIS 'story'  - I had my diagnosis of DCIS back in 2008 -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy. I have not had any additional treatment besides my excisional biopsy in July '08 which got that tiny area of DCIS out.  At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.

I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS.  In summer of 2011 microcalc’s were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions.  In July 2012 a small grouping of microcalc’s (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign.  They put a ‘marker’ in at the time of stereo biopsy and I have had follow up mamm’s since then which thankfully continue to be ‘stable’ in that area.  I am at the point now, almost seven years since first lumpectomy/surgical excision of being back to annual checks.  So, while I don’t feel I am ever 'out of the woods' from the initial DCIS diagnosis and have had to endure additional (thankfully benign) biopsies, so far so good even though I chose not to have radiation. That’s my story at this point.

Suzannecarol

Thank you for sharing. I think I am in a similar situation as you. Keep in mind I am very new to this and some of the terminology is foreign to me. I had several calcifications. She showed them to me on the mammogram screen after the mammogram. Several tiny dots looked to be the size of green peas. My question is and if this does not sound familiar to anyone I will call the doctor but I was dumbfounded as I sat there in his office and did not think of this question until I got home. He said as he held my biopsy report in front of him, this said your report showed focal ductal carcinoma in-situ, cririform configuration, nuclear grade 1. Maximum area of involvement 0.3 cm. He then said i found another same size so I removed both being a total of 6 cm. Does anyone know what all this means and why he did not mention the other small calcifications. Of course I am wondering what happened to the others?

lovestorun

Suzanne - please don't beat yourself up for not thinking of a question during an appointment. It is a lot to take in and process when you are the patient.

 FWIW, I found it helpful to write my questions down in a notebook when I thought of them, and then I had a list to refer to at appointments.  I'm pretty sure I asked some more than once, because I'd forgotten the answer in the haze of an appt.  Don't be afraid to ask a question, or ask it again.  Or even again.

proudtospin

yeap, I take my little list to MO appts, doc is used to it and sure I am not the only one

Suzannecarol

I think part of my problem is I don't know what to ask sometimes. Just like him saying he removed 2 when I thought I had more. That didn't occur to me until I got home. I will use the tablet idea. I like it because I hate to get out my phone with my list. My sister went through throat cancer with her husband. She had post it notes one time in her hand, The doctor took them out of her hand and read them one by one. She said Oh dear I did not expect anyone to read those but me. The spelling is terrible. He said I bet I can figure it out. Sounds like a good doc.

leeisdcis

I just had my second surgery because the margins were not clear after the first. Unlike some on this site, I had pain and still do. On my first surgery, I also had lymphnodes tested which was very painful and my arm is still numb (2 weeks ago). I decided on lumpectomy because of a few reasons. I didnt want radical surgery if it was not necessary. I was tested for the BRCA gene and was negative thank goodness. I was tested because my mom had BC about the same age as me (51). On my second surgery they removed some skin and muscle. I havent started radiation but that is next. I thing I have learned is everyone is different. One person is fine the same day or the next, and others take a week or more. Wishing you the best on whatever decision you make. It is your decision.

JMBR

I was diagnosed on January 2 of this year (DCIS, nuclear grade 1, cribform pattern and calcifications). I'm fairly young (43), so I went through a full battery of genetic tests (BRCA 1 and 2 as well as about 20 others) before making my decision whether to have a lumpectomy or mastectomy. In the meantime I visited a plastic surgeon my breast surgeon recommended so I would know my options and be prepared if I decided a mastectomy and reconstruction was the path I ended up taking. All of the genetics came back negative, so I chose to have a lumpectomy on January 28 and got clear margins. Tomorrow is my last radiation treatment! Surgery was a piece of cake for me, I never needed a single pain pill, and I was back to work within two days. Radiation has not been as easy, but it has not been horrible. I've had extreme fatigue and a good amount of blistering, tenderness and swelling. I found a lot of comfort and support in reading others stories and gathering as much information as I could, but as everyone will tell you - every person's experience is different. God bless you and know you are not alone.

proudtospin

congrats JMBR for getting through your treatment.  Suggestion, I did much like you and worked through all with minimal time off for surgery.  Thing is I never gave myself time to rest and ended up with shingles about 6 months after ending the rads!  Give yourself time to nap!
oh yeah, proud to say that I am almost 7 years clear!

AnewBeginning

Hi Suzanne

My experience with DCIS was not as good as most. I was dx in 2011 with DCIS stage 0 and had lumpectomy with RFA. Margins were clear but after pathology of lumpectomy they found a tiny microinvasion. In Dec 2014 I had a recurrence and dx with HER2+ with 4 lymph nodes. I dont know if I would have had mastectomy if that would have prevented the cancer from recurring. Cant go back but I wish I knew then what I know now. Good luck to you!

have2laugh

leeisdcis-

  Every is definitely different. Like you, I had lymph nodes testing first surgery per surgeons advice since two of my sisters had IDC at same age. I found that area was very sensitive. Like you, my second surgery was a bit more involved due to first surgery patho results we decided to go big and if not clear move on to mastectomy. So I definitely wasn't up and about the next day. Watch yourself because when you have large amounts of breast tissue removed it can also disrupt lymph flow as can any removal, manipulation to lymph nodes. I am over a year out and starting back to PT for truncal lymph edema. It can be hard to differentiate edema that is post op, radiation related, etc so my advice would be follow up with physical therapy if this persists. I wonder if I would still have issues had I been seen regularly a bit earlier but it is manageable and per surgeon and RO you can still see improvements in first 1-2 years after surgery so still may resolve. Take care of yourself and good luck with radiation.