2nd wide escision did not get clear margins!

tacichon

I am devasted! My diagnosis is DCIS in situ right breast 10:00 o'clock. intermediate grade, non invasive, the first excision, the dr. got only 1 clear margin, she had to go back in and try and get clear margins on the other 3 sides and did not, I do not have the pathologist report yet, I will see the Dr on Monday to discuss options, I am at the place where they could be "chasing the DCIS" and she did tell me a mastectomy is an option. I just can't bear the thought of that right now..

 Opinions and support,Please!

Terri

Bedford Texas 

J9W

oh Terri, I can understand your feelings. It's bad enough getting the DCIS news but then to go back and back again for excisions. I couldn't even go there when my time came, I went straight for the mastectomy because I wanted to make sure it a was all gone!!! At once, too. Now, almost two years later I am wondering if I shouldn't have done a double mastectomy? This is such a stressful time now for you and trying to come up with answers is anything but easy. I'm sorry for you that you have this upon you.  Hugs,  Janine

tacichon

 I am devastated! There has to be another option besides Mastectomy! DCIS is non invasive.

What are other options than mastectomy?

eileenr56

I would wait and talk to the doctor.  I had one recision.  There are alot of people on this site that get Mastectomies and are very happy with their choice.  I personally, wouldn't wnat to do that until I had no choice.  It is a very personal decision.  You need to do what is good for you.  The doctor may suggest going in one more time to get better margins.  I wonder how many people in this group had to go in more than once.

the other question I have is, did you have an MRI.

Is it time to get a second opinion or a different surgeon.  Of course if you trust your surgeon that is great.

Don't worry yet. At the end of the day, DCIS is Stage 0.

dancetrancer

I don't know about other options tacichon, but I just want to say I completely understand where you are coming from regarding being devastated.  I just found out I have 3 other suspicious areas and if one of them turns out to be DCIS my only real option is mastectomy.  This is b/c of my small breast size and how much tissue they'd have to take out would leave me with a "significant defect" otherwise.  I can only imagine how you feel with having had multiple procedures and now looking at more surgery.  <hugs>

SarahMeadow

Hi Terri,

so sorry you have to go through this. I had a lumpectomy, then partial mastectomy, then bilateral mastectomy (for LCIS and invasive lobular BC), so I know the dismay and anxiety that comes from facing increasingly tough treatment after initially being told that its a small lesion, nothing much to be concerned about.

One thing I would discuss with your doc on Monday is radiation treatment (if it hasn't come up yet). Women with DCIS who have a lumpectomy tend to have better outcomes if they also have radiation treatment. This is a middle course to take instead of going straight to mastectomy. See the following studies:

The influence of margin width and volume of disease near margin on benefit of radiation therapy for women with DCIS treated with breast-conserving therapy

Long-Term Outcomes of Invasive Ipsilateral Breast Tumor Recurrences After Lumpectomy in NSABP B-17 and B-24 Randomized Clinical Trials for DCIS

Comparative effectiveness of ductal carcinoma in situ management and the roles of margins and surgeons

Hope this helps a bit as you work through your choices.

Wishing you all the best,

Sarah 

Mantra

I would suggest you looked for posts by Beesie or try and contract her through PM. If anyone can answer your question, she can.

tacichon

Mantra what is PM? to contact Beesie?

Hugs,

Terri

Mantra

First, do a search to find a post by her. When the post comes up, her name will appear on the left side. Click on the name and it will bring up her profile. On the right hand side of that profile the first option is to send a private message.

tacichon

Thank you Eileen, I hope I have better options, when I speak to the Dr on Monday,

Will keep you posted..

Hugs,

Terri

tacichon

Thank you Sara, My DCIS is non-invasive, no comedonecrosis, macropapillary.. Lowest kind of DCIS, except for intermediate grade. the is why I am so stonewalled, baffled etc about not clear margins, I am beginning not to trust the pathologist..

I will keep you posted on what the Dr says on Monday.

Blessings and Hugs,

Terri

Bedford Texas

redsox

I would urge you to try to suspend worrying until you see the doctor and hear recommendations, but a couple of things to consider.

DCIS does not always show up on any particular type of imaging or visually during surgery.  The surgeon has to try to get all of the DCIS and clear margins based on the evidence available and experience.  They are also trying to avoid taking an unnecessarily large piece of the breast.  Needing a re-excision is not unusual.   

DCIS can spread out in the ducts and may become widespread.  A relatively good pathology of the DCIS may be widespread, while a more aggressive DCIS might turn into invasive cancer faster without spreading out.

One step at a time and deep breaths.  How about an escape/distraction over the weekend?

tacichon

Thank you Redsox!

I am just devastated I thought for sure she was going to get it all this time so I could move on to radiation.. never occurred she would not get it all this time.. She kept telling me I would be fine and she could get it..

It has been very stressful,, hopefully I am going to catch up on some much needed sleep this weekend..

Hugs and blessings I will keep you posted

Terri 

SJW1

Terri,

When I had a lumpectomy for DCIS in 2007, my local pathologists told me 4 out of 6 of my margins were not good. I was devastated as I did not want a mastectomy for a non-invasive cancer.

I consulted with Dr. Michael Lagios, a DCIS expert and pathologist who has a consulting service that anyone can use. He reviewed my pathology and disagreed with the local pathologists and said they did get all the DCIS. Since then, the research I have seen shows pathologists disagree about 25 percent of the time. 

Although your situation might not be the same as mine, you might want to consider a 2nd pathology opinion from an expert like Dr. Lagios. I was not only able to avoid a mastectomy, but once he calculated my recurrence risk at only 4 percent without radiation, I also decided not to have that either.

Since DCIS is non-invasive you have time to explore your options and figure out what is right for you.

Feel free to send me a PM (private message) if there is anything I can help you with.

Hugs and good health,

Sandie

mixin

I had ILC in one breast and DCIS in the other. I was told both were very small and my surgeon assured me he could get clear margins. Unfortunately, he did not get clear margins on the first try and had to do both sides again. Apparently, both cancers were deeper than all the tests showed.

The second time, he got good margins on the lobular but the ductal was too close to the chest wall to get wide margins all the way around. The surgeon said he wasn't overly concerned about the ductal because it was in situ.

 So, I had radiation on both sides and have been on Arimidex for just about a year now. Both follow-up mammograms have come back clear.

I think I remember some women here have had as many as 3 excisions before they got clear margins.

Good luck with whatever you decide.  

tacichon

Thank you Mixin!! I love this site and everyone's support! My DCIS is located at 10:00 oclock right breast. I will keep fighting!!!!!!!!!!  

Hugs,

Terri

Bedford Texas

MamaMia41

Hi Terri,

I was in a similar situation to yours very recently.  I had a lumpectomy and 2 re-excisions because of one close margin.  Once I found out the 1st re-excision wasn't successful I wanted to have a BMX because I was just sick of the whole thing.  My surgeon strongly recommended against that.  My close margin was the inferior one (going straight down) and she said that because it was not travelling outward toward the nipple (in which case she would recommend MX) she was sure she could clear the margin with a 2nd re-excision and did not want me to lose my entire breast.  She told me that she only saw a case like mine every 3-4 years.  I thought about it for a long time before deciding, it was 2 months between the 2nd and 3rd surgeries.  My last surgery was successful, she got 5mm of clear tissue.

One positive thing about DCIS is that you have the ability to take your time to make decisions.  Get a second opinion if you feel you need it, you denfinitely want to make an informed decision.  Please feel free to send me a private message if you'd like to talk more.  Good luck!

tacichon

Lauren, thank you so much!!

I am definitely thinking of 2nd opinion and a 2nd pathologist report.. I see the Dr on Monday to discuss the results of the 2nd excision. My bestie friend is going with me as I have no family, here and am single. My girlfriend is extremely knowlegdgable of cancer as he has seen her husband through 2 rounds of stage 2/3 rectal cancer and a heart transplant. I do know one thing I don't beleive in a mastectomy for stage 0, no comedonecrosois  and no nodes or glands involved.

All surgeons what to "cut" that is what they are trained to do.. I will beleive I have other options!!

Many blessings and hugs,

Terri

Bedford Texas 

jadeblue

Hi Terri. So sorry you are feeling frustrated and devastated. As others have pointed out, treating residual DCIS is not an emergency so you have time to gather all the opinions you need to feel comfortable with your choices. I chose a BMX after one failed lumpectomy, but I didn't have straight DCIS: I had a very early stage one cancer that was ER-/PR-. Also, because I'm petite, there was not much left for them to cut out. So, I have two questions for you: 1) How much breast tissue do you have available for re-excision? (Unfortunately, size does matter in this case) and 2) Are you ER/PR positive or negative? (You might make different treatment choices if you aren't a candidate for Tamoxifen to help prevent a recurrence.)

Finally, just a word of encouragement: I hope that a successful re-excision is in your future, since it's so clearly what you want, but I just want to say that, should the worst happen, there is life after mastectomy. I remember when I first found out I might need one, I cried and cried. I looked at the photos, read about it, and cried some more. I couldn't imagine having to walk this road. Now that I'm going through it, it's honestly not so bad. I sometimes mourn the loss and miss the sensation, but then my new breasts are perky and cute; my husband likes them and they turn heads like the old ones never did. Best of all, I didn't have to do radiation and I have more peace-of-mind knowing that this is less likely to return.

Good luck with your treatment. Let us know how it works out for you. -Jade

P.S. If you do ultimately need a mastectomy, this board has a private picture forum where women share their reconstruction photos and stories. Send a private message to timtam if you want to access the forum. I promise you, nothing else will help you feel more OK about mastectomy than "meeting" many great women with gorgeous results!

proudtospin

Hi, I had 2 lumpies for my DCIS, surgeon said start rads. Rad onco pulled another mamo and said whoops, found more DCIS.  Went back to the surgeon (I told her take a hunk and get this over!) I asked all 3 docs at that point, should I do a mastectomy?  No one suggested that.  Note I am a DDD size so plenty left~

Got clear margins on the 3rd lumpie, did the rads, now on aromsin and celebrated my 3 years clear!

But if uncertain, I agree on taking time to get another opinion from your team

StaceyLynn

Can someone explain "clear margins" please. I've asked my dr to explain, but I can't recall what she said. Thanks

proudtospin

basically my understanding surgeon has an area removed that has no dcis cells, they are scattered and not a solid area

hope that is correct

redsox

StaceyLynn--

The surgeon removes a piece of breast tissue with the known/suspected area of cancer in it.  The pathologist looks at the edges (margins) of the specimen and measures how far from the edge the nearest cancer cells are.  They want to see margins clear of cancer cells all the way around the specimen.  If cancer cells go all the way up to the edge (positive margins), most likely cancer cells are also still in the breast adjacent to where that tissue came out.  Cancer cells can skip some space so they want to see at least a certain clear margin. <1 mm is not adequate, but the acceptable cutoff between 1 and 10 mm is controversial and may depend on the characteristics of the particular case.   

The important points are that:

inadequate margins increase the chance that there is still cancer in the breast

DCIS does not appear visually to the surgeon or always show up in imaging so the surgeon cannot just decide to get a certain desired margin width

StaceyLynn

Thanks redsox. I remember after my lumpectomy the BS told me i had clear margins. Then after my BMX and the removal of an 8mm tumor, I was told the same and that the tumor was about 1 cm from my chest wall. Everything is now so fuzzy after chemo.

StaceyLynn

{{Terri}}....

tacichon

Thank you all for your responses!! I am so glad I am on this site. I have stage 0, no comedonecrosis, ,EPR/Pr no , Her-2 no, Ki-67 no, max size 4cm.  That is why I am questioning a mastectomy of my right breast.. I am non -invasive. has anyone else had a 2nd pathologist opinion?

Hugs and blessings

Terri

Bedford Texas

bevin

HI there, I am sorry you're going through this.  I will share I too had to have a second incision for clear margins . My BS (who is at a major top 50 cancer center - so I trust what they said) stated that approx 35% of surgery for BC have to have a re-section.  I understand it is even more common when like you, somone has DCIS as the doctors cannot see the cancer that is within the duct. So they are operating blindly. Where as, with invasive cancer, they can see and feel the tumor.

I hope this helps relieve your anxiety a bit.  I know its scary. Please call your BS if you are concerned . I agree with one of the ladies above. Beesie has a great post on DCIS, I think if you search for it, it will pop up. She posted it in its own thread.

Good luck to you.

Bevin

tacichon

Bevin, thank you so much, I did read Beesie post, That is why I think I have other  options than a Mastectomy! Tomorrow my appointment is at 4:30 CST and I have allot of questions lined up. I am anxious to see the pathologist report from my 2nd excision. One member here emailed me and gave me allot of good information.

 I  will keep everyone posted.

Hugs and many blessings!

Terri

bevin

That is Great Terri- and dont feel bad about getting other opinions.  I had 3. The doctors work for you and any good doctor would welcome a second opinion.

I hope everything goes well!