DCIS to invasive statistics?

Nancyinct · May 2013

Hi Beesie. I have been reading your posts and today I finally set up my account to contribute, vent, purge, encourage and whatever else happens to come out. I have DCIS that is 9cm x 2. I have had 4 biopsies and 5 MRI's since April. I am scheduled for surgery on June 5th. I have opted to go with the least invasive treatment approach. I will have a partial mx on the righ, a breast reduction on the left, no lymph nodes taken during surgery then 6 weeks of radiation. However, if the margins aren't clear or they find an invasive cancer within the DCIS then it's back for a mastectomy, and/or nodes and chemo. I am hoping for the best, but I can't help worrying that something else will go wrong. That seems to be the way it's been going. At first, they thought my DCIS was 4cm and as it turns out it is 9cm. Every MRI/Biopsy I had, they told me a bigger number. I know that other people have been or are currently facing a similar dx. I will post my progress and results as they become available to share with my new found friends. Thank you for reading this rambling message.

Nancy

deb1973 · May 2013

Hi Nancy,

I hope Beesie weighs in - she is kindness and good sense personified.

In the meantime, it is great that you are going with an approach that sounds well thought out & that you are comfortable with.

I know there aren't too many ladies on the board with such large areas of DCIS, but we are out there. I just had surgery and the final tally on my DCIS was ten centimeters. No one found invasion (knock wood) & I had my slides reviewed by MD Anderson after the initial pathology. So take a deep breath & know you are going to be okay.

Take care,

Deb

p.s. I (like you & Julz) am ER/PR negative.

julz4 · May 2013

Hi Nancy, my Sister in law had 7 cm of DCIS removed almost 6 years ago. She had very large breasts & had a similar surgery like you are going to have. A parcel MX & a reduction. She has been ccancer free in her breast for those 6 years now. She was ER & PR positive. My DCIS was only 2.8 cm but I am also ER & PR negative like you. I know of one other lady from these boards that was the same as you her Tumor was 6 -7 cm & also ER & PR negative like us. She has been cancer free for about 8 years now. I know your fear of waiting for the final surgery pathology report. Especially with our negative hormone status! More so with the size of your tumor. I will say we are a rarer group to have just DCIS & be hormone negative. I will be thinking of you & sending positive thoughts for a good pathology report with no changes! Please keep in touch let us know when your surgery is & how things are going!!!! Julee

Nancyinct · May 2013

Hi Deb and Julee. Thank you for your posts. I am feeling much much better about my treatment decision after reading your posts. Even if it ends up not working, I know that this is the right decision for me. Please keep us all posted on your progress as I will do also. I can see how we can learn many things from each other and truly help one another simply by sharing our bc story and journey.

My surgery is scheduled for June 5th. I'm sure I will be reaching out to you more often as the time draws closer. I have a great supportive husband and family but it doesn't take the fear or anxiety away. I see a Reiki therapist also and he will be doing his thing during my surgery. I'm bringing everyone's kind thoughts and prayers with me to the OR and setting myself up for the most success that I can. Thank you for your unique and wonderful friendship!

Nancyinct · May 2013

Hi Deb,

If you don't mind me asking, when was your surgery? And did you opt for partial mx or full mx?

Nancy

CTMOM1234 · May 2013

Nancyinct's question reminded me how the term "partial mastectomy" isn't straightforward. I was scared when the admitting nurse for my lumpectomy, who was just trying to make me comfortable before surgery, said I was having a "partial mastectomy" because I heard the word mastectomy and then another staff member consulted my surgeon who clarified that I was indeed having a lumpectomy. Hope this helps, here's the two-level definition (http://www.healthsearches.org/Categories_of_Q&A/Treatment/1159.php):

What is a partial mastectomy?

The term, partial mastectomy, usually refers to a lumpectomy, in which only the tumor and a small sample of the surrounding breast tissue are removed surgically, but the breast is left otherwise intact. In many lumpectomies, some of the lymph nodes under the arm also are removed.

Occasionally the term, partial mastectomy, is used to describe a segmental mastectomy, in which the tumor, surrounding tissue, lining over chest muscles, and often certain lymph nodes under the arm are removed.

If your surgical oncologist uses the term, partial mastectomy, ask the doctor for clarification regarding the definition of the term (i.e., the nature of the surgical procedure recommended).

deb1973 · May 2013

Hi Nancy,

I sent you a private message w/ more details, but just want you to know I am sending you good thoughts.

Although I had BMX, you know what is best for you. My approach was very much influenced by the conversations I had with my doctors who suspected after my first surgery that there was a lot of residual DCIS. I also had very small breasts & they didn't think I could get clear margins otherwise. Their advice was spot on.

But each person is different. Don't be afraid to ask lots of questions of your doctors or gather second opinions, whatever it takes to feel at peace with your decision.

Hugs,

Deb

Nancyinct · May 2013

Thank you Deb and CTMOM! Your input is greatly appreciated. I guess I am unclear as to what they are doing (lumpectomy/partial mx) on the 5th. I am meeting with my plastice surgeon next Tuesday, so I'll have a better understanding of what's going to happen then. All I know now is that they are going to remove the DCIS along with a margin of good tissue. I said "no" to them taking lymph nodes at this juncture. I am a small woman only 5'2, size 4-6 also a 34DD+ which is the only reason I could avoid a full mx if I wanted to. And I'll have a reduction on the other side to have a symmetrical appearance.

Deb- you made the wonderful suggestion of focusing on some type of reward after the surgery, and I have to say that having smaller breasts will be my reward. They are quite heaving and cumbersome to someone my size. And....I'll lose weight without even dieting LOL

Thank you, my friends! Have a wonderful day.

Nancy

Beesie · May 2013

Nancy, I had two areas of high grade DCIS in a small breast. After an excisional biopsy removed about 3cm of DCIS and I didn't have any clear margins around either of the areas of DCIS, I was sent for an MRI. The MRI showed that my breast was full of "stuff". My surgeon guessed that it was all DCIS but of course we didn't know that for sure until we had the pathology report. It turned out that he was right. My left breast, despite having benign calcs (I'd just had a biopsy for those) and despite a number of previous biopsies, came back clear on the MRI. So I had a single mastectomy.

My breasts were small 34Bs. If my breast had been larger, and if the MRI hadn't shown so much "stuff", I would have tried for a re-excision. So I completely understand why you are hoping that the lesser surgical option is successful - if I'd thought that there was any chance of success in my case, I'd have done the same. The other advantage for you is that in having the lumpectomy (as CTMOM said, in most cases a partial mastectomy really is just another term for a lumpectomy), you can avoid the need to remove any nodes. I had a microinvasion of IDC that was found during my excisional biopsy, so no matter what surgery I had, I needed to have my nodes checked. But if not for that microinvasion, I too would have happily passed on the SNB if I'd been able to have a re-excision rather than the MX.

All that to say that I completely understand the approach you are taking. The way I look at it, if your surgeon says that a particular approach is viable and can be done, then it's a valid choice. So if the lumpectomy and no node removal is how you want to handle this, that's great and that's what you should do. If it doesn't work out and you end up with dirty margins, then you will have to deal with that. But hopefully you end up with nice wide margins and everything goes well. Good luck with the surgery!

Nancyinct · May 2013

Hi Beesie! Thank you for your input. I have been worrying a bit about my decision. What you have outlined are all the reasons I have decided on this approach. I am feeling good again about this most difficult decision. My bs is completely on board and supportive. I'm going to see my plastic surgeon again today. Surgery scheduled for June 5. I have a lot of support from my family and friends, but I have to say that your support and the support of the other women on this site is so precious to me.

Thank you again, Beesie!

(((hugs)))

Nancy

Paige18 · June 2013

I am so thankful for this website and all of you. I am very very new to breast cancer. I had a stereoscopic core biopsy/clip placement on April 2013 and they took 8 samples. It showed ADH/Borderline DCIS/Nuclear Grade 1/Cribriform type. My second opinion from the pathologists report leaned more toward low grade DCIS given the more rigid cribriform growth in a few ducts. I just had a needle localization/partial mastectomy to remove any residual and or new microcalcifications last week. The results from partial mastectomy showed nothing no ADH or DCIS and my CLIP WAS NEVER RETREIVED because they believed it DEVIATED. I am soooo confused. They said i dogged the bullet for radiation and chemo this time and that the core biopsy must have removed it all. I am trying so hard to stay positive. I am 45 years old with two beautiful little kids. I wanted a complete mastectomy in the beggining of all this but they advised against it saying how would you feel if we removed you breast and we found no cancer. On the other hand i just got a partial mastectomy or lumpectomy every doctor uses different terms and i lefts with these thoughts in my head. Was the original pathologists report from core biopsy correct, DID I REALLY EVER HAVE DCIS? (should i get a couple more oppions?) and since my CLIP DEVIATED what are the chances that the partial mastectomy missed some the the CONCERNING AREA? I meet with the Surgent and Medical Oncologist this week and maybe i can get some answers. Does anyone else feel confused and fustrated and worried if you are making the correct choices?

lane4 · June 2013

Paige18 - You should press your surgeon for an explanation of why the clip was not in your lumpectomy specimen. Hopefully, the wire localization led the surgeon to the correct spot regardless.

I will add that the radiologist's report for my wire localization states that a clip had "migrated" (I had two clips), but he was confident that the wire was placed correctly. I had a large area removed (10 x 4 x 2 cm. plus 6 additional margins) that included additional dcis, but the margins were clean.

Maybe you could ask for a post-surgery MRI or mammo as soon as you can handle the compression to really find out if the correct area was removed. I understand how you would feel confused and frustrated. You don't have all the information you need yet. Wishing you well.

ballet12 · June 2013

Hi Paige,

I also had a clip that migrated after my stereotactic biopsy last year. They were able to locate the area of concern for the lumpectomy based on the location of the calcifications that were still present. Also, besides placing a clip, they also do note the precise location of the biopsy, so, in your case, they probably went on those coordinates. I had multifocal DCIS show up on the initial lumpectomy (with no clean margins), so I was assured that they found it.

I just had another stereotactic biopsy today on the other breast, for a small area. I can totally understand your worries.

I guess the question isn't why did the clip migrate, but how can they be sure that they went back to the correct area. Apparently clip migration is common.

Paige18 · June 2013

Iane4 and Ballet12

Thank you for your reply. I hope all is well with both of you as we know it is a very long journey. Did either you have to go on Tamoxifen? I had the Sterotactic Core Biopsy performed by one Surgeon. The experience was so traumatic and i felt violated therefore that I could not see her again. She did not explain the procedure at all to my husband or i nor did she mention the clip placement in my nipple. I was therefore blindsided. Also I developed a hemotma from the Sterotactic Core Biopsy behind my nipple I proceed to Fletcher Allen for a second option. They did another mammogram to see if there was residual or ANY OTHER area of microcalcifications . I never got a clear answer if they were residual (left over) from Core biopsy only that i had a area of 7mm of calc with 1 cm in-between with 7 mm of clac to be removed during lumpectomy because i was so nervous as to the amount of tissue they were taking (I am barely a A cup). This is why I am so concerned if they operated in the correct area since my clip migrated. I thought i only had one area of microcalfication to begin with before the stero core biopsy. I meet with the Surgent and oncologist on Thursday i hope i get some answers. Please stay in contact and keep me posted as you both progress.

ballet12 · June 2013

Hi Paige, it's good that you are meeting with your MD's. Your situation seems very confusing to me. In addition, when they find these very small areas of pathology, the entire treatment plan also gets very confusing and conflicted.

I had a large amount of multifocal DCIS, so the treatment plan unfolded in a predictable manner, until I got to the hormonal therapy question. I am still deciding about the Tamoxifen or Aromatase Inhibitor (the preferred choice of the oncologist.)

I am waiting to hear about the stereotactic biopsy of the other breast done today. If that's benign, I'll be back to my quandry about the hormonals. If it's ADH, my surgeon said I should consider taking Tamox for prevention in the second breast. Like your situation, it's a small area this time.

lane4 · June 2013

Hi, Paige - Please let your surgeon know that you are concerned about whether the correct tissue was removed and do keep pressing for answers. I certainly understand why you are confused and concerned.

As for tamoxifen, it was highly recommended for me, but I declined. The reason I chose not to take it is because I had atrial fibrillation which in itself adds a stroke risk. But now, 3 1/2 years later, the a-fib is under good control and my cardiologist thinks tamoxifen would not be very risky for me. So I am reconsidering. I figure I could at least give it a try.

Keep us posted on what you find out. ((Hugs))

Merlcat · June 2013

I can't imagine taking tamoxifen. In my mid 20s, I had a massive, medically unexplained hemmoragic stroke that has left me with deficits on my left side. Neurologist said that if I was older(50s) it probably would have killed me. I'm more scared of having another stroke and it affecting my right side, which would leave me unable to do with either side than I am of cancer returning. My DCIS was both ER and pr +

Paige18 · June 2013

Ballet 12 and Iane14

Thank you so much for understanding. Not sure what I would do without both of you. Lots of Hugs!!!!!!! i I am sooooo sorry if it sounded confusing. Iane14 please let me know if and when your trying out Tamoxifen? I am thinking of you. Ballet12 please let me know how you are doing with result of the core biopsy from your other breast. I will keep you in my prayers. Also please let me know what your decision regarding Tamoxifen is. I have been struggling with all the research I have done on it because I believe Thursday they are going to suggest that I take it.

On April 12 Stero Core Biopsy and clip placement was performed at Hospital A. Pathologist report showed Two Foci of ADH/(((((((BORDERLINE)))))))) LOW GRADE DCIS, NUCLEAR GRADE 1, CRIBIFORM TYPE. I will never return to Hospital A because the surgeon failed to explain the Stero Core Biopsy to my husband and I. I have never felt so traumatized and violated in my life.

On April 29 I proceeded to Fletcher Allen for my second opinion on my Core Biopsy that was performed at Hospital A. Their pathologist report showed he favored this a LOW GRADE DCIS GIVEN THE MORE RIGID CRIBRIFORM GROWTH IN A FEW DUCTS. They also gave me a mammogram of the left breast that day because additional views were recommended to evaluate RESIDUAL microcalcifications.

Left Breast Additional Views Findings: There is a postbiopsy clip at 12 O'CLOCK POSITION in the subareolar region. A 2 cm oval density is noted,LIKELY a hematom from Stero Core Biopsy performed on April 12. There is at least one cluster of Calcifications spannig 4 to 5 mm at the 3 O'CLOCK POSITION, located posterior to the hematoma at a middle depth. A few scattered additional calcifications are seen without other definite cluster, given decrease sensitivity given breast density."There is a cluster of Calcifications, suspicious for additional disease". Additional would recommend needle localization excision of the non biopsied calcifications at the time of surgery if these are concerning for malignancy.

On May 22 I had a needle localization with partial mastectomy. Seven days later they called with my pathologists results. It showed NO ADH/ NO DCIS/NO CLIP. They also informed me that my clip must have deviated.

I am so nervious and confussed. I hope they operated at the right spot where the core biopsy was done. What are the chances that the partial massectomy missed some of the concerning area from the core biopsy? If my Pathologist report from Core Biopsy BORDERLINE DCIS was INCORECT Why would i want to take Tamaxifen for 5 years? Who I will follow up with both of you after this week after Thursdays appointment.

DCIS to invasive statistics?

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