Dcis....fact

[Jean]

As most know DCIS is considered a pre-cancer.
I believe that some may even feel that since it is not invasive
that it may not pose a serious threat.......well...please know.

That once you have had DCIS you are at a higher risk for the cancer coming back or for developing a new breast cancer than a person who has never had breast cancer. About 25% to 50% of DCIS cases back
as invaive cancer. DCIS itselft is NOT invasive.

Regards,
Jean

[Melissa]

Okay now I have a question.
I was not dcis but was idc. But a friend recently was dignosed with dcis and I'm a bit worried about her decisions. Here goes...
First of all she had a lumpectomy, not getting clean margins. Can this allow the cells to spread inbetween surgeries? Because when they put dye in the tumor site to find the s node the dye spreads quickly. Also she said her surgeon did not remove the s node, does this make sense? She is her2 +++ from her biopsy report so I think she should have herceptin. Also dcis may not be invasive at the time but I've read where some have come back metastatic, is this correct. Because that would make it capable of becoming invasive. Then why not give at least herceptin?

[Melissa]

Jean, if you don't mind me asking... How is that you're a grade lll when you are her 2 +++? I thought her2's were grade lll or at least grade ll. Also I wish I would have had my topo ll jean tested. Maybe I wldn't of had to have the AC.

[Jean]

Melissa,
Of course I don't mind your asking, that's why we are all here.
My tumor was graded 1 because it was well differentiated
but the character of the tumor was aggressive as my
KI-67 level was high. I am not certain that it is written in stone
that all Her2 + have to be grade 2 or 3. My Her2 +++ was
tested by both tests and twice by FISH and my FISH score was 15.

There is great reading on DCIS on our board - type in DCIS high recurrence in the search bar,
and also read the links posted by Lani. Good question on herceptin
when Her2 comes into the play. Just like early stagers at what point do you treat? Was a big question down in SA, the dr. are all divided.
Dr. Slamon believes all Her2 + should be treated with herceptin.
The standards are changing as we type. DCIS is not studied enough and there are studies currently going on but we do not have the data.

Yes, DCIS can come back and be invasive. There are different types of DCIS just like breast cancer. Most dr. treat it as a pre-cancer.
The links I mentioned will offer more detail.
Hope this helps.

As far as your friend, I will give you my case as a reference.
At first I was dx. with Stage 0 DCIS - my surgeon was still doing
a SNB..when he went in to do the lumpectomy the DCIS dx changed as the DCIS was
invasive..so now I was IDCIS...stage 1 - and note my tumor was very
tiny...3MM - There is so much debate over treatment. It becomes important for the patient to be hands on read the pathology report
and know what the margins were. Most often these days SNB is being done. Just curious of the size of her tumor, did she have radiation?

Kind Regards,
Jean

[Sheila]

Melissa
There are several on this board that went from DCIS to Stage IV in a short period of time, Chrisy is one, so was Nicola...they are looking at DCIS and the invasive component differently than they did a few years ago.

[Becky]

Since I am a DCIS guru, 8% of unradiated DCIS can return. Half recurs as DCIS and half recurs as invasive cancer. Radiation reduces recurrance rate by approximately 50% (bringing the recurrance rate down to about 4% - although literature says this number is actually a 98% cure rate - oh well looking at studies versus stats). The type that recurs the most is the high grade (hence why low/intermediate grade with wide clear margins and good prognostic factors (ER/PR+ and Her2 neg that are small are not often radiated).

DCIS is now considered cancer as the cells are cancer - it is just cancer that has not moved from the duct (and may never do so). Right now, however, science has not determined what will invade and what will not invade.

[Melissa]

Thanks for all the information. I will refer my friend to the board and various links. As for her tumor, it was.5 cm. I'm also going to push for her to have the SNB since the they have to go back in to get clean margins. I just hope I'm not too pushy. She is planning to have radiation.

[Bill]

Hi everyone. Sheila, thanks for bringing up that fact about Nicola going from dcis, stage 0 to stage IV. Sometimes, I hesitate to bring it up for fear of frightening someone, but it does happen. A routine mammogram, which she did religiously, showed microcalcifications, which were removed by a stereotactic lumpectomy, and then 18? radiation treatments to the site. No problems for 18 months or so, then gall-bladder pain, and when the onc. surgeon we requested went in to remove the gall-bladder, he found breast cancer in her liver. He said he'd only seen that happen one other time in his career. None of her scans ever showed any evidence of cancer in her breasts, just the mets to her liver, and then her brain. We wondered if a mastectomy, or chemo, or herceptin would have made a difference when she had the dcis, but when you're told it's stage 0, and you caught it early, you just breathe a sigh of relief and count your blessings, but still, it's becoming more apparent that "simple" dcis needs to be taken more seriously. In a different post I read earlier, someone inquired if a lumpectomy, I think she was asking, could introduce cancer cells into the bloodstream, and Nicola and I often wondered if that's what happened in her case, but who knows? If we go down that road and begin to fear every invasive procedure as possibly spreading cancer cells throughout the body, that's no way to think either. I know our case was unusual, just wanted to chime in. Wishing you all the best. Love, Bill

[Jean]

Bill,
You are so correct...it takes careful study of the pathology report on DCIS to be certain. Also how many dr. are treating DCIS that is HER2 ?
times are changing but certainly not fast enough. I would now advise
any women with DCIS to have her path report checked again.

Kind Regards,
Jean

[Jean]

Melissa,
I know your very concerned about your friend and her DCIS and the surgeon getting all of the DCIS with clean margins and invasive
DCIS. After her surgery and radiation she could always have a
BSGI - Breast Specific Gamma Imaging with the Dilon test.
The George Washington University Medical Center has one. Assuming your friend is in your state. If not just check the site
for other areas that have the machine.

George Washington University Medical Center
Washington, DC
Rachel Brem, M.D.
Director, Breast Imaging and Intervention
202.741.3031
rbrem@mfa.gwu.edu

http://www.dilon.com/sitemap.php


I am also attaching a link to the site for your review.
This test cost $500.00 and is much cheaper that MRI you also get
the result right away. It is not painful like a mammogram and is a comfortable test unlike the MRI...you sit in a chair and the machine is rolled over to you and the breast are placed on a shelf much like a mammo
only without the compression. It takes 5 min. on each side.
and the usual is two photos on each side. Very easy.

I think all women after healing with surgery/radiation should have an
MRI or Dilon to insure that nothing is left behind or they did not miss
another site.

Your friend is fortunate that you are looking out for her.
Wishing both of you all the best !
Please let us know how she is.

Kindest Regards,
Jean

[murph]

Ladies,
I had mammo's since i was mid 30's, I knew there were calcifications. What i did not know was to keep a eye on them. When i found my lump at 38 yrs old, had a mammo and ultrasound. Mammo didnt pick it up, the ultrasound did. Final path of my breast was 4 seperate invasive ductal carcinomas, along with at least 4 dcis directly to each of the four lesions,compatible with separate primary tumors. Also in the breast between the tumors, some dcis was present also. The dcis was cribiform, and comedo type.

[Bev]

Hi Melissa,

Yes I'm a little confused. I thought while you were knocked out, if they didn't get clean margins, they go back in and do a resection during the initial surgery. So their path report should say A) tumor: Blah Blah, B) Node 1 : Blah, C) Node 2: Blah and D)
Resection : Blah, Blah, not in this order. Mine described how far they went from each edge of the tumor based on the style of stitch by the surgeon, color coded and all that.

I would really be suprised if one had nuclear dye inserted and not have S! and S2 studied. So your friend could clear up the path with the surgeon or others. Herceptin does not seem to be a radical choice to me, if you are Her 2 +.

I have not seen the correlation of grade, as opposed to stage studies for HER 2 +, but would guess most HER 2 is high grade.

Best wishes, Bev

[Becky]

My mother had to go back to the OR a week after her lumpectomy for clean margins (and she got them the second time around). No self respecting surgeon or radiation oncologist will go for dirty margins. I think the only way MIGHT be if a tumor is very close to the chest wall - then I really don't know what they do (unless the radiation protocol is different).

Another way to get cancer from DCIS is that there are truly precancerous changes in the rest of the duct. A woman gets a lumpectomy but 18 months or whatever time goes by and the duct gets a new cancer (probably one very similar to the first as it is the same duct) and that one becomes invasive. Otherwise, the dcis she had the first time had the smallest amount of mircoinvasion that wasn't picked up the first time. If that happened and one of those cells traveled before radiation (if a lumpectomy is done) or masectomy, then mets could happen later.

Remember, most dcis is curable with surgery alone although that is not recommended in many cases with lumpectomy alone. However, I am a dcis alone person who had lumpectomy only and all is well. However, in my case, because I had a Stage 2 cancer in the other breast, I received chemo, herceptin and arimidex - and besides that mine was only 3mm, low grade, and only ER/PR+, this may all help my no rads on that dcis cause.

There are many ongoing studies on dcis all to include - rads for all dcis no matter what to looking closer to decide on rads (if clean wide margins and lumpectomy are employed). Just like bc, they are learning molecularly every day so that women are treated with the right ammo but not over treated.

[Melissa]

Bev,
It happeded the same way Becky described about her mother. Five days after the first surgery the surgeon informed her that he didn't get clean margins. So she's having the second surgery come this Monay. Hopefully all will go well!