Intermediate to High Grade DCIS--very aggressive?

maize

Hi Ladies:

This article has me worried.

"Moreover, of the 89 women diagnosed with "high grade" DCIS -- the ones most likely to develop into cancer -- 98 percent were found by MRI, compared with 52 percent found by mammography. In addition, 48 percent were missed by mammography but found by MRI alone."

"High-grade DCIS almost always becomes invasive and does so after a short time, Kuhl explained. "When it becomes invasive, it is biologically aggressive -- that means it kills," she said."

http://www.aboutcancer.com/breast_mri_lancet.htm

If the DCIS found is intermediate to high grade with focal necrosis, does that mean it's very aggressive and will invade quickly? Is focal necrosis the same thing as comedo-necrosis? Does it matter if the cells are estrogen and/or progesterone receptor positive or not regarding how aggressive it is?

I was told that my intermediate to high grade DCIS with focal necrosis--cribiform type--was not life-threatening and that it could not invade the bloodstream or lymph nodes. (It was removed surgically).  I don't know now if the DCIS was somewhere between less aggressive and aggressive or it is the rapidly invading kind.

Ami1026

Hi Maize - Let's focus on this paragraph from the same article:

"If you identify breast cancer at this stage and remove it, the patient is healed -- always," she said. "Avoiding invasive breast cancer is even better than early diagnosis."

The article was identifying reasons why we should use MRI more in screening, because there are (according to the author) types of DCIS that are more aggressive than others and may turn into invasive. But yours was removed before that had a chance to happen! It doesn't matter what grade it was, it's gone. Healed, by the author's own words. :-)

maize

Thanks, Ami1026.

I keep wondering why the doctors seem to be in a bit of a hurry for me to get radiation and  hormonal treatment, yet one of them said it can't invade through the bloodstream or lymph nodes, anyway.  One doctor said DCIS is cancer, period, and the other said it's called a pre-cancer. There was some mention of the possibility that there can be micro cancer cells hiding out in some women that aren't detected, and that scared me--but they did do a sentinel node biopsy (3 nodes) and didn't find any evidence of very small cancer cells hiding out, laying in wait, fooling the immune system into thinking they are normal cells.

cailindearg

I had an MRI after my needle biopsy showed borderline dcis, the MRI showed nothing to be concerned about, it was only after I had the lumpectomy that dcis grade 3 was discovered with no clear margins.

I'm now scheduled for a BMX Jul 3rd with SNB.

Ami1026

Maize - did you have lumpectomy? Maybe that's why, they just want to be extra sure there's nothing hiding in the rest of the tissue.  I sometimes think I should feel even safer now than before dx, because my body was going to do this anyway and I got it out and it's gone. (But then sometimes i spend hours looking on Dr. Google for things to be worried about.) It's pretty normal to worry more now, and that's what sucks about BC.  But those of us with DCIS know for sure there's nothing in our lymph nodes and as far as the scientists know nothing else floating around because we've been through the surgery.  I guess ignorance is bliss and reality bites, but if my DCIS was going to turn into IDC someday then I'll take my current reality over that anytime.

cailindearg - sorry to hear about the unclear margins. Good luck with the bmx/snb, hoping for clear nodes for you. Truly after all this, if you get those clear margins/clear nodes it will be such a relief. Let us know how you're doing.

Ami

SJW1

Maize,

Have you asked for a 2nd pathology opinion? With pathologists disagreeing up to 20 percent of the time, I think it is always a good idea.

When I was diagnosed with DCIS in 2007, I got a 2nd pathology opinion from Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use. At the time, I thought I would need a mastectomy, but because he disagreed with my local patholgoists, I ended up needing only a lumpectomy and no radiation or tamoxifen. 

Please also check out my post to you in the thread on omitting radiation that you started last week for more info on this.

Also PM me anytime, if you have questions.

Best,

Sandie

cailindearg

Thanks Ami !

maize

Thanks to all of you for responding.

I did get a lumpectomy.  There are some women who have had mastectomies and reconstruction who are happy with their decision.

Sandie,

I read your blog.  I think it's fantastic that Dr. Lagios examined the tissue and changed the treatment regimen.  I wish I'd felt I had time to learn more.  I had surgery not quite three weeks after initial diagnosis.   I didn't know if it could spread very quickly or not.  After reading that some types of cancer double every 23 days, I was freaked out. 

 My fear of hormonal treatment is because of the risk of endometrial cancer and uterine sarcoma and having to have the uterus removed and possibly having metastases from cancer of the uterus, blood clots and stroke, pulmonary embolism.  It seems there are no available treatments that don't have some potentially very serious side effects and maybe not so huge benefits.  A 50% reduction in risk of a recurrence might mean that 20 women were studied, half got the hormone drug, half got a placebo, only 1 woman taking the hormonal drug had a recurrence, while 2 of the women taking the placebo got a recurrence. They'd call that a 50% reduction in risk of recurrence. Not such a huge reduction in risk, in reality. Maybe I should try to get a second opinion from a pathologist.  I made a doctor mad once when I got a second opinion.

Callindearg, unfortunately it seems the diagnosis can change like that.  The sentinel node biopsy is a good thing, I think.  If they do it that way, they don't have to take out all the lymph nodes under the arm.  I met a woman years ago who had a radical mastectomy and had the lymph nodes removed and she had lymphedema that really bothered her. When they did my SNB, they injected a radioisotope and were able to identify the first nodes the DCIS drained into--don't know if they use a Geiger counter to find it or what while you're in surgery and under anesthetic, but it's got to be so much better than having all the nodes removed.

Wishing you all the best.

LWA

Hmm. FWIW, I was told that DCIS has a thirty percent chance of becoming invasive cancer (and that since they don't know which thirty percent it is, they have to treat it all).

Mine is also Grade 3 and it was a while before one of my doctors explained to me that Grade 3 DCIS is less aggressive than Grade 1 invasive cancer--you have DCIS grades 1 through 3, then invasive cancer grades 1 through 3.

Because my recurrence risk was relatively low, I decided not to take tamoxifen. I realized that I'd probably worry more about the effects of the tamoxifen than I would about having a recurrence. (As for radiation, I had a one-time dose of intraoperative radiation at the same time as my lumpectomy.)

Linda

maize

Linda,

My diagnosis was almost exactly the same.

Breast Tissues May Express Biomarkers Linked to DCIS Recurrence
http://www.cancer.gov/ncicancerbulletin/050410/page3

Joycekeisman

i was dx with dcis cribriform comedo and apocrine type with luminal mucin secretion and calcifications intermediate to high grade involving radialscar with calcificationand extending inot slcerosing adenosis with calcifications  also LCIS. e cadherin positive , ER pos 90% withsgtrong intensity PR pos with 95% with strong intensity, Ki 67 less than 5%.

trying to sort out what my options are and what this all means.  i took the BRCA test and am awaiting results  before i schedule any surgery.  my surgeon says lumpectomy and radiation 5x week x 6 1/2 weeks.  cansomeone help sort this out??

thanks

joyce 

maize

Joyce,

Sorry I didn't see your post.  What did you find out about your diagnosis? Have you had the lumpectomy and radiation?

Joycekeisman

I just had a lumpectomy yesterday. Wont know results until middle of next week. Depending in that outcome I will either do radiation or mx. Not sure which way to go. Hoping to get insight from my amazing BS, Susan Palleschi in great neck ny. Illmkeep you posted. And thank you for responding.

Joyce

BLinthedesert

Joyce, regarding your pathology report, it sounds like you have a lot going on ;-) (me too).  Basically, your report generally says that you have a mixed type of DCIS (which is very common) that is medium-to-high grade (this just means it is growing quickly -- grade 1 is slower growing and grade 3 is faster growing -- yours is somewhere between the fastest and the medium).  It is true that the faster growing cancers are more likely to recur, however, as long as your cancer is confined to one quadrant of the breast (even if it is in more than one duct, which is the worry with DCIS) then lumpectomy + radiation is a viable option.  If they find that you have widespread DCIS - in more than one quadrant (which may be the case if you don't have clean margins - or they have seen more than one quadrant on some imaging modality -- mammogram/ultrasound/MRI) then MX is the preferred treatment.

I hope you are recovering well from surgery -- and try to get some rest -- you will need it regardless of the what the next steps in your treatment will be.  Neither option is horrible -- you will be fine -- there are so many awesome people on these boards, you will have plenty of support!

Good luck to you Joyce.   

Joycekeisman

Thanks for the support BL,I am feeling better than yesterday but still (obviously) sore .

i thought I knew where the cancer was,they kept sayIng its between 12 and 1 but since the BS went in near the nipple (so less scarring) I don't really know. I will wait for the results and figure it out. From what I understand radiation should start about six week after surgery so i have time to decide what the next steps might be.

I'm glad I found this site (well I wish I didn't have to!). I've found many answers from people who have actually. Been through this

I will update when I know more

Thanks for the 'ear'

Joyce

maize

Joyce,

I hope you're feeling better and the soreness eases quickly.  My new oncologist said that when the receptors are very positive as yours are, Tamoxifen or an aromatase inhibitor are usually recommended, but it's an individual choice, too, whether you are willing to endure the side effects for the benefits, and how much actual benefit you'd get.  I got a second and third opinion and really recommend that if you have any unanswered questions or would feel more confident with a second/third opinion.  (I found out that the DCIS lesion I had was low-grade, not high-grade, as I had been led to believe, and was small, not very large, as I had been led to believe, and that women who have been diagnosed with DCIS can live many years afterward. I had the cribriform type and highly positive receptors, and the sclerosing adenosis, too.)

Glad to hear you have a great surgeon. Please do update us about how you're doing.