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Topic: DCIS with comedo necrosis

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jan 19, 2008 12:30AM

crazydaisy wrote:

Hi, how many people here had comedo form dcis? What kind of treatment plan did you follow. Did having comedo necrosis affect your doctors recommendations or your decsions on what to do? How about reoccurance because of it being high grade?

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Jan 19, 2008 01:47AM, edited Jan 19, 2008 02:05AM by Hindsfeet

Crazydaisy, I was dx with comedo dcis with n grade 3 tumor

size 2.5 c....

      After being dx with cancer I began searching the world wide web for answers. I tried to look at both sides, the pro's and the con's to the best treatment.

In the end you must be the one who decides what is best for you.

You are the one who is going to have to live with the results.

If your mass is multifoci or in more than one place your surgeon will recommend a massectomy. If it's dcis instu like I had you may chose to get a lumpectomy with a sentinel node removal.

Most high grade cancer or large tumors, surgeons insist on removing not only the tumor, and clear margins, but also the sentinel nodes.

If I was to do it again, I would have begged my surgeon to do the lumpectomy first, and only if the cancer was invasive to take out the sentiel nodes. Although I think she would have removed the sentinel nodes anyway, she is a very aggressive surgeon. After surgery I was glad to wake up with my breast.

 I am so grateful my axilery nodes weren't taken out. The removal of the nodes is the most painful part of the surgery. My surgery was a month ago and the sentinel scar still burns. I also had seroma, fluid from the sental node.

The removal of the nodes puts you at risk for Lymphema..not sure of the spelling. Lymphema is a permanent ailment you do not want to get. Read up on it. Everyone with node removal needs to be aware of it. And once nodes are removed you can never have blood drawn from that arm or blood pressure. These will forever remind you that you had cancer.

Personally I think it is good to understand and know what the side affects are before going under the knife.

When I first learned I had breast cancer I thought just cut it off. After looking myself in the mirror I felt a sadness, a lost and knew if at all possible I wanted to keep my breast.

Women who lose their breast, and sometimes its necessary to save your life go through grief...it's a loss.

If I were young, I would choose a masectomy with reconstruction. Radiation has side affects and can cause other cancer in 10 to 20 years. I would avoid radiation at all cost. Although I might have consider partial radiation or mammosite.

I spoke with a radiocologist/oncologist who said without treatment there was 90% I would not have a reocurrence, because my margin was wide and clean. With treatment I would have 98% not to have a reocurrence.

 There are doctors and people who say if you don't get treatent you have 40% chance of reocurrence.

Most people don't like to gamble. For me it was a gamble either way, if I went for treatment I'm gambling my life won't be changed by the side affects. If I don't, I gamble on getting cancer again, which can happen to those who are treated as well.

Think of it, everyday we take risk..Driving is a risk.

Cancer doesn't grow over night. It takes years before cancer is detected. If you choose, like me to keep a watchful eye, your survival rate is about as high as those who get treatment.

There are a lot of opinions and many will disagree with me, which is their right. Not everyone has side affects from the treatments. I chose not to get further treatments hoping that I will be one of those who are lucky not to have a reocurrece.

If it does happen I' hope there is a new medicine which will erase or stop cancer without side affects. 

If the cancer I had was invasive I would have attack the cancer full force.

You will find a lot of beautiful people here who have big hearts.

 I thought since I' didn't have treatment I could kick this and go on, but have found there are feelings you must work through. The thought that I can be vulnerable to such a disease is disarming.

There was a time bomb in me and for people like us it was found in time. Get a lot of prayer behind you, and be at peace. This is a great time to reflect, rest and heal. God bless

Remember life does exist after breast cancer.

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Jan 19, 2008 01:47PM Beesie wrote:

crazydaisy,

I agree with barry that if you have a lumpectomy, there is no reason to have a sentinel node biopsy at the same time.  For someone who has a mastectomy for higher grade or comedo necrosis DCIS, usually an SNB will be done at the time of surgery.  This is because an SNB can't be done after a mastectomy - the breast is needed for the injection of the dye.  So if a microinvasion is found in amongst the DCIS, then after a mastectomy an SNB is no longer possible and more nodes would need to be removed.  This would put the patient at higher risk for lympedema.  So doing an SNB at the time of a mastectomy makes sense.  But, for someone having a lumpectomy for DCIS, there is no reason to check the nodes until a microinvasion is found.  DCIS itself cannot invade the nodes.  So I agree that waiting for the pathology report is a good idea.  If there is no microinvasion, then you've avoided unnecessary surgery and you haven't put yourself at risk for lymphedema.  But if there is a microinvasion, an SNB can be done as a follow-up surgery.

As for recurrence rates, I just posted about this in another DCIS thread.  Comedo necrosis is a key factor that increases recurrence risk, but there are other factors (age of patient, size of area affected, size of margin) that are also important.  http://community.breastcancer.org/topic/68/conversation/694477?page=1#idx_14

I think for you the biggest factor that affects your treatment plan may be the size of the area that has DCIS.  With comedo necrosis, you really want to be sure to have good wide margins, and 4cm is already quite large, without adding in good margins around the whole affected area.  So that might lead to the recommendation of a mastectomy instead of a lumpectomy w/radiation.  And then, back to my earlier point, if you have a mastectomy, because of the comedo necrosis, it probably will be advised that you have the SNB at the same time.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 20, 2008 12:24AM crazydaisy wrote:

Thanks Beesie and Barry, I think I know where I'm headed even tho my brain doesn't want to accept it. I worked out my score on the VNPI and right now I stand at a 10. With further excision if they took 1mm more and if that wasn't enough or clear it puts me up to an 11 on the scale........not a good indicator, looks like a prime candidate for a mast. GEEZ, going to talk to doc on monday....my GP this time,then probably surgeon again asap or a referral.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 20, 2008 06:41PM joaniemac wrote:

 Hi crazydaisy,

I was dx w/DCIS, grade 3 w/comedonecrosis in 4/07. Was only 7mm in one area.  Had lumpectomy w/SNB, followed by radiation. Was 61 at time of dx. Onc. prescribed tamox but as I had hysterectomy for endometrial cancer in 2/07, have not filled prescription.  Am still on fence about it.  I tend to agree w/Beesie that SNB is unwarranted for DCIS but think that's "standard of care" at the hospital I went to.  I'm 6 mos. out of treatment & still have tenderness at SNB area at times.   Best of luck to you in whatever you decide to do & keep us posted on what's happening with you and your treatment.

Joan

Joan

Dx 4/2007, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Jan 20, 2008 07:25PM crazydaisy wrote:

Thanks Joan, I'm finding more people all the time. I like to hear of others experiences. It helps me process the reaserch I've read and form my own opinion on my situation. I've already had an excisional biopsy with wire localization to remove the affected area but they didn't get it all. From all I've read and learned so far, it can be tough to get good margins if it is a large area like mine, and teeny boobs. All indicators look like I may just have to sport a nice tattoo or something instead. Thanks for talking to me......it helps alot

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 20, 2008 08:01PM dash wrote:

I'm thankful for SNB for DCIS. They thought I had a 2 cm dcis with comedo necrosis and after choosing a bilateral, they found 3 invasive tumors among the dcis and other areas of the breast. Thank goodness they did a SNB(clean)then or else they would have gone back in and taken many more than 1 or 2. The tumors were small and hiding very deep almost to the chest wall. For me, they couldn't scrape enough breast tissue to give me peace of mind when I heard it was actually invasive not in situ. My other breast had extensive ADH and my BS said with my age at the time(40) and very far away, hormone-wise from menopause, I was a ticking time bomb. She told me that I definitely chose the right surgery as even 3 lumpectomies would not have gotten all the DCIS and IDC and since some was hiding in dense areas that they thought were clean, they would have missed something anyway. I only wanted to deal with this once with one surgery.

I'm not saying this to scare anyone but it was my experience and I think anyone with comedo necrosis should be aware that this sometimes happens. I chose a bilateral mast for many many good reasons but none of reasons were what it best turned out to be for.

My sister in law had lumpectomy with SNB and has had more trouble than me although her initial recovery was quicker. Our surgeries were only a few months apart so it's been interesting to make comparisons. She has mild lymphedema and a lot of pain and numbness. I can now feel it when I apply deodorant to my armpit that had the SNB and I wasn't ticklish there since my surgery but the other night, my teen tested it out and darn, I'm sensitive enough to be tickled! 

Lots of people talk to animals...Not very many listen, though...That's the problem. ~The Tao of Pooh

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Jan 20, 2008 08:23PM, edited Jan 21, 2008 10:02PM by crazydaisy

Hi Bay

Thanks for your post. I've read your posts on a couple other threads too. You were very lucky that they discovered what they did early enough so you really made the right choice. Geez, thats the scary part, not knowing what else could be lurking in there since not everything shows up on tests. That comedo guy is a nasty little pest eh? Need to deal with him more harshly. How much risk is there for lymphedema with a mast?? I guess that and mast are gonna become my next areas to learn about. I'm gonna have to take the plunge for my own good I think..........sigh......can't believe I'm saying it. Hope you never have to deal with it again or anyone else although I know some are. I'm telling all my sisters and women I work with to go for their mammos!!!!

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 24, 2008 02:11AM Nantotwo wrote:

Hi CrazyDaisy

I posted to you on a couple of other threads as well.  Good for you getting all the info you can.  I read and read everything I could get my hands on for a while when first dx.  This is the best site on the net.

My DCIS diagnosis was bad from right from the sterotactic biopsy, we knew we were dealing with Nuclear Grade 3 and comedonecrosis and a widespread area.  But I definately wanted to go for lumpectomy first.  Lump+Rads=Mast if of course the cosmetic outcome won't be too bad.  After the surgery margins also became an issue.  On the VNPI I also score an 11.

But we went ahead with lumpectomy and radiation and I am happy with that so far.  My mammogram in November showed no new areas of concern and I'll push for another mammo in 6 months.

My surgeon never suggested a mastectomy, he is very pro breast conservation and less invasive procedures.  He wouldn't do an SNB before the pathology from the breast came back either and as it turned out there were no micro invasions found in all that DCIS.

So far, so good.

Hey, I see you are in Port Perry, I'm actually in Eastern Ontario myself.  We get to deal with OHIP!!  Some plusses and minusses on that score for sure.

Nan

Jan 07, DCIS 9x7x3 cm, Nuclear Grade 3, Comedonecrosis, lousy margin at chest wall 0.2mm, 25 rads, 5 boosts

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Jan 24, 2008 08:11AM hopefor30 wrote:

I was initially diagnosed with DCIS -- high grade with necrosis --after excisional biopsy (or lumpectomy) they found a 3mm invasive tubular cancer --   I also had a 6cm span of DCIS, so the excisional biopsy left me very deformed -- practically half of the breast was already gone.

I ended up with a mastectomy and had DIEP reconstruction.   I didn't want to worry about a local recurrence.  In my case, the tubular cancer is very low grade and considered favorable with a good prognosis -- it was the DCIS that was nasty.

M.

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Jan 24, 2008 05:47PM, edited Mar 15, 2008 11:30AM by crazydaisy

Hi Nan, thanks for joining this thread. Your outcome is very encouraging, we need to hear that as well as we need to hear the possible other side, just so those of us with this DX aren't walking with our heads down and know to ask our doctors about all the aspects of DCIS. I guess we can say we are lucky to have OHIP. It has it's flaws but thank god it's there when we need it. Where in ONT. are you?? 

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 24, 2008 05:55PM, edited Mar 15, 2008 11:31AM by crazydaisy

Thanks, Joan, Bay and Mam, it really goes to show that DCIS isn't always just DCIS. Any one with this really needs to push for better or more testing to discover the full pathology of a DCIS diagnosis. Knowledge is power!

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 24, 2008 05:59PM 2bubbas wrote:

Hi, I thought I'd throw in my story.  I had a bad mammogram in June '06, but this was a week before moving, so it took a little time to wheedle for biopsies at the new place.  So I was finally diagnosed in August '06.  High grade DCIS with comedo necrosis, cribriform blah, blah, blah.  Had a couple of wide excision biopsies that didn't get clean margins - SNB with the 2nd w.e.  At that point, my doctor recommended the mastectomy, because she couldn't guarantee that she would get clean margins with yet another biopsy.  By that time I was ready to agree to that.  Let's get it over with.  My boob was looking pretty bad at that point, it's been lumpy all my life - easy decision for me.  The SNB took 10 nodes, all clear.  I have full range of motion and only some patchy numbness.  It's just a strip of the underside of my arm and the lower portion of my armpit.  Doesn't bother me one bit.  But I know that it does bother some people.

I did the unilateral mastectomy (after MRI confirmed that left side was okay and BRCA 1/2 negative).  Expander/implant route.  He spared what skin he could, but told me he had to go around the biopsy scar.  (yes, change in doctor, blah)  The pathology on the mast. revealed no more cancer.  None.  I'm totally okay with that.  Great, in fact.

So I'm a year and a half out and still okay.  And after what I've read, I'm glad I didn't have to go the radiation route.  I would have too because I thought terribly about mastectomies before I had one myself.

Stephanie

Stephanie

Dx 8/14/2006, DCIS, Stage 0, Grade 3, 0/7 nodes, ER-/PR-
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Jan 24, 2008 06:04PM crazydaisy wrote:

Thanks Stephanie, very famliar story......hard to get good margins with a large affected area. Sheesh!

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Jan 24, 2008 07:00PM snowyday wrote:

Hi Crazydaisy found this don't know if it will give you any info, but I sure had a shock my margin were 1mm and now I have some questions to ask.  I also had necrosis. Pearl

Introduction

Ductal carcinoma in situ (DCIS) is a noninvasive, precancerous condition. DCIS can progress to become invasive cancer, but estimates of the likelihood of this vary widely. Some people include DCIS in breast cancer statistics. The frequency of the diagnosis of DCIS has increased markedly in the United States since the widespread use of screening mammography. In 1998, DCIS accounted for about 18% of all newly diagnosed invasive plus noninvasive breast tumors in the United States.

Very few cases of DCIS present as a palpable mass; 80% are diagnosed by mammography alone.[1] DCIS comprises a heterogeneous group of histopathologic lesions that have been classified into several subtypes based primarily on architectural pattern: micropapillary, papillary, solid, cribriform, and comedo. Comedo-type DCIS consists of cells that appear cytologically malignant, with the presence of high-grade nuclei, pleomorphism, and abundant central luminal necrosis. Comedo-type DCIS appears to be more aggressive, with a higher probability of associated invasive ductal carcinoma.[2]

Treatment Option Overview

Until recently, the customary treatment of DCIS was mastectomy.[1] The rationale for mastectomy included a 30% incidence of multicentric disease, a 40% prevalence of residual tumor at mastectomy following wide excision alone, and a 25% to 50% incidence of breast recurrence following limited surgery for palpable tumor, with 50% of those recurrences being invasive carcinoma.[1,3] The combined local and distant recurrence rate following mastectomy is 1% to 2%. No randomized comparisons of mastectomy versus breast-conserving surgery plus breast radiation are available.

In view of the success of breast-conserving surgery combined with breast radiation for invasive carcinoma, this conservative approach was extended to the noninvasive entity. To determine whether breast-conserving surgery plus radiation therapy was a reasonable approach to the management of DCIS, the National Surgical Adjuvant Breast and Bowel Project (NSABP) and the European Organisation for Research and Treatment of Cancer (EORTC) have each completed prospective randomized trials in which women with localized DCIS and negative surgical margins following excisional biopsy were randomized to either breast radiation (50 Gy) or to no further therapy.[4-7] Of the 818 women enrolled in the NSABP B-17 trial, 80% were diagnosed by mammography, and 70% of the patients' lesions were 1 cm or less. At the 12-year actuarial follow-up interval, the overall rate of in-breast tumor recurrence was reduced from 31.7% to 15.7% when radiation therapy was delivered (P < .005). Radiation therapy reduced the occurrence of invasive cancer from 16.8% to 7.7% (P = .001) and recurrent DCIS from 14.6% to 8.0% (P = .001).[7][Level of evidence: 1iiDi] Nine pathologic features were evaluated for their ability to predict for in-breast recurrence, but only comedo necrosis was determined to be a significant predictor for recurrence.

Similarly, of the 1,010 patients enrolled in the EORTC-10853 trial, mammography-detected lesions in 71% of the women. At a median follow-up of 10.5 years, the overall rate of in-breast tumor recurrence was reduced from 26% to 15% (P < .001) with a similarly effective reduction of invasive (13% to 8%, P = .065) and noninvasive (14% to 7%, P = .001) recurrence rates.[7][Level of evidence: 1iiDi] In this analysis, parameters associated with an increased risk of in-breast recurrence included age 40 years or younger, palpable disease, intermediate or poorly differentiated DCIS, cribriform or solid growth pattern, and indeterminate margins. Elsewhere, margins of less than 1 mm have been associated with an unacceptable local recurrence rate, even with radiation therapy.[8] In both of the studies reported here, the effect of radiation therapy was consistent across all assessed risk factors.

Given that lumpectomy and radiation therapy are generally applicable for most patients with DCIS, can a subset of patients be identified with such a low risk of local recurrence that postoperative radiation therapy can be omitted? To identify such a favorable group of patients, several pathologic staging systems have been developed and tested retrospectively, but consensus recommendations have not been achieved.[9-12] The Van Nuys Prognostic Index, which combines three predictors of local recurrence (i.e., tumor size, margin width, and pathologic classification), was used to retrospectively analyze 333 patients treated with either excision alone or excision and radiation therapy.[12] Using this prognostic index, patients with favorable lesions, who received surgical excision alone, had a low recurrence rate (i.e., 2% with a median follow-up of 79 months). A subsequent analysis of these data was performed to determine the influence of margin width on local control.[13] Patients whose excised lesions had margin widths 10 mm or larger in every direction had an extremely low probability of local recurrence with surgery alone (4% with a mean follow-up of 8 years). These reviews are retrospective, noncontrolled, and are subject to substantial selection bias. By contrast, no subset of patients was identified in the prospective NSABP trial that did not benefit from the addition of radiation therapy to lumpectomy in the management of DCIS.[2,4]

To determine if tamoxifen adds to the efficacy of local therapy in the management of DCIS, the NSABP performed a double-blind prospective trial (NSABP-B24) of 1,804 women.[14] Patients were randomly assigned to lumpectomy, radiation therapy (50 Gy), and placebo versus lumpectomy, radiation therapy, and tamoxifen (20 mg/day for 5 years).[14] Positive or unknown surgical margins were present in 23% of patients. Approximately 80% of the lesions measured not larger than 1 cm, and more than 80% were detected mammographically. Breast cancer events were defined as the presence of new ipsilateral disease, contralateral disease, or metastases. Women in the tamoxifen group had fewer breast cancer events at 5 years than did those on a placebo (8.2% vs. 13.4%; P = .009).[14][Level of evidence: 1iDi] With tamoxifen, ipsilateral invasive breast cancer decreased from 4.2% to 2.1% at 5 years (P = .03). Tamoxifen also decreased the incidence of contralateral breast neoplasms (invasive and noninvasive) from 0.8% per year to 0.4% per year (P = .01). The benefit of tamoxifen extended to those patients with positive or uncertain margins.[15] (Refer to the PDQ summary on Breast Cancer Prevention for more information.)

Treatment Options for Patients with DCIS

  1. Breast-conserving surgery and radiation therapy with or without tamoxifen.

  2. Total mastectomy with or without tamoxifen.

  3. Breast-conserving surgery without radiation therapy. A large national clinical trial (RTOG-9804) comparing breast-conserving surgery and tamoxifen with or without radiation therapy was closed due to poor accrual and results are pending.

References

  1. Fonseca R, Hartmann LC, Petersen IA, et al.: Ductal carcinoma in situ of the breast. Ann Intern Med 127 (11): 1013-22, 1997.  [PUBMED Abstract]

  2. Fisher ER, Dignam J, Tan-Chiu E, et al.: Pathologic findings from the National Surgical Adjuvant Breast Project (NSABP) eight-year update of Protocol B-17: intraductal carcinoma. Cancer 86 (3): 429-38, 1999.  [PUBMED Abstract]

  3. Lagios MD, Westdahl PR, Margolin FR, et al.: Duct carcinoma in situ. Relationship of extent of noninvasive disease to the frequency of occult invasion, multicentricity, lymph node metastases, and short-term treatment failures. Cancer 50 (7): 1309-14, 1982.  [PUBMED Abstract]

  4. Fisher B, Dignam J, Wolmark N, et al.: Lumpectomy and radiation therapy for the treatment of intraductal breast cancer: findings from National Surgical Adjuvant Breast and Bowel Project B-17. J Clin Oncol 16 (2): 441-52, 1998.  [PUBMED Abstract]

  5. Fisher B, Land S, Mamounas E, et al.: Prevention of invasive breast cancer in women with ductal carcinoma in situ: an update of the national surgical adjuvant breast and bowel project experience. Semin Oncol 28 (4): 400-18, 2001.  [PUBMED Abstract]

  6. Julien JP, Bijker N, Fentiman IS, et al.: Radiotherapy in breast-conserving treatment for ductal carcinoma in situ: first results of the EORTC randomised phase III trial 10853. EORTC Breast Cancer Cooperative Group and EORTC Radiotherapy Group. Lancet 355 (9203): 528-33, 2000.  [PUBMED Abstract]

  7. Bijker N, Meijnen P, Peterse JL, et al.: Breast-conserving treatment with or without radiotherapy in ductal carcinoma-in-situ: ten-year results of European Organisation for Research and Treatment of Cancer randomized phase III trial 10853--a study by the EORTC Breast Cancer Cooperative Group and EORTC Radiotherapy Group. J Clin Oncol 24 (21): 3381-7, 2006.  [PUBMED Abstract]

  8. Chan KC, Knox WF, Sinha G, et al.: Extent of excision margin width required in breast conserving surgery for ductal carcinoma in situ. Cancer 91 (1): 9-16, 2001.  [PUBMED Abstract]

  9. Page DL, Lagios MD: Pathologic analysis of the National Surgical Adjuvant Breast Project (NSABP) B-17 Trial. Unanswered questions remaining unanswered considering current concepts of ductal carcinoma in situ. Cancer 75 (6): 1219-22; discussion 1223-7, 1995.  [PUBMED Abstract]

  10. Fisher ER, Costantino J, Fisher B, et al.: Response - blunting the counterpoint. Cancer 75(6): 1223-1227, 1995. 

  11. Holland R, Peterse JL, Millis RR, et al.: Ductal carcinoma in situ: a proposal for a new classification. Semin Diagn Pathol 11 (3): 167-80, 1994.  [PUBMED Abstract]

  12. Silverstein MJ, Lagios MD, Craig PH, et al.: A prognostic index for ductal carcinoma in situ of the breast. Cancer 77 (11): 2267-74, 1996.  [PUBMED Abstract]

  13. Silverstein MJ, Lagios MD, Groshen S, et al.: The influence of margin width on local control of ductal carcinoma in situ of the breast. N Engl J Med 340 (19): 1455-61, 1999.  [PUBMED Abstract]

  14. Fisher B, Dignam J, Wolmark N, et al.: Tamoxifen in treatment of intraductal breast cancer: National Surgical Adjuvant Breast and Bowel Project B-24 randomised controlled trial. Lancet 353 (9169): 1993-2000, 1999.  [PUBMED Abstract]

  15. Houghton J, George WD, Cuzick J, et al.: Radiotherapy and tamoxifen in women with completely excised ductal carcinoma in situ of the breast in the UK, Australia, and New Zealand: randomised controlled trial. Lancet 362 (9378): 95-102, 2003.  [PUBMED Abstract]

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PN

Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jan 24, 2008 09:25PM 2bubbas wrote:

Oh good grief.  They just HAD to go there and call DCIS precancerous.  (just where is that rolling eyes emoticon?)   (not trying to stir the pot, I'm just saying...)

Stephanie

Dx 8/14/2006, DCIS, Stage 0, Grade 3, 0/7 nodes, ER-/PR-
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Jan 24, 2008 10:45PM Beesie wrote:

Oh, good catch, 2bubbas.  That's a bit of a heated topic around here, isn't it? 

Rather than start up the debate anew, for those interested, here are links to two recent threads where this was discussed:

http://community.breastcancer.org/topic/68/conversation/641034?page=1

http://community.breastcancer.org/topic/68/conversation/696681

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 25, 2008 08:31AM lvtwoqlt wrote:

I originally was dx in Jan 2005 from abnormal (microcalcifications)mammo in the left breast with ADH which is pre-cancer, had lumpectomy, again fall 2006 abnormal (micro again) mammo in the right with ADH, another lump. Put on Tamox because of family history of breast and ovarian cancer, suggested by surgeon preventive bilat mx. Next 6 month mammo AGAIN abnormal (micro) on the right this timed DCIS. I said enough is enough. Had bilat mast with recon June 1, no nodes involved on either side, no chemo or rads. This week went back to surgeon for 6 month follow-up and he said only come back if I have any problems. I go next week for the finishing touches on my recon boobs in the PS office.

The final biopsy of both boobs reveled aditional ADH in the right and Hyperplaysic Ductal cells in the left.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
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Jan 25, 2008 01:47PM snowyday wrote:

Hi 2bubbas:  I see what you mean by the precancerous nonsense. Your right DCIS is cancer and I really don't understand how they can say it's precancerous, I wonder do they do that to men with prostrate cancer. Just curious and now have to look it up.  Thanks for adding your point or I would never really have understood what the whole cancer, precancer conflicts were about. And Beesie thanks for the links to the other posts they really helped me "get it" I learn something new everyday on this site and I'm so grateful for all the really smart women on it. Pearl49

PN

Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jan 26, 2008 12:04PM Voo wrote:

About prostate - they kind of do.

My brother has had elevated PSA for a few years.  It's elevated enough that many doctors would want him to have surgery or the seeds or whatever.  He sees an oncologist that he likes at Wash. U. and they are taking a wait and see approach.  The treatment choices are kind of sucky if you are as young as he is (55).  Impotence and incontinence are strong risks with surgery.

Anyway, it's the same boat.  Elevated PSA is considered precancerous, I guess.  He's in a sort of limbo where some consider it cancer and some don't.

My father had prostate cancer as well, but his PSA was so high that there was no doubt.  He ended up going to Mt. Sinai and getting the seeds (a new treatment at the time) and radiation later on.  He also went on female hormones to shrink it.  I used to joke around with him - do you feel smarter now?  His girlfriend and I both kinda liked him better on female hormones :), he was mellower.  He died right after the rads stopped, but not from the cancer.  Autopsy was inconclusive.  I still miss him every day.

So, I'm rambling, but I don't think men have it any easier with that disease.  They are fortunate that it's easily detectible with the blood test and usually slow growing, though.

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Jan 26, 2008 01:28PM snowyday wrote:

Oh Voo I'm sorry about your dad and your brother, thanks for letting me know that the same thing does exist with prostrate cancer. What I don't understand is why they are making him wait especially with your dads' history of cancer.  You werent' rambling, want to see rambling read some of my post they get longer and some days dumber all the time. I just sort of post what I'm thinking some days. I wish the best for your brother it must be so hard just waiting all the time. Poor guy, I'm sure he knows how we feel waiting and wondering as well.pearl49

PN

Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jan 26, 2008 04:15PM Beesie wrote:

There's a lot of prostate cancer in my family too.  The "wait and see" approach is very common because all the treatment options stink.  If we think we have it bad with breast cancer..... as Voo said, impotence and incontinence are big risks from prostate surgery but even the non-surgical treatments such as radiation and hormone therapy can do a number on a man's 'ability' (if you get my drift). 

I wasn't aware however that a high PSA score itself was considered a pre-cancerous condition.  A high PSA usually indicates that a biopsy is necessary; the biopsy will determine if there is cancer or possibly, a pre-cancerous lesion.  But I thought that the PSA level itself was just a marker.  Two of my relatives recently had biopsies because of high PSA levels but both biopsies came back benign.  So they are not considered to have cancer.  Still, because of their PSA scores, they both are on the 'high watch' list and are high risk to get prostate cancer in the future.  So I wouldn't however equate a high PSA score with DCIS.  With DCIS, we already have cancer cells present in our breasts; they just happen to be contained within the milk ducts rather than loose within the breast tissue. 

I believe that there are other cancers that are 'in situ' like DCIS and these are called cancer, not pre-cancer.  Bowen's disease is one example; it's a pre-invasive form of squamous cell skin cancer.  It's also called squamous cell carcinoma-in-situ.  Another example is Stage 0 Medullary Thyroid Cancer.   And colon cancer has exactly the same staging as breast cancer, with the same "Tis, N0, M0" definition of Stage 0 colon cancer.   From what I've found, it seems that only for BC is there debate as to whether a Stage 0 in situ cancer is a 'real' cancer or not.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 26, 2008 06:42PM Voo wrote:

Beesie - I've read a bunch of your posts and you are so knowledgeable!  Are you sure you're not a doctor? Wink I believe that you are right, the high PSA score in itself is not precancerous. 

You know, I actually don't know whether he has an enlarged prostate or ever had a biopsy.  I believe his score is 9 or something.  My dad's score was around 30, something ridiculously high like that.

So, I suppose high PSA is more akin to people who end up in that loop where you have an abnormal mammo or breast exam and they decide to do mammos on you every 3 mos.  I have a friend going through that right now. 

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Feb 24, 2008 08:52PM eightblueeyes wrote:

Hi crazydaisey!

I had comando high grade 3 with heavy necoris, no one ever even mentioned it to me.  I only found out from the path report!  I was not very happy about that.  

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Feb 24, 2008 10:15PM crazydaisy wrote:

Hi eightblueeyes......how'd you pick that name?? That sucks that you found out only on your path report. Did you not get that info from a biopsy earlier? I know the docs don't discuss it all...I remember reading my report too and going over it with a fine tooth comb.....then I sat down with the doc to ask about anything I did not know......I knew I had high grade before he told me because I read it prior to seeing him and had my own copy of the report.

Viv " The way I see it, if you want the rainbow, you gotta put up with the rain"

Dx 1/7/2008, DCIS, 4cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Feb 24, 2008 10:32PM larousse wrote:

Hi, had lumpectomy for DCIS in January. I have grade 3 with necrosis, but less than 1cm and clear margins.

It seemed like a no-brainer for the docs. Radiation and Tamoxifen. I am procrastinating until late March for the rads.

Reading some of these comments make me more worried. There maybe some invasive cancer that the mammo and MRI didn't catch. The only way to find out is to get a mastectomy. Would anybody in my case consider it?

Dx 12/31/2007, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Feb 25, 2008 02:32PM PSK07 wrote:

larousse - that's why they want good (negative) margins. They slice and dice the tissue to ensure that there isn't any microinvasion in the tissue outside the DCIS. The odds are with you that it was pure DCIS and that they did the pathology correctly.  The high grade coupled with the comedo & necrosis means that you really want to have the rads & tamox.

I wouldn't (and didn't) go for mastectomy with only one spot of DCIS less than one cm and wide margins.  But that's just me.

Good luck with rads.

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Feb 25, 2008 05:04PM larousse wrote:

Pam, thanks. I have been a little neurotic and getting maybe too much info from some of the thread on this site. I have to stay cool... easier said than done.

Just talked with my onc today. She reassured me that MRIs are really good at detecting invasive and DCIS and I had one. Also, chance of developing cancer from rads is really small, she said... Another big worry of mine right now.

Did you have radiation? if so, how did it go? are you taking tamoxifen? I will start that after rads.

Dx 12/31/2007, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Feb 25, 2008 06:40PM sharona wrote:

My DCIS is multifocal but in the same area of the breast, grade 3 with comedo necrosis and after 2 lumpectomies, they did get clear margins.  My follow up with my surgeon was today and we discussed my choices as 1)mastectomy or 2)rads w/ tamox.  The rads are only to insure no recurrence in that same area of the breast.  I do have a history (mother with breast cancer) and he said it is a good idea to talk to everone (onc, radiologist, plastic surgeon) to decide what is best for me.  I have been gathering info from everywhere, including great info from this board and I am seeing the oncologist tomorrow. I think the mastectomy will end up being my choice.  At first, I thought this was too aggresive but now I think it is making sense.  I am not a gambler, and I am 50 years old.  I don't want to spend the next decade holding my breath every mammogram and this ordeal has taken a toll on my nerves.  (i was diagnosed 1/25/08, my nodes are clear)

Sharona.   

Dx 1/25/2008, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Feb 25, 2008 06:50PM PSK07 wrote:

Larousse

I had rads - finished up on Dec 28. I got hit with the usual side effects, but the rad onc and his staff were terrific about taking care of things & not letting stuff go too far.  

It's so easy to get overwhelmed with information. Lots of times you just have to step back and remind yourself that every case is different & your doctors know you. It's great that you were able to talk to the onc & get her reassurance.

No tamoxifen as yet. Right after I finished rads I was diagnosed with a uterine issue that may or may not allow me to take it. Otherwise, it's all gone fine.

My rad onc recommended http://www.radiologyinfo.org which is the official web site for the American Society...and so on.

take care. (((hugs)))

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Feb 25, 2008 07:02PM larousse wrote:

Sharona,
I see, margins, the big factor for the big decision. In your case, with family history, I would also consider the safer route. The onc I talked to today about my angst, told me that I should talk to a plastic surgeon just to get a better idea of what is involved.
Safer but not easy route from what I have gathered.

Good luck.

Dx 12/31/2007, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+

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