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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: high risk DCIS and mastectomy

Topic: high risk DCIS and mastectomy

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

Posted on: Oct 12, 2013 03:59PM

jcbis1 wrote:

I got diagnosed with DCIS in May and have so far had three excisions. Last had iffy margins, radiology onc. ordered another MRI which revealed a whole new DCIS area in same breast. I had an oncotype DX test and got a result of 69-- high risk of DCIS recurrence/ invasive recurrence. I really, really have a hard time imagining having a mastectomy for a risk, rather than for invasive cancer. I'm willing to assume some risk and I'm not averse to having a different/smaller breast; the affected boob is already about 1/2 size of the other. What am I risking if I do nothing but watch and wait? What if I have a fourth excision? I guess I'm jusyt reaching out for any experiences of DCIS with a high risk of recurrence, what have you decided?

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Oct 12, 2013 04:26PM Beesie wrote:

Have you had the additional area of DCIS, the area found by the MRI, excised? Or are you thinking of watching and waiting with this area of DCIS still in your breast?

Generally the risk with a watch and wait approach is that there really is no way to monitor DCIS progression so that it can be caught just as (or just before) it becomes invasive. That's impossible. In fact if you have what appears to be more DCIS in your breast, there's actually no way to know if it really is all DCIS or if there might actually be a small amount of invasive cancer already present. When I was diagnosed, my mammo was not overly suspicious, my stereotactic biopsy found just ADH and then when I had surgery, what turned up was two large areas of high grade DCIS with comedo necrosis and a micro invasion of IDC, and no clean margins. Then I had an MRI and even more DCIS was seen - and there was no way to know if some IDC might be in there as well. So very reluctantly, I had a mastectomy. It was not what I wanted, it's not what I would ever have chosen to do, but both breast surgeons I spoke to felt that it was medically necessary. Personally I have a pretty high risk tolerance, higher than most women who post here, I think, but I would not have knowingly left high grade DCIS in my breast. It's a ticking time bomb.

In your case, consider that a 69 Oncotype score means you have a high risk of an invasive recurrence - and that's assuming that all the known areas of DCIS are fully removed with acceptable margins. If you stop now, with questionable margins and possibly another area of DCIS in your breast, I'd guess that a recurrence, and quite possibly an invasive recurrence, is virtually guaranteed.

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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Oct 13, 2013 05:29AM ballet12 wrote:

Hi JC,

I sent you a PM.

Dx DCIS, 5cm, Stage 0, Grade 3, ER+/PR-Surgery 07/27/2012 Lumpectomy (Right)Surgery 10/05/2012 Lumpectomy (Right)Surgery 10/26/2012 Lumpectomy (Right)Radiation Therapy 01/10/2013 External
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Oct 15, 2013 12:43PM SJW1 wrote:

Hi JC,

After a lumpectomy for DCIS in 2007, I was told that 4 of 6 of my margins were not clean and that the DCIS remaining was intermediate to high grade. I was told I should have a mastectomy, but also did not want a mastectomy for non-invasive stage zero breast cancer.

I then had an Aurora dedicated MRI (used only for breast imaging) which found 2 suspicious areas. I had both biopsied and both were benign, so again wondered why I needed a mastectomy.

My surgeon told me about Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use. After evaluating my post surgical pathology and all my imaging, he disagreed with the local pathologists and said that not only did I get good margins, but he also downgraded the DCIS that had been removed from intermediate/high to low grade DCIS.

He also used the Van Nuys Prognostic Index, which is another way to assess your risk of recurrence, to calculate my risk (without radiation) as only 4 percent. Based on my consult with him, I decided to omit radiation and tamoxifen. Instead I started focusing on other more holistic ways of risk reduction, such as diet, supplements, exercise, limiting alcohol and bio-identical hormone balancing.

Although your situation is not the same as mine, getting a 2nd pathology opinion from a true expert like Dr. Lagios may be something that will help you determine what direction you should go. This is especially true because pathologists disagree up to 25 percent of the time and all treatment recommendations emanate from your pathology results.

Left alone, 60-80% of all DCIS may never become invasive. However, if you really do have high grade DCIS, this could mean that you have about a 40% chance of getting invasive cancer.

That being said, if you truly can not bring yourself to do a mastectomy, Dr. Laura Esserman and a few other oncologists are pushing for active surveillance for DCIS, however so far only if it is low or intermediate grade. In addition, Dr. Shelley Hwang is doing a clinical trial of using tamoxifen prior to and sometimes instead of surgery for DCIS patients. You could also contact Dr. Mel Silverstein who does oncoplastic breast reductions in lieu of mastectomies.

I bring all these ideas up to suggest that you may have other options. It depends on how much you do not want a mastectomy. Since for now, your DCIS is non-invasive you don't need to rush into anything. You have time to keep searching until you find what feels right for you. No matter what treatment options you choose, there are no guarantees.

Please feel free to PM me if you have any questions. You can also read more of my story at:

http://dciswithoutrads.com/

Also for additional ideas and info re DCIS please feel free to explore a new website that another DCIS friend and I have developed at:

http://dcisredefined.org/

Wishing you all the best,

:) Sandie

Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Oct 15, 2013 03:12PM Beesie wrote:

Sandie, I'm interested in your comment that "if you really do have high grade DCIS, this could mean that you have about a 40% chance of getting invasive cancer." Everything I've read suggests that the rate of invasion from high grade DCIS is likely to be significantly higher than that, particularly if some high grade DCIS is left in the breast. Do you have a source for the 40%? I'd be interested to read it.

"The natural history of DCIS varies according to the grade of the DCIS detected. The natural history of low grade DCIS is that approximately 60% of lesions will become invasive at 40 years follow-up. The natural history of high grade DCIS derived from local recurrence rates within high grade DCIS lesions, which have been inadequately resected and not given radiotherapy, suggests an invasive risk of at least 50% at 7 years follow-up. Given the average life expectancy of women with screen-detected DCIS is 25 years, this suggests high grade DCIS is an obligate precursor of invasive disease."

Ductal carcinoma in situ (DCIS): are we overdetecting it?

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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Oct 20, 2013 11:20AM SJW1 wrote:

Beesie,

Yes, I have seen better numbers than the study you cited. Below are a couple of quotes from Dr. Susan Love who consistently puts the rate of untreated DCIS recurrence at between 30 and 40 percent. She also states that it doesn't matter if it is high or low grade. (Something I hadn't ever heard before).

Also the link below from Dr. Michael Baum says up to 80 percent of all untreated DCIS would never become invasive.

Although these percentages differ significantly from the study you cited, I am guessing that the actual percentage is probably somewhere in between.

The takeaway is that if a woman is diagnosed with DCIS, she should not panic and allow her fear to drive her into an unnecessary treatment. Instead, she would do well to do her research seeking out 2nd opinions until she is able to determine her personal risk with and without the treatment offered.

Susan Love:

Historical studies show that most DCIS remains dormant and only 30-40% of cases will ever progress to invasive cancer.

http://cbcrp.org.127.seekdotnet.com/research/PageGrant.asp?grant_id=5126

Both high-grade DCIS and low-grade DCIS have a 30 percent chance of developing into an invasive cancer if left untreated. The difference is that high-grade DCIS does it faster and becomes a more aggressive invasive cancer while the low-grade DCIS does it slower and becomes a less aggressive invasive cancer.

http://www.dslrf.org/breastcancer/content.asp?CATID=15&L2=2&L3=8&L4=0&PID=&sid=132&cid=563

Dr. Michael Baum

In the hard-hitting article "Epidemiology versus scare-mongering," UK cancer expert Professor Michael Baum attacked health professionals for scaring women into unnecessary treatment. Baum has 30 years of experience as a breast-cancer surgeon at the Royal Free Hospital and, in his view, if left untreated, as many as 80 per cent of all DCIS cases will never become cancerous (Breast J, 2000; 6: 331-4).

http://ahha.org/articles.asp?Id=95

Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Oct 20, 2013 12:03PM Beesie wrote:

Sandie, I've seen those quotes before, but from what I can find, those appear to be personal opinions, unsupported by data. Or there is a small amount of data that is very stretched and convoluted to reach those conclusions. The data on the risk of DCIS converting to IDC seems for the most part to be based on low grade DCIS; there is very little data on high grade DCIS. I have seen other quotes from other experts who say that they believe that 90% - 100% of high grade DCIS will eventually become invasive... but generally these quotes don't have data to support them either.

For me what always puts into question the low numbers is the fact that many very reliable studies have shown that even when DCIS is surgically removed, and sometimes treated with rads and/or hormone therapy, if some DCIS cells remain and are not killed off, 50% of the recurrences that develop are not found until the cancer has become invasive. So this would suggest (to me, anyway) that the risk of DCIS not removed becoming invasive logically will be quite a bit higher than that.

It would be nice if we had more data on this, but women with high grade DCIS almost always have surgery so there just are not many cases to follow to see what happens.

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