2nd Update on friend! Still frustrated!
 

Hi,

Thanks to everyone for your responses. I gave my friend a copy of all the posts and she appreciates everyones help.

She had her phone conversation yesterday with the Breast Cancer Clinic Onc she met with last week.

Basically he said she is ER + with the DCIS and ER - with the invasion so she is both. They are going with the ER Negative result for future treatment. They want her to do Radiation for 2-3 weeks and that's it. Nothing else, NO Herceptin, No Chemo and No Tamoxifin. My friend is back to being frustrated because she feels like something is missing, like a piece of the puzzle is missing. I agree with her but I don't think she knows what to do next.

She wants to have the test done to see if she carries the gene, another masectomy of the right breast and a hysterectomy even though she may come back that she doesn't carry the gene.

Can someone tells us about the Oncotype DX test? What is it and do you think my friend she ask to have this test done?

What do you think about her Oncs just having her do 2-3 weeks of radiation with NO future meds? Maybe this is all she needs and we are looking for something that isn't there, it's just black and white but we are seeing so much grey in her treatment.

Any thoughts or ideas you can share would again be appreciated!

Toni

Even though they could be right, Toni, I personally would take the time and trouble to go to a different cancer center for a second opinion, if possible one that is tied to a known educational institution. The biggest problem with OncoDx is expense -- somewhere over $3000, but she should get the second opinion and ask them for their opinion about OncoDx in her situation.

AlaskaAngel

I agree on the second opinion, but would also encourage your friend to start checking into clinical trials looking at whether adjuvant therapies will help reduce recurrence. Then if the second opinion coorelates with the original diagnosis and she still feels strongly that she's missing that piece of the puzzle, she could hopefully qualify for a trial and receive adjuvant treatment.

<3 Lolly

where is your friend located?
 

I know of a person with a similar story, except it was known that her DCIS was her2+ and ER + with a few areas of microinvasion. Her sentinel node was supposedly negative. She had a mastectomy and reconstruction and then during a followup visit a lymph node of considerable size was found, when an exam one month before showed no evidence of lymphadenopathy. The node was positive for her2+ breast cancer

An MRI was done, but no other primary tumor was found (the MRI was somewhat difficult to interpret because of an implant)

Her oncologist suggested chemotherapy and herceptin

She sought three opinions--two oncologists in private practice and one at a major cancer teaching hospital, who specializes in her2+ breast cancer

If you look up posts by a junior member named Nicola on this site you will see that she went from Stage 0(DCIS) to Stage 4. This is not supposed to happen by the textbooks--one theory is that there is some other area of invasive breast cancer somewhere in the breast that has been missed (or ectopic breast tissue on the axilla ) or perhaps some subgroup of her2positive tumors where only microinvasion is enough to promote distant metastasis. We are still learning about this disease--once her2neu testing is done reproducibly and well all over the world, perhaps we will discover its natural history more completely and understand its behavior better.

Hopefully Herceptin will also alter its behavior. It is only by sharing these unusual cases that we can point out the need for rethinking dogma.

MD Anderson, Stanford, Mayo Clinic , Dana Farber and Memorial Sloane-Kettering offer "second pathologic opinion" services. You can request your slides be sent their --they maybe able to estimate the price of the service ahead of time.

Has your friend had an MRI looking for cancer in her residual tissues, axilla? Again, these are best done at large teaching hospitals who are experienced in their interpretation.

For Guest Post
 

Thank you for your information. My friend lives in Michigan but may be interested in going to Sloan for a 2nd opinion. I printed out your post and gave it to her yesterday. I told her about Nicolas story but my friend is also interested in the first story you talked about. Would you please give me more information on her or can my friend contact her?

Thanks again,
Toni

apologetically, my hands are tied!
 

If you notice in my post I did not say that this was my friend. This was a woman whose oncologist asked me, as a special favor, to speak with her.

I phoned her, and then emailed her articles to help her understand her2 breast cancer as she felt she had undergone a mastectomy and as they had only failed to remove a lymph node which had now been removed that she had no further risk and that her oncologists concerns were unfounded.

I emailed her and her oncologist about the article about ectopic breast tissue in the axilla as a source of unexpected metastasis, so they could look there particularly when they did her MRI

I gave her the name of one of Dr. Slamon's collegues who sees patients for a second opinion. It became clear to me with time (or maybe this was just my take on it) that she just wasn't one to listen (or not one at this stage) to anyone and only wanted to see if she could find someone to treat her with Herceptin without chemo and/or to treat herself with phytoestrogens, so I pulled back-- with her knowing if SHE wanted to contact
me in the future she could.

Around the holidays I read your first post and that of Nicola. I couldn't find your post, but referred to it saying there was someone posting on the website who sounded as if she could be a friend of hers talking about her as well as another poster, Nicola, with a similar story. I put it off for several days/weeks but finally wrote her an email in which I put in the header of the email, that she might not want to read the body of the email but if she did, she might learn more about others ie, that despite what her original doctors had said, she was not the only one who had local recurrence in a lymph node or even more distant metastasis who started with a diagnosis of DCIS.

She responded very angrily and, although thanking me for my concern, asked me to never again be in contact with her since she felt it was my purpose to scare her.

I entertained the idea of letting her know that this website is not only for enlightenment, which can or cannot be scary depending on one's nature, but also for helping others, which can itself be therapeutic. I refrained from doing so.

This is a long explanation of why I cannot contact this lady.

I hope someday she evolves to utilize or contribute to this board, but she certainly seems light-years away from that at this time.

As I have never utilized her name or given any identifiable information I feel I have not risked her anonymity in any way.

That said, there are some pretty fine breast cancer specialists in Michigan-- Max Wicha is the big proponent of the stem cell theory of breast cancer (I believe he is head of oncology at the UM MedSchool in Ann Arbor) and Daniel Hayes is a very thoughtful oncologist at the same institution who speaks frequently on metastatic breast cancer.

Since hers is a very rare problem it is reasonable to go to Sloane for a second opinion. I would try to see someone in Michigan who is thoughtful and have them refer you to whomever at Sloane they feel would be the most likely to have encountered patients with stories similar to yours, especially if your insurance will go along with more than one second opinion.
Oncologists tend to like to treat things according to the "textbook" and it seems a textbook has not yet been written which includes cases similar to your friend's case. I plan to email to this lady's oncologist posts from this site by you and Nicola, as I know she had never encountered such a patient in her years of practice.


If I hear more follow-up or feedback from this lady's oncologist I will let you know.


This has been rather long-winded, but probably terribly unsatisfactory to you. I just wanted you to know why I was coming up "empty-handed"

Lani...
 

I'm SO sorry to read your post...ESPECIALLY since you were only trying to help. Even if that lady didn't appreciate you, WE do:) Take care.

Rhonda

"Is it Really DCIS?" article with email address!
 

Thanks for the appreciation--none required!

I rereviewed an article I found for this lady (which follows) and found it has an email address from someone on the Breast Surgery Service of Sloane. Perhaps an email to him would provide his recommendation of who to see at Sloan who has seen some of these patients. Hope this helps!:


Annals of Surgical Oncology 8:617-619 (2001)
© 2001 Society of Surgical Oncology
EDITORIAL

Is It Really Duct Carcinoma In Situ?

Hiram S. Cody III, MD, Nancy Klauber-DeMore, MD, Patrick I. Borgen, MD and Kimberly J. Van Zee, MD
From The Breast Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, New York.

Correspondence: Address correspondence to: Hiram S. Cody III, MD, Memorial Sloan-Kettering Cancer Center, 1275 York Ave., New York, NY: Fax: 212-794-5812; E-mail: codyh@mskcc.org.

To the question "Is axillary node staging required in patients with duct carcinoma in situ (DCIS) of the breast?" there are two possible responses: a short answer and a long one.

The short answer is a simple and unambiguous "no." By definition, neither DCIS nor any in situ cancer can possibly metastasize and the treatment is therefore local. The appropriate management of DCIS starts with a surgical excision of the primary site sufficient to obtain a negative histologic margin. Cure results from local control. The goal of adjuvant radiotherapy and/or tamoxifen in this setting is likewise the prevention of local recurrence. Distant metastasis is simply not a concern because survival should be virtually 100%. Three major randomized clinical trials (NSABP B-17,1,2 B-24,3 and EORTC 108534) largely support the short answer. The addition of radiotherapy or radiotherapy plus tamoxifen enhances local control but has not (at 4–8 years of follow-up) improved survival more than that obtained by excision alone: 98% to 99%. Therefore, neither axillary lymph node dissection (ALND) nor sentinel lymph node (SLN) biopsy is indicated for DCIS.

The long answer is "yes, selectively," and this is the position we support. DCIS represents a morphologically and biologically heterogeneous mix of lesions with varying malignant and/or metastatic potential. With experience comes skepticism, and the wary surgeon faced with a pathologic diagnosis of "DCIS" will immediately ask the question: "Is it really DCIS?" The grounds for skepticism are many:

(1) a fine-needle aspiration (FNA) that suggests DCIS is automatically suspect: FNA cannot differentiate between in situ and invasive cancer.
(2) a core-needle biopsy showing DCIS must be questioned as well: 10% to 20% will prove to contain invasive cancer at surgical excision.
(3) invasion must be suspected in all patients with DCIS that presents as a palpable (or mammographic) mass, as Paget’s disease (with or without an underlying mass), or as a process sufficiently extensive to require a mastectomy.
(4) missed foci of invasion are found in a small fraction of surgical excision specimens initially read as DCIS.5,6
(5) the pathologist may decide that "microinvasion cannot be ruled out."
(6) lymphovascular invasion (LVI) is occasionally found in a specimen that contains DCIS without other evidence of invasive cancer.
(7) mechanical displacement of DCIS beyond the duct lumen by either FNA or core-needle biopsy can be mistaken for true invasion.7
(8) in the most difficult borderline cases,8 expert pathologists may be unable to agree among themselves as to whether a given lesion is atypical hyperplasia, DCIS, or invasive cancer.
In the era when all DCIS was treated by mastectomy, the response of many surgeons to the above uncertainties was simply to perform a low ALND in all cases.9 DCIS now comprises 20% to 25% of all new breast cancer diagnoses, and an increasing proportion of these are treated with breast conservation; in this setting, the morbidity of a conventional ALND to find metastases in fewer than 1% of DCIS patients seems excessive. SLN biopsy, more accurate and less morbid than ALND,10 is a new standard of care for patients with invasive breast cancer. We believe it will play a significant role in the management of DCIS as well.

Cox and his colleagues at the Moffitt Cancer Center were the first to report in a series of publications11–14 the results of SLN biopsy in DCIS, finding positive SLN in 6% to 9% of consecutive unselected patients. Our own use of SLN biopsy for DCIS has been more selective;15 over a 2-year period (1997–1999, 1 year after we first began to do SLN biopsy) we performed SLN biopsy in 21% of all cases of DCIS, those "high-risk" patients in whom we were concerned that invasion might be present. Our guiding principle then and now is a very simple one: the purpose of SLN biopsy in high-risk DCIS is to identify those patients with a missed invasive component.

Our "high-risk" DCIS patients had one or more of the following: a palpable or mammographic mass, suspicion of microinvasion, high-grade histology, or extensive disease requiring mastectomy. Of 76 patients, 9 (12%) had positive SLN, prompting a complete histopathologic review of all 9. We found microinvasion in one, LVI in two, and H&E-detected macrometastases in three cases (in the SLN of two and in the completion ALND of one). That is, by conventional staging and treatment criteria, 6 of 76 (8%) high-risk DCIS patients were found to be at a substantially higher risk of metastasis than would be expected for DCIS alone and were upstaged accordingly. These six comprise only 1.7% of all DCIS patients seen during this 2-year period.

The significance of micrometastases detected only by immunohistochemistry (IHC) remains a subject of controversy. Retrospective studies using enhanced histopathologic methods on "negative" axillary nodes16,17 suggest that IHC-detected micrometastases confer a 10% to 15% worse survival, and two elegant prospective trials18,19 have found that IHC-detected bone marrow micrometastases have an independent prognostic impact exceeding that of conventional criteria. We find these data to be compelling, but a definitive answer to the significance of SLN micrometastases found only by IHC must await the results of studies in progress. Systemic adjuvant chemotherapy cannot yet become standard treatment for patients with DCIS whose SLN are positive only on IHC.

DCIS by definition cannot metastasize, yet patients diagnosed as having DCIS can indeed die of metastatic breast cancer. Although most patients who die of DCIS have first developed an invasive recurrence20 (the presumed source of metastasis), some develop distant metastasis as a first event. This was the case for 5 of 14 breast cancer-related deaths in the NSABP trial2 and 4 of 24 in the EORTC trial.4 The observation of distant metastasis from an in situ cancer is not a paradox. We would argue that these patients had missed invasive cancers at the outset, and hypothesize that SLN biopsy might have revealed this metastatic potential.

Lagios and Silverstein 21 strongly disagree and criticize our work15 in the May issue of Annals of Surgical Oncology, arguing that SLN biopsy for DCIS is a "dangerous and unwarranted direction." They suggest that IHC-detected micrometastases are artifactual; we have seen no evidence of displacement artifact in any of our carefully reviewed cases. They suggest that IHC-detected micrometastases are prognostically insignificant; the persuasive and growing body of retrospective and prospective studies referenced above suggests that they are significant. They state that we do not distinguish between IHC- and H&E-detected SLN metastases; we do. They suggest that we routinely recommend chemotherapy for our DCIS patients whose SLN are positive only on IHC; we do not. They state that SLN techniques will not be useful in predicting which DCIS patients will develop invasive recurrence; we never claimed that they would.

Finally, they argue the importance of a thorough tissue examination in all cases of DCIS. Here we agree entirely. The surprise finding of a positive SLN in patients thought only to have DCIS led us to go back and discover features which upstaged six of nine SLN-positive patients using conventional staging criteria. But should one look first to the breast tissue (ignoring the axilla), or proceed directly to the SLN in DCIS patients at a high risk of occult invasion? The correct answer for this high-risk subset of DCIS patients is probably "both."

Lagios and Silverstein argue that patients with missed invasion are best identified through more careful scrutiny of the breast tissue itself. Of their own carefully studied patients with DCIS,20 the only patients who developed distant metastasis had previously developed an invasive recurrence as a first event. Central pathology review identified missed invasive cancers in 2% of the NSABP5 and 3% of the EORTC6 patients. In our own experience, three of nine SLN-positive patients (33%) were upstaged from Tis to T1 disease after pathologic review.

We argue that SLN biopsy in high-risk DCIS will prove more useful than re-examination of the breast. Countless studies confirm that axillary node status is a more important predictor of survival than tumor characteristics. Our focus in performing SLN biopsy for high-risk DCIS is not simply to find missed invasive foci in the breast, but to identify that small subset of microinvasive cancers with metastatic potential.

SLN biopsy in this setting has a number of other advantages over examination of the breast alone. First, most DCIS is treated nationwide without the benefit of expert pathologic review. Second, surgical pathology remains an imperfect science even in the best of hands, and sampling error in the examination of breast specimens is a widespread and unsolved problem; the larger the specimen the greater the potential for error. Unexpected nodal metastases will never be identified if the examination is limited to the breast. Third, SLN biopsy is feasible in a wide range of practice settings.22 Fourth, the technology to perform serial sections and IHC stains on the SLN is universally available. Fifth, an unexpectedly positive SLN can prompt a pathologic "second look" or "second opinion" that otherwise might have been deemed unnecessary; six of our nine SLN-positive patients had additional findings on review. Finally, those few high-risk DCIS patients found to have lymph node macrometastases will actually become legitimate candidates for systemic adjuvant therapy.

For breast cancer in general, great effort is expended to achieve small differences in outcome. This is particularly true in DCIS, where survival rates remain high regardless of treatment. Very few patients with DCIS will ever develop distant metastasis, but some will. We must do whatever we can to protect our patients from the diagnostic uncertainty of conventional pathologic techniques, and SLN biopsy gives the skeptical surgeon one more tool to identify metastatic potential. Is it really DCIS? Not always.

Received for publication June 8, 2001. Accepted for publication June 20, 2001.

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