get enough treatment without overtreatment
Comments
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Hi Blg4
My surgeon recommended mastectomy for my DCIS because the area was too large for a lumpectomy. Another factor to consider is how high grade your DCIS is. I had DCIS and LCIS in the other breast two years ago and was able to get that all removed with a lumpectomy and radiation. But this time the DCIS was too spread out. Doctor said there are no good studies that show the watch and wait approach is good over the long term. Adding up the cancer on the left side and this second go-round on the right side, I felt like I am in a high risk category which helped me make up my mind. Hope this helps.p
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"If I did implants they have been known to leak, cause cancer, etc. Newer ones are out there but too new to know the dangers. Also the breast surgeon (not the plastic surgeon) said that implants would not be good for me because of the shape of my breasts. (Thanks a lot, plastic surgeons for not telling me that.)"
The new silicone implants have a more cohesive filler that stays put very well even when the shell is compromised. I have never heard of implants causing cancer, if there is evidence for this I would like to see it. I have also never heard of a woman being denied implants because of the shape of her breasts. I definitely would trust a qualified plastic surgeon's opinion over a breast surgeon on that front.
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Big4:
While I am responding to your questions above, please understand that I do not in any way support the approach of endocrine therapy and monitoring (instead of immediate surgery) in your case.
The following is for information only. I am a layperson with no medical training and there may be factual errors or errors in my understanding. All information should be confirmed with your providers to ensure that you receive accurate, current, case-specific expert professional advice.
With issues in both breasts diagnosed pre-menopause, and possibly multi-focal disease on the right, you may wish to inquire about a referral to a Genetic Counselor to discuss whether you are a candidate for genetic testing, and if so, if testing is right for you. Family history alone (of breast or other types of cancer) and/or certain results of genetic testing may significantly alter understanding of risk profile, and could make a person unsuitable for Dr. Esserman's approach.
In my understanding, Dr. Esserman's approach is currently used in a very limited number of highly selected patients with DCIS that is deemed to be of lower risk. [EDIT: Clinical trials specifically designed to investigate the non-inferiority of active surveillance alone for the management of low-grade DCIS have been initiated, but none completed.] Accordingly, it is an approach that is not included in current evidence-based clinical consensus guidelines for the treatment of breast cancer promulgated by the National Comprehensive Cancer Network (NCCN) (Professional Version, 1.2016). For DCIS, the NCCN guidelines provide three general options based on clinical presentation, all of which include surgery:
- Lumpectomy without lymph node surgery + whole breast radiation therapy (category 1)
- Total mastectomy with or without sentinel node biopsy ± reconstruction
- Lumpectomy without lymph node surgery without radiation therapy (category 2B)
As you are not her patient, and she does not have access to all your medical records, such as all imaging results and medical history, she cannot intelligently opine on whether or not you are a suitable candidate for her approach or if the risks could outweigh possible benefits. Thus, she has referred you to your surgeon in this matter, and provided limited general remarks.
Dr. Esserman's initial comment to you is the threshold question to ask your surgeon (an expert clinician and not a nurse). In particular, she said:
"She said to ask if endocrine risk reduction would be appropriate for me."
This goes to the question of whether or not you are a suitable candidate for the approach. If you are not a suitable candidate, the remaining questions and issues would appear to be moot.
To ensure thoughtful consideration of this threshold question, it may be helpful to provide your questions and context in writing in advance of meeting with your surgeon to discuss them:
(1) I have read about Dr. Esserman's approach, and I am concerned about over-treatment. Instead of surgery at this time, would endocrine risk reduction be appropriate for me?
(2) [EDIT: If so, why?] If not, why not?
Please explain [in either case] with reference to the results of my imaging and pathology to date (e.g., extent of disease, grade 3, solid, focal central necrosis, two abnormal appearing internal mammary chain lymph nodes), clinical presentation (e.g., personal and family history, pre-menopausal diagnosis, issues in both breasts, possible multi-focal disease on right, [EDIT: genetic test results]), and risk profile.
(3) Is it safe to delay surgery in my case, with the addition of endocrine therapy? What are the possible risks? What are the possible outcomes?
(4) In the ~ 6 cm of disease, if there is a small area of invasion already present, with endocrine therapy and monitoring, is there any risk of metastasis to distant sites (incurable Stage IV disease)?
(Btw, I believe the answer to the last question is yes. Some small invasive tumors have the ability to metastasize. Endocrine therapy can fail even with hormone-receptor positive disease. A possible invasion may differ from the associated DCIS in ER and PR status (e.g., be ER negative and PR negative) and as such, may not respond to endocrine therapy at all.)
Endocrine risk reduction therapy for DCIS (without surgery) requires monitoring. The ability to effectively monitor disease via imaging (and possibly additional biopsy) is very important. In at least one trial, MRI is being used. Thus, additional questions may include:
(5) If I were to delay surgery, how will disease be monitored (what imaging techniques are used, which are preferred, and at what frequency)?
(6) What are the limitations of such imaging methods in general in detecting new or worsening disease?
(7) Are there any current imaging or pathology findings that may raise concerns about the potential efficacy of monitoring in my particular case? (e.g., heterogeneously or extremely dense breasts by mammography? disease that is occult on MRI?)
In this regard, please consider the efficacy of monitoring in your case, in that you have been diagnosed in the first instance with what appears to be extensive DCIS.
These are just example questions, and there may be other important questions that I have not thought of.
In the limited number of cases where patients may be deemed suitable candidates for this [
untested]approach [still under clinical investigation] and are fully informed of the risks, they do not proceed to surgery. Instead, if they have hormone receptor-positive disease, they receive "endocrine risk reduction" or a form of endocrine therapy. An aromatase inhibitor is a type of endocrine therapy used in post-menopausal women (e.g., who have had an oophorectomy or 12 or more months without a period). Tamoxifen is another type of endocrine therapy that is used at least in pre-menopausal women undergoing standard treatments.The original NPR article you posted describes an example of the general approach taken in 2 patients (emphasis added by me:
"After seeing Esserman, MacDonald decided not to have surgery, at least for now. Instead, the doctor put her on hormone suppression therapy [my note: endocrine risk reduction or endocrine therapy]. McDonald now takes a drug that blocks estrogen. Because her DCIS cells are fueled by estrogen, the hope is that once they are starved of the hormone the cells will shrink and perhaps even disappear.
MacDonald says she realizes she may end up needing surgery anyway, but if so she'll be clearer about the decision.
She's hoping her case will turn out like another of Esserman's patients, Barbara Mann. Mann took an estrogen-blocking medication as well, for six months. Today, an MRI scan and biopsy show no trace of DCIS in her breast.
. . . But it's an option that will require lifelong vigilance. Anyone who chooses not to have surgery will have to be watched carefully and have routine mammograms and maybe even MRI scans and biopsies."
It is important to understand, that a person who elects this strategy may incur additional risk, and may still not be able to avoid surgical treatment.
Again, please note the expert I quoted in an earlier post:
"Dr. Shelley Hwang, chief of breast surgery at Duke Cancer Institute in Durham, N.C., said she also sees DCIS patients who would rather watch it than treat it. But she noted that doctors don't yet have conclusive proof that certain types of DCIS can safely go untreated."
Dr. Esserman also mentioned to you: "You can send an oncotype DCIS and if low or intermediate risk, you can think about hormonal therapy first to see how it goes."
I was not aware that the "Oncotype test for DCIS" was used in connection with Dr. Esserman's approach. As kayb said, as a practical matter, the availability of an adequate amount of suitably-prepared and representative tissue to run the test may be an issue with DCIS diagnosed by minimally invasive methods.
Perhaps, in the context of Dr. Esserman's approach, the Recurrence Scores and associated estimates of recurrence risk from the test are being used in an unconventional manner to assess the risk posed by the DCIS. I have no information about this or the scientific rationale for this use or the strength of the rationale. You may wish to inquire about it, if it becomes pertinent.
The Oncotype test for DCIS was developed for use in patients who have undergone breast conserving treatment (lumpectomy) to aid in decision-making regarding radiation treatment. Accordingly, it is not routinely used, or clinically validated for predictive value regarding recurrence risk, in patients undergoing mastectomy, who often have more extensive disease and who may have undetected invasive disease. The test population which was used for validation does not appear to include patients with any kind of invasion or micro-invasion (as determined from extensive post-surgical pathology). At this time, it is unknown whether your disease is within the scope of current clinical validation of the test (e.g., if you do have undetected microinvasion), or whether it could accurately determine risk in a case such as yours.
For those with pure DCIS in a breast [EDIT (Feb. 8): definitively ascertained by post-surgical pathology], the DCIS test generates a Recurrence Score which is an individualized estimate of 10-year risk of any local recurrence (DCIS or invasive) and invasive local recurrence following treatment by breast conserving surgery alone (i.e., risk after surgical removal of the DCIS). Depending on the score, the risk is classified as either low, intermediate or high risk. For example, a score falling in the low risk range may have a lower risk of recurrence, and if other clinico-pathologic factors are consistent, [EDIT (Feb. 6):
the benefit of radiation therapy may be smaller and would probably not outweigh the risks of side effectsa person may choose to decline radiotherapy.]However, the test is not used as a stand-alone test for this purpose. It is used to predict the risk of recurrence without radiation therapy in a patient who has received surgical treatment (lumpectomy) and is known to have pure DCIS, and is used in conjunction with all other relevant information to reach a decision about risk/benefit of radiation.
In my understanding, the use of this test to determine risk for purposes of electing endocrine therapy plus monitoring in lieu of surgery appears to be outside of the validated purpose and current established clinical use of the test. Note that even for the validated use, the NCCN guidelines do not yet include the Oncotype test for DCIS, which may reflect some lack of consensus among clinicians about its utility/value.
It is important to understand the caveats and risks in order to make an informed decision.
For more about the standard uses of the Oncotype test for DCIS, see my posts here:
https://community.breastcancer.org/forum/109/topic...
https://community.breastcancer.org/forum/68/topics...
Please note that the Onctoype test for invasive disease is a different test, used in patients with established invasive disease to decide the question of chemotherapy.
In my opinion, observations that raise the question of potential over-treatment in certain patient sub-group(s) are not necessarily proof of over-treatment in any particular case. Such observations do not establish that more limited treatment regimens would be safe and effective compared with standard treatments. To my knowledge, specific pathological features that consistently and reliably establish "low risk" disease are not well-characterized. Surgery may reveal the presence of more extensive DCIS or higher grade DCIS, which could alter understanding of actual risk. Surgery may also identify the presence of existing invasive disease. Current methods of surveillance are not able to reliably detect the onset of invasion (assuming it is not already present), and some small invasive cancers could have the potential for regional and distant spread. For these and other reasons, the number of low-grade DCIS patients today who decline surgery and elect a "watch and wait approach" is small, particularly outside of a clinical trial. The choice may be right for them in light of their personal risk tolerance.
The majority of patients elect treatment in accordance with the current consensus guidelines, such as those from the National Comprehensive Cancer Center (NCCN) regarding Breast Cancer treatment (Professional Version 1.2016), available with registration at no charge at NCCN.org, which include surgery for DCIS.
http://www.nccn.org/professionals/physician_gls/f_...
In the latest version (1.2016), the charts up front have been updated, but the accompanying text is still under revision and may be out of date in some respects. It includes an extensive bibliography.
BarredOwl
[EDIT (Feb 6): The test does not predict benefit from radiotherapy, but may help better gauge the risk of recurrence, in connection with the decision-making process re radiotherapy.]
[EDIT (Feb 8): definitively ascertained by post-surgical pathology],
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Iam so glad you just posted this. Guess what I'm not Angelina Jolie either, but this is what I've been thinking about this.
I am BRAC 1 and 5 yrs ago did a dbl. prevent. mast. guess who just found out the other day that I have cancer and its DCIS in situ, a 1 inch tumor no margins. It was in a area that a mammogram would not have picked it up, and my DR. was wanting me to get a mammogram and I asked him and his assitant's why not a ultrasound of the surrounding areas. NEVER got back to me (this was last Feb.) came up with a lump in Oct. and I thought well surely it's just scar tissue or clogged lymphnode (because I've had this situation before) then holidays came and I said well if it doesn't go away I will get it looked at in the New Year. about 2-3 weeks ago-it seriously doubled in size overnite. Got it out 1" tumor going to Onco. Friday for the next step. What do you all think of this -after reading the article I'm like hmmmmm. Suggestions or thoughts please I welcome them!!! Treerock
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I like your in-depth answer, I am still trying to digest issues in my own situation, so some of this info. is a little foreign yet. I know that being BRAC 1 I am not common (same as Angelina Jolie) but I am the first preventive BRAC 1 that now has cancer and I wish my Dr. would have not dropped the ball, because when they called about a mammogram last year I said what about a ultrasound on the surrounding area-because of the reconstruction area will not be actual breast tissue per say and I'm concerned about the area that mamo. don't get to like armpits ,collar bones ,etc..said she would get back to me never did, I frankly thought I guess no worries, other visits between then and Dec. nothing was mentioned about it and I truly thought this was just scar tissue- til' it doubled in size over nite...
I would like your thoughts on that.
1" tumor malignant tumor removed 2/2/16, no margins , 4 clean lymph nodes removed, clean margins just before the muscle 2" down, going to see the Oncologist for the first time tomorrow the 5th.
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Hi treerock:
Your situation is very different from big4's. I saw your post here before:
https://community.breastcancer.org/forum/62/topics...
I think Lintrollerderby's reply to you was very informative and on point.
I do not know what the current recommendations for screening are for patients with BRCA1 who have undergone prophylactic bilateral mastectomy (PBMX), or what the guidelines indicate regarding endocrine therapy in such cases. I think the NCCN guidelines for "Breast Canceer Risk Reduction" and/or "Genetic/Familial High-Risk Assessment: Breast and Ovarian" may be implicated, but they are beyond my understanding. These may provide more than one reasonable option in any particular case.
You may want to start a thread to ask others similarly situated about what (if any) additional risk reduction and/or screening measures they received following PBMX. Different patients may be differently situated (e.g., age) and have different degrees of risk, depending on their particular mutation and/or personal and family history, and may appropriately receive different advice. In addition, the patient's personal risk tolerance may factor in to the screening and risk reduction measures they ultimately elect.
In one of my family experiences, I learned the importance of being very proactive about patient care and to trust but verify. We learned the hard way about the need to keep reminding providers about co-morbid conditions, among other things. It seems both ludicrous and counterintuitive when the stakes are so high to us personally, but medical personnel are like everyone else. Not getting back to a person can easily reflect some failure in following up on the inquiry. This is easy to say, but in practice, it is hard to be proactive, and I was not always the best advocate I could be for myself.
I wish you the best as you move forward with treatment.
BarredOwl
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Yes Lintrollerderby's response was good. Since than I did get my pathology report back and found that it was 35% estrogen based ductal situ, anyway. And yes I know that I am the one that should stay on top of my health, I guess I'm just thinking that it seems to me although the percentage on mutation genes are small comparatively that when a Dr.'s office "has one" -the standards should not be set in rock to the point that you feel like either your are disregarded or that you have nothing to worry about, etc... I think that really not all but many Dr's. office's do not understand the need to further the preventive situation and don't look at it like they should. At least that is how I feel my Dr.'s office approached it. I have mentioned to them several times that I am BRAC 1 and all they want to do is offer a yearly mammogram and when I've asked for other things regarding the situation looking back, I'm beginning to feel like they have had a deer in the headlight response to what I've asked for, thus making me feel that I either didn't need something or unimportant. Not sure yet, just coming to realize this. Perhaps it's time for a new Dr. I don't know all this is relatively new to me as well- the terms and so many kinds, maybe I'm just overwhelmed.
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HI treerock:
Doctors and patients may depart from what guidelines provide in the appropriate case. I do not know what guidelines your providers used to determine your care. You may wish to ask them what guidelines they follow. If you engage new providers, for your information, you might ask them whether your past care was within consensus guidelines applicable to you with respect to screening and risk reduction post-PBMX.
I agree that you may wish to look for a team with greater experience and expertise in treating BRCA-positive patients, including breast surgeon, medical oncologist, and radiological oncologist (if applicable).
Such expertise may be more likely to be found at places such as NCI-designated cancer centers, if any are near you:
http://www.cancer.gov/research/nci-role/cancer-cen...
Optionally, others have recommended NCCN member organizations:
http://www.nccn.org/members/network.aspx
BarredOwl
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big4:
FYI, I edited my long post a few times.
BarredOwl
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muska, please explain why LCIS is hard to find on imaging? and all kinds of imaging?
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kayb, I had a sterotactic biposy on both sides.. is that enough tissue or it doesn't matter since it was used for the other tests they did? Dr Esserman was talking about oncotype dcis not oncotype dx.
treerock you need a 2nd opinion.
BarredOwl... I read your post after you made the comment about doing edits..
I had the brca test done but I did not talk directly with the person who did it. I was told I had a variant that was not know about.. whether it was significant or not. I did not have the bad mutations. Is this the same as a genetic counselor?
thanks for all that info... I did not know about the specific details you brought up.. but that was my basic understanding of the issue... that the jury is still out on how to treat people with DCIS.
I remembered I asked my 2nd opinion Dr, Dr Ben Anderson about "the stories in the news". He said there isn't a way to know who is in the group that would benefit from less treatment. Also that the area of my DCIS is too large. From what I have read on the topic that is what I understand. About it being too large.. most studies are only studying women with smaller areas of DCIS
I sent Dr Esserman a few more emails before she responded. Here is the last one I sent and her responseme...
Sorry for sending several messages in a row... I now remember that I previously asked Dr Anderson about "the stories in the news" on the issue of overtreatment of DCIS. I did not have the names of any specific therapies at the time. He said the overtreatment issue did not apply to me due to the size of the DCIS area. I think he will just say the same thing if I tell him the therapies you mention. I would probably have to have somewhere to direct him to studies proving the methods would work in my case. I feel if I go in unprepared he will just shoot down my argument again. The studies I have seen are with women with smaller areas of DCIS than mine. I think I saw one in the UK that covered women with larger areas of DCIS. As far as I know the studies aren't completed yet.
Maybe there is a way you could look at my records and/or discuss it with him. Of course I would be willing to pay for it.
Thank you so much for taking the time to discuss this with me.
Dr Esserman's response... (more comments from me after her email.)
You may very well need more therapy because the DCIS is high grade. It depends on the biology. Your DCIS is strongly hormone positive, so it is worth thinking about a trial of hormonal therapy up front to test response. If you are premenopausal, the best strategy is ovarian suppression and an aromatase inhibitor. If postmenopausal, you just need an aromatase inhibitor.
I noticed on your report that they were concerned about your lymph nodes. Did you have a biopsy to see if they had tumor? That would change things of course.
I know Ben, and I know that he would be willing to have a conversation.
----
I have not commented to this email yet...
I assume I am considered pre menopausal because I had a period last month.
About the lymph nodes I was told it was due to the recent biopsy. Neither surgeon seemed concerned by them.
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Hi Marijen, from what I know LCIS is often missed on imaging. Check this thread: https://community.breastcancer.org/forum/95/topics/806009?page=1#idx_26.
My LCIS was found incidentally by post-surgery pathology: 'very extensive' LCIS is the presumably healthy breast and a large LCIS in the breast with IDC/DCIS. Multiple mammos and pre-surgery MRI didn't show LCIS in my case.
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Thanks musky, I went there. Very confusing, or I'm just too tired
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Big4:
I don't know whether you met with a Genetic Counselor or not. You need to check the qualifications of the person you met with.
Please keep in mind, that testing negative for a pathogenic mutation in BRCA1 and 2, or even testing negative upon larger multi-gene panel testing, cannot exclude the possibility of a genetic component.
If you have not already done so, you need to inform your surgeon about the results of your genetic testing by providing him with a copy of your genetic test results.
Please realize that most patients with high grade, extensive DCIS are more concerned about under-treatment than over-treatment. Thus, many doctors do not emphasize possible less favorable factors at initial diagnosis, as there is some uncertainty until surgical pathology is fully available, and they prefer to address actualities.
You should ask whether it is possible that the lymph node observations have an explanation other than recent biopsy, and whether this can only be resolved by further biopsy and/or surgery.
The jury is not really out about how to treat DCIS. The guidelines are clear and are based on currently avaialable clinical evidence, which admittedly may leave open some questions. There are many medical interventions which entail some risk of over-treatment (e.g., radiation therapy, chemotherapy), and which may be refined or improved upon in the future based on new clinical data. However, with cancer, the consequences of under-treatment can be severe. Studies underway may provide information one day. They may confirm current approaches to treating DCIS are appropriate, or they may lead to some changes or refinements in current practice, at least in some subset of patients. Unfortunately, we don't have the results of those trials today, to guide our decisions.
There is no "goldilocks" point in cancer, and no one knows for certain in choosing a treatment plan whether it is over- or under-treatment until later on,
if things go poorly[edit: and not even then]. However, you may incur unnecessary risks, including risk of under-treatment, by seeking treatments that fall outside of the current standard of care and are experimental in nature.To make an informed decision, you need answers to the sample questions above, and probably more. You need to fully inform the providers who are advising you of all relevant information, and work with them to decide what is best for you. Hopefully, you can come to a conclusion in good time before your scheduled surgery date.
I do hope you reach a point where you are comfortable that your current surgical plan achieves a reasonable balance of risk/benefit, on the best available clinical evidence today.
BarredOwl
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For more viewpoints on the subject, see:
https://community.breastcancer.org/forum/68/topics...
BarredOwl
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Correct me if I’m wrong, but don’t some doctors (e.g., Dr. Susan Love in her "Breast Book“) consider LCIS (as opposed to DCIS) to not even be cancer despite the “carcinoma” in its name? Supposedly, it’s far less likely to mutate, escape the lobule and become ILC (which I understand may be more aggressive than IDC)? I also thought that “Grade” is independent of hormonal-receptor status, but based rather on extent of cell differentiation, % of tubule formation and proliferation rate. Also, isn’t Oncotype DCIS mostly for deciding whether radiation is indicated for ER+ DCIS if lumpectomy rather than mastectomy is to be performed? Whereas mastectomy makes sense on the right (DCIS) breast, it is probably overkill on the LCIS breast unless and until invasive lobular and/or high-grade DCIS is discovered. Excisional biopsy of the LCIS, since MRI doesn’t show the LCIS, is probably the only way to determine whether the next course of action for the L breast is either surgery or just diligent surveillance.
I think the gist of this, as far as the R breast is concerned, that the DCIS in there may be too large to make Lx practicable absent oncoplastic surgery; the grade too high to forgo surgery of some sort ; and the hormone-receptor status a good indicator for adjuvant endocrine therapy (the grade may mean the tumor is too aggressive to chance delaying surgery for a trial of neoadjuvant endocrine therapy).
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LCIS is just a marker of being higher risk Sandy. It isn't treated like DCIS. It is poorly understood & the majority of women with LCIS don't go on to develop cancer. Many places are "rebranding" it Lobular Neoplasm to eliminate the "carcinoma" confusion.
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BarredOwl the reason I said the jury is still out is because we don't know if the current studies will show lesser treatment works or not. They know how to effectively stop the spread of cancer by removing the DCIS area (or mastectomy in some cases). The jury is still out on what cases this treatment might be overkill on.. and they could just treat with hormonal therapy or just watching and waiting. Dr Anderson said there is no way to know at this point what women will go on to get cancer and what ones could just be watched. (I don't think Dr Esserman would know either unless she knows of some study I have not heard of which is totally possible.)
I was first seen by a resident? before Dr Anderson. I showed him my genetic results. (It is a teaching hospital.)
What I need to feel comfortable in my decision is someone like Dr Esserman that believes in hormonal therapy.. to tell me it is reasonable for me to try these newer approaches. I don't want to be the guinea pig though. Since the area is large I don't feel I have the time to try. If she knew my case better she might recommend against it herself.
I will see what Dr Esserman responds later if she does, and probably call Dr Anderson again in the morning. Say I need to talk to him directly not a nurse that doesn't know what I am talking about.
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Big4:
Having some hormone-receptor positive disease is simply a base criterion to administer endocrine therapy. It is not a property that establishes "low risk" disease.
If the endocrine therapy drugs are not contraindicated, and if tolerated (and some patients do not tolerate it - see the threads), endocrine therapy does not work in all patients with hormone-receptor positive disease. For example, even patients with pure DCIS (and no evidence of invasion) whose disease has actually been removed by surgery (lumpectomy plus radiation) and who are treated with endocrine therapy may still experience opposite or same breast recurrent or new disease (DCIS or invasive).
A person who is to receive endocrine therapy (e.g., tamoxifen or an aromatase inhibitor alone, or either in combination with ovarian suppression) should consult a Medical Oncologist and understand the risks and what may or may not be achievable.
BarredOwl
[Edit: we have cross-posted -- Remember "watching" means you are also depending on imaging to monitor disease while on endocrine therapy. Your disease is said to be largely occult (invisible) by MRI, which is unusual and would be a significant concern in my mind.]
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The differentiating factor between comedo-necrosis and focal central necrosis is the amount of necrosis found in the specimen. Focal means a small spot and central simply refers to the location. I believe most necrosis is central. When comedo is specifically stated, it refers to extensive necrosis versus a small spot. Natuarally then, most comedo types are Grade 3, while focal necrosis can be found in lower grades. Generally though, necrosis is not found at all in Grade 1 types. Comedo is a risk factor for future recurrences and invasive cancer. Grade three is also a risk factor and can be due to architectural factors such as solid type. I just wanted to clarify this as necrosis is very common and is not the same thing as comedo-necrosis.
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Thanks, and here is a more recent article (2013) with additional explanation of grading systems and types of necrosis (see Comedo type and Non-comedo type):
http://www.hindawi.com/journals/ijbc/2013/914053/
BarredOwl
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Btw, the name of the test for DCIS is indeed OncotypeDX for DCIS:
http://breast-cancer.oncotypedx.com/en-US/Patient-...
As I indicated above, in my understanding, the use of the DCIS test to determine risk for purposes of electing endocrine therapy plus monitoring instead of surgery appears to be outside of the validated purpose and current established clinical use of the test (i.e., the test is used post-surgery, in patients who have already received breast conserving treatment for the purpose of assisting in deciding the question of radiotherapy).
Eligibility: http://breast-cancer.oncotypedx.com/en-US/Professi...
i do not know the scientific rationale for the proposal. It is possible that it would be considered by many as an experimental use.
BarredOwl
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"Having some hormone-receptor positive disease is simply a base criterion to administer endocrine therapy. It is not a property that establishes "low risk" disease."
I am not sure of the reason for the above comment... I know that whether or not a person's disease would respond to hormone suppression has nothing to do with it's grade.
Yes it is a good point that I might respond bad to hormone type treatments.
"A person who is to receive endocrine therapy (e.g., tamoxifen or an aromatase inhibitor alone, or either in combination with ovarian suppression) should consult a Medical Oncologist and understand the risks and what may or may not be achievable."
Then that makes me wonder what Dr Esserman is doing I thought she was a breast surgeon. Maybe she sends people she treats to an oncologist.
"[Edit: we have cross-posted -- Remember "watching" means you are also depending on imaging to monitor disease while on endocrine therapy. Your disease is said to be largely occult (invisible) by MRI, which is unusual and would be a significant concern in my mind.]"
Not sure where the cross posting is.. I thought that meant posting on more than 1 thread.
I did not know what occult meant. I thought a lot of people had disease that MRI was not good at detecting. But yes if it is invisible as you say that means who knows if there are other areas they didn't see? (Even if it wasn't occult, tests don't always catch everything) This is another reason why I am concerned if I didn't just have an mx I might live to regret it. Dr Anderson said even if it was invasive that it is still highly curable they just have to "do more stuff". I knew what he meant.. I could have a mastectomy now and not have to do anything else for that breast. If I tried to save the breast then I would end up having to do radiation. (Actually he didn't really discuss radiation if I kept the breast because his recommendation was mx. Dr Clark said I could do a partial mx but if I did I would have to have radiation.
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When I said I knew what he meant... I know he was not referring to me trying to keep my breast.. we didn't discuss that. He just liked to use the phrase "do more stuff" in a certain tone of voice that to me meant stuff like radiation and chemo.
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I don't believe it's necessarily true that a mastectomy means you don't have to do anything else. There are lots of stories here about the cancer returning even with mastectomy.
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Hi Big4:
Re my comment about "watching", I was not referring to unknowns of diagnosis, but these are possible as you note.
I meant that a person who elects endocrine therapy in lieu of surgery for what is believed to be DCIS must be closely monitored by imaging in case of possible new or worsening disease (DCIS or invasive disease). The need for long-term monitoring is noted in the article you posted:
". . . But it's an option that will require lifelong vigilance. Anyone who chooses not to have surgery will have to be watched carefully and have routine mammograms and maybe even MRI scans and biopsies."
MRI is ordinarily very sensitive. Per NCCN guidelines for screening:
"The sensitivity of breast MRI at detecting breast cancer is higher than the sensitivity of mammography, although the specificity of the former procedure is lower, resulting in a higher rate of false-positive findings."
Regarding detection of DCIS by MRI, see also:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC428686...
"Up to 20% of DCIS remain mammographically occult due to the lack of calcifications and/or small tumour dimensions. Breast MRI has a high sensitivity in the diagnosis of invasive breast cancer, varying from 90% to 100%; the sensitivity for the diagnosis of DCIS is 77-96% (Nadrljanski et al., 2013). The sensitivity of mammography decreases with increasing nuclear grade, whereas that of MRI is improved. In a prospective study mammography missed nearly half of the high-grade lesions (48%) (Kuhl et al., 2007). The fact that MRI detects many DCIS lesions that go unnoticed on mammography implies that some cancers [invasive] can be prevented by timely intervention [for DCIS] on the basis of MRI finding [of DCIS]. The disadvantages of MRI are the limited availability and the high cost. For the time being, the primary role of MRI in DCIS is limited to the evaluation of lesion extension and thus the planning of breast-conserving surgery (BCS)."
If MRI were a recommended as part of a monitoring program (See question (5) above), does the fact that MRI is largely not seeing the current DCIS raise concerns about the potential efficacy of monitoring by MRI (if indicated) in your case? (See question (7) above).
BarredOwl
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Just to throw another unknown into the difficult decision making process. I too had very small breasts and 5 cm of DCIS. My BS warned me at the beginning that I would not be happy with a lx and in fact, it would be difficult to get clear margins even with a mx. The cancer was all very close to my chest wall. Hell, my nipple was close to my chest wall. Lol Sure enough, one focal point of positive margin, so I opted for radiation. A mx does not guarantee no further treatment. That was very traumatic for me at the time. But I have done very well and the radiation was quite easy for me. There are so many factors and no one of us ever seems to get away with a clear cut dx and treatment plan. So much to consider and such a difficult time. It is a blessing to have this forum to achieve so much info. I had Beesie at the time and she was my saviour. Read ALL of her postings.
BarredOwl seems to be her replacement. Thanks for all the research.
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Big4, I advocate that everyone do their homework, and determine what risk they can live with. However, hormone treatment isn't shown to be effective enough to rely on. It slows down proliferation rates, and maybe tumor progression for 3-6 months, but it won't stop cancer alone. My tumors were growing still, when I had surgery 6 months after starting Femara. It's a preventative - not a cure.
Since I had cancer in both breasts, I had a BMX. Don't regret it a bit. I have smaller breasts too and went straight to implant.
Have struggled with the rads issue, but that's me. I spoke with a Radiolgy nurse at American Cancer society when I couldn't handle all the differing opinions. They offer those resources.
The DCIS has to go, and as someone who abruptly had LCIS turn to high ki-67 ILC, I'd get rid of that too - via MX. It doesn't form a tumor, so the like hood of some being left behind with an LX are very high.
We bi-lateral girls also have a higher risk than others, so being overly conservative may be risky. And this is from a conservative girl who didn't have a very large DCIS, but only ILC. Mixed types have a worse prognosis. Neutral experts can be wonderful when we're confused or have Dr's with different opinions. I don't claim what I can offer is more than an opinion. However when I was told I was too small for a LX, there was no question I'd move forward with a double BMX
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Hi TB90:
Beesie's posts were invaluable to me as well. I think she is irreplaceable, though.
Big4:
Still thinking about you. I just reread your comment: "I was first seen by a resident? before Dr Anderson. I showed him my genetic results. (It is a teaching hospital.)"
As noted above, you need to provide complete medical information to your surgeon (and medical oncologist) by providing them with a complete copy of your test results, and requesting that the results be incorporated into your medical record. They may or may not be relevant to any specific question.
Even if the genetic test results were fully considered by Dr. Anderson (which is not clear from the above) in the context of your original treatment plan, you are now seeking advice on a new medical question.
When seeking medical advice, it can be beneficial to keep reminding your team of about the specifics of your case, which ensures that they are expressly considered as part of any advice you receive. This is because the surgeon does not have your entire medical records, pathology, and imaging results memorized.
In the interest of informed decision-making, it is best to seek reasoned explanations for the basis of any advice you receive, with reference to the features of your specific case. The explanation should make sense to you. I edited Question (2) to illustrate this:
(2) [EDIT: If so, why?] If not, why not?
Please explain [in either case] with reference to the results of my imaging and pathology to date (e.g., extent of disease, grade 3, solid, focal central necrosis, two abnormal appearing internal mammary chain lymph nodes), clinical presentation (e.g., personal and family history, pre-menopausal diagnosis, issues in both breasts, possible multi-focal disease on right, [EDIT: genetic test results]), and risk profile.
BarredOwl
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BTW it is B L G... it is my initials. I know it is hard to tell an i from an l sometimes.
Marijen "I don't believe it's necessarily true that a mastectomy means you don't have to do anything else. There are lots of stories here about the cancer returning even with mastectomy." If you were referring to my comment... you would have to hear it in context. I know he did not mean it like this. He meant if I didn't do an mx and let it go on and it got invasive then he would have to "do more stuff" than what he plans to do now. He certainly was not suggesting if you do an mx you can never get cancer again. I don't like how some drs act like hooray you don't have to have mammograms anymore! to me that is not something to be happy about.. now they won't bother to see if you get cancer in the remaining tissue.
BarredOwl I guess I don't remember what I said.. not really sure for the reason of your comment about the person has to be monitored when doing hormone type therapy. I know that they must be monitored. It is not just take the medicine and do nothing. About MRI thought I read it missed stuff maybe not. maybe I got it confused with something else. That is a great point if MRI is not seeing the disease then how could I be safe to just be monitored? (Maybe that was why I was thinking it was missing stuff but that would just mean with me not that it did it to others.) I will comment on your other post below at the end of this response. there's important info in my responses to others too
There is no news on what Dr Anderson thinks of what Dr Esserman said. I knew I wouldn't be home most of the day today so I didn't call. I will call on Monday. No further comments from Dr Esserman. Not sure if I mentioned.. she said Dr Anderson would be willing to have a conversation... not sure if she meant with me or with her. I think he will just say what he already said.
TB90 actually I am in the same situation too... my breasts are small with 6 cm dcis in one. Also it was close to the chest wall. The person doing the mammogram was not sure if she was getting back far enough. When I had the biopsy I asked if they were able to get back far enough. She (a different person) said that was a good question. Said yes they were because since you lie on your stomach to do the biopsy gravity helps them. I should mention this to Dr Anderson but I assume he already would know. Goes to what BarredOwl said about repeating pertinent info
Leslie13 First BS said I could do a double mastectomy sorry I can't remember all these abbreviations... but she said it was not necessary. The 2nd BS said he was not in favor of just automatically doing both breasts. He said an extensional biopsy needed to be done to make sure there was nothing else there. That is my concern about hormone type stuff... I don't want to hold off having an mx to see if it will work unless I know it has been proven in studies that this treatment approach is valid. To me it seems right now the medical people think it sounds good on paper but the studies are still ongoing. They will find out the answer or come up with a better solution but it will be too late for me to take advantage of it
BarredOwl "Even if the genetic test results were fully considered by Dr. Anderson (which is not clear from the above) in the context of your original treatment plan, you are now seeking advice on a new medical question." One thing I learned is.. for your own protection if they ask if a student can be involved.. say you only want it done if the main Dr stays there. There are some questions I can't remember who I asked. You have no idea if all the info you say gets told to the senior dr. Yes I agree about repeating the details of your case. They have lots of people they treat they don't have you memorized down to the last detail. My Mom's problem is she wants to chit chat with drs.. but then when I say she needs to remind him of stuff she says "I already told him that." So what? tell him again.. don't assume he remembers.
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