Mods, thank you so much!
sandpiper, I'm glad that the information here has been helpful to you. I'm a big believer in going in to the doctor armed with some good basic knowledge and all the questions you need to have answered so that you understand your diagnosis and can make educated decisions about your treatment plan. It's great if this thread has helped you get prepared for your appointments with your BS and MO. I hope all the news you get from them is good!
Thanks, Omeggo, for the kind words of encouragement. I agree with Beesie that this board is best when discussion includes solid information from varying viewpoints. Beesie has helped provide information to so many over the years and I applaud her perseverance. My primary goal here is to help newcomers acquire some of the vocabulary, find good sources of information, and figure out how to process all the new issues and questions thrown at them.
Here is another study I just received. It is hitting on what causes DCIS to become IDC. See what you think.
Infobabe, I just read through the article. The conclusion is that FRFG1 (fibroblast growth factor receptor 1) amplification may play a role in the progression of DCIS to IDC. They reached this conclusion through an analysis of DCIS and IDC breast cancer tissue samples, which showed that FGFR1 amplification was more frequent in the invasive components of tumors than in the corresponding DCIS components of those same tumors, combined with looking at work done on an "in vitro three-dimensional HC11 mouse mammary epithelial cell culture model expressing a drug-inducible FGFR1", which found that "iFGFR1 activation results in a gain of invasive properties and promotes the epithelial-mesenchymal transition". So this is interesting but clearly this is early stage work that is a long way from being either conclusive or actionable.
Early in the report, the authors point out that "Others have suggested that C-MYC amplification plays an important role in the transition, because they found amplification only in the invasive component. However, this finding was not confirmed in other studies." I guess the question now is whether this finding on the role of FGFR1 in the transition of DCIS to IDC can be confirmed in other studies.
One thing that I think is quite interesting is that HER2 was included in this work and there was no conclusion that HER2 amplification plays any role in the development of IDC from DCIS. Because HER2+ invasive cancers are considered to be so aggressive, one of the big unanswered questions about DCIS has been whether HER2+ status is also a sign of a more aggressive DCIS, i.e. DCIS that is more likely to become invasive. The studies I've seen have been all over the map on this - some suggest that HER2+ DCIS is more aggressive and others suggest that HER2+ DCIS is less aggressive. If I'm interpreting this study correctly, it's one more that falls on the side of saying that HER2 status is not a factor in the progression of DCIS.
That's my amateur analysis. I'd be really interested to hear what BLinthedesert thinks about this study and what it might mean.
My pathology samples were not tested for HER as it is not a standard test for DCIS. I think they should because we don't know if it will be a significant factor as this research moves along. It would be so easy to do when they are analysing the tissue and maybe unrecoverable in the future.
blocking FGFR1 is currently being investigated as a target for therapies for lung cancer - blocking this receptor has shown to slow growth of small cell lung cancer tumors. There has been other data suggesting that drugs targeting this protein also may be used with breast cancer, particularly ILC (link here). The reason that they also looked at HER2, is that this protein (FGFR1) has a very similar structure to HER2 (which is also a protein). Herceptin as a targeted therapy for HER2+ invasive disease has been very successful and they are always on the lookout for the next targeted therapy.
There was a study that was completed in November 2010 (at MD Anderson) that looked at Herceptin treatment in HER2+ DCIS. The results of whether or not recurrence was reduced have not been published - probably because this will take time to prospectively assess. However, some results, about molecular changes due to Herceptin have been published - and I am attaching the abstract below. HER2 is positive in about 40-60% of DCIS cases, more often in grade 2 and grade 3 tissue (and there is some evidence of HER2 positivity being associated with ER/PR negativity as well, but this has not really been well established)
Another new study showed that those people with IDC that had adjacent DCIS that was HER2+ had more aggressive IDC: http://www.ncbi.nlm.nih.gov/pubmed/21667238 ... I think they think that this could be because the DCIS is likely to more aggressive if it has HER2 receptors - which would again link HER positivity to DCIS being more likely to invade.
So, in the study that Infobabe posed, they are making a case for this new protein - that has some similar properties. Fibroblast growth factors have a role in cell migration, and they also are associated with kinase activity - which is another huge pharmaceutical target for new drugs ... pretty much all big company have drugs in the pipeline that block kinase activity -- so if DCIS (which is a huge part of the breast cancer market) could be another market for these drugs it would be huge.
____abstract of Herceptin trial from:
Kuerer, H. M., Buzdar, A. U., Mittendorf, E. A., Esteva, F. J., Lucci, A., Vence, L. M., Radvanyi, L., Meric-Bernstam, F., Hunt, K. K. and Symmans, W. F. (2011), Biologic and immunologic effects of preoperative trastuzumab for ductal carcinoma in situ of the breast. Cancer, 117: 39–47. doi: 10.1002/cncr.25399
Through this study, the authors sought to investigate the biologic and immunologic effects of preoperative trastuzumab in patients with ductal carcinoma in situ (DCIS) of the breast.
Patients with DCIS were enrolled in this open-label phase 2 trial and tested for HER2. Trastuzumab was given by intravenous infusion (8 mg/kg). The patients then had surgery 14 to 28 days after treatment. Tissue and peripheral blood samples were obtained before therapy and at the time of surgery to examine residual disease and immunologic response.
Median age of the 69 enrolled patients was 53 years, mean mammographic size of the DCIS lesions was 5.2 ± 1.2 cm, and 24 patients (35%) were found to have HER2 overexpression/amplification (12 received trastuzumab and 12 untreated patients provided tissue for blinded, controlled biomarker analyses). No overt histologic evidence of response was noted. No significant change in mean pretherapy staining for Ki-67 (44.3 ± 3.4%) and cleaved caspase-3 (2.6 ± 0.8%) was noted when surgical specimens from drug-treated patient samples were compared with those not treated. Trastuzumab significantly augmented antibody-dependent cell mediated cytotoxicity (ADCC) in 100% of patients; this was demonstrated to be mediated through CD56+ degranulating natural killer cells (P < .01). One patient developed a significant anti-HER2 humoral CD4 T-cell response.
Single-dose monotherapy with trastuzumab for patients with HER2-positive DCIS does not result in significant, clinically overt, histologic, antiproliferative, or apoptotic changes, but does result in the ability to mount ADCC mediated through natural killer cells and may also induce T-cell dependent humoral immunity. Further studies of trastuzumab for DCIS appear warranted. Cancer 2011. © 2010 American Cancer Society.
MY breast surgeon did the hormone test as for her, she considered it standard of care even for DCIS
helped her and me to know how to proceed, can not say I understood that much at the time, only after we got into all
Going to have my consultation Sept. 14th with Oncologist.
Would someone be so kind and send me a list of qestions to ask him.
I have a copy of the pathology report. Margins 0.7CM or 7mm.. I believe that is wide?
DCIS stage 0 lymphnodes Negative....Tumor was 10mmx8mm..Etc.
I am 61yrs old..
Surgeon pleased with all results and says I am all clear..Im healing well after three weeks ago from surgery.
Thank you my Friends.
Best wishes to you All..
Hi Barbi, I am glad you are healing well. I assume you had a MX? one side? I am also assuming you are ER+ (since you are being referred to a MO)?
If they answers to the above are yes, then the main questions for a MO are: 1) Yes/No on hormonal therapy - if yes, tamoxifin or an AI (still off-label but widely perscribed for post-menopausal women, 2) Follow-up screening, are you going to have mammograms every 6months or yearly, if you have a breast left and/or MRI ...
Best of luck to you on your continued recovery.
Thank you for answering..
Forgive me with the abbreviations but what is MX?...I had a lumpectomy on left side.
You are saying yest the Margins are wide I believe..I dont know the differences between cm mm's 1cm 1mm etc.
Can you explain this to me..?
Have a great weekend and Best Wishes and Good Health..
MX is a mastectomy. 1cm = 10 mm.
I haven't discussed much about margins in this thread. In writing my thread my intent was just to provide general information about DCIS. There are however some other discussion threads that have more specific information about margins and discuss situations that are quite similar to yours. You may find those threads to be more helpful as you prepare for your appointment with the medical oncologist. Here's a link to one of those threads:
Quite a few women recently on this board have had diagnoses similar to yours and I'm sure you will get a lot of good advice and suggestions from them. Good luck with your appointment!
Ok 1cm = 10mm so 0.7cm would be good? Im assuming so..!!! Im hoping soooo...lol
I know there are alot of women that dont understand like me and you are being so helpful..
Infobabe I thank you so much...
You girls are fantastic...So nice for you all to take the time for each other.
I will always be on here to help anyone with my past experiences too..
Im learning alot thanks to my Angels
This has been most helpful !!
July 31st 2012 went for my Lumpectomy..Good shape all margins cleared.
.DCIS stage0 Intermediate Grade. They tell me Im in good shape. So I see the Oncologist and he offers me options for Rads and Tx.
No Way I say. If IBC that is a different story.I will keep open mind about the TX.. Dont waint to take it because of SE...I will discuss more
details on my next appt with Oncologist..I told him to let me seriously think about it..
Anyone on here who had what I had and opted out on both get in touch with me please.Let me know how long its been for you.
I wish all so much luck..Personal decisions and go with your inner gut and discuss with family members also...
Email is [email protected] I dont get alerts when new msgs come on here..
Barbi, you may want to start a separate thread with your questions so that more people will see them and respond. I wrote this thread with the intent of it being more of a "general information" thread. Because of that, once someone reads this thread one time, they don't often come back because it's not being updated regularly.
I'd also suggest that you may want to remove your email address from your post. This is a public forum - anyone on the internet can read anything you post - and it's really not safe to post your private email address.
Edited to add: Here are a couple of threads in the DCIS forum where you may find information that's more relevant to your situation. You might find the answers you are looking for in these threads, or you might want to repost your situation and questions there:
Topic: Lumpectomy with no further treatment
Topic: DCIS lumpectomy without radiation?
Thank You Beesie.
Great and helpful posts as usual, Beesie, with far more information than I ever gathered from all the medical sources since my diagnosis and surgery. I'm going to pull out my pathology report to get a better overall understanding of my situation - even after all this time. Thank you.
interesting new paper on using Herceptin for DCIS, particularly er-negative, but suggestive of er-positive as well. They reference the ongoing phase III trial as well.
Thank you for the information. " 80% - 90% of IDC is believed to have evolved from DCIS...". BELIEVED? Is there any PROOF? G
yes ... there is proof, both biologically (many IDC areas have the same cellular characteristics - including grade and ER/PR status, and chromosomal patterns - as DCIS in the same breast), and using observational studies. There have been many studies that show that high grade, multifocal, DCIS is at very very high risk of recurrence after surgery alone - and for all women who do have a recurrence 50% of those recurrences will be invasive disease.
In terms of just general, "do I need to be treated at all" - it is very difficult to find studies where DCIS was left untreated (most women do indeed want to reduce any chance of invasive cancer). There is however a small group of 28 women who had an incorrect diagnosis - they were diagnosed with benign disease, but later (many years later) their slides were reviewed and they actually had low grade DCIS. In these women - even though they had the most favorable prognosis - small, low grade, DCIS - 39% of them ended up with invasive disease within 30 years of their misdiagnosis. These papers are linked below. Of note, 5/11 who developed invasive cancer died of metastatic disease. There are two main points of these papers - these were the lowest risk patients available, and even then without any treatment at all 39% of them ended up with invasive disease and 5 died of this invasive disease - risk of invasive disease is not really completely described only by grade; obviously higher grade disease would likely show the same, if not higher, rates, and sooner (since the cancer cells are growing more quickly). The second point to note is that this does not mean that ALL low grade DCIS need lumpectomy + radiation + hormonal therapy, but, unfortunately, it is not clear which patients are best treated with lumpectomy with adequate margins -- so many women could be possibly overtreated -- it really depends on how risk adverse you are and how much risk you are willing to live with. However, to answer your question "believed??" - yes ... DCIS will, for many women, evolve to IDC - regardless of grade.
I'll say "Yes!" to everything BLinthedesert said.
FYI, the reason that I said that "80% - 90% of IDC is believed to have evolved from DCIS..." is because medical science doesn't know for sure what the percent actually is. The fact that most IDC evolves from DCIS isn't in question. What's not certain however is the percentage of IDC that starts out as DCIS.
In the development of ductal cancer, in most cases the cancer cells start off confined to the milk ducts; this is DCIS. These cancer cells are almost fully developed; they look and act like cancer cells but they lack the ability to break through the wall of the milk duct. However at some point these cells undergo one final biological change that allows them to break through the milk duct and thrive in open breast tissue. At that point, the cancer cell that used to DCIS is now IDC. It's the same cell, but it's evolved and has broken through the milk duct.
Most (here again, the percentage is unclear) cases of IDC include a DCIS component. This is where the really big mystery comes in. Sometimes someone will be found to have a mass that is 99% IDC but only 1% DCIS. Other times there is more DCIS - maybe about 30% of the tumor - but still the majority of the tumor (70% in this example) is IDC. Then you have situations that are the opposite of this, where a small but still signficant percentage of the tumor is IDC and the majority of the tumor is DCIS. And then there are cases like mine, where the tumor is only about 1% IDC and 99% DCIS. Why do some cancers convert almost immediately from DCIS to IDC and then develop only as IDC? Why do others develop both as IDC and DCIS? And why do some develop mostly as DCIS and then eventually break through the duct? I don't believe that there is any understanding yet on why the DCIS-to-IDC evolution of cancer differs so much from one case to the next. If anyone has read anything that attempts to explain this, I'd love to know about it.
Hi Beesie, I am cutting and pasting from the other thread here ... but here are two recent papers that cover this. Basically, the latest technology allow us to actually genotype (write the entire sequence of genetic information) tumor tissue. So, most of the latest literature are discussing different "genotypes" of cancer. What is exciting about this is that we are seeing overlaps in subtypes of cancer that are similar across organ systems (e.g., stomach cancer can overexpress HER2 just like breast cancer can) - which means that targeted therapy might be possible (e.g., Herceptin for HER2 cancers), regardless of where your cancer is located. While this is exciting -- it is brand new, and the technology itself is not thoroughly validated yet.
DCIS is called a "non-obligate" precursor for IDC, what this means is that it generally arises from DCIS, but it can also occur without DCIS. This paper actually shows that while there are many cases where DCIS and IDC samples in the same person share the same genetic information, "recent molecular profiling data has strengthened earlier observations suggesting that many high grade cancers do not develop via the ADH-low grade DCIS pathway" (show they quote this paper).
I have just found this site and I would like to say thank you to Beesie, BLinthedese, Infobabe and others who have contributed so much of their time and research into DCIS.
Have taken onboard all this information and will ask about HER2 and the oncotype tests as I have not had these done. What surprises me is that so many DCIS cases have close chest wall margins. I just assumed that the DCIS would be mostly around and behind the nipple area. No so! Certainly changes my treatment plan and makes it so difficult. Thanks again for the great contribution.
I went to a BC conference last week, and listened to a researcher about the topic "recurrence risk after diagnosis of DCIS". Because DCIS is a relatively new diagnosis, there's not a lot of information about long term risk. He has been studying women who were diagnosed with DCIS in the last 15 years. Any way, for everyone who hasDCIS, the chance of a recurrent breast cancer diagnosis is approx 5% after 5 years, and increasing by 5% every 5 years. The highest rates of recurrence are those with lumpectomy only, without rads, at about 15%. Next are the lumpectomy with rads, about 10%' then UMX with or without rads about 8%' and finally BMX with virtually 0%. It will be interesting to see what the years bring, ans how they will deal with DCIS in the future.
It sounds as though the researcher you heard was talking about the specific results of his study. Those results are the average of all the women in his study, and all their different diagnoses and surgical results. We have to be careful to not suggest that those results apply to everyone, or any one specific woman, who's been diagnosed with DCIS.
Recurrence risk after surgery for DCIS is dependent on many factors. Size of the area of DCIS. Single focus or multi-focal. Grade of the DCIS. Presence, or not, of comedo necrosis. Size of the surgical margins. Age of the patient.
Someone who has a lumpectomy with good surgical margins, has rads and who had a small, single focus of low grade DCIS is not likely to have a recurrence risk that's as high as 10%.
On the other hand, someone who's had a lumpectomy with acceptable but narrow margins, has rads and who had a large, multi-focal high grade DCIS, is likely have a recurrence risk that's quite a bit higher than 10%.
So 10% may be the average, but no one should assume that their recurrence risk is 10% just because they had a lumpectomy with rads. You really have to talk to your doctors to understand your risk, based on your diagnosis and pathology and other risk factors.
We also have to be careful to not mix together recurrence with a new primary. They are two different things. DCIS cannot recur in the other breast, so the recurrence rate will be the same whether someone has a UMX or a BMX. I've read dozens of studies on recurrences rates after a MX for DCIS. Unless there are very close or negative margins, most studies are consistent in putting the recurrence risk after a MX for DCIS at 1% - 2%.
Women who have a UMX of course still have one breast, and therefore they can develop a new primary breast cancer in the other breast. This is not the same as a recurrence. The risk to develop a new primary varies considerably depending on personal health and family health history, and the age of the patient. A younger woman with a strong family history will face a much higher risk that she might develop a new primary BC than an older woman with no family history.
With a BMX, although risk of recurrence and/or a new primary is brought down to very low levels, no one should ever believe that the risk is 0% or close to 0%. It doesn't take a lot of reading of this board to find women who've had a BMX and who've subsequently developed either a recurrence or a new primary. The risk is low - only about 1% - 2% - but that means out of every 100 women who have a BMX after a diagnosis of DCIS, 1 or 2 will develop BC again in the future. Anyone who has a BMX should be aware of that risk and should ensure that she continues to be screened.
I don't have time now but I'd be happy to dig out some studies that show how much recurrence rates can vary after a lumpectomy for DCIS, with or without rads, and other studies that show that the recurrence rate after a BMX is generally in the range of 1% to 2%.
Edited for typos only.
DCIS is not a relatively new diagnosis; it has been diagnosed for decades although it is found more often than it used to be.
The problem with getting good enough long term data is that changes in diagnosis and treatment occur so frequently that by the time patients are 10, 15, or more years out their data is not measuring current diagnostic or treatment methods. Yet the risk of recurrence, while low, continues for decades. Unlike the situation for some more aggressive cancers that most often recur early if they are going to recur, 5 year follow-up data for DCIS is almost useless and often very misleading. We need 10+ year data to get a reasonable picture of the recurrence risk but many studies never report the results beyond 5 years.
The specific numbers you report seem rather low to be a summary of the best available data, but they may be results of a particular study. We would need to know more about the study to be able to apply the information to particular cases.
I am really glad to find this post. I have been posting some stuff about how horrible radiation has been on this site but have always wanted to know more about DCIS. I was diagnosed wit DCIS stage 0 grade 2 in July. I am PR/ER negative. I was really considering not doing radiation because I could not grasp why this tiny teenie cancer was such a big deal. Now I am getting it about the non invasive part.
Hi Bunkie, I am sorry you having problems with radiation. I did not find it to be a picnic, but overall it wasn't that bad for me and 4 months out have absolutely no ill effects.
We (you and I) have very similar diagnoses!