A laypersons guide to DCIS
Comments
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Thank you, Beesie, for this thread. Your original post is a wealth of information for newly diagnosed "DCIS'ers" and should be required reading. Would it be all right for me to point others here from my future blog(s) on this topic?
Blessings,
Kay
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Kay, you're welcome! And yes, you can certainly direct people here.... both to my thread but more importantly, to the BC.org site, with all the information that they provide.
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Thanks, Beesie. Here's a blog - the link is on the blog roll, upper right. Many will benefit, for sure. Please help with errors/omissions.
Thanks again!
Also, in case anyone is interested, the last few entries of my personal blog chronicle my DCIS story. Hope it helps someone.
Grace & peace,
K
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FYI, I've edited the main post to add a paragraph discussing the option to have your sentinel node(s) identified and marked prior to a MX, but not removed. This allows for the removal of those nodes in a separate operation after the fact, if any invasive cancer is found in the final pathology. If the final pathology shows only DCIS, then this procedure allows the patient to avoid an unnecessary Sentinel Node Biopsy (and the risk of lymphedema that comes along with any node removal).
This procedure was developed by the Pink Lotus Breast Center, as a way to allow Angelina Jolie to skip having an SNB at the time of her prophylactic mastectomies. Although the procedure was developed specifically for situations where the MX surgery is prophylactic, the procedure may be an option for patients who are having a MX after a diagnosis of low-risk DCIS, i.e. situations where it's quite unlikely that any invasive cancer will be found in the final pathology.
This is a new procedure and therefore there may not be many doctors willing to do it, but it's worth a discussion with your breast surgeon if you are having an MX or BMX and would like to avoid unnecessary lymph node removal.
Prophylactic Breast Dye Injection (PBDI): An Innovative Idea from the Pink Lotus Breast Center0 -
Beesie--thanks for posting the link for the PBDI. It's great info to have if I ever decide to go the route of PBMs for my LCIS. My mom developed lymphedema about 6 years after her treatment for ILC (radiation,tamoxifen, lumpectomy and ALND), so it is good to know about something that could actually help decrease the risk of LE (but not removing the nodes unecessarily).
Anne0 -
Your posts are always very helpful, Beesie!
Just curious: Is there ER-/PR- DCIS? If so, is it common? If a person has ER-/PR- DCIS (if it exists) would these theoretically be potentially more aggressive, since (as I understand it) antihormonals wouldn't control the present ER-/PR- DCIS? Would a ER-/PR- DCIS person ever take tamoxifen just in order to prevent a subsequent diagnosis of ER+ +/- PR+ DCIS?
Do they know if DCIS can change its hormonal sensitivity (for example ER+/PR+ DCIS turn into ER-/PR+ DCIS)? Or, is this a dumb question because if they knew an area was DCIS of whatever type, they'd try to remove it?0 -
leaf, yes there is such a thing as ER-/PR- DCIS.
Is ER-/PR- DCIS more aggressive than ER+/PR+ DCIS? That's hard to say. With invasive cancer, the greatest concern related to having a more aggressive cancer such as a TN cancer or an HER2+ cancer is that there is a greater risk of mets. For that reason, chemo is more likely to be given to women with TN and HER2+ invasive cancers, even very small cancers. But with DCIS, there is no risk of mets. So if an ER-/PR- cancer is more aggressive, the risk is different - it's just that there might be a greater risk of local recurrence, and if there is a local recurrence, perhaps a greater risk that the recurrence might be invasive. While hormone therapy is not available to reduce this risk for women who are ER-/PR-, this risk can be reduced by ensuring the widest possible margins and with rads (sometimes even after a MX).
This 2011 review of literature looked at the significance of biological markers in DCIS, and how they might impact recurrence risk: Biological Markers in DCIS and Risk of Breast Recurrence: A Systematic Review
They did not specifically look at ER and PR together, but evaluated any studies where the impact of either ER or PR status was examined. Some excerpts from the article:- Among the 36 studies in our comprehensive review that examined ER expression rate in DCIS, the mean ER expression rate was 68.7% (range: 49-96.6%)
- We identified 16 studies (2,470 total patients) that evaluated the relationship between ER expression and risk of local recurrence. Four of these studies revealed an association between ER-negative DCIS and risk of local recurrence.
- Specific to one of these 4 studies, In patients who developed a subsequent invasive tumor, the investigators did not find ER to be a predictor of recurrence either individually or in combination with other markers in a phenotype
- Among the 28 studies in our review that examined PR expression rate in DCIS, the mean PR expression rate was 59.6% (range: 40-83.3%)
- A direct positive relationship was observed between PR expression and ER expression
- Thirteen studies (2,051 total patients) in our review evaluated the relationship between PR expression and risk of recurrence, and only two of these studies revealed a significant correlation.
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So, no definitive conclusions, but it appears that many more studies found that ER- and PR- status did not have an impact on recurrence rates vs. those that did.
As for Tamoxifen, this is an older article, but with some interesting findings: Ductal Carcinoma In Situ: What Do We Know Now?
In NSABP B-24, DCIS patients were given Tamoxifen or given a placebo without benefit of ER testing. The results found that "tamoxifen was clearly associated with reduction of events compared with placebo in the ER-positive subgroup (hazard ratio = 0.41; P = .0002). By contrast, the benefits in the ER-negative subset were more modest, and not statistically significant (hazard ratio 0.80, P value 0.51). Because there were relatively few events overall, and because most DCIS patients were ER positive, there were few events in the ER-negative groups, which makes statistical analysis more difficult."
Those limited results would suggest that there isn't much benefit to giving women with ER- DCIS Tamoxifen. And generally, Tamoxifen is offered to women who have ER+ DCIS, not those with ER- DCIS.
Can DCIS change hormone status? I don't know. I suspect that there haven't been enough cases where this could be measured because, as you say, DCIS is usually removed. And if DCIS were to develop again in about the same area, and if the 2nd diagnosis of DCIS has a different hormone status, the assumption would probably be made that it's a new primary, vs. doing whatever testing is necessary to determine whether it's actually all part of the same cancer.
What I do know is that ER expression may change as DCIS progresses to become IDC: Expression of ER protein from DCIS to IDC in ductal breast cancer
We studied the alterations in the expression of estrogen receptor alpha (ER) in the progression from ductal carcinoma in situ (DCIS) to invasive ductal carcinomas (IDC).
Methods The mastectomy specimens of 120 cases containing both DCIS and IDC were examined. The expression of ER proteins were examined by immunohistochemistry. The difference of the expression of ER proteins between DCIS and IDC were compared.
ResultsThere were 58.33% of the cases with DCIS expressing ER proteins, and 40.00% of the cases IDC expressing ER proteins. There was a significant decrease of ER expression in IDC compared to DCIS (χ2 = 4.034, P = 0.045).
Conclusion These findings substantiate the notion that breast cancer progression is often associated with alterations in expressions of ER. The underlying mechanisms of these alterations need further investigation.
That's one I find to be really interesting!0 -
Re SLN mapping. I asked my surgeon about it, and she wasn't keen on the idea, though she'd do it if I wanted. I have microinvasions, so we decided against it anyways, but she said she'd be hesitant even to do it with pure DCIS. IIRC, she said that by the time final pathology comes back, the blue dye may have spread beyond the sentinel nodes, in which case she wouldn't know which nodes to remove for a minimal dissection. We talked about mapping the nodes and placing clips by them during surgery, so that the nodes could be found later, but she said there's a risk of the clips migrating or, if placed around the node to keep it in place, might have the same effect as removing the node. Still, had it been pure DCIS or a prophylactic mastectomy, I would have gone for one of those options. As it is, she's going to be as careful and minimally disruptive as possible and take especial care around the lymphatic channels.
Besides, you can develop lymphedema with just a simple mastectomy and no lymph nodes taken....0 -
Thanks so much Beesie! If I ever end up getting DCIS, you know where I'll go. Thanks again for all your hard work, and on behalf of all the people you have helped directly and indirectly.0 -
leaf, thank you! The info that I gather for DCIS is the same that you do for LCIS so I will offer back the same thanks to you for everything you do for this board. Having you and Anne and a handful of others (Melissa and Marie come to mind immediately) around to offer calming advice, and to show women who are high risk that being high risk is a manageable condition - and doesn't automatically mean that you will be diagnosed with breast cancer within 6 months or even many years (or hopefully ever) - is invaluable.
Undercat, thanks for the info from your surgeon. I had a microinvasion that was discovered during my excisional biopsy so when I talked about node removal with my surgeon, he made it clear that there was no option about it. He indicated that there is about a 10% risk of nodal involvement even with an invasive cancer as small as a microinvasion; since then I've read a few studies that seem to confirm this. Of course back in my day - I was diagnosed 8 years ago - the current option of SLN mapping but not removing the nodes wasn't available, however I doubt that even today my surgeon would let me off the hook on having a SNB.
With this "SLN map and hold" technique being such a new procedure, I'm not surprised that your surgeon is hesitant about it and it's interesting to hear the reasons why. I recall reading an article just after the information on this procedure came out and it suggested that the pathology on the breast tissue would need to be done pretty quickly so that if any invasive cancer was found and an SNB did turn out to be necessary, it could be done within a couple of days of the first operation. Hopefully over time, and as more doctors try the procedure, they will find a better way to mark the nodes so that this does become a viable option for anyone with DCIS or anyone having a prophylactic MX.0 -
Beesie, my surgeon said she and her colleagues (she's at Mayo in Rochester) had tried SLN map and hold or map and mark in the past, to apparently middling results. She didn't seem at all enthused by the idea, at least in my case (and tbh, I mostly brought it up to be talked into doing SLNB, because microinvasions). She did say it could definitely be an option and something she'd be willing to do for women undergoing prophylactic mastectomies, since the other method for finding SLN when occult cancer is discovered is injecting tracers in the general area and hoping for the best.
Anyways, I can't imagine there's a large number of people it's been tried on, so hopefully some studies will be done. Certainly worth considering for women having mastectomies for reasons other than known invasive cancer.0 -
Wow, Beesie. Thank you for all that great information. No where was I able to find such complete answers to all my questions. I have had several friends tell me that DCIS is not really cancer (courtesy of a recent New York Times article), and talking that way upsets me. I would not have had a mastectomy if I didn't have real cancer (granted a significant family history and other risk factors also weighed in heavily). I consider myself not "lucky," but "more fortunate than many," in terms of my diagnosis. I value your definition of DCIS as pre-invasive breast cancer. DCIS,Grade 2 with comedonecrosis, also tells me that my risk was high for it becoming invasive.
Reading your information has now put into proper perspective my diagnosis, and treatment to follow, and helps me to form questions to ask for my upcoming Oncologist appointment. I know I will be encouraged toward preventive hormone therapy, and you can be sure I will ask for my real risk data. I am grateful.
Thank you,
Ann
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Ann, thank you! I'm glad that the information I've provided is helpful. And I really appreciate your comment about how this has helped you form questions for your discussions with your Oncologist. That's exactly what I hope my posts here achieve.
Personally I think that's how the best decisions are made - not by a doctor alone who thinks that he or she knows what's best for the patient, and not by a patient insisting on the tests and treatments that she wants or doesn't want - but by educated and informed patients who understand their diagnosis and their treatment options, know the questions they want to ask, and who work together with their doctors to make the best and most appropriate decisions for their treatment.
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I had DCIS grade 2, er/pr positive....Im guessing the reason i dont have oncotype score on my pathology report from May 2011 is because the DCIS test was so new then? Is there anyway to find out what my oncotype score is now three yrs later? Im assuming that the answer would be no as the slides are long gone? I also dont have any info on my report about HER2...would that be for the same reason?
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Hi Bluewillows, you would know if an oncotype testing was done, because it has to be separately approved by the insurance company. It doesn't appear on the pathology report. It is generally ordered later. The only reason for doing an oncotype test for someone with DCIS is to determine if the genetic components of the pathology suggest that the risk is low enough to forgo radiation. Those with grade 1 pathology or certain genetic features might be able to forego radiation, but once you get into grade 2 and certainly grade 3 pathology, the belief is that radiation is necessary. You already had radiation, so the oncotype test for DCIS patients is now irrelevant for you. In those with invasive breast cancer, the oncotype test is done to help determine if chemotherapy is likely to be necessary or not. This does not apply to you.
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bluewillowskys,
Ditto to everything ballet12 said about the Oncotype test. You've already had rads so the DCIS Oncotype isn't relevant to you.
As for HER2 status, let me copy over here the paragraph I have included in my introductory post in this thread about HER2 status for DCIS:
- At this time, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS.While
HER2+ invasive breast cancer is known to be very aggressive, there is
little understanding of what HER2+ status means for those with DCIS.
Several small studies have been undertaken to determine how HER2+ DCIS
differs from HER2- DCIS; the results of some of the studies have shown
that HER2+ DCIS might be more aggressive but the results of other
studies have shown the opposite. So there's no clear answer yet. There
also are no special/different treatments for those who have HER2+ DCIS,
although several clinical trials currently underway. What is known is that a large percentage of DCIS is HER2+ (a much higher percentage than for IDC)
which may suggest that as DCIS evolves to become invasive, in some
cases HER2 overexpression might decrease, with the cancer changing from
being HER2+ (as DCIS) to HER2- (as IDC). HER2+ DCIS is an evolving
area, so stay tuned. But for now, don't worry if your DCIS wasn't
tested for HER2 status - some doctors/hospitals do this testing, others
don't.So here again the fact that you don't have your HER2 status is nothing to be concerned about. HER2 status doesn't change anything for DCIS (at least based on current understanding) and lots of women with DCIS never find out if their DCIS is HER2+ or HER2-.
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Bumping to the top of the list, since the pinning function is not currently working. (Normally this thread is pinned to the top of the DCIS section.)
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Beesie and others, Thank you sooo much for this thread. I am beginning to better understand DCIS. I have a couple of questions if you wouldn't mind elaborating on.
1. If someone had a hysterectomy with both ovaries removed several years ago, would any hormone therapy be considered or would it not be necessary since ovaries were removed?
2. Any idea how many people choose mastectomy or even bilateral mastectomy with DCIS diagnosis? What do most women choose and why?
You answered one question I had about whether or not you could avoid radiation by having mastectomy already in an earlier post. Thanks!. I always said if I ever faced this situation I would elect a bilateral mastectomy. Funny (but, not really) how when you are actually faced with the REALITY of a diagnosis, it isn't always so clear!
3. Last question (I think). I understand that steriotactic biopsy doesn't give you all the information to make an informed decision, that happens when the area is removed with surgical procedure and margins are determined. Right? So, can you decide after the biopsy if you want just lumpectomy, radiation or mastectomy when you have more information? Is it better to make that decision after surgery or do you need to decide that before?
Again, thank you for taking the time to help those of us who just beginning this process. You could have decided to put this part of your life behind you, but yet, you look back, remember and reach out to us. Thank you from the bottom of my heart!
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Hi Renee, I can help with question 3, but not 1 and 2. The only thing I can say about question 1 is that women still produce some estrogen (mainly from fat tissue), even after the ovaries are removed, and women whose ovaries are removed as part of treatment for breast cancer (to reduce the amount of circulating estrogen), still get hormonal therapy if estrogen positive. The oophorectomy is certainly not a procedure that is recommended for DCIS, but there are other circumstances with invasive breast cancer, where it is done, and I believe that individuals in those situations still receive hormonal treatment. About question 3, you raise an interesting point. You really don't have all of the information after a stereotactic biopsy, other than the fact that DCIS is diagnosed, and whether that tissue is ER/PR positive or negative, the grade of the DCIS in that particular sample, as well as some estimate of the extent of the DCIS (which can be relatively accurate or an under/overestimate). Sometimes, MRI's are done after the biopsy to help determine the extent of DCIS, so that can yield more information. In some instances the stereotactic biopsy can tell if there are areas of microinvasion, but many times, a larger sample is needed for that. So, often women make their decision of lx vs. mx based on estimates of the size of the area of pathology, and/or based on a personal decision based on other factors--including all those cited by Beesie (whether they want radiation, fear of recurrence, concerns about frequent screenings/monitoring, family history, concerns about cosmetic defects with lumpectomy, etc. etc.) You can always have a lumpectomy first; gather more information, and then make a decision as to whether you want to proceed with mastectomy, with the additional information you have. Obviously, you can't go in the reverse direction.
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Dear beesie,
I have read your post on DCIS and it's awesome but I just have one concern and that is that here in Australia the staging for bc is different to what you describe in your post. We don't have a 0 stage bc. I shall now copy a section of the staging manual that was given to me by my BS which has also been compiled by the Cancer council of Australia.
Staging breast cancer
Stages of breast cancer are numbered from 1 to IV. Early breast cancer may be called stage IA, stage IIA and stage IIB(early).
Stage I- The tumour is small, less than 2cm in diameter, and has not spread to the lymph nodes.
Stage IIA-The tumour is less than 2cm and has spread to the lymph nodes or it is larger (2-5 cm) and has not spread to the lymph nodes.
Stage IIB(early)-the tumour is between 2-5 cm and has not spread to the lymph nodes.
Stages IIB(advanced), Stage III and stage IV refer to advanced breast cancer. for more information about the se stages call the Helpline or visit www.nbocc.org.au
The reason why I'm posting this is because when I was first diagnosed in 2011, I was very confused as to wether DCIS was stage 0 or stage 1.
when I looked up information online I would always get very frustrated because it didn't seem to make sense according to what my BS had told me and I needed to have faith in my BS. So I thought that I would clarify this with you Beesie so that if others like me come here to this forum that they may realise that perhaps the staging varies from country to country....but I cannot confirm this yet. What is your opinion?
Also note that I was diagnosed with an early stage 8mm DCIS...low grade. It was pure DCIS and I was told it was very slow growing....now I'm not here to talk about my personal diagnosis as such but just saying this so you know my DCIS fits perfectly into the 0 stage diagnosis but here in Australia it is called stage I.
Thanks so much beesie:)
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- Home
- > Affected by Cancer
- > Cancer types
- > Breast cancer
- > Diagnosis
- > Stages of breast cancer
Stages of breast cancer are numbered from 0 to IV:
Stage 0 refers to ‘pre-invasive’ breast cancer such as ductal carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS)
Stage I, Stage IIA and Stage IIB (early) refer to early breast cancer
Stage IIB (advanced), Stage IIIA, Stage IIIB, Stage IIIC and Stage IV
refer to advanced breast cancer (locally advanced breast cancer or
secondary breast cancer).
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A more direct link to the same webpage: http://canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/diagnosis/stages-breast-cancer
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thanks for all this DCIS info. very helpful! I am on information overload and have more page fulls of questions for my BS and OR for my post op on Wed!!! prelim is rad for 5.5 weeks, but have no idea when this starts after Lumpx and SNB surgery.???? Also returning to work Monday and we'll see how my week goes. My job is heavy workload and pretty high stress but my co-workers and boss are trying to minimize that over the next months, but we'll see how that really pans out. I am lucky my sick leave bank is 1,200 hrs after 25 yr at my job. But not how I envisioned ever using it. well keep me in your thoughts and prayers for my results this week....scared, anxious and unknowing!!
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hi there
Last august I had a nipple sparing mastectomy after presenting with bloody nipple discharge. After mastectomy it showed 10 cm grade 2 but did a sliver behind nipple and it was all clear so I got to keep my nipple. A couple of weeks ago I had more bloody nipple discharge from the same nipple. My surgeon and I both decided to have the nipple and areola removed. My surgeons secretary phoned me to call me back into see the surgeon, but I was on holidays though taking it very easy. I asked her did I get all clear and she was reluctant to talk over the phone. She then asked a breast care nurse who told her to tell me that it wasn't all clear but I'd need no further surgery and closer check ups and a chat with the surgeon when I return from my hols. I am so nervous about this appointment and was wondering what could be the possibilities for me. Not sure what I should be expecting to hear.
If you could help it would be great as I am the type of person who needs to know all the possible outcomes
Looking forward to your reply
Thanks
Mrs Riley
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MrsRiley, we can imagine that this is very difficult to hear from afar. It is very positive though that they said no additional surgery. How long until you return from holidays?
We are here for you!
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Hi mrsriley, I am sorry to hear you've been left dangling like this, I would want to know what it meant too. I'm sorry that I don't have any definitive answers, as to what it means, but I would be pleased to hear that it doesn't require more surgery.
As hard as it is, try to not read too much into it, there are many things this could be and worrying about all the possibilities, will just wear you out. You don't say when the appointment is, but I am assuming not too far away. I wish you all the best and please let us know how you get on.
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hi there
I have just returned from hold and my surgeon is now on his hold for 3 weeks. I phoned my go as she gets a report. More Davis this time 6 mm they only got 1 mm clear margins and would prefer 3 mm clear margins. They are going to review me every 6 months instead of every 12 months. Bit confused as thought after having mastectomy and nipple and arerola removed there would be nothing else left. Feel like a ticking time bomb. Having two diagnosis within a year is crap but will just have to grin and bear it.
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meant Dcis not Davis not good with iphone
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mrsriley,
This is a general information thread about DCIS. It's not visited by many women after they've had a chance to read it through at the time of their initial diagnosis so you are not likely to get many comments about your situation. The intent of the thread is to keep it focused on general issues that are relevant to anyone diagnosed with DCIS.
If you have questions about your own specific situation, you would be better served by starting your own thread. You'll get more attention that way.
To start your own thread, click into the DCIS Forum (as you did to access this thread) and then click on the "Start a New Topic" button near the top of the page.
You may also be interested in this thread where the issue of close margins after a mastectomy is discussed:
Topic: Mastectomy for DCIS, but positive margin against chest wall
One of my posts in that thread also includes links to other threads where this has been discussed. So you are not alone in the situation you face - others have had close margins after a MX for DCIS too.
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hi there Beesie
Thanks for info. I have now opened a new forum so hopefully get some replies
Cheers
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