News: DCIS shouldn't be called cancer?
Comments
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I was just catching up on the posts since I signed off late in the morning. In reading the comments about Tamoxifen, I was getting ready to post to say pretty much what ballet just wrote. So, ballet, thank you! and I agree completely!
I think Tamoxifen and the AIs are great, life saving drugs. But they do have a small risk of very serious side effects. For women who face significant risk (particularly the risk of mets) from their breast diagnoses, the benefits from these drugs usually far outweigh these risks. But for women with DCIS, it's not so clear. So my comments about Tamoxifen in my earlier post were written with consideration to the fact that we are talking about DCIS in the DCIS forum. If I was posting in a different forum, I would position my comments quite differently.
In my case, my diagnosis was DCIS-Mi. So officially I'm Stage I and I would benefit from all 3 indications for Tamoxifen. However, I had a MX, so my risk of local recurrence is only about 1% - 2%, which means that the 50% recurrence risk reduction from Tamox would at most give me a 1% benefit. I do have one natural breast, and I am high risk to be diagnosed with a new primary breast cancer; based on discussions with my oncologist, today my remaining life time risk would be about 17% (double the risk of the average woman my age). That estimate is based on an assumption that I live till about 90 but if I were to take Tamoxifen for 5 years, I'd only get the full benefit for perhaps 8 to 9 years. My risk level for the next 9 years is more like 6%. If Tamoxifen reduces my risk by 50%, that's a 3% benefit. Then there is the risk of mets. With such a tiny invasive cancer, my risk is only about 1%. That's a very real risk - as I know all too well from a recent mets scare - but it's a very small risk, which means that I'd get an even smaller risk reduction benefit from Tamoxifen. Then, when I look at the list of serious side effects from Tamoxifen, even though each risk is just a fraction of a percent, it does add up. All in all, the benefits (the amount I would lower my 3 different types of breast cancer risk) vs. the risks (exposing myself to the potential of serious side effects) for me barely comes out in favor of the benefits. Based on that, my oncologist recommended against Tamoxifen for me. I was very surprised about that so I dug into the data myself and I ended up agreeing.
However... there's no question that if I'd had a lumpectomy (and thereby had a higher local recurrence risk), if I had a higher risk to develop a new primary (if I was BRCA+, for example), or if I'd had a larger/more aggressive invasive cancer, any of those factors might have tipped the scales in favor of Tamoxifen. So the important message is that everyone needs to assess hormone therapy drugs based on the specifics of their own diagnosis and pathology and personal/family health history. Just because it's right - or not right - for someone else doesn't mean that it's right - or not right - for you.
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Again, very informative. Hoping to hear more about Oncotype and DCIS, per another post I did earlier today.
I guess I am incredibly naive: I assumed that it was unethical for doctors to recommend drugs whose risks outweigh the benefits (like, they could get sued for doing it). My doctor always assesses that for me. I don't know what I would have done without an opinion I could trust, as I surely wasn't making the most informed decisions right after diagnosis, as well as right after chemo (major chemo brain). What I have learned from this discussion is, the medical community even has a more difficult time with DCIS than IDC figuring out who is truly high risk. This is what I didn't really understand until reading more carefully, and I still have a lot of questions based on Oncotype for DCIS...
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Hinds...Asymptomatic refers to an individual who does not have a lump, discharge from their nipple, breast pain, one breast growing at a quick pace, or changes in the skin color or texture of the breast. In other developed countries, many women are "invited" for screening beginning at age 50 and if they are asymptomatic and have clean images, they are told they may come back in two years, unless they become symptomatic and then they would require a diagnostic mammogram. Patients who already have had biopsies would also have more screening mammograms. Likewise, while the U.S. Preventive Services Task Force created an uproar in 2009 by recommending that women between the ages of 40 and 49 DISCUSS with their physicians their risk factors for breast cancer and then decide whether or not they should have annual screening mammograms, most American women are unaware of the recommendation and assume that they should begin annual screening at age 40. The bottom line is that a patient and their physician need to discuss their risk factors for breast cancer and decide together on an imaging plan that works best for that patient.
Adding to the mix, I found this very interesting small study:
"Tailored Breast Cancer Screening Program with Microdose Mammography, US, and MR Imaging: Short-term Results of a Pilot Study in 40–49-Year-Old Women"
http://radiology.rsna.org/content/early/2013/04/07/radiol.13122278.abstract
The conclusion is similar to other sobering studies:
"Conclusion: A tailored breast cancer screening program in 40–49-year-old women yielded a greater-than-expected number of cancers, most of which were low-stage disease."
That's great news, but also not so great news because the folks who believe screening mammograms save fewer lives is because they believe screening mammography does NOT pick up aggressive disease. They believe it picks up more TREATABLE "low-stage" disease. I always tell my friends that when they have a "clean" screening mammogram and then a few months later they feel something, that is not good. It's those diagnostic mammograms that are picking up the aggressive disease which everyone agrees are important.
And for anyone interested in the U.S. Preventive Services breast cancer screening's 2009 recommendations:
http://www.uspreventiveservicestaskforce.org/uspstf/uspsbrca.htm
And if I haven't confused enough people, I'll throw one more controversy into the mix with respect to heart disease. I'm not going to start in with the NCEP's statin recommendation. But, I want to point out that there IS a recommendation to determine if one is at elevated risk of a heart attack and should consider being on a statin. The NCEP looks at more than cholesterol numbers. They look at age, gender, sugar levels, blood pressure and family history when coming up with a patient's personal risk. Most people don't know their precise risk factor for heart disease. However, most people can tell you their cholesterol numbers. If one reads Harvard professor and practitioner John Abramson, MD's book, Overdosed American, one will appreciate how controversial the issue of statins and heart disease is. Which brings me to last week's news that former President of the United States, George W. Bush received a cardiac stent following his annual health exam. It appears his cardiac stent awakened a sleeping giant! Here's what U.S.A. Today had to say about the stent procedure:
http://www.usatoday.com/story/news/politics/2013/08/06/bush-stent-heart-surgery/2623111/
"...The Cleveland Clinic's Steven Nissen questions whether Bush will really benefit from a stent. Doctors typically place stents only in patients who are having heart attacks or significant symptoms, such as chest pain, says Nissen, chairman of cardiovascular medicine at the Cleveland Clinic. Stents can help keep blood flowing and reduce the risk of a heart attack in these patients.
But stents haven't been shown to reduce the risk of heart attacks in patients without symptoms, says James Beckerman, a cardiologist at the Providence Heart and Vascular Institute in Portland, Ore. Stents also don't help these patients live longer. And Nissen notes that stents themselves can become clogged up, causing greater problems."
Bush spokesman Ford said Tuesday that, while Bush didn't experience those symptoms, "the stent was necessary. His annual physical includes a stress test. EKG changes during the stress test yesterday prompted a CT angiogram, which confirmed a blockage that required opening."
A significant number of patients end up with stents after a routine physical, McPherson says. That's because some patients who experience occasional chest pain or shortness of breath may not tell anyone about their symptoms until a doctor asks.
Nissen said he's concerned about "overtesting" and overtreating people like Bush when they have no symptoms.
"He did a 100-kilometer bike ride," says Nissen, a feat that would be impossible for someone on the verge of a heart attack. "How can a stent make him better?..."
Dr. Nissen is the leading cardiologist at the leading heart hospital in the United States. He is basing his opinion on the COURAGE trial that was reported several years ago. And yet, most Americans believe that stents save lives. Stents do save lives, but not as many lives as people believe.
This is true with mammography screening. Mammography screening does save lives, but not as many lives as we believe they do. And just like with cardiology, patients need to educate themselves about their own personal risks and then understand how much screening and treatment they actually need. Unfortunately, medicine is a very messy and complicated field and at the end of the day, no one knows with certainty whether or not a particular screening or treatment can save or has saved their life.
Finally, I am not advocating that all of us have less screening and treatment. Instead I am advocating that patients and physicians do a better job at communicating. Sadly, like Beesie said earlier, both she and I have been here on these boards long enough to see some sisters decide on too little treatment that is not in our humble opinions good, and we've seen other sisters who have insisted on too much treatment....which is, not good either. But if sisters were able to understand the complexity of a diagnosis and our physicians did a better job of communicating, then perhaps more sisters would be receiving "better" care.
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Well, I find this whole screening issue very interesting. In the scenario (from other developed countries) where screening begins at age 50, and the patients come every other year, what constitutes a "clean image"? No evidence of a solid tumor? Would calcifications even be considered something to watch? or biopsy? What about lobular cancer, which doesn't always show easily on imaging? I'm not advocating excessive imaging, but trying to figure out whether mammographic abnormalities in the form of calcufications would no longer be considered abnormal. Having read the materials that Dr. Esserman has written, it appears that she does kind of go along with this approach. In other words, microcalcifications wouldn't be pursued, because they yield so many false positives, so we would reduce unnecessary biopsies. You also wrote about the screening of patients in other developed countries that:"Patients who already have had biopsies would also have more screening mammograms." So, if individuals have had a biopsy for a palpable solid tumor and it is found to be benign, then they would have more screening mammograms. Or does this mean that individuals with mammographic abnormalites would have more screenings? What about those of us with dense, lumpy breasts? Are we symptomatic or asymptomatic. According to the symptomatic criteria listed above, I wouldn't even have had mammography yet (age 61). Yes, it's true, I'm still alive and don't have invasive breast disease, so I guess, from that point of view the system works. I truly need to read some of the books you have recommended, in order to get into this mindset.
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Ballet... The sad reality is that dense breasts is a risk factor for breast cancer and screening mammography is of little benefit for those patients who have dense breasts. You mentioned that your breasts looked like snow on the mammogram. So did mine! So I was recommended to have sonograms to compliment my mammography. Some states now require patients to be notified that they have dense breasts. I was lucky because I knew that important info and my radiologist and I came up with a personalized screening plan that was supposed to work for me. Unfortunately mammography is also very bad at finding mucinous breast cancer even in breasts that aren't dense. Screening mammography missed my tumor. My GYN felt the lump at my annual check up and recommended diagnostic imaging. The diagnostic mammogram still missed my tumor and thankfully the sonogram identified it. When we looked at earlier sonograms, it appeared the tumor was located on two previous annual sonograms. Despite not being identified earlier, I still have a favorable prognosis because my disease is indolent.
So Ballet, we'd all like to believe that when we agree to all kinds of screening that we will find disease early and often enough so that there is a good chance that when we are treated, we can look forward to a long life. Unfortunately for some of us that is not true...and for others we will continue to believe it is true despite evidence that is contrary. -
Ballet...I want to clarify the relevance of dense breasts being a risk factor for breast cancer. more premenopausal women have dense breasts which make it difficult to see on mammograms. I think that was one of the reasons why the task force felt it was important for younger women discuss with their doctors what thpe of screening was appropriate fir them and when. I also wish more women understood that there was a thing called a bi-rad score. If more women knew these two concepts, then they could have a knowledgable discussion with their physicians and could then choose a screening and treatment plan that is right for them.
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Regarding Dr. Li... He was in the news again last week... His study regarding an up-tick in the risk of developing breast cancer being attributed to calcium channel blockers to reduce hypertension.
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And finally one more point about dense breasts that should make those of us with dense breasts breathe a little easier:
NCI Press ReleaseBreast cancer patients with dense breasts do not have increased death risk
Posted: 08/20/2012http://m.cancer.gov/news/pressreleases/2012/breastdensitymammogram
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RE all the above posts on Tamoxifen's real risks, to be weighed against the purported benefits. What's amazing, reading your sound reasoning for your own personal situation Beesie, and the reasoning others have explained elsewhere on other threads over time, is to remember that Tamoxifen is routinely offered and prescribed for people who don't even have IDC or DCIS.
A few years before my IDC (+dcis) diagnosis, I was diagnosed with ADH. I recall the surgeon offered me the option of taking Tamoxifen. I remember thinking, as she ran down the list of possible life-threatening risks (from blood clots to uterine cancer of course as I was premenopausal "young" woman of 43 or so) "Why would I take a drug, that has life-threatening risks, and is developed and primarily used to treat cancer, when I DON'T have cancer?" I asked her that, and she didn't dissaude me from this line of thinking. After all, taking T was no guarantee I wouldn't one day develop bc, just that I would lower my risk of developing it, apparently by 50%. I never reviewed the literature that led to its being prescribed for ADH. This was back when I just accepted what I was told by the medical establishment.
Of course, having just a few years later developed IDC (+ dcis), I rewind the video of my life in my mind, as I'm sure many others do, and I wonder, gee had I taken T then, would I have developed my IDC/dcis? Who knows. But I know it's pointless to think too much about the 'what if'. I need to remember how sound my judgment at the time was! And pathetically, I know, for all that went wrong I need to be grateful for all that went right. And keep my fingers crossed that the story, my story that is, ends that way.
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Jessica, that is an amazing post. You are so clear headed, thank you.
I used to get very annoyed with the "it's a crap shoot" talk on these boards, because I like logic and rigorous research. I did all that. "It's a crap shoot" is just a layperson's way of saying that there will be women who get nailed by this blasted disease no matter what they do, and I've learned, yet again, that DCIS has all its own rules, just like every cancer type. I was so mad this morning as I read a post where a gal had gone to the "magical 5 year mark" and then got mets. What kind of irresponsible doctor still trots that out to ER+ ladies?
You all are wonderful, please have a great day and thank you for all this amazing information. I am much better informed now.
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Above link...NPR...Sorting out the mammogram debate: Who should get screened - when?
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Thank you VR, for all of your extensive postings and links. Thank you, Jessica, as well. I was also diagnosed with ADH (and ALH) at the age of 43. Tamoxifen was in clinical trials, locally, for ADH and other high risk situations. My surgeon did not encourage me to take it, although I did some research. His only comments were that I should never take hormone replacement therapy. Ironically, at the time, I was trying to have another baby and was about to take some fertility drugs (when the fertility doc said I should have a mammo first). I don't regret not taking Tamoxifen, but then again, I consider myself very lucky, with only a DCIS diagnosis.
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Hmmm .... according to the link VR posted, I shouldn't have had/needed the routine screening that found my cancer (in my 40's, not particularly dense breasts). Sure, had I not had it found when it was, perhaps I would have eventually noticed it when it became large enough to be palpable, and maybe it would still have been "curable", but maybe not.
I still think that while it is possible to make generalizations as to who is at risk at a population level, when it comes down to the individual level it's still impossible to accurately say for an individual what their risks are. And while you can say that the risks of overtreatment outweigh the risks of underdiagnosis at the population level, when you are the individual being underdiagnosed, it's not so clearcut.
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Jessica, to me, once you've been diagnosed either as being high risk or with BC, it's all about picking the best of a bunch of bad options. And it's about deciding what you can live with most easily and what scares you the least (or the most). In some cases the numbers are clear-cut; either Tamoxifen clearly presents a greater benefit than risk or Tamoxifen clearly presents a greater risk than benefit (after a BMX for DCIS, for example). My numbers weren't clear-cut. If someone else had the same risk numbers as me, they might look at the same benefit vs. risk assessment and decide to try Tamoxifen. Like so many of the decisions we have to make when we are high risk or diagnosed with BC, it's about more than just the numbers.
I don't like that I'm high risk to be diagnosed again but I also know that I would worry a lot about the risks from Tamoxifen. In my case, I've had many breast lumps starting from when I was 16; I'm used to screenings and call backs and biopsies. I don't like them, but it's part of the routine. So that's easier for me to live with, and it scares me less, than having to worry about maybe 4 or 5 different new conditions that I'd have to watch for if I was taking Tamoxifen.
And there's something else behind my decision too. Two people who were close to me both died of DVT (deep vein thrombosis). Neither had breast cancer; both had different health problems that led to the development of DVT. But both were fine - their other health problems were being resolved - and then both died of a pulmonary embolism caused by DVT. Neither of them stood a chance; they were fine one minute and dead the next. The risk of DVT from Tamoxifen is small, but nothing scares me more than that. So I am more willing to live with my BC risk than I am willing to expose myself to the risk of DVT. That might not be completely logical but that's how my history plays into my decision.
I recognize of course that I might be diagnosed with BC again; if I am, it will be hard not to wonder if I made the wrong decision in choosing to not take Tamoxifen. But I will remind myself of my thinking at that time. When I made the decision, I thought about it this way: If I took Tamoxifen for 5 years, I'd get about 9 years benefit. Over those 9 years, my combined risk for BC (new cancer or recurrence) would be about 10% (technically the different risks aren't additive but I'm adding them together anyway). So let's say that Tamoxifen can reduce my risk to 5%. Here's how it would add up if I took Tamoxifen:
- 90% chance that I never was going to get BC anyway over the 9 years so I exposed myself to the risks and side effects of Tamoxifen for no reason.
- 5% chance that Tamoxifen will successfully prevent an occurance of BC over the 9 years.
- 5% chance that I'll get BC anyway sometime during the 9 years, despite taking Tamoxifen.
If I land in the first group, then why did I take Tamoxifen? And if I land in the third group, I'd be angry with myself for taking Tamoxifen. It's only if I land in that second group that I'll be pleased with my decision. So, thinking about the odds of where I'd land, I figured that if I was unlucky enough to be in the 10% and not the 90%, then I'd probably be unlucky enough to end up diagnosed with BC despite having taken Tamoxifen.
Convoluted logic, maybe. But that's how I knew that whatever happens, I can live with my decision. Someone else looking at exactly those same odds might make a completely different choice, and that's fine. We each have to make the decision that's right for us. The important thing is to make the decision based on the specifics of your own situation. And once you make the decision, move on and don't look back. Always know that you made the best decision you could with the information you had.
LtotheK, I'm not an "it's a crapshoot" person either. It's true that we don't know what's going to happen but having a 4% chance of something happening is very different than having a 40% chance of something happening. What you might choose to do in each situation is very different too. Too often people use the "it's a crapshoot" line as an excuse for not doing the hard work of educating themselves about their diagnosis and how each of the treatment options would affect them.
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Well stated Gero. When you hear you have "malignancy" in your breasts, yes you may be thankful to also hear it has probably not yet become invasive. But the treatment options offered to women are not too different from invasive, and are drastic. There has also been a can of worms opened now, for the rest of that woman's life. As someone else said, some have had recurrences, mets, and even died after this " non- cancerous" diagnosis. Not only that, but it's hard enough for friends and family to get the impact this diagnosis and treatment has on a woman. I have had many say to me ( dx'd with DCISin in both breasts, and got a double mx with recon in July this year), so good they caught it early, want to party now?
They expect that it's easy, because it wasn't invasive. Don't get me wrong, I'm thankful no evidence of invasion was found on me, but it's still difficult, even so, to recover from this trauma. DCIS has th word carcinoma in it, because there is in fact malignancy found. We don't know more about how, if, what causes invasion. downplaying this disease should only happen after more proof of non life threatening prognosis, and easier less invasive treatments, are discovered. -
As far as treatment options for DCIS, I decided to go all the way with the double mx, ( having it in both breasts helped with that decision), rather than endure multiple potential "lumpectomies", radiation, and tamoxifen. I find there is a "default" treatment plan that is first offered to women called " breast conserving" surgery, followed by the above mentioned treatments. Chemo would come into play if nodes show invasion, but most of the time with DCIS, nodes are not invaded.tamoxifen is another form of chemo therapy. Having seen what my mother went through, getting a lumpectomy then needing to go back in for more ( 50% don't get sufficient margins, and each hospital has a different protocol for what constitutes a large enough margin), and seeing how hard the radiation was for her, my goal was to bite the bullet and get it all out now, and hope not to have to undergo go more treatments.
So far it seems like my plan is working, they even were able to spare my nipples by biopsying right behind them. They biopsied my nodes, and I was clear, therefore was able to have autologous reconstruction at the same time as mx.
I think, especially with DCIS, women need to be sure they have examined all ramifications of the options in front of them. And also make sure they have looked thoroughly. Some hospitals really sell you on their particular specialty, and " don't know" about other options offered elsewhere. It's sad to me that we have to work so hard to get direction, and clarity,but I recommend not being scared into a default pattern of treatment, but rather doing homework and soul searching to figure out what will be the lesser evil solution for you.
One thing I was unprepared for was the psychological trauma after treatment, while healing.
It was bad enough during the time of diagnosis and discovery, but now on the other end, I find people can be disappointing, and it can be a lonely place as they think, well, you're fine now!
I suppose in some respects I am, but still need respite, still need to wrap my head around what just happened. I haven't bounced back yet, 3 weeks out now. I think that's ok, normal but those who have no clue have other expectations, and I'm finding that can be difficult to manage.
Good luck to anyone newly dx'd with DCIS, and also to those " survivors" out there. -
I wish the 'panel of top doctors' arguing for a not-cancer label and less-is-more treatment approach for DCIS were reading this thread. Posts here by incredibly well informed women are infused with personal experiences and insights that the 'top doctors' cannot know first hand.
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Carol, I think that many of the doctors do understand the issues and that's why there is so much disagreement within the medical community about whether and how and when this should be done.
But I think it's important to acknowledge that the issue that the working group was trying to address is a real issue. I've seen women who have small low risk diagnoses of DCIS, and no other significant risk factors (no family history, no high risk conditions such as LCIS or ADH, no previous diagnosis of BC, etc..) who've opted for BMXs and who've gone on to develop serious complications, ranging from infections and failed reconstruction, to on-going pain, to severe lymphedema (nodes don't need to be removed for DCIS if one has a lumpectomy but an SNB is usually done as a precaution if someone is having an MX for DCIS). So instead of a small surgery and possibly 6 weeks of rads (which in some of these low risk cases might not even have been necessary) and then most likely never having to deal with BC again, these women have put themselves in a position where they may have life-long effects from their DCIS diagnosis. So I appreciate the issue that is driving this debate.
But then there is the other side, which so of us have talked about in this thread. The focus of most of the discussion here has been on what might happen if there is under-treatment, and there certainly are lots of cases where under-treatment could have led to a much more serious diagnosis down the road. My case is likely one of those.
So it's complicated. I believe that a change really is necessary, but a very careful balance needed to be reached in order to reduce over-treatment that's driven by irrational fears (recognizing that not all supposed "over-treatment" is irrational at all) while at the same time not increasing the number of situations where there is under-treatment. I think most of the medical community understands the issues just as well as we do and I think they recognize the need to be very careful in whatever is done. I believe that's why this type of proposal, which has been made before, has never been accepted or implemented (except in Italy, where DCIS is now DIN). As I mentioned in one of my first posts in this thread, in 2009 the National Institute of Health Conference on DCIS recommended that "strong consideration should be given to remove the anxiety-producing term "carcinoma" from the description of DCIS." This was followed by an extensive review by a large group of cancer specialists from the American Cancer Society and the National Cancer Institute - the NCI being the same group that put together the working group that came up with the current recommendation. The decision was made to not change the name but instead to focus on communications.
There are some doctors - Dr. Esserman being one, and she was the lead doctor on this panel - who seem to be bound and determined to make this change happen, no matter what the implications. But I believe these doctors are in the minority. It will be interesting to see if this whole discussion fades away for another year or 2, as usually happens after a while.
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Carol, I think the reason for the divisiveness with respect to over AND under treatment is BECAUSE those "top" doctors and the rest of the doctors in all the specialties that deal with the breast ARE on the frontline and they are dealing, every single day, with patients who are trying make treatment decisions based on very controversial data. I think the takeaway message from this thread is to inform patients that there IS a controversy in the field of medicine and patients should know of this controversy as they embark on choosing a treatment plan that is "right" for them.
I think most physicians know that making treatment decisions is a complex process and this controversy makes the decision process that much more arduous. Sadly, I don't think this controversy will be settled soon. However, I do think that the vocabulary is changing slowly and I am hopeful that as we learn more about tumor cells, patients,with the help with their team of physicians, will be making "better" treatment decisions in the future. -
Beesie and VR, points well taken. Nonetheless, I still think the panel in question would benefit from the very eloquent perspectives in your and others' comments. Women posting here look at these issues through a lens that's simply not available to practitioners who have never had to make these treatment decisions for their own care.
I do respect physicians on all sides of the controversy. Probably we could say that controversy has led to a lot of scientific and medical advancement...however slow the pace!
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Hi all,
I was recently diagnosed with DCIS in left breast - in 2001 I had DICS + IDC in same breast. I wrangled with the 'it's just DCIS diagnosis' a lot. I've read most of these posts. I've talked to my oncologist, radiologist and 2 surgeons. I was really wanting to do the 'watchful waiting' that I've been reading about lately. I kind of felt that I was over-treated in my first go-round. Well... maybe not since I've developed a NEW DCIS dx in the same breast where I had lump, rads & tamoxifen (4 1/2 years, couldn't take any more after that). Dx is grade II-III, comedonecrosis & microcalcifications. Interestingly I found the area on this website where you can evaluate your path report which I did & found there that this type is more likely to become IDC - none of the drs. told me that. I think the drs. think because you've had it before you 'know it all'. Well, guess what - it was 12 years ago and no I don't keep all that in my brain.. All doctors were against the 'watchful waiting' and all felt that DCIS is cancer. I tried to get 1st surgeon to just do another lump but of course you can't do rads a 2nd time so she wouldn't do it. 2nd surgeon said she would but wasn't recommending it - I respected her for at least agreeing to do it tho. I know in my heart that I have to have the mx but have fought it every step of the way. I watched my sister go thru BMX 2 years ago with TRAM flap and it wasn't pretty. Plus I still had that 'it's just DCIS' in my head. Well, after reading a lot of your posts (which I also did back in 2001) I'm good with my decision to have the MX. I won't have the other breast done tho because I really don't want to have unnecessary surgery (just my choice, everybody is different). So, thanks for all of your posts, they all reassured me that I am making the right decision. Surgery is scheduled for 9/24 with immediate DIEP recon (which I believe will be so much better than the TRAM that my sister had - at least that's what I've gathered from the DIEP 2013 board). BTW, sister dx twice also, stage 1 1st time, stage 2 2nd time - neither found on a mammo so I am grateful that both of mine were so no chemo which she had both times.. Had genetic testing done & neither has BRCA,B mutation.
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Carmelle, welcome to our little corner of the discussion board! Your situation is a perfect example of why the medical community needs to be careful before they make wholesale changes to what DCIS is called and how DCIS is treated. Grade 2 - 3 DCIS with comedonecrosis is a serious diagnosis, one that puts you at high risk of developing invasive cancer. In your case, given that you've already had a previous diagnosis that was a combination of DCIS and IDC, there's probably little question that IDC is where your current diagnosis is heading. So someone in your situation should not be worrying that a MX is over-treatment - not for an aggressive DCIS that is a second diagnosis of BC.
That's not to say that over-treatment isn't a problem with some low risk diagnoses of DCIS, but doctors and the media need to do a much better job of explaining that all DCIS is not alike. Right now too many doctors, and pretty much all the articles in the media, lump all DCIS together and have patients thinking "it's just DCIS", regardless of the particulars of the DCIS diagnosis. To me, that's the real problem. I'm glad that you found this discussion and that it helped you realize that your diagnosis is more than "just DCIS".
Good luck with your mastectomy surgery.
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Thanks Beesie. There is an amazing group of women on this site and I am eternally grateful for you all. I was talking to my neighbor yesterday and telling him about this site - he had prostate cancer and also fully researched his options - however he couldn't find any other men willing to talk to him about it and no site like this existed for him. Makes me proud to be a woman...:)
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Thank you Beesie.
I have been thinking about personal side of this topic ever since it was broadcast in the news this summer. It left me with a feeling of discomfort that I could not put words to. Please don't misunderstand, I was raised by a scientist and I have great respect for research and am supportive of the process moving forward.
As you can see in the description of my diagnosis attached to the response, I am one of the women diagnosed with DCIS. In a word, my concern with the recent shift in thinking about how to classify DCIS is 'minimizing'. Taking away the current description without replacing it with an appropriate alternative risks creating an environment of downplaying the impact the decisions and treatment one must make.
Even before this announced change in how to 'classify' DCIS, I encountered a sense of not belonging. I recognize that I am very lucky but have still undergone life changing events. I am concerned that without clarity around how to talk about DCIS with an appropriate level of seriousness, women risk feeling minimized and possibly ambivilent about addressing a serious medical issue.
I am approaching 18 months post bilateral mastectomy and 12 months post whole breast radiation and will have my final reconstructive surgery in September. I was found to have grade 3 multi-focal DCIS with extendive areas of comedo necrosis. After surgery, it was found that I did not have clean margins and required radiation. Even I was uncertain how to approach radiation 'Why radiation, this is not cancer' I am fortunate that I had a very patient group of physicians who answered my many questions and allowed me time to research the risks and benefits before committing to a decision.
Thank you for allowing me the space to voice some of my feelings and a perspective on the subject.
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Cathy, your case, like that of Carmelle, is another example of the seriousness of multifocal high grade DCIS. You required whole breast radiation after mastectomy, if I am reading things correctly. On the one hand, you are told you had "only" DCIS. On the other hand, you had whole breast radiation, which really amounted to radiation to the chest wall. This treatment is more extensive than the treatment that many women with early stage invasive cancer go through. If it's small enough, early stage IDC can be removed in a single or at most two lumpectomies. In your situation, the DCIS was apparently so extensive, that you didn't even have clean margins post-mastectomy. While radiation post mastectomy for DCIS is unusual in itself (although it does occur), it is usually done for a particular area that has a close margin, not the entire breast area. You had a potentially dangerous situation, and the MD's took it very seriously. DCIS is non-invasive (unless it has microinvasion), so it is different from IDC for the lack of immediate concern for metastasis. At the same time, the more aggressive forms of DCIS can be extensive and very high risk for invasive breast cancer (and possibly more aggressive forms of IDC, if the bc recurs). I definitely feel that women with DCIS can feel minimized (or minimize their own situation). I have done that to myself, because I know so many people with much more significant issues. I also feel extremely lucky that I didn't have invasive disease. They can change the name, but the public (and future patients) need to understand that it's a real disease that needs serious treatment, regardless of what it's called.
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on a related subject, went to pcp with symptoms consistent with low thyroid levels but because of my history of dcis, the gi symtoms warrented a gi consultation, a ct and us to state yes,my symptoms were probaly from low thyroid and nothing else. also on the ct order form, there were listed 3 diagnosis" on why the ct was being ordered, i work in healthcare so i know abdominal pain or change in bowel habits is enough to warrent a ct but they were no's 2+3,the number one reason i was having this ct was listed as breast cancer history!
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Hi Juliet, it's so crazy how the system works. You have a higher index of suspicion because of the breast cancer history which was DCIS, and at the same time, on another bco.org thread, there are several women who had invasive breast cancer whose bone metastases were very delayed in being diagnosed because simple X-rays weren't ordered, even when the women appeared in the ER in extreme pain. They were told: sciatica, etc. So, sometimes the bc history is taken too seriously and sometimes (when the index of suspicion should be higher) not seriously enough. One woman commented, in fact, that X-rays in the ER are readily ordered for possible fractures, but if a woman has a history of bc, that is not taken seriously enough to warrant an X-ray.
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All these posts are so informative and a little overwhelming for a newbie like me (diag. May) and I am trying to learn all the abbreviations. Is there somewhere on this website that lists all them? When I first met with the surgeon after a second mamogram he said, "Well, you don't have cancer. You have DCIS)." But then I was given info on bc and sent to the cancer center then I got on here and was very confused. A nurse said, "Well DCIS is cancer and it would help if we all got on the same page wouldn't it?" I just started Aromisin today and already have a lot of joint pain so hopefully this won't make it worse. Should my doc have ordered a bone density? Haven't had one in about 5 yrs when it was good. Any other pretesting suggested? Thanks all. Also, I can't figure out how to put all my info below my posts. I entered it under my profile and said public??? Thanks.
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Oh, sorry, I see it there now.
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Thanks, kayb, I saw my GP today and she has me scheduled for a bone density test.
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