has anyone with dcis decided to wait

Robby · February 2009

Mlaw: I wonder if you shouldn't consult another MD. I can't imagine any MD I've met advising MX for your situation as you describe it. However I think you are wrong to say DCIS isn't cancer. Isn't that a little like saying prostate cancer isn't cancer till it leaves the prostate. Men do have an option called "watchful waiting" when cancer is discovered in their prostate. However they have no option called lumpectomy which you do have. From what I have read, and having had several lumpectomies prior to my MX, I really think you should consider having the DCIS surgically removed. The surgery isn't bad from what I have experienced.

Maya78696 · February 2009

I too had DCIS, Stage 0. Some people call it a pre-cancer, others call it cancer. I had the lumpectomy. Mine was not particularly disfiguring, but I had only one incision. I did have to have a second lumpectomy to get clear margins and this happens fairly frequently. If you look at me wearing clothing, even a swimsuit, you couldn't tell. Without clothing, there is a scar but it has faded a lot in 5 years. If a man doesn't want you because you are a BC survivor, believe me, you don't want him. My husband kids me that if I was in New Orleans for Mardi Gras, the guys wouldn't notice the scar. I also did radiation. I had a few side-effects, but nothing awful. I waited a week for surgery, but only because I take aspirin and had to let it get out of my system. I took only Tylenol for the stinging and did fine. It does take a few weeks for the soreness and pulling to subside. I waited 2 weeks before returning to driving.

Please consider going ahead with the surgery. You don't want to take a chance it will spread from the duct. Someday there will be a test that can tell us for sure, but it just isn't there yet.

Best of luck.

DebzNY · February 2009

I am going to post my personal journey with DCIS but also to Caution....Treatment plan is Your personal choice based on advisement from Medical professionals. I emphasize Treatment Plan.....It MUST BE TREATED........Anyone who has experienced the journey knows WE MUST TREAT DCIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Family hx: Mother Stage IV, Breast Cancer with mets to lungs, Sister -Stage 1...IDC...lumpectomy with rads....Aunt and three first cousins different stages of Breast Cancer. Very strong family history....all stages of breast cancer...My story begins....

2006-2007 Technology has advanced from my families journey. A B9 finding on my right breast found-core bx found A Typical ductal hyperplasia....more than 4 CM. Sterriotacctic bx found DCIS right breast. First excisional....didn't clear margins...second incisional ...didn't clear margins....I was scheduled for rads but was then adding an oncology consult without clear margins....DCIS...STAGE O....I said...NO WAY!!!!!! Then what about the left breast that wasn't bx only had mammo...It was clear................"Supposedly"

Long story...I opted for bilateral mastectomy with diep reconstruction....when pathology came back....I had DCIS beginning in Left Breast.............I am so happy with MY decision...I had a very strong family history.

I went to reconstruction classes and spoke to all the medical professionals I met. At Memorial Sloan Kettering...many of the nurses and techs I met...were Breast Cancer survivors themselves.

I was amazed at the people Many of these professionals had DCIS and opted for mastectomies.

When I asked them how they made their decisions...they all answered the same way...

BECAUSE we see so much of it.....and the hardest thing they said was telling someone....the cancer returned! They didn't share actual statistics but they all said the same thing.

I am not telling anyone to favor one treatment over another....I am only sharing my personal choice and how I came to that decision.

I am sharing...DCIS must be treated.....lumpectomy with rads is following the gold standard....but margins must be cleared.

MLawe · February 2009

To answer one question, no I don't take Tamoxofen. I am pre-menopause and would not consider that. I wouldn't consider it even after menopause, given what I've read about its side-effects. And, I have my views of my particular type of DCIS. Noninvasive, low-grade DCIS is not a dire emergency. After seven years, I'm healthier than most folks I know -- as I was before the diagnosis. There is no history of breast cancer in my family and I have lived a healthy lifestyle from my early twenties, with lots of exercise and a fairly good diet, etc. I never took birth control pills, so there were never any additional hormones in my body.

The one thing I won't put up with is when doctors try to scare me, often because they need to cover themselves. That's something that immediately gets my dander up. If someone tries to scare me into a decision, I won't do it. I am not foolish, nor am I in denial. Believe me, if I had a cancer that was at Stage 1, I would immediately have surgery.

And, I have to say, I am happy that seven years ago I decided not to step onto the breast cancer treadmill -- sorry for that term, but that's the best way for me to describe it -- when I really didn't have to. Every case is different and there is a wide range of cancers. Everyone should take the time to get the best information possible and do what's right for them.

qutypy · February 2009

this is a very interesting thread. I was diagnosed late December with DCIS. Had a biopsy done the next day and was told about the micro calcification's, the percentages, the chances, the possibilities, etc, etc.... I knew I couldn't live with maybe's, or possibilities. I have three young children at home and need to be as aggressive as possible. I would probably be as aggressive even at an older age, I'm 46 now. I had bilateral mastectomy with LAT reconstruction on Jan. 22nd. I researched this to no end, discussed with many people in the medical community and still came up with the same thing," possibilities"..That really clinched it for me. Recovery is definitely a bitch but not impossible..I am already driving 2 weeks post op...Sorry to preach, but the stories of women younger and younger dying have gotten to me these past few weeks. I hope all women treat all cancer as aggressively as this...Thank you for this board, it has become so important to me.

WF2 · March 2009

There are a number of studies that suggest a significant percentage of cancers detected by mammography and subsequent testing would regress without intervention. The most recent was published in Archives of Internal Medicine and I have posted the abstract here:

The Natural History of Invasive Breast Cancers Detected by Screening Mammography

Per-Henrik Zahl, MD, PhD; Jan Mæhlen, MD, PhD; H. Gilbert Welch, MD, MPH

Arch Intern Med. 2008;168(21):2311-2316.

ABSTRACT

Background The introduction of screening mammography hasbeen associated with sustained increases in breast cancer incidence.The natural history of these screen-detected cancers is notwell understood.

Methods We compared cumulative breast cancer incidencein age-matched cohorts of women residing in 4 Norwegian countiesbefore and after the initiation of biennial mammography. Thescreened group included all women who were invited for all 3rounds of screening during the period 1996 through 2001 (agerange in 1996, 50-64 years). The control group included allwomen who would have been invited for screening had there beena screening program during the period 1992 through 1997 (agerange in 1992, 50-64 years). All women in the control groupwere invited to undergo a 1-time prevalence screen at the endof their observation period. Screening attendance was similarin both groups (screened, 78.3%, and controls, 79.5%). Countsof incident invasive breast cancers were obtained from the NorwegianCancer Registry (in situ cancers were excluded).

Results As expected, before the age-matched controls wereinvited to be screened at the end of their observation period,the cumulative incidence of invasive breast cancer was significantlyhigher in the screened group than in the controls (4-year cumulativeincidence: 1268 vs 810 per 100 000 population; relativerate, 1.57; 95% confidence interval, 1.44-1.70). Even afterprevalence screening in controls, however, the cumulative incidenceof invasive breast cancer remained 22% higher in the screenedgroup (6-year cumulative incidence: 1909 vs 1564 per 100 000population; relative rate, 1.22; 95% confidence interval, 1.16-1.30).Higher incidence was observed in screened women at each yearof age.

Conclusions Because the cumulative incidence among controlsnever reached that of the screened group, it appears that somebreast cancers detected by repeated mammographic screening wouldnot persist to be detectable by a single mammogram at the endof 6 years. This raises the possibility that the natural courseof some screen-detected invasive breast cancers is to spontaneouslyregress.

WF2 · March 2009

To Musicale257 -- I understand your reasoning. It is how I feel as well. It's interesting that there isn't as much support for women who choose a watch and wait approach to DCIS. I can understand why some women would want to have a mastectomy because of even a small increased risk of cancer, but like you I look at things the other way around. People seem to have a very hard time accepting that choice.

There is very poor information about the natural history of DCIS and anyone who looks at what is out there is likely to conclude that there is a *whole lot* of overtreatment going on. The problem is we don't know who is being overtreated. Anyway, for me, I've given it a tremendous amount of thought and I'm willing to live with the uncertainty. I have had people close to me die of cancer but I've also seen people suffer a great deal because of cancer treatment. I thus find the scare tactics about cancer to be quite irritating. Everyone has to decide what their own priorities are.

You might be interested in a recent article in the Jan 27 issue of the British Medical Journal about the poor quality of information given to women about mammography. Women are not being informed about the risk of overdiagnosis and overtreatment. Here is the link to copy into your browser, or just go to bmj.com and type breast screening, the facts or maybe not into the search box: http://www.bmj.com/cgi/content/full/338/jan27_2/b86?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=mammography&searchid=1&FIRSTINDEX=0&sortspec=date&resourcetype=HWCIT

PSK07 · March 2009

WF2 - other than the one data analysis (I would use the word study very loosely) please cite other analyses that show cancer disappearing. I believe that some of the comments made about the Norwegian analysis were that there is truly no proof that the cancer went away.

There is no way of knowing 100% which DCIS will stay ok and which will become invasive. Should they be able to figure out such a thing, we would all benefit. In the mean time, I won't take that chance. Would you?

Lee18 · March 2009

Let's assume that 1/5 cases of DCIS are detected early and will go away on their own. For those who are thinking about no treatment -- how do you know if you are that 1? If you assume you are that one, is that it, do you stop all screening -- on what grounds? And if you want to wait and see, what do you wait for -- what do you need to do keep track of your cancer and make sure it is going away and not becoming invasive. Can you detect when it is about to transition to invasive? How much time do you have if the cancer takes a turn for the worse? These are all questions that you had better think about before ignoring the possibility that you cancer will become invasive. Finally, have the authors of the study actually found anyone who they traced from having cancer to not having cancer and how do they suggest you find out if you are that sort of person?

Deirdre1 · March 2009

I think we have got to stop anticipating! When I was just "high risk" before I had the results of my MRI or BRCA - they (genetic counselor) suggested that with all the cancer's in the family perhaps I should consider, prophylactic mx, ovary removal, uterus removal and start taking Tamoxifen - this all with JUST "high risk".. If we take this logic, and I look at all the cancers in my family I should remove thyroid, ovaries, uterus, brain, lungs, liver, leg, spine etc etc... we can't approach life as if we can remove all the threats in life - none of us get out of here alive! We must be sure that we leave a body that can live, or there is just no point at all! I believe that we must be very careful or we will end up with only the shell (and that's assuming there is now skin cancer in our families<grin>) of ourselves and then our quality of life is gone - I most certainly don't want to live that way.. the body is good at turning around disease I say give it a chance if your life is not at "immediate risk of death" - sorry bad day and I think I am just venting!!!

ChrissyCA · March 2009

A friend of mine introduced me to her friend who was diagnosed with DCIS in her right breast 6 years ago. At the time, it took Sheila 4 months to make her decision to have a bilateral mastectomy. Her pathology report showed it had become invasive and she had to go through chemo and radiation.

I'm not a doctor but I do know there are other risk factors that have to be considered in my case it was family history, exposure to the DES my mother took when she was pregnant with me, and the fact that I had 2 children after the age of 35.

Lee18 · March 2009

So --- is the choice what Dierdre1 says: cutting out everything vs lumpectomy or mastectomy? Hardly. For many of us we believe that considering the options, taking the steps we chose as best we can evaluate with the help of Drs, data. and common sense --- that's the way to go. We shouldn't be driven by fear nor by paralysis. Too much action and no action are both dangers. Meanwhile, does someone have an answer to the question I posed above -- what criteria should be used to decide when to take necessary action to preserve and enhance one's life? As the song goes, "the whole world is a narrow bridge but the main thing is not to fear." Doing to little out of fear is equally bad as doing too much out of fear, in my opinion, and doing nothing when diagnosed with cancer seems to me to be doing too little. We don't just live in the moment, and what we do or don't do now will in part determine what we can and can't do in the future.

Deirdre1 · March 2009

Lee18: I think you misunderstand, what I am saying is that the doc's and genetic counselors would have us remove all organs and that is extreme..If I had been motivated by THEIR fear I would have taken out all the organs they suggested - I did move when I received a dx of cancer and the shear volumn of confussion on behalf of the doc's was what led me to make the decision of a bi-lateral mx.. but I didn't take out the uterus, ovaries etc.. We CAN'T answer your question because the criteria is all over the place within medicine - when it comes to DCIS . Some will argue there are clear lines but if your doc can't clarify this it is because there is a lack of good knowledge when it comes to DCIS. Beesie can give you stats, but they change almost daily.. You must do what YOU feel will "preserve" your life, though I'm not sure it will "enhance" it at all! Best!

WF2 · March 2009

To PSK07: Actually, yes, I would take the chance. That was my whole point. I think it should be the individual's decision and that it is necessary to weigh the risks and benefits in the context of your own values. Treatment for DCIS is not necessarily benign.Lumpectomy is usually followed by radiation therapy, which may raise the later risk of heart problems or risk for rare types of cancer. Mastectomy is often followed by reconstructive surgery, which can lead to problems of its own...the need for revisions, surgical site infections, and so forth. If tamoxifen is used, it raises the risk of blood clots and uterine cancer.

We know that some women, possibly a majority, with DCIS will never develop cancer. Currently we don't have any way of predicting who will progress and who won't. Some women look at that fact and want to treat DCIS aggressively. I think most people reach that conclusion. But just because that is the right decision for most people doesn't mean it is the only reasonable decision. I look at these facts differently. When I balance the risk of progression against the risks of treatment (which for me would include a very high psychological cost), I find that I would rather take my chances. It's the right decision for me.

Deirdre1 · March 2009

WF2 - I believe Barry has decided to wait also.. it is a reasonable choice - as reasonable as all the medical one I believe! Good Luck and I hope you never face cancer again!!! BEst

Lee18 · March 2009

Just to summarize some typical data (correct me if I'm wrong) "Approximately 40% of patients with DCIS treated with biopsy alone, without complete excision or further therapy, develop IBC. Most DCIS itself is harmless if it is detected and excised before it can progress to IBC, and the current approach to DCIS treatment is aimed at just that goal." The Oncologist 2007;12:1276–1287

After considering the possibilities, just as some said above, I decided that I didn't want radiation, I didn't want tamoxifen, I didn't want reconstruction, I didn't want implants and I didn't want invasive cancer. So I suppose I could choose to watch and wait -- but I didn't know what I would be waiting for since I already knew I had cancer spreading through my ducts and a 40% chance of it becoming invasive -- and that if it became invasive my options for treatment would be severly constrained and likely to involve more things I didn't want especially chemotherapy. Hence I still don't know from the discussions above (maybe I missed it) what one waits for if one has DCIS -. It seemed I had several choices -- removal through spontaneous remission or removal through surgery or treatment by wishing it wouldn't become invasive. I don't think I could have taken the first or the last psychologically. There was at least a 40% chance of something quite a bit worse occurring. It was bad enough learning I had it in me, I would have felt it was in there waiting to come out all the more so since the data show that it happens quite a bit -- and I didn't want to wait for it to become invasive so .... I really seemed to only have one choice -- removal through surgery -- MS. IT's true that there is no perfect response. However, the odds of any of the potential treatments going wrong seem much lower than the odds of doing nothing going very very wrong.

crystalmoon · March 2009

I commend yor decision musicale. I recently turned 40 and had my first mammo because of it was routinely suggested by my gyno. I am now upset because she didn't counsel me on the potential harms of screening mammography. The radiologist's report said a cluster of microcalcifications in right breast with no significant pleomorphism-Birads 4 biopsy advised. I scheduled a biopsy and didn't go through with it. I feel I got off the "Cancer Treadmill" as you call it just in time. Now I might have DCIS but I'd rather not know because based on everything I've been reading there is a lot of overtreatment going on.If I knew then what I know know, I would never have the darn Mammo in the first place and live in blissful ignorance.The United States is the only country that recommends mammos to premenopausal women when studies have been done that there is no reduction in mortality because of screening in this age group (40-49). If I had the biopsy and it came back as DCIS it would be hard to do nothing so I'd rather not know. SO no more mamos for me.

javagirl39 · March 2009

When I first created this thread, I had no idea that it would become such a hot topic. Thanks to everyone who replied to my question re: waiting.

At the time that I had created this thread, I was feeling stupid stupid stupid that I had not gone to the doctor sooner to have the lump in my breast checked out. Honestly, now I can't remember when I first noticed the lump but I do know for certain that I made a mistake. It must have been denial to the extreme that I had such poor judgement -- usually when it comes to important stuff, I often do the right thing, but in this case I didn't.

After getting my biopsy results, I really hoped that the DCIS that was found had not become invasive. I had surgery last month and learned just a few days ago that the cancer had become invasive measuring 2.1 cm. It is high grade and also HER2/neu positive. I found out that I need to have chemotherapy and this terrifies me. I have to say that I made the biggest mistake of my life not having the lump checked out when I first noticed it. I hope that others will learn from my mistake that you just don't know until the investigations are done i.e. go to your doctor, have the mammo, do the biopsy, have the surgery -- whatever the case may be -- do what you have to do to find out for sure -- waiting and watching may make sense only after investigation if doctors advise it but please just find out for sure. No one can prove whose DCIS will go away on it's own.

crystalmoon - living in blissful ignorance may come with a cost. I lived in ignorance and now I am paying for my mistake.

Christina

Beesie · March 2009

crystalmoon,

Although BIRADs 4 suspicious calcifications turn out not to be cancer in about 80% of cases, if the calcifications are a sign of cancer, while most often the cancer is DCIS, there is also the possibility that there could be invasive cancer. My calcs were a combination of ADH (pre-cancer), DCIS (non-invasive cancer) and IDC (invasive cancer). Quite a few women who've come through this board have been diagnosed with invasive cancer after calcifications were identified on their mammogram. So it's incorrect to assume that calcifications are at worst a sign of DCIS.

I have to be honest and say that I don't understand the benefit of not having the biopsy to find out what your calcifications are. What are the possibilities?

Your calcs might be totally benign. No further action will be necessary.
Your calcs might be ADH or another high risk condition (ALH, LCIS). Since these conditions increase breast cancer risk (to anywhere from 20% - 40%), most women opt for more diligent screening, including possibly MRIs and some women choose to take Tamoxifen. Alternately, some women take no further action and that might be the decision you'd make.
Your calcs are DCIS. If they low grade DCIS, while most women would have surgery to remove the area of DCIS and possibly follow with radiation and/or Tamoxifen, given how you feel about the risk level from DCIS, with low grade DCIS you might decide to do nothing. On the other hand, if your calcs are high grade DCIS, you might look at it quite differently. Based on studies that have been done, the majority of experts believe that the risk that high grade DCIS will become invasive is very high. Most, if not all, high grade DCIS (particularly with comedo necrosis) will eventually become invasive. In fact in anywhere from 15% - 30% of cases where high grade DCIS is found in a biopsy, some IDC will be found when all the affected breast tissue is removed. So with high grade DCIS, you might choose to have the area of DCIS removed, possibly (but not necessarily) followed by radiation and/or Tamoxifen.

I don't mean to be impolite, but the only reason why I can think that it would be better to know not what your calcs are is if you don't trust yourself to make the right decision (right for you; never mind what anyone else might think) if you have all the information. Personally I'd rather make an informed decision based on understanding the risks and assessing my own tolerance for risk (I happen to have a fairly high risk tolerance).

Some info on DCIS risk levels by grade:

The natural history of DCIS varies according to the grade of the DCIS detected. The natural history of low grade DCIS is that approximately 60% of lesions will become invasive at 40 years follow-up. The natural history of high grade DCIS derived from local recurrence rates within high grade DCIS lesions, which have been inadequately resected and not given radiotherapy, suggests an invasive risk of at least 50% at 7 years follow-up. Given the average life expectancy of women with screen-detected DCIS is 25 years, this suggests high grade DCIS is an obligate precursor of invasive disease. There is a strong correlation between the grading of invasive cancer and the grade of DCIS from which it arose. This suggests that approximately 50% of low grade DCIS detected at screening will represent overdiagnosis while overdiagnosis of high grade DCIS would be rare. The natural history of intermediate grade DCIS is as yet unknown. Only 15% of screen-detected DCIS is low grade, suggesting that overdiagnosis is uncommon. http://breast-cancer-research.com/content/6/S1/P23

The researchers concluded that this data will help aid physicians in understanding the risks and/or benefits for specific groups of women with DCIS being treated with surgery alone. The author stated that high-grade DCIS carries a significant risk of recurrence with surgery alone; however, depending upon patient and physician preferences, low or intermediate-grade DCIS may be treated with surgery alone, depending upon individual risks and/or benefits of radiation and/or hormone therapy. http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx?id=38808

Overall, 13% of cases in which the SCBB (stereotactic core breast biopsy) showed DCIS only (i.e., without any evidence of invasion), had invasive disease in the subsequent excision. This finding was significantly correlated with DCIS grade (low: 0/26 [0%], intermediate: 2/31 [6%], high: 10/36 [28%], P < .001). http://www.nature.com/modpathol/journal/v15/n2/full/3880497a.html

Mary22 · March 2009

I was given the option after my second mammo to wait 6 months or have a biopsy, I chose the biopsy. Once I chose the biopsy there was no turning back for me. When the radiologist said DCIS, I immediately scheduled an appt w/ a surgeon. When the cancer was removed it turned out to be fast growing and had micro-invasion. With early detection, I was spared chemo(because it had yet to spread to my lymph nodes) I was spared a mastectomy, and I will have a full recovery. More than 30 years ago my mother played the wait and see game with ovarian cancer and lost her battle. With so much medical technology it is better to get treated asap!

Beesie · March 2009

Christina, I had been wondering how you were doing and what the results of your pathology were. I'm so sorry to hear that you have invasive cancer, and HER2+ too. Damn.

Best of luck with chemo. I know that it's rough on some women but others get through it much more easily than they expect. I hope that you fall into the 2nd group. I can't offer any advice but I'm sure that there are many women in the Chemo forum who can offer suggestions to help get you through it.

javagirl39 · March 2009

Thanks Beesie. Learning about HER2 and high grade has been scary but there is hope -- I read that Herceptin has been successful for treating HER2 positive and that high grade responds well to aggressive treatments.

qutypy · March 2009

hi Crystalmoon, I'm curious as to where you got the information regarding mortality rates in premenopausal women. After reading quite a few postings on this board alone, it would seem that your info may be a bit wrong. So many young women dying needlessly or having a mastectomy as their only option. I will encourage my daughters to start their mammos way before 35..I want them to live to see their own grandchildren. I wish you well with your decisions, but hope most women take DCIS seriously.

2Hands4me · March 2009

I also was diagnosed with DCIS on Bx and there was microinvasion on the final path report. We knew from the biopsy that the DCIS was high grade. Watchful waiting might work for a low grade DCIS, but I'm very glad to have the IDC removed! Next step would be lymph nodes and those were clear for me since it was early. Everyone must make their own decision, but knowing that DCIS can someday become IDC was too big of a risk for me. The way I understand it, the DCIS could have already been there for awhile, so no one knows when, or if, this particular kind will become microinvasion tomorrow or in 10 years. Please keep asking questions, getting second, third or even fourth opinions, and decide for yourself. A few weeks to decide the right approach for you is OK. I had the radiologist opinion, the surgeon, the oncologist, and a surgeon friend, in addition to personal friends who have been in a similar situation. Dr. Susan Love's "The Breast Book" was recommended to me, and I was glad for that in addition to the internet and the medical opinions. I chose mastec. without reconstr. but that is what is right for me. It is do-able!

crystalmoon · March 2009

Hi Bessie, thanks for you reply. I was just wondering how many women live with microcalcifications in Canada and Europe or any other country where screening mammography is not recommended until age 50. If I was living there I would not have to go through this. Why is it age 40 in this country? I tend to agree with Michael Baum, who feels it's unethical to give mammos to premenopausal women.That's why he withdrew from the screeing program in England.

Beesie · March 2009

Interesting question. Yes, I suspect that in Canada and in some European countries women do live with undetected calcifications for longer than in the U.S., where screening starts at age 40. But does this account, at least in part, for the difference in survival rates? The U.S. has one of the best breast cancer survival rates in the world, better than most European nations. The UK rates are particularly bad. Being Canadian, I find it interesting that Canadians have a longer life expectancy than Americans and our survival rates for many cancers & other diseases are higher (I had to get my plug in for the much maligned Canadian healthcare system Wink ), yet our breast cancer survival rate is slightly lower. Why is that? Here's article that talks to this:

http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=1380891&pageindex=1#page "Patients in the United States and Ontario with the diseases studied, except for breast cancer, experience very similar survival. The greater use of mammographic screening in the United States could account for that country's higher breast cancer survival rate by promoting earlier and therefore more efficacious treatment, by introducing bias, or by a combination of both treatment and bias factors."

Here's another more recent article comparing U.S. survival rates to those of Europe. Again, breast cancer is noted as one area where the U.S. rates are better than those of Europe: http://www.medscape.com/viewarticle/561737 "The greatest differences were seen in the major cancer sites: colon and rectum (56.2% in Europe vs 65.5% in the United States), breast (79.0% vs 90.1%), and prostate cancer (77.5% vs 99.3%), and this "probably represents differences in the timeliness of diagnosis," they comment. That in turn stems from the more intensive screening for cancer carried out in the United States, where a reported 70% of women aged 50 to 70 years have undergone a mammogram in the past 2 years, one-third of people have had sigmoidoscopy or colonoscopy in the past 5 years, and more than 80% of men aged 65 years or more have had a prostate-specific antigen (PSA) test. "

And another even more recent study: http://news.bbc.co.uk/2/hi/health/7510121.stm "The study showed the US had the highest five-year survival rates for breast cancer at 83.9% and prostate cancer at 91.9%. Japan came out best for male colon and rectal cancers, at 63% and 58.2% respectively, while France fared best for women with those cancers at 60.1% and 63.9%. The UK had 69.7% survival for breast cancer, just above 40% for colon and rectal cancer for both men and women and 51.1% for prostate cancer."

And here is a chart from the World Health Organization that compares breast cancer mortality rates by country. The last year in which most countries' data is available is 2004:

http://www-dep.iarc.fr/WHO/table2.asp?cancer=92&sex=2&age_from=1&age_to=18&period=2004&sort=3&submit=Execute If this link doesn't work, use this one: http://www-dep.iarc.fr/ and use the WHO data (click on "WHO" at the top), to build a table by cancer type (click in the left hand column), by selecting "Breast Cancer", "Female", "2004" and "ASR" (which equalizes mortality rates across the country by age).

Lastly, although Michael Baum disagrees, here is an article that suggests that increased screening in the U.K. has been effective at reducing the number of deaths from breast cancer: http://news.bbc.co.uk/2/hi/health/7176386.stm "Breast cancer screening may have reduced the number of deaths from the disease by at least 30%, a study looking at one programme suggests."

I truly do understand the concern about over-treatment of DCIS. But to me, over-treatment is not a given once one has been diagnosed with DCIS. Once diagnosed with DCIS, you have a choice on how to treat it. Some women diagnosed with low grade DCIS have chosen to have a lumpectomy only, without radiation or hormone therapy. A few have chosen to do nothing. Certainly none of these women were over-treated. Many other women have chosen to have a mastectomy; some have had bilateral mastectomies. The medical community might say that these women were over-treated, but these women made a conscious choice, for their own personal reasons. If they don't feel that they were over-treated, then is there a problem? And for those who do regret their decision and feel that they did over-treat their DCIS, is the problem the fact that they were diagnosed with DCIS in the first place, or is the problem the fact that they may not have been given all the information they needed to make a fully educated decision?

The risk is identifying calcifications that turn out to be low grade DCIS is the risk of over-treatment. This can be reduced by providing better information about DCIS recurrence/mortality rates/risks. The risk in not identifying and testing calcifications is that someone might have invasive breast cancer or high grade DCIS that is almost certain to become invasive within a short time. For these women (and I'm one of them), the risk in not finding out about their calcifications for many years could be a premature death.

sunkistmi · March 2009

I know from my own experience that the views/opinions that are found at this website have given me much comfort. I wish I had found it before my first surgery, not that it would have changed anything. However, I may have done things in a little different order.

I had been a 'good' girl, checking my breasts every month for years. Because I was so lumpy, I had made a map of all the lumps so I wouldn't get freaked out if I found one. My mother had 3 sets of lumps tested with negative results until the fourth one came back cancer. It took her 3 years to die, very painfully. I am so thankful for the changes in treatment and diagnosises over the past 25 years. Anyways, as I went through menopause, the lumps disappeared, except for one in the right breast. It had always been one of the larger ones but it never hurt, moved or changed in size. I started having mammograms at 35 and was blessed with a child at 36 after being told we could not have children. Surprise!

Needless to say, I coasted year after year, getting clean reports from the drs. The lump I had mapped always was there but nothing was noted to be wrong with it. In February 2006, I received a call from my OB/GYN telling me that "something suspicious" had shown up on the mammogram and I needed to schedule a biopsy. OK, not a good feeling but still no huge emotional swing. My sister has had 4 needle biopsies and they have all been negative. All those feelings changed when I picked up my films and they had included the letter the radiologist had sent to the OB/GYN. He had written something to the effect of "high degree of probibility of malignancy". I remember falling to the floor sobbing.

We went in to see the breast surgeon my dr. recommended and she did a needle biopsy in the office. She said it was very unusual that a existing mass had basically "filled" with cancer. When it came back, it was diagnosed as intermediate grade DCIS. I procededed with the sentinal node biopsy, which was negative, and a lumpectomy; which turned into a partial mastectomy because she wanted to make sure she had gotten it all. The lump itself was almost 2" in diameter. She basically took from 9 to noon if you look at the breast like a clock. I'm not very big, maybe a small B, so I wasn't real happy with the way it looked. When it came back from pathology, it turned out to high-grade DCIS and 3 of the 4 margins were still not clear. More surgery. I could have had more taken out with radiation or simply go with a mastectomy. I chose the mastectomy with immediate DIEP reconstruction.

At the pre-surgical consult, they asked me if I considered having a bilateral mastectomy, because of the 20% chance of it coming back on the left side. Since the mammo had been clear, I told them I was going to be one of the "lucky" ones that was done. After all, I was told that there was an 80% chance that it WOULD NOT come back. Good enough for me. Had I found this site earlier, I would have insisted on an MRI of the left breast.

Surgery went wonderfully; faster than what they expected, only 3 1/2 hours, and I was working at a camp in Alaska 7 weeks after surgery. 2007 mammo - clear. Yeah!!!!! 2008 - not so clear.

Steriotactic biopsy showed intermediate DCIS. Because this time the area was much smaller, my BS wanted me to see a radiologist because I would have to have radiation if a lumpectomy was done. I saw the doc and listened to the pros and cons, weighing my options. However, due to the fact that it was the left breast and the heart would be exposed, however slight, the possible worsening of my RA and lupus and the chance of increasing the bone pain I already have, I decided against it. Plus, in my heart of hearts, I know it would have come back. For me, it would have been like keeping a ticking time bomb. I opted to have a mastectomy with immediate TUG reconstruction, since all my nice leftover tummy fat had been tossed in '06. Monday morning quarterbacking is so easy!

That surgery was a bit longer, 10 1/2 hours, than the DIEP but I was up and driving to my drs. appointment the week after getting out of the hospital. I am 6 1/2 months out of surgery and both breasts look very natural and feel like 'me'.

I know that the decisions I made were the right ones for me at the time I made them. In a perfect world, I would have done the bilateral back in '06 and not have had to have more surgery in '08. Each of us can only do what we think is the best for ourselves and our families. I totally agree with the statement that DCIS is supposidly the 'best' breast cancer but the treatment can be the most extreme, ie. mastectomy. I have really appreciated Bessie and the research she has done and posted on this site. I feel that, for the most part, discussions have remained respectful, although I do believe that lines have been crossed at times. However, when speaking of life and death, people tend to get a bit heated. I believe we are all in this race together, just on different parts of the course.

I apoligize for the length of the reply and hope I have not offended anyone. My thoughts and prayers are with all those sisters and their families facing this awful disease. God bless.

On course,

Wendy

sunkistmi · March 2009

I'm sorry Beesie for mispelling your name. I deleted the wrong letter!

peppopat · January 2011

I have not had surgery and don't plan to anytime soon. The only thing my agenda is to get an MRI and mammo. My palpable mass was 2cm but it shunk down to nothing (and my doctor couldn't locate it anymore) after being on Tamoxifen and special viatmin supplements for 6 weeks. With myself doing so well, why is the world would I want surgery other than on open biopsy, in time???

peppopat · January 2011

"Javagirl

I didn't proof read my response. I meant that once the biopsy is done, the needle has penetrated the duct which creates an opening."

Java,

That is a stupid myth. There in NO proof of that if you have done your research!

has anyone with dcis decided to wait

Comments

Categories