Anyone w/ DCIS choose NOT to have reexcision?

I guess that would be a very personal decision.  I did not take that route.  I had a lumpectomy, a re-excision and after still not getting clear margins I went for a double mastectomy.  I have two daughters and there is no way that I would take a chance with cancer and not being to watch my girls grow up.  That being said, I also have a very strong family history--my mother died at age 41 because of breast cancer, and her mother died at 47 because of breast cancer.  There was no way I was going to be the 3rd generation to die in my 40's because of this.  I got rid of everything to try avoid that from happening. 

I hear your concerns--but that wouldnt be the right choice for ME.  I think a second opinion is a great idea, from any surgeon.

BTW forgot to add.  If I were in your shoes, I'd very likely delay the mx and go for trying to have a child.  I had to do infertility treatments (only IVF was an option for us) starting at age 38.  We had both male factor and female factor infertility and our only chance of getting pregnant was invitro.  I remember so well the wish to achieve pregnancy and the fear that it would never happen.  I researched adoption and that seemed like such a long and uncertain path.  Anyway at age 38, as you I'm sure know, you don't have much time to play around with regarding fertility.  Sure we all know women who got pregnant and have healthy babies in their mid-40's but that is the rare exception. 

I liked the idea of an above poster who mentioned a consult with Dr. Lagios.   

Julia, it's true that some DCIS may never become invasive - or it may take years & years before it does become invasive - but this is not true of all DCIS.  Some DCIS is low risk (and these are the cases that we often read about being "over-treated") but some DCIS is very high risk. The factors that make it more likely for DCIS to become invasive are:

• The grade of the DCIS; grade 1 is lowest risk, grade 3 is highest risk, yours - at grade 2 - is in the middle.
• Whether or not there is comedonecrosis; it appears that you don't have this, which is good.
• The amount of DCIS; the larger the area of DCIS, the greater likelihood that there will be invasion or that the DCIS will become invasive more quickly; 1cm or less is considered small; over 4cm is large.  Your signature line mentions that you have 4cm of DCIS, so you are right on the line of having what's considered to be a large area of cancer cells.
• The age of the patient; at 38 you are very young and therefore you are high risk. This article explains that those under age 40 have an 83% greater risk of recurrence after surgery for DCIS: http://www.breastcancer.org/treatment/surgery/new_research/20091012.jsp

What this all means is that the risk of not having a re-excision will be very different for each of us.  Some women have made the decision to pass on a re-excision, but if they are very low risk, their situations are quite different than yours. Unfortunately for you, based on your pathology and age, it appears that your risk may be quite high.  

You mention that if you don't have a re-excision, the plan would be to "keep an eye on" the remaining calcifications.   For someone who is low risk, this approach might make a lot of sense.  If changes are noticed in the calcifications, at that point a re-excision can be done, and in all likelihood, the cancer cells will still be DCIS.  But for those who are higher risk, by the time changes are noticed on a mammogram or MRI, the cancer cells may already have evolved to become invasive cancer.  It's even possible that the invasive cancer may already have moved into the lymph nodes or beyond.  This isn't to scare you; these are just the facts.  Another fact is that for all women who have surgery for DCIS, even if they have clear margins, even if they undergo radiation, even if they take Tamoxifen and even if they have a mastectomy, if there is a recurrence, in 40% - 50% of cases, the recurrence will not be found until the cancer has already become invasive.  So watchful waiting comes with this risk.  And this risk is greater for those who are at high risk of recurrence and for those who have a pathology that indicates a greater likelihood that the DCIS may become invasive. 

Have you seen these two websites?  They talk about DCIS recurrence risk levels for various types of pathology.  While of course only your doctors can tell you what your specific risk level is based on your own pathology, these sites provide a general idea of the range that you may be looking at:

http://www.breastdiseases.com/dcispath.htm

http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2

On the Van Nuys scale, it appears that you fall somewhere in the range of 7 - 8 points.  Given your age, I'd lean toward the higher number, which would put your recurrence risk in the area of 26%.

According to The Oncologist website, someone who has a grade 2 DCIS with margins of less than 1mm and who doesn't have radiation, has a recurrence risk of 44%.  This website doesn't consider either the age of the patient (which would increase your risk) or the size of the tumor (which again would increase your risk).

In the end, you have to make the decision that you are comfortable with. If you are very comfortable living with risk and if you are confident that with regular screening you will be able to catch any changes before they become life-threatening, then it might be the right decision for you to pass on having the re-excision.  But before you make this decision, please be sure that you fully understand the risks that you face - based on your own pathology.  Talk to a few doctors; get a few opinions.  Then do what's right for you.

It sounds like you have really thought this through.  Having had to resort to fertility treatments and starting at age 38, I know how you feel.  And the flippant comments "You can always adopt" just made it all the more painful.  The fear that you may never have a child is all-consuming.  The nights were the worst.  At age 38, every month counts. 

The idea of dying from breast cancer in the year (2010) in which you are trying to conceive, that is just ludicrous or at least goes against all odds.  Obviously there is a chance of recurrence, obviously we can all eventually die from this disease.  However, your fertility does not wait for you, our chances dwindle rapidly as we approach age 40. 

I will admit this is a tough decision and one that only you and your husband can make.  I'm just trying to lend support to you with regard to the paramount goal - to have a baby - as I know that the quest for that supercedes everything, especially as our fertility declines.   

Dear CPM, I wish you all the best in your quest to have a baby. I'd check with a couple of doctors about super-healthy lifestyle and waiting... I guess DCIS is just too new a project for me to know enough about it, so I don't have an opinion about waiting (yet). I have heard over and over that it's a slow-growing, often "indolent" condition. 

I do want to say that as someone who went through a longish fertility battle and had a first baby at age 40 it's important to know what the underlying causes of your fertility issues are. (Do you know?) To cut to the chase, not a lot of point in carrying a pregnancy part-way, past miscarriage, but not near enough term. My first child was premature. From start until now, it's been a horrific battle. He's not a miracle child by any means, and seriously, I wish we had adopted. Everybody has a different story about everything, I know, and I don't mean to wound or be at all insensitive. If I hadn't gotten pregnant when I did, we would have worked on adoption.

That said, I did have an - uh - unplanned second pregnancy and I rushed to find a doc who would handle things differently. Took blood thinners all the way through and had a c-sec 2 weeks before due date. A perfect little boy, now a 9-year-old darling. My older son was in the hosp. a year. A darling boy also, some health ups and downs, and some severe developmental issues. So... I DO wish you all the best in your future motherhood, however it happens.  

Julia-

You had DCIS which was confined to your ducts. Since they have opened the ducts, is it still confined to the ducts? I honestly don't know and I wonder what others think.

I don't want to see you lose your breast. It has been hell on me but how can it still be confined to the ducts when the duct has been opened?

Bessie, do you know?

Julia, I've been waiting to see what you would do about this re-excision thing, and I saw this thread.  Otherwise, I wouldn't be posting on the DCIS forum...

I would like to follow up on 3 things that have been said.

First, Beesie (Hi, Beesie!) said this, in reference to your comment about "keeping an eye on" the remaining microcalcifications:  "You say that you have a "few more calcifications".  In fact for those who have dirty margins, until the breast tissue is removed and analysed under a microscope, there is no way to know if there are just a few more cancer cells or many more cancer cells."

What I want to add is this:  Not only is there no way to know how many more cancer cells might be in there, but there is also no way to know whether all the remaining cells are DCIS, like the bulk of the tumor, or whether some of them have already developed the ability to invade beyond the duct epithelium and are actually invasive cancer.  As Beesie pointed out, It is not unusual to have a tumor that contains both DCIS and IDC.  Mine did -- it was mostly IDC, with some "associated" DCIS.  Beesie's tumor was the other way around -- mostly DCIS, but with one tiny area of invasive carcinoma. What if the tumor tissue that's left in your breast contains some IDC, and isn't the DCIS you're assuming it is?

Next, you said this:  "I've already had surgery to remove nearly all of the DCIS."  It sounds like you believe that taking out most of a tumor is almost as good as taking out all of it -- kind of like pulling up "nearly all" the weeds in the garden. Cancer does not work that way.  Some researchers even think taking out most of a tumor, but leaving just a small part of it behind, or perhaps leaving metastatic foci behind, can stimulate the growth of the remaining tumor fragments.  No one knows for sure how that works, but it's something that has troubled cancer researchers and surgical oncologists for a long time.

Finally, you said this:  "I would plan to pump the diseased breast to "flush out" any remaining DCIS, ...".  You can't pump the cancer (DCIS) cells out with your breast milk.  They are attached to the lining of the milk ducts.  Heck, they are the lining of the milk ducts ("ductal carcinoma in-situ").  Yes, it is possible that a few of them might become detached -- torn loose -- with physical stimulation, and be "shed" into the milk. But most of them will not. 

Hurried analogy:  Think of DCIS cells like this --  They're kind of like a breast-duct version of bad skin cancer (melanoma) that has not yet invaded into the deeper layers of the skin.  That form of melanoma is called "Stage 0" melanoma, or "melanoma in-situ".  Melanoma in-situ is skin cancer, but it's not deadly unless the cells develop the ability to invade deeper into the skin.  The same thing is true for DCIS.  Melanoma in-situ cannot be removed with a vigorous shower spray, or with a bath scrunchy.  The way it's treated is to surgically remove the lesion, with good (0.5 cm) margins all around. 

You are facing a nightmarish decision. I recall that you've already spoken to several surgeons (oncologists) about your treatment.  I hope you can find someone who can integrate your needs and give you answers you find satisfying.  Unfortunately, when we're dealing with a diagnosis of cancer, we often find that none of the answers are satisfying.

otter 

Julia-- I want to urge you, like the others, to get a second opinion-- not just from a breast surgeon, but from an oncologist and your ob/gyn before you delay treatments in order to get pregnant.  There have been some studies that pregnancy fuels cancer cell growth. My oncologist said it's likely true though they are not sure exactly why-- the surge in hormones is obviously a factor.  Your doctors may want you to wait as well to give you your body time to heal. If you plan on fertility treatments you especially need to consult with all of your doctors so everyone is in the loop about your cancer. I'm convinced that the drugs I took to get pregnant contributed to my cancer and nursing  delayed detection because I didn't get a mammogram for  2 years. Until we know which DCIS will become invasive, it's too risky to delay treatment.  I can eat all the healthy things and exercise and take all the tumeric pills and broccoli sprouts, but I cannot control a toxic environment and  a water supply with weed killer and pharmaceuticals-- even my expensive filter system can't take those things out. There is only so much in our control.  I didn't have my baby until I was 41, my sister had hers at 43 (after multiple miscarriages), --so you do have time-- but a baby needs a healthy mom and you need to be around to love that baby.-- Sorry if I sound preachy-- I am just worried about you. Also, my doctor urged me to get tested for the BRCA mutations due to my age-- have you had that done?  -- Julie

Not to belabor a point but...

A physican friend of mine emailed me a study that showed that white women with cancer have a decreased chance of Alzheimers.  I emailed him back that above cited study about young women and recurrence rates, and told him I should be glad that I was over 45 when diagnosed.  He is an extremely evidenced-based physician.  Here is his response to my reassurance about the study (italics are from the study):

"I think this is SO disingenuous!

Local recurrence rates after lumpectomy and radiation therapy were 64% to 83% higher for those diagnosed before age 45 than among older women, Iwa Kong, MD, of the Sunnybrook Odette Cancer Center in Toronto, and colleagues reported here at the ASCO Breast Cancer Symposium.

These are relative rates. People do this all the time - especially the drug companies, and it's crap. Relative rates mean squat. What matters is this:

Overall survival rates were uniformly high at 97% to 99% at five years (P=NS).

If there is a one in a billion chance of something in group A, and an eleven in a billion chance of something in group B, there is a 1000% increase in group B. But the rate is still essentially zero (i.e., one in 100,000,000).

Aaaarrrrggghhhh!!!"

Just more stuff to confuse you Julia, but not my intent!  Take your time in this decision.  I with the others who have recommended second, third, fourth opinions from physicians.   

Julia,

I dealt with infertility using temp charts, clomid, tracking my temperature, you name it (except for IVF) until a nurse fertility specialist gave me prometrium after trying for 7 years to get pregnant,   I finally had my first child at the age of 34. I know the deep depression and how it seemed like everyone was pregnant around you.  I was actually pregnant with twins but lost one very early in the pregnancy.  I never had much time to grieve for that because I had to be happy with my girl who was strong enough to survive.  I waited so long.   I had stopped all birth control at the age of 26 in my quest to get pregnant.  Anyway, after my first daughter was born I never bothered with birth control.  When I was 38 my OB/Gyn sent me for a mammo for a lump that she felt during a routine exam.  Nothing was seen on mammo so I planned to go for my next mammo at the expected age of 40.  Lo and behold, I was pregnant before I had a chance to go and I wasn't even trying this time.  I was 41 when I had my second baby.  My baby girl was 17 months old when I found my lump.  I was 42.  So unexpected pregnancy at the age of 40, birth and exhausting breast feeding at the age of 41, and IDC breast cancer dx at the age of 42.  I went through so much turmoil with the bc diagnosis (totally unexpected and no family history) and not being able to hold or pick up my baby while recovering from so many surgeries (BLM, hysterctomy/oopherectomy, reconstruction implant surgery, exchange surgery, nipple surgery).  I feel like I lost a crucial bonding time period with her from about the age of 1 1/2 - 3.  Having a baby, especially as an older mom, is Exhausting and Very stressful.  But as was said above, a BC dx when you have a baby truly is magnified.  The fears of dying before your child is old enough to take care of herself or know you, etc., etc.   Yes, your baby is a joy to behold, but be realistic.  I would hope that you would get the surgery done and try to be disease free when you try to get pregnant.  I couldn't imagine wanting to get surgery while caring for a young baby or child.  It's very difficult on both the child and the mother. Your stress will more than double and if you do have invasive cancer perhaps that will fuel it's growth, no?   Best of luck to you on whatever path you choose.  I agree that I would seek out another opinion. Oh, and FWIW, I don't believe you know what caused your cancer anymore than any of the rest of us do!  I think you oversimplify it.  This whole situation sucks, but heck, it's great how healthy you've become since your dx!  I'd go for getting rid of the cancer and getting rid of the surgeries and then continue your quest to become pregnant.  You Do have time and it would be a hell of a lot easier having a baby and not having to deal with cancer and surgeries.

My physician friend explained to me the difference between absolute and relative rates.  The 20% recurrence rate in younger women vs. the 12% recurrence rate in women over 45, is an 8% difference, not a 67% difference. 

Here is his rather lengthy reply:

My argument wasn't that the difference isn't important. It's simply that it is disingenuous to use relative rates rather than absolute rates. (Drug companies do this all the time with efficacy of their drug versus side effects of their drug. Activase, for instance, is used to prevent disability after stroke. 20% of those treated with placebo end up with no or minimal disability. That increases to 31% when treated with Activase. So they advertise the drug as showing a greater than 50% increase in those who end up with no or minimal disability.

Meanwhile, of those treated with placebo, 0.6% will end up with bleeding in the brain. That jumps to 6.4% when Activase is used. You'll never hear them advertise that there is a greater than 1000% increase in the incidence of intracranial hemorrhage. They simply mention that the increase is 5.8%.)

All I'm saying is that the only thing that matters is the change in absolute risk. Look at the numbers you were given:

Here are the actual results quoted from this study:
12% of women aged 45 to 50 at diagnosis had a recurrence
19% of women aged 40 to 44 at diagnosis had a recurrence
20% of women younger than 40 at diagnosis had a recurrence
That means that out of 100 patients age younger than 40, 20 will have a recurrence. Out of 100 patients age 45-50, 12 will have a recurrence.Thus, the absolute risk reduction is 8 patients per hundred. That's the number that counts. The fact that the relative risk reduction is from 20% to 12% (that is, you started with 20%, and you dropped 40% (i.e., 8 of 20) to get to 12%) is meaningless.

As one further illustration, take the same exact numbers and look in the other direction. In other words, rather than looking at the decrease from 20% for younger women to 12% for older women, look at the increase from 12% for older women to 20% for younger women. That is a relative change of 8 out of 12, or 66% ,,, using the exact same numbers. That's because relative risk is misleading. All you should care about is the absolute difference.

No one is saying that the difference of 8 per hundred is (or isn't) significant. All I'm saying is that the numbers - whatever they mean - need to be presented accurately. It is an 8% difference, not a 40% or 66% difference. 

VinRobMom, I have been analysing and managing research studies (non-medical) for over 30 years so I understand the difference between relative results and absolute results.  The fact is that both are used all the time to explain all types of research findings and in most cases, both are important and relevant to understanding the results.  The key is to not misuse or misstate the results, whether using relative results or absolute results. 

Since virtually all research studies provide both relative and absolute results, it is irresponsible and disingenuous of your friend to criticize this study and to make a general statement that absolute results are "crap".  Saying that pretty much wipes out the results of every research study (medical and otherwise) that's ever been reported. 

This isn't to say that some researchers don't choose to present only relative results, because it makes the research seen more meaningful ("a 250% increase!" - but really only a change from 2 people to 5 people being affected) or only absolute results, because it lessens the impact of a serious problem ("5 additional people suffered heart attacks" - but really an increase of 267% with 8 people having heart attacks on the drug vs. 3 without the drug).  My examples, and your own examples, point out that both relative results and absolute results can be used to mislead. This is why it's important for a study to present both the relative results and the absolute results, so that both sets of results can be considered in context. The fact is that the breast cancer study which your friend criticized did exactly this, so there clearly was no attempt to mislead.  And the results from this study were stated correctly, contrary to what he suggested.  The increase in recurrence among those under the age of 40 vs. those over the age of 45 was 83%, not 8% (as your friend states).  You're right that the absolute difference in recurrence was an 8 point difference (8 points, not 8%; in stating research results, the term percent difference always refers to the relative difference); another way to comment on the absolute difference would be to say that 8% more women in the under-40 age group were diagnosed with a recurrence.  Around here we are never so precise and careful in how we state research results, but if we were, that's how the results should be stated.    

As for the results themselves, I strongly disagree that the 20% and 12% results are "meaningless".  In fact, they are extremely important.  For someone who is under 40, the fact that 8 more women out of 100 (vs. those over 45) will have a recurrence isn't particularly important.  What is important to someone under 40 is the fact that this study showed that 20 women out of every 100 will have a recurrence.  Similarly, for women over 45, I don't think it matters much that 8 fewer women out of 100 will have a recurrence.  The information that these women need to make their treatment decisions is the fact that 12 out of every 100 women in their age group will have a recurrence.  The absolute difference in the results, the 8 point difference, is not relevant to women in either group, however it is relevant to their doctors and to medical researchers who work on treatment guidelines.

As for the relevance of the relative changes, the reason these are important is because not everyone fits the exact criteria of the women in the study.  For women with a different diagnosis or for those who had different treatment, the 12% and 20% recurrence rates, and the 8 point difference in recurrence between the two age groups, are irrelevant.  But the 83% increase in recurrence rate is still relevant (or would be assumed to be relevant until further research is done to confirm or deny this).  So if the base recurrence level for a group of women aged 45-49 with a different pathology is 18%, this means that women under the age of 40 with this type of pathology may have a 33% risk of recurrence.  This highlights why relative changes are important and do need to be presented.

This discussion has taken this thread way off topic, which I apologize for. This isn't the place for a course in research.  I responded initially to the concerns raised about the research because I didn't want anyone (particularly Julia, who has an important decision to make) to think that the research stating that recurrence risk is higher for younger women was not good research or that the results were not meaningful, as seemed to be implied  This fact about the risks that younger women face unfortunately have been proven over and over again.

Julia, as I was previewing my post, I just saw your new post.  If you really don't care about the cosmetic results for now, could you not go back to the surgeon to suggest a re-excision rather than go down the path of a mastectomy?  Even though you missed out on the surgery last week, I think this approach might still be quicker.

Edited to add: VinRobMom, should your friend want to continue this discussion/debate, may I suggest doing this via private message so that Julia's thread stays on topic?  Thanks!

Julia-

I totally agree with you about diet. I am doing something similar to you as I have given up dairy, all meats and most sugars and refined carbs. It is my opinion (after reading many books including The China Study) that you can make cancer dormant but you don't make it disappear with the lifestyle changes.

If you decide to have a reexcision and you are concerned about holding your baby (and I feel in my heart that you WILL have your miracle baby) why not have the surgeon do a skin sparing and have recon later? I am in no way suggesting that you have a mastectomy but there is a part of me that is worried that the hormones during pregnancy might trigger something.