“No Radiation after a Mastectomy”… and other misconceptions

Beesie

I've been catching up on the discussions on the board after being off for a few days.  In at least 3 threads, I've read the comment that "no radiation is required for those who have a mastectomy".  I get concerned when I read this because I know this is a factor on which a lot of women make their ‘lumpectomy vs. mastectomy' decision.  And while it is usually true that those who have a mastectomy for DCIS won't need radiation, there is no guarantee - sometimes radiation will be recommended.  Often it can't be known with certainty whether radiation will be required or not until after the mastectomy is done.  If the margins are too close, particularly against the chest wall, then radiation might be suggested.  Additionally, if it happens that the final diagnosis is not DCIS (i.e. it turns out that some invasive cancer is present) and if there is lymph node involvement, then radiation is very likely to be required. 

In all likelihood the women who've made the comment about "no radiation after a mastectomy" are relating their own experience and without doubt they are trying to be helpful.  But the experience of one woman might not be the experience of someone else.  And in the case of whether radiation is necessary after a mastectomy, while most of the DCIS women here who are trying to make the difficult ‘lumpectomy vs. mastectomy' decision probably won't need radiation if they have a mastectomy, for some of you, radiation will end up being recommended.

While I'm writing about misconceptions and misinformation, here are some others that I often see in this forum (and others).  My information is based on what I've learned from my doctors, from others on this site and from doing a lot of reading up on breast cancer, and DCIS in particular, since I was diagnosed. While I usually provide url links and quotes from articles and studies to support the information I provide, I won't do that here since I suspect this will end up being too long even without that (yup, I do tend to be verbose).

 - DCIS is Stage 0 breast cancer - always, whatever the grade, whatever the size.  DCIS is always non-invasive; there is no such thing as "invasive DCIS".  DCIS can evolve to become invasive cancer but at that point, the diagnosis changes to IDC.

 - A fairly common diagnosis is "DCIS with a microinvasion".  This diagnosis is actually a subset of IDC;  "DCIS with a microinvasion" is Stage I - it is the earliest possible diagnosis of invasive cancer. 

- It is very common to have DCIS and IDC together.  When that happens, the diagnosis, staging and treatment plan is based on the size and pathology of the invasive cancer.  The DCIS needs to be removed but other than that, nothing else needs to be done for the DCIS - it will be adequately treated by whatever treatments are given to address the IDC.

- If you have lymph node invasion, you do not have DCIS.  DCIS cancer cells cannot travel to the nodes or move into the bloodstream.  The cancer cells must evolve to become IDC before that can happen.  It can sometimes (rarely) happen that a tiny amount of  invasive cancer is hidden in the middle of an area of DCIS and isn't discovered when the breast tissue is analysed; if this invasive cancer results in lymph node invasion, it might appear that the diagnosis is "DCIS with lymph node invasion" but in fact the medical assumption will be that there was invasive cancer present (but just not found).

- Those diagnosed with DCIS (or early stage invasive cancer) usually will not get a CT scan or PET scan (however these scans are quite common among those who have more advanced BC).

- If you have pure DCIS, you will not need chemo.  Chemo is a systemic treatment - it is given to address the risk that cancer cells may have moved into the body (i.e. distant recurrence/mets).  Chemo is not given to treat cancer that is in the breast and DCIS, by definition, is confined to the breast - that's why chemo isn't necessary.  If it's found that you have a small amount of invasive cancer (a microinvasion) along with your DCIS, according to current treatment guidelines, you still won't be given chemo because the risk of distant recurrence is considered too low to warrant such a toxic treatment.  If it's found that you have a larger amount of invasive cancer, then chemo might be required, depending on the size and pathology of the invasive cancer.

- If you have pure DCIS, you do not need to have an oncotype test.  This test is used to determine whether chemo is advisable or not.  Since chemo is not given for DCIS (see above), the oncotype test isn't necessary for those who have pure DCIS.

- HER2 testing is sometimes done on DCIS but at this point, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS so don't worry if you don't know your HER2 status.  While HER2+ invasive breast cancer is considered to be very aggressive, there is little understanding of what HER2+ status means for those with DCIS and there are no special/different treatments for those who have HER2+ DCIS. What is known is that a fairly high percentage of DCIS is HER2+ (a much higher percentage than for IDC) which suggests that as DCIS evolves to become invasive, in some cases HER2 overexpression may be decreased, with the cancer changing from being HER2+ (as DCIS) to HER2- (as IDC).  For this reason, for those who have DCIS with a microinvasion who are HER2+, it is important to know if it is the DCIS that is HER2+ or if it is the microinvasion. 

- A sentinel node biopsy is not required for those with pure DCIS.  For those with high grade DCIS, there is a significant risk that some invasive cancer might be found in the final pathology, so often an SNB will be recommended. This is particularly true for women having a mastectomy (because an SNB cannot effectively be done after a mastectomy) however sometimes high grade women having a lumpectomy will also have an SNB.  For women who have a low risk that invasive cancer may be found along with their DCIS, current treatment guidelines suggest that an SNB is not necessary even if they are having a mastectomy. 

- Lymphedema is possible, even after an SNB.  Approx. 3% - 7% of women who have SNBs develop lymphedema.  Lymphedema can develop anytime in your life after you have nodes removed and once it develops, you will have lymphedema for life.  This is an important consideration for anyone having an SNB for DCIS (particularly lower grade DCIS). 

- If you have a mastectomy, you will lose all feeling in your breast.  If you have a skin sparing mastectomy, you may regain some feeling on your skin but this is not the same as having feeling in your breast.  Think of what you would feel if you had a baseball inserted under a layer of your skin - the only feeling you would have in that area is a surface feeling.  While all the natural breast sensation is gone once the breast tissue is removed and the nerves are cut, there have been studies that show that a percentage of women develop phantom feelings that seem like real breast sensation.  (In my case, when I get chilled, it feels like my nipple hardens, except I don't have a nipple.).  While some phantom sensations can be pleasant, with a mastectomy there is also a risk that you may develop real or phantom pains.  All this is to say that a mastectomy is an amputation and it comes with all the possible side effects of any amputation.  And a reconstructed breast cannot develop real sensations.  This is not to discourage anyone who wants to have a mastectomy; this is just to lay out the facts.

- It is not true that only 20% (or 25% or 40% or whatever %) of DCIS will ever become IDC.  The fact is that nobody knows what percent of DCIS will eventually evolve to become invasive cancer.  Studies of low grade DCIS have suggested that perhaps only 20 % - 40% may become invasive over 5 to 10 years but other studies have shown that low grade DCIS, left untreated, can evolve to become invasive cancer after 25 or 30 years.  For those with high grade DCIS, it is believed that the percentage that will become invasive is very high but because high grade DCIS is almost always removed and treated, there is no way to know what percentage would become invasive if allowed to progress naturally.  It is known that after treatment (i.e. when the DCIS is surgically removed), if there is a recurrence, in approx. 50% of cases the recurrence will not be found until the DCIS has progressed to become IDC. 

That's it for what's top of mind.... I hope this is helpful to those of you just grappling with a DCIS diagnosis.  And I welcome anyone who is educated and experienced with DCIS to add their own points (and correct any of mine, if I've misstated anything).

Edited Feb.20th 10:45 am to add:

- Recurrence risk after a lumpectomy for DCIS is based on your personal pathology and can't be known until after surgery.  So don't assume that what your risk will be the same as anyone else's. The key factors that go into the determination of one's recurrence risk are size of the surgical margins, size of the tumor/area of DCIS, grade of tumor, presence (or lack of presence) of comedonecrosis, hormone status and age of patient at time of diagnosis.  What this means is that someone who is older who has a small, low grade DCIS tumor and good surgical margins might have a recurrence risk that is as low as 3% - 4% (even without radiaton) while someone who is younger who has a larger, high grade tumor and poor surgical margins could have a recurrence rate that is as high as 60% (prior to radiation). Because the size of the margins and the size of the tumor aren't known until after surgery, it's impossible to know for sure what your recurrence risk will be until after the final pathology report is available.

- For those who have pure DCIS, the recurrence rate after a mastectomy is generally in the range of 1% - 2%.  There have been many studies over many years that have confirmed this recurrence rate after a mastectomy (Full disclosure: There have also been very rare studies that have shown a higher rate, in the range of 7% - 10%).  Recently a new study has shown however that for those who have negative or very tiny surgical margins after a mastectomy (1mm or smaller), the recurrence rate might be higher.    

Edited March 6th 9:40 am to add:

- DCIS cancer cells, if moved out of the milk duct, will not become invasive and start to spread.  DCIS cancer cells are pre-invasive. They have most of the characteristics of invasive cancer cells but they require one final molecular change to the myoepithelial layer of the cell to become invasive cancer.  What this means is that if you have a biopsy or surgery that releases some DCIS cancer cells into the open breast tissue, you don't have to worry that these cells will become invasive cancer. As DCIS cancer cells, without having had this molecular change, they will not be able to thrive and grow and multiply in the open breast tissue.

Edited March 15th 7:10 pm to add: 

- DCIS cannot recur in the contralateral (opposite) breast so a diagnosis of DCIS does not put you at any risk of "recurrence" in the other breast.   The fact is that it is very unusual for any breast cancer to recur in the other breast.  For breast cancer to recur in any location outside of the originating breast, what happens is that some invasive (not DCIS) cancer cells leave the breast, either through the lymphatic system or through the bloodstream, and then settle elsewhere in the body.  This is how metastisis happens.  When this happens, some of the usual places that breast cancer cells move to are the bones or the liver.  It is very unusual for cancer cells to move from one breast through the lymphatic system or bloodstream and then land in the other breast. This just doesn't happen very often.  So even invasive cancer rarely recurs in the contralateral breast.  As for DCIS, DCIS cancer cells are confined to the milk ducts; they cannot move into the lymphatic system or the bloodstream.  While DCIS might spread out within the ductal system of the breast, DCIS cancer cells will remain within the originating breast.

- A diagnosis of DCIS, like any diagnosis of breast cancer, increases the future risk that you might be diagnosed with a new primary breast cancer, in either breast.  While DCIS cannot recur in the contralateral breast, any diagnosis of breast cancer, even DCIS, is believed to increase the future risk that you might be diagnosed again.  This second diagnosis is not a recurrence, but is a new primary breast cancer, unrelated to your first diagnosis.  How much your risk goes up vs. the average women (who hasn't been diagnosed with BC) depends on your personal health history, your family history of breast cancer, and your age.  So it is important to talk to your oncologist to understand your risk of being diagnosed again - it is different for each of us and it might be higher than you expect or it also could be lower than you expect and this can impact decisions on hormone therapy and mastectomies. 

dsj

Wow.  Thank you so much for doing this.

olivia218

WoW lots of information - so what does it mean that I do not have clear margins after a mastectomy it is less than 1mm in the post and anterior?

Beesie

Olivia, your situation is exactly the type of situation where sometimes radiation will be recommended.  It used to be that even with margins of 1mm or less, after a mastectomy for DCIS, radiation wasn't given.  But recent studies show that the recurrence rate in cases where the margin is that small is quite a bit higher than the usual recurrence rate after a mastectomy for DCIS (the usual recurrence rate being in the range of 1% - 2%).  That's why these days radiation often is recommended when margins are that small.  Over the past year there have been several women on this site who've been in that situation who have had radiation.

I had a 1mm anterior margin.  Radiation was not recommended (this was 4 years ago, before the recent studies were available) but when I had my surgery to replace my expander with my implant, I asked my PS to remove a bit of the skin on both sides of the scar line - that's where I had the close margin.  So my incision isn't as smooth as it otherwise would be, but I'm comfortable that I addressed the issue of the close margin. 

dsj

One question, if you can.  You said

 It is known that after treatment (i.e. when the DCIS is surgically removed), if there is a recurrence, in approx. 50% of cases the recurrence will not be found until the DCIS has progressed to become IDC. 

 This is a new statistic for me. Do you mean 50% of all DCIS or 50% of high grade DCIS?  (I wasn't quite sure from the context.)  Is there any sense of why it wouldn't show up as DCIS, but only after becoming IDC?  Also, if it's easy for you to do, can you provide a citation for this statistic?

 Thanks so much--dsj

Beesie

It's 50% of all recurrences, whatever the original grade.  But of course the recurrence rate is higher for high grade DCIS. 

This percentage has been confirmed by many studies.  I'll try to find some of the actual studies tomorrow (no time today), but for now, here are a few reliable reference points:

"....with 50% of those recurrences being invasive carcinoma" 

"Similarly, of the 1,010 patients enrolled in the EORTC-10853 trial, mammography detected lesions in 71% of the women. At a median follow-up of 10.5 years, the overall rate of in-breast tumor recurrence was reduced from 26% to 15% (P < .001) with a similarly effective reduction of invasive (13% to 8%, P = .065) and noninvasive (14% to 7%, P = .001) recurrence rates"

Both of these quotes are from: http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

"It should be noted that up to 50 % of recurrences of DCIS is associated with invasive disease." http://www.surgical-tutor.org.uk/default-home.htm?tutorials/dcis.htm~right

"If recurrence occurs, the chance of the cancer being invasive is approximately 50%."  http://www.dcis.info/treatment-recurrence.html

"If breast cancer does come back after earlier DCIS treatment, the recurrence is non-invasive (DCIS again) about half the time and invasive about half the time. "  http://www.breastcancer.org/symptoms/types/dcis/

otter

Nice job, Beesie.

otter (lurking on the DCIS forum) 

olivia218

Beesie,

Thanks for the information. The surgeon wanted to do another sonogram the same day I went to hear my path results but I was not up for it. So in a few weeks, The surgeon looked a little shocked at the path report, although he said there was more there than the two biopsies initially indicated. 

sunnyhou

I am well on my way to moving on from this (exchange last week), and I read this and it helped me. Thank you for posting this. You are a true gem to do this. There is so much confusion when it comes to DCIS and laying it out like this helps tremendously. Again and Again.

thank you. ..

prayrv

Beesie,

Thank you.

T.

Beesie

Thanks all!

dsj, here are some studies about DCIS recurrence rates that provide information about the percent of recurrences that are invasive vs. the percent that are DCIS:

• First is the Tamoxifen study (NSABP B-24), which included 1,802 women who were followed for an average of 7 years.  Of those women who had a recurrence, among the group who had lumpectomies + radiation, 45.6% had an invasive recurrence.  The good news is that among the group who had lumpectomies + radiation + Tamoxifen, only 39.7% of the recurrences were invasive. http://www.rxlist.com/nolvadex-drug.htm#ad (see page 6, about 1/2 way down)
• Next is a study of 1,672 women in France who were followed for approx. 11 years. Of the recurrences, 57.7% were invasive. "There were 213 local recurrences, 90 in situ and 123 invasive. These were diagnosed at a median of 55 months after mastectomy, 37 months after conservative surgery and 53 months after conservative surgery and radiotherapy.....Among 306 women who had mastectomies for DCIS, five had local recurrences (1.6 percent), all invasive. Two of the five (40 percent) recurred with metastases.  Among 403 women whose DCIS was treated with conservation surgery, 105 had local recurrences (26 percent) -- 52 were in situ recurrences, and 53 were locally invasive. Five of the 53 (9.4 percent) were metastatic. And among the 812 women who had both conservation surgery and radiotherapy for initial DCIS, 103 (12.7 percent) had local recurrences, including 38 in situ and 65 invasive. Eleven of the 65 (16.9 percent) were metastatic."  http://www.docguide.com/news/content.nsf/news/8525697700573E1885256C9200597DA3
• And here is information from NSABP-B17, a study of 814 women with a median follow-up time of 12 years.  "The cumulative incidence of non-invasive IBTR (ipsilateral breast tumor recurrence) as a first event was significantly reduced with radiation from 14.6% to 8.0%.  More importantly, the cumulative incidence of invasive ipsilateral recurrence was also significantly reduced from 16.8% to 7.7%."  http://www.clinmedres.org/cgi/content/full/1/4/309

There are more studies but I think this confirms that it's pretty consistent that approx. 50% of DCIS recurrences are not detected until the cancer has evolved to become invasive.  It does appear that radiation, and particularly Tamoxifen, are both effective at not just lowering the overall rate of recurrence but reducing the percent of recurrences that are invasive.

dsj

Just to be sure I'm reading your right:  the risk of recurrence after lumpectomy and radiation is 15%--about half of which reoccur as DCIS and half as IDC. But that is across margin size, tumor characteristics and age of diagnosis, right? Individual risks will vary according to those variables, and you can't calculate that risk til after the lumpectomy.  I hope I am understanding this correctly.  (This is higher than I thought; i.e., the doctors I've spoken to have not given me that 15% statistic; or at least I didn't actually hear them say it.)   thanks again.

 Edited to add, I hadn't seen your more recent post when I wrote this.

Beesie

Yes, you've got it right.  Depending on the study, I've seen average recurrence rates for DCIS, after a lumpectomy + radiation, in the range of 12% - 15%.  But your individual risk depends entirely on your own pathology and age.  For those who have a small amount of low grade DCIS and who have good surgical margins (10mm or more), the recurrence risk can be as low as 3% - 4%, even without radiation.  For those who have a large amount of high grade DCIS and who have small surgical margins (1mm or less), the recurrence risk can be as high as 40% - 60% (prior to radiation).  So until your surgery is done, no one can tell you what your recurrence risk is.  Because of that, it's not surprising that none of your doctors has mentioned the recurrence rate of 15% because that number isn't meaningful at all to you. 

dsj

Heartfelt thanks for getting back to me so quickly.  dsj

Beesie

You're welcome!  Actually, your question made me think of something else to add to the list.  Often it's not understood that recurrence risk is very personalized and can't be known until after surgery. I'll see if I can edit my original post to add this.

pk0199

Once again Beesie, your information is great, thank you so much for all the research you do and most importantly thank you for always sharing!

redsox

Great thread, Beesie!

I would emphasize that "recurrence risk is very personalized".  While the factors cited are generally the most important, i.e. margin width, tumor size, grade / comedo presence, age of patient, other factors can affect risk.  They may also affect the likelihood of invasive vs. DCIS at recurrence. Because these factors may be unusual or occur in unusual combinations, there may be no good data to provide reliable estimates.  Clinical trials may exclude patients with unusual characteristics or the numbers of patients with those characteristics may be too small for statistical analysis.  Other factors can include surgical techique, family history, patient history or environmental exposure, other underlying risk, abnormal non-cancer cells that are risk factors, location of tumor, symptoms and their consequences, etc. 

These sort of factors can mean that different patients with seemingly similar profiles actually have quite different risks.  Of course, risk rates are just estimates, based on the best interpretation a doctor can make using all of the information s/he thinks is relevant for that patient.

dsj

redsox, that's really interesting.  I just remembered that the radiation oncologist I saw yesterday (she's also a researcher who participated in some of the early "balloon" therapy tests) said something along the lines of "risk of recurrence is lower with a good surgeon" (or words to that effect--I THINK; kind of hard to reconstruct that part of the conversation).  I guess that's in reference to margins?  Or are there other ways in which surgical technique and expertise come into play?

The other idea I keep returning to is something Beesie said on some other post:  that the data are all about people who were diagnosed in the past.  That is, 10 year survival rates measure what happens to people who were diagnosed and treated 10 years ago.  One reason people think DCIS diagnosis has increased so much recently  is better screening equipment.  So it would seem that people being diagnosed today are being caught earlier.  Plus we now have better treatment options. So we don't really know what OUR our long-term data will be; we are only extrapolating from past data.  Does that make sense?

swimangel72

Great info Beesie - thanks so much! (I'm also a lurker on the DCIS board due to a cousin and a friend who both had mx's due to DCIS.)

dsj - my breast surgeon told me the same thing your radiation oncologist said (and yours is the first post I've read here at bc.org that addressed this fact) - that my risk of recurrence would be much lower with him due to his expertise and experience. At the time I thought he was just egotistical, but when I did my research on this surgeon, I realized how experienced he truly was and I was happy to have found him. Unfortunately the same couldn't be said of my original PS, but I won't get into that long story. And yes - I agree also with your last statement - that, even with low-grade IDC - our risk of recurrence can only be extrapolated from past studies - as someone once said, "utlimately it's all a crap shoot!"

Beesie

Shortly after I was diagnosed I remember looking into the issue of whether or not a surgeon's experience level impacts results.  I was surprised to find that there were a number of studies over many years and from many different countries that all showed the experience does count. 

Here's info from study: "Results in analysis of breast cancer surgery outcomes also differed between surgeons. There were significant differences observed in operation time (mean 72 - 83 minutes), number of lymph node dissected (12 - 15), surgical site infection rate (3,5% - 10,9%), length of postoperative stay (9 - 12 days) and local recurrence rate (7,9% - 17,6%). "  www.ispub.com/./surgeon_related_quality_in_colorectal_and_breast_cancer_surgery.html -

Here's an older study from Scotland: http://www.bmj.com/cgi/content/abstract/312/7024/145

And here is an article that discusses this:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2266785/

I can't find the studies that I remember reading back when I first looked into this but I will keep looking.  I know that there was also another study on this just in the past year or so. Can't find that one yet either.

Something that's important to understand in this discussion is that size of margins and re-excision rates are not the most important measures here.  If you have a surgeon whose re-excision rate is very low, what that means is that this surgeon takes a lot of breast tissue when he/she operates - probably more breast tissue than necessary, resulting in poorer cosmetic results for his/her patients.  A good surgeon tries to walk the line between removing too little tissue and removing too much.  Because cancer cells are microscopic, the only way that the surgeon knows how much tissue to remove is by carefully reviewing the films (mammo, ultrasound, MRI) prior to surgery.  Once in the operating room, the surgeon is in effect operating blind - he or she can't see how wide the margins are or if there are any cancer cells left at the margin.  It's all a guessing game based on what was seen on the films. An experienced surgeon will be able to make a more educated guess on how much breast tissue to remove, but as we all know, mammos, ultrasounds and MRIs are far from precise so it's expected that even the best surgeons will have to do re-excisions.  So, if it turns out that you need a re-excision, this is not a reflection on the quality of your surgeon.  The fact is that you don't want a surgeon who nevers needs to do re-excisions because he/she is likely the more inexperienced surgeon (who just takes out the largest possible chunk of breast tissue).

So it's not margins or re-excision rates, but one area where experience really does count is with an SNB - there are lots of studies on this.  You do not want an inexperienced surgeon doing your SNB because this is tricky surgery - it's not easy to find and remove the correct node. Additionally, for those having SNBs, I suspect that an experienced surgeon is less likely to cause contamination of the nodes.  Also, as pointed out in the quote above, experience counts when it comes to infection rates. Just guessing, but I suspect that experience also counts for those having mastectomies, since an experienced surgeon probably leaves behind less breast tissue (against the chest wall and/or the skin). 

So yes, find yourselves a surgeon who does a lot of breast cancer surgeries.  But don't worry about what the surgeon calls himself - some use the title "General Surgeon", some use "Surgical Oncologist", some use "Breast Surgeon".  It's the training (specialization and fellowships) and experience that count. 

IronJawedBCAngel

Something I have heard discussed in speculation at some breast cancer symposiums is the potential that our doctor's attitude about DCIS may have impact on women adhering to their followups and thus finding a recurrance before it becomes invasive.  The doctors who have the attitude that it is "just" DCIS do not recommend as thorough a follow-up schedule as the ones who take it seriously.  I had some experience with this about a year after I had been diagnosed.  I live in a town about 3 hours from where I had my treatment and was considering finding a more local oncologist.  My original onc and surgeon had done a very good job of discussing risk factors for recurrence and that some might feel we were being "overaggressive" doing rads and tamoxifen.  The "new" doctor I went to for a consult, highly recommended by some of the local survivors, literally patted me on my head and made some comment about "young lady, you just had DCIS, you only need to be seen once a year". I made the decision to stay with my original oncologist and follow my original follow up plan. I have the theory that I need to prepare for the worst, but hope for the best.  If we educate ourselves, know our bodies, and advocate for ourselves by being proactive, we have every hope of living long full lives.  The numbers and stats really don't mean alot because we don't know whcih side of the numbers we are going to fall, and it is something we really have little control over.  Age is the number one risk factor for breast cancer, and that risk increases with each year we live.  I hope to live to a grand old age, but appreciate each and every day.  Lumpectomy or mastectomy, there are no guarantees, so just try to focus on having the best quality of life you can.

Beesie

Jenn, what you said about a doctor's attitude towards DCIS affecting the result makes so much sense.

I also agree wholeheartedly in your approach - prepare for the worst but hope for the best. I think it's important to understand what might happen but there is no point in obsessing about things we can't control or worrying about worst case scenerios that hopefully - and most likely - won't ever happen. That's how I've approached this too.

As for numbers and stats, I understand what you mean. We are individuals, not statistics, and for each of us, the result will be either 0% or 100%. Whatever the stats say about what percent of women will be found to have some invasive cancer after a biopsy diagnosis of DCIS, for each of us, we'll either have a final diagnosis of pure DCIS or we'll be found to have some invasive cancer. There is no in-between. Regardless of the stats on recurrence rates, each of us will either have a recurrence or we won't. It's not possible to have a "12% recurrence". And even you only have a 1% - 2% chance of recurrence (as in my case, having had a mastectomy), it doesn't mean that you won't have a recurrence; in this example, 1 or 2 women out of every 100 will have a recurrence and any one of us could be that woman.

Still, I don't want to leave the impression that numbers and stats aren't important. I think stats are very important, as they form the base on which we understand our diagnosis and make our treatment decisions. Given a choice between being in a group of 100 women where 95 - 99 of the women will survive BC or being in a group of 100 women where 55 - 65 of the women will survive BC, all of us will pick the first group. That's the approx. difference between being diagnosed with DCIS / DCIS w/ a microinvasion vs. being diagnosed as Stage III.  Of course, even being in the DCIS group, any one of us could fall on the wrong side of the odds, but that doesn't make the two situations the same. For someone with DCIS, the statement that "(i)f we educate ourselves, know our bodies, and advocate for ourselves by being proactive, we have every hope of living long full lives" is very likely to be true. But for someone with more advanced breast cancer, that statement is less likely to be true - the stats may come into play, regardless of what that individual does. Another example: Given a choice between being in a group of 100 women where 30 will have a recurrence or a being in a group of 100 women where 7 will have a recurrence, most of us would pick the second group. That's how we and our doctors make our treatment decisions and it's all based on stats. So numbers and stats are critical to many of the decisions we make, whether we admit it or not.

To me, when talking about numbers and stats, I think it's important to understand what they mean, understand when they are important and need to be considered, and understand when it's best to simply put them out of our minds.

3monstmama

Thank you Beesie for the very helpful post.  I am one of those people who was told that the treatment would be either lumpectomy AND radiation or mastectomy and no rads.  It is helpful to hear that even had I chosen the mastectomy, I might still be facing the evil rads.  And it it also helpful to read the other information about reoccurance.

I have heard the part about experience before.  It was one of the things that made me glad that I switched surgeons.  The first one was nice but definitely less experienced. 

A good friend with a daughter in med school made an excellent point to me in an email--basically that analyzing journal articles is something 3d year med students do and that professionals are better equipted to deal with the analysis than I am.  I am not against educating myself but there is no way I can gain the same amount of knowledge about my cancer and my treatment as my doctors by reading all these articles.   I am thinking that finding a surgeon who feels "right" to you as well as an oncologist who explains and is patient is equally important to the time spent reading articles.  I am very glad I took the advice to find another opinion.

hliu_2001

Thanks Beesie and all of you for these information, which are so helpful when making after sugery treatment options and further follow up cares!

I had the left mx 2 weeks ago and just received the pathology result yesterday. My final diagnosis is grade 3 DCIS, and the closest margin is 2 mm (do not quite understand why the margin is still needed for mx, since the entire breast has been removed?), based on your experience and the information you have, is this margin a small margin? do I need to discuss this with oncologist for further treatment options?

I am in the process of searching some oncologists who are specilized in breast cancer to discuss further treatment options. I have searched some information online for Tamoxifen treatments options, but most of cases are referring to pts with lumptoctemy with radia, has anyone with mx also gone through Tamoxifen treatment?

olivia218

hliu_2001

I had a left mx 3 weeks ago tomorrow and received the path reports with the microinvasions confirmed as invasive so I guess that is going to be the new focus and my margins were 1 mm. I have an appt on March 11th with the oncologist to determine if another surgery is in the list of options, radiation or are we just going to address the invasion?  I did not get it either but I understand now that it is possible to not have a clean margin even after a mx.  I was shocked as well.

Olivia 

sherryb

Hi Beezie,

It sounds like you have really done your homework. I was diagnosed with DCIS in early Jan and had lumpectomy/breast reduction Feb 17. Here is my concern: My Mammo showed 2 areas of microcalcifications, one was benign and the other DCIS. I was truly tormented as to what to do, when the Plastic surgeon suggested a breast reduction, that way more tissue to test and test from both breasts, since the other breast showed questionable areas to follow in 6 mo. I felt a sigh of relief, until yesterday. I got the path report back, it showed the original DCIS, and the area that was benign was positive, plus they found another location, so that made 3 DCIS in the same breast. I too struggled with bilateral mastectomy, then at least single mastectomy.

I was told by the surgeon had this information been available, they would have suggested Mastectomy, since the breast would have been considered unhealthy. Now, I am faced with going back to have a mastectomy or continue down this road with radiation. The surgeon said that there were clear margins and the outcome will be the same, either way I choose to go. I am so greatful I did listen to my gut, it was telling me that just lumpectomy wasn't enough, my gut was correct. 

My questions are:

1. Will radiation truly kill off anything that wasn't found?
2. I also have orthostatic Hypotension, which plays havic on my system, and I fear that radiation will make me exhausted, not just the little tired I hear from others.
3. So my dilema is single mastectomy and deal with recovery or do radiation and possibly face low energy from anywhere from several weeks to several months?

I am not directly asking for you to tell me what to do, but in your experience (personally and research you have done), if you could help with listing the pros and cons.

I am glad this forum is available, I haven't joined any support groups and I have limited resources. Oddly my friends that I thought would offer support, have pulled away and a few people I never would have thought would be any support have turned out to helpful. I also only have my husband and daughter, but I haven't really showed them my fears, it's too hard to see their reaction. So, once again thanks in advance, for your response and others who have been brave to show their fears and list their questions. It's good to know you're not alone.......        

 

Beesie

hliu, sorry for taking a while to get back to you.... I hadn't been able to check the board for a few days. To your question, 2mm is a small margin but for those who have a mastectomy for DCIS, it is considered to be an acceptable margin.  The recent studies that I mentioned in my earlier post that have found higher recurrence rates after mastectomies for DCIS all referred to margins of less than 2mm.  So you should be fine - radiation shouldn't be necessary.  Still, I would advise that you see an oncologist.  Based on my experience, and that of others who've come through this board, Tamoxifen probably will be discussed.  With a 1%-2% recurrence risk, the real benefit of Tamoxifen is not a reduction in your recurrence risk, but as protection for your remaining breast.  All of us, once diagnosed one time, have a higher risk to get BC again - a new primary breast cancer diagnosis unrelated to the first occurrance.  In my case, although my oncologist explained that I could take Tamoxifen, he actually recommended against it.  I was surprised about that but after doing a ton of research, I agreed - it's all a question of risk (and the potential of side effects) vs. benefit.  Still, a lot of women who have single mastectomies for DCIS do choose to take Tamoxifen as protection for their remaining breast.  What you should do is find out your risk level to get a new primary (it's based on your age at time of diagnosis, plus your personal and family breast health history), and whether that's a level you can live with comfortably or whether taking Tamoxifen would make you more comfortable.

Olivia, sorry to hear about the microinvasion.  If the microinvasion is right at the margin, then there's a good chance that radiation may be recommended.  If it's only DCIS at the margin, then probably radiation won't be recommended but with the recent studies... if you have a conservative oncologist, with a 1mm margin, he/she might suggest radiation.  As for the microinvasion itself, if you did not have an SNB, then you will need to get your nodes checked.  But other than that, usually a single microinvasion results in no other changes in treatment vs. pure DCIS.  But if you have more than just one or two tiny microinvasions of 1mm or less (each), then the situation could change. If there are several microinvasions, usually that creates more of a concern, particularly if the microinvasions are HER2+.  

sherry, my first recommendation is that if you are unsure of what to do, you might want to seek a 2nd opinion, either from another surgeon or from an oncologist.  To your question about radiation, there is no way to know if it will successfully kill off any cancer cells that might be left in your breast.  Most studies show that radiation reduces recurrence rates by approx. 50%, which means that it works perfectly half the time, but the other half of the time, radiation doesn't not succeed in killing all the remaining cancer cells.  The simple fact is that there is no way to know if any cancer cells are left in your breast and if there are some cancer cells left, there is no way to know which half you will be in with regard to the radiation.  Two questions for you: First, did you have an MRI?  MRIs are the most effective at showing areas of high grade DCIS.  If you had an MRI and nothing else showed up, that would be positive sign.  But without an MRI, given that your mammo didn't show one of your areas of DCIS, that raises the possibility that there could be more DCIS still in your breast.  Second, what was the size of the margins?  Even though you had 3 areas of DCIS, if your surgery resulted in very large margins, that would lessen the possibility that any cancer is left.  Those are important things that another surgeon would probably consider in making his or her recommendation.

Hope that helps!

mawhinney

 Bessie - In one of your above  posts you stated that a SNB can't be effectively done after a MX. Curious as to why?

Many thanks for you very informative posts.

Beesie

mawhinney,

The reason an SNB can't be effectively done after a MX has to do with how the sentinel node is found.  Our nodes are all clumped together so just from looking, it's not obvious which is the "sentinel" or guard node through which everything enters the lymphatic system.  To find the node, normally several injections of radioactive isotopes and/or blue dye will be made into different areas of the breast.  Sometimes the injections are made in the area of the cancer; other times the injections are made around the nipple.  What's important is to have several injections in diffferent places, so that initially the fluid from each injection is moving in a different direction. Then it's necessary to wait to allow the injections to move through the breast towards the nodes.  In my case, I had to lie for about 20 minutes under a scanner.  I was able to watch a computer screen and I could see the fluid from the four injections travel through my breast and eventually, over to my underarm area (i.e. to my lymph nodes).  In my case, all 4 injections converged at the exact same place, the same node.  So I had a very clear sentinel node and with the blue dye and the isotopes, it was marked for my surgeon to find.  In some cases the injections go to a couple of nodes - then there are two sentinels.  And sometimes they don't converge at all, in which case an SNB can't be done because there is no clear sentinel node. In any case, without a breast in which to make these injections, it is very difficult to accurately identify the sentinel node.  And an SNB is useless if it's some node other than the sentinel node that is removed and checked. 

So, after a mastectomy, there is no breast in which to make the injections, meaning that the sentinel node can't be located and therefore an SNB can't be done.  Make sense?

sherryb

Hi Beesie,

Thanks for responding so quickly. I did meet with the oncologist yesterday, but I felt Iike I was speaking a foreign language he didn't understand. He said yes, there could still be more DCIS, that hasn't shown up yet and in theroy the radiation should address any cells left, but there was no way of answering that question. I also asked how was an area missed and how could the biopsy been benign and then really be DCIS? He said nothing is certain and that yes there could be still more DCIS, but that the margins were clear and he concurred with the surgeon, that either mastectomy or radiation would yield the same outcome. But said that was my decision and to get together with him toward the end of radiation or 2 weeks after mastectomy, just make an appointment.

To answer your questions:  1. No I did not have an MRI, it was never offered and from what I am told now is that it would be difficult since I just had surgery. 2. I am told that the margins are clear. The path report says Uninvolved by tumor. Prior biopsy site extends to within 1.5 cm of the deep margin. The largest linear focus measures approximately .8cm on current biopsy. In addition to previous biopsy the inferior demonstrate high nuclear grade DCIS, and a section taken from between these two seperated by 2.5 cm demonstrates high nuclear grade DCIS. 

For the breast reduction they removed 822 gm from my right breast.

I meet with the plastic surgeon tomorrow. I absolutely, love both these surgeons, oddly enough I have received more information from them than the medical oncologist or the nurse oncologist.

Thanks for all your information,  

mawhinney

Bessie ~ Thanks for your explanation regarding locating the sentinel node after a MX.  My procedure was done differently than yours.  My radioactive dye was injected into my arm the afternoon before my surgery & I was scanned to see where the dye landed.  Thankfully, my SNB at the time of my MX showed no node involvement.  I'll have to ask my BS when I see her in June about "your" method as it sounds a  more thorough.