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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: has anyone with dcis decided to wait

Topic: has anyone with dcis decided to wait

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jan 19, 2009 09:01AM

javagirl39 wrote:

hello all

i have pain in my left breast and recently diagnosed with dcis

the pain comes and goes, sometimes more severe than other times, Tylenol seems to help

i have read there are risks of leaving dcis untreated

has anyone been diagnosed and decided to wait?

thx

Christina

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Posts 31 - 60 (114 total)

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Jan 21, 2009 12:25AM Carmelle wrote:

Poor Javagirl...asked an honest question and one I may have asked when I thought I only had DCIS> Invasive cancer is not a diagnosis you want to wait for...honest my dear...do what you need to now so you can live your life out well in the end. It's hard I know. See you're in hamiton. I'm in oakville.Michelle

Yesterday is History... Tomorrow is Mystery...Today is a gift.

Dx 3/7/2003, IDC, 6cm+, Stage IIIa, Grade 2, 5/15 nodes, ER+/PR-, HER2-
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Jan 21, 2009 01:24AM javagirl39 wrote:

The study is interesting and if it leads researchers to ask why then maybe someday someone will somehow find an answer, but in the meantime, personally I'm not going to risk my life. I'm 39 and in good health and if I need treatment then now is the time to do it. I have to invest what time and energy I have into taking care of myself and not let any 'what-ifs' take away from that -- maybe this is my first step towards my fight with cancer.

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 21, 2009 01:52AM MelissaA wrote:

Hey javagirl - How are you holding up? I've been thinking about you.

Hugs and prayers,

Melissa

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Jan 21, 2009 06:03AM, edited Jan 21, 2009 06:04AM by Beesie

Christina, when I was diagnosed with DCIS (along with a 1mm microinvasion of IDC), I was shocked to hear my doctor tell me that I would need to have a mastectomy.  I have found out in the time since is that although DCIS is the earliest stage of breast cancer, it often needs the most drastic surgical treatment - a mastectomy.  And even when a mastectomy is not medically necessary (i.e. all the cancer can effectively be removed with a lumpectomy), many DCIS women choose to have a mastectomy because it eliminates the need for other treatments (this would not be the case with more advanced cancer).  Here's why:

  • To the first point as to why mastectomies are often necessary for DCIS:  DCIS cancer cells are completely contained within the milk ducts of the breast.  Because of this, in many cases as the cancer cells multiply (as all cancer cells do), they tend spread out within the ductal system of the breast.  So DCIS more often than IDC tends to be multifocal (in more than one location in a single quadrant of the breast) or mulitcentric (found in more than one quadrant of the breast) and DCIS tumors on average tend to be larger than IDC tumors.  For most women who have larger tumors, and/or multi-focal and particularly multi-centric breast cancer, a mastectomy is the only viable surgical option. 
  • To the second point as to why some DCIS women opt to have a mastectomy:  Women who have more advanced breast cancer are going to need chemo and hormone therapy (if they are ER+ and/or HER2+), whether they have a mastectomy or a lumpectomy.  In many cases, if they are node positive, they will also require radiation regardless of whether they have a mastectomy or a lumpectomy.  So the choice of surgery doesn't have any impact on any other treatments - these other treatments are being given not to address any cancer that might be in the breast, but to address any cancer that might have already left the breast and moved into other parts of the body.  So removing the breast doesn't reduce the need for these treatments.  However, because these women will get chemo, hormone therapy and possibly radiation, their local recurrence risk (i.e. in the breast) will also be significantly reduced.  So for women with more advanced breast cancer, there is little if any benefit to having a mastectomy.  On the other hand, women who have DCIS do not need chemo under any circumstances. And women who have a mastectomy for DCIS most often do not need radiation and do not need Tamoxifen (unless they choose to take it to protect their remaining breast).  But women who have a lumpectomy for DCIS will, in most cases, be prescribed radiation and Tamoxifen.  So this means there can be a signficant difference in which other treatments are required for DCIS women depending on which surgery (lumpectomy vs. mastectomy) they have.  And for this reason, a surprisingly high % of DCIS tend to choose mastectomies.

For pure DCIS (or even DCIS with a microinvasion), the treatment options are pretty much agreed to be either:

Lumpectomy, followed by radiation, followed by 5 years of Tamoxifen.  In a small number of cases, if the area of cancer is very small and low grade and if good margins were achieved in surgery, radiation might not be prescribed.  Tamoxifen would be prescribed only for those who are ER+.

Mastectomy.  If a microinvasion is found and if it is near the chest wall or skin, radiation may be required after a mastectomy.  This is quite unusual, however.  Tamoxifen may be prescribed after a single mastectomy as protection of the remaining breast but it's entirely optional. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 21, 2009 06:58AM prayrv wrote:

Good afternoon ladies!

I must give you my story.  I've had had annual mammograms for 7 years with no problems.  I had decided to start at age 35 just for baseline.  I skipped 2006 (life got in the way of making an appointment).  In 2007 I had an abnormal mammo - calcifications were discovered.  Had stereo biopsy to confirm.  How my doc did it was to take samples from the calc area and from an adjacent area.  DCIS was found in both areas with loblular extensions.  I had to have a followup MRI (which lit up like a christmas tree!).  There was one area that did not show up on mammo that was bx'd by ultrasound.  That showed more DCIS.  My breast was a small A cup.  The area of DCIS was 5cm x 4cm x 8cm - my whole breast.  For me, mastectomy was my decision.  It was only after my mast that 8mm of IDC was found.  Sneaky little sh$t wasn't it!! Surprised  Needless to say my margins were not clear and I had to have radiation (with an expander no less).  26 regular sessions and 9 boosts.  I am currently on Tamoxifen since my cancer was er +.  I feel that MY situation needed to have a mast.  Everyone's path and situation are different and must be approached in that way.  By the way I am almost 2 years out and doing great.

Gentle Hugs,

Trish

Dx 4/27/2007, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jan 21, 2009 11:25AM mikita5 wrote:

Bessie: I'm so glad I ran into this discussion board. I have DCIS high grade and have been going round in circles trying to decide if I should have radiation now since I've already had a lumpectomy. I've felt all along that I should have a masctectomy but husband thinks I had clean margins, no lymph node involvement, so I should be ok... I feel there's microscopic cells floating around and the breast needs to be gone. After reading your post, I know now that I  need to go thru with the masctectomy. Thank you!

If God leads you TO it, he'll lead you THRU it!

Dx 1/2/2008, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+
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Jan 21, 2009 01:48PM Beesie wrote:

mikita,

Here is some information that you may find useful.   This website provides information about recurrence risk based on the type of DCIS and the size of the margins.  As you can see, higher grade DCIS or DCIS with comedo necrosis does have a higher recurrence risk than lower grade DCIS, however the size of the margins can really affect this.  Even high grade DCIS or DCIS with comedo necrosis will have a very low recurrence risk if the margins are 1cm or greater.  The problem is that 1cm margins are often hard to achieve with a lumpectomy, if the tumor is more than about 1-2cm in size.  This is why a mastectomy is often necessary for women who have larger DCIS tumors (and this is particularly true for those who have smaller breasts).   http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2

The following website provides another way of looking at similar information.  Using the information on this site, you can assess you risk level based on the grade of the DCIS, the size of the tumor, and the size of the margins.  http://www.breastdiseases.com/dcispath.htm

This is all good general information - something to help with the decision - but it's really your doctors who should be telling you, based on your specific pathology, what your recurrence risk is.   Since you haven't had radiation yet, your doctor should be able to tell you what your recurrence risk is currently (after a lumpectomy only), what it would be lowered to if you have radiation, how much further it would be lowered again if you take Tamoxifen (assuming your DCIS is ER+) and what it would be if you just have a mastectomy instead.  This is the information you should have to help make your decision. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 21, 2009 05:32PM musicale257 wrote:

I was diagnosed with Low grade DCIS in Nov 08 and have decided to wait as I discovered there have been no conclusive studies as yet to say whether this will develop into invasive cancer or not.  My Specialist admitted that there is not alot known about this and that there could be a 10 - 30 % chance of it developing into invasive cancer.  Well that tells me there is a 70 - 90 % chance that it may not develop.too  He also told me I may have had this for 30 years and could have it till I die  without it developing.  I am 52 years old and are finding that alot of "overdiagnosis" is going on and this seems to be driven purely by fear.  I will continue with mamagrams to note any changes over 6 month periods but will wait and see what develops before making any hasty decisions.  All this has shown me that the only advancements in our century seem to be in imaging rather than prevention or treatment as the treatment does not seem to have advanced over the years as a removal seems to be all that's on offer.  For now I am trusting my gut instinct and will not have my breast or breasts removed just yet.  One thing - ask your Specialist if a person in general who is 100 % healthy was put under the microscope and analysed very closely - would cancer cells show up in their body?  My Specialist says yes - I rest my case.

I would like to say that I am pleased to read everyones comments about this in general as it puts my mind at rest for the time being.

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Jan 22, 2009 01:14AM javagirl39 wrote:

musicale257,

Thanks for sharing. I hope you don't mind a few questions:

Other than your low grade DCIS diagnosis, how is your health?

What led to your diagnosis? Have you had a biopsy? Have you had an MRI?

Do you experience any pain in the your breast?

Do you have a lump in your breast? If so, what is it's size? Has it been removed?

What is your Specialist's specialty? Breast cancer surgeon? Oncologist?

What was her/his opinion? Did you get a second opinion?

Since you are the only person who has posted that you are deciding to wait and see, I am curious to ask you what would it take to change your mind? What would have to happen for you to decide not to wait and see anymore? I am not trying to challenge you. I have asked myself this question over and over.

I have pain in my breast. The pain prompted a visit to the doctor to have it checked out. The existence of the lump itself did not. So for me, wait and see stopped when the pain started.

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 22, 2009 03:44AM, edited Jan 22, 2009 05:06AM by Beesie

musicale257,

If your specialist said that there is only a 10% - 30% chance that your DCIS will develop into invasive cancer, he was referring specifically to your situation. You say that you were diagnosed with low grade DCIS - I assume grade 1? And how much DCIS did you have? If you had only a small amount of low grade DCIS, there is evidence to suggest that the risk that it might become invasive is probably quite low, but the statement your doctor made most certainly does not apply to all cases of DCIS and anyone else who is newly diagnosed should not assume that what he said applies to them. To my earlier post, all cases of DCIS are not created equal.

The fact is that while it's currently believed that not all DCIS will go on to become invasive cancer, the % that will become invasive is unknown - I have seen some estimates as low as 25% but most sources estimate that approx. 50% of DCIS will become invasive and I've seen some estimates that are higher than that. The most well-respected breast cancer authorities simply don't venture a guess because they know that there is no good information on this. For example:

Because of increased screening with mammograms, the rate at which DCIS is diagnosed has increased dramatically in recent years. Fortunately, the condition isn't life-threatening, but it does require treatment. Unlike lobular carcinoma in situ (LCIS) - which really isn't a cancer at all but a marker for increased risk of developing invasive breast cancer - DCIS is more likely to develop into invasive breast cancer if left untreated. Http://www.mayoclinic.com/health/dcis/DS00983  

Ductal carcinoma in situ (DCIS) is a noninvasive condition. DCIS can progress to become invasive cancer, but estimates of the likelihood of this vary widely. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

While virtually all invasive cancer begins as DCIS, not all DCIS will go on to become an invasive cancer. An invasive cancer is one that has the potential to metastasize (spread). Right now we have no way to determine which DCIS will go on to become invasive cancer and which will not. That's why doctors recommend DCIS be treated. 

Http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&SID=164

Having DCIS means that a woman has an increased risk for developing invasive breast cancer in the future, unless she has treatment. With appropriate treatment, DCIS is unlikely to develop into invasive cancer. A woman with DCIS does not need all the same treatment as a woman diagnosed with invasive breast cancer, but she does need surgery to remove the DCIS, and radiation to ensure that any stray, abnormal cells are destroyed. This lowers the risk that the DCIS will recur or that invasive breast cancer will develop. 

Http://www.center4research.org/wmnshlth/2006/dcis10-06.html

Overall, it's estimated that about 20 to 30 percent of women with untreated, low grade DCIS go on to develop invasive cancer. It's not currently known how common it is for higher grade DCIS to turn into invasive disease.  Http://ww5.komen.org/BreastCancer/DuctalCarcinomainSitu.html

This particular topic - the % of DCIS that becomes invasive - comes up frequently on this discussion board and it happens to be one of my hot buttons (but then you may have already guessed this). Rather than repost everything that's been posted on this before, here is a link to a thread from last year where most of the current science on this was presented:

http://community.breastcancer.org/forum/68/topic/719826?page=1#idx_19

Edited to add:  musicale257, I just reread this post and it reads a bit like I'm jumping on you.  I apologize for that; it wasn't my intent at all.  While personally I believe that all DCIS should be removed, I also agree with you that there is a lot of overtreatment of DCIS.  That's why I always emphasize the point that not all cases of DCIS are the same.  The risk of recurrence and the risk of invasion for someone who has a small low grade DCIS is very different than these same risks for someone who has a large area of aggressive DCIS.  And because of that, the treatment considerations can be quite different too.  In my time on this board, too often I've seen women gravitate towards treatment advice from others who've had a very different diagnosis.  This can lead to undertreatment or overtreatment.  For example, my decision to have a mastectomy because I had 9 cm of high grade DCIS (along with a microinvasion of IDC) offers no guidance whatsoever to someone who's been diagnosed with <1cm of low grade DCIS.  Similarly, your decision to opt out of treatment after being diagnosed with low grade DCIS should not be taken as a reassurance that no treatment is necessary for someone diagnosed with high grade DCIS.  It would be nice if doctors explained DCIS better so that we each understood where we stand in the DCIS spectrum, but unfortunately most of us come here with little understanding of DCIS and how variable it can be.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 22, 2009 04:21AM Beesie wrote:

I've noticed that the last link in my previous post isn't working properly.  For some reason I have no problem linking to the internet but I can never get links within BC.org to work correctly!  Rather than fuss with it, I will bump up that previous thread.  It's called "DCIS to invasive statistics?".

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 22, 2009 11:03AM prayrv wrote:

Beesie, 

You're the best!  I have always found your posts to be considerate and informative.  I have one question - my dcis was bx'd as intermediate with comedonecrosis present.  I wonder what type of statistics have the intermediate with comedonecrosis that become invasive?  I'm just curious since I was one of the ones who did.  Like I've said before and you have always mentioned, dcis is specific to the person who has it.  You had high grade with microscopic invasion and I had intermediate with 8mm invasion.  Sneaky crap this cancer is.

Gentle Hugs to all,

Trish 

Dx 4/27/2007, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Jan 22, 2009 11:12AM musicale257 wrote:

javagirl139

In answer to your questions - My health is very good.  What led to the Diagnosis is my GP advised me to get a mamogram due to my age and become part of the national screening program in NZ as it will be free.  I had no problems with my breasts before going for the mamogram, no pain, no lumps etc.

After the mamogram, I did have a sterotactic biopsy on my left breast which came back with the DCIS low grade result.  The mamogram did show extensive bilateral calcifications with some micro calcifications.  An area of the micro calcifications that was of concern was tested thus the result. The results were sent to a lab. and I presume was viewed by qualified pathologists though the actual report was written up by a Radiologist.

I was then recalled and the Screaning Program Breast Surgeon spoke to me and explained to me his assessment of the situation and suggested I have a masectomy or possible bilateral masectomy.  This of course was a shock to me also and I am very thankful that I have readmore on this subject.  The reason I have decided to wait is I am certainly not going to have my breasts removed because of one test.  I found the Surgeon who advised me to be very aggressive in his approach and he even admitted he was over diagnosing the situation but better to be safe than sorry.  I wonder if he would have this approach if he had to have his dick removed?  (Sorry ladies I couldn't resist that one).  I think I became alarmed with this aggressive attitude so decided to get a second opinion - I may even get a third but the problem being breast experts in this country seem few and far between as I think I am mainly seeing Surgeons who just think of operating. 

The second opinion was - there is no hurry and just to have 6 monthly mamograms to monitor if any changes occurr.  He has ruled out a MRI at this stage.  He also mentioned that it was debateable on whether it was cancer at this stage even though they call it duct carcinoma in situ. He admitted that little was known about the development of DCIS and that every case was different and he had a patient with this and no development so far (5 years on).  A biopsy was recommended by the Radiologist (2nd mamogram done privately at the Surgeons request), for my right breast but I decided not to have this as even though there is some micro calcifications the Breast Screening program did not seem to think anything looked unusual and I felt I was just having tests for the sake of it with no concrete result.

 I have read a few articles written by Doctors saying that DCIS cells are dormant and by having a biopsy could result in the cells becoming active.  If I had known about this before I most probably would have never had the other biopsy done.  Of course when I mention this to Medical Praticioners they just give the answer that there is no scientific proof of this.  I just wonder if there has ever been any studies done on this (why would there be), if not maybe that is why there is no scientific proof.

This is the reason I have decided to take the wait and see approach.  If something does happen to change my mind and it means life or death, then of course I will review the situation - until then I feel much happier within myself to be away from the aggressive medical practitioners who only give me a very negative feeling about the whole situation.

Everyone is different and I respect everyones decision on this matter as it has become obvious that not alot is known and alot of guess work is having to be made by everyone involved.

 

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Jan 22, 2009 01:31PM, edited Jan 22, 2009 01:45PM by Robby

musicale:  I think if you took the average of the two doctors you consulted with you would approach what I think is the "right" approach.  They seem quite extreme, to say the least, and certainly out of step with the scores of research and review articles about DCIS I have read. None of the doctors I met after my DCIS diagnosis recommended a MX, let alone two.  On the other hand all recommended  a lumpectomy probably followed by radiation.  After 2 lumpectomies, I chose to do more, to have a MX, for reasons I describe elsewhere in this forum.  As far as having one's penis removed, that is not quite but almost the choice faced by men with prostate cancer.  Watchful waiting is one of the approaches men with capsule enclosed prostate cancer can take. A radical prostatectomy or radiation have the possibility of removing or destroying the prostate before the cancer gets out but also can make the man impotent.  But what does one "wait" for. A man with prostate cancer can wait for the cancer to become more agressive and invasive, and withhold treatment unless it begins to enter the body -- something I of course pray never happens to you or me or my husband.  Invasive breast cancer, like metastisizing prostate cancer leads one down paths that both my husband, and I wanted to do our best to avoid.  Have you investigating how invasive cancers are treated -- that's  a direction we don't want to go in.What will you "wait for".  My husband and I decided not to wait any longer, to try and get rid of our cancers before they invaded the rest of our bodies. Consequently he has no prostate and limited potency (fortunately he is continent) and now I have only one breast.  Does this guarantee we got it all -- no but we felt that was what we wanted to achieve and surgery was our best shot.

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Jan 22, 2009 03:42PM, edited Jan 22, 2009 03:42PM by musicale257

Beesie,

No offence taken.  Yes I agree everybody is different and we must not become a statistic for that reason.  I am new to this forum and think it is wonderful to get everyones ideas and thoughts about this topic.  I have written why I have decided to wait and it is a personal decision.  I feel I need to see more specialised people over this matter rather than become a breast screaning program statistic.

 I have just read an interesting book called "Should I be tested for cancer?" by H. Gilbert Welch, this puts an interesting perspective on national health screening programs and tests.

I appreciate you have really done alot of research which is very helpful for alot of us to read.

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Jan 22, 2009 11:36PM barbe1958 wrote:

Wow! A lot of buttons were pushed on this thread.

As Rose says, DCIS is about the best cancer to get, but, and I say but, it is the hardest to ensure that all is out. How do you know that the lump taken out doesn't have another lump hiding a couple of mm to the left?

My nipple bled and I had pain at my lump site. I could also feel my lump. Someone told me, oh cancer doesn't hurt. I told them to ask my Dad that as he lay dying of cancer! 

The DCIS could have been in your system for 30 years, who knows. The biopsy could cause "seeding", which means as the needle is with-drawn, it drags cancer cells into the healthy breast tissue. Bet they didn't tell you that one.

DCIS also hides a myriad of cancers as you will see as you read through posts on other threads where additional cancer areas were found. How many ladies started with DCIS, under treated it and now have IDC or stage IV cancer? Did your doctor explain there could be other cancers in your breast at the same time?

Sorry, I don't go to the casino for the same reason. My retirement fund is not a lottery ticket!

My surgeon said if he had testicular cancer he would get them both off. He told me I did the right thing. My other breast showed hyperplasia and of course, microcalcifiactions which, in a lot of medical opinions, are the first signs of staging for breast cancer to develop. 

Ask your surgeon what he would do if you were his mother. He will hopefully tell you the truth.

Having said all that, is there a panic to do something this second. No. But you also don't know how long it has been present.

Do we all carry cancer cells in our bodies? Duh, yah. How do you think they develop? Did you think you pick them up off a toilet seat?

Wow, my first vent on breastcancer.org. I feel better, do you? 

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Jan 23, 2009 12:33AM survivor6years wrote:

Hello ladies, I had DCIS and at 52 I heard the word cancer and I just wanted it out of my body. I had the right breast removed and did three rounds of chemo. There was no doubt in my mind that I was not going to wait to have it removed. Best thing I ever did .It was a fast growing cancer and I had a doctor that I knew and trusted. I have been cancer free 7 years next month. I have never been sorry for the choice I made. It is not a easy choice to make, but it is a choice that can save your life. Everyone has to make the choices that they feel are right for them. I wish you the very best. We are all in this together and we should tell our stories and make no judgments on others.

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Jan 23, 2009 12:40AM javagirl39 wrote:

barbe1958,

You said: "The biopsy could cause "seeding", which means as the needle is with-drawn, it drags cancer cells into the healthy breast tissue. Bet they didn't tell you that one."

The only risk I was told about is a possible infection after the biopsy. No one said anything about "seeding". Where did you learn about this risk?

You said: "Having said all that, is there a panic to do something this second. No. But you also don't know how long it has been present."

That's right. They don't know how long it has been present and in my case, they haven't provided a complete diagnosis. The results of a biopsy where they removed four samples showed DCIS. I'm waiting for an MRI and don't know when that will be booked. My appointment with the surgeon is next week. When I hear people say it's DCIS, it can wait a week or so for appointments, I feel like saying DCIS is what they found but no one has ruled out invasive. And they don't know long it has been present.

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 23, 2009 12:52AM Dejaboo wrote:

survivor6years- if it was only DCIS what kind of Chemo did you have?  Chemo is never recommended for DCIS- it is not needed for noninvasive cancer.  Chemo has its own Short & long term SE & shouldnt be given when not needed.

Javagirl-Some Drs & People think seeding can occur when a Needle biopsy is done.

I feel it makes sense that it can happen.  Try to find a surgeon to agree with that & its very hard.

If you google Seeding, BC & Biopsy you may find some articles to read.

Pam

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Jan 23, 2009 03:08AM barbe1958 wrote:

Pam is right. The doctors will deny it is a possibility. They told me they've been "doing this for years and no one has said anything." Oh, so that makes it right.

Google it. I google everything now adays. But put parameters like "biopsy" or you'll get a lot of farming and gardening sites!

You will know so much more after the pathology of all your tests. There truly isn't a panic at this stage. Don't let anyone force you into a decision at this time.

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Jan 23, 2009 04:26AM Beesie wrote:

I believe that seeding can happen, but I think the risk is very low.

What's the risk?  Let's start with 1000 women having a needle biopsy.  80% of the time, the result is benign.  So there is no risk of seeding in 800 cases.

In 20% of cases, breast cancer is found.  In that case, surgery will be done.  I think about 40% of women these days have mastectomies.  In these 80 cases, all the breast tissue is removed so if there was seeding, it is no longer a problem.

In the remaining 60% of cases where a malignancy was found, the women choose to have a lumpectomy.  In almost all cases, radiation will be done following a lumpectomy.  I don't know the exact stats on this, but I'd guess that radiation is probably done in at least 90% of lumpectomy cases. The purpose of radiation is to kill off any random cancer cells left in the breast - obviously this would include any cells displaced by the biopsy needle.  So this means that if there had been seeding, the women who have a lumpectomy and who also have radiation don't have to worry because the stray cancer cells will be killed by the radiation.  That's another 108 women.

Of the remaining 12 women - those who have a lumpectomy but don't have radiation -  the question is, how many actually had seeding?  While many medical studies will acknowledge that seeding is possible, it is not something that happens with every biopsy - it's certainly the exception, a rarity.  If seeding occurred in 10% of all biopsies, it means that 1 woman out of these remaining 12 women would be affected.  Given the number of biopsies done every day and given the lack of medical evidence that seeding is a problem, it's more likely that only 1% of biopsies - or even fewer - result in seeding.  In that case, it's likely that none of these 12 women will be affected.  In that case, only one woman in 10,000 would be affected.  And what happens to that woman?  She has a few random cancer cells left in her breast.  They could grow and multiply and turn into something more serious, and in that case, this woman will be found to have a recurrence.  But if it's just a few cells, they might lie dormant forever or die on their own.

So, can seeding happen?  Yes, I think it's possible.  But in the scheme of things, is this something to worry about?  Probably not.  And what can be done?  If you choose to have a lumpectomy and you decide to not have radiation (or full breast radiation), you can ask to have the needle track removed during surgery.   

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 23, 2009 04:30AM TheQu33n wrote:

javagirl- like Beesie stated, all DCIS is not created equal, and each person's situation needs to be evaluated individually.

I've had a unilat, and if I'm faced with this situation again, provided that my circumstances will support it, my decision will be to wait and keep watch.

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Jan 23, 2009 05:11AM, edited Jan 23, 2009 07:26AM by Robby

Re spread from the biopsy -- if there is a lumpectomy the question is will it spread further than the margin -- can you get a 10 mm margin and still have pulled non invasive cancer cells further out into the tissue?  If it is pulled out will it become invasive?  I know there are similar debates re prostate biopsy.  The catch of course is without a biopsy how do you know if you have cancer?  Re mans issues, I know there is also a question of whether to have a "nerve sparing" prostatetectomy and thus still maintain some potency (albeit being sterile) and perhaps leave some cancer behind.  All these things are the choices we and our MD's are forced to make once stricken.

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Jan 23, 2009 05:59AM Deirdre1 wrote:

Re:  Seeding, I've always wondered why they (medical community) doesn't do a "chemo wash" when the lumpectomy or mx is done to improve the small chance of seeding occurring.  I believe there are studies underway to test if ducts can have chemo induced through the actual lactation openings to the ducts to see if DCIS can be altered in some way... But that's in VERY VERY early trials so no outcomes yet.. 

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Feb 6, 2009 09:02AM, edited Feb 6, 2009 09:04AM by MLawe

DCIS is stage 0.  It is not a cancer until it breaks through the ducts, then it becomes stage 1.

I was diagnosed with noninvasive DCIS seven years ago and did not have surgery.  I had an MRI a few months ago which showed it was still in the duct and had not gone anywhere.

I think the medical community really doesn't know what lowgrade (emphasis on lowgrade, please note!) DCIS is yet.  There have been studies showing the possibility that it may just burn out after several years -- meaning it disappears -- or that it simply never becomes cancer.

I'm not saying anyone should do what I have done, but I do have to say that I had big problems with how many of the doctors and surgeons behaved when I met with them.  The first option I was given was to have a mastectomy!  For what?  A tiny amount of DCIS that was non-invasive?  After that happened, I immediately decided to do my own research and not take everything that said to me as law.

I may eventually have it removed, not because I am in any danger, but because monitoring it sometimes seems like more of an annoyance than it's worth.  The doctors really don't like someone like me coming in and telling them that I don't intend to be overtreated.

It's everyone's decision what to do with their situation, and I think doing your own research is very necessary.

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Feb 6, 2009 09:13AM louishenry wrote:

MLawe. Interesting. How much DCIS did you have? You are the first person that I have ever heard of that did not have surgery. My DCIS was tiny, but I had it removed. I had a 2mm DCIS in a 4mm calcs sample. Are you on tamoxifen?

Dcis May 2007, 4 mm, grade 1-2, no rads recommended. Tamoxifen September 2007 .BRCA 1/2 Negative. Sis with LCIS

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Feb 6, 2009 09:23AM PSK07 wrote:

What study says that there is any possibility of it "burning out/disappearing"?

I will say that they do not know which DCIS could become invasive and which will not, but I've not heard of DCIS "disappearing".

Pam - adding LCIS & ALH to the mix, 8/25/08

Dx 8/3/2007, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+
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Feb 6, 2009 10:27AM, edited Feb 6, 2009 10:35AM by MarieKelly

Pam,

Other than the very recent study regarding the finding of higher numbers of breast tumors detected in those who recieved yearly mammograms as opposed to those who didn't ( thus suggesting the possibility of spontaneous remission), I don't think there are any actual studies done on spontaneous remission of breast cancer because that would require patients to consent to having all treatment, including surgery, withheld for that specific purpose - and that would be unethical. 

The ARE however, some documented cases of spontaneous remission in cancer, including a few involving breast cancers. Primarily though, the majority of documented cases have occurred in other types of cancers. So it definately does happen occassionally. You're just never going to see a large scale study on it other than indirectly such as the mammogram study mentioned above. Nor are you ever going to see very many documented cases since it's so rare for someone to refuse all treatment...and then even rarer still for those people to be so lucky as to spontaneously remit.

My guess is that if by chance, standards of care ever evolve to the point of allowing a watch and wait approach with small amounts of low grade DCIS, then we'll see a noticeable increase in documented cases of spontaneous remission. I think it happens far more often than anyone dares to imagine. But as long as all breast cancer is quickly excised and treated, I can't imagine it will ever be known for sure. 

I refused all treatment except the lumpectomy for a small. low grade invasive BC, but I don't think I could have been brave enough to refused the surgery. BRAVO to MLlaw - you've got some guts, girl!! 

Here's one example for you of a radiographically documented case of the spontaneous remission of low grade breast cancer that was not surgically removed or otherwise treated except for the discontinuance of HRT. 

http://radiology.casereports.net/index.php/rcr/article/viewFile/4/45

Ki-67 5%. Wide margin lumpectomy and biopsy track removal. Refused radiation and hormonal therapy.

Dx 2/22/2004, IDC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 6, 2009 01:39PM, edited Feb 6, 2009 01:41PM by NancyNJ

This Post was deleted by NancyNJ.
Dx 12/1/2008, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Feb 6, 2009 01:47PM car wrote:

This is an interesting thread, as when I was diagnosed w/"only" DCIS I thought treatment options would be a snap. There are times when I think that perhaps I should have waited--but not many. After 3 consults, numerous mammograms, biopsies, and an MRI, I opted for a unilateral mx. What was unnerving was the amount of DCIS described in the post-mx pathology report versus the scans and biopsies. It literally was throughout my breast, and I'm grateful that I decided to go along w/the mx. I still wish that I could have had a lumpectomy, but I now see that was an impossibility in my situation.

Unilateral mx 1/17/07, exchange 6/4/07, DIEP 4/25/08

Dx 8/8/2006, DCIS, 3cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+

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