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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 18, 2009 05:01PM

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

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 18, 2009 05:05PM mittmott wrote:

dcis is cancer. Why would you leave it untreated? Why leave cancer cells in the body? 

Dx 9/2000, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER+/PR+, HER2- Surgery 9/8/2000 Lumpectomy: Left Dx 9/2006, IDC, <1cm, Stage I, Grade 3 Surgery 9/1/2006 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
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Jan 18, 2009 05:32PM lanesue wrote:

The only time I have even seen the word WAIT is if you are too old and too sick to undergo treatment.  Give your self the best chance possible, get the darn stuff out of there.  If it is tiny enough and low grade enough that may be all you will need to do.

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Jan 18, 2009 05:38PM rasquel wrote:

i didnt think dcis was suppose to be painful. but yes, im also sore with dcis. but everyone told me that dcis was not painful. hopefully well get some answers from this site.

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Jan 18, 2009 05:42PM javagirl39 wrote:

my general health is good

i am 39, turning 40 next month

the lump is 2 cm

when the pain is severe, i want nothing more than to have the lump removed

i asked the question out of fear or denial, i suppose

i am terrified

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 18, 2009 05:46PM baywatcher wrote:

Javagirl-

What grade is your DCIS? I can see if it is grade 1 it might be possible to wait. The trouble is, once the doctors have opened the duct to biopsy it, I don't think the biopsy has created an opening. The only way to wait would be to not open the duct and to have low grade.

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Jan 18, 2009 05:49PM javagirl39 wrote:

baywatcher-

i am confused about your this part of your reply:

"the trouble is, once the doctors have opened the duct to biopsy it, I don't think the biopsy has created an opening. The only way to wait would be to not open the duct"

are you saying that the biopsy has opened the duct?

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 18, 2009 05:51PM dlb823 wrote:

Christina ~  The longer you wait, the more likely the treatment for it will be harder.  In other words, treating it early could mean a lumpectomy and radiation.  Left to proliferate, you might be looking at more disfiguring surgery and possibly chemo.  Those are just possible examples, but you get the idea.  The sooner you treat what you have, the easier your treatment regimen and the better your prognosis.  Please don't wait to get treatment.  Also, how was the DCIS diagnosed?  Did you have a biopsy?  An MRI?      Deanna 

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jan 18, 2009 05:54PM javagirl39 wrote:

Deanna, I had a mammogram followed by a biopsy on Jan 8. Four samples were taken.

My doctor will book the MRI to see if it has spread in the breast.

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 18, 2009 06:06PM dlb823 wrote:

Christina ~  Have you read the info' on DCIS written by the medical folks here?

http://www.breastcancer.org/symptoms/types/dcis/

I don't know if it will tell you anything you don't already know, but I thought I'd give you the link if you're interested. 

I'm glad you're having an MRI.  DCIS is often what's found first, but sometimes there can be very tiny invasive lesions present as well that don't show up on mammo or U/S. 

Another thought I had for you is...   If you were to leave it, how would you ever monitor it to know if it was becoming invasive?  It seems to me that fear and constant mammos/ultrasounds/biopsies to detect any change would be worse than getting the recommended treatment from the outset.  Just a thought ~  Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jan 18, 2009 06:08PM baywatcher wrote:

Javagirl

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

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Jan 18, 2009 07:27PM PuddinTame wrote:

I didn't think true DCIS would present as a palpable lump, and I haven't heard if it causing pain.

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Jan 18, 2009 07:44PM ADS wrote:

I agree with Mittmott.  I had DCIS diagnosed in March '08, had lumpectomy followed by radiation.  I'm "only" 64 and in good health and wanted it out of there.  My mother had it in her late 70's but had so many other health isssues it was safer to leave it than risk surgery.

I had no lump, DCIS was found on a routine mammogram.

ADS

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Jan 18, 2009 08:46PM digger wrote:

Actually, my DCIS presented with a painful lump.  My left breast was really sore and I hadn't been able to sleep on my stomach for months before I finally went to the gynocologist for my annual.  She was the one one who said immediately that the breast was funky and I needed a mammo.  They found the DCIS next to the lump, and the DCIS was so pervasive that I needed a mx.  The breast surgeon, in the appointment before the surgery (she was also a second opinion), said that DCIS that presents with a lump is also more likely to have an invasive component.  Fortunately, mine was pure DCIS.

So, I guess I would say definitely pursue it.   

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Jan 18, 2009 09:25PM - edited Jan 18, 2009 09:27PM by bermudagem

Hi Javagirl,

I know you are terrified. I was 38 when I found out I had DCIS. Just want 40 last week. I just wanted it out, as soon as I found out I had anything. I had a lot of pain with mine. If I understand what you were asking, You wanted to know if anyone had waited, and did nothing. I guess we all see things so different. I just wanted to get it out. Mine was very aggressive. I don't know what your's is. I was just thinking, "I am so lucky to find out so early". I had just got married, and was thinking I want to be with this man for the rest of my life. He is the most amazing thing in my life. But beside him, I just wanted to be healthy for me. I did not want the worry.  A month after I had the right one taken, They found suspicious finding in the left. I had that one taken too. Mine was over 9cm. and it was not just one, it was several. I  was so relieved to be rid of it. I can not tell you what to do, but think very hard before you anything. It is very scary. Life is not fear. Just take one day at a time. I wish I was there with you right now, Even just to give you a hug, and some encouragement. Get a good team of doctors that you trust, and put all your heads together. I will give a prayer for you tonight. Just for strength, wisdom, and patients. I really just wanted you to know I am here for you. I was in the same boat as you, just a year younger, when I was diagnosed. So, I really understand what you are feeling. Hang in there, And if you need anything, Don't hesitate to ask.

Shelly

What lies behind us and what lies before us, are tiny matters compared to what lies within us. Dx 10/30/2007, DCIS, 6cm+, Stage 0, Grade 3, 0/2 nodes, ER-/PR-
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Jan 19, 2009 12:38PM Deirdre1 wrote:

There is recent data on waiting because sometimes DCIS will "disappear" it is in the log here on this site under research.. It's just one study because most women do "do something" so they can't find a lot of women who did "nothing".  I don't advocate that you do nothing but you have no intention of "doing nothing:" you are going to remove it as you said.  My lesion was smaller than yours and when I asked if I could have the lump out, with clean margins and then not do the radiation I was told (I was a B cup) that I was small enough that the bs would have to take more tissue if he knew I was intending not to do radiation.  I thought about it long and hard, and since I had no intention of doing radiation for DCIS I felt that a mastectomy was the answer for me.  There is time though for you to do you homework, and get a better handle on this (almost all of us have to study before we can accept our dx).. but as with all cancer's the lump has to come out.  By the way, the reason for me not doing radiation is two fold.  I've NEVER been able to wrap my head around radiation (cancer causing) could cure cancer - perhaps it's sort of like a fire that is out of control and so the fire marshal creates a fire in front of it and they smother themselves??? I don't know, but the other reason and perhaps my main reason was because I have a problem with one of my lungs and I don't need to add radiation to the mix...  Your entire health is important when making the decision.  As is your mental health too - I alway recommend a therapist at your decision "fork" - how could it hurt to be able to open up entirely to another person outside of your family, someone who won't judge you no matter what decision you make.. Best of luck and my thoughts are with you - this is hard and nobody's words will really help but what is in your own head!!!  And the irony is stunning - DCIS is the earlies phase of cancer and yet often we have to do the most extreme treatment program (ie lossing our breasts)

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Jan 19, 2009 01:29PM roseg wrote:

I know it's frightening but DCIS is about as good as it gets for breast cancer.

Are you worried about the surgery or how you might look?

Rose
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Jan 19, 2009 03:40PM - edited Jan 19, 2009 03:59PM by louishenry

Hey Javagirl. It's awful, isn't it?!  To this day, I find DCIS to be frustrating. For every doctor that calls it cancer, there is another one that says it is not. ( Both opinions from top hospitals) That being said, it is probably not too good of an idea to wait. I had a teeny amount (2mm in a 4mm calc sample). The biopsy removed it all, but I still had a wide-excision to make sure. I suppose if there was a patient that may have been able to wait and see, it would have been me. NOT A CHANCE. I would not sleep at night. I have rotating digital mammos/us and MRI's. So far, no problem. The lumpectomy was not too bad, I just have a small scar. DCIS is frustrating because there are so many opinions. Dr. John Lee says low grade DCIS is just an inbalance in estrogen/progesterone and even Dr. Christiane Northrup feels it is reversable. It's easy for them to say that. I hate that some studies lump DCIS into breast cancer figures to make the numbers look better. You will probably feel much better after having the surgery and/or rads. Depending on your pathology, you may be able to skip rads. The whole ordeal is terrible, I know. But being in denial is worse. Regardless of what you call it, cancer/ pre-cancer, it really needs to come out so you can hopefully  avoid the real deal . Good luck, Nada

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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Jan 19, 2009 05:58PM Beesie wrote:

All DCIS is not created equal and you really need to understand the pathology of your DCIS.  Personally I wouldn't leave any amount of DCIS in my breast, but as far as other treatments go, for me it really would depend on the amount, type and grade of the DCIS.

If you have just a small amount (<1cm) of low grade DCIS without comedo necrosis, and if it can be removed with good margins (approx.1cm in size or more), then your recurrence risk is extremely low.  In a situation like this, some women choose to forgo radiation and/or Tamoxifen.  But if you have a larger amount of high grade DCIS, and/or you have DCIS with comedo necrosis, then there is a fairly high chance that some IDC - invasive cancer - may already be hiding out in the middle of the DCIS.  Or if not, higher grade DCIS is more likely to become invasive within a shorter period of time.  So to not fully treat high grade DCIS (either lumpectomy + radiation and possibly Tamoxifen, or a mastectomy) is to put yourself at high risk of recurrence.  And what everyone with DCIS needs to understand is that when DCIS recurs, 50% of the time it is not found until it has already evolved to become IDC.  So what started out as DCIS, with a 100% chance of survival and no need for harsh treatments such as chemo, turns into a potentially life-threatening case of IDC.

Overall, approx. 13% of women who are diagnosed with DCIS via a needle biopsy are found to have an invasive component (either a microinvasion or more) once the final surgery is done.  High grade DCIS and/or large amounts of DCIS are much more likely to be hiding small amounts of invasive cancer, so this means that for women with this type of diagnosis, the risk is much greater.  I've seen various studies on this - the % of women initially diagnosed with high grade DCIS who in the end are found to have IDC ranges from about 25% to 50%.  So if your pathology shows high grade DCIS or DCIS with comedo necrosis or if you have a large amount of DCIS, this is definitely not something to leave untreated or even to only partially treat (i.e. just remove).

Having said that, the good news with DCIS, even high grade DCIS, is that you do have time to figure this all out and make your decisions.  Most breast cancer is slow growing and treatment decisions (and the treatment itself) for DCIS in particular, because it is non-invasive, does not need to rushed.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 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 19, 2009 06:26PM ibcspouse wrote:

As most stories about Breast Cancer is scary, I don't intend to add more anxiety to those already dealing wiht the decisions on DCIS.  These are my observation and some research and not intended to be representative of and other's experience with this dx.

My wife had pain, a palpable mass and micro calcifications found by Mamm in May of 2005.  The breast surgeon decided that at worst, it was at best fibrosis at worst DCIS.  The BS decided to "aggressively monitor" and be ready to react once there were changes.  Every three months for 2 years, my wife had some type scan, diagnostic Mamm (6), US (6) and MRI's(7) of them.  There was some changes, but subtle, increased skin thickening the most noted.  The problem came almost overnight.  She developed Inflammatory Breast Cancer in same breast and same site.  The other problem, a bx was done and mis read so another 4 months passed before the official dx.  By then it was in both breast and she was Stage IV. 

So with her the odds failed.  If only 20 to 40% of non or under treated DCIS become invasive, and 1 to 5% of invasive breast cancer is Inflammatory Breast Cancer, the odds were in her favor, but the results were not.  So, the one big drawback to waiting and observing, is the possibility of the development of IBC.  That happens so quickly, and is already stage 111b at least.  I wish we had known these possibilities in 2005. 

'and better things ahead I feel for the beatiful Camille' Dx 2/6/2008, IBC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Jan 19, 2009 06:36PM NancyNJ wrote:

I have no idea where some of this information comes from. I got diagnosed and second AND third opinions from world renowned cancer centers in the United States. Not once did any medical professional tell me that DCIS would "disappear" or I could wait it out and see what it did. I was told each and every time,"Get it out and get it out now".  There were no options. The recommended course of treatment in ALL the medical research publications is the same - REMOVE.  While DCIS is non-invasive in its original cell formation, the cells can change to an Agressive Invasive Ductal Cancer - no one knows when or how long so time IS a concern. 

Dx 12/1/2008, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Jan 19, 2009 07:03PM roseg wrote:

I think it's pretty well known that DCIS treatment often is over-treatment because it doesn't all go invasvie, but since there isn't a way to distinguish which will go invasive and which won't treatment is the proper course of action.

If you are young you have more estrogen and more opportunity for DCIS to turn invasive, so it's never just left in a younger woman. Someone in their 80/90s, particularly if they health isn't great probably wouldn't want to bother with treatment.

I don't have my copy of Susan Love around, but she cites some studies of autospies where the women died of something besides breast cancer and were found to have DCIS or not.

Rose
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Jan 19, 2009 07:43PM javagirl39 wrote:

Thanks to everyone for your replies.

I do want the lump removed. I do not want to wait.

As Deirdre1 indicated in her post above "the irony is stunning - DCIS is the earlies phase of cancer and yet often we have to do the most extreme treatment program" -- this pretty much sums up how I've been feeling the past few days. To learn that I have a form of breast cancer that is referred to as a pre-cancer and yet still have to face the possibilities of radiation, chemo or mx, etc is scary as hell. At this point, I just want the chance to live life for as long as possible and to answer roseg's question "Are you worried about the surgery or how you might look?", I'm scared about everything like how my mom will take this news as I'm concerned about her heart health, how I'm going to care for myself during treatment as I'm living on my own, the financial impact of not working during treatment as I am self-employed, the fear of not finding a man who can handle this part of me as I'm single and so many more, but it helps to face all those fears head on with feedback such as the replies I've received above.

Thanks again.

Christina

Dx 2/24/2009, IDC, 2cm, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Jan 19, 2009 08:25PM soccermom96 wrote:

There is no "evidence" that DCIS causes pain but many of the medical texts cite what they call "anecdotal" reports of pain, meaning that patients report pain but there is no scientific proof of pain.  That said, many of the women on this board have reported pain prior to or following a diagnosis of DCIS.  It's not an indicator of how extensive the disease is and it might be hormonally influenced since @ 39 you are pre-menopausal.  Don't let the pain scare you.

DCIS is treated in so many ways that you are not automatically facing chemo, radiation and surgery.  It might be more manageable than you are imaging.  Fear makes everything look far worse.  I decided on bilateral mastectomies and have recovered very well.  I do not need chemo, radiation or tamoxifen.  You have come to the right place to ask questions.  Go slow, get the information you need, talk to your friends.  I bet most will come flying to your side with offers of assistance, cooking, cleaning, driving, etc.   Hugs to you.

Dx 9/8/2008, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Jan 19, 2009 09:39PM - edited Jan 19, 2009 09:40PM by Deirdre1

For NancyNJ:  Quoted from Susan Loves Home page: Note this study was reported here on breast cancer.org.. but again this is just one study - not to be taken as the be all and end all...

Can Breast Cancer Disappear?
January 7, 2009

A recent study suggests that 22-27% of breast cancers could actually go away by themselves-without treatment.

The findings come from an intriguing analysis of breast cancer screening data collected before and after four Norwegian countries started biennial screening mammography programs for women in 1996.

To study the impact this national screening program had on breast cancer incidence, a U.S. research group compared the number of invasive cancers that occurred over two consecutive six-year periods in two groups of women ages 50 to 64. One group of 119,000 women were offered mammography screening three times between 1996 and 2001 as part of the new program. The second group of 110,000 women was followed from 1992-1996, the six years prior to the start of the national screening program. These women were offered mammograms in 1997.

The researchers found that the incidence, or number of breast cancers found, rose substantially when the screening program was implemented. This is what they expected to see, because whenever a screening program is introduced all the cancers that would have been detected over the past few years are suddenly found. But then the incidence starts to level off, giving you a good sense of the actual rate of breast cancer in that population.

The rate seen in this group should have been the same as that seen in the group of women who were not screened. But that wasn't the case. Much to their surprise, the researchers found that the breast cancer rate was significantly lower in the group of women who had not been part of the screening program. In fact, the unscreened group had 22% fewer invasive cancers than the screened group. This led the researchers to conclude that the women in the unscreened group must have had cancers that had gone away by themselves or "disappeared" without any treatment at all.

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Jan 19, 2009 09:56PM - edited Jan 19, 2009 09:58PM by NancyNJ

Roseg Wrote:

'I think it's pretty well known that DCIS treatment often is over-treatment because it doesn't all go invasvie, but since there isn't a way to distinguish which will go invasive and which won't treatment is the proper course of action."

With this logic all Cancer treatment is over-treatment because all malforming cells don't all become invasive. All cancer cells are malforming.

As far as the study information from Susan Love's homepage I took a study - two people, we both think it is not only outrageous but dangerous to present information like that to uneducated  and vulernable people with no resourses to believe that after a breast cancer diagnosis they can just sit back and do nothing and it'll go away. So 100% of the people in my survey think it's absoluely insulting to anyone who has lost a breast or lost someone to breast cancer

Dx 12/1/2008, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Jan 19, 2009 10:15PM ibcspouse wrote:

NancyNJ,

You may have the sweet diplomacy of a New Jersey girl, but you are 200% right.  In my wife's case, the BS did not every tell her that it could be DCIS, we only found out that was a possibility two years later when we finally got all of my wife's medical records.  We were told it was most likely fibrosis, and that it is B9.  But being such a "great" medical center, they were gonna monitor.  So lesson learned, always get your medical records as soon as they are available.  Two, if a Dr tells you he wants to monitor it closely, get a second opinion.  If if is DCIS, TREAT IT,

The BS lawyers and my wife's lawyers are in settlement negotiation, with them admitting mistakes.  That isn't important except it may allow my wife to keep getting the best treatment she can find at MD Anderson, without the financial fears that most go through.  I am willing to bet, the BS will bx lumps and microcalcifications from now on. 

'and better things ahead I feel for the beatiful Camille' Dx 2/6/2008, IBC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Jan 20, 2009 05:34AM roseg wrote:

The study that found that some breast cancers go away didn't include DCIS.

I read a complete review of that elsewhere and the cancers they used in that comparison were deemed invasive.

DCIS is not invasive.

Rose
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Jan 20, 2009 07:44AM Deirdre1 wrote:

NJ - that study WAS NOT done by Susan Love that was just the quickest way I could get it to you.. and yes as I said (continue to say) that is just one study.  And it is no more outragious to report that study here when it was reported by the main annual seminar in the country on bc AND reported here at Breastcancer.org!   Or else all ALL studies have to be thrown away!  But YES as I said it is just one study - but it is real and it is what some will use as their explanation to "do nothing", which is why I brought it up..

Doesn't matter that it did not include DCIS - cancer comes and goes in our body all the time - to suggest that DCIS -- the earliest form of bc -- couldn't be "taken out" by our immune system too is not clear thinking IMO.

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Jan 20, 2009 08:12AM NancyNJ wrote:

I can't believe I was so stupid not to have asked you first Deirdre1 instead of a) spending all that money on Highly trained Surgeons, Oncologists and Radiologists and b) having my breast removed and c) putting m family through all the worry when I could have just waited since "cancer comes and goes in our bodies all the time".  So I'm going to go to New York this morning and tell them that Deidre1 says I don't have to come here anymore because every survey deserves it's say.  And by the way whose "Main Annual Seminar" was its? Mayo, Sloan? or someone with a nice website?  Do you realize you are relaying irresponsible information that can cause someone to lose their life? Picture someone who was just diagnosed and then lost their job so they have no more medical insurance and they are trying to figure out how they are going to afford a doctor and then they read your irresponsible post and think it's OK to wait or it will just go away. Just irresponsible -

Dx 12/1/2008, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Jan 20, 2009 08:19AM - edited Jan 20, 2009 08:20AM by Deirdre1

You are just rude!   And completely taking my comments out of context!  San Antionio Breast Cancer Symposium was the symposium I mentioned and it is made up of bc doc's from all over the country and if you haven't heard of that well that says a great deal about where YOU are coming from!  This is a forum of exchancing information and if it was information that Breastcancer.org and the San Antonio Breast Cancer Symposium tossed around AND you reject it well good luck with that!

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