has anyone with dcis decided to wait

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

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.

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.

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 

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

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

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.   

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)

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

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. 

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.

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.

'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

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.

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 -