Has anyone had Reoccurance of DCIS after a Mastectomy

Erica31 - or should I call you by your one of your other screennames, Daisy6? - creating two new personas (Erica31 and Erica's sister) with the same DCIS Stage I diagnosis that you have doesn't change the facts.

• DCIS is pre-invasive cancer and is always Stage 0, regardless of the size of the DCIS, the grade of the DCIS or anything else about the pathology of the DCIS. 
• DCIS with a microinvasion is Stage I.  That's because a microinvasion is a very small (i.e. micro) invasive cancer (i.e. invasion).  So DCIS-MI is not pre-invasive; it is the very earliest presentation of invasive cancer.
• An SNB is optional for those who have DCIS because DCIS by definition cannot travel to the nodes. There are many women on this site who've had DCIS who have not had SNBs. However for those who have high grade DCIS who have a mastectomy, usually an SNB is recommended because it is difficult to do an SNB after a mastectomy and if some invasive cancer should be found in the removed breast tissue, then the nodes would need to be checked.
• An SNB is mandatory for those who have any amount of invasive cancer, including just a microinvasion. 

These are facts. They are the facts that my doctors (who work at a world leading cancer center and are most certainly up-to-date) explained to me, they are the facts that I've read in the NCCN guidelines and they are the facts that I've read in at least 20 (and maybe as many as 50) other breast cancer treatment websites or articles. They are facts that your doctors no doubt know as well, since you were told that you have DCIS with a microinvasion (at least, that's what you've written here), you were told that you are Stage I and you had an SNB.  It all fits. It all makes sense.  It's all consistent.  The only thing that doesn't fit is your insistence that you have pure DCIS with no invasion and yet you are Stage I.  Your own pathology report indicates that the tumor is T1mic - you've said this.  Look it up T1mic. It's a microinvasion. That's not pure DCIS.   

As I've said before, I don't care what you believe your diagnosis to be. But I do care when you provide misinformation to others who come to this website for information.  This long dormant thread was revived recently but the discussion about your DCIS Stage I diagnosis was not brought up. No one is interested in having this debate with you.  Unfortunately however, it was you, as Erica31, who decided to bring this topic back into the current discussion and because of this, I and others have responded. So please, why don't you drop the subject. Believe what you want to believe. You've made your point. All the rest of us have made our points.  Let others who read this make up their own minds and do their own research.     

Like Kitchenwitch and redsox, I had a lumpectomy without a sentinel node biopsy. 

My personal suspicion is that those who insist they still have DCIS when they have been found to be stage 1 are not necessarily vindictive as much as they are incapable of coping with the idea that they have breastcancer.  I ran into so many people -- women with DCIS included -- who told me that DCIS wasn't really breastcancer.  Well by that logic, if a person keeps claiming they have DCIS they can tell themselves they don't have breast cancer.  Perhaps that is the situation here.

Alas, it doesn't really push the elephant out of the room, does it?  I feel sorry and compassion for such people and hope that they learn to cope with their reality.

This is otter.  There is only one thing I want to say:

BEESIE ROCKS!

The End.

[Edited to add:  Professional credentials will be provided upon demand.]

Namaste!

Thanks to Beesie for continuing to set the record straight!

Karla

Well, I may as well post too.

I have always appreciated Beesie Posts & Valuble information.  She often makes things that are hard to understand- Much easier to understand.  I would hate to loose her important input...Im glad You are still posting Beesie.

I had DCIS from Biopsy.  After my Lumpectomy I had IDC - I didnt even have to ask my BS what stage I was...because Invasive cancer always trumps DCIS no matter the size.  My IDC was only 1.2 mm!

By the way Hopefor30 1mm or less is considered a Microinvasion.

ztine the way I and others have gotten our dx to be more exact is we write it in on our signature line in our profile.

I think part of the confusion is just the initials DCIS themselves.  People see "ductal carcinoma" on their medical records or path reports, then think OMG I have DCIS-ductal carcinoma, without knowing what in-situ really means.  They are thinking ductal carcinoma is synonymous with DCIS, which of course it is not.

I have a similar pet peeve when people call recurrent, distant, metastatic cancer Stage IV.  It is not.  Staging is only done at the time of diagnosis, and shortly thereafter, as the doctors get more information from tests and surgery.  Only rarely is an original stage redefined, on the basis of additional information gained after, say, 6 months. 

 I was Stage II.  Now I am Stage II with distant recurrent mets.  Never have been Stage IV.  Never will be, at least not with breast cancer.  I might develop Stage IV melanoma, or pancreatic cancer, but not Stage IV breast cancer.

My dear mum was diagnosed as high grade DCIS 8 years ago in 2002.  She had the worst possible outcome ever and was in the 1-2% group.  She had full mastectomy and was discharged.

Unfortunately we are all devastated as it came back and was extremely aggressive.  She had terrible back pain for 3 months and just when she was going to get an MRI she broke her arm.  She had Mets everywhere- skull, back, pelvis, ribs, sternum, humerus and 2 spots in liver and lungs.

Within 9 months she passed away (2 months ago today).  The bony met in her skull pushed on her brain & she had about 33 lots of radiation.  Her liver & Lungs deteriorated but the radiation couldn't stop the swelling and pressure on her brain.

If I could go back in time I would have loved mum to have that sentinel node biopsy thing I have read about on the forum & possibly a 2nd pathology report as obviously there was an invasive bit in it that was not recognised.  ALso, I wish she had had radiation as well.

Mum was so unlucky.  I hate this disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am terrified of getting it now and am considering BLM as its so depressing mum had mamograms and a mastectomy and it still didn't save her.  I know its drastic but I really want to be here for my son & hubbie.

Just checking back in to see if anyone had any thoughts on my post.

 Checked in with my lymphedema therapist and she did not feel it was LE related....

 anyone ever have this?

nite all

Kiwikate.... So sorry about your mom... It is a terrible disease and unfortunately we do the best we can do with the tools we have... Your mom was treated for DCIS and thought she had done all the right things, but cancer is a stubborn illness and can hide and then rear its ugly head...

So sorry for your loss.

Ok this is the type of thread I had been looking for. I started another thread, because I had not been able to find one on the topic of recurrence after a BMX. I underwent a voluntary BMX in July, 2010 with reconstruction. I went to my doctor with concerns about a lump, which was determined to be cancerous. A whole different form. I am awaiting their feedback after presenting my case to the tumor board on Monday. I'm thinking they are considering chemo, which frightens me dearly. But I will not re-hash all my fears here. It's in my other thread I started. I just wanted to be able to speak to others who have have a reoccurrence so soon after undergoing a BMX. I'm scared to death, and chose the BMX in hopes of putting this behind me, as my DCIS was so small, I'm young, and have no history of BC on either side of my family....but then again, I have always been the first to do alot of things in my family, so I don't know why I thought this would be any different, lol

I hear you Brazos.  That sucks that you are having to deal with this.  I have had like 3 ultrasounds and a mammo of my recon breast and most recently an excisional biopsy since last year looking at various areas.  All thankfully benign to date, but that pesky multifocal intermediate to high grade ER PR (-) DCIS does sit at the back of my mind.  I see you are coming up on your first cancerversary soon - I found that my feelings (and fear) really escalated again around that time (mine was March 31).  What does your BS think about you having an MRI to look at the nodes just for peace of mind?  That is super frustrating. Peace of mind is a good wish, and I send it back to you too.

Just came from mammogram. Radiologist says he recommends a biopsy on the right side-had three areas circled on film.  I was diagnosed with DCIS Stage 0 in July 2011, had a lumpectomy (August 1st) followed by 6 and half weeks of radiation. I have been taking the Tamoxifen since it was prescribed.  I am a bit freaked out at the moment.  The thought of having 3 of those terrible biopsies is sending me over the edge.  Can I request some sort of sedation if I need these damn things?  I was on the table for over an hour because the radiologist was not sure if there was anything there to biopsy.  This time the areas look smaller than the original diagnosis on the left breast.

seriously,someone slammed Beesie?  No surprise, she was too classy to responde to the remark.  Beesie- thank you for your knowledge, guidance and class. As always  

Monica58 .... I have read here on BCO that women with DCIS are having recurrences even with BMX's.... women who have lowered they' re risks as low as possible can have it happen, even though its a 1-2%  chance. That's 1-2 women out of 100, ARRRRGGGAAAAHHH!

Hope someone can answer your Q. So I bump this thread for you.

I had Grade 3 DCIS/ and BMX... my rate is 6% for a recur....I have had 3 big scares in 1 1/2 years. I am amazed at how much DCIS is downplayed at times. I agree with your advice TOTALLY.

Strength to see you and your Child thru.

Blessings and Prayers

Brazos

xo