Has anyone had Reoccurance of DCIS after a Mastectomy

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2011

    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.     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Why don't you then remove your posts Beesie?   I think you can be very demeaning I think it is best if -people get medical advise from their team of doctors  So you remove your and I will do the same

    PEACE !

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited January 2011

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Well, that was a snarky remark.  I have absolutely no problem admiting I have cancer.  I am very thankful it was found at Stage 1 and I have a great team of Drs.

    No need to feel "compassion " for me.  I can cope just fine.  I find that people who put others down for no reason have an insecurity problem and low self esteem

  • otter
    otter Member Posts: 6,099
    edited January 2011

    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.]

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited January 2011

    What otter said.  I am forever grateful for all the helpful information that I got from Beesie when I joined these boards last December.

  • HantaYo
    HantaYo Member Posts: 280
    edited January 2011

    Namaste!

    Thanks to Beesie for continuing to set the record straight!

    Karla

  • xtine
    xtine Member Posts: 131
    edited January 2011

    I also have benefitted from Beesie's posts. But I do admit some confusion about whether to describe myself as DCIS or Stage 1 IDC. I was originally diagnosed with DCIS (10 cm, grade 2), and then found to have a 3 mm of grade 2 IDC after the final path report. My doctors were very reassuring and said that the treatment would be no different from my original DCIS treatment plan, and there was only a very small chance of metastasis. When I specifically asked for staging, I was told Stage 1a. This echos everything Beesie has said in the posts of hers that I've read. So, in a way, I was told I have Stage 1 DCIS. I know that I have IDC as well, but it's very hard to think of that or admit it to most people - I think when I updated friends and family after the path report I just said "they got it all" and "no chemo or radiation".

    Then I go to create a profile, and there's a selection for DCIS and a selection for IDC. Then there's the cancer size selection. I had 10 cm of DCIS - that's why they took my boob. But 10 cm and IDC, that sounds bad, so I choose DCIS. So it looks like I have Stage 1 DCIS. I looked at Beesie's signature and it looks like hers was done by hand, as her diagnosis was very similar and I can't select options that create that from my diagnosis q&a. So just a little gripe about this site and how you describe your diagnosis if DCIS with a small invasion.

  • ClaudiaBernard08
    ClaudiaBernard08 Member Posts: 11
    edited January 2011

    Hello Bessie,

    I am the gal that started this chain back in '08. This discussion seems to be a constant with so many women that have DCIS. I must tell you that you are the most informed person I've ever seen on this site. And, I thank you for always coming to the aide of so many who have written. I asked my oncologist last week about DCIS with mico-invasion and he agreed with you that this is defined as state 1 BC. Thank you for all you do for this site!

    Claudia Bernard 

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited January 2011

    I love Beesie!

    My tumor was LCIS, DCIS and IDC, so I was Stage 1 due to the small size of the tumor. 

    Bren

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2011

    Well, I may as well post too. Smile

    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.

  • D4Hope
    D4Hope Member Posts: 352
    edited January 2011

    Luann I think the person saw reoccurance and thought this is where she should ask that question. I don't think anyone said anything about you being contagious. It's only natural to be afraid of reoccurance.

  • MJLToday
    MJLToday Member Posts: 2,068
    edited January 2011

    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.

  • stvmom2
    stvmom2 Member Posts: 4
    edited February 2011

    Thank you Beesie for all of your wonderful information. I am new to the board searching for information for my sister. I just read through this entire thread and am very grateful for the knowledge and effort that has went into sharing informaation.

    My sister is in her late sixties and was diagnosed 10 years ago (2001/April) with DCIS in her left breast. It was widespread/scattered throughout the breast so she and the breast surgeon decided on a masectomy. 

    She went for her annual follow-up with breast surgeon a month ago and had her annual mammogram on her remaining breast. Surgeon came in and said "it's your ten year anniversary, congratulations!" she then did an exam and said she was good for another year.

    We felt joy and relief until this past week. About 8 days ago, she developed a red sandpaper type rash that goes the length of her scar. It is worsening and keeping her up at night with severe itching. Lotions and creams have no effect and it doesn't seem to be spreading anywhere other than her scar. No blisters, more like a heat rash. She hasn't changed soaps, etc. She does not have a reconstruction.

    Well, we called the surgeon on Monday and nurse said she absolutely had to be seen this week.

    I am a mess with worry. I have been doing none stop research and can only come up with skin mets. Is this possible with DCIS? Is it possibly an invasive cancer now? I haven't found anything to lead me to believe that it can be anything other than cancer. She sees the breast dr tomorrow afternoon. Need to be armed with questions and information.

    Any thoughts would be so appreciated.

    Blessings to all of you 

  • KiwiKate
    KiwiKate Member Posts: 11
    edited March 2011

    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.

  • brazos58
    brazos58 Member Posts: 261
    edited April 2011

    Hi all

    Need to toss something out to you all.

    Today is 10 months since my BMX. Had LE/ cording on my bad side. 2 days ago I noted many small " tapioca " like bumps/ some small/ some larger .... some just all together from the top of my armpit to the back of both triceps.  There are 2 many to count. I tossed this out to the LE forum wondering if it has any LE issues.

    I think they may be lymph nodes... and am trying not to freak.

     As usual I appreciate any of your thoughts and guidance.

    xoxo

  • brazos58
    brazos58 Member Posts: 261
    edited April 2011

    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

  • Emaline
    Emaline Member Posts: 492
    edited April 2011

    I know from reading the boards, there are reoccurances.  I did find this post from 2007 on this board and I think it has some wonderful information. I have never have the chance to talk with Beesie, but my goodness..I already rely on her information. It really does help calm me down.

     http://community.breastcancer.org/forum/68/topic/667611

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    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.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2011

    Hi Mantra

    Im hoping you can help me understand.....I was dx with DCIS stage 0, after lumpectomy with wide margins and Radio Frequency Ablation pathology came back with small nest of microinvasion. I was told by my BS and Oncologist that my chance of recurrance would be 3%.

    Although you dx is pure DCIS why is you percentage higher?

    hugs to ya!

    Aj

  • MSNOMORELUMPS
    MSNOMORELUMPS Member Posts: 54
    edited April 2011

    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

  • brazos58
    brazos58 Member Posts: 261
    edited April 2011

    (( Everyone))

     I just went to my surgical onc to have multiple lymphnodes under both my arms around my triceps area checked. They range from 2mm to 6mm. Have them on my good and bad side s/p BMX 6/10. She does not feel they are of concern and just need to be watched....as in if they grow larger to 1cm.

    She just mentioned that even tho I had a BMX for Grade 3 Dcis that I need to be watched for microinvasion. AAARRRGGGAAAHH. So I go back in 3 months... and live with this ever swinging sword over my head. Anyone ever dealt with this?

    I have not been able to take one sigh of relief since my surgery. even tho my risk is 1-2% for recur.

     Think of you all living thru breast cancer. Wishing you peace of mind.

  • CandDsMom
    CandDsMom Member Posts: 387
    edited April 2011

    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.

  • brazos58
    brazos58 Member Posts: 261
    edited April 2011

    CandsMom... thank you for your kind words and thoughts and input. And mostly for being the first person that even knew my Cancerversary was headed straight ahead... and what it means. I will run by the MRI idea to my Surg Onc. And am really sorry you are having to deal with all that has come your way. It sux!

    Hugs

    Brazos

  • pharmalady1
    pharmalady1 Member Posts: 8
    edited January 2012

    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.

  • tnhelen
    tnhelen Member Posts: 63
    edited February 2012

    Pharmalady

    Are you talking about the steretactic biopsy?  I hate that sucker.  If so, yes you can as long as you have a driver.  I took my own xanax before I left but my doctor would've prescribed some medication.  I told him I already had some and would self medicate.

    Good luck to you!

    Helen

  • Laurie08
    Laurie08 Member Posts: 2,891
    edited February 2012

    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
    Monica58 Member Posts: 1
    edited February 2012

    A little over a year and a half ago I had DCIS, stage 0.  I chose to have a double mastectomy with reconstruction.  I was 38 and I have a small child and I didn't want to give it any chance of coming back.  After going through reconstruction and thinking that I was almost done, two weeks ago I found a lump.  The cancer is back.  I was told that my chances of the cancer returning were around 1% becuase my original cancer was stage 0 and I chose to be agressive with a double mastectomy.  I am not trying to scare anyone, however my message is NEVER stop giving yourself breast exams, even after a mastectomy!!!  My doctor almost didn't order an ultrasound for me because he was so sure that it was not cancer.  My case is rare, but I want to let people know that it does happen.  Anyone else out there in my situation?  

  • brazos58
    brazos58 Member Posts: 261
    edited February 2012

    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

  • smva
    smva Member Posts: 36
    edited February 2012

    I had DCIS in Feb. 1979 and had a mastectomy.  Do not know grade or anything else since it was not on pathology report.  No chemo or radiation.  Just recently I was diagnosed with IDC in other breast, a new primary tumor.  Am happy for the 32 cancer-free years but was surprised with this diagnosis.  It was a Stage I, Grade 1 tumor, 1 cm.  Am doing CMF chemo, then Arimidex for 5 years.  I am 71 years old.  BC and ovarian cancer do run in my family, even though we are all BRAC 1 & 2 negative.   

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