Has anyone had Reoccurance of DCIS after a Mastectomy

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  • momobarney
    momobarney Member Posts: 1
    edited November 2010

    Two years after BI, also BRCA2, cancer appeared in the tail of Spence, right armpit. Is this unusual?  I wonder if it was there two years ago, was it missed?  Any comments would be appreciated.  No chemo or radiation two years ago but I m doing it now.

  • flash
    flash Member Posts: 1,685
    edited November 2010

    I have no answers for you momofbarney.  I hope you get the answers.

    good luck

  • brazos58
    brazos58 Member Posts: 261
    edited February 2011
  • HantaYo
    HantaYo Member Posts: 280
    edited December 2010

    Namaste!

    So much information and some of it confusing.  My sister who was DX with BC 1 1/2 year before me and had a mastectomy with SNB (Surgeon did not originally want to do a SNB because it was "pure DCIS" but my neice who is a Nurse Practitioner insisted she have a SNB or find a different surgeon).  It never showed on mamogram but she had nipple discharge and they DX it by ductogram. Well, as it turned out there was invasion in several nodes and several weeks after her mastectomy they went in and removed all the axillary nodes. When I was DX she told me more of her story and said she had DCIS stage IIb, ER pos, PR neg,  Her2neu pos.  Her oncologist told her there was no chemo that would work on her type of BC but that she might get help with Arimidex and herceptin.  She denies having an Oconotype test. On her second dose of herceptin she had a devastating lung reaction and nearly died.  She has pulmonary fibrosis now and is homebound on oxygen 24/7.    Her treatment consists of Arimidex and manual exam by primary MD once a year.  No other follow up is seen as necessary by the oncologist.  WTF!  So much of this just seemed screwy or screwed up as she insisted she had DCIS not IDC so I asked if she would send me her report.  What she sent me was the doctors dictated report that plainly states DCIS stage IIb condition stable.  How can us sisters hope to keep things straight when oncologist put out this #@&*.  I realize her fragile condition might make chemo or more closer follow up a poor choice, but I believe SHE should have the choice.  She insists that her Dr. said it was not necessary and her NP daughter says that it is indeed what the MD says.  She has left the issue of second opinion alone because of the need for significant travel to get it and my sister would be compromised with any travel at all. 

    Karla

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    Karla, your sister's story makes no sense.  First of all, obviously she didn't have DCIS, as you well know.  There might have been some DCIS included with her invasive cancer, but with nodal involvement, her diagnosis was not DCIS.  It was IDC.  And being HER2+, it was an aggressive IDC at that.  Second, I thought that Herceptin was almost always given in conjunction with chemo.  So the idea that she would get Herceptin and not chemo is just plain weird. 

    It seems that your sister unfortunately had an oncologist who doesn't know anything about BC.  Dozens of women on this site could have given your sister more accurate information about her diagnosis and her treatment options.  And we could have led her to reliable sources of information that would have explained her diagnosis and options (the NCCI treatment guidelines, for example).

    I am so sorry that she's gone through all that she has.  From the sound of it, she needs to be getting much better follow-up than she's getting.  Is there any way that you can talk to her about all this?  Or maybe can you talk to your niece, who might be able to get through to your sister because she's a Nurse Practitioner?

  • brazos58
    brazos58 Member Posts: 261
    edited February 2011

    Beesie and Everyone Here

    I just returned from my first 6 month Check Up with my BS, s/p BMX's I noticed a lump on monday on my prophy side/ chest wall about 7 cm above my incision. My BS feels it is not anything to be concerned about... he refers to it as a NODULE....does not think it is a lymph node/ it measures 7mm. He also mentioned that it was possibly a FAT NECROSIS.  He tells me to come back in 6 months, I asked him if he should see me sooner?  His reply was he could Biopsy it if it would make me feel better. Yell

    Someone, anyone just say something... anything. 

    And any info on Fat Necrosis would be greatly appreciated.

    I am trying to exhale.....and cannot think straight at the moment.

    (( Everyone))

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    janey, I'm not sure what to make of your comment.  I'm not a doctor and I've never suggested that I am.  I just read a lot.  That's why I so often include links to medical sites or research studies or the NCCI treatment guidelines when I post, so that others can read for themselves and draw their own conclusions - that's much better than relying on what I say.  And that's why I tell people to check with their doctors about what anyone here says, including myself.  You're right that we do have to go with what our doctors tell us, but there is nothing wrong with being educated about our diagnoses and treatment options, and there is nothing wrong with asking our doctor's questions.  I hope that I sometimes provide help in that regard.  I don't want to do any more than that.

    What I do know with certainty is that DCIS is Stage 0 breast cancer.  Someone with Stage II breast cancer does not have DCIS.  What I also know is that DCIS is non-invasive breast cancer, which means that anyone with nodal involvement does not have DCIS.  This is really basic information about DCIS, stuff that just about everyone with DCIS learns over time.  So the fact that Karla's sister's doctors wrote that she has "DCIS Stage IIB" raises about the biggest red flag that can be raised.

    As for Herceptin, I don't know much about it but my understanding is that it's almost always given in conjunction with chemo.  So that begs the question as to why Karla's sister's doctor would have given her Herceptin while saying that there was no chemo that would work on her type of BC.  Again, that's pretty basic stuff, which raises the second big red flag.

    Brazos, I know that there have been women on this site who've had nodules after their mastectomies that have turned out to be fat necrosis.  So that seems like a reasonable explanation.  However if it were me, simply for peace of mind, I'd ask for the biopsy.  Just so that I wouldn't go nuts over the next 6 months!  I would think that the biopsy would be pretty simple to do, and that would provide the clear answer.  Having said that, waiting 6 months probably is low risk.  If the nodule grows, you'd certainly notice it and then you could go back in.  So it's personal preference, I think.

  • HantaYo
    HantaYo Member Posts: 280
    edited December 2010

    Namaste!

    Beesie:  Thanks for your comments.  After I had my BXs most were DCIS but one of the sites they could not rule out invasion.  So before my BMX I did a fair amt of research on DCIS and IDC and staging and general treatment.  As my sister and I talked more about our mutual BC her DX seemed strange and didn't make sense to me.  When I insisted she had more than just DCIS if she was IIb she continued to insist that that was what her Oncologist told her she had.  I thought she was misunderstanding him until she sent me his report.  Her NP daughter has visited with the oncologist and of course her mom but my sister totally trusts the doctor.  I live 17 driving hours away so we communicate on the phone and see each other every year or so.  My sister has to travel 60 mountain/plateau miles to all of her doctors and each visit is a major effort with some disaster happening each time with her oxygen or no Wheel chair being available, so I suspect that she has some complicity in this once a year follow up.  I do not know much about herceptin and being given with chemo but I also can not understand that no chemo was available to her.  As it is now, she probably would not survive chemo.  Her pulmonary fibrosis is her major life threat and the pulmonologist is who she primarily sees.  When I saw my oncologist before we knew if I was DCIS or also IDC I told him if I was Her 2 positive I would probably not agree to Herceptin.  He basically reassurred me that chances were we wouldn't even have to go there and to try my best not to get too far ahead by thinking about it.  It helped me know that this would be something we worked on together and that I would have control.

    An interesting note on my sister's nodes.  Along with her SNB and axillary disection they removed only 14 of her nodes, while on my BMX they indadvertantly removed 14 nodes in addition to the 3 SN.  She has had no LE thank goodness, I have.

    Beesie and others, I do appreciate your "teaching" on the site about staging and DCIS because I believe it is so important for women to understand their DX correctly.  It is so frustrating when an oncologist misinforms their patient such as my sister and a Nurse Practitioner daughter and Nurse sister can't make her understand the truth.  Since her health is so fragile we want to not make this a contentious issue since she has made it clear that it is the oncologist that she believes.  I am wondering if this has happened to others who find it more reasonable to believe an MD who is not current than the studys that show reality.

    One more point in this long dissertation.  A DCIS sister in my support group asked her oncologist for a test to see if Tamoxifin was being effective since she was not having any hot flashes or side effects what so ever.  He said there was no test available.  Yet other women on Tamoxifin who have had no SE in our group have had ? estridiol levels done and then have been told these levels show the tamoxifin is either working or not working for them. Also, she had a SNB with her lumpectomy surgery (?1-2 nodes removed) and she is going to be flying 5 x in next several months she asked him for a referral to get fitted for a sleeve before she goes to decrease risk of LE.  He refused, said she had no risk  for LE and to forget about it.  She is going to ask her gyn for an estridiol level and will find a new oncologist.  The group was really suprised by this since everyone else's oncologist and PS and BS have been very supportive of risk reduction and treatment for LE.  There are rotten eggs in every basket.

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited August 2013

    janey3, don't know if you meant it that way but I found your comment tremendously snarky.  Should we blindly follow our doctor's advice without thought or consideration?  As HantaYo aptly said, there are rotten eggs in every basket.

    I greatly appreciate Beesie's post about staging and DCIS -- it has helped me to gain an understanding of my condition.

    I also read the HantaYo's post about her sister and pondered why someone called it DCIS and stage III at the same time. 

  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited December 2010

    I am not a doctor, a radiologist or a pathologist.  I did not have a mastectomy for my DCIS, however, I have friends who had bilaterals, only to have cancer come back in the chest wall, either as DCIS, or as a more advanced cancer.  No one can tell at exactly what point a DCIS cell makes the mutation into a IDC cell.  There are all kinds of studies and statistics, I only know that some of my friends were unfortunate enough to experience it, two unfortunately are no longer here to tell the tale, and that was a bitter pill to swallow, as they were diagnosed at the same time I was.  Really makes you go through the what ifs.  Some of these ladies were patients at much better cancer centers than what I have access to. The reality is that although statistics are very favorable for DCIS survivors, there are some women that fall on the bad side of those numbers.  At this time pathology labs are not checking for the proteins and enzymes that are suspected in being the culprits in the advancement of DCIS to invasive to metastases, so beyond original size, grade and margins, its impossible to predict who will suffer a recurrence.

    Hopefully all you are dealing with is fatty necrosis, which actually seems relatively common.  I had a biopsy for a lump that could be felt but not seen on the diagnostics the year after my lumpectomy, and it was benign scar tissue from the rads and fatty necrosis.  I genuinely hope that that is all you are dealing with.   Everyone needs to do their own research and make appropriate decisions for themselves.  The watch and wait thing is difficult to do, and for myself, I had to make the decision last year to have a biopsy to get a definitive answer, in most part because my deductible was paid and it was going to be a lot cheaper than following it with diagnostics through the next year.  Once again, I was fortunate enough to have a benign pathology, but my "good" breast now carries a higher risk because of some benign breast disease.  Just glad to know that on this day, I do not have cancer.  Wishing you benign results also.

  • CandDsMom
    CandDsMom Member Posts: 387
    edited December 2010

    Brazos- I had something similar happen to me.  A bunch of little nodules that felt like a string of pearls up along the top of my reconstructed breasts.  The radiologist did an ultrasound and you could see little nodules surrounding surgical clips.  Thus the diagnosis was fat necrosis although I didn't have a biopsy.  I admit though, it did freak me out that it was on my cancer side especially since I had multifocal/multicentric DCIS to start with.  The good news is that after another ~6 months or so they went away.  I still worry though!

    As far as Beesie is concerned, I for one appreciate her informative posts.  I am in the healthcare field and she has a very strong grasp of the literature and distills it nicely in laymans terms.  Probably better than most doctors who, I think, forget their audience as some of the above posts clearly illustrate that women are still being misinformed about the state of their disease.  So thank you Beesie for doing your part to help your BC sisters be able to ask their doctors informed questions.

  • HantaYo
    HantaYo Member Posts: 280
    edited December 2010

    Namaste!

    Janey3:  The majority of Drs mean well, want to do the best for their patients, and keep up with current studies and recommendations.  They have frequent contact with others in their specialty and have a multiple practice that supports each others growth and excellence. Unfortuanately some are in practice situations that are so broad in scope and so busy and have limited contact with others in their specialty that they can't hopefully keep up with all aspects of their broad scope practice.  Then there are others who no longer care or never cared enough to keep up and are just out their punching the time clock till they can get to the golf course or the bottle.  Some are in group practices that have too much of the "good old boy" philosophy and wouldn't think of "policing" their own. I am a nurse and I know there are bad eggs and even bad egg baskets out there.  It is sad but we must protect ourselves by searching out information and being our own advocates.  Most medical teams are out there to protect us too, but sadly not all have our best interests at heart.  I feel it would be naive of me to believe that my medical team is always right. 

    I do believe that Beesie feels a very strong mission to inform other BC sisters when information is wanted and also to provide correction when misinformation is provided as truth.  Most of us do not have that strong personal mission to take the time to research the studies and to keep the discussion threads here informed of evidence based information.  It must be time consuming but I am thankful that she is doing it.  I know a small bit of how to interpret the validity and value of evidence based research and from the quality of the articles she sites I am thinking she knows a heck of lot more than me on how to evaluate a source.  She does not present herself as an MD.  She presents herself as a knowledgeable resource and I for one believe she is. I do not believe she wants us to just blindly believe her narrative, I believe she is trying to teach us to go to the source, so we can be the best advocate for ourselves. 

    Janey3, I hope this doesn't come on so strong that it sounds like a rant.  I feel you are saying that we need to listen to the advice of our doctors and I agree that carefully listening to them is a part of whole.

    Karla

  • brazos58
    brazos58 Member Posts: 261
    edited February 2011

    JennSmith thank you for you thoughts and post, and wishing me well. I am sorry for the loss of your Friends... Sending the same good wish's to you.

    CandsMom... thank you also for your thoughts and post.... glad they went away. Sending you Worry Free Ease.

    Thank you all for being here while I am in the freak, WORRY mode....

    (( Blessings))

  • brazos58
    brazos58 Member Posts: 261
    edited February 2011

    (( Everyone Here))

    Laynel57 thank you!  I am going for a 2nd opinion with a breast/oncology surgeon, don't even want to deal with my BS anylonger. I am still upset that a surgeon would say lets watch it for 6 months.... or IF YOU WANT 3 months... OR if you want I can biopsy it.... anyway I am set for the 3 rd week in January.  Its a nodule... been thru too much to just wait for a crap shoot.

    Thanks everyone and for just being out there somewhere!

    And as always a HUGE THANK YOU to Beesie!

    (( Blessings)

  • kingdom
    kingdom Member Posts: 8
    edited December 2010

    Hi there, I'm a bit nervous.  I was 1st diagnosed in 97, was on Tamoxifen for 5 years then bc came back in 2005.  I was put on zoladex and Femera for the last 5 years.  No cycle during those 5 years, yaaaa!!!!. I completed my zolodex in Jan of 2010.  still no cycle up to November 2010 here's comes my cycle ; -(.  December my cycle has been on for the entire month, over 26 days a very light flow but it's not normal I know.  My Chemo doc wants me to start back on the a injections in January.  My GYN Doc put me on provera to stop the flow of the cycle but I've been on provera for almost 3 weeks with no change, my cycle is still on.  My GYN Doc wants to do surgery in February 2011, The surgery is a hysterectomy.  Any suggestions or like cases? 

    thanks

    just nervous right now. 

  • seeknpeace
    seeknpeace Member Posts: 6
    edited January 2011

    Hello to all.

    Well, I had hoped to not come back here, and it is interesting to read the discussion that has been going on.  Bessie is correct, DCIS is stage 0, non invasive cancer in the duct.  If they find it in any node using the sentinel node method, it is not DCIS and micro invasion can happen and cause a recurrence later.

    My story is that in Jan. 2004 I was found to have micro-calcifications that they just wanted to leave alone because only 10% of ppl with these are cancerous, and if they are cancerous they have a jagged appearance and are grouped together.  Mine were spaced far apart and were well rounded.  I fought for a biopsy and my results were DCIS, high nuc grade 3, comedo subtype, full of necrosis...it was growing too fast for the blood supply to support it, and it was 2.5 cm.  Est and Prg negative. As I had already had a lumpectomy in the other breast, was 51 and had a strong family history of BC, and wanted to go with the tram flap, I had a bilateral mastectomy.  The surgeon said it was a good idea considering the above, but also because once you have a tram, if you get cancer in the other breast, you cannot have the tram again.  And also, I did not love my 51 year old breasts, would I want to create one to look like the other, get cancer in that one and then mock it again?  a little levity here.

    What I have faced since was more micro-calcifications under my arm on the cancer side, which were benign and now, I am facing a biopsy on both breasts.  Have a mass in the scar areas of both.  The areas at risk after a mastectomy with a tram are the scars and your chest wall as well as underarms and toward the collar bone.

    Yay.  I was not told to have mammograms until five years along.  I had no "mams" so, I did not think it was a regular thing.  And the mammograms that I did have a couple months ago said all was good because it just compared this one to the last one.  They are not very intelligent.  However, you can physically manipulate them.  My oncologist was concerned on our regular appt.

    Also, on a visit to my oncologist early on, her PA said to me, noting that I was upset, that I should not worry, I did not have real cancer, and I stood up and told her, Oh that is why you cut my tits off, please leave.  There are still some ppl who do not respect DCIS and they are finding more and more recurrences with it as time goes by. 

    The other thing that I wanted to say is that I have always worried about micro-invasion, my blood work came back odd, and my hair is falling out and lack luster.  I just have a bad feeling.  I also have had the pleasure of being diagnosed with MS and found out that I have been married to a sex addict for 39 years.  He is in intense therapy, and has been in recovery since 08 but hey, something good has to happen,  If the cancer is back or new cancer is here, I am going to turn myself over to science and let them figure this one out.

    Bliss to you all, hang in there but not by a noose.  Jan

  • seeknpeace
    seeknpeace Member Posts: 6
    edited January 2011

    To Luann H.

    The ppl with stage 0 are every bit as scared as are you.  The fact that this thread was started in the wrong area was not to offend you, and it certainly should not be cause to offend them.  We all have cancer and we all are seeking information and comfort from each other.  I am scared to death knowing that I am facing more cancer right now.  It upsets me to think that you would only feel like I am ok if I indeed do have it and if it has spread correctly and they can stage me at a 4 then I am allowed to share your pain.  I share it already.  I am not sure what prompted you to lash out but it was hurtful, and came from a place in you that is hurting.  Let's not do that to each other, we need each other.  I remember what it was like to be newly diagnosed and if I had started this thread and someone did that to me, I would be devastated.  I found more comfort in 2004 from these sites, and information, than from my doctor because I could come to the sites at 3 in the morning, at noon, whenever.  We need compassion along with the information we seek, especially the newly diagnosed.

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

    my sister and I were both diagnosed DCIS, Stage 1.  Different Drs., different States, several years apart

    There are exceptions to every rule.

    No need for the rudeness here. 

  • seeknpeace
    seeknpeace Member Posts: 6
    edited January 2011

    Hi erica31

    I understand how some of the answers seem rude, I think they were more from frustration than anything else.  When ppl are newly dxed, they are walking into walls and terrified sometimes, you probably remember that.  It was less than two weeks from the day they told me until my bilat, and in that time I had to pick my surgeon, my oncologist, my plastic surgeon, meet with them, get all the blood work and presurgery mess done at the hospital, try to comfort my five daughters, etc.  I really did not have any time to digest what was going on. 

    I am not sure where the DCIS stage 1 dx comes from.  It is interesting to me that they used to stage DCIS at stage 1 and that is probably the answer to this discussion.  I know that as far back as my dx, DCIS was stage 0 because it was still contained within the duct.  I also know that you can have both, DCIS and then another area that is invasive and stage 1 and I think that can be confusing.  I made sure I had every document that had to do with my lab work and diagnosis so that when I did my research, I would know what to look up.  Not just what the doctor said or I wrote down because I was so upset I knew I may get it wrong.  I have MS now and I never go to the doctor without a partner because I forget.

    So, I think what is happening is frustrating.  Today, DCIS is stage 0.  Without cutting and pasting anything, you can go to any reliable cancer site from Komen to the American Cancer association and you will find the same answer.  It just is that way now.  That is not to say that you were not told something different at a earlier time or that you did not have an old school doctor.  Like I said earlier, in 2004, when it was clearly considered cancer, I had my doctors PA tell me that I did not have cancer, so they do not always get it right.

    And, I agree, no need for rudeness. Can I ask how long ago you were dx?  And what your treatment was?  Jan

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

    Well, I had 2nd and 3rd opinion.  I AM DCIS STAGE 1.  I am not going to outline why according to my Dr. because I don't want any nasty remarks.

    My sis was diagnosed last month - same DCIS Stage 1.  Her second opinion was from MDAnderson.

    There are exceptions.  Cancer in the family 3 of 4 siblings at this point is upsetting enough without being put down on a board you seek friendship from

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

    Erica, it would be very helpful if you did explain why your doctor says that your diagnosis is DCIS Stage I.  Everything I have ever read both about DCIS and about staging has said that pure DCIS is always Stage 0.  The presence of even the tiniest microinvasion, however, changes the diagnosis to Stage I. Sometimes those with microinvasions still state their diagnosis to be "DCIS" but in fact it is DCIS-MI, which is different than pure DCIS. DCIS-MI is Stage I (that's my diagnosis); DCIS is Stage 0.  If you have any information from your doctor that is different than that, I would be interested to know.  My understanding as well is that the criteria for each stage is established - it's not subjective.  Staging is also meant to be universal so that a patient can go from one doctor to another, even in another city or country, and have the doctor understand the diagnosis by virtue of the staging. Therefore my understanding is that staging is not something that a doctor can decide for him or herself.  So a doctor who has a patient with pure DCIS cannot therefore choose to say that the patient is Stage I.

    I have checked out the MDAnderson website and have not been able to find anything that references DCIS Stage I.  

    Breast Cancer Treatment by Stage Breast cancer in situ (Stage 0) About 15-20 percent of breast cancers are very early cancers. They are sometimes called carcinoma in situ. There are two types of breast cancer in situ. One type is ductal carcinoma in situ (also known as intraductal carcinoma); the other type is lobular carcinoma in situ....

    Stage I The cancer is no bigger than 2 centimeters (about 1 inch) and has not spread outside the breast. 

    I don't mean to be rude or to be challenging; I am simply telling you what is my understanding and I honestly want more information if you have it. Given some of the previous discussions, I've spent hours and hours looking on the internet to see if there is any reference anywhere to DCIS Stage I - if there is any possibility of this being a real diagnosis and up to this point I've been unable to find a thing. So if you have information about this, it would be very educational for me and would be much appreciated.   

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

    I am not going to post what my doctor told me about my particular staging, only to have you tell me why it is wrong. As I said there are exceptions to every rule

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

    Erica, I'm really sorry that you won't provide the information. I'm always trying to learn more and if there is something to what you are saying, I would love to learn about it.  

    In the 5 years I've been on the board, there have been quite a few women who've come to the board saying that have Stage I DCIS.  However upon further discussion and in looking at the details of their pathology report, it's always become clear that there was in fact a microinvasion. So the actual diagnosis was DCIS-MI - which is Stage I.  There's only been one individual over all these years who has insisted that she has pure DCIS and is Stage I.  However on a number of occasions this individual has posted detail from her diagnosis and she's both mentioned that her diagnosis was "DCIS with a microinvasion" and she's stated that her pathology report references her tumor as being T1mic. So I've never understood why this individual believes that she has pure DCIS since it's so clear from the information she's provided about her diagnosis that she had a microinvasion and therefore her diagnosis was DCIS-MI, not pure DCIS.  And that of course explains why she is Stage I. 

    I'm not saying that the same is true in your situation and your sister's but in any case that I've ever seen or heard about like this, there has always turned to be a very logical explanation.  And it's always held true that pure DCIS is Stage 0 and never Stage I. Certainly that's what every reliable website, including BC.org, NIH, NCCN, ACS, Imaginis, Susan Love, etc. all say. As I said, if you have any reliable information that suggests otherwise, I would love to know.

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited January 2011

    Is it possible this is a simple swapping of the terms grade vs. stage? DCIS, grade 1? 

  • seeknpeace
    seeknpeace Member Posts: 6
    edited January 2011

    Well, one thing is for an absolute certainty, we are on the same team. Another is that the questionable diagnosis could be cleared up with the pathology report.  I truly hope that you got a copy of that Erica for yourself.  If your Dr. died, if you move, etc, for any number of reasons, get it.  Get all your blood work, get your surgery records.  You never know when you will need them.  One thing I learned through all of this is to be my own advocate.  Had I followed the breast clinic's advice, and my surgeon's advice, I would most likely be dead.  No one wanted to do the biopsy.  The technician and the Dr. at the breast clinic who performed the core needle biopsy said to me "why are you here, you don't have cancer".  My surgeon did it to pacify me.  But the first thing he said to me when I picked up the phone on that fateful Friday was "you are so lucky.....that you forced us to do the biopsy"  You can only imagine where my head was with the first part of that comment.  While I was DCIS Stage 0, my cancer was 2.5 cm.  That is very large for insitu.  Full of necrosis, growing too fast, could not get enough blood, nuc grade 3, comedo subtype.  I do not think I would have lived to wait the 6 mos they wanted me to. 

    Erica, if you do not have your report, get it hon.  We are all together here.  No one is calling your information into question, we want to learn as well.  I had no idea that you could have DCIS with micro invasion and it be stage 1, so I have learned that from all this back and forth. 

    I dread the biopsies I am facing this month.  It is not cool.  And, if anyone here who had recurrences after bilats with immed. tram flap, I want to hear it please.  Please.  My masses are in the scars.  one is pea sized in the breast that was cancerous, and the other is a lot of masses in the inner scar of the non cancerous breast

    One question, why can you not get cancer in the non canerous side and it be considered a metastasis? 

    Jan

  • seeknpeace
    seeknpeace Member Posts: 6
    edited January 2011

    hokay, not being an ahole, ok but on this site, here http://www.breastcancer.org/symptoms/types/dcis/diagnosis.jsp

    it tells you about DCIS, maybe that will help.  Just go read it, then look at your pathology report and see if there is not a little something extra on there....

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

    seeknpeace, you asked: "why can you not get cancer in the non cancerous side and it be considered a metastasis?"  With invasive cancer it is possible that a cancer on the contralateral side is a recurrence of the original cancer, and therefore, a metastasis, but this is highly unlikely. With pure DCIS, it's not possible.  For the cancer in the contralateral breast to be a metastasis of the original cancer, this would mean that the cancer cells would have had to leave the original breast, either through the nodes or through the vascular system, and then travel through the nodal system or the bloodstream and land and take hold in the other breast. This could happen but when cancer cells enter the nodal system or the bloodstream and move out into the body beyond the breast, they usually don't just skip over to the other breast; the first stage of mets is most commonly found in the bones (I believe).   So it would have to be quite unusual (and a stroke of good fortune) for the cancer cells to simply travel to the other breast. I remember reading up on this a while ago, trying to find out what % of contralateral BC is a recurrence and what % is a new primary.  Most of the studies and articles simply stated that with a contralateral BC, it's generally assumed to be a new primary.  I guess that's because it would be so unusual for mets to travel to the other breast.  

    With DCIS, because the cancer cells are confined to the milk ducts, there's no possibility that the cancer cells can enter the bloodstream or the nodal system.  And because the ductal system in one breast is not connected to the ductal system in the other breast, there's no possibility that the cancer cells can move through the ducts into the other breast.   

    As for DCIS with a microinvasion, that's my diagnosis so it's probably the area that I've read about the most. About 10% - 15% of cases of DCIS are found to include a microinvasion.  By definition, a microinvasion is an area of invasive cancer that is 1mm in size or smaller - so it's a really tiny invasion. The tumor classification of a microinvasion is T1mic.  T1mic is Stage I.  The reason is that even though the tumor is so small, with any amount of invasive cancer cells - cells that have broken through the wall of the milk duct and undergone the final biological change that allows the cells to survive outside the duct and travel around - there is the possibility of nodal involvement and mets.  The risk of nodal involvement for those who have microinvasions is about 10% - there have been quite a few studies that have all had results in this range.  That's why SNBs are required for those who have microinvasions, whereas they are optional for those who have pure DCIS.  I remember my surgeon explaining this to me.  The risk of mets is very small (assuming clear nodes) but it is possible.  It's the risk of mets that's the difference between Stage 0 and all the other stages and that's why the presence of just a tiny microinvasion changes a diagnosis of DCIS from Stage 0 to Stage I.  In my case I had over 7cm of DCIS and only 1mm of invasive cancer but still, I'm Stage I.  Overall my prognosis is hardly different than someone who had pure DCIS, but it's that little difference - the very small risk of mets - that changes my staging. 

    There is unfortunately not a lot written about DCIS-MI and because of that, there's a lot of confusion among those who are diagnosed and sometimes, even doctors.  But everything that is written about DCIS-MI is consistent and very clear, in terms of explaining that T1mic changes the diagnosis from Stage 0 to Stage I. 

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

    Of course I have my pathology report and I have a very good friend who is a oncology nurse who read it.

    I know no matter what i post one of you will find a way to prove me and my TEAM of doctors wrong, and call them misinformed or old school.  That is a bit insulting !!

    My sister just had the exact same diagnosis. Different state, different doctors, and different treatment

    My doctors are not old or confused.  In fact they are the opposite.

    Thought this site was for support/  but you can't seem to accept another person having the intelligence to research and get second and third opinions if those opinions are not EXACTLY what you believe is correct. 

    I don't know anyone who has had DCIS surgery who has not had a SNB, I do not think a Dr. who states "it's optional "  is very well informed.  Maybe your Dr. was older or not up to date, Bees

  • redsox
    redsox Member Posts: 523
    edited January 2011

    Erica wrote: I don't know anyone who has had DCIS surgery who has not had a SNB, I do not think a Dr. who states "it's optional "  is very well informed.  I am responding only to that statement.

    I had surgery for DCIS and did not have a SNB or any other nodal surgery, which is consistent with the recommendations for patients getting a lumpectomy for DCIS. For most patients having a lumpectomy SNB is not optional, it is not recommended. 

    The most widely accepted guidelines are those of the National Comprehensive Cancer Network (NCCN) found at this link:

    http://www.nccn.org

    http://www.nccn.org/professionals/physician_gls/pdf/breast.pdf

    The recommendations regarding nodal surgery for DCIS patients are shown in footnote f:

    "Complete axillary lymph node dissection should not be performed in the absence of evidence of invasive cancer or proven metastatic disease in women with apparent pure DCIS,  However, a small proportion of patients with apparent pure DCIS will be found to have invasive cancer at the time of their definitive surgical procedure.  Therefore, the performance of a sentinel lymph node procedure may be considered if a patient with apparent pure DCIS is treated with mastectomy or with excision in an anatomic location compromising the performance of a future sentinel lymph node procedure." 

    That is -- SNB is not recommended for DCIS patients having lumpectomy with rare exceptions.  SNB is optional for DCIS patients having mastectomy, but most such patients will have SNB.

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited January 2011

    Ditto on what Redsox said. I had 3 lumpectomies for DCIS and never a node biopsy during any of those. When I had my mastectomy, BS felt strongly it would be a good idea, and he wanted to take one node, so I agreed to the biopsy. 

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