Has anyone had Reoccurance of DCIS after a Mastectomy

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.

bump!

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?

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.

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. 

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.

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))

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. 

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.

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

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.   

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.

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, 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. 

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.