If I read one more post saying DCIS isn't cancer

Wow, I cannot believe people said all those things! Well you all are better off without them but what on earh could they be thinking to say such things? I am sorry you all had to deal with such hurtful things. I so far haven't had anything like that. I only had one friend who was more practical than warm but she never said anything hurtful.

I can sort of relate when I got divorced I had two friends one who I considered my closest friend on earth, both decided all of a sudden to be friends with my ex. They never had said more than two words to him before but all of a sudden they told me they were too uncomfortable to be around me. It has been close to 4 years now and the one whose friendship I treasured has still never said anything to me. I don't know people can react or act very strange when life's big challenges arrive. I think it is sad as ultimately they lost a wonderful friend and now having gone through something like cancer is going to be a stronger and more compassionate friend to all those around her. 

No, none of us need people around who can't be loving and supportive and kind and have our best interests at heart while taking into consideration our feelings and where we are in the process at any given time. 

Wow! You women keep me sane. I am in between surgeries. Bad margins on all sides after the lumpectomy now I'm interviewing PS, weighing reconstruction options, blah, blah. I returned to work last week after taking 2 weeks which was longer than they suggested and I was exhausted. Ladyod, your patient was outrageous! I am a counselor and have a busy practice in a medical setting and have been rescheduling patients constantly around all of my appointments and almost everyone is incredibly understanding. I do think that when people ask if you have a family history or they give you unsolicited advice they want to feel in control or that this diagnosis could not possibly happen to them.

I wanted to add that I also have met with a counselor who specializes in BS (she practices with my BS) and she has given me very good practical advice. My husband and I also meet with a therapist to help each of us communicate about caring for each other. We try, but sometimes we are not in synch about what the other needs. I am a therapist myself, but it does me no good at all. I feel vulnerable and scared and definitely have needed the support.

@Ladyod, I believe you are mistaken in saying DCIS is not capable of metastasis. I have read this can happen in 1% of cases, so perhaps most doctors don't feel this is significant. In fact, someone earlier in this thread reports this happened to her, despite having had a mastectomy. 

After reading more and more I think this is what concerns me more than anything in terms of deciding whether or not to have a mastectomy myself. And that is I have read that despite all the new cases of DCIS detected by mammography, locally recurring invasive cancer is only down somewhat, and metastatic cancer has stayed virtually the same. So I guess the issue isn't so much that DCIS isn't real, it's that maybe that the treatment isn't having a huge impact on the number of invasive and metastatic cancers being seen. 

I read in one article that there is a study being conducted (in SF I believe) where women diagnosed with DCIS are being given Tamoxifen for three months prior to surgery to try to determing whether it has any effect on shrinking or eradicating the tumors, looking for evidence that might support using Tamoxifen instead of surgery (at least in some cases) in place of surgery and/or radiation.   Another article I read talked about HER status and how a certain HER status appeared to make a person 6 times more likely to develop invasive BC, so it held that perhaps routine HER screening for DCIS was indicated.  I assume to help patients make more informed decisions about their treatment.

This is a recurrence for me - I had lumpectomy and radiation the first time around. I am trying to wrap my mind around having a mastectomy, but am having a hard time with it and am looking for alternatives. I had a hard time with the lumpectomy/partial mastectomy pain wise and really don't want to have to go through it agan if I don't absolutely have to.

I wish I had a crystal ball lol. But in lieu of that, I am thinking of asking my family doc (at my pre op exam) about a second opinion on the biopsy path report and possible HER screening. Even though I am already scheduled for the mastectomy and reconstruction next week.  

hellome, I'm sorry about your recurrence.  And I know how you feel about facing a mastectomy - I didn't have any choice (too much DCIS in a small breast) but it was not something I wanted and it took a while to wrap my head around it. 

As for DCIS itself, while I feel it's wrong for doctors and others in the medical field to downplay DCIS by saying it's not cancer, my understanding is the same as Ladyod's - DCIS cannot metastasize.  DCIS cancer cells lack one final molecular change that allows these cells to become invasive and survive outside the milk ducts.  To me this does not mean that DCIS is not cancer; DCIS is pre-invasive cancer, with all the properties of cancer except this one. And with this one small molecular change, the very same cell that was DCIS one day, the next day can become an invasive cancer cell, with all the properties of any invasive cancer. 

So what can and does happen with DCIS cancer cells is that over time they undergo this molecular change and become invasive cancer cells, breaking through the milk duct.  At this point, these cancer cells, which at one time were DCIS but now are invasive, can metastasize.  This is why it's generally considered best to treat DCIS while it's still DCIS. 

Here's what else can happen.  In about 15% of cases initially diagnosed as DCIS, there is in fact a small amount of invasive cancer (IDC) also present.  Usually this IDC is found but in a small percent of cases it's not found.  With any amount of IDC, even just a microinvasion (as I had), it is possible to have nodal involvement and it is possible for the cancer cells to move outside of the breast and metastasize.  So in those rare cases where a microinvasion is not found, nodal involvement or metastisis can develop from a diagnosis that appeared to be pure DCIS.  This is very unusual and happens mostly in cases where the DCIS was extensive and high grade (situations where the risk of microinvasion was high).  When this happens, the medical assumption is that there was an occult (i.e. undiscovered) microinvasion.  So the mets that develops did not source from the DCIS; it sourced from the undetected invasive cancer.  This may be what happened in the case that you read about on this board.

Something else that can happen is that when someone initially diagnosed with DCIS has a recurrence, this recurrence may not be found until the cancer has already evolved to become invasive.  About 50% of DCIS recurrences are invasive.  If this happens, and if the recurrence is not found until the invasive cancer has already moved into the body and started to metastasize, then it can appear that mets developed directly from DCIS, but in fact there was a step in between when the DCIS evolved to become invasive cancer.  This type of situation happens very rarely - most DCIS recurrences, even those that are invasive, are found while they are still early stage. 

I hope that this doesn't scare women with DCIS; the types of situations that I've referred to where mets develops from undetected invasive cancer are very rare.  I thought however that it was important to clarify that metastisis cannot develop directly from DCIS, based on current medical science understanding. 

As for HER2+ status increasing the risk of invasiveness by 6 times, there was one study last year that showed this.  This was a very small study with a very small sample size.  Over the years there have been other small studies that have shown the same thing.  But there are been about the same number of small studies that have actually shown the opposite - that those who have HER2+ DCIS are in fact less likely to develop invasive cancer.  The study that showed the 6 times increase in invasiveness is the most recent study, so it's the one that is currently top of mind.  But what it comes down to is that the data is conflicting and none of these studies have been large enough to draw definitive conclusions.  In other posts on this board I have included links to a number of studies on HER2 status and DCIS; I won't repeat that here.  But since a high percent of DCIS is HER2+, it's important to point out that as of now no clear conclusions have been drawn about what HER2 status means for DCIS. 

Beesie,  thank you for that explaination. That is exactly what I tried to ask my oncologist but apparently I wasn't able to put it into words so he would know what I was really trying to ask. That does help. So am I correct that even though you had widely spread DCIS and some small microinvasion they recommended no other treatment other than the mastectomy? Was it because the side effects outweighed the benefiits? I'm sorry if I'm asking something you have already said I am just still confused and want to make sure I understand correctly as I am still concerned and worried about no haveing any further treatment or any way to monitor in case something was missed. Thank you so much.

Flying Dutchess:  Mine is from Salon Savvy:  never brave enough to do it myself!....well once, but my husband asked me to turn off the light at bedtime and then gaffawed that "oh, that;s just your hair"...so never again LOL!

 Greysean:  this is from my doctors forum: 

The presence or absence of lymph node involvement is one of the most important factors in determining the long-term outcome of the cancer (prognosis), and it often guides decisions about treatment.

• If the axillary lymph nodes are involved with cancer (positive nodes), there is a higher chance that the tumor has spread elsewhere, and all of these women are advised to have adjuvant systemic therapy.
• Systemic therapy is recommended less often for women who have no cancer cells detected in the axillary lymph nodes (node-negative breast cancer), particularly if the tumor is small.

Radiation therapy after mastectomy - Radiation therapy is sometimes recommended after a mastectomy to decrease the chance of a recurrence, especially in women who have large tumors (5 cm in size or larger), have tumors close to the chest wall, or who have four or more positive lymph nodes [1]. The benefit of radiation after mastectomy for women with fewer involved lymph nodes is controversial.

Women who have had a BMX and do not have noninvasive, nonaggressive, small tumors are generally not put on tamoxifen because of the 1% chance of a uterine sarcoma which is fatal 100% of the time.   The risk just does not outweigh the benefit.

Hope that helps!   Tammy

Yes, I stand corrected. My oncologist told me that FOR ME it would not be worth it.  However, the statistics you listed, he did not tell me.  His exact words were that the it is fatal all of the time.  He should not have said that and I should not have relayed what was told to me. 

OK, I will try this ONE MORE TIME LOL (See deletes above)

Yes, I stand corrected.   Remember that your treatment plan is based on your own individual information:  doctors take into consideration your general health, your medicines, your family and medical history, as well as the type, size, and grade of breast cancer you have.  For me, tamoxifen was not recommended.  I do have endometriosis, so maybe that plays a part......but I do apologize if I caused anyone grief from that statement.

Thank you to all who answered, that helped me a lot. Now one other question as I am post menopause what about the other anti-estrogen medicines? The BS talked to me about Tamoxifen and the other medicines but the oncologist said no to either. Since my apt. with the oncologist I have thought of other things I wished I had asked so I'm thinking of going for a second opinion just for peace of mind and wanted to know a bit more.

I am not trying to be put on any medicine as the side effects of all types does worry me a great deal. I just want to know I made an informed decision. I was on HRT with strong estrogen for many years and also went through all the infertility drugs so I do worry about other cancers. Thank you so much for makeing things so much easier to understand. 

flyingdutchess,  for women whose breast cancer tests positive for estrogen receptors, it means that their breast cancer is being fed by estrogen.  This is "ER+" breast cancer.  For women who have ER+ breast cancer, by reducing the amount of estrogen in their bodies, you are in effect taking the fuel away from the cancer, and this reduces the risk that the cancer might spread or that a new cancer might develop. 

Tamoxifen is a hormone suppressor, an anti-estrogen.  Tamoxifen is given to women who have ER+ breast cancer to reduce the amount of estrogen in their bodies and thereby reduce the risk of recurrence.  Women who have ER- breast cancer, as you do, do not benefit from Tamoxifen because your cancer is not being fed by estrogen. So lowering the amount of estrogen in your body wouldn't help reduce your recurrence risk.  Because of this, normally Tamoxifen is only considered for women who have ER+ breast cancer.

Greysean, because you are post-menopausal, you could take an AI instead of Tamoxifen.  But last I heard, none of the AIs have been approved for those who have DCIS.  There are some clinical trials underway and I know that some women receive AIs 'off label'.  Still, with a risk level as low as yours after having a bilateral for non-invasive cancer, it seems to me that any drug or treatment would present you with greater risk than benefit.  If your total risk is only around 2% (recurrence or new BC), is it worth it to you to undergo any side effects at all for a risk reduction of only 1%?

Hello anghub,  I just wanted to say that your March 13th post was almost exactly word for word my initial experience. I was diagnosed March 2009.  I just had my one year anniversary---breast cancer free!!! My left breast is healing, although I still have a 'permanent sunburn' from my radiation even a year later.  My right breast was confirmed clear after an MRI. I chose not to take Tamoxifen since I didn't do well with it.  My med onc will revisit that next week. I too had friends that unintentionally did not take it seriously. I had a dear friend in the same circle that had just finished treatment for invasive cancer (she had rads & chemo & tamoxifen).  Sooooo....my cancer "wasn't as bad as so and so" or "at least you didn't need chemo" or "you're JUST receiving radiation"....you must completely understand my heartache.  One year later my immune system is depleted (super low Vit D levels), I am fatigued, I suffer from severe sciatic nerve pain, and my rheumatoid arthritis levels were elevated (probably triggered by rads)...I am happy and positive...but it wasn't just DCIS, it never will be.  Keep you chin up and keep us posted on your well-being.

Good morning Chapparrita1: I haven't posted in awhile but I have been lurking (reading the boards pretty much EVERY day   Thank you for responding to my post. Since my 2 previous posts I've had an Ultrasound guided biopsy on the left breast for the suspicious malignancy and have been to another surgeon for a 2nd opinion. My insurance said I had to do an ultrasound guided biopsy before they would approve an MRI guided biopsy...(silly if you ask me) because then I probably could have avoided the MRI followup I just had.

1. The Ultrasound guided biopsy results came back benign on the area in the left breast......so the followup MRI I just had this past Friday is to be sure the correct area was biopsied since the suspicious area was so small to begin with. Although I did have a bilateral breast MRI (DCIS-right breast - and suspicious malignancy was-left breast).

2. The 2nd surgeon I saw agrees with the first surgeon's protocol of lumpectomy, radiation, and tamoxifen. The 2nd surgeon is the one I am going to go with for my lumpectomy.  I spoke with the P.A. for awhile before speaking with her and the surgeon together. The only difference between this sugeon and the first one I saw (in regards to DCIS) is that this surgeon said DCIS IS cancer. The P.A. explained that it is a preinvasive cancer. Both the P.A. and the surgeon spent so much time with me and then I spent additional time with the surgeon in his office and he went into so much more detail about EVERYTHING.

When the Dr's office calls me to let me know the MRI results are in I'll also speak then about a surgery date. I'll be sure to keep you updated. I LOVE these messages boards NOT the reason for them but the fact that they have provided me with SO MUCH KNOWLEDGEABLE information.

Also to Beesie- HATS OFF TO YOU you REALLY do provide a wealth of information!!!

As I said elsewhere, thanks for posting the links.  I read the post and some other ones on the blog.

In my humble opinion, coolbreeze fails to grasp that there are different types of DCIS.  Perhaps it shouldn't all be called DCIS but hey, how many stupid sets of initials can we combine?  At anyrate, the failure to grasp the significance of the difference between grade 1 and grade 3 greatly weakens the impact of the argument as well as its coherence. 

That said, it saddens me that anyone would be fighting over who is sicker not to mention that I have never heard/read any DCIS person say their illness was the same as being diagnoised Stage IV  --what a waste of communal energy.

I told myself that I would quit posting....that  BC wouldn't and shouldn't be that important in my life.  But then, I went to coolbreezes blog.  I actually am on the fence on this cancer thing:  I know that DCIS IS cancer, but I wish they wouldn't call it that (its a mind thing).  I also know that the medical definition of cancer says the cells are invasive.( which DCIS is not---although technically my normal breast cells were taken over and replaced by out of control cells, so the debate continues)  So I went objectively to her blog.  Much of what she says is true, but what bothers me is her statement "You can't compare the experiences of a woman with DCIS with the experience of a woman with Stage IV breast cancer. I've heard people try, and I understand that the fear seems the same to them, but it's unreasonable, irrational fear. You don't die of DCIS.".  I have NEVER compared my disease to Stage I, II, III and certainly not Stage IV.  But I WAS treated like someone (not all, but some) with Stage I BC.    And until I got the final pathology report that said all of the cancer they found---one half (lateral and medial quadrants) of a DDD breast------was 100% Grade 3 DCIS, I didn't know WHAT I was dealing with.  My fears of dying and leaving my family was 100% legitimate.  And they were traumatic and you can not just say "Oh, phew!  Guess I was silly to think that way! Boy was I irrational! Guess I'll turn them off now."  No, the innocence is gone...I know what it is like to fear dying, something I had never experienced  before, but something I know I will have to face again in my future (hopefully a long long time from now).  The phrase "Ignorance is bliss" comes to mind.

FYI:   Breast cancer is not the only cancer which can be non invasive at first and starts in situ:  colon cancer, bladder, prostate,  and bowmens skin cancer are all examples of cancers that can be carcinoma in situ.  Do physicians want to take the name "cancer" out of their diagnosis?  Do surgeons wait until it has spread to treat it or call it cancer?  No, of course not.  THAT would be unreasonable.

The truth is that cancer cells are cells that grow out of control in your body.  Which is what DCIS does. Otherwise it would be DAIS:  ductal adenoma in situ, a benign growth of cells. (making that word up, btw)  And playing "My cancer is worse than your cancer" just isn't helping anyone.  Those of us with DCIS KNOW we are blessed to have Stage 0, non invasive cancer.  We don't want to have any thing worse and we feel empathy and deep feelings of emotions for our fellow members who are facing much, much worse....but saying we are irrational in our fear....that belittles what we are going through and quite frankly, I think is ignorant.  No one can tell you how you should feel.  Heck, half the time WE can't tell us how to feel!  Do you think anyone wants to worry, feel guilty about worrying, or feel beaten down?  Do you think we do it for kicks?  Do you think that 60,000 women, no lets say 30,000 women assuming there may be some women out there who really don't care that their breasts took on a mind of their own and started growing disruptive cells which could someday kill them, do you think all 30000 women all choose to feel this way?  Hmmm, maybe, just maybe, our fears are not irrational, our feelings are valid, and it is REASONABLE to react this way.  Yes, I am pretty sure that it is normal to have these fears when so many of us do feel this way.  And please note, that I said DCIS can kill you some day...because untreated, it very well might. 

LadyOD don't feel bad about your phrasing.  I had the same thoughts when I read the blog.

Here's to the universe finding the answer for everyone's cancer.