newly diagnosed

Hi annielynn:  Sorry to meet this way but my DCIS did not show up on a Mammo, a Digital Mammo or an ultrasound and within that same week it did show up on an MRI.. so although your doc hasn't seen DCIS not show up on a mammo before it happens and you aren't alone!  It was out of left field for me too, I was having the tests because my daughter's doc wanted me tested as my father died from invasive bc - so she (my daughter's doc) was trying to make sure that we were not BRCA +..  I was negative and all of my scans were clear.. The genetic counselor set up an MRI (even though the other tests were negative) more as a "base line" because of the high risk component and there was the DCIS...  It's really knocks you down doesn't it!!  I'm sorry you have to go through this.. but there is incredible information here and it can put you in a position of "power" when it comes to making decisions.. so please keep checking back   And also try to pick up on threads (in this forum) with the author "Beesie" she is incredibly informative about DCIS as well as invasive cancers and I promise you will get a wealth of info out of her words - I know I did!  And there are many other's here who can help too!!  It is frightening and please know I was just as frightened!  It gets better with time and also please know that  you have time with DCIS to do the research that will put you in a better position to make decisions as they come flying towards you..  DCIS is non-invasive cancer - it stays in the ducts - but at some point it CAN become invasive.  From what they understand it can take YEARS to develop into something invasive, so you have a few months to make decision if you need them.  I would suggest you get a copy of the biopsy so you can understand what grade and then have your slides sent out to a pathology group that has a strong experience with bc.  I had mine sent to Vanderbilt, but there are many good ones.  The second opinion will give you more information and sometimes can confuss the issue but more often than not it will help you see things more clearly.  Also, if you have family history of bc (or strong cancer of any kind in your family history) try to get an appointment with a genetic counselor who can help you know your risk..

You should also know that DCIS is a very contraversial topic in the health care arena..  Some doc's believe that it shouldn't be called out as a cancer at all but please do your own research before to take anyones "theories" and make YOUR decisions.  I say that knowing how incredibly frustrating the medical establishment was with me when I was trying to understand treatment options. 

Good luck, and please keep talking here!  Best,  Deirdre

Hi Annielynn,

I am not sure why you listed your DCIS as stage 1. True DCIS is stage 0, non-invasive cancer. If you have true DCIS, it means that you can take your time in deciding what treatments are best for you.



I would recommend you get a 2nd pathology opinion from an expert pathologist before you decide on what treatment you want, since pathologists disagree as much as 25 percent of the time. With treatments for DCIS ranging all the way from a mastectomy, to lumpectomy with radiation, to a lumpectomy without radiation, you will want to be sure exactly what your diagnosis is before you proceed.



In 2007, after I had a lumpectomy for my DCIS, I was told I did not get good margins and therefore needed a mastectomy. I consulted with Dr. Michael Lagios, a world-renowned DCIS expert and pathologist with a consulting service that anyone can use. He disagreed with my local pathologists and said that I did not need a mastectomy. He also said that because my score on the Van Nuys Prognostic Index was low, my risk of recurrence without radiation was only 4 percent. That meant that the approximately 50 percent recurrence risk reduction from radiation was not worth it to me, especially because it can only be used once.



Since there is so much controversy concerning DCIS, especially in regard to using radiation for all DCIS patients, a lot of what you choose for treatment will be based on what feels right for you. You will need to be comfortable with whatever you choose.



Please feel free to send me a private message if you have any questions. I would be happy to do whatever I can to help.



Hugs,

Sandie

Hi again, yes sick to your stomach sound very familiar!!  And even with the best support in the world (wife, husband, mother, father etc) this situation made me feel very alone - alone in decisions (even though I had some excellent doc's), very alone with the treatment and a sickening feeling that this time, unlike any other situation where I needed a doc's help, this time I was the only one who would make this decision.. I got the best info I could but what makes us so sick IMO is the knowledge that the doc's are even confussed by this dx...  So take control now - call you bs and get a copy of your biopsy report, look up your information on line so that you are familiar with the terms and the potential treatments just get on top of this so you can counter the fear..   and know that perhaps every one dx'ed with DCIS (and perhaps bc in general) understands the incredible fear you are experiencing right at this moment!

I was impressed with Vanderbilt, but that too is very much an individual decision!  As Sandy states above Dr. Michael Lagios is also known for his expertise in the area of DCIS especially.  Truth is any major cancer hospital has some value to you in this.  Montana may have some of the best pathologists (I don't know) but you can't assume they have the expertise to look at this biopsy slide (or I should say these slide) and make a good determination of what they are looking at.  In addition it's (having a second opinion) is an easy thing to do and many time women (and men) just go along with there first decisions.. You are very wise to check this site out and use the information before you go any further into the situation.  You just have to ask the original bs to send out your slides to the facility you determine to be the best for you... Keep talking!  Best, Deirdre

It isn't vanity B:  it's a natural reaction - don't let anyone tell you that you shouldn't be feeling a loss!  You are losing a piece of yourself and it is difficult - maybe even horrendous.. that said if it is the only way to save your life then you may need to do it.. but please be sure you have done all of your research, looked at all of the senerios before you go through it.  I'm not going to lie - the surgery itself is the easiest part IMO, it adjusting after that is really difficult.

I always recommend that a psychologist be added to your list of specialist and try to see him/her before surgery.. it won't change the surgery but it can change the way we look at surgery.  It is also very helpful because EVERYONE has an opinion and we tend (at least I did and many of the women I've spoken to did also) mute your own opinion.  A therapist might help you drowned out the other's opinion and get to what YOU really want and need.  I honestly don't understand why a therapist isn't automatically included..  but you can request that one be if you have insurance (even if you don't - but you'll have to pay out of pocket then)...  Good luck ladies and please feel free to e-mail me if I can answer questions that you might be hesitant to place on the open forum.  Best, Deirdre

OMG Annielynn, I'm so very sorry about your daughter!!!  I can't even imagine what that might be like - it's doesn't seem fair that you have to deal with so much!!  Just remember that with DCIS you do have time - time to consider and re-consider your treatment options...  Take good care and keep talking!!!  Best, Deirdre

Annielynn:  I am so sorry to hear about the loss of your daughter.  As Deirdre1 and speech529 indicate above, I can't begin to imagine what that is like.  And now DCIS to deal with. 

As above, you have time to consider your options.  Sending thoughts of strength your way.

beatingit2:  I understand your fear completely, and concerns about the way you will look after surgery. 

I opted for a bilateral mastectomy (which was done on 09/17) with immediate reconstruction, using tissue expanders.  They weren't able to save my left nipple, but they did nipple-sparing surgery on my right breast.  To date, I have a half-moon incision underneath my right nipple (which is healing nicely, by the way!) and the scars on both sides are only 2 inches or so in length and very, very thin (about the width of thick sewing thread).  And, those scars will definitely fade in time. I'm including a link to a forum thread on scar management:  http://community.breastcancer.org/forum/44/topic/756050?page=7#idx_194

I'm off to Maui on 12/17 and will be wearing string bikinis; I dare ANYONE to guess that I had a bilateral mastectomy on 09/17!  And, I've asked my PS for bigger boobies, which I'm getting gradually with my tissue expander fills.  So, there is a bit of a silver lining with this process.

I'll be thinking of you on 12/23; good luck with surgery. 

Julie

Hi. I'm new.

Something noticed in my mammo last August. Second mammo and ultrasound early Sept. Needle localization and surgery Sept 25. DCIS diagnosis but still an area with more cells beyond the perimeter of original area  so second surgery scheduled for Jan. 17.

I feel pretty positive about all of this but am not sure what to ask. I do not know which stage this or what to expect next except once cells are clear I have to go for radiation. Don't know how long. 

 I have Fibromyalgia so am concerned about effects of radiation. Also have noticed that scar from original surgery seems to be slow in healing.but I really have nothing to compare that too. It seemd a bit red and is tender but with fibro I've noticed it does take me longer to heal.

 Since I am new at this any info or thoughts would be appreciated. 

 I am sorry that this is how I had to meet you all but I know the value of support groups and discussion so am glad to connect with you.

 I have also learned the value and power of prayer.

Judai and Tgillock5, welcome to the club no one wants to join. I had IDC not DCIS but I am sure Beesie will be along shortly to offer her help. She is a wealth of information on DCIS and will help you with decisions and any questions you may have. Take deep breaths and know that you can do this. It truly sucks but you can do it.

HUGS!!!

annielynn - Why the bilateral mastectomy for an in-situ ductal carcinoma?  I do not understand this.  I'm surprised you were even allowed to see any sort of oncologist.  I sure wasn't.  Anyway - what is the rationale?  And why would there be radiation?

Teri:  How did your pathology report turn out?  I see today was the day for your results . . .

annielynn and judai:  Thinking of you, and sending thoughts of strength your way.

Julie

Teri, sorry to hear about the close margins.  My interpretation of what you wrote would be the same as yours, which is that the anterior and posterior margins are both less than 1mm.  Usually that means more surgery, either a re-excision or a mastectomy, but there have been some women on this board who've dealt with close margins with radiation. 

annielynn, I have to say that I'm surprised that all your doctors are recommending a bilateral.  I can see that they might all recommend a mastectomy if it appears that your DCIS is widespread but I don't understand why they are saying bilateral.  Are you particularly high risk to get BC again?  Or have your films shown potential cancer in your other breast?  I'm not suggesting that you may not want to have a bilateral, but it's unusual for doctors to recommend the removal of a healthy contralateral breast if there is no apparent medical need or high risk.  So for you to have 4 doctors all recommend this seems odd, unless there is a reason for concern about your other breast.

CTMOM, I think the question of whether a fibroadenoma needs to be removed probably depends on the size of the fibroadenoma and where it is located.  Mine were large - about 1/3 of the size of my breast - so there's no way that a mammo would have been effective at showing all my breast tissue if I had not had my fibroadenomas removed. And this I think is why in most medical discussions about fibroadenomas, it's usually recommended that fibroadenomas be removed once a woman reaches the age where she will be getting regular mammos - the concern is simply that the solid fibroadenoma will block the view of some of the breast tissue.  If a fibroadenoma is smaller, I would certainly agree with you that I wouldn't have surgery to remove it.  

Well I have appt with Oncologist on Jan 26th!  Things are moving along and I am back to work (FINALLY)...I was bugging up at home doing nothing (being restricted is not they way to spend a week alone at home )!  Still waiting ER testing...Only issue I have is that my nipple is now overly sensitive.  Feels like when you are breastfeeding and the baby does not latch on correctly....oooch!  Other than that cosmetically my surgeon did a FABULOUS job.  Minimal scar and no "divits"  I look normal other than my areola and nipple lay a bit flatter.  I can live with that!