please stop minimizing my diagnosis

Anne,

I could have written what you wrote word for word. I do feel a bit guilty going to the local support group and seeing the women with hats on because they have lost their hair. I actually started going to the support group with my mom (6 yr survivor) after my first abnormal mammo, stero biopsy, lumpectomy for ADH (which is definately pre-cancer) 2 yrs ago. The ladies were all welcoming me even at that point and ready to support me even more after my dx of DCIS this past April, several even showed me their scars and recon experiences prior to my surgery. Because of the involvment with the ladies, I started crocheting wiggies and making fleece hats for the wig bank to help others who don't have the option of not taking chemo.

Sheila

kajo119,

Did you have IDC - invasive ductal carcinoma - or DCIS?  For DCIS, the oncotype isn't required simply because chemo isn't necessary for anyone who's been diagnosed with DCIS only.  Chemo is only required for invasive cancer and DCIS is non-invasive.  The oncotype is used for women who have a smallish (about 0.5cm to maybe 2cm) tumor of IDC, with no node involvement.  These cases are borderline for chemo, so the oncotype is useful in helping with this decision. 

Hope that helps.

AMEN!!! I am tired of defending my diagnosis.  It didnt make it any easier because I had DCIS.  I still cried just as hard, its the not knowing of how things will turn out.  No one knows for sure, only one person knows and thats GOD.  He makes the decisions, not the surgeons and especially not the people in my life who look at me when I am talking to them in confidence about my BC experience and they look at me and say " Are you really still worried about that, I mean you had surgery and they removed it"  I felt like slapping this so called friend.

AMEN to that:<}

j

Karluway,

Wow, I am really sorry to hear your story. 

Did you have clear margins at the initial lumpectomy?  What was the grade of your DCIS?  It looks like you did everything right and now this!

My sister-in-law just underwent an lumpectomy and mammosite balloon placement.  Pretty straightforward process.  I thought mammosite was another method to deliver radiation, and since you had radiation 3+ years ago is the radiation oncologist recommending this? 

Take care.

Well happy I found this thread too. I agree with all of you. If it really isn't a cancer why not leave the C out of DCIS. If I had the guts I would get the biggest bare chested rally going in history to show how not really having cancer affected us! Now wouldn't that get everyone's attention!!Maybe that would speed up the research for everyone!!Cute pink shirts cover the ugliness of what it is.

OH my! Cancer LITE? Excuse me, since WHEN has any cancer been declared lite?  Umm, is that akin to be medically deemed to have low cholesterol...Do not think so.  Or, should it be put into the 'medically categorised' BOX of having a 'mild' heart attack. 

Cancer IS cancer. No two ways about it - wherever whatever.

Cancer and all the glorious stages? well, some of us just plain luck out and GET the stuff early..in whatever ways we happen to. 

We get cut, just like most others, but to a lesser degree, that doesnt mean that that 'C' demon isn't around, nor that it won't be hiding in the 'closet' for ages to come...IT IS THERE....lurking, and we know it.

A recent discussion raised the issue of 'cancer SURVIVOR'- I do hate the 's' word, as it seems to me negative. An option was 'prevailer'... that is much more positive to me somehow. 

I am not thinking all good 'thoughts' and 'happy' healing here, just simple straightforward and realistic outlooks on where we are with what all we have and are dealing with and HOW we face this all - ALL the time. 

Simply put, we have had/have cancer as much as others, it's not a second class status, and if any medical person treats you as such, either change docs or report them as best you can!  It's bad enough to have this stuff. Worse yet to be discounted for having the 'inconvenient type'? 

WHERE IS MY TRANSMORGIFIER?  I think that says it all... 

I really do think DCIS is understated. If you go thru this site carefully it is amazing how many women had DCIS or what they thought was only DCIS until they had surgeries ect. Then for many of them their status changed. I believe that since they are finding DCIS earlier and earlier it is bringing women with this to these sites and having to deal with all the fears and treatments that go along with being diagnosed and yet their doctors continue to floss over the good breast cancer. Well, it starts somewhere doesn't it? The C is still a C no matter which way you turn it around. If it wasn't, why is it often treated more aggresivley than once it becomes invasive? Or maybe they should just leave it be until it really is a cancer instead of a pre-curoser to cancer??? It would sure save alot of us the agony of all this turmoil, but then again, who wants to be the winner of this lottery? Hopefully in the future with better diagnostics they will be able to determine the winners and save alot of women from all this barbaric treatment. For our daughters sakes I hope soon!!

Dear Jordymom,

Good luck next week,I'll keep you in my prayers.

My breast onc at the NCI Cancer Center at Dartmouth Hitchcock Med Ctr, told me clearly that DCIS IS cancer. It's in the earliest stage and has not spread. I had a lumpectomy,radiation and now am on Tamoxifen.

My other DHMC oncs also made it clear that it was cancer.   

I was dx with dcis February 2007.  It has been such a comfort to me to read about the other womens (and mens) experiences here.  I have had so many medical practitioners congratulate me on my dx!  What has been most difficult is the isolation.  I worry often about reoccurance, not just of the dcis but of course a more dire dx.  Although I have gotten on with living my life, there is not a day that goes by that I do not contemplate the time bomb that I feel is in my body.  There really is no one to talk to about this.  I just saw my surgeon and got a clean bill of health.  When I asked him about counselors that might deal with the emotional piece of this he looked at me like I had two heads. 

My oncologist told me I did not have cancer.  My surgeon told me I have cancer.  I am confused and angry about the whole thing.   The worst was when I had the core biopsy - I thought it was so uncomfortable, and I was so frightened in general with the possible dx.  While I was going through it the nurse and radiologist were discussing a sports event and the betting that had gone on around it.  Honestly...I was so disgusted.

I know that I am fortunate that my prognosis is so good.  But that does not take away the seriousness of my diagnosis and the fact that I am scared.

Alison

Bessie,

You rock! As with some of the other posters, I bypassed the bc "bible" (Dr. Love's book) because of the language  she used. Fortunately my docs were very reassuring and didn't downplay the diagnosis of "just DCIS". If it's pre-cancer, why did I loose my boob and have to get an implant? Why do others have chemo and rads for a "precancer"? Cancer is cancer no matter how you cut it. It is an earthshaking diagnosis that changes your life forever whether you have DCIS or any other type.

Mark, you're in a very select group that a dx of bc is rare and I think not explored enough. Between 5-10% of bc cases occur in men and there's very little discussion on how it impacts them. Glad you found this site! It's been a godsend to me dealing with all this stuff. I know women are the majority of the cases and we get bad info, I can't begin to imagine the info you get!

We're all on this journey together and have to work in our own way to educate the docs about talking to us and not minimizing our diagnosis of DCIS!

Hugs to all,

Margaret

Blinx--

I googled "code" and "174.9".  The number is a diagnosis code for breast cancer.  Doctors' offices have to assign a standardized numerical code for each medical diagnosis.  When insurance companies are considering paying a claim, they check their list of allowable diagnosis codes.  For example, they wouldn't reimburse for a breast MRI if the diagnosis code was "717.83" (torn cruciate ligament).

Is that what you meant? 

otter 

I would certainly say so.  I've been following this thread, even though I'm stuck with IDC.  The path report on my tumor (after mastectomy) said it was 1.8 cm IDC with associated DCIS.  No surprise, I guess.

I need to do some reviewing of my pathology notes, but if I had DCIS and people made it sound insignificant (like it's not "real" cancer), I would be ticked off, too.  That's especially true when someone with extensive DCIS has to endure the same treatments as someone with the more invasive variety.

For one thing, calling DCIS "non-invasive" may be technically (semantically) correct but the term makes it sound like the cancer cells are not capable of invading--and that's obviously not a safe assumption.  In DCIS, the cells have not invaded yet, but they may well be "invasive" at some time in the future.  Isn't it assumed that virtually all invasive/infiltrative ductal carcinomas started out as DCIS?

I realize that some DCIS may not become invasive even if left alone. Why, nobody knows for sure. Apparently, the cells never figure out how to break out and grow beyond the ductal epithelial layer.  That's also similar to what happens with some locally invasive cancers--they never figure out how to get into the blood or lymphatics and establish themselves elsewhere as mets.

But, until somebody comes up with the holy grail that can accurately predict which DCIS will or will not become invasive, I think we're all in this battle together.

otter 

I was just at my optometrist office over the weekend and mentioned that I went through BC surgery last summer and she said that we need to put in your records. I did not even think about it getting my eyes checked.  She did not ask what type but that it is important to be in the records.

Sheila